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CANCER AND THE
FAMILY CAREGIVER
'.
CANCER AND THE
FAMILY CAREGIVER
Distress and Coping
By
ORA GILBAR
School of Social Work, Faculty of Social Welfare and, Health Studies
University of Haifa
and
HASIDA BEN-ZUR
School of Social Work, Faculty of Social Welfare and Health Studies
University of Haifa
Charles C Thomas
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SPRINGFIELD • ILLINOIS • U.S.A.
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©2002 by CHARLES C THOMAS • PUBLISHER, LTD.
ISBN 0-398-07290-6 (hard)

ISBN 0-398-07291-4 (paper)
Library of Congress Catalog Card Number: 2002020634
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Library of Congress Cataloging-in-Publication Data
Gilbar, Ora.
Cancer and the family caregiver : distress and coping / by Ora Gilbar and Hasida Ben-Zur.
p. cm.
Includes bibliographical references and index.
ISBN 0-398-07290-6 (hard) - ISBN 0-398-07291-4 (paper)
1. Cancer-Patients-Care. 2. Caregivers. 3. Cancer—Psychological aspects. 4. Stress
(Psychology) I. Ben-Zur, Hasida. II. Title.
RC262 ,G53 2002

362.T96994-dc21
2002020634
PREFACE
T his book is the product of the authors’ research and clinical practice
in the field of psycho-oncology, stress, and coping for a period of
over twenty years. During this time, cancer caregiving has emerged as
an area of mounting importance and relevance to society in light of
growing longevity and the concomitant challenges involved in care¬
giving to cancer patients.
Although certain aspects of the topic have been examined in the lit¬
erature, primarily in the realm of family and social support, a gap exists
in the discussion of caregiver distress. The book thus fills a lacuna felt
by both cancer researchers and psycho-oncologists in the vital area of
predicting, acknowledging, and alleviating the distress of caregivers of
cancer patients. Professor Ora Gilbar’s research topics and interests are
in the area of psycho-oncology, and Dr. Hasida Ben-Zur’s expertise is
in the field of stress and coping.
The book was completed a year after the death of Professor Atara
Kaplan De-Nour, of Hadassah University Hospital, Jerusalem, a path¬
breaking mentor to a generation of psycho-oncologists in the area of
family coping with cancer. Discussions with her over a period of sev¬
eral years, along with the impact of her research, had an important
influence on the conceptualization of the book by widening out the
scope of cancer caregiving discourse.
We are grateful for the illuminating and constructive comments
regarding the ethical issues discussed in the book by Professor Amiram
Gafni of the Faculty of Health Sciences, Macmaster University, Dr.
Abraham Mansbach, Ben-Gurion University; and Roy Gilbar, Ph.D.
candidate at Queen Mary and Westfield College, University of Lon¬
don.
We would like to express our appreciation to the Research Author¬
ity of the University of Haifa for its sustained financial support during
VI Cancer and the Family Caregiver
the editorial and production stages of the book. Special thanks are due
Judy Krausz for her invaluable editorial assistance with the book. Gen-
oveba Breitstein produced the various drafts of the book with skill and
devotion.
Our deepest thanks go to all the patients who agreed to share their
feelings, perceptions, and methods of coping with the illness outcomes,
as well as to their caregivers, who, by agreeing to be interviewed, assist¬
ed our work invaluably over the years.
INTRODUCTION
M edical progress in increasing longevity has brought with it a large

rise in the number of people who live in a state of chronic or ter¬
minal illness for a prolonged period of time. The outcome of this situ¬
ation is that a significant proportion of the population is dependent on
others in their everyday activity. Many if not most adults will become
caregivers to an ill member of their family at some time, and some peo¬
ple will be care receivers before they themselves reach old age. Care¬
giving in general, and caregiving to a member of the family in
particular, therefore, constitutes an important societal issue (Biegel et
ah, 1991).
The family has long been recognized as the best care solution, from
a psychological and psychosocial point of view, for an ill person. An
awareness of the vital role of the family member who provides such
care, which in some cases actually contributes to enhancing the sur¬
vival of the patient, has engendered increased interest in the family
caregiver by both social science researchers on the one hand and
health professionals on the other. Most of the extant research on care¬
giving focuses on the burden of the caregiver: health problems that
arise, disruption of well-being, role conflict, moodiness, and financial
burdens (Haley, 1997; Steketee, 1997). These effects stem from the
increasing needs of the dependent family member over a long period
of time, whether dependency is caused by physical or mental illness or
disruptive behavior.
While a growing body of literature discusses caregiving for the eld¬
erly with Alzheimer’s, dementia, mental illness, brain injury, and men¬
tal retardation, only a few studies deal with caregiving for cancer
patients. Furthermore, the terminology surrounding caregiving for
cancer patients differs from that of caregiving for other chronic illness¬
es, in that the element of social support takes on greater importance.
Vll
Vlll Cancer and the Family Caregiver
An explanation for this may rely on the distinctive characterization of

cancer as compared to other types of chronic illness. Cancer is defined
by a series of phases, all of them stressful: diagnosis, surgical interven¬
tion, adjuvant medical treatment, follow-up, recurrence, and terminal
phase. The diagnosis and surgery phases are of short duration (gener¬
ally not more than six weeks), while the adjuvant medical.treatments
can last between seven and nine months. These stages involve a threat
to body image, physical independence, family role and career, in addi¬
tion to a threat to life. Although in the follow-up phase patients live
their lives normally, with no physical dependency and no direct threat
to their family role or career, they are in a stressful situation caused by
the fear of recurrence. This period depends, of course, on the progno¬
sis and may last for years. The recurrence phase is a stressful situation
caused by the awareness of the progression of the illness, heightening
the threat to the patient’s life. This period may be prolonged, in most
cases with only brief intervals of medical treatment. In the terminal
phase, both physical dependency and emotional dependency are
greater, as the patient is confronted with approaching death.
The book focuses on the caregivers of cancer patients in various
phases of the illness, a topic that takes on importance in light of statis¬
tics showing that three persons in four will have someone in their
immediate family (parent, spouse, child) who will have cancer (Amer¬
ican Cancer Society, 1995). The discussion of cancer-patient caregivers
is divided into three aspects: theoretical (Part One), research (Part
Two), and practical (Part Three) issues.
Part One presents theoretical background on the structure and pro¬
gression of the caregiver role, and how caregivers cope with the illness,
as explored in recent literature. This presentation is generally based on
two coping-with-stress models, both of which depict the caregiver role
as a stressful situation: Lazarus and Folkman’s coping-with-stress model
(1984), and Biegel’s ABCX coping-with-stress model (Biegel et al.,
1991). Chapter 1 discusses research on the factors that affect caregiver
distress, including patient variables as stressors, appraisal, perception of
burden, the coping process, and resources. The caregiver in the context
of social support is also examined. The perception of the caregiver of
cancer patients is discussed in Chapter 2, based on the premise that
cancer constitutes a stressful situation for every member of the family,
and especially for the primary and secondary caregiver. The chapter
Introduction IX
presents the caregiver models for cancer patients based on the work by
Lazarus and Folkman (1984), Lazarus (1999), and Biegel et al. (1991).
Part Two presents empirical research on caregiver psychological
distress carried out by the authors during 1993-99. The first chapter
(Chapter 3) focuses on measurement issues. It begins with a description
of stress-related measures—the Brief Symptom Inventory (BSI; Dero-
gatis, 1983), psychosocial adjustment (PSA; Ben-Zur, Gilbar, & Lev,
2001), the short version of the COPE scale (Carver et al., 1989), and
social support measures. It goes on to explore measures specifically
related to physical illness. Each instrument is described, and evidence
for its reliability and validity is provided. In addition, Israeli normative
data on the Brief Symptom Inventory (BSI) and COPE scales are
described and are used in later chapters of the book as baseline levels
to which caregiver distress and coping are compared. Chapter 4 pres¬
ents three studies: the psychological distress and everyday psychosocial
adjustment of seventy-three spouses of breast cancer patients; the dis¬
tress and psychosocial adjustment to illness of forty-four spouses of
gynecological cancer patients; and the distress and perceptions of bur¬
den of sixty elderly caregivers, as compared with that of the patients.
Chapter 5 describes the coping strategies of the seventy-three
spouse caregivers to breast cancer patients, comparing them with the
patients’ strategies and testing their associations with distress. It also
refers to the spouses’ perceptions of each other’s coping and their
effects on adjustment. Chapter 6 assesses the distress and adjustment to
illness of forty-one parents of adult cancer patients, and their associa¬
tions with social support. Chapter 7 assesses the distress of primary
caregivers of sixty-seven widowed cancer patients who died at home or
in a hospice.
Each of the empirical chapters (4, 5, 6, and 7) presents theoretical
background on the specific type of caregiver roles in the context of
cancer-that of the spouse and the parent of an adult child; a descrip¬
tion of the sample, research instruments and procedure; and findings
and conclusions. Every study contains a description of caregiver psy¬
chological distress as measured by nine BSI subscales (Derogatis &
Spencer, 1982). Caregiver distress is also compared with normative
data and with patient distress. The primary goal of the research was to
discover the possible associations between caregiver personal resources
(e.g., age, gender, education, work, etc.), the patient’s psychological dis-
X Cancer and the Family Caregiver
tress, adjustment to illness and medical variables, and caregiver adjust¬

ment.
Part Three examines two important practical issues. The first, pre¬
sented in Chapter 8, is intervention for reducing caregiver distress.
Caregiver intervention and family therapy are compared through a
review of the literature on intervention for chronically ill persons and
for caregivers of cancer patients. Two interventions developed by the
authors for reducing cancer distress are discussed: an individual pro¬
gram tailored to the various phases of the illness—diagnosis, medical
treatment, follow-up, recurrence and the terminal phase; and a support
group program for caregiver distress. Intervention programs related to
the bereavement process are also explored, featuring counseling and
therapy based on the model described in the literature.
The second issue, presented in Chapter 9, is the ethical question of
caregiver involvement in the patient’s medical decisions. The discus¬
sion focuses on doctor-patient-caregiver relationships based on three
models of the doctor-patient relationship: paternalism, consumerism,
and mutuality. The importance of maintaining the patient’s autonomy
in every stage of the relationship with the caregiver is highlighted. This
issue becomes more complex as the illness progresses, when the
patient’s loss of physical independence exacerbates the caregiver’s bur¬
den. A decision by the patient to undergo experimental medical treat¬
ment that will engender debilitating side effects and increase
dependency, the patient’s stated preference to die at home, or both are
examples of issues that have a severe impact on caregiver burden.
Although the physician is not obligated by law to take the family care¬
giver’s interests into consideration, unless the caregiver is a court-
appointed guardian, an ethical dilemma may arise over the role of
caregiving as a factor in decisions regarding medical treatment. In the
final chapter of the book, the authors evaluate the state of research in
the cancer caregiver area and suggest directions for future study.
The book integrates three important aspects of the study of the role
and problems of caregivers for cancer patients: theoretical, research,
and practical issues. The analysis of these areas can be useful to clini¬
cians, researchers, medical/psychological social workers, and nurses
by familiarizing them with the spectrum of stresses experienced by can¬
cer patients and their caregivers, and the coping methods that have
proven most effective.
Introduction xi
REFERENCES
American Cancer Society. (1995). Cancer facts and figures. Atlanta: American Cancer
Society.
Ben-Zur, H., Gilbar, O., & Lev, S. (2001). Coping with breast cancer: patient, spouse
and dyad models. Psychosomatic Medicine., 63 (1), 32-39.
Biegel, D.E., Sales, E., & Schulz, R. (1991). Family caregiving in chronic illness. Newbury
Park, CA: Sage.
Carver, S.S., Scheier, M.F., & Weintraub,J.K. (1989). Assessing coping strategies: A
theoretically based approach. Journal of Personality and Social Psychology, 56 (2),
267-288.
Derogatis, L.R., & Lopez, M.C. (1983). The Psychosocial Adjustment to Illness Scale:
Administration, scoring and procedures manual. Baltimore: J. Clinical Research.
Derogatis, L.R., & Spencer, P.M. (1982). The Brief Symptom Inventory (B SI): Adminis¬
tration, scoring and procedures manual. Baltimore: J. Clinical Research.
Haley, W.E. (1997). The family caregiver’s role in Alzheimer’s disease. Neurology, 48
(5), Suppl. 6, 25-29.
Lazarus, R.S. (1999). Stress and emotion: A new synthesis. New York: Springer
Lazarus, R.S., & Folkman, S. (1984). Stress appraisal and coping. New York: Springer.
Steketee, G. (1997). Disability and family burden in obsessive-compulsive disorders.
Canadian Journal of Psychiatry, 42 (9), 919-928.
CONTENTS
Page
Preface..
Introduction.vii
List of Figures .xvii
List of Tables.xix
PART ONE: THEORETICAL ISSUES: CAREGIVING

RESEARCH AND THEORY
CHAPTER 1. CAREGIVERS OF ILL PERSONS .5

Introduction.5
Differences Between Caregiving and Social Support.6
Structural Aspects in the Caregiver Role: Role
Definition and Role Conflict.7
Process Aspects in the Caregiver Role:
Stress and Coping .9
Caregiver Coping with Illness: Which Caregivers
Do Best? .13
Conclusions .21
References .23
CHAPTER 2. THE CAREGIVER OF THE CANCER PATIENT .. .31

Introduction .31
Cancer as a Cause of Stress .32
Patient Coping with the Threat of the Illness.36
Caregiver Coping with the Threat of the Illness.37
Cancer Caregiver Coping Models.39
Cancer Caregivers Coping with the Illness:
Which Caregivers Do Best?.40
Personal Resources: Caregivers and Patients .48
xiii
xiv Cancer and the Family Caregiver
Social and Family Support.51

Quality of Marital Relationship.52
Conclusions .54
References . 55
PART TWO: EMPIRICAL RESEARCH:

CAREGIVERS AND CANCER
CHAPTER 3. MEASUREMENT ISSUES.65

Stress Measurement.65
Response-Oriented Measurements.66
Interaction-Oriented Measures.73
Measurement of Psychosocial Adjustment to
Physical Illness.80
Conclusions .83
References .83
CHAPTER 4. PRIMARY CAREGIVER DISTRESS:

THREE STUDIES .87
Distress of Spouses of Breast Cancer Patients.87
Introduction.87
Research Aims and Hypotheses .91
Method.92
Results .96
Discussion.103
References .105
Distress of Spouses of Gynecological Cancer
Patients.108
Introduction.108
Research Aims and Hypotheses .Ill
Method.Ill
Results.114
Discussion.118
References .121
Distress of Spouses of Elderly Cancer Patients.123
Introduction.123
Method.126
Results .129
Contents xv
Discussion.131
References .133
CHAPTER 5. PRIMARY CAREGIVER COPING WITH

BREAST CANCER.137
Introduction .137
Research Aims and Hypotheses.141
Method.143
Results.146
Discussion.156
References.161
CHAPTER 6. SECONDARY CAREGIVER DISTRESS:

PARENTS OF ADULT CANCER PATIENTS .165
Introduction .165
Method.169
Results.174
Discussion.180
References .184
CHAPTER 7. THE SPOUSE CAREGIVER AND THE

BEREAVEMENT PROCESS .189
Introduction .189
Method.193
Results.197
Discussion.201
References .205
PART THREE: PRACTICAL ISSUES
CHAPTER 8. PSYCHOSOCIAL INTERVENTION FOR

REDUCING CAREGIVER DISTRESS.213
Introduction .213
Family Caregiver Intervention in the Various Phases
of the Illness.218
A Problem-Solving Intervention Model of
Caregiving Training.223
XVI Cancer and the Family Caregiver
Intervention Program for the Bereaved Caregiver:

Counseling and Therapy.228
Conclusion.242
References . 242
CHAPTER 9. DOCTOR-CANCER PATIENT-FAMILY

CAREGIVER RELATIONSHIP
AND MEDICAL ETHICS ISSUES.249
Introduction.249
Doctor-Patient Relationship Models: Implications
for Family Caregiver Involvement.250
Patient Autonomy and Caregiver Involvement.257
The Doctor, the Incompetent Cancer Patient
and the Family Caregiver .262
Conclusions .264
References .265
CHAPTER 10. SUMMARY AND CONCLUSIONS.269

Theoretical Background .269
Measurement Issues.270
Research Design Issues.271
Findings.271
Intervention .275
Ethical Issues .276
Future Directions for Family Caregiver Research.277
References.277
Name Index.279
Subject Index.287
FIGURES
Page
Figure 1.1. The Appraisal Model.10
Figure 1.2. The ABCX Model Applied to Caregiving .12
Figure 2.1. Cancer Caregiver Distress Model .41
Figure 4.1. T Score Means for Spouses and Patients for the Nine
BSI Subscales and GSI in the Breast Cancer Sample .98
Figure 4.2. Path Analyses of Spouses’ GSI and PSA Using Patients’
Attributes as Independent Variables in the Breast
Cancer Sample .101
Figure 4.3. T Score Means for Spouses and Patients for the Nine
BSI Subscales and GSI.115
Figure 4.4. Path Analyses of GSI and PSA of Spouses of Cancer
Patients, Using Patients’ Attributes as Independent
Variables.119
Figure 5.1. T Score Means of Self-Coping Strategies of Spouses and
Patients .148
Figure 5.2. Means of Spouses’ and Patients’ Self-Coping and
Perceptions of Other-Coping.149
Figure 5.3. Path Analyses for Spouses’ GSI and PSA Using
Self-Coping and Demographic Attributes as the
Independent Variables.155
Figure 5.4. Associations of Spouses’ and Patients’ Self-Coping and
Their Perceptions of Other-Coping with Distress and
Adjustment.156
Figure 6.1. T Score Means for Parents and Patients for the Nine
BSI Subscales and the GSI.176
Figure 6.2. Path Analyses of Parents’ GSI and PAIS, Using Patients’
and Parents’ Attributes as Independent Variables.180
Figure 7.1. T Score Means of Widowers and Widows.198
xvii
xviii Cancer and the Family Caregiver
Figure 7.2. Path Analyses of TRIG-present and PAIS.203

Figure 9.1. The Triadic Doctor-Patient-Family Caregiver
Relationship Model .251
Figure 10.1. Cancer Caregiver Distress Model .. .273
TABLES
Page
Table 3.1. Demographic Attributes of Men and Women in the
Israeli Sample .70
Table 3.2. Means, Standard Deviations, Ranges and Cronbach
Alpha Levels of the Israeli BSI Subscales.71
Table 3.3. Means, Standard Deviations and BSI Subscales for
Israeli Men and Women .71
Table 3.4. Means and Standard Deviations of the Fourteen Coping
Subscales and Two Main Coping Scales.76
Table 3.5. Results of Factor Analysis of Fourteen Coping Subscales ... .77
Table 3.6. Means and Standard Deviations for COPE Subscales
for Men and Women.78
Table 4.1. Means, Standard Deviations, and Percentages of
Demographic Variables for Spouses and Patients in
Breast Cancer Sample.93
Table 4.2. Medical Variables and Involvement in Decision Making
for Breast Cancer Sample.94
Table 4.3. Means, Standard Deviations, and Alpha Levels of BSI
Subscales and BSI and PSA Total Scores for
Demographic Variables for Community Husband and
Wife Sample .96
Table 4.5. Means, Standard Deviations, and Alpha Levels of Four
BSI Subscales and PSA Scores for Community
Husband and Wife Sample.96
Table 4.6. T Score Means, / Values and Correlations between
Spouses’ and Patients’ Adjustment Scores in the
xix
xx Cancer and the Family Caregiver
Table 4.7. Correlations Between Demographic Variables of

Spouses and Patients, Psychological Distress, and
Psychosocial Adjustment in the Breast Cancer Sample.99
Table 4.8. Correlations between Illness-Related Variables and
Spouses’ Adjustment in the Breast Cancer Sample .100
Table 4.9. Comparisons and Correlations of Husbands’ and Wives’
T Score Means in the Community Sample .102
Demographic Variables for Spouses and Patients .112
Table 4.11. Means, Standard Deviations, and Alpha Levels of the
BSI Subscales and Total Scores for Spouses and Patients . . .113
Table 4.12. Means and Standard Deviations of the Psychosocial
Adjustment to Illness Scale (PAIS) for Spouses and
Patients.113
Table 4.13. T Score Means, t-Values and Correlations Between
Spouses and Patients .115
Table 4.14. Means of PAIS Subscales of Spouses and Patients.116
Table 4.15. Pearson Correlations between Distress Levels and
PAIS Subscales Scores for Spouses and Patients .116
Table 4.16. Correlations Between Patient’s and Spouse’s
Demographic Variables, Psychological Distress and
Psychosocial Adjustment.117
Background and Illness Variables of Spouses and
Patients.128
Table 4.18. Means, Standard Deviations and Alpha Levels for
Spouses’ and Patients’ Measures.128
Table 4.19. Correlations between Spouses’ and Patients’ Burden
and Background Variables .130
Table 4.20. Correlations between Spouses’ and Patients’
Attributes, IADL, GSI and Burden .130
Table 5.1. Means of Reports on Self-Coping and Other-Coping
by Spouses and Patients for Fifteen Coping Strategies.145
Table 5.2. Means of TScores of Spouses’ and Patients’ Self-Coping,
£-Test Results and Pearson Correlations .147
Table 5.3. Means and Standard Deviations of Spouses’ and
Patients’ Problem-Focused and Emotion-Focused
Self-Coping and Perceptions of Other-Coping.149
Tables xxi
Table 5.4. Pearson Correlations Between Spouses’ and Patients’

Problem-Focused and Emotion-Focused Self- and
Other-Coping Scales.150
Table 5.5. Pearson Correlations Between Spouses’ and Patients’
GSI, PSA, and Self- and Other-Coping Strategies.151
Table 5.6. Pearson Correlations Between Self-Coping Strategies and
Spouses’ Distress and Adjustment.152
Table 5.7. Pearson Correlations Between Perceptions of
Other-Coping Strategies and Spouses’ Distress and
Adjustment.153
Table 5.8. Correlations Between Spouses’ and Patients’
Demographic Variables, Self-Coping and
Other-Coping Strategies .154
Table 5.9. Means and t-Tests for Comparisons of Breast Cancer
and Community Samples: Husbands’ and Wives’
Self-Coping Data.157
Table 5.10. Means and t-Tests for Comparisons of Breast Cancer
and Community Samples: Husbands’ and Wives’
Other-Coping Data.158
Demographic Variables for Parents and Cancer Patients . . . .170
Table 6.2. Psychological Adjustment (BSI) Means of Parents
and Patients .171
Table 6.3. Means, Standard Deviations, and Alpha Levels of
Parents and Patients on the PAIS .172
Parents’ and Patients’ Perceived Social Support (MSPSS) . . .172
Table 6.5. Means, Standard Deviations and Alpha Levels of the
Contact between Generations Battery (CGB) Scales .173
Table 6.6. Perception of Assistance of Cancer Patients as Described
by Parents and Patients Following Diagnosis .175
Table 6.7. T Score Means, t-Values and Correlations between
Parents’ and Patients’ Adjustment Scores as
Measured by the BSI.176
Table 6.8. Means, Standard Deviations, t-Tests and Correlations
for Parents’ and Patients’ PAIS Subscales.177
Table 6.9. Pearson Correlations Between BSI Levels and PAIS
Domains for Parents and Patients .178
xxii Cancer and the Family Caregiver
Table 6.10. Correlations Between Parents’ and Patients’ Demographic

Variables, Psychological Distress (GSI) and Psychosocial
Adjustment (PAIS) Totals.179
Table 7.1. Demographic Variables of Widow/ers.194
Table 7.2. Demographic and Illness Variables of Deceased Patients . . .195
Table 7.3. Caregiver Variables...... . . .v. . .195
Table 7.4. Means, Standard Deviations, and Alpha Levels of the
BSI Scales .196
PAIS, TRIG, and Communication Scales .197
Table 7.6. T Score Means of Widowers and Widows and tf-Tests
Results .198
Table 7.7. Means of PAIS, Bereavement (TRIG) and Communication
Measures by Gender.199
Table 7.8. Correlations between Demographic or Illness Variables
and GSI, PAIS, and TRIG.200
Table 7.9. Pearson Correlations between PAIS Subscales and GSI,
Bereavement (TRIG), and Communication Measures .201
Table 7.10. Pearson Correlations between Distress, Bereavement
(TRIG), and Communication Measures 201
CANCER AND THE
FAMILY CAREGIVER
* 1
Part One
THEORETICAL ISSUES:
CAREGIVING RESEARCH
AND THEORY
Chapter 1
CAREGIVERS OF ILL PERSONS
INTRODUCTION
O ver a thousand studies have been published to date on the care¬

giver role, caregiver distress, and caregiver burden. They include
research on type of population in need of care (care receiver), type of
caregiver (primary/secondary), variables that predict caregiver distress,
caregiver role or tasks, and care receiver state (physical and mental).
Research until the early 1980s dealt intensively with caregivers of the
elderly, especially those in a state of cognitive impairment (i.e., those
with Alzheimer’s and dementia), and with caregivers of chronically ill
children, especially those with physical disabilities and mental retarda¬
tion. Research on caregiving to patients in the terminal phase of illness
(e.g., cancer and AIDS) became a focus in the latter 1980s and there¬
after. During the 1990s, a large number of studies also dealt with care¬
givers of patients with brain damage/injury and mental health
problems.
The intensity of caring for an ill member of the family affects the
entire immediate family, and often more distant relatives and friends as
well. The variations and consequences of caregiving are distributed
through the population equally, that is, adult-child, spousal, child-par¬
ent, and so forth, with far-reaching implications. It is a concern that
extends beyond the boundaries of clinical interest, which was the
domain of early research. Increasingly, it raises both logistic and soci¬
ological issues in the health and social service agencies of every com¬
munity. Caregiving, therefore, is an issue that needs to be understood
on a firm theoretical and empirical basis.
5
6 Cancer and the Family Caregiver
The caregiver of a member of the family with a chronic or terminal

illness is in a perpetually stressful situation. The patient’s illness, com¬
bined with the disabilities or increased dependency caused by age, in
many cases, constitute a major stressor for the entire family generally
and for the caregiver in particular. The stress is intensified by such
patient attributes as disability in self-care, cognitive impairment, behav¬
ior problems, and psychological distress. The most frequendy identi¬
fied stressors associated with Alzheimer’s patients, for example, are
memory problems, disability in self-care, and disruptive behavior such
as night waking or daytime wandering (Lawlor, 1995). Frequently cited
stressors associated with the chronically mentally ill are intrusive and
disturbing behaviors such as unusual eating and sleeping patterns and
behaviors relating to poor task function (see literature review in Dunkin
& Anderson-Hanley, 1998). In the case of cancer or AIDS, the stressor
is more likely to be the patient’s physical dependency arising from the
side effects of medical treatment (Oberst et al., 1989; Brown & Stetz,
1999).
To sum up, the caregiver, like the patient, is in a stressful situation
because of the threat to the life of the loved one (e.g., in the case of can¬
cer or AIDS), loss of the previous relationship, decrease of independ¬
ence, the prospect of a decline in income, alterations in family roles,
and cognitive disruption (e.g., in the case of dementia or Alzheimer’s)
(Williamson & Shaffer, 1998).
DIFFERENCES BETWEEN CAREGIVING AND

SOCIAL SUPPORT
Do the terms caregiving and social support refer to different or similar

things? Most research based on social support models links such sup¬
port to coping with a stressful event aided by some form of transacted
relationship between individuals as a main contribution. An early def¬
inition (Shumaker & Brownell, 1984) viewed social support as “an
exchange of resources between at least two individuals perceived by
the provider or the recipient to be intended to enhance the well-being
of the recipient” (p. 17). A broader definition of social support (Lin,
1986) is “perceived or actually instrumental and/or expressive provi¬
sions supplied by the community, social network, and confiding part-
Caregivers of III Persons 7
ners” (p. 18). The importance of clarifying differences in definitions of

and approaches to social support was pointed out by Tardy (1985) in
terms of specifying direction (support given and/or received), disposi¬
tion (availability versus utilization of support resources), description of
support vs. evaluation of satisfaction with support, content (form taken
by support), and network (social system/s that provide the support). A
later study (Kaplan et al., 1993) suggested social support, as it appears
in epidemiological studies, as the number of social contacts maintained
by an individual, or the extensiveness of a social network of communi¬
cation and mutual obligation.
Broadly, social support is based on mutually supportive relation¬
ships. Caregivers, however, are only partially involved in a mutually
supportive relationship because in most cases the receiver cannot give
back support. The main caregiver role is essentially to extend help to
the care receiver. A widespread example is daughters of independent¬
ly functioning elderly widowed mothers, who provide their mothers
with emotional reassurance, phone contact, visits, and transportation
(Pierce et al., 1996). A broader definition of caregiver (Biegel et al.,
1991) covers responsibility for home care, physical upkeep, compan¬
ionship, and supervision—specifically, such daily care as bathing, dress¬
ing, and feeding, and such daily activities as shopping, food
preparation, housekeeping, laundry, transportation, handling finances,
and taking responsibility for medication. Typically, these caregiver
tasks are carried out with affection, love, and feelings of warmth. The
caregiver gives both instrumental and emotional support intensively, in
most cases for long periods (Haley, 1997).
STRUCTURAL ASPECTS IN THE CAREGIVER ROLE: ROLE

DEFINITION AND ROLE CONFLICT
As research on the caregiver role for Alzheimer’s patients shows

(see literature review in Haley, 1997), both clinicians and researchers
define caregiving as a status in society that is similar in many ways to
that acquired during other stages of adulthood, such as becoming a
spouse, a parent, or a retiree. An individual who assumes the care of an
elderly or ill relative is expected by society to provide both physical
and emotional support for the care recipient (Barer & Johnson, 1990).
Caregivers fall into two categories: primary and secondary. The pri¬
mary caregiver may be defined as the “gatekeeper” (Horowitz, 1985;
Stommel et al., 1995) and assumes the main responsibility for care.
When care demands are intense, the primary caregiver relies in most
cases on help from a secondary caregiver, although the primary care¬
giver remains involved in the task (Horowitz, 1985). Both primary and
secondary caregivers play an important part in the well-being of the
care receiver by providing social, emotional, and physical support.
This responsibility creates a stressful situation for the caregivers, often
evoking symptoms of psychological distress (Steffen et al., 1997). Such
distress begins at the time that the elderly relative or chronically ill
patient has difficulty in functioning. In the case of mental illness or cog¬
nitive impairment, it begins when a formal diagnosis is made; in the
case of chronic or terminal illness, it begins on the discharge of the rel¬
ative from the hospital (Pillemer & Suitor, 1996).
Several types of conflict typically arise during caregiving. One type
relates to the multiple roles of the caregiver in his/her life-cycle stage,
that is, as spouse, parent or child, and so forth (Marks, 1998; Stephens
et al., 2001). For example, an employed middle-aged married woman
cannot stop working in order to care for her parent, even if she wants
to, as her salary is a vital part of her family’s income. Moreover, if she
has younger children, it is difficult for her to take care of her parent
after work in the evenings. Another example is the parent of a chroni¬
cally disabled or ill child who cannot stop working in order to take care
of the child, or who must continue to fulfill a parental role to other chil¬
dren.
An exceptional finding is that of Loomis & Booth (1995), who
report that multigenerational caregiving responsibilities had litde or no
effect on caregiver well-being. One explanation suggested by them is
that since the adult child caregiver who has children knows both the
offspring and the parents intimately-their needs, expectations, strong
points, and foibles-there are few surprises regarding the offspring who
requires care when the additional care burden is taken on. Moreover,
a selection effect probably takes place, namely, those most able to take
on the responsibility of caregiving do so.
Another type of conflict is the changing role relationship. The care¬
giver daughter of an elderly parent, for example, is forced to deal with
the major change in the traditional role of her parent as caretaker. Now,
the role is reversed, and the caretaker has become the care receiver.
Consequently, the parent-child relationship changes. This shift

becomes particularly difficult when the parent requires help in self-care
such as bathing, dressing, feeding, and often toileting (Haley, 1997).
Similar difficulties arise in caring related to intimate functions in the
case of an ill spouse. Obviously, these situations, namely, multiple roles
on the one hand, and changes in the content of the roles on the other,
cause psychological distress in the caregiver.
PROCESS ASPECTS IN THE CAREGIVER ROLE:

STRESS AND COPING
The Appraisal Model
The cognitive model developed by Lazarus and Folkman (1984)

has become the core model of stress and coping in the area of person¬
al encounters with stress. The model includes four classes of variables
that affect the person who is in a stressful transaction with the environ¬
ment: appraisals, coping modes, environmental variables and person¬
al variables (see Figure 1.1). These key components, in combination,
are assumed to affect adaptation outcomes that include short-term dis¬
tress, mood and emotion, as well as long-term consequences such as
physical health, well-being, and social functioning.
Primary appraisal is the assessment of the meaning of the per¬
son-environment encounter for the well-being of the individual. Once
an event is judged to be stressful, it will be evaluated in terms of con¬
veying harm/loss, threat, or challenge. Secondary appraisal is the eval¬
uation of one’s coping capability, with the assessment of personal
resources being the main determinant of ability to overcome the threat
the event entails or adapt the to harm/loss already done. A third
process—reappraisal-also occurs, during which the meaning of the
threat or loss changes, depending on the two previous types of
appraisals as well as on the coping strategies used (Lazarus, 1999).
The coping process represents behavioral and cognitive efforts to
deal with stressful encounters. Such coping strategies were classified by
Lazarus and Folkman (1984) and Lazarus (1999) as either problem
focused or emotion focused, thereby delineating the two main func¬
tions of coping as dealing with the problem or with its emotional and
FIGURE 1.1. The Appraisal Model.
Note: Based on Lazarus (1999), and Lazarus and Folkman (1984).
physiological outcomes, respectively. In addition, two main groups of

variables that act as antecedents of appraisal have been described:
environmental variables and personal variables. Environmental vari¬
ables include the demands of the situation, constraints on coping, and
external resources such as social support. In additional, formal aspects
of the situation—such as its novelty, ambiguity, and controllability—may
affect both appraisal and coping efforts. Personal variables include such
factors as goals, values, and beliefs, in addition to personal resources
that affect the stress and coping process.
Appraisal and coping during acute stressful encounters have been
studied extensively, but less research has been done on chronic stress
and how people cope with it (Gignac & Gottlieb, 1997). Lazarus (1999)
makes a distinction between chronic and acute stress: acute stress is
characterized by harmful or threatening time-limited events, while
chronic stress arises from “harmful or threatening, but stable, condi¬
tions of life, and from the stressful roles people continually fulfill at
work and in the family” (p. 114). Chronic or terminal illness creates a
long-term stressful condition not only for the patient but for the entire
family. This arises from the continuous threat of losing the loved one,
in addition to the threat caused by disability and suffering, which may
result in reduced physical, cognitive, behavioral, and mental function¬
ing of the ill person. The situation induces ongoing appraisals of
harm/loss as well as threat: the family, and the caregiver in particular,
must adapt to the loss of a relationship, living under the perpetual
threat of the progressive disability and ultimately death of their close
family member.
In the context of chronic or terminal illness, caregivers develop a

better understanding of the efficacy of various kinds of appraisals and
acquire a meaningful structure for these appraisals by placing them in
a framework of coping goals. Ideally, the coping goals that caregivers
set for themselves are reflected in their evaluations of their progress in
coping with caregiving and in their appraisals of effective ways of cop¬
ing (Biegel et al., 1991). However, a characteristic aspect of chronic ill¬
ness is that improving the patient’s situation is often impossible.
Moreover, many types of diseases are ambiguous in terms of time span
and symptoms and are difficult to deal with. In many cases, coping
with the situation is more a question of tolerating and managing it than
eliminating or controlling it (Folkman, 1993; Lazarus, 1999). There¬
fore, the methods of coping with chronic illness, such as those
described by Gignac and Gottlieb (1997), are mostly emotion focused
(i.e., acceptance, positive framing, avoidance), with the significant
exception of such problem-focused coping strategies as seeking help.
People use a variety of resources to aid in the coping and adjust¬
ment process. Lazarus and Folkman (1984) and Moos and Schaefer
(1993) highlight external resources such as finances and social support,
and internal resources such as energy, intelligence, and personality dis¬
position. These external and internal resources are vital in the coping
and adjustment process with chronic illness.
The ABCX Model of Coping with Stress
Analyzing caregiver distress on the basis of Lazarus and Folkman’s

(1984) coping-with-stress model has the limitation of excluding an
important group of variables that impact on caregiver distress-the
patient’s variables, which are explored in most caregiver studies. An
adjusted model of caregiver distress that takes into account variables
related to patients was presented by Biegel et al. (1991), based on the
ABCX model developed by Hill and associates (Hill, 1949; Hansen &
Hill, 1964). It describes the impact of stressors on the family system (see
Figure 1.2). As applied to an analysis of caregiver well-being, the ABCX
model consists of: A. Caregiver stressors, namely, patient’s variables
(health, cognitive status, Activity Daily Log [ADL] status) and other life
events to which the caregiver may be exposed; B. Caregiver’s personal
resources (socioeconomic status, health, coping skills) and social/famil¬
ial resources (social integration, assistance received, availability of confi-
dant); C. Perceptions of the caregiving situation, including burden, guilt,

role strain, uplifts, and sense of mastery; and X. Caregiver mental/phys-
ical health crises, including depression, anxiety, weight loss, and illness.
Figure 1.2. The ABCX Model Applied to Caregiving.
X. Mental/Phvsicai Health Crises t
A. Stressors B. Resources
• Health of patient • Personal
• Cognitive status Health
• ADL status Socioeconomic status
• Other life events Coping skills
• Social/Familial
Social integration
Assistance received
Availability of confidant
C. Perceptions of X. Mental/Physical
Caregiving Situation Health Crises_
• Burden • Depression
• Guilt • Anxiety
• Role strain • Weight loss
• Uplifts • Illness
• Sense of mastery
Note: Based on Biegel et al., 1991.
This model bears a strong resemblance to the coping-with-stress

model, differing from it primarily in its emphasis on the family as a
conceptual unit. An advantage of this model is that it helps focus on the
many family-relationship variables that are likely to affect the caregiv-
ing process. In addition, it highlights the possibility of the caregiver’s
exposure to life stressors that are independent of caregiving responsi¬
bilities and that may have a negative impact on caregiver well-being
(Biegel et al., 1991). However, the model eliminates appraisal (although
perception of caregiving may be viewed as similar to appraisal) and the
coping process.
CAREGIVER COPING WITH ILLNESS:

WHICH CAREGIVERS DO BEST?
Stressors
Research on the patient’s health as a caregiver stressor has focused

less on caregivers of dementia or Alzheimer’s patients than on care¬
givers of other recipients such as the geriatric population or the wid¬
owed. The impact of the patient’s health and cognitive status, however,
has a direct bearing on degree of dependency on the caregiver (e.g., in
activities of daily life) and therefore on caregiver distress. Many studies
show positive associations between patient behavior, dysfunction, and
caregiver distress (see literature review, Haley, 1997; Teri, 1997; Logs¬
don et al., 1998). Extant research links patients’ cognitive impairment
and caregiver distress (Donaldson et al., 1998; Logsdon et al., 1998; Vet¬
ter et al., 1999; Zerit & Greene, 1999); patient’s dependency (namely,
difficulties with self-care and other home-based task activities at six
months, and safety and outdoor activities at twelve months after an
injury) and caregiver distress (Semiyen et al., 1998); stroke patients’ dis¬
tress and caregiver distress (Blake & Lincoln, 2000); and neuropsychi¬
atric symptoms in patients with Alzheimer’s disease and caregiver
distress (Kaufer et al., 1998). Conversely, a study on caregiving for the
elderly in the community found that the seriousness of the illness had a
direct and positive relationship to perceived care abilities (Clark, 1997).
Bindings regarding caregivers of traumatic brain injury patients,
however, are not uniform. Indices of injury severity did not predict
more symptoms of psychological distress in one study (Kreutzer et al.,
1994), while in another (Semiyen et al., 1998), factors associated with

caregiver distress included a number of perceived problems at six
months postinjury, overall level of disability, and certain aspects of
functional independence at both six and twelve months. In contrast,
patient dependency, along with emotional difficulties, particularly
anger and apathy, were found to cause the greatest distress to care¬
givers (Marsh et al., 1998), although other research (Gervasio &
Kreutzer, 1997) showed that time since injury and number of days in a
coma did not affect caregiver level of distress.
A study of the association between caregiver distress and care
receiver function of a spouse with multiple sclerosis indicates that
patient incontinence, pain, motor problems, sudden mood change, and
tendency to upset other people predicted amount of caregiver distress
(Knight et al., 1998). Research by Triemstra et al. (1999) on the burden
of the caregiving partner of hemophilia patients indicates that the most
burdensome aspects were the patient’s pain and the risk of viral infec¬
tions due to treatment.
Perceptions of Burden
One aspect of the perception of the caregiver situation, according to

the ABCX model, is burden. Defining the term burden in the context of
caregiving implies a wider and more inclusive concept than that usually
attached to the word. A task definition offered by Poulshock and Deim-
ling (1984) is that burden is related to the subjective approach taken by
the caregiver toward the full range of problems involved in caregiving.
An analysis of the extant research indicates that several variables
affect the perception of burden. Alspaugh et al. (1999) highlight the
patterns of risk for depression of dementia caregivers over one year
(consistently symptomatic [w=88], consistently symptomatic [n=40],
changing risk [ra=60]) based on the hypothesis that their depression can
be predicted by objective (behavior problems of ill relative) and sub¬
jective (role captivity and overload) primary stress. Their findings indi¬
cated that primary stressors differentiated between caregivers who
remained at low levels of symptomatology over the course of the year
from those who were at risk for experiencing a depressive disorder.
Zarit et al. (1986) found that burden was interpreted by the caregiver
based on the extent to which caregiving was injurious to the caregiver’s
health and socioeconomic status. Another key is the impact of the care-
giver’s inner resources on the approach to burden (Gallagher-Thomp-

son & Powers, 1997; Patrick & Hayden, 1999): if the caregiver’s task
seems too difficult personally, the caregiver may feel distress. The care¬
giver who feels more distress or perceived stress may feel subjective
burden more acutely. However, a study of social context (Jenkins &
Schumacher, 1999) indicates no significance for objective and subjec¬
tive levels of burden. Moreover, in research on caregivers of patients
with traumatic brain injury, no consistent relationship was found
between the prevalence of various types of objective burden and the
level of subjective distress that resulted from it (Marsh et al., 1998). By
contrast, caregivers of patients with mental illness reported much less
subjective (perceived) than objective burden, although the relationship
between the two types of burden was not consistent across the various
areas in which clients needed help (Jones et al., 1995; see also literature
review by Heru, 2000).
In another area, George and Gwyther (1986) found that spouse
caregivers reported more stress and rated their well-being as lower than
grown offspring caregivers. Johnson and Catalano (1983), by contrast,
found that offspring perceived more strain in their caregiving role than
spouse caregivers. Rankin (1990) reported that a major source of stress
for caregiver daughters was the multiplicity of tasks and responsibilities
in their caregiver role, while for spouse caregivers limited personal
resources was the dominant source of stress.
Appraisal
Most of the research on the correlation between appraisals and the

psychological distress/well-being of the caregiver of demented or
Alzheimer’s patients indicates an association between these two ele-
ments-a high level of appraisal/pressure correlates with a high level of
psychological distress (Clark & Hartman, 1996; Haley, 1997; Levesque
et al., 1998; Pot et al., 1998; Stewart & Archibald, 1998). In a similar
vein, a study of caregivers of multiple sclerosis patients (Knight et al.,
1997) found that individual differences in burden accounted for pri¬
marily by caregiver appraisal of the patient’s symptoms, perceived
social support and satisfaction with coping. Research by Joyce et al.
(2000) indicated that negative appraisal can be explained by a combi¬
nation of stressor variables, patient symptoms, and disability, which
heighten this appraisal, and mediating variables (social support, service
inputs) that diminish it in over one-third of the caregiving experiences

studied. An exception to the weight attached to caregiver appraisal is
reflected in a study by Gignac & Gottlieb (1996), who found that the
strong association between behavioral problems and psychological dis¬
tress was not explained by perceived pressure.
The Coping Process
Many studies have borne out the finding that caregivers consciously
attempt to mold their perceptions by adopting various thought patterns
and behaviors, and that the choice of coping strategy predicts well-being
(Patrick & Hayden, 1999), adjustment to the illness (Pakenham, 1998), or
depression symptoms (Steffen et al., 1997; Li et al., 1999; Grant et al.,
2001). Gignac and Gottlieb (1997) drew up a detailed list of the classes
of coping strategies used by caregivers of demented relatives, as well as
types of appraisals of coping efficacy. Most of the coping cognitions and
behaviors are emotion focused. Some are considered more adaptive or
functional (Carver et al., 1989)—acceptance, positive framing, optimistic
future expectancies or humor, and others are seen as less adaptive—
avoidance/escape. Specifically, findings by Li et al. (1999) indicate that
the use of emotion-focused coping may explain the rise in depression
levels over time among daughter caregivers. Similarly, the results of
research by Rose et al. (1997) indicate that caregivers of Alzheimer’s
patients in high distress were more likely to use the emotion-focused
coping strategy of wishfulness, whereas caregivers in low distress were
more likely to accept their distress and make use of instrumental coping.
In the same vein, findings by Li et al. (1999) show that caregiving daugh¬
ters of an aged parent who have a high level of mastery are more likely
to use problem-focused coping strategies, leading to reduced depression,
while daughters with a lower level of mastery are more likely to use
emotion-focused coping, leading to greater depression.
Personal Resources
Personal caregiver resources are vital in the process of coping with

caregiving, although research findings do not always indicate a signifi¬
cant correlation (Schene et al., 1998; Berg-Weger et al., 2000). Person¬
al resources studied most extensively are gender, age, education, and
mastery.
Gender
Research on gender differences in the provision of care to an eld¬

erly relative consistently shows that females assume a greater role in
providing care for elder relatives than males (see literature review in
Collins & Robert, 1997; Ford et al., 1997; Lee, 1999). More specifical-
ly, Cavanaugh (1998) found that 75% of all caregivers are women—
wives, daughters, sisters, and daughters-in-law. Since the woman’s role
during her life is likely to have involved personal care for others, the
woman generally becomes the primary caregiver for elders. Even when
the man is the primary caregiver, he is likely to perform the instru¬
mental tasks—financial arrangements or transportation-and use the for¬
mal services of caregivers available in the community for personal care.
A relevant question that arises is whether differences in psycholog¬
ical distress or well-being exist between male and female caregivers.
Overall, the literature points to gender differences in caregiving gener¬
ally, and specifically to greater distress on the part of the female care¬
giver (Clark & Hartman, 1996; Collins & Robert, 1997; Rose et al.,
1997; Teri, 1997; Donaldson et al., 1998; Kaufer et al., 1998; Sparks et
al., 1998; Webb et al., 1998; Beeson et al., 2000). Several exceptions to
this trend, however, indicate that male caregivers of schizophrenic
patients had great difficulty in social performance (Jenkins & Schu¬
macher, 1999); male caregivers of female relatives with traumatic brain
injury displayed more distress than female caregivers (Gervasio &
Kreutzer, 1997); and burden predicted mental health for husbands only
and not for wives or daughters, although worry was a significant pre¬
dictor of daughters’ mental health (Sparks et al., 1998). By contrast,
findings by Schene et al. (1998) indicated no significant differences in
gender regarding degree of caregiving for psychiatric patients. Similar¬
ly, no gender differences were found in a study of the emotional state
of caregivers for a family member with traumatic brain injury (Knight
et al., 1998). Bookwala & Schulz (2000) reported that although female
and male caregivers may vary in their reports of caregiving stressors,
the complexity of the caregiving experience appears to be quite uni¬
form for both groups.
The greater psychological distress and poorer sense of well-being
among women caregivers, which, nevertheless, is indicated in most of
the research, may be explained by the gender-role theory (Barnett,
1997). Although many studies suggest that involvement in multiple
roles, which is more typical of women, may be beneficial, not all roles
have equally positive effects. Moreover, the effects of the same role
combinations may be different for women than for men. Clearly, the
more roles assumed, the greater the probability of exhausting one’s
supply of time and energy and of confronting conflicting obligations
(Barnett, 1997). For example, the female caregiver of elderly parents
who has multiple roles—as a married woman, mother of small children,
and employed (Cavanaugh, 1998)—is likely to feel more distress as a
caregiver than a male caregiver who is married with small children but,
filling the traditional gender role, remains focused on his employment
rather than on care of the household and children (Barnett, 1997).
Another explanation for greater distress among women caregivers
found in most of the research may rely on the greater difficulty that
men have in expressing painful emotions (fear of lessening their mas¬
culinity) as compared to women (Barnett, 1997).
Age
Fewer studies focus on the impact of age as an independent care¬

giver variable, possibly because of the greater importance of stage in
life cycle rather than age in this context. When the caregiver of an eld¬
erly person is the spouse, who in most cases is also elderly, that care¬
giver may feel greater distress, lower well-being, or poorer health than
a middle-aged spouse caregiver (Harwood et ah, 2000). The middle-
aged caregiver, in turn, may feel under stress because of the multiple
roles stemming from that caregiver’s stage of life. Findings by Kinney
et al. (1995) indicate that younger caregivers are typically in better
physical health, have a larger informal support network, and are more
financially secure than are older caregivers, and thus feel less distress.
Their awareness of these resources explains why younger caregivers
report more caregiving uplift than their older counterparts.
Education
Although education is one of the important personal resources in

coping with stress (Lazarus & Folkman, 1984), little evidence has been
found in the literature of a significant impact by education on level of
caregiver distress. Studies by Clair et al. (1995), Jones et al. (1995), Gal-
lagher-Thompson & Powers (1997), Robinson-Whelen & Kiecolt-

Glaser (1997), Jenkins & Schumacher (1999), Triemstra et al. (1999),
and Steffen & Berger (2000), do not indicate significance. Findings by
Clipp & George (1990), however, show that caregivers who are better
educated and older perceive assistance from friends and family to be a
highly stabilizing factor. The absence of the effect of education on care¬
giver distress in most of the literature may explain why this coping
resource was not included in the adaptive ABCX model of caregiving
by Biegel et al. (1991).
Mastery
An important personal resource for coping with caregiver demand

is locus of control, or mastery (Canning et al., 1996). Clair et al. (1995)
show that caregivers with a limited internal locus of control and many
caregiving demands find their situation particularly burdensome, while
those with a high internal locus of control can withstand the most bur¬
densome of circumstances and experience few mental health conse¬
quences. Similar findings were reported by Yates et al. (1999) in terms
of a positive correlation between mastery and mental health/depres-
sion among caregivers of disabled elders-high levels of mastery or
emotional support were associated with lower risk of depression. Care¬
givers with low mastery, as described by Bookwala & Schulz (1998)
and Miller et al. (1998), reported higher levels of behavioral and func¬
tional impairment and more strain and depressive symptoms associat¬
ed with the caregiving relative, as compared to the caregiver with
higher mastery. However, Kaplan & Boss (1999) found that mastery did
not contribute significantly to an explanation of the depressive symp¬
tom score of spousal caregivers over and above boundary ambiguity.
Informal and Formal Resources
Social support functions primarily as a coping resource (Rowland,

1990). Specifically, the deleterious impact of a stressful situation is mod¬
ified when other people help the caregiver under stress change the care¬
giver’s situation itself. How much social support, and what type (informal
or formal), varies widely in availability. In the case of the caregiver, both
informal support (family members, relatives and friends) and formal sup¬
port (community services) are vital in coping with caring stress.
Informal Social Support
This external resource is widely posited as a valuable resource com¬

prising tangible and intangible forms of assistance that individuals in a
stressful situation receive from both family and friends. Clipp and
George (1990), in a study of caregivers’ needs and patterns of^social sup¬
port, found that “just knowing that support is available is often enough
to provide substantial relief” (p. 110). Most research has shown that
informal social support for caregivers is vital to their well-being (Haley
et al., 1987; Monahan & Hooker, 1995; Schulz et al., 1995; Haley, 1997;
Teri, 1997; Rapp et ah, 1998; Grant et al., 2001; Wuest et al., 2001), even
in a crisis (Liken, 2001). Schulz et ah (1995) indicates that caregivers of
parents with dementia who have greater emotional and social support
usually report low levels of depression and high levels of life satisfaction.
Similarly, Haley et ah (1987) reported that caregivers who are actively
engaged in social and recreational activities such as church attendance
or visiting with family and friends adapt to caregiving with less depres¬
sion than those who are more socially isolated. Findings by Levesque et
al. (1998) show that more conflicts in the exchange of informal social
support (with family and friends), and less frequent formal support (vis¬
its by a professional worker), predicted an increase in psychological dis¬
tress. Social support for caregivers of geriatric outpatients is an important
factor in reducing their depression (Clair et al., 1995), as is such support
for caregivers of the severely mentally ill (Webb et al., 1998) and for
caregivers of heart transplant patients (Canning et al., 1996). Findings by
Rauktis et al. (1995) emphasize that negative social interaction account¬
ed for significant variance in well-being among caregivers of mentally ill
relatives, along with feelings of distress and depression. Two exceptions
to this research trend were studies of caregivers of traumatic brain injury
patients (Knight et al., 1998) and caregivers of persons with Parkinson’s
disease (Miller et al., 1996), both of which found that social support was
not a significant predictor of caregiver distress.
Formal Social Support
Although formal social support is an important coping resource that

may affect not only the quality of caring but also caregiver distress, little
research has been devoted to this issue. Coe & Neufeld’s (1999) qualita¬
tive study exploring perceptions of formal support by caregivers of cog-
nitively impaired adults found that for caregivers whose use of formal
support involved admitting their relative to a long-term care facility, the
phase of making the match was followed by a redesigning of their care¬
giver role. Research by Levesque et al. (2000) on caregivers of institu¬
tionalized elders with dementia indicated that more formal support at
baseline was predictive of decreased psychological distress and increased
positive effect over a period of a year. Winslow (1997) found that the
caregiver role was explained by the direct effect of higher levels of care-
receiver problem behaviors as well as by greater use of formal support.
Relationship with the Care Receiver
The affective quality of the caregiver-care receiver relationship is

an important element in understanding how family members decide
about the care arrangement. Moreover, the family interrelationships
themselves, and relations between the family members and the care
receiver, may impact on psychological distress (Draper et al., 1996;
Beeson et al., 2000), although this variable is not included in the ABCX
model. A pilot study by Wijeratne and Lovestone (1996) comparing the
difficulties faced by coresident relatives caring for elderly patients with
dementia and those with depression found that a poor premorbid rela¬
tionship with the patient, along with patient behavioral difficulties and
satisfaction with social contacts, were significant variables in the Gen¬
eral Health Questionnaire.
Similar findings were reported in Yates et al. (1999) in a study of the
relationship between the caregiver of disabled elders and the care
recipient: the caregiver-care receiver relationship mediated the linkage
between caregiving stressors/caregiver overload and depression.
Lawrence et al. (1998), too, found that the quality of the relationship
mediated the connection between overload and disability. In
Soerensen (1998), however, found that the quality of mother-daughter
relationships did not predict the mothers’ (care receiver) or the daugh¬
ters’ (caregivers) anticipation of care needs.
CONCLUSIONS
Literature in the field of coping with chronic illness reflects height¬

ened interest in caregiving in recent years. Considerable knowledge
has been amassed about the physiological and psychological mecha¬

nisms likely to mediate changes in the psychological well-being/dis-
tress of the caregiver. However, controversy still exists regarding the
variables (related to both care receiver and caregiver) that induce psy¬
chological distress or alteration in well-being. One possible reason for
these differences is methodological, namely, disparity in samples,
measures, time of interview, and so forth (Bedard et al., 2000).
Beyond this factor, however, an important, and still inconclusive
aspect of both recent and earlier studies is whether differences in care¬
giver distress stem from the impact of the type of care receiver illness—
namely, cognitive impairment, mental illness, or chronic illness—or
from care receiver distress. While the literature discusses various caus¬
es of caregiver distress, and different types of care receivers, it does not
provide an obvious answer to the question: Which type of caregiver
coping is best in the case of cancer? Neither Lazarus and Folkman’s
(1984) coping-with-stress model nor Biegel’s (1991) adjusted ABCX
model of caregiver distress include care-receiver distress as a main
cause for caregiver distress. Several studies, however, do discuss the
impact of these variables. Jenkins & Schumacher’s (1999) findings indi¬
cate that the misery of schizophrenic and depressive patients is the
most burdensome and distressing factor for the caregiver. Similar find¬
ings by Marsh et al. (1998) indicate that the severe emotional difficul¬
ties of patients with traumatic brain injury, particularly anger, apathy,
and dependency, cause the greatest distress for caregivers. In the same
vein, Miller et al. (1996) report that patient level of depression is the
best predictor of distress in caregivers of patients with Parkinson’s dis¬
ease. Similar findings for Alzheimer’s disease are indicated by Donald¬
son et al. (1998). A study on caregivers of multiple sclerosis patients
(Pakenham, 1998) finds positive correlations between spouse caregiver
distress and patient distress.
An explanation for the relatively limited attention devoted to the
impact of patients’ psychological distress on caregiver distress may lie
in the type of illnesses discussed in most caregiver research. The
chronicity of impairment of patients with dementia and patients with
Alzheimer’s, multiple sclerosis, mental health problems or brain injury
forces the caregiver to find a coping style that can help the caregiver
adjust to the continuity of stress. Cancer, by comparison, includes peri¬
ods of stress but also involves periods of remission. Moreover, except
in the terminal phase, patients are generally less dependent on their
caregivers. This may lead to a greater focus on patient distress as a pre¬

dictor of caregiver distress.
Curiously, little research has dealt with caregiving for cancer
patients generally, with the exception of studies of caregivers during
the last stages of the patient’s illness. While considerable research has
been devoted to the psychological adjustment of cancer patients in all
stages of the illness, the focus has been on the impact of social support
(by spouse, children, parent, or other relative) on the patient’s adjust¬
ment to the illness rather than on caregiver distress. This book attempts
to fill this lacuna by focusing on the cancer caregiver distress model
based on several original cancer caregiver studies.
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Chapter 2
THE CAREGIVER OF THE

CANCER PATIENT
INTRODUCTION
A lthough extensive research has been done on how cancer patients

cope with or adjust to the illness, far less has been published on
how each member of the patient’s family (spouse, adult child, young
child, parent) copes. Of this relatively small body of work, few studies
are devoted to the caregiving member of the family, who, as has been
discussed in Chapter 1, plays a unique and vital role. Exploring this
issue is important because the caregiver’s role is indisputably the cen¬
tral element in the patient’s ability to cope with cancer and in the
patient’s psychological and psychosocial adjustment to the disease
(Funch & Mettlin, 1982; Manne, 1994; Aymanns et al., 1995; Bolger et
al., 1996; Spencer et al., 1998; Miley, 1999; Soller et al., 1999). More¬
over, some research has indicated that social support, which constitutes
the main component of caregiving, is a psychosocial factor that impacts
on length of survival (Maunsell et al., 1995; Cwikel et al., 1997; Giral-
di et al., 1997; Walker et al., 1999).
Most of the extant studies in this area focus on the importance of
social support in terms of the patient’s adjustment to cancer (Worden &
Weisman, 1977; Jamison et al., 1978; Dunkel-Schetter, 1984; Mishel &
Braden, 1987; Northouse et al., 1995; Bloom, 1996). Findings by
Hoskins et al. (1996b), who followed a sample of 128 women with
breast cancer in the initial phase at one, two, three, and six months
after surgery and at a year after surgery, confirm that social support is
a key factor in the adjustment to breast cancer. Women who were able
31
to talk about feelings and concerns with a spouse, relative, or friend

tended to score higher on adjustment scales than patients who report¬
ed that they were unable to confide in others. Moreover, the women s
need for emotional support from their spouse did not diminish over
time. Similar findings are presented by Bloom (1996) in research on
661 women treated surgically for early breast cancer, and by Brady &
Helgeson (1999), who studied breast cancer patients with recurrence.
They found that emotional support from a partner, as well as support
through information from an oncologist, were related to decreased
physical problems over time as reported by thirty women with breast
cancer recurrence.
CANCER AS A CAUSE OF STRESS
Relying on the stress model developed by Lazarus & Folkman

(1984) and Lazarus (1999), cancer is generally defined as a stressful sit¬
uation for both the patient and the caregiver, in light of the widespread
perception of the illness as a death sentence (Garcia & Lee, 1989). This
perception affects the quality of life of the cancer patient a priori: often,
the illness has a less severe effect than anticipated, yet the patient still
describes the quality of life as poor (Wagner et al., 1995).
Recent research on differences between acute and chronic stress
has raised the question of which type of stress is engendered by cancer.
One way to distinguish between stress type is by the frequency or dura¬
tion of stressful events, circumstances, or conditions. However, accord¬
ing to Baum et al. (1993), this distinction is problematic, as individuals
may habituate or adapt to a persistent stressor with repeated exposure;
an acute stressor can lead to long-lasting appraisals of stress even after
the event itself has ended; and a distinction based on the duration of
acute and chronic stress is often arbitrary. Compas et al. (1997) posits
two processes, one exogenous and the other endogenous, by which
acute events can lead to chronic stress. Exogenous processes refer to
ongoing demands and threats emanating from the environment. For
example, the diagnosis of cancer itself represents an acute traumatic
event for patients and their families that is associated with significant
short-term psychological distress as reflected in disruptions in daily
routines and family roles and in threats to the goals and values of the
The Caregiver of the Cancer Patient 33
patients and their families. Endogenous processes refer to the persistent

cognitive and affective reexperiencing of the stressor by patients and
family members. Intrusive and uncontrollable thoughts and concerns
about the disease, and reminders of it, perpetuate the sense of threat
and a state of emotional arousal. Involuntary negative thoughts, which
are part of the response system, unwittingly prolong stress.
Clearly, cancer engenders both acute and chronic stress. The acute
stress is caused by an exogenous process involving a series of time-lim¬
ited major or minor events related to the specific phases of the illness
that are harmful or threatening for a relatively brief period: diagnosis,
surgery, and adjuvant treatment (Lazarus, 1999). An individual who is
aware of suspect symptoms is in a stressful situation caused by a threat
to the individual’s life. On diagnosis, this threat becomes integral in the
individual’s life, although it may decrease or increase in severity with
each phase of the illness (Watson, 1994). Chronic stress, conversely, is
caused by an endogenous process stemming from a threat to life from
the moment of diagnosis, as well as a threat to the individual’s role in
the workplace and in the family. Each phase instigates a new level of
threat (Taylor, 1991). During the diagnosis process, for example, the
patient’s stressful feelings stem from uncertainty: Is it cancer or is it
not? If the diagnosis is cancer, the uncertainty becomes: Am I going to
die or not? (David, 1999).
The surgical intervention phase, which is a central part of cancer
treatment, brings with it a threat to the sense of personal invulnerabil¬
ity: concern that one’s life is being entrusted largely to strangers; sepa¬
ration from the familiar environment of home and family; fears of loss
of control or death while under anesthesia; and fears of damage to
body parts such as in a mastectomy, colostomy or amputation (Man-
derson, 1999). Although these preoperative reactions occur in all sur¬
gical patients to some degree, significantly greater stress is involved
when cancer is the suspected or the a priori diagnosis (Gottesman &
Lewis, 1982;Jacobsen et al., 1998).
Similarly menacing threats are implicit in the medical treatment
phases, which consist of radiotherapy, chemotherapy, hormonal thera¬
py, and immunotherapy. These threats are present before, during, and
at the termination of treatment. Before treatment, patients continue to
deal with their emotional responses to the diagnosis while being further
challenged by the need to choose, or assent to, a systematic, often
painful and sometimes dangerous therapy, all within a relatively short

period of time (Knobf et al., 1998). This period is characterized by anx¬
iety related to the uncertainty and unpredictability endemic to the dis¬
ease and its treatment; the scheduling of treatments; complicated
decision making regarding the most beneficial therapy; and, often,
inadequate information. Even the issue of active participation in the
decision-making process is uncertain: some research shows greater
emotional distress for active participants in the process than for more
passive patients (Fallowfield et al., 1995; McHugh et al., 1995; Ong et
al., 1999). During the medical treatments, patients are threatened by
both the outcome and the side effects (Greenberg, 1998; Knobf et al.,
1998). Treatment may result in subjective symptom distress, or it may
produce toxicity that interferes with the patient’s functional abilities
and level of independence. Procedures such as intravenous access or
dependency on the health care provider for scheduling of treatment are
also a source of threat to patients.
The most common distressing physical symptoms are fatigue, nau¬
sea, vomiting, weight changes, and hair loss, while anxiety is the most
prevalent nonphysical symptom. Several studies suggest that the sever¬
ity of the symptoms may depend on the amount of information the
patient gets about the potential side effects: adequate information may
reduce the severity of side effects (Campora et al., 1992; Knobf et al.,
1998; Tierney et al., 1992). Often, the side effects of chemotherapy con¬
tinue even six months after the cessation of treatment (Beisecker et al.,
1997), impacting on daily functioning, body image, family relation¬
ships, and sexual relationships. Several drugs have a neurotoxic side
effect as well. Radiotherapy presents a threat to body image in terms of
burns, fear that the release of the radiation will not be accurate, or fear
that the toxicity of radiation burns will be too great. Many patients are
concerned about disrobing, type of machine, and being alone in the
room. Others worry about the duration of exposure and the danger of
coughing, breathing, or moving during an exposure. These threats
have an obvious impact on the psychological well-being of the patient
(Chandra et al., 1998).
Although on completing medical treatment patients feel less threat¬
ened, they also have a sense of loss of regular medical surveillance,
loss of the security of being under treatment, and loss of support relat¬
ed to ongoing communication with and availability of health care
providers. Moving into the follow-up phase, cancer patients are in a

stressful situation arising from the fear of the spread or recurrence of
the illness. The first year is the most stressful. Every symptom is inter¬
preted as a sign that the illness is progressing, and every laboratory test
evokes the fear of positive results (i.e., a high score in the marker test,
which is evidence of an active illness). Often in this phase patients have
less family and social support as coping resources than previously.
Family and friends are often criticized by patients for expecting the
patient to resume acting “normally” once the treatment stage is over,
while the patients continue to struggle with the reality of the risk of
recurrence and possible mortality. Information about other patients
they know who have had recurrences and have died exacerbates their
emotional distress (Knobf et al., 1998).
Patients with recurrence or metastasis, a particularly vulnerable
group, face new stressors (Breitbart et al., 1998). They are threatened
by the evidence that the cancer is not curable, that the length of their
survival time is limited, and that death is near and real. At the same
time they are threatened by the outcomes of ongoing aggressive med¬
ical treatment and, in most cases, pain, which causes a decrease in daily
functioning and increased dependency. The most common psycholog¬
ical responses are anxiety and depression. Patients with severe symp¬
toms of anxiety may display tension, restlessness, shortness of breath,
numbness, and worry. Patients with severe symptoms of depression
feel hopelessness and even a suicide tendency, sleep a lot, cry easily,
and perceive everything as meaningless.
In the terminal phase, when all the medical treatment for halting
the progress of the illness has failed, patients suffer from severe physi¬
cal symptoms such as pain, anorexia, weakness, and specific symptoms
related to each type of cancer-uncontrolled coughing from lung can¬
cer, head pain from brain and neck cancer, and so forth. They may
have difficulty eating, controlling elimination, focusing attention, and
escaping pain or discomfort. They are threatened by the loss of valued
activities and friendships and begin to anticipate the loss of further
activities and relationships. Patients must also deal with their deterio¬
rating appearance, which affects self-image. According to Kiibler-Ross
(1969), patients in this phase are terrified of near death. They may ask
family members not to leave them alone and are afraid to sleep.
PATIENT COPING WITH THE THREAT OF THE ILLNESS
The chronic stressful situation caused by the threat to life and the
acute stress in each phase of the illness engender a coping process that
is not stable. The primary and secondary appraisal by the patient of the
patient’s situation begins again with each phase or, according to some
stress theories, the process is actually one of reappraisal (Lazarus, 1999).
A primary threat is posed by having to make decisions about how
to treat the disease, especially in the event of conflicting opinions by
physicians over what course of action to take. The patient in this situa¬
tion assesses coping options, focusing on both problem-solving strate¬
gies (such as active coping, planning, suppression, or instrumental
support) and emotion-focused strategies (such as ventilation, denial, or
behavioral disengagement; Carver et al., 1989). In most cases the
patient uses both types, although in differing proportions in each reap¬
praisal. For example, seeking a second medical opinion may be viewed
as an active coping strategy yet may partially involve denial of the diag¬
nosis. Denial is common in the early stages of the disease. The patient
seeks another opinion because the patient hopes the physician has
erred in the diagnosis, and at the same time believes that this step is
necessary in making the best decision for a cure. Following successful
surgery, patients may adopt avoidance of the fact that the surgery was
an outcome of a cancer diagnosis. Some patients deny that the diagno¬
sis is life threatening. Denial may also mean denial of an emotional
reaction to the threat—avoiding thinking about the situation, or active
efforts at self-distraction from feelings of distress. However, when the
illness progresses, the patient’s ability to use denial or avoidance as a
strategy is more limited. Instead, the patient uses more problem-
focused strategies, such as instrumental support, or emotion-focused
strategies such as ventilation, and religion, which are helpful in coping
with threat in this phase of the illness.
Extant research assesses the association between appraisal, coping
process, and psychological distress of the cancer patient. Stanton &
Snider’s (1993) study of 117 women before a breast biopsy, after diag¬
nosis, and, for those who had cancer, after surgery, focuses on person¬
ality, cognitive appraisal, coping, and mood variables. The findings
indicate that, consistent with Lazarus and Folkman’s (1984) stress theo¬
ry, personal attributes, cognitive appraisals and coping processes are
all associated with prebiopsy mind set. Subjects who were younger, less
optimistic, felt more threatened, and used more cognitive avoidance to
cope were in greater distress before diagnosis. In the same vein,
Epping-Jordan et al. (1999), examining the psychological adjustment of
eighty breast cancer patients upon diagnosis and at three- and six-
month follow-ups, found that symptoms of depression at diagnosis were
predicted by low dispositional optimism. Their depression was partial¬
ly mediated by the use of emotion-focused disengagement coping. At
three months, changes in anxiety/depression symptoms were predicted
by intrusive thought only. At six months, low dispositional optimism
reemerged as a significant predictor of change in anxiety/depression
and was again partially mediated by the use of emotion-focused disen¬
gagement coping. Similar findings are reported by Osowiecki & Com-
pas (1998, 1999): problem-focused engagement coping was related to
fewer anxiety/depression symptoms at diagnosis and emotion-focused
disengagement coping was related to more anxiety/depression symp¬
toms at six months. Two studies by Nezu et al. (1999) on the association
between problem solving as a coping mechanism and psychological
distress revealed similar findings. In one, recently diagnosed cancer
patients who were less effective problem solvers reported a high level
of anxiety and depression as well as more cancer-related problems. In
the other, a weaker problem-solving ability on the part of breast cancer
patients was a significant predictor of psychological distress. This was
born out in research by Maguire (1997) showing that patients with a
greater number of severe concerns who felt unable to resolve them
were most likely to develop depression. In addition, the onset of depres¬
sion was linked to the perception by patients that the information they
had been given about their disease was inadequate for their needs,
whether in terms of too little or too much information.
CAREGIVER COPING WITH THE THREAT OF THE ILLNESS
The threat of cancer is palpable not only to the patient but to the
patient’s entire family. Each member of the family is in a state of chron¬
ic stress caused by the threat of separation and loss. Such threats can
divert the life course of the individual family member as well as the
family as a system (Weihs & Reiss, 1996).
The cancer-related situation falls into a multilevel hierarchical pat¬

tern consisting of the disease, the patient’s overall well-being, the person
with cancer, the patient’s family, and the community. Each level is a self-
contained entity not reducible to simpler components. The cancer-relat¬
ed system emerges when the patient, the family, and the community
coalesce in response to the effects of the malignancy in the patient’s
body. Influences from each level combine to produce the cancer-
induced threat. These range from medical treatment to loss of relation¬
ships or painful interchanges between the patient and the patient’s loved
ones. In each phase of the illness the family is in acute stress arising from
the threat of the reduced functioning of the patient, the alteration of the
patient’s roles as spouse, parent, and so forth, and reduced economic
capacity side by side with increased medical expenses (Watson, 1994).
With this, the family constitutes one of the primary external coping
resources in chronic or terminal illness generally and for cancer
patients specifically (Spencer et al., 1998). Close, loving relationships
are a vital factor in the patient’s well-being. In the case of cancer, more¬
over, the family plays a major role in decision-making demands at a
time when the patient is least able to deal with them. The main care¬
giving member of the family is expected by others (friends, relatives,
medical staff, and especially the caregiver personally) to be able to con¬
tain and control individual feelings arising from the threat of cancer.
From this point onward, that caregiver is forced to take responsibility
for the patient’s medical treatment and daily routine. This individual
becomes the primary (or secondary) caregiver. The caregiver, as
described in the extensive body of literature discussed in Chapter 1, is
perpetually involved in monitoring the patient’s medical condition,
often going to great lengths to self-educate and evaluate a mass of new
and complex information. Not only is the caregiver willing, but has a
deep need to receive information and share in the decision-making
process (Lederberg, 1998).
During the adjuvant treatment phase the caregiver must also pro¬
vide tangible assistance to the patient, including transportation for
treatment and emotional support before, during, and following the
treatment. A new threat that evolves is that of the caregiver’s loss of
employment (Knobf et al., 1998). This threat increases with the age of
the caregiver, is more frequent for women, and is most widespread in
families with lower incomes. It is heightened during recurrence and in
the terminal phase. As the illness progresses, the caregiver has more
daily tasks in light of the constriction of the patient’s roles as well as the
necessity to provide the patient with direct care in almost every per¬
sonal function—dressing, bathing, feeding, and so forth.
The coping process of the cancer caregiver is characterized in each
phase by the need to resolve problems arising from the new situation
engendered by each phase. In contrast to the patient, who uses a more
emotional strategy, the caregiver tends to resort to problem-solving
methods, focusing on coping as a main strategy. This very choice of
coping strategy has a major, and beneficial, effect on the patient’s psy¬
chological adjustment to the illness as well as on the patient’s psycho¬
logical state (Spencer et al., 1998).
CANCER CAREGIVER COPING MODELS
An early study by Lewis (1986) identified eleven central themes

found in fifteen extant studies of caregiver spouses coping with cancer.
The themes appear to cluster around three realms: 1) Affective and
emotional reactions—fear of the patient dying; emotional strain such as
anxiety, fear, and helplessness; existential concerns regarding the
meaning of life; and continued uncertainty regarding the patient’s
health status; 2) Behavioral concerns-alterations in household roles
and lifestyle, changes in sexual needs and behavior, the need to com¬
fort and support the patient, increasing demands for direct patient care
in the later stages of the illness, and, to a lesser degree, financial pres¬
sure; and 3) Need for systematic support-the needs of the spouse may
not converge with those of patient, with the spouse’s needs often being
neglected, while outside services are often viewed as inadequate, leav¬
ing families to cope on their own. These themes, which recur in
research on other caregiving members of families of cancer patients
besides spouses, also appear in most of the models of the distress of
caregivers of chronic and terminal patients described in the past
decade (see Chapter 1).
A model of strain of caregivers to patients with stroke, developed
by Schulz et al. (1988) and adjusted to cancer patients by Sales et al.
(1992), suggests that the greater the demands of the patient’s illness
(objective stressors), the more negative the psychosocial consequences
for the family caregiver. Additional variables that affect family caregiv-
er strain relate to the caregiver’s demographic, psychological, and kin¬

ship status. These caregiver variables provide the situational context, or
the conditioning, that may buffer against the adjustment problems of
caregiver family members (Sales et al., 1992).
Another model for caregiving during fatal illnesses such as AIDS
and for advanced cancer patients (Brown & Stetz, 1999) traces the care¬
giving process through four phases: 1) Becoming a caregiver—facing
the present, choosing to care, looking to the future, and developing
competency; 2) Taking charge—managing the medical care demanded
by the illness, gaining an awareness of one’s own capabilities and
resilience, and enduring personal suffering; 3) Midwifing the patient’s
death-waiting calmly, and hoping for a “good” death; and 4) Taking
the next step after the death-experiencing relief, tying up loose ends,
dealing with regrets, and moving ahead.
The literature on the psychological state of members of the family of
cancer patients points to differences in findings as to which variables
predict caregiver distress. Figure 2.1 presents a model highlighting the
direct association between caregiver distress and patient distress and
the indirect association between patient coping strategy and caregiver
distress. The stressors consist of variables related to the caregiver-
health and role strain, and variables related to the patient’s illness-
phase and stage of the illness, type of diagnosis, and type of medical
treatment. Caregiver appraisal and coping process are also important
variables predicting the amount of distress the caregiver will feel. In
additional, personal resources such as gender, age, education, and
socioeconomic status, as well as social support resources such as family
support, quality of marital relationship, and social resources, make an
important contribution in predicting caregiver psychological distress.
CANCER CAREGIVERS COPING WITH THE ILLNESS:

WHICH CAREGIVERS DO BEST?
Stressors: Caregiver Variables
Role Strain
A review of research on family caregiver distress in the case of can¬

cer, a field that has proliferated in the last decade, indicates that for
Figure 2.1. Cancer Caregiver Distress Model
Note: The model is based on empirical cancer caregiver studies reported in the literature.
married patients the primary caregiver is most often the spouse (Allen
et al., 1999). Spouse caregivers typically provide the most extensive
and comprehensive care, maintain the caregiver role longer, tolerate
greater levels of disability than other caregivers, and endure greater
lifestyle adjustment (Siegel et al., 1991). Findings by Wilson & Morse
(1991), Zahlis & Shands (1991), and Hoskins et al. (1996a) indicate that
husbands of breast cancer patients tend to restructure their roles and
accommodate their lifestyle to their wives’ treatment regimen. Indis¬
putably, the cancer diagnosis, surgery, and medical treatment regimes
cause tremendous alteration in the spouse’s life, with the amount of

caregiver distress dependent on the point in the life cycle in which the
spouse is at that time (Veach, 1999).
Caregivers who are young, or newly married spouses, may also be
dealing with role definition in their new family unit and with separation
from family of origin, which may affect the amount of distress they feel.
Spouse caregivers who are parents of young children are burdened
with child-rearing duties and employment responsibilities that must be
juggled with the need to provide emotional support. Spouse caregivers
with adolescent children may find themselves in stressful situations
caused mainly by their difficulty in accepting their children’s changed
behavior, their move toward intimacy with peers, and their effort to
define and consolidate their own identity and goals. Because cancer is
a disease of the older population (Kristjanson et al., 1998), caregiver
spouses, too, are generally elderly and have health problems of their
own. The physical care demands of the patient may be too much for an
elderly spouse to manage.
In cases when the elderly patient is widowed, the role of primary
caregiver tends to be taken on by a daughter (Hull, 1990). Adult chil¬
dren of such patients, and especially daughters who are involved in the
home care and support of their elderly parents, have been variously
referred to as the “sandwich generation,” or “women in the middle”
(Shanas, 1979; Brody, 1981), because of the pressures and strains they
experience in trying to balance the needs of their marital, parental,
home, and work roles with the demands of the caregiving situation.
In summary, family caregivers must deal with a variety of stressors
in line with their point in the life cycle situation. As a result, they feel
role strain and often role conflict, especially in the recurrence and the
terminal stages.
Caregiver Health and Burden
While health and burden may be viewed as opposite sides of the

same coin (George & Gwyther, 1986), current research illuminates the
importance of distinguishing between the two in the context of the
impact of caregiving (Stull et al., 1994; Stuckey et al., 1996). Burden
appears to represent a unique domain of the caregiving situation and is
considered as being created by specific caregiving demands, whereas
health is considered to be an overall outcome that can be viewed as the

end result of the caregiving process. Evidently, burden and health are
factors that are interrelated, although whether the impact of caregiving
burden leads to an effect on health or whether health leads to an effect
on burden is unclear (Nijboer et al., 1998).
Little research has been carried out comparing aspects of extant
studies of other illnesses—such as dementia, Parkinson’s, Alzheimer’s,
or mental illness—to cancer. An explanation for this paucity may rely
on the nature of cancer. With the exception of the recurrence stage and
the final phase of the illness, the period of time in which the patient
requires caregiving is relatively brief. The caregiver, therefore, does
not feel prolonged burden.
Caregiver burden and role strain are generally responses to the
physical, psychological, social, financial demands, or all involved in
giving care (Zarit et al., 1980; Given et al., 1993; Raveis et al., 1999).
Most frequent, types of care tasks consist of emotional support, assis¬
tance with self-care and mobility, symptom management, conducting
medical care tasks, and financial management. Raveis et al. (1999)
reported high scores for caregiving daughters having a health-limiting
condition, a greater sense of filial obligation, and greater caregiver bur¬
den. Moreover, a correlation was found between anxiety scores in
daughter caregivers to a cancer patient. Vachon et al. (1982) found that
wives whose own health was poor reported greater physical needs dur¬
ing their husband’s final illness and exhibited greater distress. In con¬
trast, McCorkle et al. (1993) found that caregivers of patients with a
higher level of symptom distress reported a higher level of physical
caregiving, greater impact on their health, and more burden. This
study of 103 caregivers of patients with multiple solid tumors, inter¬
viewed on the discharge of the patient from the hospital and again at
three months and six months postdischarge, indicated that although
the patients’ condition stabilized or improved at three and six months
postdischarge, the caregivers continued to report similar levels of bur-
den-in financial impact, physical caregiving, and schedule. A correla¬
tion between psychological morbidity and burden was also found in a
study of thirty-nine caregivers of patients receiving palliative care
(Payne et al., 1999).
Stressors: Patient Variables
Phase of the Illness and Patients9 Physical Functioning
In any discussion of the psychosocial impact of cancer, the central¬

ity of the phase of the patient’s illness and physical functioning relates
to family-member distress as well (Sales et al., 1992; Given et al., 1993;
Kurtz et al., 1995; Schwartz et al., 2000). A study of caregiver depres¬
sion (Given et al., 1993) in a cross-sectional sample of 196 spouses and
other familial caregivers (mean age 55.5; 80% spouses) of patients
receiving outpatient chemotherapy indicated a direct relation between
patients’ dependencies with regard to activities of daily living and lev¬
els of caregiver depression, and an inverse relation to level of caregiv¬
er optimism. Patient functional impairment, however, was not found to
predict caregiver preference for greater instrumental support (Manne
et al., 1999a). Significantly greater psychosocial problems were found
in families of patients with metastasized cancer than was the case for
nonmetastatic patients (Wellisch et al., 1983). Similarly, mood distur¬
bance, anxiety, and mental health problems were found to be signifi¬
cantly greater during the period of palliative care preceding death
(Cassileth et al., 1985).
During the last decade, an increased number of prospective stud¬
ies based on interview series conducted at various intervals have illu¬
minated the caregiver distress process with even greater clarity. Jansen
et al. (1993), in a study of 100 cancer patients and their family mem¬
bers—spouse, child, sibling, parent, and so forth (^=126)—requested the
families to score the patient’s health, identifying major problems, in a
series of three interviews one and one-half weeks, seven and one-half
weeks, and six months following chemotherapy. No significant differ¬
ences were found between families with a patient receiving initial
chemotherapy in comparison with those receiving chemotherapy for
recurrent disease. In the same vein, no change in level of psychologi¬
cal distress was found in husbands of breast cancer patients during the
course of a year following diagnosis, interviewed seven to ten days
and one, three, six, and twelve months following diagnosis (Kurtz et
al, 1995).
Type of Cancer and Medical Treatment
Only a few studies have discussed the association between type of

cancer, medical treatment and caregiver distress. Early research by
Wellisch et al. (1983) found that families of patients with lung cancer
exhibited greater mood disturbances and felt more overwhelmed than
families of patients with breast or cervical cancer. Cassileth et al. (1985)
found that of the psychosocial effects on relatives of patients with vari¬
ous types of cancer, brain cancer evoked the most severe family reac¬
tion. No differences, however, were found to be associated with type of
cancer or type of medical treatment among family caregivers of cancer
patients in the terminal phase (Kristjanson et al., 1998), although the
cancer patient’s pain was found to have a significant impact on care¬
giver distress (Miaskowski et al., 1997).
Type of surgery and stage of disease were found to have an effect on
certain aspects of physical and emotional adjustment by husbands of
breast cancer patients (Hoskins et al., 1996a). Levels of negative emo¬
tions were higher among the husbands of patients who had non-breast-
conserving surgery as compared to husbands of patients who
underwent breast-conserving surgery at seven to ten days and at one
month after surgery, while husbands of patients with positive node sta¬
tus had significantly higher levels of psychological distress at all inter¬
view intervals (seven to ten days and one, three, six, and twelve months
after surgery). These findings support previous research by Ell et al.
(1988) examining the psychological distress of 143 cancer patients aged
thirty-five or older and their significant other (70% of whom were
spouses), indicating that the patient’s physical symptomatology, as well
as stage of illness, correlate with the spouse’s psychological adaptation.
The findings also support another study (Ey et al., 1998) indicating that
stage of cancer and survival rate were related to the husband’s avoid¬
ance and intrusive thoughts, in contrast to wives of cancer patients, for
whom the husband’s stage of cancer and projected survival rate were
not related to distress. Only one study indicated that the diagnosis, the
treatment regimen (chemotherapy, radiotherapy, and follow-up) and
the stage of the disease did not predict level of spousal distress (Glas-
dam et al., 1996). Similarly, one study reported that only the duration
of the patient’s illness did not affect spousal distress (Rodriguez & Hoff¬
man, 1994).
Caregiver Appraisals and Coping Process
Indisputably, the threat posed during the caregiver’s appraisal (pri¬

mary and secondary) in each phase of the illness has a main impact on
the caregiver’s psychological distress. Nevertheless, only two extant
studies address the association between appraisal and caregiver emo¬
tional distress. Northouse et al. (1998) measured two aspects of apprais¬
al-uncertainty and hopelessness—in facing the diagnosis of breast
cancer/benign breast disease. Couples in the malignant-diagnosis
group reported more uncertainty than couples in the benign group.
The husbands in the benign group, however, consistently reported
more uncertainty than their wives. Similarly, findings reported by
Andersson and Albertsson (2000) indicate that spouses of cancer
patients reflected greater uncertainty in their appraisal of a concrete
stress situation than the patients.
Somewhat more research has been devoted to the caregiver coping
process generally. An exploratory study (Kalayjian, 1989) of spouses of
cancer patients, using qualitative analysis, found that wives who
encountered the unexpected and uncontrollable situation of having a
husband diagnosed with cancer experienced multiple coping difficul-
ties-psychological disorganization, disequilibrium, and emotional
imbalance. They attempted to cope with this imbalance by resorting to
their habitual problem-solving behavior patterns and experienced dif¬
ficulty when seeking situational support. This, in turn, added to their
stress. A later study (Rodriguez & Hoffmann, 1994) indicates that pri¬
mary caregiver spouses of seventy-seven cancer patients in high dis¬
tress reported significantly greater use of coping strategies
characterized by avoidance and passive resignation. Research (Carter
& Carter, 1993) on the association between pessimism-optimism and
the distress of twenty husbands of breast cancer patients shows modest
but significant correlations between husbands’ ratings of present and
future (five years hence) psychological conditions. Similarly, another
study (Kurtz et al., 1995) found that caregivers who were optimistic
reported lower levels of depression.
Patient Coping
An important aspect of the study of caregiver coping with cancer is

the association between caregiver and patient coping (Dunkel-Schetter
et al., 1992). Findings reported by Andersson and Albertsson (2000), as

noted earlier, indicate that spouses of cancer patients reflected greater
uncertainty in their appraisal of a concrete stress situation than the
patients. Hannum et al. (1991), examining coping as an interpersonal
process in a sample of twenty-two breast cancer patients and their hus¬
bands, found that the extent of the husband’s distress depended on a
combination of his and his wife’s coping behaviors. Partially similar
findings were noted by Ptacek et al. (1994), namely, in significant
crossover associations between the coping reports of one spouse and
the outcomes of the other spouse. The husbands’ outcomes were some¬
what more strongly correlated with their wives’ reports of their own
coping than vice versa. A similar pattern of findings emerged for the
coping data provided by each spouse about the other (Manne & Glass-
man, 2000). In contrast, however, Ey et al. (1998) found no relationship
between individual stress responses in a study of cancer patients and
their spouses: patient scores on avoidance and intrusion were unrelat¬
ed to spouse scores in the case of both female and of male patients.
Clearly, larger samples need to be examined in studying the asso¬
ciation between the spouse’s distress or coping and that of the cancer
patient. While from the clinician’s point of view the mutual impact is
obvious, the question of whether the caregiver’s psychological distress
and coping strategy mainly affects that of the patient or vice versa
remains undetermined.
Patient Distress
Research suggests that the patient’s reaction to the illness appears to

have an important impact on caregiver distress (Baider & Kaplan De-
Nour, 1993; Ptacek et al., 1994; Kurtz et al., 1995; Baider et al., 1998;
Baider & De-Nour, 1999). When patient adjustment is good, spouses
and other family members exhibit less psychosocial disturbance,
whereas families of patients who exhibit greater distress show poorer
adjustment. Which side motivates the other, however, requires further
exploration.
Early studies indicating a positive association between cancer
patient distress and distress of spouse or next of kin include those by
Christensen (1983); Cassileth et al. (1985); Houts et al. (1986); Ell et al.
(1988); and Oberst and Scott (1988). Similar findings are indicated in
later research. A study of melanoma patients by Baider et al. (1995)
shows a significant association in psychological distress between part¬

ners as measured by the BSI and the Profile of Mood States. These
findings bear out previous research (Baider & Kaplan De-Nour, 1984;
Baider et al., 1986; Baider & Kaplan De-Nour, 1988b) on the associa¬
tion between breast cancer patients and their spouses, as well as
research (Northouse et al., 1998) comparing couples’ adjustment to
breast cancer and to benign breast disease. A high degree of corre¬
spondence was reported between the level of adjustment by women
with breast cancer and their husbands over time. Findings by Kristjan-
son et al. (1998) focusing on the terminal phase also indicate a signifi¬
cant relationship between patients’ and family caregivers’ distress
scores.
Northouse (1984), however, suggests that the relationship between
the patient’s and the family’s adjustment may not be a direct one but
rather is mediated by other factors in their relationship, such as per¬
sonality or nature of the illness. Several studies found no association
between caregiver and cancer distress. Research by Rodriguez & Hoff¬
mann (1994) of seventy-seven spouses of cancer patients who were
receiving cancer treatment indicated no significant caregiver distress
associated with patient distress. An explanation suggested by the
authors for their finding is the presence of an indirect relationship
between spouse and patient distress that is mediated by illness vari¬
ables and psychosocial variables not assessed in the study. Partially sim¬
ilar findings were reported by Baider et al. (1998): the reaction of
spouses of cancer patients who were interviewed one month after diag¬
nosis accounted for patient distress only to some extent.
PERSONAL RESOURCES: CAREGIVERS AND PATIENTS
Extant research on the relationship between patient and caregiver

distress generally focuses on the impact of the caregiver’s personal
resources on the caregiver’s distress, coping process, and the severity of
burden assessment. Little attention is given to assessing the impact of
the patient’s personal resources on caregiver coping with the illness
even though this factor plays an important role in caregiver distress. A
review of the research on the impact of both caregiver and patient per¬
sonal resources follows.
Gender
Caregiver gender has been found by most of the research to affect

the caregiver s distress. Some studies document the greater distress of
females as caregivers, others report that male caregivers are in greater
distress, and a few find no gender differences (Jansen et al., 1993; Glas-
dam et al., 1996; Hagedoorn et al., 2000). A study by Wellisch et al.
(1983) of homebound cancer patients and their spouses, which exam¬
ined the correlates of depressive mood among spousal caregivers,
found that families of male patients were more overwhelmed by the
burden of home care than were families of female patients. Muurinen
(1986) found that female family members of male patients were likely
to give up their job in order to care for the homebound patient. Mor et
al. (1987) reports that patients with female caregivers had more of their
needs met than those with male caregivers, while the concerns of meet¬
ing patient needs may have increased the female caregiver’s emotion¬
al burden. Several studies, however, found husbands of ill wives to be
more distressed. Research by Baider et al. (1989) on thirty-nine married
couples in which one spouse had colon cancer, and fifty couples deal¬
ing with malignant melanoma (Baider et al., 1995) indicates that the
psychosocial and psychological adjustment to the illness by the hus¬
band caregivers was worse than that of the wife caregivers.
The role of gender varies in other ways, too. Ey et al. (1998) reports
that female spouses were more distressed by their husband’s unwill¬
ingness to cope direcdy with his diagnosis. Conceivably, this relates to
the greater sensitivity of women to interpersonal behavior, such as a
husband’s avoidance. While Payne et al. (1999) found that females car¬
ing for patients receiving palliative care in the community were found
to have higher levels of psychological distress and burden than males
in the same role, Kristjanson et al. (1998) reports that male caregivers
of patients in home care were more distressed than female caregivers.
Several investigators assess the impact of patient gender on care¬
giver distress. Schumacher et al. (1993) studied seventy-five family
caregivers (65% of whom were spouses or significant others) of cancer
patients aged twenty-five to seventy-eight years who were receiving
chemotherapy. They found that patients’ gender (male), perceived cop¬
ing efficacy, and perceived adequacy of social support were the only
significant correlates of caregiver depression. However, research by
Northouse et al. (2000) found that women, regardless of whether they
were patients or spouses, reported more distress, more role problems,

and less marital satisfaction than men.
Age
Research assessing the association between age and family caregiv¬

er distress has indicated conflicting findings regarding the effects ol age.
While, broadly, younger family members tend to exhibit greater emo¬
tional distress than older ones (Carey et al., 1991; Kristjanson et al.,
1998; Payne et al., 1999), older couples may experience other forms of
difficulty. Wellisch et al. (1983) found that spouses who were older than
seventy had a more difficult time dealing with home care tasks than did
younger spouses. Glasdam et al. (1996) reported no significant effect of
age on spousal distress. Similarly, the age of the caregiver was unrelat¬
ed to the caregiver’s stress responses or level of distress as reported by
Ey et al. (1998) and by Rodriguez & Hoffmann (1994), who found no
significance between groups (low distress/high distress). Effects were
observed for spouse age. Ell et al. (1988), however, found that age was
a more important predictor of mental health among patients than
among significant others. Contrary to this finding, patients’ age did not
affect burden on relatives of Nigerian women with cervical and breast
cancer (Ohaeri et al., 1999).
Education
The impact of education as a personal resource than can affect care¬

giver distress is hardly assessed in the literature, although the few
extant studies in this area show that the educational level of the family
caregiver has a positive association with the caregiver’s psychological
distress. Oberst et al. (1989) found that caregivers with less education
felt threatened by the patient’s illness. Findings by Ey et al. (1998) show
that caregivers with a high level of education reported using less
avoidant coping. By contrast, Kristjanson et al. (1998) show that the
educational level of patients or of family caregivers of patients in the
terminal phase was not significant. Patients’ education was also found
not to affect relative caregivers in a study by Ohaeri et al. (1999) on
women with cervical and breast cancer.
Socioeconomic Status
Not surprisingly, most research on the association between socioe¬

conomic status and caregiver emotional state indicates a positive cor¬
relation: the caregiver with a higher income may utilize paid assistance
in household tasks or the patient’s personal care. A study by Mor et al.
(1987) found that unemployed wives displayed more problems during
their husbands’ final stage of illness than did wives who worked outside
the home. Oberst et al. (1989) found that caregivers of a low socioeco¬
nomic status felt more threatened by the patient’s illness. Similarly,
financial problems were consistently cited as one of the five issues of
greatest concern (along with general health, self-appraisal, work, and
condition of family) by caregivers of patients in chemotherapy treat¬
ment (Jansen et al., 1993). Kristjanson et al. (1998) found that caregiv¬
er concern over family income was associated with symptoms of
distress in the terminal phase. In additional, this study found, family
caregivers of patients who reported an adequate family income were
more accurate in their overall reports of the patient’s symptoms of dis¬
tress, breathing, and appearance than family members of patients with
inadequate family incomes.
SOCIAL AND FAMILY SUPPORT
The terms family support and social support that appear in the litera¬
ture as a main factor predicting caregiver distress are often used inter¬
changeably and may cause confusion to the reader. One way to
distinguish between them is to examine the measurements used in
identifying them: the Family Environment Scale (FES; Moos & Moos,
1981), which assesses cohesion; the Multidimensional Scale of Per¬
ceived Social Support (MSPSS; Zimet et al., 1988)-from family,
friends and significant other; and the Interview Schedule for Social
Interaction (ISSI; Henderson et al., 1981). The aspect that unifies them
is the caregiver’s need for support-mainly emotional-from immediate
family, friends, and other relatives, as well as an acknowledgment of
the caregiver’s role as the primary support for the patient and the rest
of the family. Put another way, the caregiver needs to know that the
patient and the other adult family members are aware that the caregiv¬
er suffers, too (Manne, 1994; Manne, 1999b; Monahan, 1997).
The caregiver’s main fear is that of losing the patient. The caregiv¬
er suffers from a sense of helplessness at being unable to bring about
the recovery of the loved one or to alleviate the loved one’s physical
symptoms. Several studies show that the family’s—and especially the
caregiver’s-need for support is often neglected by medical personnel,
friends, and others whose focus is on meeting the patient’s needs for
support. Ell et al. (1988) reports significantly less perceived adequate
support on the part of spouses than on the part of patients. Northouse
(1988) found that although mastectomy patients and their caregiver
husbands perceived similar levels of support from each other and from
other family members, husbands perceived significantly less support
from friends, nurses, and physicians than did their wives. Northouse
(1988, 1996) and Davis-Ali et al. (1993) found that degree of perceived
support was the only significant correlate of the husbands’ adjustment
to the illness with that of the patient. Surprising findings by Keller et al.
(1996) reveal that most spouses of cancer patients rated the patient as
their predominant source of emotional support, with only one-third
(32%) of the spouses reporting that their predominant emotional sup¬
port came from friends. A study of caregivers of hospice patients (Wil¬
son et al., 1990) indicated that high levels of caregiver worry were
positively related to satisfaction with outside activities and satisfaction
with friends. Another finding, by Schumacher et al. (1993), was that
higher levels of support were related to lower levels of depression on
the part of family caregivers. More significant, limited social support
for the caregiver increases the risk of problematic hospital discharge of
patients in the advanced phase (Powazki & Walsh, 1999).
QUALITY OF MARITAL RELATIONSHIP
Research about caregivers generally, and about caregivers of cancer

patients specifically, indicates that when the patient is married, the
spouse is the primary caregiver (Allen et al., 1999). The marital rela¬
tionship between patient and spouse, therefore, appears to be a major
determinant of the caregiver’s adjustment to the illness, often more
important than the impact of personal resources (Hannum et al., 1991).
Early studies by Grandstaff (1976) and Wellisch et al. (1978) found that
couples with a strong marriage were able to weather the stresses of
mastectomy more easily than did other couples. Moreover, as indicat¬
ed in the research by Wellisch et al. (1978), husbands in good marriages
perceived themselves as having fewer psychological difficulties after
surgery than did husbands in less satisfactory marriages. Spouses with
a close relationship with the patient, however, may suffer more in the
terminal period (Vachon et al., 1982; Muurinen, 1986). More similar,
the quality of life of the spouse of a patient with advancing cancer is
best predicted by the spouse’s coping with the marital situation (Fuller
& Swensen, 1992). A spouse in great distress often has greater difficul¬
ty in family functioning and extended family relationships, as well as
less marital satisfaction (Rodriguez & Hoffmann, 1994). A positive asso¬
ciation was also found between satisfaction with the marital relation¬
ship and mental health in husbands of breast cancer patients (Ptacek et
al., 1994).
Findings reported by Hoskins et al. (1996a,b) in a study of 121 hus¬
bands of breast cancer patients show that support within the marital
relationship is a significant predictor of both emotional and physical
adjustment—activities of daily living, cognition, time use, social inter¬
action, and so forth. Dissatisfaction with emotional support in the mar¬
ital relationship was direcdy and significandy related to worry, tension,
and uneasiness, a consistent finding throughout the studies. Research
on caregivers of patients in the terminal phase (Kristjanson et al., 1998)
shows the likelihood that the long-term caring relationship between the
patient and the family caregiver affects caregiver distress.
In contrast to these findings, one study (Manne et al., 1999b) shows
that among spouses who felt that they had a satisfactory marital rela¬
tionship, restrictions in personal time resulting from the caring were
not significandy associated with their emotional distress, and their emo¬
tional distress was not significandy associated either with spousal emo¬
tional distress or with critical responses. However, interference in
spousal activity was significandy associated with spousal distress, and
spousal distress was significantly associated with critical responses
among spouses who had a less satisfying relationship with the patient.
Several studies show that quality of marital communication, an
important aspect of a good marriage, facilitated or hampered adjust¬
ment. In the area of communication regarding the breast cancer diag¬
nosis, the capacity for sensitivity and selectivity in terms of what to
communicate, and when, was perceived by couples as more important

than being able to “tell all” and appeared to be a foundation of their
coping and adaptation (Lichtman et al., 1987; Skerrett, 1998). Most
research deals with the association between communication and dis¬
tress in the terminal stage of the illness or during bereavement (e.g.,
Cohen et al., 1977; Vess et al., 1985a,b; Manne, 1994). Communication
with the ill patient is important not only in the marital context, but also
between each member of the family generally and between the pri¬
mary and secondary caregiver specifically.
CONCLUSIONS
Even though there is wide agreement that cancer causes stress to

each member of the family, relatively little research has been devoted
to the variables that affect caregiver distress. The literature that does
focus on caregiver coping and adjustment (both psychological and psy¬
chosocial) to the illness is based on the various coping models (Lewis,
1986; Schulz et al., 1988; Sales et al., 1992). Only recently have these
studies addressed the issue of which variables predict caregiver psy¬
chological distress. One group of variables relates to the impact of the
illness and are referred to as stressors: phase of the illness, type of diag¬
nosis, stage of the illness, and medical treatment. The other group of
variables comprises personal resources: gender, age, education, and
socioeconomic status. Certain aspects have evoked divergent findings,
with those on the effect of gender on caregiver distress the most con¬
flicting. Notably, the effects of certain variables, such as caregiver age
and socioeconomic status, are rarely assessed.
A relatively new aspect of the effect of caregiver distress has elicit¬
ed research recently, namely, the patient’s coping strategy. Some of
these studies assess direct impact (caregiver distress on patient coping
strategy) and others indirect association (the link between patient cop¬
ing, patient distress, and caregiver distress).
Part Two of the book explores the association between illness vari¬
ables as stressors, personal stressors, patient coping, and caregiver dis¬
tress based on the authors’ empirical data. The following chapter
focuses on assessment of caregiver distress variables.
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Part Two
EMPIRICAL RESEARCH:
CAREGIVERS AND CANCER
Chapter 3
MEASUREMENT ISSUES
STRESS MEASUREMENT
B ecause stress theories are complex and sometimes contradictorily

arrayed (see discussion in Chapter 1), stress measurement has devel¬
oped in a variety of operational formats. Stress theories may emphasize
either environmental demands, intrapsychic cognitive processes (e.g.,
appraisal, coping), emotional states (anxiety, depression), or psycholog¬
ical responses as central to the definition of stress, leading to an overall
classification of stress measurement according to three categories of
stress theories (Derogatis & Coons, 1993): 1) Stimulus-oriented theories,
which view stress as residing in the stimulus provided by the individual’s
environment; 2) Response-oriented theories, which define stress as the
response by the individual to environmental events; and 3) Interaction¬
al theories, which emphasize the mediating mechanisms between envi¬
ronmental stimuli and the responses they invoke.
With cancer defined as a stressful situation not only for the patient
but for the caregiver family member, the authors have found that meas¬
urement based on both response-oriented theories and interactional
theories are the appropriate instruments for the assessment of mal¬
adaptive or dysfunctional symptoms in cancer caregivers-in the areas
of psychological distress, psychological adjustment, coping strategies,
social support, and degree of burden. This chapter focuses on response-
oriented and interactional measurements, with emphasis on the Brief
Symptom Inventory (BSI) measurement, which is used as a highly
effective measure in each data analysis in Part Two of the book. The
first part of the chapter focuses on general stress measures, while the
65
second part describes measures developed specifically in the context of

physical illness.
RESPONSE-ORIENTED MEASUREMENTS
Response-oriented theories of stress, pioneered by Cannon (1929);

studied later by Selye (1950, 1970), who formulated the General Adap¬
tation Syndrome (GAS) theory; and further developed by Henevy and
Stephens (1977), define stress as a series of response variables. This
response is viewed as a precursor to, or as instrumental in, the devel¬
opment of functional derangement and mental illness. Assessment is
focused, therefore, on measuring disorganized or maladaptive func¬
tioning. Psychological symptom inventories, affect and mood scales,
and instruments reflecting general psychological state have been uti¬
lized explicitly or implicitly to define stress according to these theories
(Derogatis & Savitz, 1999).
Brief Symptom Inventory
Most response-oriented measurements arise from clinical research in

psychopathology, cognitive dysfunction, disorganized interpersonal
social relationships, and symptomatic distress. The study of long-stand¬
ing psychiatric disorders has been adapted by investigators to assess the
presence of stress. Of all such measurements, the BSI (Derogatis, 1975a;
Derogatis & Spencer, 1982) has been found by the authors to be most
effective in assessing the presence of stress among both cancer patients
and caregivers because it measures multidimensional psychological
symptoms and myriad dysphoric emotions typical of the stress of cancer,
as opposed to testing a specific syndrome. In addition, it has the advan¬
tage of a time limitation (fifteen minutes) for the entire testing procedure.
The BSI is a self-report symptom scale designed to measure levels
of psychopathology (Derogatis & Melisaratos, 1983). A shortened form
of the basic version of the Sympton Checklist-90-Revised (SCL-90-R),
it has undergone extensive development (Derogatis et al., 1973; Dero¬
gatis et al., 1974; Derogatis, 1977; Derogatis & Cleary, 1977). It consists
of fifty-three items describing a variety of problems and complaints,
ranging from trouble remembering things to feeling lonely, feeling
Measurement Issues 67
strain, nausea, and so forth. The items are rated on a 5-point distress
scale ranging from 0 (not at alt) to 4 (extremely). The inventory is com¬
posed of nine symptom areas: somatization, obsessive-compulsive,
interpersonal sensitivity, depression, anxiety, hostility, phobic anxiety,
paranoid ideation, and psychoticism.
Three global indexes may be calculated from raw BSI scores (Dero-
gatis & Melisavatos, 1983): 1) The General Severity Index (GSI), based
on the mean of the ratings the subject has designated for each symp¬
tom; 2) The Positive Symptom Total (PST), a frequency count of the
number of nonzero symptoms the subject has reported; and 3) The
Positive Symptom Distress Index (PSDI), a score reflecting the intensi¬
ty of distress, corrected to the number of symptoms cited. SCL-90-R
and BSI scores are highly correlated. Four formal norms for the BSI
have been established as a result of testing 1,002 heterogeneous psy¬
chiatric outpatients, 974 community nonpatient adult subjects, 423 psy¬
chiatric inpatients, and 2,408 community adolescents (Derogatis, 1994).
Additional published norms for the BSI are for the elderly (Hale et al.,
1984), for U.S. college students (Cochran & Hale, 1985), and for Israeli
adolescents (Canetti et al., 1994).
Internal reliability coefficients were established based on a sample
of 719 psychiatric outpatients, using Cronbach’s coefficient alpha (a).
The coefficients for all nine dimensions of the BSI ranged from a low
of .71 on the psychoticism dimension to a high of .85 on depression.
Coefficients of test-retest reliability in a sample of sixty nonpatient indi¬
viduals over a two-week span ranged from a low of .68 for somatization
to a high of .91 for phobic anxiety. The General Severity Index also
revealed a good stability coefficient-.90, providing assurance that the
BSI represents consistent measurement across time (Derogatis &
Savitz, 1999).
The BSI has been used as a sensitive screening scale for psycho¬
logical distress in cancer patients and family members in samples such
as mixed cancer patients and their spouses (Ey et al., 1998), breast can¬
cer patients and their partners (Northouse, 1998), colon cancer patients
and their spouses (Baider et al., 1989), melanoma patients and their
spouses (Baider et al., 1995), and married couples with both partners
diagnosed with cancer (Baider et al., 1998).
No data were available on Hebrew BSI norms for the adult popu¬
lation. The authors, therefore, conducted a normative study to collect
data on this main measure used in the empirical cancer studies to be
included in this book (Gilbar & Ben-Zur, 2002). A representative sam¬

ple of Hebrew-speaking Israelis ages thirty-five to sixty-five, of both
genders, was tested—a working population with few language barriers
and at the starting point of vulnerability to the illness. The purpose of
compiling this database was to create measures that can be used as
norms relating to cancer patients and other ill populations. -
A Study of Israeli BSI Norms
Method
Sampling. The study was conducted by a public-opinion survey insti¬

tute. A nationwide probability sample was used: sampling units were
drawn up at random based on the geographical breakdown of the
country prepared by Israel’s Central Bureau of Statistics for popula¬
tion censuses. A location was randomly assigned to each interviewer in
each sampling unit chosen. This system ensured that the sample was
based on the total population and that the entire population had an
equal chance to be included in the sample.
The present survey was part of a study in which 1,000 households
were visited. Of these, 510 participants ages thirty-five to sixty-five
completed the survey questionnaires. The completion rate was 72%.
The research was conducted during April through July 2000.
The Questionnaire: The Hebrew version of the BSI (Derogatis & Melis-
aratos, 1983) was used with all nine subscales. It included forty-nine
items (four additional items in the original version were deleted). Par¬
ticipants were asked to refer to various physical and emotional prob¬
lems and complaints and rate their degree of suffering from each
problem during the preceding month, including the preceding week,
on a 0-4 scale, as in the original version, with 0 (not at all) and 4
(extremely). The translation of the scale from English to Hebrew was
checked by two psychologists with a high degree of agreement. The
questionnaire also included a coping measure that is described later in
the chapter. Participants were also asked to provide the following
demographic data: gender, age, place of birth, level of education (num¬
ber of years), marital status, number of children below and above age
eighteen, employment status, and whether or not they experienced a
major life event during the preceding month.
Characteristics of the Sample. The sample included 510 participants,

48.6% men and 51.4% women, average age 45.58 (SD=8.61,
range=35-65). Participants, all Hebrew speaking, were born in Israel
(54.7%), Europe (21.0%), Asia/Africa (21.0%), the United States (2.7%),
and other countries (0.6%). Their average level of education was 12.53
years (SD=2A\, range=6-21). Their marital status was 76.2% married
(or living with a partner), 6.9% single, 11.4% divorced (or separated),
and 5.5% widowed. Mean number of children was 2.41 (£0=1.48,
range 0-9), with 1.13 (SD= 1.37) and 1.27 (SZ^l.SS) below and above
age eighteen, respectively. Of the participants, 58.9% reported working
as employees, 13.6% were self-employed, 8.9% were retired, 11.4%
were housewives, 6.5% were unemployed, and 0.8% were in other cat¬
egories. For control purposes, participants were asked whether they
experienced a major life event during the preceding month, with 12.5%
reporting such an event.
Table 3.1 depicts the demographic characteristics of the men and
the women in the sample. No significant differences were found
between men and women in any of the demographic attributes apart
from work status, where more women reported less employment over¬
all, and in the housewife category {%— 67.18, /K.001, df= 4). More
women than men also reported a recent life event occurrence (%2=7.33,
/K.01, df= 1).
Results
Table 3.2 presents the means, SDs, ranges and alpha-levels of the
BSI subscales. As can be seen in the table, the means range is
0.46-0.94, with similar SDs and similar range levels for the subscales.
Alpha levels were satisfactory. The correlations between the subscales
were relatively high, in a range of .54-79.
An exploratory factor analysis with Varimax rotation revealed one
factor only, reflecting the high correlations between the subscales. The
correlations of the GSI score with the subscales were in the range of
.80-90. Table 3.3 presents the means and SDs for men and women.
No differences were found as a function of gender in the GSI or for
each subscale separately. Women, however, tended to report higher
levels of all symptoms than men, except for the hostility and phobic
anxiety subscales (see Table 3.3).
TABLE 3.1. Demographic Attributes of Men and Women in the Israeli Sample
Men [n=248) Women (n=262)
Variable M SD % M SD %
Age 45.90 8.39 45.27 8.81
Education (years) 12.67 2.54 12.41 2.27
Number of children 2.37 1.50 2.44 1.47...
Below 18 1.07 1.33 1.19 1.40
Above 18 1.30 1.34 1.24 1.35
Place of birth
Israel 55.2 54.2
Europe 19.4 22.5
Asia/Africa 22.2 19.8
United States 2.8 2.7
Other 0.4 0.8
Marital status
Married 78.9 73.7
Single 6.9 6.9
Divorced/separated 9.7 13.0
Widowed 4.5 6.5
Work status
Employee 64.0 54.0
Self-employed 19.8 7.7
Retired 8.9 8.8
Housewife 0.4 21.8
Unemployed 6.1 6.9
Other 0.8 0.8
Experienced recent life event
Yes 8.5 16.4
No 91.5 83.6
The associations between GSI and place of birth, marital status,

work status and recent life event were assessed using one-way
ANOVAs after grouping the demographic variables into larger cate¬
gories (when category size was less than 5%) and deleting the “other”
category. Marital status yielded a small though significant effect
(i'[3,505]=2.75, JK.05), with means of .68, .88, .82, and .89 for married,
single, divorced, or widowed persons, respectively. Married persons
had the lowest GSI scores and widowed persons the highest. Signifi¬
cant effects were found for the depression (/^[3,505]=2.60, p=.05) and
the psychoticism subscales (^3,5051=4.97, fK.Ol). Differences between
the four categories for the depression means were .66, .79, .78, and 1.00
for married, single, divorced, and widowed persons, respectively. Wid¬
owed persons thus scored highest in depression. The respective psy-
Table 3.2. Means, Standard Deviations, Ranges, and Cronbach Alpha Levels of the Israeli
BSI Subscales
Subscale M SD Range a
Somatization .62 .68 0-3.25 .83
Obsessive-compulsive .94 .79 0-3.66 .82
Interpersonal sensitivity .68 .71 0-3.50 .73
Depression .70 .69 0-4.00 .78
Anxiety .85 .71 0-4.00 .79
Hostility .72 .70 0-3.50 .75
Phobic anxiety .46 .61 0-4.00 .74
Paranoid ideation .91 .78 0-3.80 .73
Psychoticism .57 .62 0-3.40 .71
GSI .72 .59 0-3.28 .96
re=510; GSI=General Severity Index
Table 3.3. Means, Standard Deviations, and BSI Subscales for Israeli Men and Women
Men (n=248) Women (n=262)
Subscale M SD M SD
Somatization .58 .71 .67 .66

Obsessive-compulsive .91 .79 .98 .79
Interpersonal sensitivity .63 .74 .73 .69
Depression .69 .74 .72 .66
Anxiety .83 .76 .87 .67
Hostility .75 .72 .69 .69
Phobic anxiety .45 .64 .49 .58
Paranoid ideation .94 .82 .89 .75
Psychoticism .56 .65 .58 .60
GSI .71 .63 .74 .56
GSI=General Severity Index
choticism means were somewhat different, with .51, .82, .74, and .73 for
married, single, divorced, and widowed persons, respectively, although
married persons still had the lowest scores on this subscale.
In testing the effects of employment, the housewife category was
deleted, since it was reported by women only. The analyses thus
included employees, self-employed, retirees, and unemployed persons.
The results showed that the most distressed persons were the unem¬
ployed, followed by retirees, while the least distressed were employees.
These differences were significant (p<.05) for seven of the nine BSI
scales and for the GSI, which showed means of .67, .78, .85, and .94,
respectively, for employees, self-employed, retirees, and unemployed.
When interactions between gender and the other demographic

variables were tested on the GSI, only employment by gender interac¬
tion was significant (7^[3,438]=4,06, /K.01), with male unemployed and
retirees showing much greater distress than women of the same status.
No significant effects were found for experiencing a recent life event,
with the exception of the anxiety subscale (i'[l,508]=4.58, /<\05)ywith
means of 1.03 and .83 for the occurrence and nonoccurrence of an
event, respectively. The total score (GSI) was marginally significant
(7^1,508]=2.94, /K.09), with means of .89 and .71, respectively, for the
occurrence and nonoccurrence of an event.
The associations between GSI and age, education, and number of
children (total, and divided by age) were tested using Pearson correla¬
tions. No significant correlations were found for any of these variables,
and no significant correlations were found when computed for the indi¬
vidual BSI subscales.
Conclusions
The results of this normative sample of a Hebrew-speaking adult

population showed high internal reliabilities for the GSI and for all the
BSI subscales. The sample also indicated associations between the BSI
scores and certain demographic variables. Of the variables tested, mar¬
ital status showed a significant effect, with married people reporting
the lowest distress and widowers reporting the highest distress.
Employment status was also related to distress, with employees show¬
ing the lowest GSI score and the unemployed the highest, especially
among men. Persons who experienced a recent life event tended to
report high distress levels. These results validate the BSI as a measure
of distress, showing it to be sensitive to the effects of experiencing a
stressor, such as losing a spouse or being unemployed.
A comparison of the present results with the original BSI American
data published by Derogatis & Melisaratos (1983) reveals that the
Israeli data indicate much higher distress scores than the U.S. results.
Notably, the U.S. data were collected nearly twenty years before the
present data. An examination of more recent data collected in a British
community sample (Francis et al., 1990), however, also reveals that the
Israeli data indicate higher distress scores than the British results. These
findings lend further support to the need for normative data within the
specific culture in which empirical studies are conducted, using the BSI
for the assessment of distress evoked by a specific event such as illness

or unemployment.
Psychosocial Adjustment (PSA)
A search of the stress literature revealed a paucity of measures of

the behavioral and functional outcomes of stressful encounters. The
authors, therefore, developed a psychosocial adjustment scale intended
for use in a variety of populations and situations.
The psychosocial adjustment (PSA) scale is a 15-item scale that
measures everyday normal functioning. In a pretest study, fifty-six
items were constructed depicting functioning in five domains in every¬
day life: work, family, social relations, house care, and self-care. The
items were phrased in both positive and negative directions (e.g., “I do
my work with enthusiasm”; “I postpone house chores as much as pos¬
sible”). This initial 56-item questionnaire was completed by sixty-eight
paid students and twenty community resident volunteers and, follow¬
ing factor and correlation analyses, many items were deleted. The
result is a 15-item scale (a=.80) with three items in each domain. No
gender or age differences were observed. The correlation between the
PSA and depressive mood (Lubin, 1967) was high (-.57), remaining
high (-.52) even after partialing out social desirability. The PSA items
were rated on a 5-point scale (1—small extent, 5=large extent). A high rat¬
ing represents good functioning, and vice versa. Following the pretest
study, a community sample of 143 couples completed the 15-item scale,
with internal reliability means of .64 and .79 for men and women,
respectively (see Chapter 4).
INTERACTION ORIENTED MEASURES
Interactional theories view cognitive, perceptual, and other per¬

sonality traits as mediating the responses to stress. Enduring traits, cop¬
ing strategies, psychodynamic mechanisms of defense, and many other
personal variables enter into interactional postulations concerning
stress (Derogatis & Savitz, 1999). The discussion that follows includes
the measurement of coping, a description of an Israeli normative study
of coping, and a description of the measurement of social support.
Measuring Coping
Lazarus (1966) and Lazarus and Folkman (1984) define coping as

the behavioral and cognitive efforts to manage internal and external
demands. Based on this conceptualization, they developed a coping
measure called Ways of Coping (Folkman & Lazarus, 1985), consisting
of a series of items, each of which portrays a coping thought or action
typical of individuals under stress. The scale assesses two main modes
of coping according to function: problem-focused and emotion-focused
coping. Another coping questionnaire that was developed is Endler
and Parker’s (1990) Multidimensional Coping Inventory (MCI), which
measures three types of coping styles: task-oriented, emotion-oriented
and avoidance-oriented. A third measure is the Coping Strategies Indi¬
cator (CSI; Amirkhan, 1990; Bijttebier & Vertommen, 1997), which
assesses problem solving, seeking social support, and avoidance cop¬
ing.
Based on Lazarus’s stress theory, as well as on the behavioral self¬
regulation model (Carver & Scheier, 1985), Carver et al. (1989) devel¬
oped the COPE scale, assessing fifteen different coping strategies. Four
items relate to each strategy. Several of these strategies are based on
specific theories about the functional or adaptive value of coping. Oth¬
ers were included on the basis of extant research indicating that they
may be valuable or may stimulate adaptation. The items depict various
coping options (e.g., “I make a plan of action”; “I learn to live with it”;
“I restrain myself from doing anything too quickly”). Respondents are
asked to rate the extent that each option is used on a 4-point scale
(0 =not at all, 3=great extent).
The test-retest reliability of the COPE subscales is based on two
samples (Carver et al., 1989). Eighty-nine students completed the ques¬
tionnaire in an initial session and again eight weeks later. Earlier, a
sample of 116 students completed a nearly final version of the meas¬
urement with an interval of six weeks between the initial and the fol¬
low-up session (r=.46-.89). The internal reliabilities were in the
medium and high range (.45-92). The scale was used in both a trait
(how people usually cope) version and a state (how people cope with a
specific situation or event) version. The trait version was validated by
correlating it with personality measures of Type A, anxiety, perception
of control, and monitoring/blunting. The English COPE version was
used to assess coping in a variety of populations—psychiatric outpa-
tients (Vollrath et al., 1995), and caregivers of homosexual AIDS

patients (Gray & Hedge, 1999).
Ben-Zur and Zeidner (1995) established a short Hebrew version of
the COPE, incorporating the fifteen distinct subscales but with only
two items per scale. The subscales are active coping, positive reinter¬
pretation, planning, emotional support, instrumental support, suppres¬
sion, acceptance, mental disengagement, ventilation, behavioral
disengagement, alcohol/drug disengagement, denial, restraint, religion,
and humor. The short Hebrew version of the COPE scale was used to
assess reactions to the Gulf War (Ben-Zur & Zeidner, 1995, 1996; Zeid¬
ner & Ben-Zur, 1993), and the everyday coping of Israeli open-heart
surgery patients three to fifteen months following surgery (Ben-Zur et
al., 2000).
The purpose of the study discussed next was to assess normative
coping reactions of Israelis to everyday stressors.
A Study of Normative Israeli Coping
Method
Questionnaire and Procedure. The short Hebrew version of the COPE

scale (Ben-Zur & Zeidner, 1995) was used, with items relevant to alco¬
hol/drugs deleted. A total of twenty-eight items were included, two
items each for fourteen coping strategies. Participants were asked to
rate the extent to which they used each coping option in dealing with
stressors during the preceding month according to a 0-3 rating scale,
with 0 =not at all and 3=a great deal The data were redesignated 1-4 to
facilitate a comparison with the original COPE data (Carver et al.,
1989). Sampling and procedures, as well as the provision of demo¬
graphic information, were as described for the BSI (see earlier).
Results
Table 3.4 shows the COPE data for the fourteen COPE subscales.
The data represent the sum of the two items per scale. As can be seen
in the table, participants reported relatively high levels of active coping,
positive reinterpretation, and planning; medium levels of emotional
support, instrumental support, suppression, and restraint; and relative-
Table 3.4. Means and Standard Deviations of the Fourteen Coping Subscales and Two Main
Coping Scales
Variable M SD
Active coping 6.08 1.80

Positive reinterpretation 6.00 1.50
Planning 5.97 1.66
Emotional support 5.41 1.7l
Instrumental support 5.08 1.63
Suppression 5.32 1.59
Acceptance 5.19 1.68
Mental disengagement 4.44 1.43
Ventilation 4.59 1.68
Behavioral disengagement 4.27 1.49
Denial 3.95 1.48
Restraint 5.11 1.57
Religion 4.70 1.98
Humor 4.29 1.79
Problem-focused 5.65 1.19
Emotion-focused 4.57 0.97
71=510
ly low levels of mental disengagement, behavioral disengagement, and

denial, with somewhat higher levels of ventilation and religion.
Several exploratory factor analyses and a confirmatory two-factor
solution with Varimax rotation revealed a factor structure as depicted
in Table 3.5. Subscales were selected for each factor according to a
loading of .40 and higher, and in one case (restraint) according to the
higher loading. One factor, termed problem-focused coping, included
active coping, positive reinterpretation, planning, emotional support,
instrumental support, and suppression of competing activities. The sec¬
ond factor, termed emotion-focused coping, included acceptance, men¬
tal disengagement, ventilation, behavioral disengagement, denial,
restraint, religion and humor.
Table 3.6 shows the means and SD data for the COPE subscales by
gender. As can be seen, women were found to report more frequent use
of two types of coping strategies-emotional support and instrumental
support (i^[l,506]=9.82 and 8.31, j&<.01). The alpha levels of the two
main scales-problem-focused and emotion-focused-were .82 and .72,
respectively. The two main scales were used in the analyses that fol¬
lowed to assess associations with demographic variables. The associa¬
tions between the demographic characteristics and the main COPE
Table 3.5. Results of Factor Analysis of Fourteen Coping Subscales
Factor
Variable Problem-focused Emotion-focused
Active coping JO .00
Positive reinterpretation .68 .26
Planning M .01
Emotional support M .14
Instrumental support J)5 .07
Suppression M .29
Acceptance .30 .42
Mental disengagement .09 .68
Ventilation .27 .44
Behavioral disengagement -.05 .73
Denial -.06 .72
Restraint .44 .49
Religion .26 .43
Humor .15 M
Tt=510; Underlined values represent assignment of variables to factors
scales were found to be insignificant except for a minimal association

between problem-focused coping and age (r=.ll, /K.01).
Conclusions
The coping data were similar to those collected in 1991 in Israel fol¬
lowing the Gulf War (Ben-Zur & Zeidner, 1995), with interviewees rat¬
ing the use of coping strategies in everyday life, in terms of both specific
strategies and problem-focused and emotion-focused scales. Active cop¬
ing, planning, and positive reinterpretation were the most frequently
reported strategies in the present as well as the 1991 study, while denial,
mental disengagement, and behavioral disengagement were the least
reported in both studies. However, unlike the previous research, few
differences were found as a function of gender. In addition, the factor
structure of the two main coping scales revealed here is similar, but not
identical, to results of that used in the previous research.
Social Support Measurement
Despite differences in definitions of social support (see Chapter 1),

researchers agree that such support involves some kind of relationship
Table 3.6. Means and Standard Deviations for COPE Subscales for Men and Women
Men (n=248) Women [n=262)
Subscale M SD M SD
Active coping 6.18 1.78 6.00 1.83

Positive reinterpretation 5.96 1.55 6.05 1.46
Planning 6.05 1.59 5.90 ... L74
Emotional support* 5.17 1.65 5.65 1.75
Instrumental support* 4.87 1.65 5.29 1.61
Suppression 5.39 1.59 5.27 1.59
Acceptance 5.19 1.66 5.19 1.71
Mental disengagement 4.40 1.48 4.48 1.38
Ventilation 4.47 1.72 4.71 1.65
Behavioral disengagement 4.28 1.54 4.28 1.45
Denial 3.98 1.50 3.93 1.47
Restraint 5.22 1.58 5.03 1.56
Religion 4.60 1.99 4.81 1.98
Humor 4.43 1.81 4.17 1.78
Problem-focused 5.60 1.18 5.69 1.21
Emotion-focused 4.57 0.97 4.57 0.96
* Significant Lvalue for gender differences
transaction between individuals. Studies have explored the direct ver¬

sus the buffering effect of social support, the nature of this support, the
curative effect of such support, and the process by which social support
enhances health (Zimet et al., 1988). A number of scales have been
designed to measure social support, some comparing quantitative
measures of support (the number of friends one can turn to in a crisis)
and others qualitative measures (adequacy of social support). Most of
the research has indicated a significant relationship between measures
of social support and psychological state (see Chapters 1 and 2). Two
measures of social support are discussed next.
The Multidimensional Scale of Perceived Social Support (MSPSS)
The MSPSS scale, developed by Zimet et al. (1988), is a subjective

assessment of social support adequacy as perceived by three sources:
family, friends, and significant others. Initially, the scale consisted of
twenty-four items addressing relationships with family, friends, and sig¬
nificant others in three areas: social popularity, (e.g., “I receive invita¬
tions to be with others”), respect (e.g., “People look up to me”), and
perceived direct support (e.g., “I get the help and support I need from
my friends”). Each item was rated on a 5-point scale ranging from 1

(•strongly disagree) to 5 (strongly agree). The results of several pilot studies
led to the revised current version of the MSPSS, which consists of
twelve items that directly address social support. The items are divid¬
ed into three groups related to source of support: family, friends or sig¬
nificant other. Each of these groups contains four items. In order to
increase response variability and minimize a ceiling effect, a 7-point
rating scale ranging from 1 (very strongly disagree) to 7 (very strongly agree)
replaced the original 5-point scale.
Cronbach’s coefficient alpha has been obtained for the scale as a
whole and for each subscale. Values for the family, friends and signifi¬
cant other subscales are .87, .85, and .91, respectively. The reliability of
the total scale is .88. The test-retest reliability values for the family,
friends, and significant other subscales are .85, .75, and .72, respective¬
ly. The value obtained for the entire scale was .85 (Zimet et al., 1988).
The internal reliability of the Hebrew version, as tested by the authors
in a sample of 145 male and female Israeli community residents, was
.93, with high reliabilities obtained for the three subscales (.90-.94).
The Contact Between Generation Battery (CGB)
The sustained kinship between adults and their parents is exempli¬

fied by the common use of the term family to include not only spouse
and children but parents as well. The parent is not simply another rel¬
ative. Parents play an important part in their grown children’s lives and
vice versa. The intergenerational tie, moreover, plays an especially
important role in stressful situations.
The Contact between Generation Battery (CGB) scale, developed
by Adams (1968) and demonstrated by Bengtson & Schrader (1982),
explores the nature of parent-child relationships. The measurements
are based on the concept of social cohesion or group solidarity, which
emphasize the importance of solidarity in analyzing both macro- and
microsocial organization (Parsons, 1951).
Five types of variables are assessed: 1) family structure and house¬
hold composition (i.e., number of living parents, children, grandchil¬
dren, and their geographic proximity; and composition of the
individual’s household); 2) frequency and type of activities shared by
middle-aged children and their aging parents (associational solidarity);
3) closeness with parents (affectional and consensual solidarity);
4) exchanges of assistance and support (functional solidarity); and 5)

norms regarding how adult children keep in touch with parents.
Response categories vary from scale to scale. For example, items meas¬
uring frequency of kin activity are coded as follows: 1=more than once a
month, 2=several times a year, 3=once or twice, and never. Closeness is
measured with Likert-type 1-5 or 1-4 scales. Exchange of assistance
and support is measured on 1-4 scales (1=not at all; 4=a lot).
MEASUREMENT OF PSYCHOSOCIAL ADJUSTMENT TO

PHYSICAL ILLNESS
A number of psychosocial instruments have been developed for

assessing the psychosocial adjustment to physical illness and its treat¬
ment from a variety of perspectives. Several measures are discussed
next.
The Psychosocial Adjustment to Illness Scale (PAIS)
This measure, developed by Derogatis (1975b), covers all aspects of

function: health perception; life activities, such as domestic and social
family relations; and concerns about problems associated with the ill¬
ness. Although applicable to all types of illness, PAIS has been found
to be a particularly reliable instrument for examining the psychosocial
adjustment of cancer patients and their families. The questionnaire
contains forty-five items, each composed of four statements rated on a
4-point scale from 0 (no problems) to 3 (many difficulties). The question¬
naire covers seven areas: health care orientation, vocational environ¬
ment, domestic environment, sexual relationships, extended family
relationships, social environment, and psychological distress. The scale
provides information on global adjustment (total range 0-135), as well
as adjustment by specific area. In scoring the PAIS, the rating of items
within each of the seven domains are summed to give seven domain
scores, which are summed again to yield a total PAIS score. Higher
scores on the PAIS indicate poorer adjustment.
The internal consistency of the PAIS has ranged from a low of .63
on the health care orientation subscale to a high of .81 on the voca¬
tional environment subscale, while preliminary evidence of the validi-
ty of the PAIS as a measure of psychosocial adjustment has been

reported (Derogatis & Lopez, 1983). One area-sexual relationships—
has been excluded in several studies, under the assumption that ques¬
tions on this topic would prove embarrassing to parents of adult cancer
patients. The wording “your illness” has been rephrased in the parent
version to “your child’s illness” in questions on the impact of the child’s
diagnosis on the parent’s adjustment to the illness. Similarly, the word¬
ing “your illness” has been rephrased to “your spouse’s illness” in the
spouse’s version of the questionnaire.
The Hebrew version (Soskolne & Kaplan De-Nour, 1989) yielded a
Cronbach alpha of .95 when tested on sixty-eight dialysis patients, and
.93 for their spouses.
The Instrumental Activities of Daily Living (IADL) Scale
Developed to assess the functioning of elderly persons (Lawton,

1971), the IADL is a systematic attempt to objectively measure level of
personal function in a variety of daily activities ranging from self-care
to social activity. It is also a self-maintenance scale, testing a series of
eight task areas: ability to use the telephone, shopping, food prepara¬
tion, housekeeping, laundry, transportation, responsibility for own
medication, and ability to handle finances. Every area that may affect
the older person’s emotional state is examined. The respondent
receives a score of 1 for each item if that respondent’s competence
reaches a minimal level or higher. Thus, for telephone use, the respon¬
dent receives one tally if the respondent can answer the telephone or
do better, while on the shopping item, a tally is given only if the
respondent can take care of all shopping needs independently.
The scale was initially tested in a sample of 265 elders obtained
from various sources, all aged seventy and over, diverse and unselect¬
ed as to gender (97 were male, 168 female), race, and economic level.
Information on daily activities was obtained from a social worker, the
subject’s family, personnel in a residence, friends, or a combination of
all these sources. The rating was done by a social worker rather than by
the respondent. The validity of the resulting scale was tested by deter¬
mining the correlation between the IADL, the Physical Self-Mainte¬
nance Scale (PSMS), the Physical Classification scale (PC), the Mental
Status Questionnaire and the Behavior and Adjustment rating scales
(BA). Another sample of 180 subjects was used for validation. A Pear-
son correlation between the measures showed significant correlations

at the .01 level, with the exception of the BA-IADL correlation (Law-
ton & Brody, 1969).
Burden Measurement
Research findings generally indicate that the provision of high lev¬

els of care to dependent relatives when they are chronically or termi¬
nally ill engenders difficulties for caregivers and, in most cases, burden
(see Chapters 1, 2). Burden has been broadly defined and differential¬
ly measured. The definition ranges from emotional costs and feelings of
embarrassment and overload to specific changes in caregivers’ day-to-
day lives, such as disruption of daily routine, financial difficulties, role
strain and deterioration of physical health (Poulshock & Deimling,
1984; Zarit et al., 1986). Several researchers divide the concept of bur¬
den into two components: subjective and objective, highlighting the
two main aspects of burden—personal strain and role strain. The per¬
sonal-strain factor reflects the subjective dimension of the caregiver’s
emotional responses to the caregiving experiences, such as feeling sat¬
isfied with the experience or feeling angry toward the patient. The role-
strain factor represents the more objective dimension of burden,
reflecting the level of change in various aspects of the caregiver’s life,
such as not having enough personal time (Whitlatch et al., 1991).
The Caregiver Burden Scale
The burden questionnaire developed by Zarit et al. (1980), based

on the burden concept, is used in most studies that assess degree of
caregiver burden. It consists of a 29-item self-report inventory, which is
administered to the primary caregiver during the assessment interview.
The questions selected were based on clinical experience with care¬
givers and cover the following areas: caregiver’s health, psychological
well-being, finances, personal and social life, and relationship between
caregiver and the impaired person. Each item is composed of five state¬
ments scored on a 5-point scale ranging from 1 [noproblems) to 5 (many
difficulties). Scores on the Caregiver Burden Scale can range from 29 to
145—the higher the score, the greater the feeling of burden. The scale
demonstrated good reliability and validity for this instrument (Zarit et
al., 1980; Zarit & Zarit, 1982).
A Hebrew version was translated and validated (Lowenstein, 1994).

Cronbach alpha was .86. The alpha range of the five factors was
0.74-0.96 for the English version. A similar range was obtained for the
Hebrew version (0.69-0.91; Werner, 1999).
CONCLUSIONS
The measurements described earlier assess psychological distress,

psychosocial adjustment to illness, coping strategies, and social support.
They have been developed for persons in a stress situation generally
and for ill persons specifically. The only scale developed especially for
caregivers is the Caregiver Burden Scale (Zarit et al., 1980).
In the absence of varied caregiver measurements, the measurement
research discussed earlier uses the same stress measures that are
applied to the patient, with some adjustment to the caregiver role (hus¬
band, wife, parent, adult child). An advantage of using a similar meas¬
urement is that it clearly differentiates between those variables that
predict greater caregiver psychological distress for the patient vis-a-vis
for the caregiver. In addition, the Israeli study provided data on distress
and coping with everyday stressors, enabling a comparison of caregiv¬
er and patient reactions to cancer with normative data.
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30-41.
Chapter 4
PRIMARY-CAREGIVER DISTRESS:
THREE STUDIES
DISTRESS OF SPOUSES OF
BREAST CANCER PATIENTS
Introduction
Cancer is the second most common cause of death in Western soci¬

ety, with breast cancer the most common cancer among women. In
1996, deaths from the disease in the United States were estimated at
44,000 annually, with 185,000 anticipated newly diagnosed cases
(Rowland & Massie, 1998; Epping-Jordan et al., 1999). However, early
detection has led to a significant increase in the life expectancy of the
majority of women diagnosed with the disease.
Still, women with breast cancer face a major stressful encounter,
starting with the self-discovery of a growth in the breast, by her physi¬
cian, or through a mammograph; through tests to determine malig¬
nancy by means of a fine-needle aspiration (FNA) or biopsy; surgery to
remove the tumor (lumpectomy) or the entire breast (mastectomy);
possible breast reconstruction; treatment (chemotherapy, radiation,
hormonal therapy); and follow-up checkups (Rowland & Massie, 1998).
This long process affects the patient in the form of distress and symp¬
toms of anxiety and depression (Epping-Jordan et al., 1999). She must
cope with the threat of the recurrence of the illness, the side effects of
medical treatment, and the feelings of isolation, stigma, and guilt com¬
mon to cancer patients generally (Spencer et al., 1998). Breast cancer,
87
in short, is a source of threat for most women. However, the frequen¬

cy, extent, and length of the psychological reactions to the disease
depend on a multiplicity of factors that are discussed next.
Factors in the Patient’s Adjustment to Breast Cancer
A major factor in the patient’s adjustment to breast cancer consists

of the medical variables, which include stage of the disease at diagno¬
sis, treatment required, prognosis, and rehabilitation process. For
example, surgery may involve a lumpectomy with radiation, or a mas¬
tectomy, each procedure affecting the patient differently. A lumpecto¬
my has been shown in many studies to facilitate adjustment to some
degree in terms of body image and sexual relationships, although it
may also induce ongoing fear regarding tumor cells left in the body or
the long-term effects of radiation. However, in contrast to other
researchers, Carver et al. (1998) did not find associations between type
of surgery and extent of body image changes or distress. Type of treat¬
ment (i.e., adjuvant chemotherapy, hormonal therapy, or radiation)
may engender changes in the body (e.g., loss of hair or weight gain),
which can exacerbate psychological distress.
In recent years the greater involvement of patients in decisions con¬
cerning the treatment of the disease is another important factor in
adjustment. Patients today are consulted about preferred type of sur¬
gery (lumpectomy or mastectomy) and, while this decision may be
highly stressful, the process of active involvement can lead to better
adjustment in the long run (Rowland & Massie, 1998).
Another factor that may affect the patient’s reaction to the disease
consists of demographic variables. For example, each age group feels
distress, often from different sources. Young women may be threatened
most by death, loss of femininity, loss of the opportunity to acquire a
partner, or loss of the opportunity to have, or raise, children. Indeed,
Vinokur et al. (1990) found that younger women perceived breast can¬
cer as more threatening than older patients, and their mental health
was somewhat poorer than that of the older patients. Older women
may be under stress because of concurrent losses of other kinds and dif¬
ficult life events. Educational level can also be an important factor: a
high level of education is viewed as a resource in coping with stress
(e.g., Lazarus & Folkman, 1984). Neither of these variables, however,
Primary-Caregiver Distress 89
was shown to be related to anxiety or depression in recent studies (e.g.,

Epping-Jordan et al., 1999).
The adjustment of women to breast cancer may also depend on a
variety of individual psychological characteristics, such as coping
responses (see Chapter 5), personality, attitudes, a combination of con¬
trol belief and coping (Osowiecki & Compas, 1999), and a tendency
toward optimism (Epping-Jordan et al., 1999).
Social support by the family, perceived as a positive factor in
women’s outlook on life and social functioning generally (Bloom &
Spiegel, 1984), has been shown to be related to the adjustment of
women with metastatic breast cancer (Spiegel et al., 1983). In fact, one
of the most important elements in the patient’s adjustment is the reac¬
tions of the family and, specifically, the relationship with husband or
life partner. The psychosocial aspect of cancer, many researchers agree,
is a family affair and not the patient’s problem alone (e.g., Baider &
Kaplan De-Nour, 1988; Lewis, 1990). Living with cancer creates a
stressful situation for the entire family and affects each family member,
which, in turn, may affect the patient’s adjustment to the illness (Given
et al., 1993; Harrison et al., 1995). Diverse findings, however, are
reported regarding the extent of the effect of the illness on the psy¬
chosocial adjustment of the family generally and on the patients and
their spouses in particular.
The Spouses’Adjustment to Breast Cancer
Several studies focus on spouses of breast cancer patients, indicating

divergent results when adjustment to the illness is assessed. Northouse
and Swain’s study (1987) of the psychological and psychosocial adjust¬
ment to the illness of fifty couples three days and again thirty days after
the patient’s mastectomy, and a follow-up study of forty-one of the cou¬
ples eighteen months later (Northouse, 1989) showed no significant dif¬
ferences between patients and spouses at any point in psychological
adjustment as measured by the BSI (Derogatis & Melisaratos, 1983).
Similarly, Ptacek et al. (1994), investigating distress and coping in
thirty-six breast cancer patients and their husbands retrospectively (fif¬
teen months on average after receiving treatment), reported that the
outcome variables of satisfaction with relationships and mental health
(distress and well-being) did not differ between spouses. When couples
were interviewed a long time after treatment, however, husbands
reported better mental health, and patients reported greater satisfaction

with marriage than was the case for couples a short time after treatment
(Placek et al., 1994). Northouse (1996), comparing the emotional dis¬
tress of husbands in a newly diagnosed group versus a recurrent group,
found no difference in emotional distress (BSI) and social support
between the groups, although the recurrent group scored higher in role
adjustment problems (PAIS), uncertainty, and hopelessness. The dis¬
tress of the spouses was only slightly higher than the normative level
(compared with BSI norms), although the time of interview—about a
year after diagnosis—may have engendered an adaptation to the illness.
Hoskins’s (1995) extensive study of breast cancer patients and
spouses seven and ten days; one, two, three, and six months; and one
year post surgery, testing the effects of the illness over time, revealed a
decrease for both spouses in emotional distress and negative emotions
and an increase in psychological well-being and life-role performance.
The patients’ psychological distress was greater than their spouses’ at
several points in time following diagnosis, while the spouses’ well-being
was poorer than the patients’, suggesting that the spouse’s adjustment
was also impaired (Hoskins, 1995). Findings by Baider and Kaplan De-
Nour (1988), too, pointed to more psychosocial problems (PAIS) for
spouses than for patients.
Northouse (1996), studying negative effects of breast cancer on hus¬
bands, cited research in which husbands reported shock, fear, and sad¬
ness (Zahlis & Shands, 1991), as well as feelings of powerlessness
(Wilson & Morse, 1991) in the face of cancer. In some cases husbands
reported higher levels of these feelings than their wives following diag¬
nosis (Given & Given, 1992). In another study, Northouse et al. (1998)
compared breast cancer patients and their husbands with a control
group of couples in which the wife was diagnosed with benign breast
disease. Measures of appraisal, distress, support, and functioning were
obtained a few days following diagnosis, sixty days later, and one year
later. Both distress (BSI) and functioning problems (PAIS) of the hus¬
bands were lower than their wives’ in the cancer group but were high¬
er than those observed in the control group along the three time points.
The studies cited show a variety of outcomes, with husbands react¬
ing with levels of distress that are higher, similar to, or lower than those
of the patients. Moreover, in most of the research (an exception is Nor¬
thouse et al., 1998), the absence of a control group or normative data
precludes a clear-cut conclusion regarding effects on spouses.
Even when distress, functioning, or well-being of spouses are no

different from normative levels, other processes may affect caregiving
and support. In discussing the functioning of close relationships during
crises such as illness, Bolger et al. (1996) suggest that while significant
others provide both emotional and practical support, the chronic expo¬
sure to crisis difficulties, and crisis-victim distress, may overwhelm the
significant other, reducing the ability to give support. The results of
Bolger et al.’s (1996) longitudinal study of 102 newly diagnosed breast
cancer patients and their significant others (72% husbands) confirmed
that patients’ distress eroded the support of significant others, a process
that may be explained by the mediating effects of spousal distress.
Thus, patient distress may affect the patient both directly and indirect¬
ly—through its detrimental effect on the emotional support of the
spouse.
Research Aims and Hypotheses
This study compares spouses’ and patients’ distress and adjustment

to breast cancer, using normative and community data to assess the
levels of these disease outcomes. It investigates the similarities and dif¬
ferences in patterns of psychological distress and psychosocial adjust¬
ment of spouses and patients, focusing on the spouse’s adjustment to
the illness. The spouse becomes the main caregiver to the patient, aid¬
ing her during all phases of the illness while at the same time attending
to other matters in the personal, family, work, and social domains.
The main purpose of the study is to explore the association of
spousal distress and adjustment with that of the patient’s, and to assess
the demographic and illness factors that affect spousal distress based on
the model presented in Chapter 2. According to the model, patient dis¬
tress and adjustment affect caregiver distress and adjustment, leading to
the first hypothesis:
1. Spousal distress and adjustment levels are positively related to patient dis¬
tress and adjustment levels. Furthermore, the model suggests that a pletho¬
ra of variables, including patient demographic and illness variables as
well as spouse demographic variables, will affect distress. According to
the stress literature (e.g., Lazarus & Folkman, 1984; Moos & Scheffer,
1993), certain sociodemographic variables such as age and education
are considered resources that can aid people in coping with the threat
of the disease and thus reduce distress. In contrast, illness variables
such as type of surgery may elevate distress due to the threat they entail
regarding quality of life, while participation in decision making regard¬
ing surgery may reduce distress because it may lead to feelings of con¬
trol and mastery, considered to be resources in coping with stress. Data
on these variables in relation to breast cancer, however, are scarce, and
some studies do not show these anticipated relationships (e.g., Epping-
Jordan et al., 1999). The second hypothesis, therefore, maintains:
2. Demographic and illness variables are related to distress and adjustment
of the caregiver. The testing of the demographic and illness variables was
carried out without formulating explicit directional hypotheses. Last,
the study tests a path model in which patient distress and functioning
are dependent on demographic and illness variables and affect care¬
giver distress and functioning.
METHOD
Breast Cancer Group: Sample
The sample consisted of seventy-three married breast cancer

patients being treated at two oncology clinics in northern Israel in
1998-99 two to six months after diagnosis, and their spouses. All were
in Stage I or II of the disease. The patients’ age ceiling was fixed at
sixty-six to prevent the confounding effects of old age. Of a total of
eighty-one patients who were requested to participate, two refused to
be interviewed and six did not wish their spouses to be interviewed.
The spouses’ and patients’ demographic attributes are given in
Table 4.1. The table shows that spouses were somewhat older than
patients (M=55.6, range 33-86; 44=52.24, range 30-66, respectively).
Both had similar levels of education (A4=12.92, range 4-21; M=\2.15,
range 0-21, respectively). Most of the husbands and the patients were
born either in Israel or in Europe/United States (72.9% and 81%,
respectively). Fifty-five percent of the patients and 74% of the spouses
were employed during the interview period.
Table 4.2 presents information on medical aspects. Most of the
patients had undergone a lumpectomy (79.2%). Most (95.8%) were cur-
Table 4.1. Means, Standard Deviations, and Percentages of Demographic Variables for
Spouses and Patients in Breast Cancer Sample
Demographic Variables Spouse (Husband) Patient (Wife)
Mean age in years (SD) 55.60 (9.94) 52.24 (8.23)
Mean level of education (SD) 12.92 (3.82) 12.15 (3.91)
Mean number of children (SD) 2.68 (1.10) 2.52 (1.11)
Work outside the home (%)
Yes 74 55
No 26 45
Place of birth (%)
Israel 48.6 45.9
Europe/United States 24.3 35.1
Unknown 5.4 5.5
rt=l 3
rently under medical treatment: chemotherapy (63.9%), radiation treat¬

ment (51.4%), or hormonal treatment (12.5%), with 26.4% receiving
both chemotherapy and radiation, and 5.6% receiving both radiation
and hormonal treatment. Thirty percent of the patients reported an
occurrence of cancer in a relative. The decision concerning surgery
was reported as made mostly by the physician alone (37% and 49.3%
for patients and husbands, respectively) or by the physician, wife, and
husband together (37.1% and 44.5%, respectively).
Breast Cancer Group: Questionnaires and Procedure
1. The Brief Symptom Inventory (BSI): The BSI (Derogatis & Melis-
aratos, 1983) was used to assess psychological distress. The BSI
includes nine subscales: somatization, obsessive-compulsive, interper¬
sonal sensitivity, depression, anxiety, hostility, phobic anxiety, para¬
noid ideation, and psychotism (see description in Chapter 3 of global
indexes and psychometric properties of the BSI). It consists of fifty-
three items, rated on a 5-point distress scale (0-not at all; A-extremely).
Table 4.3 shows the means, SDs and Cronbach alpha levels of the nine
BSI subscales and their total GSI for both spouses and patients. Most
of the spouses’ scores are lower than their wives’, with medium to high
alpha levels for both patients (range .66-91) and spouses (range
.65-83), and high alpha levels for the GSI of both (.97 and .96, respec¬
tively). The correlations between the nine BSI subscales are relatively
high (range .48-.80).
Table 4.2. Medical Variables and Involvement in Decision Making for Breast Cancer Sample
Illness Variables %
Type of surgical intervention

Lumpectomy 79.2
Mastectomy 20.8
Treatment
Chemotherapy 63.9 --
Radiation 51.4
Hormonal 12.5
Follow-up 4.2
Cancer history inpatient’s family of origin
Yes 30.0
No 69.9
Kinship status
Mother 9.6
Sister 9.6
Aunt 11.0
Grandmother/niece 5.50
Patient involvement in decision concerning surgery (wife’s report)
Physician only 37.0
Patient only 5.5
Patient and spouse 4.1
Patient and physician 16.4
Patient, spouse, and physician 37.1
Spouse’s involvement in decision concerning surgery (husband’s report)
Physician only 49.3
Patient only -
Patient and spouse 2.7
Patient and physician 5.5
Patient, spouse, and physician 44.5
n=7 3
2. Psychosocial Adjustment (PSA): The PSA is a 15-item scale developed

specifically for the present research. The items depict functioning in five
domains in everyday life: work, family, social relations, house care, and
self-care (see Chapter 3). The items were phrased in both positive and
negative directions (e.g., “I do my work with enthusiasm”; “I postpone
the house chores as much as possible”). The total score consists of the
mean over the fifteen items after reversing the negative items.
The PSA items were rated on a 5-point scale (\=small extent, 5=large
extent), with satisfactory internal reliability, as can be seen in Table 4.3.
A high mean rating score represents good functioning, and vice versa.
3. A Demographic and Medical Questionnaire: The questionnaire covered
age, education, place of birth, number of children, employment, and the
Table 4.3. Means, Standard Deviations, and Alpha Levels of BSI Subscales and BSI and
PSA Total Scores for Breast Cancer Sample
Spouses (husbands) Patients (wives)
BSI Subscales M SD a M SD a
Somatization .54 .65 .80 1.41 1.07 .88
Obsessive-compulsive .71 .71 .81 0.99 0.85 .79
Interpersonal sensitivity .53 .70 .83 0.91 0.99 .84
Depression .69 .79 .83 1.00 0.98 .87
Anxiety .90 .69 .79 1.27 1.11 .91
Hostility .71 .78 .81 0.77 0.78 .76
Phobic anxiety .32 .45 .65 0.69 0.73 .66
Paranoid ideation .73 .70 .65 0.78 0.82 .68
Psychoticism .47 .62 .73 0.70 0.74 .69
GSI .63 .57 .96 0.98 0.79 .97
PSA 3.46 .62 .74 3.54 0.73 .78
n=73; GSI=General Severity Index; PSA=Psychosocial Adjustment; The scale includes four
additional items that were not analyzed here
following medical data: type of surgery, type of treatment, cancer in

patients’ relatives, and involvement in decisions concerning surgery.
The interviews took place at the participants’ homes following their
agreement to be interviewed. The interviews were conducted sepa¬
rately with each spouse and took place in the evening, as most of the
couples worked during the day. Each interview took 30-45 minutes.
The research was approved by a human-subject ethics committee.
Community Group: Sample
A control group of 143 healthy married couples constituted the com¬

munity sample. The husbands’ and wives’ demographic characteristics
are shown in Table 4.4. The sample was on average slightly younger
than the cancer sample and had a higher average level of education. A
higher proportion worked outside the home. Over 60% were Israeli.
Community Group: Questionnaires and Procedure
The community sample completed questionnaires that included

four BSI subscales (see Table 4.5), the PSA (Table 4.5) and demo¬
graphic data. Distress and everyday functioning were rated in relation
to feelings and behaviors in everyday life. The sample was a conven-
Community Husband and Wife Sample
Demographic Variables Husband Wife

Mean level of education (SD) 14.58 (2.90) 15.14 (2.46)

Yes 94.2 83.9
No 5.8 16.1
Place of birth (%)
Israel 60.6 72.0
Europe/United States 28.2 18.9
Asia/Africa 9.9 7.0
Unknown 2.1 2.1
r=143
Table 4.5. Means, Standard Deviations, and Alpha Levels of Four BSI Subscales and PSA
Scores for Community Husband and Wife Sample
Husbands Wives
BSI Subscales Mean SD a Mean SD a

Somatization .45 .51 .75 .48 .51 .74
Depression .56 .53 .78 .68 .61 .81
Anxiety .82 .57 .73 .86 .59 .76
Hostility .83 .71 .79 .68 .54 .71
PSA 3.55 .43 .64 3.61 .54 .79
rc=143; BSI=Brief Symptom Inventory; PSA=Psychosocial Adjustment
ience sample, with students recruiting healthy participants in an age

range of 30-70. The psychometric data shown in the table suggest
acceptable alpha levels, with husbands and wives showing similar lev¬
els of distress and functioning.
Results
Comparisons of Patients’ and Spouses9 Adjustment Measures,

Breast Cancer Sample
Table 4.6 presents the patients’ and spouses’ means for the Tscores
of nine BSI dimensions, the GSI distress scores and the PSA scores.
The T scores were computed by separately subtracting the means of
Table 4.6. TScore Means, t Values and Correlations between Spouses’ and Patients’ Adjust¬
ment Scores in the Breast Cancer Sample
Pearson
BSI Subscale Spouses Patients t test V
Somatization 49.34 61.31 -6.06**** .22
Obsessive-compulsive 47.40 50.13 -2.26* ,46****
Interpersonal sensitivity 48.58 52.68 -2.55** .38***
Depression 50.00 54.29 -2.93** Cjg****
Anxiety 50.88 55.96 -2.76** ^7***
Hostility 49.48 51.04 -1.04 .33**
Phobic anxiety 47.98 53.42 -3.75*** .29**
Paranoid ideation 47.47 48.52 -0.81 .38***
Psychoticism 48.59 52.02 -2.37* .38***
GSI 48.75 54.20 -3.71**
PSA 3.46 3.54 -1.01 ,43****
«=73; * /k.05; ** /K.01; *** fK.001; ****/K.0001; GSI=General Severity Index; PSA=Psy-
chosocial Adjustment
men and women in the normative sample from the spouses’ and
patients’ scores, respectively (a Tscore is computed by creating a nor¬
malized standard score, which is multiplied by ten and added or sub¬
tracted from fifty). The spouses’ scores for reported distress were
significantly lower than the patients’ in seven of the nine dimensions as
well as the total GSI, but were similar for PSA. Pearson correlations
between the two measures of adjustment to illness (GSI and PSA) for
both patients and spouses were significant (r=-.56 and -.45, respec¬
tively, p<.0001). All nine BSI subscales were negatively correlated with
the PSA for both wives (between -.59 and —.41) and husbands
(between -.51 and -.28). Psychological distress was thus correlated with
psychosocial adjustment for both spouses.
Figure 4.1 shows the Tscores for patients and spouses. The patients’
scores are higher than the normative means for most scales, while the
spouses’ scores are clustered around the average points.
Testing the First Hypothesis
According to the first hypothesis, patients’ and spouses’ distress, as

well as psychosocial functioning, are positively correlated. Table 4.6
reveals that the patients’ and spouses’ psychological distress for eight of
the nine dimensions and the GSI were significantly positively correlat¬
ed, as were the PSA scores. This hypothesis, therefore, was confirmed.
Figure 4.1. Tscores means for Spouses and Patients for the Nine BSI Subscales and GSI
in the Breast Cancer Sample
—o— Spouses
—Patients
T score _ _
rc=73; SOM=Somatization; OC=Obsessive-Compulsive; IS=Interpersonal Sensitivity;

DEP=Depression; ANX=Anxiety; HOS=Hostility; PA=Phobic Anxiety; Pb=Paranoid
Ideation; PSY=Psychoticism; GSI=General Severity Index.
Since the patients’ and spouses’ demographic variables were corre¬

lated, partial correlation analyses were conducted controlling patients’
and spouses’ age {r=.89) and education (r=.64), which were highly cor¬
related. The partial r for the GSI was .53 (/K.0001) and for the PSA .38
(/K.001), revealing that the positive correlations between spouses’ dis¬
tress and psychosocial functioning remain even after controlling for the
variables of age and education.
Testing the Second Hypothesis
To test the second hypothesis, correlations were computed between

demographic variables (see Table 4.7) and illness-related variables (see
Table 4.8), and the GSI and PSA of both spouses. Table 4.7 shows that
few of these variables were correlated with psychological distress and
psychosocial adjustment of the husbands. Only work status showed an
association with the PSA, with employed husbands reporting better
Table 4.7. Correlations Between Demographic Variables of Spouses and Patients, Psychological
Distress, and Psychosocial Adjustment in the Breast Cancer Sample
Spouse Patient
Demographic Variables GSI PSA GSI PSA

Patient
Agep -.01 -.10 -.07 -.17
Education13 -.04 .10 -.20 .41***
Place of births .25* -.20 .29* -.36**
Work statuss .10 -.11 .20 -.31**
Number of children^' -.08 -.03 -.03 -.08
Spouse
Agep .12 -.17 .02 -.21
Education1" .07 .16 -.25* .46***
Place of births .12 -.13 .14 -.21
Work statuss .13 -.30** -.03 -.22
Number of children13 -.01 -.05 .05 -.10
n=73; * p< .05; ** p< .01; *** p< .001; P=Pearson; S=Spearman; GSI=General Severity
Index; PSA=Psychosocial Adjustment. Place of birth: 1 - Israel, Europe/United States;
2 - Asia/Africa. Work status: 1 - employed outside home; 2 - not employed outside home
functioning than unemployed ones. The same result was found in step¬
wise regressions using demographics as the independent variables.
In contrast, patients’ education was positively related to their PSA,
while place of birth and work status were negatively related to these
outcomes. The same results were obtained when stepwise regressions
were applied to the data: patients born in Asia/Africa reported lower
functioning (and higher distress levels) than native-born or European-
born Israelis, and employed women reported better functioning than
unemployed women.
Table 4.8 reveals that only one significant effect was found in the
correlation analysis for illness variables: number of ill relatives (i.e.,
risk) was related positively to patients’ GSI.
In sum, the second hypothesis was confirmed for only a few of the
demographic or illness variables.
Testing the Model
To test the complete model, the first regression analysis, conducted

separately for spouses’ GSI and PSA, used these outcomes as the
dependent variables, with patients’ GSI, PSA, age, education, work sta-
Table 4.8. Correlations between Illness-Related Variables and Spouses’ Adjustment in the
Breast Cancer Sample
Spouse Patient
Illness-Related Variables GSI PSA GSI PSA
Type of surgery8 -.11 .09 -.09 -.05

Treatment8 .06 .04 -.01 .00
Number of ill relatives1. .12 .13 .23* .06
Spouse involvement in decision8 -.12 -.05 -.18 .11
Patient involvement in decision8 .12 .04 -.20 .17
ra=73; * fK.05; P=Pearson; S=Spearman; GSI=General Security Index; Psychosocial

Adjustment.
tus, illness, and type of surgery and cancer in relatives used as inde¬
pendent variables. In the next regression analysis, patients’ demo¬
graphic variables and illness variables were used as independent
factors, with their GSI and PSA as dependent variables.
The results are shown in Figure 4.2. The figure shows that in line
with the model, patients’ GSI and PSA are highly related to spouses’
GSI and PSA, respectively. Of patients’ personal variables, higher edu¬
cation level and work status (working) are related to their PSA, while
place of birth (Asia/Africa) is related to high patient GSI scores. At
variance with the model, illness variables did not contribute to spousal
distress or functioning.
Comparisons with the Community Sample
Table 4.9 shows the means, T scores and Pearson correlations of

husbands and wives in the community sample. Unlike the cancer sam¬
ple results (see Table 4.6), there are few differences or correlations
between the scores. In addition, when the four BSI subscales were cor¬
related with the PSA, only the depression subscale showed significant
associations for both husbands and wives (r= -.47 and -.44, respec¬
tively; /K.001).
Comparisons between the community sample and the cancer sam¬
ple for each subscale show significant differences between wives’ som¬
atization, depression, and anxiety (all /K.01), but no differences are
observable for husbands. However, an inspection of the data suggests
that some husbands in the cancer group may have registered more
extreme distress scores. To test this possibility, the BSI scores were con-
FIGURE 4.2 Path Analyses of Spouses’ GSI and PSA Using Patients’ Attributes as Inde¬
pendent Variables in the Breast Cancer Sample
n=73; i?2 = adjusted scores; numbers near arrows represent standard beta coefficients;
GSI = General Severity Index; PSA = Psychosocial Adjustment.
Table 4.9 Comparisons and Correlations of Husbands’ and Wives’ TScore Means in the
Community Sample
Husbands Wives Pearson

BSI Subscales M M 1-test . r
Somatization 48.15 47.17 1.24 .21**

Depression 48.18 49.51 -1.65 .32***
Anxiety 49.88 49.90 0.03 " .10'
Hostility 51.06 49.84 -1.21 .09
PSA 3.55 3.61 -0.46 .21**
n= 143; * fx.05; **/K.01; *** /x.001; BSI=Brief Symptom Inventory; PSA=Psychosocial

Adjustment.
verted into 0 (counts of 0, 1, 2) or 1 (counts of 3 and 4 scores). The t-test

analysis of these results revealed that husbands in the cancer group
scored higher than in the community sample on the depression sub¬
scale (means of .10 [»SZ>=.19] vs. .04 [&D=.12], £=2.44, p=.0\).
Multiple regression analyses were applied to each of the husbands’
subscales-somatization, anxiety, depression and hostility—in each sam¬
ple, using the matching wives’ subscale as the independent variable.
Place of birth did not prove significant in these analyses and was not
used. High correlations between husbands’ and wives’ ages led to the
use of husbands’ ages only, together with husbands’ and wives’ educa¬
tional levels and work status.
The somatization subscale showed no significant effects for either
sample. The husbands’ anxiety subscale was significantly associated
with wives’ anxiety in the cancer sample, with multiple i?2=.19
(T[6,64]=2.44, p<.05) and the only significant factor consisting of wives’
anxiety (j3=.43, pc.001). The effects in the community sample were not
significant (multiple R2=.03, 7*Cl). The same pattern was observed for
husbands’ hostility in the cancer sample (multiple R2=.23
[T(6,64)=3.25, pc.01; wives’ hostility (3=44, /K.001]), while the effects
in the community sample were, again, not significant (R2=.06, 7*Cl.5).
The results of the PSA analysis for the cancer sample were multiple
R?=.24, T(6,64)=3.44, pc.01. Two factors were significant: wives’ PSA
((3=43, pc.001), and husbands’ work status ((3=—.26, pC.05). No such
effects were observed in the community sample. The analysis for hus¬
bands’ depression in the cancer sample showed multiple R2=.37
(T[6,64]=6.36, /K.0001), with a significant effect for wives’ depression
((3=59;/K.001). The community sample showed similar, though much
smaller, effects for husbands’ depression (multiple 7?2=.ll,
i^[6,117]=2.53, p<.05; wives (3= 33, /K.001). Thus, the husbands’ anxi¬
ety, hostility, functioning, and level of depression depended mainly on
the wives’ corresponding scales in the cancer sample, while no such
effects (or much smaller effects in the case of the depression subscale)
were observed for the community sample.
Discussion
The study focused on seventy-three spouses of breast cancer

patients. First, their psychological and psychosocial adjustment to the
illness was compared with patients’ distress and functioning, and a
community sample was used for control purposes. A comparison of
the patients’ and spouses’ adjustment patterns showed that the spouses
reported fewer symptoms of psychological problems, as measured by
the GSI, than their spouses. Similar results were obtained in prior
research (Hoskins, 1995; Northouse et al., 1998). No differences
between patients and spouses were found on the psychosocial adjust¬
ment measure. It appears, therefore, that both spouses tried to live
normal lives, continuing with everyday tasks and events such as work¬
ing, caring for home and self, and maintaining contact with relatives
and friends.
In comparing the spouses and patients with a community sample,
the patients scored higher in distress than the wives in the community
sample, while, in contrast to results found by Northouse et al. (1998),
the husbands showed similar levels in both groups. One possible expla¬
nation for this effect is the timing of the study, which was conducted
several months after diagnosis and surgery, allowing the spouses time
to adjust to the situation. A similar explanation was given by Northouse
in an earlier study (1996) for the absence of effect on husbands. Anoth¬
er possibility is that the husbands tend to avoid or repress their distress.
Chapter 5 tests this possibility by correlating distress with denial and
avoidance.
According to the first hypothesis, spouse caregiver distress and
functioning are related to patient distress and functioning. This
hypothesis was highly confirmed, with all correlations between spouse
and patient distress and functioning levels showing significant positive
values. Some of the other findings also suggested that spouses were
affected in certain areas by their wives’ illness and distress. The spous¬
es of cancer patients showed a tendency toward more extreme depres-
sion scores in comparison with the community sample. Furthermore,

the correlations between wives’ and husbands’ distress and everyday
functioning scores were much higher in the cancer sample than in the
community sample, suggesting that husbands’ distress and functioning
are affected by their wives’ and vice versa. A previous work by the
authors (Ben-Zur et al., 2001) explored the effect on breast cancer
patients of husbands’ reactions and suggested that the opposite effect
may also be valid.
An important factor influencing spousal behavior appears to be the
reaction of the patient to the illness. In contrast, demographic variables
and illness attributes contributed little to spousal distress, and thus the
second hypothesis was confirmed only in part. These findings on the
strong associations between husbands’ and wives’ distress may be
understood in light of the dyadic processes inherent in gender, family
roles and distress. Barnett (1993) has described the general processes of
contagion and spillover between roles, and a crossover process
between spouses. The husband’s experiences at work, for example, can
lead to the wife experiencing stress at home. Similarly, a possible inter¬
pretation of the present research points to the patients’ distress as lead¬
ing to the spouses’ distress. Thus, following diagnosis and surgery, it is
the patient’s adjustment that becomes the major factor in spousal dis¬
tress rather than the objective stressful situation or the available per¬
sonal resources.
Illness variables in this study did not contribute to caregiver dis¬
tress, and the contribution of demographic variables was rare. Notably,
patient PSA was associated with education, place of birth and work sta¬
tus. Thus, employed patients (and employed husbands as well) report¬
ed better functioning. Employment may contribute to better
functioning of both patients and spouses in several ways: by helping
them focus on matters other than the threat of illness; ensuring their
income and thereby helping reduce distress in other life domains; and
providing support by colleagues at work. Higher education of patients
was also related to better functioning, suggesting that this variable may
be a resource to better patient understanding of the physicians’ termi¬
nology, medical instructions, and prognosis.
In summary, this study investigated the psychological and psy¬
chosocial adjustment to the illness of breast cancer patients and their
spouses in a relatively large sample. Each couple was interviewed indi¬
vidually. The research was conducted at a single point in time, thereby
precluding an assessment of change over time. The nature of the study

is correlational, so that the direction of the effects is only one of sever¬
al possibilities. The few associations between demographic variables
and distress, and the comparison with a community sample, clearly
point to the conclusion that the associations between the distress and
functioning of couples dealing with breast cancer are probably the
result of the effects of cancer on the patient, on the spouse, or both. The
conclusion, based on the model, is that spousal distress is affected by
patient distress. Although the distress of all the patients diagnosed with
breast cancer as a group was higher than that found for a normative
sample, for their husbands, or for the community sample, their per¬
sonal reactions differed and seemed to affect their husbands’ reactions
as well.
The findings of the study may also suggest several methodological
improvements in cancer research. Although spouses’ and patients’ dis¬
tress and functioning may not be affected in identical ways by the ill¬
ness, both parties function on a similar level in everyday tasks. The
results, therefore, suggest that several different outcome measures
should be used in cancer research, since the illness may have differen¬
tial effects on different outcomes. Furthermore, the use of a control
group, rarely found in studies investigating couples dealing with breast
cancer, is important, since it can suggest a differentiation between
processes common to all couples and those that are specific to cancer.
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DISTRESS OF SPOUSES OF
GYNECOLOGICAL CANCER PATIENTS
Introduction
Gynecological cancer is less common than breast cancer, with

80,000 new cases diagnosed annually in the United States (Auchincloss
& McCartney, 1998). The disease consists of a group of cancers of the
reproductive and sexual organs differentiated by site and differing in
frequency and disease factors. Cervical cancer, the most common of
these, has an effective screening test, and risk factors (e.g., unprotected
sexual intercourse and substance abuse) are known and preventable.
Uterine (endometrial) and ovarian cancers are less common. Uterine
cancer can be diagnosed relatively early and has a good prognosis.
Ovarian cancer is detected in advanced stages and the risk of recur¬
rence is greater. Rarer types of gynecological cancers are of the vulva,
vagina, and fallopian tubes. Vulvar cancer sometimes results in radical
vulvectomy but today efforts are made to preserve or reconstruct vul¬
var structures.
Women with gynecological cancer, as all cancer patients, face a
major stressful encounter, starting with the diagnosis, proceeding to
surgery in order to remove the tumor, certain parts of the reproductive
system, or both, such as the uterus, through treatment (chemotherapy
or radiation) and follow-up monitoring. The process itself is a source of
distress and may lead to symptoms of anxiety and depression. The
woman must cope with the threat of illness recurrence, the effects of
medical treatment, and feelings of isolation, stigma and guilt, as expe¬
rienced by cancer patients generally (Spencer et al., 1998).
108
Patient Reactions to Gynecological Cancers
Gynecological cancers lead to physical and physiological changes

that result in three main outcomes, depending on the specific cancer:
infertility (reproductive ability is damaged in the case of uterus or ovar¬
ian removal), sexual dysfunction, and early menopause (resulting from
changes in hormonal processes). Stigma, shame, and loneliness are par¬
ticularly characteristic of this type of cancer because of the patients’
social inhibition about discussing their experiences and feelings in rela¬
tion to the illness. Hormonal changes following the removal of ovaries
lead to menopausal symptoms and may cause additional stress, while
physical changes following radical surgery may affect other functions,
such as urinating or sitting for long periods.
These outcomes may engender distress and affect the adjustment of
gynecological cancer patients. Several studies have focused on the
adjustment to the illness by such patients both in the early stages of can¬
cer (e.g., Good & Capone, 1980; Harris et al., 1982; Andersen & Hack¬
er, 1983; Cain et al., 1983; O’Hoy and Tan, 1985), or in advanced
stages (Kornblith et al., 1995). Cochran et al. (1987), in a study of twen¬
ty-two endometrial cancer patients who had been diagnosed four and
one-half months to eight years previously and who underwent surgery,
found that three-fourths of the patients reported sexual difficulties, pri¬
marily pain during intercourse and decreased vaginal lubrication.
Roberts et al. (1992), studying distress and quality of life of thirty-two
cancer-free gynecologic patients one to nine years following surgery,
found high levels of distress (GSI) as measured by the SCL-90-R scores
(Derogatis & Coons, 1993), which were similar to those found for
breast cancer patients. Most patients, however, reported good quality
of life. In addition, distress level was highly negatively correlated with
age (r=-.64) but not with type of surgery (hysterectomy, vulvectomy,
or exenteration). In comparison, Corney et al. (1992), in a study of cer¬
vical and vulva cancer among 105 women six months to five years after
surgery, found high levels of anxiety and depression, although no asso¬
ciations were found with age or type of surgery. Reported sexual prob¬
lems, however, were related to anxiety.
Kornblith et al. (1995) investigated the physical problems and psy¬
chological distress of 151 women with ovarian cancer, most (86%) in an
advanced stage of the disease. The subjects were interviewed following
surgery or the start of treatment, and at three-month intervals thereafter
until twelve months post surgery/treatment. On entry, 33% of the

patients reported psychological distress scores equal to or greater than
the 1.5 standard deviations above the mean of a nationwide communi¬
ty sample. Impaired physical functioning was the most important pre¬
dictor of heightened psychological distress at baseline.
Certain demographic variables may be highly important in regard
to gynecological cancer. For example, the age factor is significant.
Young women may be more threatened than older women by death,
loss of fertility, loss of sexual desire or function, and reduced chances
of finding a partner. This last aspect highlights the importance of hav¬
ing a partner, as indicated in recent studies. Corney et al. (1992) found
that more women without partners could be classified as anxious than
women with partners. Similar findings were reported by Gilbar et al.
(1995), who compared married and unmarried patients by GSI scores.
Clearly, having a partner constitutes a supportive factor, although at
the same time the partner, too, must adjust to the illness, the threat of
death to his mate, and the illness derivatives. Gynecological cancer
presents fertility problems that are of concern for the husband, as well
as sexual dysfunctions that may harm intimate relationships and qual¬
ity of marital life.
Spousal Adjustment to Gynecological Cancer
Few studies have been published comparing husbands’ and wives’

adjustment to the illness (Gotay, 1984; Oberst &James, 1985; Cochran
et al., 1987). Gotay (1984), studying the problems and coping mecha¬
nisms of forty-two early-stage cervical cancer or precancer patients and
nineteen spouses, as well as thirty-one advanced-stage breast cancer or
gynecological cancer patients and twenty spouses, found that the pri¬
mary concern of the patients was the illness itself, while the spouses
were more worried by the possibility of their wives’ death than the
patients themselves. Cochran et al. (1987), studying the sexual adjust¬
ment of twenty-two endometrial cancer patients and fourteen spouses,
found a drop in frequency of sexual intercourse and level of satisfaction
as compared to levels before the onset of illness as reported by patients
and husbands. Husbands who were more positive toward their mar¬
riage were more satisfied with marital sexual relations.
The present study, focusing on gynecological cancer patients and

their spouses, compared spouses’ and patients’ distress and adjustment
to the illness and its association with demographic factors. The research
investigated similarities and differences in patterns of psychological dis¬
tress and psychosocial adjustment, focusing on the spouse’s adjustment
to the illness and the association of spousal distress and adjustment with
patient distress and adjustment according to the model presented in
Chapter 2. Following the model, these hypotheses were formulated,
parallel to those in the preceding breast cancer study:
1. Spousal distress and psychosocial functioning are related to patients’ distress

and functioning.
2. Demographic and illness attributes are related to distress and adjustment of
the spouses.
In addition, a path model was used to test the contributions of

demographic variables and the patient’s distress and adjustment to the
spouse’s distress and adjustment.
Method
Sample
Forty-four married gynecological cancer patients in follow-up treat¬

ment at two oncology clinics in northern Israel, and their spouses, took
part in the research. They were diagnosed during 1982-93, and at least
a year had passed since completion of treatment with no evidence of
disease recurrence. Of a total of fifty-six married patients who were
requested to participate, four refused to be interviewed, five could not
be interviewed owing to language barriers, and three did not wish their
spouses to be interviewed.
The spouses’ and patients’ demographic attributes are shown in
Table 4.10. Spouses were, on average, older than patients (A£=62.36,
range 28-81; and M=5S.25, range 22-81, respectively). Both had simi¬
lar levels of education (spouses M= 11.34, range 3-19; patients 44=11.40,
range 7-18). Most of the spouses and patients were born in Europe
(72.7% and 61.4%, respectively). Thirty-two percent of the patients and
44% of the spouses were employed during the interview period. The
Spouses and Patients
Demographic Variables Spouse Patient
Mean age in years {SD) 62.30 (12.79) 58.25 (12.31)

Mean level of education {SD) 12.34 (3.51) 11.40 (2.71)
Have children (%) V. '-v.
Yes 75 70.5
No 25 29.5
Yes 44 32
No 56 66
Place of Origin (%)
Israel 11.4 27.3
West Europe 13.6 9.1
East Europe 59.1 52.3
Unknown 2.2 —
n=A\
patients had ovarian (47.7%), endometrial (38.6%), or cervical (13.6%)

cancer.
Questionnaires and procedure
1. The Brief Symptom Inventory (BSI). The BSI (see Chapter 3) was used
to assess psychological distress (Derogatis & Melisaratos, 1983). Table
4.11 shows the means, SDs, and Cronbach alpha levels of the nine BSI
subscales and their total GSI for both spouses and patients. Most of the
spouses’ scores are higher than the wives’, with medium alpha levels for
both patients (range .21—.67) and spouses (range .31-69), and with high
alpha levels for both spouses’ GSI (.89 and .87, respectively).
2. Psychosocial Adjustment to Illness Scale (PAIS). The PAIS is a 45-item
scale developed by Derogatis (1975) to assess adjustment to medical ill¬
ness (see Chapter 3). Each item is composed of four statements scored on
a 4-point scale (0=noproblems, 3=many problems). The questionnaire cov¬
ers seven dimensions: health care orientation, vocational environment,
domestic environment, sexual relationship, extended family relation¬
ships, social environment, and psychological distress (see Table 4.12).
In scoring the PAIS, the ratings of items within each of the seven
domains are summed to give seven domain scores. Since the number
of items in each domain differs, the present study assessed both totals
Table 4.11. Means, Standard Deviations, and Alpha Levels of the BSI Subscales and Total
Scores for Spouses and Patients
Spouses Patients
BSI Subscales M SD a M SD a
Somatization .77 .38 .69 .77 .68 .50
Obsessive-compulsive .79 .44 .56 .59 .55 .52
Interpersonal sensitivity .66 .50 .67 .42 .59 .66
Depression .74 .41 .57 .45 .47 .52
Anxiety .79 .42 .61 .57 .55 .52
Hostility .71 .42 .31 .37 .37 .48
Phobic anxiety .66 .47 .44 .22 .33 .67
Paranoid ideation .75 .45 .48 .35 .42 .44
Psychoticism .53 .34 .55 .26 .44 .21
GSI .71 .30 .87 .47 .36 .89
rt=44; BSI=Brief Symptom Inventory; GSI=General Severity Index
TABLE 4.12. Means and Standard Deviations of the Psychosocial Adjustment to Illness Scale
(PAIS) for Spouses and Patients
Spouse Patient
Domain M SD M SD
Health care orientation 8.20 2.57 6.20 3.66
Vocational environment* 3.45 8.26 2.94 3.68
Domestic environment 3.04 5.08 3.81 3.79
Sexual relationship 5.46 3.81 4.72 4.50
Extended family relationships 1.59 6.15 0.50 1.15
Social environment 2.11 3.38 2.95 4.09
Psychological distress 4.63 2.94 5.20 3.94
n=44; * rc=22
and mean domain scores. Higher scores on the PAIS indicate poorer
adjustment (Derogatis & Lopez, 1983). The reliability of the total score
was available in the present study (a=.73 for patients and for spouses).
In the wives’ questionnaires, the items were phrased “your illness,” and
so forth. In the husband’s self-report, these sentences were rephrased as
“your wife’s illness” in order to determine the impact of the wife’s ill¬
ness on the husband’s functioning or emotions.
Although the PAIS is applicable to all sorts of illnesses, it has been
found to be a particularly reliable instrument for examining the psy¬
chosocial adjustment of cancer patients and their spouses to the illness
(Northouse & Swain, 1987; Baider & Kaplan De-Nour, 1988).
3. A Demographic and Medical Questionnaire covered age, education, place

of birth, employment and medical data.
Following both spouses’ agreement to be interviewed, the inter¬
views with both took place at the clinics before a scheduled appoint¬
ment with the physician.
Results
Comparisons and Correlations of Patients’ and Spouses’ Adjustment

Measures, and Testing the First Hypothesis
Table 4.13 presents the means of the patients’ and spouses’ T scores
for the nine BSI dimensions and the GSI distress scores. The spouses’
scores for reported distress were significantly higher than the patients’
in eight of the nine dimensions as well as in the total GSI. In addition,
the patients’ and spouses’ psychological distress measures, indicated by
anxiety, depression, psychoticism, and the GSI, were significantly pos¬
itively correlated. Figure 4.3 shows the patients’ and spouses’ BSI T
scores. Most patients’ scores are lower than the normative means for
most scales, while spouses’ scores are scattered around the normative
means. The positive correlations between three of the subscales (i.e.,
anxiety, depression and psychotism) as well as the GSI confirm the
first hypothesis for the distress measures.
Table 4.14 shows spouses’ and patients’ mean scores for the PAIS
subscales as well as the total score. No differences were observed
between spouses in any of the scales except health care orientation, in
which husbands reported more problems than their wives. The most
problematic areas for both husbands and wives are health care orien¬
tation and sexual relationships, and both spouses report relatively high
distress levels. The correlations between husbands’ and wives’ scores
are positive and significant for five of the seven scales as well as the
total score. These data confirm the first hypothesis for the psychosocial
adjustment scores.
As in the preceding breast cancer study, patients’ and spouses’ age
and education were highly correlated (r=.96 and .60, respectively). Par¬
tial correlation analyses for the GSI and PAIS, controlling age and edu¬
cation variables, showed positive significant partial correlations
between patients’ and spouses’ GSI (r=.47, /K.01) and PAIS (r= 33,
p<. 05).
Table 4.13. T Score Means, t-Values and Correlations Between Spouses and Patients
Pearson
BSI Subscales Spouses Patients /-test r
Somatization 52.66 51.63 0.48 -.14
Obsessive-compulsive 48.51 45.15 2.66** .23
Interpersonal sensitivity 50.42 45.57 3.21** .22
Depression 50.73 46.00 3.71*** .23
Anxiety 49.57 45.66 3.23**
Hostility 49.53 45.28 4.12*** .30*
Phobic anxiety 53.38 45.47 5.77*** .10
Paranoid ideation 47.79 42.83 4.84*** .20
Psychoticism 49.53 44.80 4.22*** .40**
GSI 50.25 45.18 5.44*** .43**
ra=44; * fx.05; ** fx.01; *** /K.001; BSI=Brief Symptom Inventory, GSI=General Severity
Index
Figure 4.3. YScore Means for Spouses and Patients for the Nine BSI Subscales and GSI
—o— Spouses
T score —•— Patients
n=44; SOM=Somatization; OC=Obsessive-Compulsive; IS=InterpersonaI Sensitivity;

DEP=Depression; ANX=Anxiety; HOS=Hostility; PA=Phobic Anxiety; PI=Paranoid
Ideation; PSY=Psychoticism; GSI=General Severity Index.
Table 4.15 shows the correlations between the spouses’ and patients’
distress scores (GSI) and the PAIS scales. The husbands’ PAIS scores
are not related to the patients’ or to their own GSI (except in the
domestic environment domain). In contrast, the wives’ PAIS scores are
highly related to their own distress levels and to spouses’ distress for the
Table 4.14. Means of PAIS Subscales of Spouses and Patients
Pearson
PAIS Domain Spouses Patients /-test r
Health care orientation 1.03 0.78 4.23** ■ 0.54***

Vocational environment-1" 0.58 0.49 0.60 0.06
Domestic environment 0.38 0.48 -0.96 0.31*
Sexual relationship 0.91 0.79 1.23 ^0.51**
Extended family relationships 0.40 0.13 1.13 -0.09
Social environment 0.35 0.49 -1.29 0.35*
Psychological distress 0.66 0.74 -0.94 0.35*
Total PAIS 0.62 0.57 0.59 0.29*
ra=44; +n= 17-22; */x.05, ** p<.01, *** /K.0001; PAIS=Psychosocial Adjustment to Illness
Scale
TABLE 4.15. Pearson Correlations between Distress Levels and PAIS Subscales Scores for
Spouses and Patients
Spousal Domain Spouse GSI Patient GSI

Health care orientation .04 .16
Vocational environment4" -.28 -.16
Domestic environment .01 .06
Sexual relationship .33* .19
Extended family relationships -.14 -.09
Social environment .10 .26
Psychological distress .27 .16
Total .01 .08
Patient Domain
Health care orientation .03 .37**
Vocational environment4" -.11 .16
Domestic environment .10 .42**
Sexual relationship .22 .40**
Extended family relationships .25 .09
Social environment .38** 71***
Psychological distress .31* .68***
Total .30* .69***
w=44; + k=17-22 */k.05; **/k.01; ***j!k.001; GSI=General Severity Index
total as well as for two of the subscales (extended family relationships

and social environment).
Testing the Second Hypothesis
Since country of origin included four categories (Israel, West

Europe, East Europe, and Asia/Africa), ANOVAs were conducted to
Table 4.16. Correlations Between Patient’s and Spouse’s Demographic Variables, Psycholog¬
ical Distress, and Psychosocial Adjustment
Spouse Patient
GSI PAIS GSI PAIS

Patient
Agep .07 -.12 .06 .07
Education*5 -.08 .14 -.35* -.37*
Work statuss .02 -.12 .12 .23
Has children5 .08 .13 .09 -.04
Spouse
Agep .07 -.03 .06 .12
Educationp .11 -.11
CO
Cn
*
-.41*
\
Work status5 .04 .19 .13 .36*
Has children5 .05 .03 .06 .06
w=44; * fK.05; ** /k.01; *** /K.001; P=Pearson; S=Spearman; GSI=General Severity Index;
PAIS=Psychosocial Adjustment to Illness Scale; Work status: 1 - yes, 2 - no. Has children:
1 - yes, 2 - no.
determine differences in BSI and PAIS scores as a function of origin.

The ANOVAs resulted in significant Fratios for patients in both meas¬
ures: 7^(3,40)=3.03, /K.05, and i<(3,40)=3.73, p<.02, with the latter
analysis alone showing differences between the Israel and East Europe
categories in a Scheffe test. No effects of this variable were found for
husbands’ distress or functioning, and it was not used, therefore, in the
regression analyses. In addition, no effects were found for type of diag¬
nosis or time since diagnosis, and neither of these variables was includ¬
ed in the regressions that followed.
As indicated in Table 4.16, few of the demographic variables were
correlated with psychological distress and psychosocial adjustment.
More significant, both patient’s and spouse’s education was related to
patient’s distress and adjustment. None of the R2 values reached signif¬
icant levels when multiple regressions were applied to GSI and PAIS,
using demographics as the independent variables. Thus, the second
hypothesis was confirmed for education only.
Testing the Model
The model presented in Chapter 2 suggests that the spouses’ dis¬

tress and functioning would be dependent on patients’ distress and
functioning as well as on demographic and illness attributes. In light of
the small number of patients and spouses, multiple regressions were

done separately for each demographic variable. Stepwise regressions
for all independent variables resulted in similar effects. In these regres¬
sions, the husbands’ GSI, total PAIS, or both were used as outcomes,
while patients’ GSI or PAIS, and either age, education, work, or hav¬
ing children, were used as independent variables. Figure 4 A shows that
spousal distress and psychosocial functioning are related to patient’s
levels of these outcomes, which, in turn, are related to patient’s educa¬
tional level.
Discussion
The present study of a sample of forty-four gynecological cancer

patients (cervical, ovarian, endometrial carcinoma) and their husbands
compared psychosocial adjustment (PAIS) and psychological distress
(BSI) levels. A major finding of the study is that the husbands reported
more symptoms of distress (interpersonal sensitivity, depression, anxi¬
ety, hostility, phobic anxiety, paranoid ideation, and psychoticism)
than the wives. This finding is surprising in light of the fact that most
couples were tested several years after diagnosis and treatment, and
presumably had resumed their normal lives by then, as indicated by
the BSI scores at around the normative level for the husbands and
below the norm for the wives.
The lower-than-normal levels for the wives suggests that the
patients may use denial or repression mechanisms in order to cope
with the perpetual threat of disease recurrence. More specifically, the
denial of affect (Breznitz, 1983) is viewed as a mechanism that helps
people in dealing with emotional reactions to threatening events. Such
a process may have beneficial effects on the patients, as for other life
events (Lazarus, 1983), because it allows them to continue in everyday
functioning and live a relatively normal life despite the threat of illness
recurrence.
The finding that the husbands rated higher than their wives on most
of the BSI scores, and that their data were closer to normative levels
suggests that they denied the fear of the illness and its possible out¬
comes less than their wives. This outcome may derive from differences
in information given to the husband about the patient’s prognosis com¬
pared to that given to the patient. Doctors tend to go into greater detail
about the prognosis with the spouse, especially when the prognosis is
FIGURE 4.4. Path Analyses of GSI and PSA of Spouses of Cancer Patients, Using Patients’
Attributes as Independent Variables
rt=44; /?2=adjusted scores; numbers near arrows represent standard beta coefficients;
GSI=General Severity Index; PAIS=Psychosocial Adjustment to Illness Scale.
poor. At such a point, the husband can no longer deny the inevitable
outcome of the illness, which may influence the severity of his psycho¬
logical symptoms. Another possible explanation for the relatively
greater distress among husbands (Cooper, 1984) is that although hus¬
band and wife are both in a stressful situation, the husband must play
a supportive role toward his wife, children, and other family members
during surgery, treatment, and the follow-up stage. It may be assumed
that his resources in coping with this cumulative stress will ultimately
be depleted.
The finding regarding psychosocial adjustment (PAIS) shows that
apart from health orientation, the area of sexual relations was per¬
ceived as the most problematic by both spouses. This result is support¬
ed by other studies (e.g., Cochran et al., 1987) and suggests that
although attitudes toward sexuality change during the life cycle (Ander¬
sen & Hacker, 1983), sexuality is considered important even after the
spouse experiences gynecological cancer.
An additional finding is the absence of significant differences

between wives and husbands in all domains of psychosocial adjustment
to illness (PAIS) except health care orientation. This contrasts with the
literature on the psychosocial adjustment of gynecological cancer
patients, which focuses on the prevalent sexual problems of the patients
(Good & Capone, 1980; Harris et al., 1982; Andersen & Hacker, 1983;
Andersen, 1984) arising partly from the hysterectomy surgical proce¬
dure and radiation treatments, and partly from fear of pain, fear of
bleeding, and feelings of loss of femininity (Harris et al., 1982). The
present findings, however, are similar to those of Cochran et al. (1987),
who, in interviews of twenty-two endometrial cancer patients and four¬
teen spouses, found no significant differences between husband and
wife in perceptions of sexual relations before and after treatment, even
though a significant decrease in frequency of satisfaction with sexual
relations was reported compared to levels before the illness.
An unexpected result of the study is that time elapsed since sur¬
gery, or type of cancer, were not significant factors in both spouses’
adjustment scores even though the subjects were interviewed over a
wide span of between one and ten years after surgery. As expected,
however, the most important factor in spousal distress was the patient’s
reactions and adjustment to having gynecological cancer. These find¬
ings on the associations between husbands’ and wives’ distress can be
understood in light of the dyadic processes in relation to gender, fami¬
ly roles, and distress, as discussed earlier, in the study on breast cancer.
Regarding demographic variables, age did not contribute to the dis¬
tress of either spouse. In contrast, education had a major effect, with
high level of education related to low level of distress. This result con¬
forms to the models developed by Lazarus and Folkman (1984) and
Moos and Schaefer (1993), suggesting that education is a resource that
helps people in their coping and adjustment to life stressors.
In summary, the most difficult aspects of the illness for the gyne¬
cological cancer patients and spouses in the sample were health orien¬
tation and sexual relations. These findings suggest that the adjustment
of cancer patients and their husbands is not uniform in all domains and
calls for intervention in specific areas. In addition, the husbands’ dis¬
tress was greater than their wives’, although both showed distress lev¬
els below the norms for most BSI subscales. These findings underscore
the need for the clinician to be aware of the psychological condition of
the husband. Often, all the attention is directed toward the patient,
while the spouse is neglected. As suggested by Baider and Kaplan De-

Nour (1988), the clinician must relate to couples and to whole families
in treating cancer patients, especially in the case of gynecological can¬
cer.
REFERENCES
Andersen, B.L. (1984). Psychological aspects of gynaecological cancer. In A.K.

Broome & L. Wallace (Eds.), Psychology and gynaecological problems (pp. 117-141).
New York: Tavistock/Routledge.
Andersen, B.L., & Hacker, N.F. (1983). Treatment for gynecologic cancer: A review
of the effects on female sexuality. Health Psychology, 2(2), 203-221.
Auchincloss, S.S., & McCartney, C.F. (1998). Gynecologic cancer. InJ.C. Holland
(Ed.), Psycho-Oncology (pp. 359-370). New York: Oxford University Press.
Baider, L., & Kaplan De-Nour, A. (1988). Breast cancer-A family affair. In C.L.
Cooper (Ed.), Stress and breast cancer (pp. 155-170). New York: Wiley.
Breznitz, S. (1983). The seven kinds of denial. In S. Breznitz (Ed.), The denial of stress
(pp. 257-280). New York: International Universities Press.
Cain, E.N., Kohom, E., Quinlan, D.M., Schwarts, P.E., Latimer, K., & Rogers, L.
(1983). Psychosocial reactions to the diagnosis of gynecologic cancer. Obstetrics &
Gynecology, 62(5), 635-641.
Cochran, S.D., Hacker, N.F., Wellisch, D.K., & Berek, J.S. (1987). Sexual functioning
after treatment for endometrial cancer.Journal of Psychosocial Oncology, 5(2), 47-61.
Cooper, E.T. (1984). A pilot study on the effects of the diagnosis of lung cancer on
family relationships. Cancer Nursing 7(4), 301-302.
Corney, R.H., Everett, H., Howells, A., & Crowther, M.E. (1992). Psychosocial
adjustment following major gynaecological surgery for carcinoma of the cervix
and vulva. Journal of Psychosomatic Research, 36(6), 561-568.
Derogatis, L.R. (1975). Psychosocial adjustment to illness. Baltimore: Scale Clinical Psy¬
chometric Research.
Derogatis, L.R., & Coons, H.L. (1993). Self-report measures of stress. In L. Gold-
berger & S. Breznitz (Eds.), Handbook of stress: Theoretical and clinical aspects (2nd
ed., pp. 200-233). New York: Free Press.
Administration, Scoring and Procedures Manual-! Baltimore: Clinical Research.
Gilbar, O., Steiner, M., & Atad,J. (1995). Adjustment of married couples and unmar¬
ried women to gynaecological cancer. Psycho-Oncology, 4, 203-211.
Good, R.S., & Capone, M.A. (1980). Emotional consideration in the care of the gyne¬
cologic cancer patient. In D.D. Youngs & A.A. Erhardt (Eds.), Psychosomatic obstet¬
rics & gynecology (pp. 117-125). New York: Appleton-Century-Crofts.
Gotay, C.C. (1984). The experience of cancer during early and advanced stages: The
views of patients and their mates. Social Science and Medicine, 18(7), 605-613.
Harris, R., Good, R.S., & Pollack, L. (1982). Sexual behavior of gynecologic cancer
patients. Archives of Sexual Behavior, 77(6), 503-510.
Kornblith, A.B., Thaler, H.T., Wong, G., Vlamis, V., Lepore, J.M., Loseth, D.B.,
Hakes, T., Hoskins, WJ., & Portenoy, R.K. (1995). Quality of life of women with
ovarian cancer. Gynecologic Oncology, 59(2), 231-242.
Lazarus, R.S. (1983). The costs and benefits of denial. In S. Breznitz (Ed.), The denial
of stress (pp. 1-30). New York: International Universities Press.
Northouse, L., & Swain, M.A. (1987). Adjustment of patients and husbands to the ini¬
tial impact of breast cancer. Nursing Research, 36(A), 221-225.
Oberst, M.T., &James, R.H. (1985). Going home: Patient and spouse adjustment fol¬
lowing cancer surgery. Top Clinical Nursing 7, 46-57.
O’Hoy, K.M., & Tan, G.W.K. (1985). Sexual function following treatment for carci¬
noma of the cervix. Journal of Psychosomatic Obstetrics and Gynaecology, 4, 51-58.
Roberts, C.S., Rossetti, K., Cone, D., & Cavanagh, D. (1992). Psychosocial impact of
gynecologic cancer: A descriptive study. Journal of Psychosocial Oncology, 10(1),
99-109.
DISTRESS OF SPOUSES OF ELDERLY
CANCER PATIENTS
Introduction
Cancer, which is a disease of the elderly, has become a major geri¬

atric concern in light of the steady increase in the older population dur¬
ing the twentieth century (Ferrell & Ferrell, 1998). This population
growth is taking place in both Western and Eastern societies. In the
United States, the over-sixty-five age group comprised 12.7% of the
population in 1992; there were an estimated 30 million people sixty-
five-plus in the United States in 1999, and the growth of this sector was
estimated at 73% between 2010 and 2030.
The process of aging is a stressful experience due to the incessant
confrontation with new internal and external demands (Gilbar et al., in
press). These include changes in daily activity arising from health prob¬
lems, retirement, and shifts in economic conditions and social status;
and the distancing of children, loss of a spouse, and the loss of close
friends, which lead to changes in both tangible and emotional support.
Health problems are by far the most prominent element for the
older population. The frequency of physical limitations and functional
impairments affecting their daily lives is greater than for younger peo¬
ple. They also have higher rates of psychiatric disorders, especially
clinical depressive symptoms, as compared to younger people (Fiske et
al., 1998). Most significant, 50% of all cancer patients are in the sixty-
five-plus age group (Keintz et al., 1988), which suggests that cancer
occurrence in the elderly and its psychosocial effects should be assessed
in the broader context of geriatric physical and emotional problems.
Most research on the functioning of elderly cancer patients com¬
pares their reduced functional abilities to that of younger patients. Con-
123
ceivably, the stress and burden of the disease process, added to the
existing problems of the elderly, would lead to additional functional
and emotional difficulties. Curiously, however, in spite of this aggrega¬
tion of stressors, studies indicate better adjustment and less distress in
elderly cancer patients than in younger ones (Plumb & Holland, 1981;
Ganz et al., 1985; Holland & Maissie, 1987; Maisiak et al., 1989). Later
studies (Paraskevaidis et ah, 1993; Mor et ah, 1994; Harrison &
Maguire, 1995; Compas et ah, 1999) confirm the earlier findings that
older people with cancer, whether newly diagnosed or advanced, expe¬
rience fewer negative psychosocial symptoms than their younger coun¬
terparts.
These findings may be related to the greater emphasis on physical
appearance and physical health in the young. Surgery in younger peo¬
ple may lead to problems related to body image, sexual relationships,
and the ability to have children (see preceding study on gynecological
cancer). Treatment may also engender changes in the body (e.g., loss of
hair or weight gain), which can exacerbate psychological distress, espe¬
cially among young women.
Problems relating to old age, however, may exacerbate the distress
of the caregiver to the elderly cancer patient, especially when the care¬
giver is the spouse who is of a similar age as the patient and faces sim¬
ilar age-related demands. The present research focuses on distress and
burden among spouses of cancer patients in old age.
Burden and Caregiving to Cancer Patients
The term burden was used by Zarit et al. (1986) to denote the care¬
giver’s perception of the degree that the caregiving is injurious to the
caregiver’s health and socioeconomic status (see Gilbar, 1994). Such
perceptions are viewed as caregiver appraisals of the stressors that char¬
acterize the caregiving role (Patrick & Hayden, 1999). Thus, burden
represents the perceptions of anxiety, distress, and demoralization that
result from caregiving (Lawton et al., 1991) and is considered an impor¬
tant factor in the distress/well-being of caregivers.
As described in the preceding chapters, diagnosis, surgery and
adjuvant treatment evoke distress and disturbing emotional reactions in
cancer patients and their families. However, while research has been
devoted to the investigation of patient and family reactions to cancer,
only a limited number of studies have explored the burden involved in
caregiving in this context. Several factors have been found to con¬

tribute to the pressure or burden of spouse caregivers of cancer
patients: medical variables, including the site of the malignancy, dura¬
tion of the illness (Cassileth et al., 1985; Oberst et al., 1989), and sever¬
ity and prognosis of the illness (Wellisch et ah, 1983); demographic
variables, such as age, gender, and social and financial standing
(Wellisch et ah, 1983; Mor et ah, 1987); and the psychological distress
of the patient (Baider & Kaplan De-Nour, 1984; Northouse, 1984).
Since cancer in old age occurs at a time when both spouses have age-
related problems, caregiver burden in old age may be greater than, or
different from, that of the younger caregiver. Mor et ah (1987) found
that younger spouse caregivers contend with more financial problems
than older spouses in this situation, while older spouses cannot carry
the physical burden of caregiving as well as younger persons.
Burden, Caregiving, and the Elderly
The sixty-five-plus age group, which includes 50% of all cancer

patients, has greater difficulty coping with and recovering from surgery
and therapies, making the burden of caregiving heavier. Spouses, as
well as adult offspring, may display such responses to these crisis situ¬
ations as depression, stress, weight loss, and illness (McCubbin & Pat¬
terson, 1982; Biegel et ah, 1991).
Research on the burden of caregiving to the elderly focuses mainly
on aged psychiatric patients (Gilhooly, 1984) or patients with
Alzheimer’s disease who are severely handicapped physically and
require intensive caregiving (Fengler & Goodrich, 1979). Within this
context, the disparity of findings on predicting the level of spouse care¬
giver burden is notable, whether the predictors are medical and demo¬
graphic variables, distress of the patient, or assessments by the
caregiver personally (Johnson, 1983; Hasselkus, 1988). Zarit et ah
(1986) contend that the severity of the patient’s symptoms does not
necessarily affect the caregiver’s sense of burden. Others suggest that
the capability of the caregiver to measure up to the burden can even
improve over time despite deterioration in the patient’s condition
(Gilhooly, 1984).
Barusch and Spaid (1989) found that women tend to report a high¬
er level of burden than men. Women scored higher on level of burden
and concern, and lower on morale. They were also more depressed.
These differences, observed predominantly in the early stages of care¬

giving, become less marked over time as the woman learns to distance
herself emotionally and adopt methods of active coping (Zarit et al.,
1986). Another difference between male and female caregivers is their
respective approaches to the caregiving task. Men tend to regard the
burden as objective, instrumental, and practical, while women take a
more subjective approach, focusing mainly on the change in the rela¬
tionship with the husband due to the progressively incapacitating effect
of the disease (Gilhooly, 1984; Hasselkus, 1988).
Many studies indicate that low caregiver morale is likely to be
affected by the low morale of the patient (Johnson, 1983; Gilhooly,
1984; Poulshock & Deimling, 1984; Hasselkus, 1988). A study of bur¬
den of caregivers to psychiatric elderly patients (Pearson et al., 1988)
showed that patients’ disruptive behavior and functional limitations
related to level of caregiver burden. Few studies, however, have
focused on distress and burden of elderly caregivers to cancer patients.
No research has been carried out to investigate the burden of care¬

giving to the elderly cancer patient in the early stages of the disease as
perceived by both the spouse and the patient. The present study aims
to assess levels of burden and distress experienced by older spouses
and cancer patients. It explores similarities and differences in patterns
of burden of spouses and patients, focusing on the spouse’s adjustment
to the illness. It also tests the impact on distress of age, gender, and
health status variables. The hypothesis was that spouses’ distress would be
related to patients’ distress. In addition, the contribution of demographic
burden and health variables to spouses’ distress is tested in conformity
with the model presented in Chapter 2.
Method
Sample
The participants in the research were cancer patients and their

spouse caregivers, all of whom were aged 60-85. All had children. The
patients were being treated at an oncological center in northern Israel
and had been diagnosed during November 1993-February 1994 and
November 1994-February 1995. They were interviewed two to three

months after diagnosis. All resided in an urban environment. Of a total
of seventy-one patients diagnosed during the periods indicated, three
refused to be interviewed, four had died, and four had left the country.
The final sample, therefore, consisted of sixty couples. Table 4.17 shows
that of the sixty caregivers, 35% were men, mean age 71.1, and most
were born in Europe (80%). The patient sample consisted of 65% men,
with mean age 72.5, most born in Europe (83.4%). None of the patients
had metastases. Cancer types according to site and type of treatment
are also shown in Table 4.17.
Questionnaires and Procedure
Patients and spouses completed the self-report questionnaires (see

Chapter 3) separately at home, supervised by social work students.
Each interview took one to one-and-one-half hours. The first two ques¬
tionnaires had been translated from English to Hebrew for previous
studies carried out by one of the authors (Gilbar, 1994, 1997; Gilbar et
al, 1995).
1. Caregiver Level of Burden Scale. This 29-item self-report inventory
(Zarit et al., 1980) was used to assess degree of caregiver burden. The
questions, composed on the basis of clinical experience with caregivers,
cover the caregiver’s health, psychological well-being, finances, social
life, and relationship with the impaired person. Each item is composed
of five statements scored on a 5-point scale ranging from 1 [no difficul¬
ties) to 5 [many difficulties). Four items scored in the opposite direction
were subtracted from the total. Internal consistency (Cronbach’s alpha)
of the Hebrew format is .86. The reliability data in the present research
were a=.83 and .80 for patients and spouses, respectively (see Table
4.18).
2. Instrumental Activities of Daily Living (IADL). This inventory (Law-
ton, 1971) records the number of specific tasks that the caregiver per¬
forms for the patient. An index of caregiving tasks is constructed that
includes subscales of ADL tasks in the areas of communication, money
management, food preparation, home maintenance, and medication.
Each task is further broken down into four activities (e.g., communica¬
tion activities, such as finding a number in the phonebook, dialing a
TABLE 4.17. Means, Standard Deviations, and Percentages of Background and Illness Vari¬
ables of Spouses and Patients
Spouses Patients
Background Variables
Mean age in years {SD) 71.13 (6.31) 72.50 (5.60)
Self-rated health {SD) 2.58 (0.94) 2.71 (0.97)
Gender (%)
Male 35 65
Female 65 35
Country of origin (%)
Israel 6.7 8.3
Asia/Africa 6.7 6.7
Other 6.7 1.7
Illness variables
Site of cancer (%)
Colon 18.2
Gynecological 12.7
Kidney/bladder 16.4
Sarcoma 16.4
Prostate 10.9
Lung 7.3
Breast 18.2
Treatment (%)
Follow-up monitoring 40
Chemotherapy 20
Radiation 40
rc=60
Table 4.18. Means, Standard Deviations, and Alpha Levels for Spouses’ and Patients’ Mea¬
sures
Spouses Patients
Pearson Number of
M SD a M SD a r couples
Burden 2.49 0.48 .80 2.37 0.53 .83 .51* 60
GSI 0.87 0.62 .95 0.90 0.75 .95 .70* 29
IADL 1.57 0.68 .85 29
*P<-001; GSI=General Severity Index; IADL=Instrumental Activities of Daily Living
number, etc.). Only twenty-nine spouses completed the scale in the

present research. Internal consistency (Cronbach’s alpha) of the
Hebrew format is .91, and oc=.85 in the present research.
3. Brief Symptom Inventory (BSI). The BSI (Derogatis & Melisaratos,

1983) was used to assess the psychological distress of the patients and
the spouse caregivers. In the present study, BSI scores were available
for only a subsample of twenty-nine couples, with a=.95 for the forty-
nine items. The results of this outcome, therefore, must be viewed as
preliminary. Only the total score (GSI) was analyzed.
4. Demographic and Medical Questionnaire. This covered age, educa¬
tion, and place of birth; health self-ratings by patients and spouses
(1—very good; 5=very bad)\ and medical information taken from the
patients’ records.
Results
Burden and Personal Attributes of Spouse Caregivers and

Patients for the Whole Sample
Table 4.19 shows the associations between patients’ and spouses’

personal characteristics and burden for sixty couples. The spouses’ gen¬
der is the only variable associated with spouses’ burden, with women
reporting lower levels of burden than men. For the patients, gender,
age, and perceived health were all associated with spousal burden,
while advanced age and better health related to lower burden.
Testing the Hypothesis
The spouses’ rating of caregiving burden for the patients was some¬
what more severe than the patients’ self-rated burden (see Table 4.18)
but the difference was only marginally significant (/K.06). No differ¬
ences between spouses were observed for the GSI score or the BSI
subscales. Table 4.20 shows the associations between spouses’ attrib¬
utes, their assessments of distress (GSI) and burden, and spouses’
IADL for twenty-nine couples. The table shows high positive correla¬
tions between the spouses’ and patients’ GSI, confirming the hypothe¬
sis. The spouses’ GSI scores are also highly related to burden, IADL,
and perceived health.
In light of the small number of couples, stepwise regressions were
used. Regression analyses were applied to the patients’ and spouses’
GSI scores, using their assessments of burden and personal demo-
Table 4.19. Correlations between Spouses’ and Patients’ Burden and Background
Variables
Spouses’ Burden Patients’ Burden
Spouses’ Background Variables

Gender55 -.32* -.28*
Agep -.07 -.24
Perceived health1* -.02 .20
Patients’ background variables

Gender5 .28* .24
Agep -.31* -.29*
Perceived healthp .26* .23
re=60; * {K.05; P=Pearson; S=Spearman
Table 4.20. Correlations between Spouses’ and Patients’ Attributes, IADL, GSI, and
Burden
Spouses ( n= 29) Patients (n=29)
IADL GSI Burden GSI Burden
Spouses’ Attributes
GSIP .53**
Burdenp .40* .43*
Gender55 -.37* -.18 -.40** -.20 -.30
Agep .20 .16 -.02 .18 -.19
Perceived healthp .15 .44** -.12 .43* .25
Patients’ Attributes
7Q***
GSIP .50** .34
Burdenp .21 .58*** .49** .42*
Gender s .29 .25 .33* .33* .24
Agep -.12 .07 -.53** .03 -.21
Perceived healthp .43* .45* .23 .69*** .20
*/<■ 05; **/K.01; *** /K.0001; P=Pearson; S=Spearman; GSI=General Severity Index;
IADL=Instrumental Activities of Daily Living
graphic characteristics as independent variables. For patients, the mul¬

tiple R2 was .56 (i<[2,26]=16.10, /K.0001), with burden ((3= 29, /K.05)
and health (|3=.64, /K.0001) the significant factors. For spouses, the
multiple R2 was .52 (^[3,25]=9.01, /K.001), with burden, health, and
IADL the significant factors (|3=.35, .44, and .33, respectively, /K.05).
When spouses’ GSI scores were regressed on all these variables,
including patients’ GSI, this last factor (GSI) was a strong predictor of
spouses’ distress: R2=.59 (7^2,26]=18.48, /K.0001; [3=44, /K.001).
Patients’ burden was also a significant predictor ([3=35, /K.05).
Discussion
The study focused on cancer in older age and spouse caregiver

burden in this situation. Overall, patients and spouses did not differ in
their perceived burden or in psychological distress levels. The results
relating to distress, although preliminary in view of the small sample,
suggest that psychological distress in older spouses depends on such
variables as perceived burden and health of both patients and spouses,
as well as on extent of instrumental activities performed for the
patients. This would seem to support the view that cancer in old age
occurs at a time of decreased physical resources, when both patients
and spouses need more of these resources in order to cope with the ill¬
ness. The findings in relation to spouses’ correlations of distress repli¬
cate those found in the earlier studies reported here and attest to the
strong influence of patient distress on caregiver distress. In the regres¬
sion analysis, patient distress was the strongest predictor of caregiver
distress as well as patient burden.
Of personal caregiver attributes, gender was mainly related to per¬
ception of burden, with women reporting less burden than men. Gen¬
der, therefore, must be viewed as a distinctive variable that may affect
burden in healthy elderly caregivers. Notably, since caregivers’ and
patients’ gender are complementary (male caregivers have female
spouses, and vice versa), this outcome may also signify that male
patients are less of a burden than female patients.
These findings differ from an earlier study by Leiber et al. (1976),
which found that husband caregivers showed less depression than wife
caregivers. They also differ from research by Stetz (1987), who found
that wife caregivers perceived more caregiving demands of them than
did husbands. In comparing the present findings to studies of gender
differences in caregivers of the cognitively impaired elderly popula¬
tion, the findings differ from the meta-analysis of gender differences by
Miller and Cafasso (1992), who reported no significant gender differ¬
ences in the area of total caregiver involvement in care or in money
management tasks but greater burden perceived by wife caregivers.
The present findings also differ from those of the gender study by Bar-
usch and Spaid (1989) based on 131 caregivers. They, too, found that
wife caregivers tended to report a higher level of burden than husband
caregivers.
The conflicting outcomes relating to perception of burden may be

explained by the caregiver model described in the literature (Zarit et
al., 1980), which points to differences in burden that result from role
strain as distinct from emotional strain. Emotional strain may be
induced not only by the illness but also by the alteration of household
roles, a problem that becomes more significant in the case of elderly
caregivers of cancer patients in the initial stage. Changes in role begin
immediately after surgery, in contrast to gradual changes that develop
in cases of cognitive impairment. The caregiver of a cancer patient has
no opportunity to get used to these changes. Moreover, clinical expe¬
rience shows that elderly men and women have more difficulty
expressing the painful emotions that arise from a diagnosis of cancer
(namely the fear of dependency as a result of the medical treatments,
and the fear of losing each other) as compared to younger adults.
Another relevant factor is that most (70%) of the patients and their care¬
givers in the present study were born in Europe. Traditional
gender-related social roles and responsibilities dictated that men are to
be perceived as aggressive and instrumental, and women as passive,
relationship oriented, and emotional (Cross & Markus, 1993). The dif¬
ficulty involved in role strain, by contrast, is easier and perhaps more
legitimate for male spouses of cancer patients to discuss, as, tradition¬
ally, caregiving responsibilities within the family have been identified
as appropriate to women (Walker et al., 1989; Walker & Pratt, 1991).
Another possible explanation for the differences in perception of
burden between elderly caregiver husbands and wives may lie in their
respective use of family and social support resources. According to
stress theory (Cohen & Lazarus, 1979), this variable can contribute to
improved coping with the stress situation arising from the illness-the
utilization of support resources may reduce burden. The clinician
encounters more men than women spouses, especially in the elderly
population, who refuse to accept help from family members, such as
adult children, brothers or sisters, or from formal support systems. This
is probably related to the gender-role stereotype, namely that a man
must manage by himself for reasons of self-esteem. However, lack of
sufficient data on the issue of utilizing agents of support dictates caution
in adopting the conclusion that gender differences exist in the utiliza¬
tion of both informal and formal social support systems.
Perhaps the most persuasive explanation for the high level of bur¬
den perceived by the husband caregiver of the cancer patient, along
with a similar level of psychological distress perceived by both sexes,

may rely on the stress paradigm developed by House et al. (1988): lev¬
els of stressors and resources influence caregiver distress outcomes.
Caregiving stressors include the level and type of spouse impairment
and the level of caregiver involvement. Resources include informal and
formal support and the caregiver’s psychological state. In the initial
stage of coping with cancer, the patient and the spouse are in a state of
shock and do not seek practical help, as they cannot envision the out¬
comes of medical treatment. The husband caregiver, being unused to
the sudden new caregiving role, feels greater burden than the wife care¬
giver. Even though the elderly deal with the nearness of death at this
stage of their lives, the menace of a cancer diagnosis—the threat of the
ravages of the illness and the medical treatments involved is universal
and is unlikely to be affected by gender, as borne out by the similar
level of psychological distress of both sexes.
The results of this study also show that both spouses’ health reports
related positively to their distress levels and minimally to burden. The
indication that the health status of the spouses is consistently related to
their distress suggests that even among the elderly, significant differ¬
ences in health status may have implications for distress. By contrast,
age, surprisingly, was negatively correlated with burden. Specifically,
spouses of older patients reported less burden. This finding, however,
may be somewhat confounded with gender (the older patients in the
study were mostly males) and should be investigated further in future
research.
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tectomy. InternationalJournal of Psychiatry in Medicine, 74(3), 265-276.
Barusch, A.S., & Spaid, W.M. (1989). Gender differences in caregiving: Why do wives
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Chapter 5
PRIMARY CAREGIVER COPING WITH

BREAST CANCER
INTRODUCTION
E ven though cancer is acknowledged to be a family affair and not

the patient’s problem alone (Baider & Kaplan De-Nour, 1988;
Lewis, 1990), creating a stressful situation for the entire family and
affecting each family member (see discussion in Chapter 2), little
research has been carried out on the coping strategies of spouses of
breast cancer patients.
The authors’ study presented in this chapter focuses on both spous¬
es and breast cancer patients, assessing spouses’ coping and percep¬
tions of their wives’ coping, as well as their own distress and
psychosocial adjustment to the illness. The theoretical rationale is
based on the cognitive model of stress and coping (e.g., Lazarus &
Folkman, 1984; Lazarus, 1999), which holds that people’s feelings,
thoughts, and actions during stressful encounters depend on their
appraisals of the situation. In the primary appraisal, the stressful situa¬
tion is perceived as a loss, a threat, or a challenge. Cancer is considered
to be a life-threatening illness that leads to distress in both patients and
families (e.g., Hoskins, 1995), with adaptation remaining a long-term
problem for both (Spencer et al., 1998). The illness becomes a source
of potential harm in the personal, work, interpersonal, and sexuality
domains (Osowiecki & Compas, 1998). Illness appraisals, however,
may depend on such factors as illness stage and development, surgery
and treatment outcomes, and demographic and personal attributes. In
the secondary appraisal, people dealing with illness contemplate what
137
they can do in order to solve the problem, remove the threat, or correct
the loss, based on assessments of resources available and personal
capability to cope (Spencer et al., 1998). Thus, personal and social
resources, and the utilization of specific strategies or methods of coping
are considered to be important in the adaptation to the illness (e.g.,
Spencer et al., 1998; Epping-Jordan et al., 1999).
Coping strategies represent behavioral and cognitive efforts to deal
with stressful encounters (e.g., Lazarus & Folkman, 1984; Terry, 1994).
Lazarus and Folkman (1984) classified coping strategies as either prob¬
lem focused or emotion focused, thereby delineating the function of
coping as dealing with the problem or with its emotional and physio¬
logical outcomes, respectively. In subsequent studies (Carver et al.,
1989) coping strategies were divided according to outcome in terms of
their functional or adaptive value. Effective coping strategies, accord¬
ing to Zeidner and Saklofske (1996), consist of efforts to eliminate the
stressor, reduce physiological arousal and psychological distress, main¬
tain social functioning, and preserve a sense of well-being. Other
research has shown problem-focused coping to be more effective than
emotion-focused coping in terms of minimizing negative emotional
reactions and improving performance levels (Zeidner & Ben-Zur, 1994;
Zeidner, 1995; Ben-Zur, 1999).
Coping and Adjustment to Cancer
Certain research efforts have been devoted to the link between per¬
sonal and spousal coping and support, and the patient’s or caregiver’s
adjustment to cancer. Spencer et al. (1998) suggest that factors such as
using emotional and informational support and having a fighting spir¬
it and a positive attitude lead to better cancer patient adjustment. Con¬
versely, psychological problems have been shown to be greater when
the patients’ coping responses involve fatalism, displacement, or pro¬
jection (Everson et al., 1996). Carver and Scheier (1993) found the
strategies of both vigilance or avoidance to be detrimental to the
patients’ well-being and rehabilitation. In general, the use of avoidance
coping strategies is associated with poorer adjustment, while active
coping strategies are associated with better adjustment (Friedman et al.,
1990; Dunkel-Schetter et al., 1992; Osowiecki & Compas, 1998).
Recent studies in the context of breast cancer have shown that cop¬
ing strategies are differentially associated with distress (Osowiecki &
Primary Caregiver Coping with Breast Cancer 139
Compas, 1999). Epping-Jordan et al. (1999), testing problem- and emo¬

tion-focused engagement coping (i.e., directed toward the stressor or
toward one’s emotions) and disengagement coping (i.e., directed away
from the stressor or one’s emotions) in a sample of eighty breast cancer
patients at diagnosis and at six months thereafter, found that problem-
focused engagement coping predicted low levels of anxiety/depression
symptoms, while emotion-focused disengagement coping predicted
high levels of these symptoms. Similarly, in a study focusing on coping
with chemotherapy for breast cancer (Manne et al., 1994), escape-
avoidance coping was positively related to more severe physical symp¬
toms and negative affect.
More significant, appropriate adjustment to cancer is dependent on
the totality of the cognitive, emotional, and behavioral responses to the
diagnosis by the patients and their significant others. Manne (1994)
suggests that spouses are the primary source for support in the case of
married individuals, with patients citing spouses as the main emotion¬
al-support resource. Nevertheless, spouses and significant others may
sometimes react in negative, nonsupportive ways, and patients who
perceive higher levels of critical or avoidant responses by spouses
report greater psychological distress and lower levels of well-being
(Manne, 1999).
In the case of breast cancer, the spouse’s vulnerability is height¬
ened, since he finds himself in a double, and conflictive, role: as the pri¬
mary supporter, he must assume new roles in the household (Spencer
et al., 1998) and provide tangible as well as emotional support, while at
the same time coping with the distress emanating from the significance
of his wife’s diagnosis in terms of her suffering and the threat to her life
(Keller et al., 1996). Curiously, few studies have been devoted to the
association between the coping strategies of both spouses and adjust¬
ment to breast cancer, although spouse and dyad coping strategies
have been recognized as mechanisms in the reduction of stress in the
context of a wide range of diseases, including multiple sclerosis (Pak-
enham, 1998) and myocardial infarction (Coyne & Smith, 1991; Ben¬
nett & Connell, 1999).
A study testing seventy-eight breast cancer patients and their sig¬
nificant others (Lichtman et al., 1987) two to sixty months after surgery
showed that the husbands’ ratings of their own coping did not relate to
marital adjustment, although the interviewer’s ratings of husbands’
positive reactions to cancer was correlated with marital adjustment.
An analysis of interview data of twenty-two breast cancer patients and

their husbands a year following diagnosis (Hannum et al., 1991) indi¬
cated that the husbands’ self-reports of coping strategies were mini¬
mally related to their distress, yet the husbands’ observed (by the
interviewer) confronting behavior was negatively related to psycho¬
logical distress as measured by the SCL-90-R (Derogati's & Savitz,
1999).
A retrospective study (Ptacek et al., 1994) assessing thirty-six former
breast cancer patients and their spouses showed that the patients’ cop¬
ing strategies were more extensive and varied than their spouses’. The
spouses’ coping strategies were related to their own well-being and to
marital satisfaction. Moreover, the state of the patients’ mental health
was not correlated with the spouses’ coping. The results suggest that the
distress of breast cancer patients is not affected by their spouses’ cop¬
ing strategies. These results, however, are not compatible with most of
the extant research, which shows that the partner is an important social
resource for the adjustment of the patient (e.g., Baider & Kaplan De-
Nour, 1988; Manne, 1994; Bolger et al., 1996; Spencer et al., 1998). If
the spouse’s distress level is high, and if he uses less efficient coping
strategies, he is likely to be of less support for his ill wife.
During stressful encounters, people draw on a variety of resources
to aid them in the coping and adjustment process. Lazarus and Folk-
man (1984) and Moos and Schaefer (1993) refer to external resources
such as finances and social support, and internal resources such as intel¬
ligence, energy, and personality disposition. While financial resources,
together with skilled medical personnel, are important in the medical
context, special emphasis has been placed in the literature on social
resources, such as patients’ social support from partners (Bloom &
Spiegel, 1984), or personal resources, such as optimism (Spencer et al.,
1998; Epping-Jordan et al., 1999) or perceived control (Osowiecki &
Compas, 1998). Spouses’ expressed love and understanding have been
documented as contributing to the recovery of the patient (see Gilbar
et al., 1995), while spouses’ avoidance and criticism have been linked
to patient distress (Manne, 1999). A special kind of resource in regard
to coping with illness may be found in the spouses’ perceptions of each
other’s coping strategies.
Spouses’ Perceptions of Other-Coping and Outcomes
Ptacek and Dodge (1995), investigating spouses’ reports of self-cop¬

ing and other-coping in everyday life, found that high levels of per¬
ceived emotion-focused coping of the spouse (e.g., ventilation,
behavioral disengagement) showed negative correlations with relation¬
ship satisfaction, while perceived problem-focused coping of the
spouse (e.g., planning) showed positive correlations with such satisfac¬
tion. This finding conforms with the model developed by Carver et al.
(1989), which regards high levels of emotion-focused coping as less use¬
ful. Lev-Wiesel (1998), investigating the effect of perceptions of spous¬
es’ coping ability with stressful life events on marital quality, found a
positive association between marital quality and a higher rating of the
partner’s coping ability among wives only.
Few studies have examined the mutually perceived coping of
spouses in relation to distress in the domain of breast cancer, or cancer
in general. Of these, Lichtman et al. (1987) reported that the husband’s
rating of the effectiveness of his wife’s coping was related to his marital
satisfaction, while the wife’s rating of her husband’s supportiveness was
correlated with the couple’s marital adjustment. Hannum et al. (1991)
showed that the husband’s report of the wife’s coping was related to her
distress. Ptacek et al. (1994) found that breast cancer patients’ reports of
their husbands’ problem-focusing and support-seeking strategies were
positively related to the wife’s satisfaction with the marriage, but no
significant associations were found with the wife’s mental health (i.e.,
anxiety and depression). Husbands’ satisfaction and mental health
were negatively related to their perceptions of their wives’ use of avoid¬
ance, while perceiving their wives as using problem-focused coping
showed positive associations with their own satisfaction with the mar¬
riage. This study is the only one using a multistrategy measure of both
self-coping and perceived other-coping, although the effects of the ill¬
ness on mental health and coping efforts were assessed retrospectively.
RESEARCH AIMS AND HYPOTHESES
As the research described earlier shows, the adjustment by breast

cancer patients to the alterations in their lives caused by ongoing
stressful experiences depends on their coping responses. The present

study, based on Ben-Zur (2001) and Ben-Zur et al. (2001), investigates
spouses’ coping strategies regarding their wives’ illness in the initial
stage of breast cancer, assesses which coping strategies are most effec¬
tive in their adjustment to it and explores the intricate relationships
between their coping strategies and those of the patients. Two assess¬
ments of coping are examined: self-reported coping, by which each
spouse reports on self-coping with the illness, and perceptions of other-
coping, by which each spouse reports personal assessment of the other-
coping.
The first part of the research investigates the similarities and differ¬
ences in reports of self-coping and other-coping on the part of both the
patients and their spouses. At the same time, the patients’ and spouses’
self-coping reports are compared with a normative data sample to
assess the effects of the illness on their coping strategies. The second
part of the research examines the spouses’ and patients’ adjustment in
terms of distress and functioning in relation to their own use of prob¬
lem- and emotion-focused strategies and their perception of the other’s
use of these strategies. The third and final part of the study compares
coping and perceived coping strategies of spouses and patients with
data of couples in the community coping with stressors in everyday
life.
Background and illness variables as predictors of spouses’ coping
were also tested, as suggested by the model presented in Chapter 2.
Two hypotheses, based on stress and coping theories as well as cur¬
rent research on coping, underlay the study:
1. Both spouses’ self-coping by using problem-focused strategies will be benefi¬

cial in their adjustment to the illness, while self-coping by using emotion-
focused strategies will be detrimental to their adjustment.
2. Perceptions of coping strategies used by the other spouse will be related to
spousal distress and functioning. More specific, the perception of emo¬
tion-focused coping by the other spouse will be related to high self-
reported distress and low psychosocial functioning by the spouse,
while the perception of problem-focused coping will be related to
low self-reported distress and high psychosocial functioning.
The assumption made by the authors was that within the context of
illness (and other stressful events) in the family, the coping strategies
used by spouses to deal with the illness are appraised by each other.
Such strategies as active coping and planning, which are considered
problem-focused strategies, are positively related to high levels of con¬
trol and optimism and low anxiety (Carver et al., 1989). Conceivably,
when one spouse perceives the other as using such strategies, the one
spouse’s level of distress may be lowered and the result may be better
adjustment. This can occur through a process of increased mutual con¬
fidence in the spouses’ ability to help and support each other while
going through the stressful encounter. In contrast, emotion-focused
strategies such as ventilation or mental and behavioral disengagement
are related to low control and pessimism and heightened anxiety
(Carver et al., 1989). The perceived use of such strategies by spouses
may lead to greater distress and poorer adjustment through a process
of reduced confidence in the other’s ability to be helpful and support¬
ive.
METHOD
Breast Cancer Group: Sample
The sample consisted of seventy-three married patients and their

spouses, described in Chapter 4.
Breast Cancer Group: Questionnaires
1. Self-Coping and Perceived Other-Coping Questionnaires. Coping strate¬

gies were measured by a 30-item short Hebrew version of the COPE
scale (Carver et al., 1989), developed by Ben-Zur and Zeidner (1995),
with both patients and spouses instructed to assess their use of coping
options in dealing with the patient’s illness. The items depict various
coping options (e.g., “I make a plan of action”; “I learn to live with it”).
Respondents are asked to rate the extent that each option is used on a
4-point scale (0=not at all, 3=,great extent; the scale was transformed so
that the range was 1-4). The scale includes fifteen strategies, each rep¬
resented by a 2-item subscale as translated from the original scale
(range 2-8). The strategies are active coping, positive reinterpretation
and growth, planning, emotional social support, instrumental social
support, suppression of competing activities, acceptance, mental dis¬

engagement, ventilation, behavioral disengagement, denial, restraint,
religion, alcohol/drug disengagement, and humor (see Chapter 3).
Table 5.1 shows the means of the fifteen coping strategies used by
the patients and spouses. Following factor analyses with Varimax rota¬
tion, two main scales, similar to those used in earlier research (Ben-Zur
& Zeidner, 1995), were created: 1) A problem-focused (PF) scale, com¬
posed of active coping, planning, suppression, instrumental support,
emotional support, and positive reinterpretation (a=.73 and .82 for
patients and spouses, respectively); and 2) An emotion-focused (EF)
scale, composed of ventilation, denial, behavioral disengagement, reli¬
gion, and restraint (a=.79 and .69, respectively). The correlations
between the PF and EF coping scales were minimal for both patients
and spouses (.00 and .28, respectively).
A second, 30-item version of the COPE scale was administered to
patients and spouses, who were instructed this time to assess the use of
coping options by their spouse in dealing with the patient’s illness.
Based on factor analyses applied to patients’ and spouses’ scores, two
scales, identical to those used for the self-reported coping, were creat¬
ed for the perceived other-coping PF scale (a=.69 and .77 for patients
and spouses, respectively) and the perceived other-coping EF scale
(a=.75 and .69, respectively). The correlations between these scales
were minimal for both patients and spouses (.23 and .18, respectively).
2. The Brief Symptom Inventory (BSI). The BSI properties are
described in Chapter 4, p. 101.
3. Psychosocial Adjustment (PSA). The PSA is described in Chapter 4,
pp. 101-102.
4. Demographic and Medical Questionnaire. As described in Chapter 4,
pp. 102.
Community Group: Sample
The community sample consisted of a subsample of fifty-nine cou¬

ples who were not confronting illness, out of a total of 143 couples
described in Chapter 4, pp. 102. Their demographic characteristics
were similar to those of the entire group: husbands’ mean age 49.54
Table 5.1. Means of Reports on Self-Coping and Other-Coping by Spouses and Patients for
Fifteen Coping Strategies
Self-coping Other-coping
Coping Strategies Spouses Patients Spouses Patients

Active coping 6.33 6.97 6.78 6.75
Positive reinterpretation and growth 5.59 5.64 5.61 5.03
Planning 5.84 6.45 6.52 5.89
Emotional social support 4.29 5.96 5.64 4.20
Instrumental social support 4.68 4.77 5.52 3.63
Suppression of competing activities 5.07 4.82 5.33 5.22
Acceptance 6.58 6.96 6.59 6.88
Mental disengagement 3.74 4.36 4.18 3.66
Ventilation 4.42 4.78 4.68 4.29
Behavioral disengagement 3.71 3.88 3.67 3.11
Denial 4.33 4.63 4.24 4.10
Restraint 4.03 4.29 3.62 3.98
Religion 4.15 4.71 4.53 3.74
Alcohol/drug disengagement 2.56 2.36 2.52 2.44
Humor 3.04 3.84 3.03 2.96
n=73
(£0=10.18), wives’ mean age 46.54 (£0=10.18); husbands’ mean years

of education 14.88 (£0=3.01), wives’ mean years of education 15.44
(£0=2.65). Ninety percent of the husbands and 95% of the wives were
born in Israel, Europe, or the United States, and most were employed
(91% and 88%, respectively).
Community Group: Questionnaires
1. Self-Coping and Perceived Other-Coping Questionnaires. Coping strate¬

gies were measured by the same 30-item short Hebrew versions of the
COPE scale described for the cancer patients earlier. Both spouses
were instructed to assess their own and their spouse’s use of coping
strategies in dealing with everyday problems.
The means of the fifteen coping strategies used by the husbands
and wives are listed in Tables 5.10 and 5.11. Two scales, identical to
those used for cancer patients, were then constructed-a problem-
focused scale and an emotion-focused scale. However, the reliability of
the problem-focused scale was low, leading to the use in the analyses of
the fifteen individual scales only.
Procedure
Same as described in Chapter 4, p. 102.
RESULTS
Assessments of Coping Strategies of Spouses and Patients
Table 5.2 shows the T scores of the fourteen coping strategies1

reported by the spouses and patients, computed by subtracting the nor¬
mative scores (separately for spouses and patients) obtained in the rep¬
resentative sample, the t values for assessing the differences, and the
intraspouse correlations. Table 5.2 shows that spouses’ ratings were
higher than the norms on the acceptance and denial strategies and
lower than the norms on humor, restraint, emotional support, and
mental and behavioral disengagement. While patients also rated high¬
er than the norms on the acceptance and denial strategies, they showed
relatively high levels of active coping and planning as well. In com¬
paring spouses’ and patients’ responses for the fourteen coping strate¬
gies, spouses were found to be significantly lower than the patients in
five strategies (active coping, planning, emotional support, mental dis¬
engagement, and humor). Spouses’ and patients’ scores were positive¬
ly and significantly correlated for only five of the strategies (positive
reinterpretation, emotional support, ventilation, denial, and religion).
Since normative data were unavailable for the perceptions of other-
coping, T scores are not available for these data.
As can be seen in Figure 5.1, both spouses rated themselves rela¬
tively high on acceptance and denial strategies and relatively low on
humor and restraint. Patients rated themselves high on active coping,
planning, acceptance and denial, and low on restraint.
The analyses that follow were applied to the PF and EF coping
strategies according to spouses’ reports on self-coping and other-cop¬
ing. Table 5.3 shows the means of patients and spouses on the self-cop¬
ing PF and EF scales. Table 5.3 shows that, and as observed previously
in the analysis of individual strategies, patients scored significantly
1. The scale applied to the normative sample did not include the alcohol/drug disengagement strat-
Table 5.2. Means of TScores of Spouses’ and Patients’ Self-Coping, <Test Results and Pear¬
son Correlations
Pearson
Coping Strategies Spouses Patients t test r
Active coping 50.82 55.33 -3.24** -.07
Positive reinterpretation and growth 47.65 47.19 0.28 .32**
Planning 48.66 53.15 -2.76** .04
Emotional social support 44.62 51.78 -4.47*** .23*
Instrumental social support 48.88 46.77 1.08 .14
Suppression of competing activities 47.96 47.20 0.43 .06
Acceptance 58.32 60.39 1.33 -.08
Mental disengagement 45.52 49.07 -1.99* .04
Ventilation 49.75 50.43 0.50 .48***
Behavioral disengagement 46.35 47.26 0.51 .03
Denial 52.30 54.77 1.45 .36**
Restraint 42.47 45.27 1.65 .22
Religion 47.75 49.51 1.30 .52***
Humor 42.32 48.13 -3.62*** -.06
n=73; */K.05; **/K.01; *** p<.001
higher than spouses on both PF (£=-2.58, /j=.01) and EF coping

(£=-1.97, p=.05). The results for the reports on other-coping are
reversed-spouses’ reports on patients’ PF are higher than patients’
reports on husbands’ PF (£=4.85, /*=.0001)—with a similar, though
smaller trend observable for EF coping (£=1.98, p=.05).
Ipsative (relative) scores were used to compare PF and EF strategies
in the self-coping and other-coping reports. The scores were computed
as follows: the overall mean and SD were computed over each patient’s
ratings of the fifteen strategies (either self- or other-Coping). The over¬
all mean was then subtracted from each strategy score and the result
was divided by the SD. Each ipsative score thus represents the relative
distance from the individual’s overall rating. Following these computa¬
tions, the ipsative means of the PF and EF strategies were computed for
each individual for both self- and other-coping. Figure 5.2 presents the
means of these scores. The figure shows the patients rated themselves
higher than the spouses on PF coping and lower than the spouses on
EF coping. A comparison of self-ratings with other-ratings seems to
show that spouses rate patients higher on PF coping than they rate
themselves, while patients rate spouses lower than themselves on the
PF and EF coping scale. A three-way ANOVA consisting of spouses
(husband/wife) x type of rating (self/other) x type of coping scale
Figure 5.1. 7’Score Means of Self-Coping Strategies of Spouses and Patients
—o— Spouses
—#— Patients
T score
n=l3; ACT=Active Coping; POS=Positive Reinterpretation; PLN=Planning; EMO=

Emotional Support; INS=Instrumental Support; SUP=Suppression; ACC=Acceptance;
MEN=Mental Disengagement; VEN=Ventilation; BEH=Behavioral Disengagement;
DEN=Denial; RES=Restraint; REL=Religion; HUM=Humor
(PF/EF) resulted in a significant triple interaction (F[l,72]=6.44, p <

.05).
Testing the Research Hypotheses
Pearson correlation analyses were applied to the PF and EF scores

of both patients and spouses, with the results depicted in Table 5.4. The
patients’ and spouses’ PF scores were not correlated highly on the self¬
coping (r=.20) or the other-coping (r=.24) data. In contrast, the corre¬
sponding EF scores were highly correlated [r=.46 in both cases). In
addition, the patients’ self-coping scores were positively related to the
spouses’ other-coping data (^=.49 and .61 for PF and EF, respectively),
and the spouses’ self-ratings were positively related to the patients’
other-PF and EF scores (r=.26 and .45 for PF and EF scores, respec¬
tively). Thus, the other-coping data validated the self-coping data. Most
Table 5.3. Means and Standard Deviations of Spouses’ and Patients’ Problem-Focused and
Emotion-Focused Self-Coping and Perceptions of Other-Coping
Reports on Self-Coping Reports on Other-Coping
Spouses Patients Spouses Patients

M SD M SD M SD M SD
Problem-focused 5.29 1.32 5.77 1.14 5.90 1.12 5.12 1.10
Emotion-focused 4.13 1.25 4.46 1.47 4.15 1.23 3.84 1.35
r=73
Figure 5.2. Means of Spouses’ and Patients’ Self-Coping and Perceptions of Other-Cop¬
ing.
Spouses Patients
Self Ot ler Self Ot ier
PF EF PF EF PF EF PF EF
0.6
0.4
y ':> .
T. •A
nU.Z
O
V_: e
4/
0
■
-0 ->
U.i-
-0.4
n=73; PF=problem-focused; EF=emotion-focused. The data are based on ipsative scores.
prominent are the correlations between self- and other-coping (.55 and
.72 for spouses’ PF and EF, .45 and .67 for patients’ PF and EF, respec¬
tively).
Table 5.5 shows the correlations between patients’ and spouses’
GSI, PSA, and coping scales. The self-coping EF scales for both spous¬
es and patients are highly positively related to their distress and nega¬
tively related to their functioning, with the same pattern observable for
the other-coping and distress ratings. However, the PF coping scales
are not related to low distress, although they positively relate to the
patients’ and the spouses’ PSA. Thus, the two hypotheses were mainly
Table 5.4. Pearson Correlations Between Spouses’ and Patients’ Problem-Focused and Emo¬
tion-Focused Self- and Other-Coping Scales
Self-Coping Reports Other-Coping Reports
Self-Coping Reports
Spouses
PF
EF .28*
Patients
PF .20 -.24*
EF -.08 .46*** .00
Other-Coping Reports
Spouses
.55*** -.03 49*** -.07
PF
EF .08 y2*** -.13 .61*** .03
Patients
.26* 45*** .24*
PF -.01 .01 -.02
EF -.15 45*** -,ii .67*** -.18 .46*** .17
n=73; * p<.05; **/K.01; *** /K.001; PF=problem-focused; EF=emotion-focused
confirmed in regard to the EF coping strategies and only weakly so in

regard to PF coping.
In order to assess the unique contribution of each perceived other-
coping scale to the adjustment measures, two series of regression analy¬
ses were conducted. In all analyses, the GSI or PSA scores were treated
as the dependent variables and perceived other-coping as the inde¬
pendent variable. The first set of analyses was designed to assess the
extent to which perceptions of other-coping are independent of reports
on self-coping. When patients’ self-coping was entered as a control
variable, the association of patients’ perceived other-coping for the EF
scale with their PSA scores remained negative and significant (f3=-.31,
/K.05). The association with GSI, however, was greatly reduced
(P=.21), while the report on EF self-coping showed a high association
with GSI. In contrast, husbands’ perceived other-coping measured by
both PF and EF scales remained related to PSA (P=.32, p<.05) and
GSI (|3=.33, jfr<.05), respectively, as found for the simple correlations,
TABLE 5.5. Pearson Correlations Between Spouses’ and Patients’ GSI, PSA, and Self- and
Other-Coping Strategies

Spouses
GSI .06 .41*** -.17 .29** -.06 .46*** .22 .35**
PSA .25* -.20 .25* -.23 .36*** -.28* .06 -.33**
Patients
GSI -.07 .35** -.08 .67*** -.15 .57*** .06 .57***
PSA .18 -.30** .27* -.51** .22 -.37*** .14 -.51***
w=73; *p<.05; **/K.01; ***/K.0001; GSI=Global Severity Index; PSA=Psychosocial Adjust¬
ment; PF=problem-focused; EF=emotion-focused
while their reports on self-coping scales did not show significant asso¬
ciations with adjustment measures.
The second set of analyses used the actual self-report of other-cop¬
ing as a control variable. The introduction of this variable did not affect
the associations between perceived other-coping on the EF and PF
scales and adjustment for both patients and spouses. It seems, there¬
fore, that the perceptions of other-coping are independent from the
self-reports of other-coping in their associations with distress and psy¬
chosocial adjustment.
Assessing Specific Coping Strategies and Adjustment
Tables 5.6 and 5.7 present the associations between the specific self¬
coping or other-coping strategies and the adjustment scores of spouses
and patients. Table 5.6 shows the spouses’ GSI is largely positively
related to emotion-focused strategies such as ventilation, mental disen¬
gagement, and denial, while their PSA is positively related to positive
reinterpretation, planning, and humor, with no associations with emo¬
tion-focused strategies. While the patients show similar associations
overall, these are generally higher than those found for the husbands.
In Table 5.7, spouses’ perceived other-coping strategies of ventilation
and mental disengagement are related to their distress, while their per¬
ceived other-coping in terms of active coping and planning are nega¬
tively related to their distress and positively related to their
Table 5.6. Pearson Correlations Between Self-Coping Strategies and Spouses Distress and
Adjustment
Spouses Patients
Spouse/Patient
Seif-Coping GSI PSA GSI PSA
Active coping -.01 .18 -.02 .20
Positive reinterpretation and growth .03 ,40*** -.28* ^42***

Planning -.11 .24* -.27* .31**
Emotional social support .14 .14 .13 -.01
Instrumental social support .10 .13 .04 .17

Suppression of competing activities .07 .00 .08 -.02
Acceptance .10 .13 -.13 -.02
Mental disengagement .29* -.09 .11 .03

Ventilation 48*** -.18 .67*** — 43***
Behavioral disengagement .07 .02 .54*** -.50***
Denial .24* -.21 .38*** -.29**
Restraint .30** -.22 .42** -.32*
Religion .29** -.10 .48*** -.36***
Alcohol/drugs disengagement .26* -.14 .15 -.14
Humor -.06 .30** -.22 .39***
n=73; * p<.05; ** fK.01; *** /K.001; GSI=General Severity Index; PSA=Psychosocial Adjust¬
ment.
psychosocial functioning. In contrast, the patients’ perceived other-cop¬

ing strategies of ventilation, denial, mental disengagement, behavioral
disengagement, and religion are positively related to their distress,
while negative associations are observed for these strategies and psy¬
chosocial functioning. Generally, the spouses’ correlations with GSI
and PSA are higher than the patients’ in both these tables.
Testing the Model
Table 5.8 shows the associations between the PF and EF coping

scales and demographic and illness variables. Several interesting data
are observable in the table. The PF self-coping scale is negatively relat¬
ed to age of spouses, as are ratings of each other’s PF. In contrast, high
level of education for both spouses is related to low EF self-coping, as
is country of origin (Israeli- and European-born reported using less EF
coping than subjects of Asian/African origin). Similar results are
obtained for EF other-coping and education or country of origin of the
other.
Table 5.7. Pearson Correlations Between Perceptions of Other-Coping Strategies and

Spouses’ Distress and Adjustment
Spouses Patients
Other-Coping GSI PSA GSI PSA

Active coping -.23* .25* -.09 .08
Positive reinterpretation and growth -.04 .31** .05 .16
Planning -.39*** .46*** -.15 .26*
Emotional social support .16 .25* .14 -.03
Instrumental social support .08 .07 .12 .10
Suppression of competing activities .07 .18 .11 -.04
Acceptance .04 .24* -.02 .03
Mental disengagement .28** -.06 .53*** -.39***
Ventilation 44*** -.15 .52*** -.41***
Behavioral disengagement .52*** -.29** .38*** -.37***
Denial .11 -.29** -.42***
Restraint .31** -.12 .20 -.19
Religion -.22 -.13 .47** -.41***
Alcohol/drugs disengagement .26* -.10 .15 -.07
Humor -.06 .27* -.17 .43***
n=73; * p<.05; ** /K.01; *** /x.001; GSI=General Severity Index; PSA=Psychosocial Adjust¬
ment.
Regression analyses of the husbands’ GSI and PSA scores were

conducted using their own PF and EF scores as the independent vari¬
ables. Based on the data shown in Table 5.8, five demographic vari¬
ables were also included: age, education, work status, country of origin,
and involvement in surgery decision. The results were analyzed using
a path model in which PF and EF coping are assumed to contribute to
GSI and PSA scores, while the demographic variables are assumed to
contribute to both PF and EF coping as well as to distress and PSA. Fig¬
ure 5.3 depicts the path model. EF coping is positively related to GSI
while PF coping is positively related to PSA, as hypothesized. In addi¬
tion, country of origin contributes to EF coping.
Figure 5.4 shows the path analyses results when spouses’ GSI and
PSA scores were regressed on both self-coping and perceptions of
other-coping, including demographic attributes as well (not shown in
the figure). The figure shows when the spouse’s perceptions of his
wife’s coping are entered into the regression together with self-coping,
these perceptions are related to distress and adjustment, while the self¬
coping contribution disappears. The results of the patients’ regressions
are also shown in the figure for comparative purposes. In contrast to
Table 5.8. Correlations Between Spouses’ and Patients’ Demographic Variables, Self-Cop¬
ing and Other-Coping Strategies
Demographic Spouses Patients Spouses Patients

and Illness
Variables PF EF PF EF PF EF PF EF
Spouses
-.33* -.01 -.15 -.04 -.26* -.06 -.24* .19
Education15 -.00 -.25* -.08 -.31** .16 -.27* .16 -.26*
Work status5 -.13 .13 -.19 -.01 -.09 .17 -.16 .17
Country of .09 .29** -.22 .21 -.19 .28* .04 .31**
origin^
Involved in .05 -.19 .02 -.13 .15 -.18 -.05 -.17
surgery
decision5
Patients
Agep -.24* .03 -.11 -.05 -.24* -.12 -.21 .16
Education15 .01 -.38*** .19 -.37*** .12 -.35** .20 -.37***
Work status5 -.12 .19 -.14 .20 -.04 .20 -.08 .27*
Country of -.14 .19 -.11 .32** -.20 .21 -.04 .37***
origin5
Number of -.05 -.04 .11 -.01 .02 .05 -.07 .02
children5
Involved in -.09 -.24* -.05 -.11 .13 -.17 .12 -.16
surgery
decision5
Type of surgery5--.07 -.10 .16 -.10 -.05 -.05 .13 -.09
Number of -.15 -.05 .07 .00 -.00 -.09 .04 .10
ill relatives15
«=73; */K.05; **/K.01; ***/K.001; P=Pearson; S=Spearman; PF=problem-focused;

EF=emotion focused
spouses, the main contributor to distress in patients is their EF self-cop¬

ing strategy. Perceptions of spouses’ coping do not contribute to the
patients’ GSI or their PSA.
Comparisons with a Community Sample
Tables 5.9 and 5.10 present the comparisons with the community
sample-a population not confronting cancer. Table 5.9 shows that the
self-PF strategies (e.g., active coping and planning) of the cancer
patients spouses play less of a role than those of the community hus¬
bands, as do cognitive strategies such as restraint, humor, and positive
Figure 5.3. Path Analyses for Spouses’ GSI and PSA Using Self-Coping and Demo¬
graphic Attributes as the Independent Variables
Involve¬
ment in
surgery
decision
n=73; GSI=General Severity Index; PSA=Psychosocial Adjustment; PF=problem-

focused; EF=emotion-focused
reinterpretation, while they show higher levels of EF coping, namely

acceptance and denial. The ill wives show a similar trend, although
they do not differ significantly from the community wives in active cop¬
ing and planning.
Table 5.10 shows the results of comparisons between the other-cop¬
ing in the cancer and the community samples. The table shows that
perceptions of other-coping for both husbands and wives show lower
Figure 5.4. Associations of Spouses’ and Patients’ Self-Coping and Their Perceptions of
Other-Coping with Distress and Adjustment
Patients Spouses
n=l3; 1. GSI=General Severity Index; PSA=Psychosocial Adjustment; PF=problem-

focused; EF=emotion-focused
2. Age, education, work status, country of origin, and involvement in surgery decision
were used in the regression analyses as control variables, but their effects are not shown
in the figure.
levels of positive reinterpretation, restraint, and humor in the cancer

sample than in the community sample, and higher levels of mental dis¬
engagement.
DISCUSSION
The study discussed in this chapter focuses on comparisons

between self-coping and interspouse perceptions of coping of breast
cancer patients and spouses, and their associations with distress and
adjustment.
The findings pertaining to self-coping strategies showed that the
patients used more problem-focused strategies than their spouses. As
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TABLE 5.9. Means and t-Tests for Comparisons of Breast Cancer and Community Samples: Husbands’ and Wives’ Self-Coping Data
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reported in Chapter 4, patients rated higher than spouses in psycho¬

logical distress. The picture of distress and coping on the part of
patients and spouses that emerges, therefore, is a complex one: the
patients scored higher than the spouses on both psychological distress
and problem-focused coping. This means that they are at one and the
same time trying to deal actively with a threatening situation while liv¬
ing under great psychological distress.
The first hypothesis of the study was partially confirmed, with the
results showing that the patients’ and spouses’ emotion-focused coping
were associated with their own high psychological distress and low psy¬
chosocial adjustment, a pattern revealed in other studies of cancer
patients (Epping-Jordan et al., 1999; Osowiecki & Compas, 1999). An
examination of the patients’ coping strategies showed ventilation,
restraint, denial, religion, and behavioral disengagement to be posi¬
tively related to distress. Thus, the results suggest that avoidance (e.g.,
denial), vigilance (e.g., ventilating), and more passive strategies (e.g.,
restraint) are related to low adjustment in the initial stage of cancer.
In contrast to other research findings (e.g., Eppingjordan et al.,
1999; Osowiecki & Compas, 1998, 1999), however, the present study
suggests that problem-focused coping is not related to distress. What
factors, then, constitute a positive contribution to the adjustment of
breast cancer patients and their spouses? An examination of specific
coping strategies shows that positive reinterpretation, humor, and
planning on the part of both patient and spouse seem to be particular¬
ly related to good adjustment. These strategies have to do with apprais¬
al-focused coping, which is termed cognitive-approach coping in Moos and
Schaefer’s coping model (1993). Thus, specific cognitive strategies that
are not active or behavioral but that may attenuate the threat by shift¬
ing perspective might be the best coping options available in this situ¬
ation.
The study also confirmed part of the second hypothesis, namely,
that perceptions of emotion-focused strategies in one spouse were pos¬
itively related to the other spouse’s personal distress and adjustment.
An examination of the specific coping strategies tested showed that
perceptions of spouses’ use of ventilation, denial, religion, and mental
and behavioral disengagement were related to patients’ elevated dis¬
tress and lowered functioning. Similar associations were found for the
husbands. According to the rest of the second hypothesis, perceptions
of problem-focused coping in the spouse would be positively related to
adjustment. This part was confirmed only in part, as the anticipated

associations were found only for the husbands. Hence, husbands’ per¬
ceptions of their wives as coping with the aid of problem-focused
strategies were associated with their own better functioning. Specific
associations were also observed between the husbands’ perceptions of
certain problem-focused strategies used by their wives (i.e., -active cop¬
ing and planning) and their low distress and high functioning levels.
Incorporating reports of self-coping in the analyses altered some of
these relationships. The results showed that after including self-reports
of the husbands’ emotion-focused coping, the husbands’ perceived
other-coping was still associated with their adjustment. In contrast, the
wives’ adjustment was not related to their perceptions of spousal emo¬
tion-focused coping, while being highly dependent on their own emo¬
tion-focused coping. These results suggest that perceiving the patient as
coping with emotion-focused strategies may constitute an important
independent factor in the spouses’ adjustment to breast cancer, but for
the patients themselves their own emotion-focused coping is more
influential than their perceptions of their husbands’ coping.
These results are unique in that past research indicated associations
of inter-spouse perceptions with such criteria as marital satisfaction
(Lev-Weisel, 1998; Lichtman et al., 1987; Ptacek & Dodge, 1995) but
not with distress or functioning of the spouses. Only one study (Ptacek
et al., 1994) reported similar associations between the perception of the
wife’s emotion- and problem-focused coping by the husband and their
mental health, showing that the husbands’ reports of other-coping were
more strongly correlated with outcomes than were the wives’ other-
coping reports. However, this study was done retrospectively, with a
smaller sample of participants and a limited number of coping strate¬
gies, and perceptions of other-coping were not analyzed by using self¬
coping measures as control variables.
The results of the present study conform with cognitive theories of
stress and coping (e.g., Lazarus, 1999; Lazarus & Folkman, 1984). The
specific coping strategies included in the emotion-focused category,
such as ventilation and disengagement, are the behavioral/cognitive
variants of coping that are anticipated when the situation is uncontrol¬
lable (Lazarus & Folkman, 1984). They are also related to pessimism
and low control (Carver et al., 1989), and to general anxiety and
depression on the individual level (Ben-Zur, 1999). Thus, the appraisal
of these coping reactions in a spouse may elevate distress and lower
functioning insofar as they communicate that the spouse may not be

capable of dealing with the stressful situation.
In contrast to the presumed associations of emotion-focused coping
with negative outcomes, problem-focused coping is usually found to be
correlated with optimism and high control (Carver et al., 1989), as well
as low distress and better performance (e.g., Ben-Zur, 1999). In the
present study, a perception of the wife as using problem-focused strate¬
gies is related to enhanced functioning of the husband. It would seem,
therefore, that perceptions of patients’ coping strategies have a stronger
impact on the spouses’ outcomes than the effect on patients’ outcomes
of their own perceptions of spouses’ coping. Such differential effects
may result from the greater involvement by the patients in their illness,
with their attention focused on their own emotional and behavioral
reactions, while the healthy husbands are more attentive to their wives’
illness and related distress symptoms and functioning. Thus, perceiving
that one’s ill spouse is dealing with the problem in ways that aim at
managing it may bring relief to the husband and may help him in per¬
forming everyday functions. Such a perception may communicate to
the husband that his wife has a sense of power and control rather than
a feeling of helplessness and an inability to keep up the fight. It may
also lead him to feel less burdened or less alone when coping with the
illness himself. In addition, a perception of problem-focused coping on
the part of the wife may facilitate the joint efforts of the couple to deal
with the situation, thus improving their joint functioning. In contrast,
perceived emotion-focused coping, such as ventilation or disengage¬
ment, may hinder such efforts and may have detrimental effects on
functioning.
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Chapter 6
SECONDARY CAREGIVER DISTRESS:

PARENTS OF ADULT CANCER PATIENTS
INTRODUCTION
A lthough the literature on cancer, and professionals working with

cancer patients, are in agreement that the illness affects the
patient’s entire family (Lewis, 1986), the impact of the illness on the
parent of the adult cancer patient has not been well documented. No
research has assessed the effect of an adult child’s illness on the childs’s
parents as secondary caregivers and the parents’ psychosocial adjust¬
ment to the illness. Most related studies, however, find an association
between the patient’s adjustment to the illness and that of the spouse
(Grandstaff, 1976; Cobliner, 1977; Worden & Weisman, 1977; Jamison
et al., 1978;Joiner & Fisher, 1981; Funch & Mettlin, 1982; Lichtman et
al., 1987; Northouse & Swain, 1987; Baider & Kaplan De-Nour, 1988;
Gilbar et al., 1995; and see Chapter 4), and between young children’s
adjustment to the illness and that of their parents or siblings (Koch et
al., 1996). Family members of an ill nonadult child often experience
psychosocial stress resulting from the disease (Carr-Gregg & White,
1987; Hamlett et al., 1992). Similarly, the diagnosis of cancer in a par¬
ent affects school-age or adolescent children in light of both changes in
the household and fear of the parent’s death (Lewis et al., 1993; Lewis,
1996).
The only extant research dealing with the relationship between the
ill adult’s adjustment to physical illness and that of the adult’s parents
is in the area of AIDS (Weitz, 1991; Brabant, 1994). These studies focus
on an assessment of the burden of the parent as caregiver when the ill
165
adult child returns to live at home. Some of the AIDS-related studies

examine the psychological tasks of the parents, including acceptance of
the diagnosis and of their child’s homosexuality, and adjustment to the
impending loss (Beckerman, 1994). Others highlight the problems asso¬
ciated with the stigma of AIDS, fear of contagion, and negative atti¬
tudes (McGinn, 1996), namely the parents’ sense of isolation and the
problem they encounter in family medical care for their HIV-infected
children. Research on adjustment to various other types of chronic ill¬
ness indicates a strong correlation between caregiver and care-receiver
distress (see Miller et al., 1996; Marsh et al., 1998; Jenkins & Schu¬
macher, 1999).
Child-Parent Relations and Illness
The importance of solidarity and cohesiveness in macro- as well as

microsocial organizations has been emphasized by Parsons (1951). Six
dimensions of cohesiveness and solidarity identified in family research
(Nye & Rushing, 1966) may be used to analyze parent-child relation¬
ships (Bengtson & Schrader, 1982). They are defined as associational—
frequency of contact and shared activities; affectional—positive feelings
of family members toward each other; consensual—degree of family
consensus on beliefs and values; functional—exchange of services; nor¬
mative—expressed in conformity mechanisms; and goal oriented—
efforts toward achieving shared goals.
According to the adult child-parent relations theory (Adams,
1968a; Mangen & Miller, 1988), parents continue to give instrumental,
economic, and emotional support as well as advice even after the adult
child is married, although the form of assistance changes with time.
When the adult child’s family is young, for example, parental assis¬
tance focuses on financial aid and baby-sitting for grandchildren. Later,
the support is mainly through advice and affection. This support grad¬
ually decreases when the child enters middle age and the parents, by
now elderly, begin to experience health problems. At this stage, the
parents expect to receive support from the children (Cooney & Uhlen-
berg, 1992). When an adult child becomes ill, or is diagnosed with can¬
cer, that adult child must cope with the threat of the illness, the side
effects, and the medical regimen, as well as with responsibility for
young children and home. The parents of the ill adult child often con¬
stitute an important coping resource, even though they are generally
Secondary Caregiver Distress: Parents of Adult Care Patients 167
not the primary caregivers. Sometimes they also become caregivers for
their child’s family as well. One of the main coping resources that may
aid the patients as well as their parents in adjusting to the illness is the
presence of social support.
Social Support and Caregiving
Indisputably, social support-by spouse, parents, children, other rel¬

atives, and friends—is the main informal resource for coping with stress
(Cohen & Lazarus, 1979; Sarason et al., 1991). However, while the
emphasis on social support as a key factor in patient adjustment to ill¬
ness is evident (Worden & Weisman, 1977; Jamison et ah, 1978; Dunkel-
Schetter, 1984; Mishel & Branden, 1987; Northouse, 1988; Sales et ah,
1992), little research has been devoted to the problem of social support
for parent caregivers of cancer patients as one of the main effects on
their adjustment to their child’s illness. An explanation for this gap,
suggested by Cone (1986), is the greater priority of the patient’s need
for support. The few extant studies on caregiver support center on the
needs of the caregiving spouse. Northouse (1988), for example, found
that although mastectomy patients and their husbands perceived a sim¬
ilar level of support from each other and from other family members,
husbands perceived significantly less support from friends, nurses, and
physicians. Thus, although support appears to be helpful to spouses,
they perceive themselves as receiving significantly less support than do
patients (Northouse, 1988; Davis-Ali et al., 1993). Northouse also found
(1988, 1996) that the degree of perceived support was the only signifi¬
cant correlate of the husbands’ adjustment to the illness. Surprising
findings by Keller et al. (1996) revealed that most spouses of cancer
patients rated the patient as their predominant source of emotional sup¬
port, with only one-third (32%) of the spouses reporting that their pre¬
dominant emotional support was from friends. Another finding, by
Schumacher et al. (1993), was that higher levels of support were relat¬
ed to lower levels of depression on the part of family caregivers.
Research has been carried out on the impact of social support in
order to gain an understanding of the informal coping-resource needs
of caregivers for all kinds of illnesses (see Wilson et al., 1990; Clair et
al., 1995; Canning et al., 1996; Miller et al., 1996; Monahan & Hook¬
er, 1997; Turner et al., 1998; Webb et al., 1998). Findings generally
relate to amount of social support as a predictor of caregiver distress,
and most of the research indicates a significant relationship between

social support and caregiver distress, depression or well-being (Clair et
al., 1995; Monahan & Hooker, 1997; Turner et al., 1998; Webb et al.,
1998). However, none of the extant studies deals with parents of adult
patients as caregivers.
The study below focuses on assessing the impact of patient vari¬

ables and caregiver social support variables on the adjustment to the
illness by parents of adult cancer patients. The hypotheses were based
on the coping-with-stress theory (Cohen & Lazarus, 1979), which posits
family support as an important component of the social resources for
coping with stressful situations; on the family system theory (Minuchin,
1974), which views the family as a system in which each individual
member affects the others even when adult children have their own
families; and on the adult child-parent relations theory (Adams, 1968a;
Mangen & Miller, 1988), which holds that parents continue to give
instrumental, economic, and emotional support even after the adult
child is married. Furthermore, the study investigated cohesiveness and
solidarity relations between parents and their adult children.
The hypotheses were the following:
1. The adjustment to the illness on the part of the parent caregiver of an adult
patient diagnosed with cancer will be poorer than that of the child's, as indi¬
cated by level of distress and psychosocial functioning.
2. A positive correlation will exist between the adjustment to the illness by the
adult cancer patient and that of the patient’s parents.
3. Increased contact (exchanges of assistance and, support) will be initiated by
the parents with their ill adult child, and by the ill adult child vis-a-vis the
child’s parents, once the illness has been diagnosed.
4. A positive correlation will exist between the psychosocial and psychological
adjustment to the illness by the caregiving parent of a cancer patient, and the
amount of social support the parent receives.
The model described in Chapter 2 was tested by using background

variables, type of illness, patient distress, and social support as the main
variables affecting the adjustment to the illness by the parents of an
adult cancer patient.
METHOD
Sample and Procedure
The research sample consisted of forty-one adult married cancer

patients and one parent each. The patients were being treated in four
oncology clinics in northern Israel during October 1996-March 1997.
Based on computerized lists of newly diagnosed (3-4 months) patients,
aged twenty-five to fifty-two, in these clinics, seventy patients were
found appropriate for the study according to the criteria, namely mar¬
ried with children and at least one living parent. Arab patients and new
immigrants were not included in the list because of a language barrier.
A letter requesting an interview was sent to the patients. Following con¬
sent, the interviewer requested the patient’s permission to interview a
parent. Of the seventy patients found appropriate for the study, twen¬
ty-nine were not interviewed: ten because they had not divulged the
diagnosis to their parents, ten because they (the patients) refused to be
interviewed, and nine because the parents refused to be interviewed.
Both the patients and the parents completed a questionnaire at their
homes with the help of a social work student. Each interview took
approximately one hour. None of the patients lived with their parents,
making the total geographic residence spread quite large. Patients who
agreed to be interviewed were asked two questions relating to their pri¬
mary and secondary caregivers: 1) Who is the person who helps you
the most at this time, or whom you would most likely ask for help if
you needed it? 2) Who is the person who helps you the most if the pri¬
mary caregiver cannot do so? All the patients reported that their pri¬
mary caregiver is their spouse and their secondary caregiver one of
their parents.
A £test of the patients who agreed to be interviewed and those who
did not indicated no statistical differences between the two groups in
terms of gender {p=0.52), age [p=A3.21), or education (p=0.30). Similar¬
ly, a t test of the parents who were interviewed and those who were not
indicated no statistical differences between the two groups in terms of
gender [p=0.27), age (/*=0.30), or education (/>=0.16).
The demographic variables of the patient sample were nine males
(22%) and thirty-two females (78%), all married, the majority born in
Israel (70.7%), mean age 40.14 (range 26-52), and mean number of
years of education 14.09 (range 10-20) (see Table 6.1). Medical vari-
Table 6.1. Means, Standard Deviations, and Percentages of Demographic Variables for Par¬
ents and Cancer Patients
Demographic Variables Parents Patients

Mean level of education in years (SD) 10.37 (4.12) 14.09 (2.69)
Mean number of children (SD) 2.83 (1.36) 2.61 •»- (4.10)
Gender %
Male 30 22
Female 70 78
Family Status %
Married 4.9 9.8
Married + children 48.8 90.2
Divorced 2.4 0.0
Widowed 43.9 0.0
Place of Origin %
Israel 26.8 70.7
South America 2.4 2.4
n=41
ables included the following diagnoses: twenty-four (52.5%) breast can¬

cer, six (14.6%) lymphoma, four (9.7%) colon cancer, and six (14.6%)
other types of cancer. All patients were being treated by chemothera¬
py during the period of the interview.
The parents’ demographic variables were twelve males (29.3%) and
twenty-nine females (70.7%), mean age 68.50 (range 49-81), and mean
number of years of education 10.36 (0-20). Twenty-two (53.7%) were
married and nineteen (46.3%) were single (widowed or divorced). Over
one-half (53.6%) were born in Europe, and one-fourth (26.8%) were
born in Israel (see Table 6.1). None of the parents had terminal or
chronic diseases such as cancer, heart disease, stroke, or cognitive
impairment illnesses.
Questionnaires
The following scales were used (see Chapter 3):

1. The Brief Symptom Inventory (BSI) was used to assess psychological
distress (Derogatis & Melisaratos, 1983). The BSI comprises fifty-three
items and is described in Chapters 3 and 4. Table 6.2 shows high inter¬
nal reliabilities of most of the BSI scales for parents and patients, with
Table 6.2. Psychological Adjustment (BSI) Means of Parents and Patients
Parents Patients
BSI Subscale M SD a M SD a
Somatization 0.45 0.61 .85 0.93 0.89 .82
Obsessive-compulsive 0.82 0.68 .77 0.82 0.77 .82
Interpersonal relationships 0.44 0.57 .61 0.47 0.62 .68
Depression 0.94 0.75 .79 0.56 0.67 .80
Anxiety 1.00 0.76 .78 1.08 0.97 .90
Hostility 0.47 0.59 .78 0.52 0.67 .80
Phobic anxiety 0.33 0.41 .43 0.59 0.83 .84
Paranoid ideation 0.51 0.66 .75 0.38 0.47 .48
Psychoticism 0.52 0.61 .70 0.41 0.58 .70
Additional items 0.88 0.75 .70 0.82 0.83 .65
GSI 0.64 0.49 .95 0.68 0.61 .96
re=41; GSI=General Severity Index.
the reliability of the total score .95 for parents and .96 for patients.
High scores represent a high distress level.
2. The Psychosocial Adjustment to Physical Illness Scale (PAIS), devel¬
oped by Derogatis (1975), was used to assess adjustment to the illness.
The questionnaire contains forty-five items and is described in Chapter
3. It covers seven areas: health care orientation, vocational environ¬
ment, domestic environment, sexual relationships, extended family
relationships, social environment, and psychological distress. One
area-sexual relationships-was excluded in this study under the
assumption that questions on this topic would prove embarrassing to
the parents. The original version was used by the patients. In the par¬
ent version, the wording was rephrased “your child’s illness” in ques¬
tions about the impact of the child’s diagnosis on the parent’s
adjustment to the illness. Table 6.3 presents the means of subscale
sums, SDs, and Chronbach alpha levels. The reliabilities of the total
score based on the means of the six subscales were .75 for parents and
.76 for patients.
3. The Multidimensional Scale of Perceived Social Support (MSPSS),
developed by Zimet et al. (1988), assesses family and friends’ support
and its significance. It includes twelve items divided into three factor
groups relating to source of support-family, friends, or significant
other. Each of these groups contains four items scored on a 7-point
scale ranging from 1 (very strongly disagree) to 7 (very strongly agree). Table
Table 6.3. Means, Standard Deviations, and Alpha Levels of Parents and Patients on the PAIS
Parents Patients
Domain M SD a M SD a
Health care orientation 7.49 3.81 .47 6.26 2.88 .37
Vocational environment 3.19 2.35 .35 5.75 3.63 .73
Domestic environment 2.32 2.58 .63 4.41 3:29 "- .71
Extended family relationships 1.03 1.61 .52 0.76 1.70 .79
Social environment 6.12 4.41 .77 5.41 3.92 .75
Psychological distress 8.07 4.29 .85 7.00 4.06 .81
n=41
TABLE 6.4. Means, Standard Deviations, and Alpha Levels of Parents’ and Patients’ Per¬
ceived Social Support (MSPSS)
Parents Patients
Scale M SD a M SD a
Significant other 6.05 1.21 .83 6.73 0.86 .90

Family 6.01 1.19 .85 5.95 1.64 .88
Friends 4.69 1.89 .94 5.93 1.44 .90
Total 5.61 1.20 .92 6.20 1.06 .89
k=41
6.4 shows high internal consistency for the Hebrew version for both
parents and patients on the scale as a whole and for each subscale.
4. The Contact Between Generation Battery (CGB) Scale, developed by
Adams (1968a) and demonstrated by Bengtson & Schrader (1982),
explores the nature of kinship relationships. Four specific questions
guide the research program in the context of the development of the
scale: 1) What are the occasions for, and the kinds of interaction
between kin, and what is their significance?; 2) What are the subjective
or attitudinal dimensions of urban kinship?; 3) What is the characteris¬
tic relationship between adult siblings and more genealogically distant
kin?; and 4) How does the kinship network interact with other societal
systems?
Based on these guidelines, five types of variables are assessed: 1)
family structure and household composition; 2) frequency and type of
activities shared by middle-aged children and their aging parents (asso-
ciational solidarity); 3) closeness with parents (affectional and consen¬
sual solidarity); 4) exchanges of assistance and support; and 5) norms
regarding how children keep in touch with parents. Two adaptive
changes were made in the scale in light of the specific aim to compare
Table 6.5. Means, Standard Deviations, and Alpha Levels of the Contact between Genera¬
tions Battery (CGB) Scales
Parents Patients
Scales M SD a M SD a
Before illness
Shared activities 2.24 0.44 .59 2.28 0.44 .56
Closeness 2.93 0.42 .52 2.80 0.52 .61
Patient helps parent 1.82 0.54 .37
Parent helps patient 1.90 0.66 .52
Patient helped by parent 2.05 0.62 .67
Parent helped by patient 1.56 0.55 .77
After illness
Patient helps parent 1.48 0.45 _*
Parent helps patient 2.24 0.79 .46
Patient helped by parent 2.08 0.70 .70
Parent helped by patient 1.43 0.47 .71
Generally
Norms of keeping in touch 2.48 0.31 .44 2.41 0.41 .45
re=41; * Small variance in answers
contact between the adult patient and the patient’s parent before and
after the illness: the wording of the questions was adjusted to relate to
a parent, and the questions relating to exchanges of assistance were
posed twice, namely in addressing the prediagnosis period and the
postdiagnosis period.
Seven scales were used in the present study (see Table 6.5): 1) shared
activities, based on twelve items assessing frequency of shared activity
before the illness {\=more than once a month; 4=never; values were
reversed); 2) closeness, assessed by seven items (highest score repre¬
sented greatest closeness); 3) exchange of assistance: child helped par¬
ents, or parents helped child before the illness, based on four items
(highest score represents helping a great deal); 4) child helped parents,
or parents helped child after the illness (three items); 5) child was helped
by parents before illness (seven items); 6) child was helped by parents
after illness (seven items); 7) norms of keeping in touch, based on four
items (1=very important; 3=not important at all; values were reversed).
5. Demographic variables consisted of age, gender, education, and
place of origin.
6. Medical variables for the patients consisted of time of diagnosis,
type of diagnosis, and type of treatment. They were gathered from the
medical records.
7. Parents and patients were also asked questions about number of

visits by parents, changes in visiting patterns, and various forms of help
by parents.
RESULTS
A chi-square test was carried out to assess differences in perceived

assistance on the part of the parent and the patient before and after
diagnosis. Table 6.6 indicates that no statistically significant differences
were found in any of the assistance activities. One-third of both groups
(31.71%) reported visits by the parent every day, with nearly one-half
the patients (46.39%) and one-third of the parents (34.15%) reporting a
change in visiting patterns. Nearly half of both groups (46.34% patients
and 43.90% parents) reported that the visits were helpful. The most
common type of help reported by both groups was emotional support
(75% patients and 73.17% parents).
Comparisons between Caregiver Parents’ and

Adult Patients’ Distress and Adjustment, and
Testing of Research Hypotheses
Table 6.7 shows the differences between the patients’ and the par¬
ents’ psychological adjustment to the illness as measured by the BSI
subscales. Statistically significant differences were revealed in three BSI
subscales—somatization, depression, and phobic anxiety. The patients
showed more symptoms of somatization and phobic anxiety, while the
parents showed more symptoms of depression. Figure 6.1 shows the T
scores for parents and patients. No gender differences were observed.
The figure shows that the parents’ T scores are higher than the norms
in the depression and anxiety subscales, while the patients’ Tscores are
higher than the norms in the somatization, anxiety and phobic anxiety
subscales.
Statistically significant differences between the two groups were
also found in three PAIS subscales (Table 6.8)—health care orientation,
vocational environment, and domestic environment. The health care
orientation of the parents was worse than that of the patients, while the
vocational and domestic environments of the patients were worse than
Table 6.6. Perception of Assistance of Cancer Patients as Described by Parents and Patients
Following Diagnosis
Parents Patients
Assistance Activities N % N %
Number of visits by parent
Every day 13 31.71 13 31.71
Three times a week 4 9.76 10 24.4
Once a week 11 26.83 4 9.82
Once in two weeks 9 21.95 7 17.10
Once a month 4 9.76 7 17.11
Changes in visiting patterns since the onset of the illness
Yes 14 34.15 19 46.39
No 27 65.85 22 53.71
Are the visits for the purpose of help?
Yes 18 43.90 19 46.34
No 23 56.10 22 53.66
Household cleaning help by the parent
Yes 3 7.32 6 15.00
No 38 92.68 34 85.00
Accompanies to medical treatment
Yes 8 19.51 7 17.07
No 33 80.49 34 82.92
Financial help
Yes 10 24.39 8 20.00
No 31 75.61 32 80.00
Emotional support
Yes 30 73.17 30 75.00
No 11 26.89 10 25.00
n=41
those of the parents. The first hypothesis, therefore, was not confirmed.
As can be seen in Tables 6.7 and 6.8, patients’ and parents’ GSI and
PAIS scores were positively correlated, as posited in the second
hypothesis. Partial correlation analyses controlling for patients’ and
parents’ age (r= 67) and education (r=.59) showed positive and signifi¬
cant partial correlations in the GSI (r=.45, /K.01) and PAIS (r=.44,
/K.01)
The CBG scales showed no differences in regard to shared activi¬
ties, closeness or norms, although several statistically significant differ¬
ences were found in the self-report data before and after illness. The
patients reported helping parents more before than after illness
(Af=1.82 and 1.48, respectively; #=4.71; /K.0001), and parents reported
receiving more help from their children before than after illness
(Af=1.56 and 1.43, respectively; £=2.56; /K.01). In addition, parents
Table 6.7. T Score Means, t-Values and Correlations between Parents’ and Patients’ Adjust¬
ment Scores as Measured by the BSI
Parent Patient Pearson

BSI Subscales Means Means /-test ' r
Somatization 47.29 54.31 -3.24** .29

Obsessive-compulsive 48.26 48.15 0.06 .10
Interpersonal sensitivity 46.40 46.68 0.17 .27
Depression 53.51 47.80 2.98** .34*
Anxiety 52.19 53.27 0.47 .37*
Hostility 46.63 47.31 0.36 .13
Phobic anxiety 47.62 52.02 -2.05* .30
Paranoid ideation 44.85 43.23 1.10 .22
Psychoticism 49.08 47.27 1.04 .35*
GSI 48.28 48.92 0.39 .41**
w=41; *p<.05; **/K.01; BSI=Brief Symptom Inventory; GSI=General Severity Index
FIGURE 6.1. TScore Means for Parents and Patients for the Nine BSI Subscales and the
GSI
—o— Parents
—Patients
T score
re=41; SOM=Somatization; OC==Obsessive-Compulsive; IS=4nterpersonal Sensitivity;

DEP—Depression; ANX=Anxiety; HOS=Hostility; PA=Phobic Anxiety; PI=Paranoid
Ideation; PSY=Psychoticism; GSI=General Severity Index
reported helping their children more after than before illness (AF=2.24
and 1.90, respectively; £=5.04; /K.0001). Thus, the third hypothesis was
confirmed in part.
Table 6.8. Means, Standard Deviations, t-tests and Correlations for Parents’ and Patients’
PAIS Subscales
Parents Patients
Pearson
Domain M SD M SD f-test r
Health care orientation 0.94 0.42 0.78 0.36 2.16* .27
Vocational environment 0.79 0.39 0.96 0.60 -2.02* .23
Domestic environment 0.39 0.47 0.63 0.47 -2.87** .36*
Extended family relationships 0.26 0.40 0.19 0.42 0.82 .34*
Social environment 1.03 0.73 0.90 0.65 0.93 .24
Psychological distress 1.15 0.61 1.00 0.58 1.36 .27
Total 0.76 0.34 0.74 0.35 0.32 .45**
re=41; */k.05; **/k.01
Comparisons regarding social support showed that patients report¬

ed more total support (£=2.59, />=. 01) than parents, as well as more sup¬
port from significant others (£=2.93, /K.01) and friends (£=3.55, /K.001)
than parents, as can be seen in Table 6.4.
Correlations between assistance measures before and after illness
were all highly positive (r=.59-.91), leading to the reduction of the data
by averaging the before-after assistance measures. The correlations
between all intergenerational measures showed shared activities to be
correlated with closeness and norms for patients (r=. 35 and .34, p<.05).
In contrast, the reports of patients helping parents were negatively cor¬
related with getting help from parents (-.32, jfrC.05) For parents, the
only association was a significant positive correlation between helping
their ill children and being helped by them (r=. 32, /K.05). Correlations
between parents and patients showed high positive values on shared
activities (r= 66, /K.001) and norms of keeping in touch (t=.46, /K.05).
Table 6.9 shows the correlations between PAIS subscales and BSI
scores for the parents and patients. A high level of agreement is indi¬
cated, suggesting that both parents’ and patients’ distress is related to
their own and each other’s psychosocial adjustment.
Table 6.10 shows negative correlations between social support of
parent and his/her distress or adjustment. Thus, the fourth hypothesis
was also confirmed: a positive correlation exists between the psy¬
chosocial and psychological adjustment to the illness by the caregiving
parent of a cancer patient, and the amount of social support the parent
receives.
Table 6.9. Pearson Correlations Between BSI Levels and PAIS Domains for Parents and
Patients
Parent GSI Patient GSI
Parent Domain-PAIS
Health care orientation .10 -.05
Vocational environment .30 -- .06
Domestic environment .46** .42**
Extended family relationships
71*** .34*
Social environment .62*** .25
Psychological distress 67*** .23
72*** .32*
Total
Patient Domain-PAIS
Health care orientation .27 -.03
Vocational environment .15 .57***
rj^***
Domestic environment .23
Extended family relationships .26 .36*
Social environment .26 .47**
Psychological distress .38** .75***
Total .38** .70***
n=A\; *fK.05; **/K.01; ***/K.001; GSI=General Severity Index; PAIS=Psychosocial Adjust¬

ment to Illness Scale
Testing the Model
With parents’ place of origin consisting of four main categories

(Israel, East and West Europe, and Asia/Africa; see Table 6.1),
ANOVAs were carried out to determine differences in BSI and PAIS
scores as a function of origin. No effects were shown for either measure
and the variable was not used in the regression analyses.
Table 6.10 shows the correlations between demographic variables,
including type of cancer (patients) and social support, and parents’ and
patients’ distress. As indicated in the table, the educational levels of the
parents and the patients were negatively correlated with the parents’
psychological distress and psychosocial adjustment. Number of chil¬
dren of patients showed a tendency toward positive correlation with
patient GSI or PAIS. Type of cancer did not correlate with patient dis¬
tress, but social support of both parents and patients correlated highly
with less distress of both. The CGB scales showed certain associations
with distress and psychosocial adjustment, namely, patients who
reported getting help from their parents before the illness showed
fewer psychosocial problems (r=—.39, />= 01), as did their parents
(^=— 31, {K.0-5), who also showed a lower GSI (r=- 33, /K.05). Greater
Table 6.10. Correlations Between Parents’ and Patients’ Demographic Variables,

Psychological Distress (GSI) and Psychosocial Adjustment (PAIS)
Totals
Parents Patients
Demographic Variables GSI PAIS total GSI PAIS total

Parents
Gender* .16 .01 -.04 -.08
Agep .06 .15 -.23 .12
Education15 -.32* -.29 .06 -.04
Number of children1* .07 .20 -.17 -.03
Social support1* -.38* -.21 -.00 -.21
Patients
Gender* .03 .02 .04 -.04
Agep -.02 .06 .13 .04
Education1* -.32* -.33* -.13 -.11
Number of children1* .25 .29 .01 -.05
Type of cancer* .08 -.05 .10 .15
Social support1* -.29 -.35* -.31* -.43**
re=41; * p<.05; ** /k.01; *** /K.001; P=Pearson; S=Spearman; GSI=General Severity
Index; PAIS=Psychosocial Adjustment to Illness Scale
closeness reported by parents was related to more psychosocial prob¬

lems for patients (r=.31, p=.05) and to higher patient distress (r=.30,
/K.05).
The cancer caregiver model presented in Chapter 2 would suggest
that parents’ distress and functioning is dependent on patients’ distress
and functioning and on demographic and illness attributes. In light of
the relatively small sample in the present research, only those variables
that showed significant correlations were used in the multiple regres¬
sions where parent GSI, total PAIS, or both were the outcomes.
Patients’ GSI or PAIS, level of education and social support, as well as
parents’ level of education, and support were used as mediating or
independent variables. Figure 6.2 shows that parental distress is relat¬
ed to patients’ level of distress and to social support, and parents’ PAIS
is related to patients’ PAIS, which in turn is related to patients’ social
support. Although some of the CGB scales showed associations with
GSI and PAIS, no significant associations were indicated in the regres¬
sion analysis.
Figure 6.2. Path Analyses of Parents’ GSI and PAIS, Using Patients and Parents Attrib¬
utes as Independent Variables
-.29
w=41; .Readjusted scores; numbers near arrows represent standard beta coefficients;
GSI=General Severity Index; PAIS=Psychosocial Adjustment to Illness Scale.
DISCUSSION
The study deals with psychosocial and psychological adjustment to

cancer on the part of parents of adult patients through a comparison of
the adjustment of forty-one patients in the initial phase of the illness
(3-4 months after diagnosis) with that of forty-one parents.
The first hypothesis was confirmed in part only, namely for two of
the six PAIS subscales. The findings showed that the parents had sig¬
nificantly more problems than the patients regarding health care ori¬
entation. By contrast, they displayed fewer problems in domestic and
work environments. Conceivably, the higher incidence of patients’
problems in domestic environment was attributable to disability during
medical treatment (surgery, chemotherapy, and radiotherapy).
In the area of psychological adjustment (BSI), the parents had more
symptoms of depression but significantly fewer symptoms of somatiza¬
tion and phobic anxiety. Thus, the caregivers tended to be more
depressive than the patients as reported by Gilbar and Refaeli (2000).
An explanation may lie in their fear of the death of their child, com¬
bined with feelings of helplessness, in contrast to the mind set of the ill
adult child, whose fear of death is offset by a sense of purposeful care
as a result of the medical treatment the child is undergoing. The differ¬

ences in the extent of depression may also be attributable to the age of
the parent. The elderly, as most gerontological literature indicates,
have more symptoms of depression than younger adults (Dunkle &
Norgard, 1992; Guttman & Lowenstein, 1992). Yet another possible
explanation for the findings is related to the fact that the parents are not
the primary caregivers and may therefore interpret the diagnosis as
worse than it is, in line with the general lay perception of cancer as a
death sentence (Menninger, 1963).
These findings lead to a key issue regarding the parents’ situation.
While the patient, spouse, and children often receive psychosocial help
as a routine part of medical treatment, which assists them in coping
with their stress, the parents of the adult cancer patient are not includ¬
ed in this therapy. Thus, although the parents are involved with their
child’s illness, they generally do not have direct communication with
the medical staff—the doctors and nurses—or with the psychological or
psycho-oncology staff. They cope alone with their feelings of pain.
Moreover, they report having less social support than the patients, a
pattern found in studies comparing spouses and patients (e.g., Nort-
house, 1988; Davis-Ali et al., 1993). This has an impact on the patient’s
psychological state as well. Helping the parents adjust to the illness is
thus important not only for their sake but for the sake of their child’s
adjustment, in view of the correlation between the two.
The findings confirmed the second hypothesis, namely that a posi¬
tive correlation exists between the adjustment to the illness by the adult
patient and that of the parent. These findings are similar to those indi¬
cated in the association between ill patients and their spouses’ distress
(Grandstaff, 1976; Cobliner, 1977; Worden & Weisman, 1977; Jamison
et al., 1978; Joiner & Fisher, 1981; Funch & Mettlin, 1982; Lichtman et
al., 1987; Northouse & Swain, 1987; Baider & Kaplan De-Nour, 1988;
Gilbar et al., 1995). They are also in accord with our findings regarding
spouses’ and patients’ distress and adjustment reported in Chapter 4.
Based on Lazarus and Folkman’s (1984) cognitive theory of stress, the
parents’ distress may be a function of their appraisal of their child’s dis¬
tress and the extent of the child’s suffering from the illness.
The findings confirm part of the third hypothesis, namely,
increased contact (exchanges of assistance and support) is initiated by
parents with their ill adult child, and by the ill adult child with the par¬
ent. As reported by the participants, parents received significantly less
assistance from the patients once the illness began, yet gave more assis¬
tance and support to the ill child. When parents are older, they gener¬
ally have their own difficulties and often require help and support from
their children in their daily routine, rather than having to extend this
type of help to their adult child (Adams, 1968a; Cooney & Uhlenberg,
1992). Even so, the present research shows, whatever support was
given by the parent still helped the child in adjusting to the illness.
The findings confirm the fourth hypothesis, namely, that a positive
correlation exists between the psychosocial and psychological adjust¬
ment of the caregiving parent of a cancer patient to the illness, and the
amount of social support the parent receives. A correlation was found
between psychological adjustment (BSI) to the illness by the parents and
the social support (MSPSS) they received, although, curiously, no sig¬
nificant correlation was found between psychosocial adjustment (PAIS)
and social support. Following the interview process, the interviewer real¬
ized that the interviewees interpreted “support by significant other” as
spousal support, while “family support” was interpreted as support by
the extended family—sisters, brothers, uncles, aunts, and cousins. Placed
in this context, therefore, the findings appear to support the family sys¬
tem theory, namely that the spouse is the main support resource in cop¬
ing with stress generally and with a diagnosis of cancer specifically. The
emotional support that the parents get from each other was found to be
significant in their adjustment to their child’s illness. This also confirms
the cognitive view of social support in marriage, namely, that spouses
are the primary resource in a stressful situation (Beach et al., 1996).
In testing the model, the parent’s social support and the patient’s
psychological distress/adjustment were found to constitute the main
effects on the psychological and psychosocial adjustment to the illness
by the parent of the adult cancer patient. By contrast, parent gender,
type of diagnosis, type of medical treatment, and patient’s age were not
related to adjustment. In short, parents adjust better to the illness when
they receive more social support and when their child feels less distress.
In addition, they report fewer psychosocial problems when their child
reports fewer problems, and vice versa. In the absence of extant
research on the psychological adjustment of parent caregivers to the
illness of an adult child, these findings may be compared with studies
on the psychological adjustment to cancer by spouse caregivers, which
indicate that the patient’s adjustment to the illness is one of the predic¬
tors of the psychological adjustment of the spouse, and vice versa (Nor-
thouse & Swain, 1987; Baider & Kaplan De-Nour, 1988; Gilbar et al.,
1995; Ben-Zur et al., 2001). Findings for other types of chronic illness
also indicate positive correlations between caregiver and care-receiver
distress (Schumacher et al., 1993; Miller et al., 1996; Marsh et al.,
1998), although these studies are based on primary caregiver samples.
An explanation for the finding that patients’ distress and social sup¬
port constitute the main effects on the parents’ psychological adjust¬
ment even though the parent is a secondary caregiver may rely on the
parent-child relationship theory (Adams, 1968a,b; Mangen & Miller,
1988). The homeostasis of the parent-child relationship that had devel¬
oped has been disrupted since the child’s marriage: the child, who had
forged a life independent of the parents, has become dependent on
them once again, at the stage of their lives when it is they who expect¬
ed to receive support from the child. With this, the parents’ fear of los¬
ing their child engenders an extremely high level of protective energy
and behavior often accompanied by anxiety, consistent with attach¬
ment theory (Bowlby, 1977)—namely, when the psychological distress
of the adult child increases, the protective instinct of the parents is
heightened as well.
The lack of impact of parent gender, type of diagnosis, type of med¬
ical treatment, or child’s age on the parent’s psychological adjustment
may be explained by the small research sample. Moreover, in the case
of cancer, which is widely perceived as a death sentence, the type of
cancer is less important. In comparison the parent’s gender does not
affect individual adjustment to the illness: losing a child is the same
tragedy for a mother and a father at any age. The level of education of
both parent and child was related to lower distress, although it did not
contribute significantly in the multiple regression. As a resource (e.g.,
Lazarus & Folkman, 1984), education seems to help in reducing dis¬
tress.
Parental support of adult children also reflects societal norms. In
Israel, where adult children tend to live in reasonable proximity to
their parents, the mutual obligations between them are clear. Parents
perceive themselves as an ongoing source of support to their children,
especially in times of crisis. Once they retire from work, they assist the
children even more, especially as baby-sitters for grandchildren. These
norms, which reflect strongly entrenched Jewish family values (Linzer,
1984; Fishman, 1994), differ from American societal norms, as depict¬
ed by Cooney and Uhlenberg (1992), namely that parents often with-
draw support from adult children as their lives become more focused
on leisure.
Notably, the small sample, the retrospective design, and the wide
age range of both the patients (twenty-six to fifty-two) and the parents
(forty-five to eighty-one) preclude definitive conclusions based on the
findings. Further research using a prospective design, larger samples,
interviews of both parents, and a three-phase assessment (initial phase,
adjuvant therapy phase, and follow-up phase) is recommended. Con¬
ceivably, these variables will affect the link between the patients’ adjust¬
ment to illness and that of their parents.
Despite the limitations of this exploratory study, however, the find¬
ings highlight the importance of parental support in the adjustment to
illness of the adult cancer patient, on the one hand, and the correlation
between the psychological adjustment to the illness (BSI) of the adult
child and that of the parents, on the other. Physicians, nurses and men¬
tal health professionals should be aware of the psychological needs of
the parents of an adult patient. Parents should be permitted to take part
in the diagnosis session and ask questions about the illness, in addition
to the participation of the primary caregiver (spouse or child). The ini¬
tiative should actually come from the medical staff, who should offer to
inform the parents about the diagnosis in order to reduce the psycho¬
logical distress of both the patient and the parents, while at the same
time bearing in mind the patient’s need for autonomy and the ethical
issues involved.
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30-41.
"
.
Chapter 7
THE SPOUSE CAREGIVER AND THE

BEREAVEMENT PROCESS
INTRODUCTION
T he loss of a loved one is an experience that occurs at some time in

nearly everyone’s life. Of all such losses, the loss of a spouse is per¬
haps the most stressful of life events in adulthood, and certainly the
most widespread acute loss (Prigerson et al., 1997). Conjugal bereave¬
ment greatly increases the risk of psychiatric complications such as
depressive symptoms, major depressive episodes (Bruce et al., 1990;
Clayton, 1990; Zisook & Shuchter, 1993; Turvey et al., 1999) and anx¬
iety-related symptoms and disorders (Jacobs et al., 1990). Moreover, it
has also been shown to be a risk factor for impaired immune function
(Irwin et al., 1987), poor physical health (Chochinov et al., 1998) and
mortality (Martikainen & Volkonen, 1996). The loss of a spouse causes
numerous aspects of the survivor’s daily life to be altered and impels
adjustment. New tasks must be accomplished, new identities assumed,
new perspectives acquired, and social relationships and interactions
altered (Lund et al., 1989). Although death in the case of cancer is
expected, an important question that arises is which variables better
predict adjustment to the loss.
The Bereavement Process
The extant literature on caregiver models discusses the psycholog¬

ical response to the loss of a loved one. Although there are differences
in these models, clearly, individuals pass through several stages, or
189
phases, of mourning as they attempt to come to terms with a major

loss: shock, anger, depression, and reorganization and recovery (Little-
wood, 1992; Worden, 1993; Wortman et al., 1993). When death is
expected, as in cancer, the bereavement process and the separation
from the loved one usually begin even before the death (Bass & Bow¬
man, 1990). However, the situation of spouse caregivers in cases of
chronic and terminal illness is unique because they are in a state of
continuing stress due to both the anticipated death of the patient as the
illness progresses and to the prolonged treatment: diagnosis, surgical
intervention, adjuvant therapy, and especially terminal care, when the
patient is fully dependent on the caregiver.
Several risk factors in bereavement typify individuals in their situa¬
tion, increasing their vulnerability to the loss or slowing down their
adjustment to widowhood. In extreme cases, these factors contribute to
pathological grief (Stroebe & Stroebe, 1993). The present study deals
with three broad groups of risk factors for this population, described in
the literature: personal resources (namely, gender and age), communi¬
cation with the dying spouse, and mode and place of death.
Personal Resources
Gender
Some studies have found no gender differences in vulnerability to

the effects of spousal loss (Gass & Change, 1989; Quigley & Schatz,
1999; Stroebe, Stroebe & Abakoumkin, 1999; Turvey et al., 1999).
Other research shows differences in both directions, namely, widowers
reporting more severe reactions to conjugal bereavement, greater
social isolation, and less emotional restitution than widows (Rosik,
1989; Bierhals et al., 1996), in contrast to widowers showing less psy¬
chological distress than widows (Thompson et al., 1991; Chen et al.,
1999) and a more rapid adjustment to loss, as reflected in higher rates
of remarriage and less articulation of sorrow (Prigerson et al., 1996;
Steele, 1992; Nieboer et al., 1998-1999).
Age
The age at which an individual loses a spouse is important to the

meaning of the loss and the stresses that the survivor must face (Lund
The Spouse Caregiver and the Bereavement Process 191
et al., 1993; Sanders, 1993; Stroebe & Stroebe, 1993). Most people
assume that they will lose their spouse when they are elderly, not in
early or middle adulthood. An earlier death often elicits reports of feel¬
ing cheated of decades of time that the survivor expected to have with
the spouse, along with feelings of abandonment. Some findings indi¬
cate more symptoms of depression and physical health problems in
young widows and widowers than in elders (Zisook, et al., 1987; Hays,
et al., 1994; Nolen-Hoeksema & Larson, 1999). Other research shows
no effect of age on amount of depression (Turvey et al., 1999). Still
other studies suggest that losing a spouse in old age, after a lifetime
relationship, evokes its own meaning and burden. Spouses’ lives are
intricately intertwined, and surviving spouses must completely restruc¬
ture their lives on the basis of a new single status, bereft of the com¬
panion they had had for most of their adult life (Nolen-Hoeksema &
Larson, 1999).
Communication with the Dying Spouse
A vital aspect of the bereavement process is the marital relationship

with the dying spouse. Communication is highly important at this
stage, yet few current studies focus on this issue (namely, Stroebe &
Stroebe, 1993, Field et al., 1999; Kelly et al., 1999). Moreover, the only
extant research on communication between spouses in the case of ter¬
minal illness was carried out in the 1980s (Northouse, 1984). Often, the
spouse caregiver restricts personal communication with the dying part¬
ner in order to protect both from the painful awareness of death. Early
studies on the correlation between open communication between
spouses and coping with loss generally indicate the value of such com¬
munication to effective adjustment during bereavement (Cohen, et al.,
1977; Worby & Babineau, 1974). Other research, however, shows no
associations between open communication and bereavement outcomes
(Vachon et al., 1977; Hinton, 1981).
Mode of Death, Place of Death, and the Bereavement Process
The circumstances of the death of a spouse are likely to affect the

course of bereavement. The death of a spouse in a car accident, or from
suicide, differs importantly in its effect on the surviving partner as com-
pared to death after an illness lasting for several years. Sudden, unex¬
pected, or untimely death has been found to result in a higher risk of
psychological distress than loss that is anticipated (Stroebe & Stroebe,
1993; Worden, 1993), although one study (Turvey et al., 1999) report¬
ed that the expectation of death did not have a significant effect on
depression in newly bereaved spouses.
In the case of chronic and terminal illness, the spouse undergoes a
period of gradual preparation over several weeks, months or longer for
the separation from the partner. When death occurs, therefore, the
spouse has accepted the loss and often feels relief that the spouse’s suf¬
fering has ended. Moreover, in expected death, such as in the case of
cancer, the spouse has the opportunity to be involved in the decision¬
making process regarding the venue of terminal care and death (Ran¬
dall & Downie, 1996), which may have an effect on the amount of
distress the spouse will feel. Most clinicians emphasize that it is in the
patient’s and the caregiver’s interest for the patient to die at home.
Addington-Hall and Karlsen (2000), however, showed that spouses of
patients who died at home had a higher level of psychological distress
than caregivers of patients who died elsewhere. Yancey and Greger
(1990) and Seale and Kelly (1997) found no difference in adjustment to
bereavement between spouses of patients who died in a hospice as
compared to a nearby hospital.
Length of hospitalization, too, may affect the bereavement process.
Pruchno et al. (1995) found that very short stays in nursing homes as
well as very long stays had similar effects on bereavement outcomes.
Speer et al. (1995), however, found no statistically significant differ¬
ences in adjustment to loss between caregiver survivors of patients
whose length of stay in a hospice varied widely.
RESEARCH AIMS AND HYPOTHESES
The first aim of the present study was to investigate the personal
resources of primary-caregiving spouses of deceased cancer patients
and the impact of such resources on their adjustment to loss. In addi¬
tion, associations were examined between variables such as place of
death, time bedridden, and communication with the patient, with dis¬
tress, grief, and adjustment. The following hypotheses were formulated,
the first one based on one of the author’s previous analyses indicating
that the adjustment to loss by widowers of cancer patients is better than
by widows (Gilbar & Dagan, 1995):
1. Widows are more distressed and show more grief than widowers.
2. Older spouses are more distressed and show more grief than younger ones.
3. Spouses of patients who died at home or were bedridden for a long time will
be more distressed and show high levels of grief.
4. Widow/ers who had open communication with the deceased are better
adjusted and show less distress and current grief.
5. Grief will be positively related to distress and psychosocial adjustment.
Moreover, a path model was tested, in which psychosocial adjustment,
current grief, and distress were hypothesized as related to past grief,
burden, and communication with the patient, as well as gender, age,
and illness variables.
METHOD
Sample
The participants in the research were spouses of cancer patients

who had died duringJanuary-October 1993, interviewed three months
to one year after the death of the patient. A letter requesting consent to
be interviewed was sent to the spouses of cancer patients who had died
during this period whether at home or in a general hospital, nursing
hospital, or hospice, according to registered data. Of 112 spouses, twen¬
ty-two refused to be interviewed (fifteen female and seven male); six¬
teen could not be located (nine female and seven male); four were
abroad; and one had died. A t test comparing the widow/ers who
agreed to be interviewed and those who did not showed no statistical
difference between the groups in terms of age, education level, or time
elapsed since the death of the spouse.
The final sample of sixty-nine subjects consisted of twenty-five wid¬
owers and forty-four widows. The mean age of the widowers was 60.96
and of the widows 61.25 (Kl). The mean number of years of education
was 12.20 for the widowers and 11.07 for the widows (Kl.20). No age
or education differences were found as a function of gender. Most par-
Table 7.1. Demographic Variables of Widow/ers
Demographic Variables
Mean age in years (SD) 61.14 (10.06) •
Mean level of education (SD) 11.48 (3.79)

Gender %
Males 36.2 ■- —
Females 63.8
Country of Birth %
Israel 19.1
Europe/U.S. 70.6
Asia/Africa 10.3
n= 69
ticipants were born in Europe and no gender difference was indicated.

The demographic data of the sample are given in Table 7.1.
Table 7.2 presents the demographic and illness data for the
deceased patients. Length of time that patients were bedridden was dis¬
tributed approximately equally between the five time spans cited. Time
elapsed since death was one year for one-half of the surviving spouses.
Most of the patients (85%) had been diagnosed within four years prior
to the research. Differences between male and female patients were
found in mean age at death (AM35.29 and 57.24, respectively; £=-3.09;
jfK.01) and in place of death: 74% of the female patients died in nursing
hospitals/hospices as compared to 36% of the male patients, while 39%
of the male patients died at home as compared to 22% of the female
patients (%2=9.23; p=.0\).
Table 7.3 presents caregiver variables. The table shows that about
50% of the spouses were sole caregivers of patients and about 40%
were helped by children. Only 26% were helped by a home nurse, and
only about 25% did not feel the burden of treatment. Most reported
having a close relationship with the spouse. No gender differences were
found for closeness of relationship, burden, type of caregiving, or use
of external help.
Instruments
Four questionnaires were used:

1. The Brief Symptom Inventory (BSI; Derogatis & Melisaratos, 1983)
was used to assess psychological distress (see Chapter 3). Table 7.4
Table 1.2. Demographic and Illness Variables of Deceased Patients

Demographic Variables
Mean age in years at death [SD) 62.37 (11.06)

Mean number of days in hospital* [SD) 39.57 (42.82)
Illness Variables
Time bedridden %
1 month 26.1
1-2 months 15.9
3 months 21.7
4-6 months 13.0
Over 6 months 23.2
Time elapsed since death %
Up to 3 months 1.4
3-6 months 21.7
6-9 months 26.7
1 year 50.7
Year of diagnosis %
1973 1.5
1982-1987 13.9
1988-1992 84.6
Place of death %
Home 30.4
General hospital 17.4
Nursing hospital or hospice 49.3
Other 2.9
«=69; *re=47 (people who died at home were not included in this category)
Table 7.3. Caregiver Variables

Closeness of relationship: Mean [SD)* 1.30 (0.77)
Caregiving responsibility %
Spouse alone 50.7
Spouse + children 39.1
Spouse and other relatives 8.7
Other 1.5
External help (nurse) %
No 50.7
Yes 26.1
Hospitalized (no need for external help) 23.2
Perceived burden during treatment stage %
Yes 52.2
Some 23.2
No 24.6
rt= 69; * 1—very close; 5=not close
Table 7.4.
/.-r. Means, utuuuuxu
Standard Deviations, and Alpha Levels of the BSI Scales
BSI Subscale M SD a
Somatization 1.06 0.95 ' . .86

Obsessive-compulsive 1.39 0.90 .75
Interpersonal sensitivity 1.07 0.82 .65
Depression 1.69 0.94 t82
Anxiety 1.40 0.91 .82
Hostility 0.82 0.73 .75
Phobic anxiety 0.88 0.65 .65
Paranoid ideation 0.97 0.78 .60
Psychoticism 0.95 0.64 .48
Additional items 1.44 0.94 .61
GSI 1.18 0.67 .95
78=69; BSI=Brief Symptom Inventory; GSI=General Severity Index
shows means, SDs, and a levels of the nine scales, additional items, and
the GSI. The table indicates the alpha levels are satisfactory.
2. The Psychosocial Adjustment to Physical Illness Scale (PAIS; Derogatis,
1975; see Chapter 3) was adjusted to assess loss. Table 7.5 shows the
means, SDs, and a levels for the six areas investigated and the total.
(Inasmuch as the health scale included only two items, which were
phrased unclearly and as a result were negatively related to the other
PAIS items, the health subscale was not included in the mean or alpha
computations or in the analyses that followed.)
3. The Texas Revised Inventory of Grief (TRIG) Scale (Faschingbauer et
al., 1987) aims to quantify and measure the intensity of grief reactions
during the bereavement process, which varies with time, gender, and
degree of relatedness to the deceased. TRIG is a 2-scale 5-point Likert-
type measure. The first part covers past behavior and feelings, with the
respondent asked to think back to the time of death of the spouse in
question, replying to eight items (0=not true; 4=true; a=.86-.89). The
second part covers present feelings, with the respondent asked to
report personal feelings at the time of interview by answering thirteen
questions (a=.77-.87). The construct validity of both scales was
assessed by its authors by testing categories of variables that were
expected to elevate grief (females, the death of a young spouse). A high
score represents a high level of grief reactions. Table 7.5 shows the
means, SDs and alpha levels of both parts of the TRIG.
4. The communication subscale of the ENRICH measure of marital quali¬
ty was used to examine the caregiver’s communication with the patient
(see Table 7.5). ENRICH is a self-report measure developed by Olson
Table 7.5. Means, Standard Deviations, and Alpha Levels of PAIS, TRIG and Communica¬
tion Scales
Scale M SD a
PAIS
Health-care orientation 1.51 0.94 .89
Vocational environment* 0.68 0.58 .65
Domestic environment 0.86 0.51 .65
Extended family relationships 0.55 0.62 .75
Social environment 1.36 0.78 .81
Psychological distress 1.26 0.53 .61
Total 0.97 0.44 .75
TRIG
Past 2.40 0.70 .66
Present 3.18 0.90 .95
Communication with Patient
During illness 1.52 0.71 .76
About death** 2.15 1.03 ,75a
rt=69; * rc=35; **n=61; a One question was deleted; PAIS=Psychosocial Adjustment to Illness
Scale; TRIG=Texas Revised Inventory of Grief
et al. (1982) and adopted to Hebrew by Lavee (1995). The communi¬

cation dimension reflects the individual’s feelings and attitudes toward
communication in the marital relationship. The subscale contains ten
questions about communication rated on a 5-point agreement scale
(0=do not agree; A=definitely agree). Six additional questions about the
spouses’ communication with the patient regarding the patient’s
approaching death were included. The reliabilities of the two scales are
satisfactory.
RESULTS
Differences Between Widowers and Widows: Testing the

First Hypothesis
Higher T scores for widows in the area of psychological distress

were shown in the BSI (see Table 7.6), revealing more severe psycho¬
logical symptoms in each area and in the total. The differences between
the widowers and widows reached the level of statistical significance in
interpersonal sensitivity, depression, anxiety, and the GSI. More
broadly, as can be seen in Table 7.6 and Figure 7.1, all the widows’ T
scores and eight of the widowers’ Tscores are above the norm.
Table 7.6. TScore Means of Widowers and Widows and /-tests Results
Widowers Widows /-test

BSI Subscale
52.18 58.68 -1.87
Somatization
52.21 57.33 -1.85
Obsessive-compulsive
58.16
_2 78**
Interpersonal sensitivity 50.51
59.50 67.20 “2.27*
Depression
52.40 61.15 -2.73
Anxiety
49.91 52.34 -0.92
Hostility
53.60 58.78 -1.94
Phobic anxiety
Paranoid ideation 49.35 51.74 -0.95
Psychoticism 53.73 57.37 -1.41
53.15 59.92 -2.47*
GSI
re=69; *{K.05; **/K.01; BSI=Brief Symptom Inventory; GSI=General Severity Index
FIGURE 7.1. TScore Means of Widowers and Widows
—a— Widowers
■ Widows
T score
«=69; SOM=Somatization; OC=Obsessive-Compulsive; IS=Interpersonal Sensitivity;

DEP=Depression; ANX=Anxiety; HOS=Hostility; PA=Phobic Anxiety; PI=Paranoid
Ideation; PSY^Psychoticism; GSI=General Severity Index
Notably, the patterns of both groups are similar across the nine BSI
subscales, as shown in Figure 7.1. The widows also scored higher in
psychosocial adjustment to loss (PAIS), revealing significantly more
adjustment problems in the distress subscale (see Table 7.7; the area of
Table 7.7. Means of PAIS, Bereavement (TRIG) and Communication Measures by

Gender
Widowers Widows
Domain M SD M SD Hest
Vocational environment-1" 0.75 0.66 0.63 0.52 0.62
Domestic environment 0.93 0.47 0.81 0.53 0.91
Extended family relationships 0.73 0.55 0.45 0.62 1.84
Social environment 1.30 0.64 1.39 0.85 -0.44
Psychological distress 1.09 0.49 1.36 0.53 -2.07*
Total 0.98 0.40 0.97 0.47 0.13
TRIG-past 2.32 0.63 2.45 0.74 -0.77

TRIG-present 2.79 0.97 3.40 0.77 -2.86**
Communication 1.31 0.41 1.64 0.78 -1.93

Communication about death 1.80 1.04 2.37 0.98 -2.17*
k=69; + rt=35; *p<.05; **/K.01; TRIG=Texas Revised Inventory of Grief
sexual relationships was excluded, inasmuch as only seven of the sixty-

nine respondents answered these questions).
The results in the comparative breakdown relating to the bereave¬
ment process (the TRIG scale) showed that widows had more prob¬
lems than widowers both in past and present behavior, although only
in present behavior did the level of difference reach statistical signifi¬
cance (Table 7.7). Less communication about death was reported by
the widows than by the widowers. Thus, the first hypothesis was con¬
firmed, namely, widows are more distressed and show more grief than
widowers.
Testing the Second and Third Hypotheses
Table 7.8 shows the correlations between demographic and illness

variables and the measures of distress and adjustment. The table shows
that gender and age were correlated mainly with distress (BSI) and
present grief (TRIG-present), reflecting more distress and grief report¬
ed by widows and older spouses. In contrast, highly educated spouses
reported less distress and grief than less educated. Regarding illness
variables, the longer the deceased was bedridden, and the more time
that elapsed since death, the higher level of psychosocial problems,
and more grief in the past. Less burden was associated with fewer psy-
Table 7.8. Correlations between Demographic or Illness Variables and GSI, PAIS, and
TRIG
TRIG TRIG
Variables GSI PAIS past •present
Genders .33** -.00 .14 .31**

Agep .32** .14 .18 _ .39**
Communication11 .22 -.04 .02 -.02
Communication1 about deathp .15 -.07 .08 .15
Education1* -.28* -.12 -.40*** -.21
Burdenp -.20 -.34** -.07 .15
Bedriddenp .10 .27* .33** .05
Time since deathp .34** .38** .23* .03
Place of death+s .00 .03 -.03 -.25*
n=69; a n=61; * fx.05; ** fx.01; ***/x.0001; +(l=home; 2=hospital); P=Pearson; S=Spear-

man; GSI=General Severity Index; PAIS=Psychosocial Adjustment to Illness Scale;
TRIG=Texas Revised Inventory of Grief
chosocial problems. Thus, the second and third hypotheses were con¬
firmed: older spouses, and spouses of patients who died at home or
were bedridden for a long time, were more distressed and showed high
levels of grief.
Testing the Fourth and Fifth Hypotheses
Table 7.9 shows the correlations between grief, distress, and adjust¬
ment measures. As can be seen, the TRIG measures were highly corre¬
lated with most of the PAIS scales, while communication with patients
showed practically no such associations. The same trend is observable
in Table 7.10, where the bereavement measures are highly correlated
with distress but not with the communication measures. Thus, the fourth
hypothesis, namely, widow/ers who had open communication with the
deceased are better adjusted and show less distress and current grief,
was not confirmed, while the fifth hypothesis, positing grief as positive¬
ly related to distress and psychosocial adjustment, was confirmed.
Testing a Model of Grief
To assess the overall pattern of results, a path analytic model was

used. Multiple regression analyses were applied to outcome measures
of GSI, PAIS, and TRIG (present grief), using past grief, burden,
demographics, and illness variables as predictors. Communication
Table 7.9. Pearson Correlations between PAIS Subscales and GSI, Bereavement (TRIG),
and Communication Measures
TRIG TRIG Communication

Domain GSI past present Communication about death
Vocational
environment .31 .33* .33* -.08 -.41*
Domestic
environment .42*** .11 -.03 -.09
Extended family
relationships .19 .01 -.18 -.00 -.18
Social environment .48*** .37** .28* -.10 .04
Psychological
distress 71 *** .57*** .39** .11 .05
Total .62*** 47*** .24* -.04 -.07
»=69; +n=35; */K.05; **/K.01; ***/k.0001; GSI=General Severity Index; TRIG=Texas
Inventory of Grief
Table 7.10. Pearson Correlations between Distress, Bereavement (TRIG), and Communica¬
tion Measures
TRIG TRIG
GSI past present Communication
TRIG-past .59**
TRIG-present .48** .51*
Communication .22 .02 -.02
Communication about death .15 .08 .15 .05
re=69; * /K.01; ** /K.001; GSI=General Severity Index; TRIG=Texas Inventory of Grief
measures, which showed no correlations with distress or grief, were not

included in these analyses. Figure 7.2 shows the path analytic model for
grief and PAIS. The figure shows that past grief contributes to present
grief and PAIS and is associated with education and time bedridden,
while burden contributes to PAIS and is associated with time bedrid¬
den. The GSI results were similar to those of grief and therefore were
not included in the figure.
DISCUSSION
The loss of a spouse is one of the most stressful situations in the

cycle of human life, triggering psychosocial, psychological, and behav¬
ioral reactions. Although death from cancer is expected, the spouse’s
bereavement may be affected by the ongoing stressful situation during

the illness process.
The present study assesses the adjustment to loss of sixty-nine wid¬
ows and widowers whose spouses had died of cancer. The main find¬
ings indicate that the widows suffered more than the widowers,
supporting the first hypothesis, namely, women survivors are more dis¬
tressed and show more grief than men. This conclusion derives from a
comparison of the psychological (BSI), psychosocial (PAIS), and
behavioral subscales (TRIG) that test adjustment.
These findings reinforce previous research (Thompson et al., 1991;
Steele, 1992; Gilbar & Dagan, 1995; Prigerson et al., 1996; Nieboer et
al., 1998-1999; Chen et al., 1999). However, they do not conform with
other research (Gass & Change, 1989; Rosik, 1989; Bierhals, et al.,
1996; Quigley & Schatz, 1999; Stroebe, et al., 1999; Turvey et al., 1999)
indicating no gender differences in vulnerability to the effects of
spousal loss.
A possible explanation for the present findings, namely, poorer
adjustment to loss by widows than by widowers, is the particular nature
of the population under study. A widow whose husband has died of
cancer is under greater stress than a widower under similar circum¬
stances because of the difference in the burden of care borne by her
during the duration of her spouse’s illness, as the burden of caregiving
falls mainly on the wife. In contrast, the husband caregiver of a termi¬
nally ill wife may be under less stress from the caregiving tasks because
he generally gets help from paid caregivers and/or family members,
who are more prone to assist him in this situation, so that the caregiv¬
ing burden is shared. Conceivably, therefore, the degree of his cumu¬
lative stress when his wife dies is lower, which may account for gender
differences in the process of the adjustment to bereavement.
Another possible explanation for the findings is that the prolonged
illness of a male spouse may cause financial problems due to his pro¬
longed absence from work and the cost of medical treatment. His death
may cause a deterioration in the wife’s financial situation as a result of
a significant drop in income (Zick & Smith, 1988). These difficulties
constitute an existential life-threatening situation that contributes to the
widow’s stress situation. A drop in income due to the death of a wife,
by contrast, is far less common.
In summary, a discussion of the differences in adjustment to
bereavement between widowers and widows whose spouses have died
Figure 7.2. Path Analyses of TRIG-Present and PAIS
re=69; Numbers near arrows represent regression coefficients; PAIS=Psychosocial Adjust¬

ment to Illness Scale; TRIG=Texas Revised Inventory of Grief
of cancer must take into account the broader psychosocial differences

between men and women. Stroebe and Stroebe (1987) questioned
whether the bereavement process for widowers can be examined by
the same scales as those used to study the bereavement of widows. It
would appear that a greater differentiation by gender is called for in

exploring patterns of bereavement, which would facilitate an under¬
standing of findings that show differences between the adjustment of
widow/ers whose spouses have died of cancer.
The present study also shows age to be positively correlated with
distress and especially with grief, thereby supporting the second
hypothesis, namely, older survivors are more distressed and show
more grief than younger ones. More broadly, older adults tend to be
depressed generally in comparison with younger adults, with physical
limitations and geriatric problems increasing with age (Ferrell & Ferrell,
1998). This finding differs from studies that indicate that symptoms of
depression are more apparent among young widows and widowers
than among elders (Zisook et al., 1987; Hays et al., 1994; Nolen-Hoek-
sema & Larson, 1999) or from research which shows no effect of age on
amount of depression (Turvey et al., 1999). However, the loss of a long¬
term bond, together with the absence of social and physical resources
characteristic of old age that are important when coping with stress
(Moos & Schaefer, 1993) may explain the present findings.
Certain illness variables were also correlated with distress. Thus,
while death at home or in a hospital did not affect distress or grief, the
longer the patient was bedridden, the greater the distress and grief
observed in the spouse, as hypothesized. Watching one’s ill spouse’s
condition deteriorating for a long period without being able to help or
cure the ill spouse appears to affect the surviving spouse during the
bereavement process. As hypothesized, grief was correlated with dis¬
tress and psychosocial problems.
The study did not, however, show significant effects on bereave¬
ment of patient-spouse communication, thereby disproving the fourth
hypothesis. This finding supports previous research (Vachon et al.,
1977; Hinton, 1981), but differs from other studies (Cohen et al., 1977;
Worby & Babineau, 1974). Better communication can reduce grief and
distress because of the closeness and greater understanding between
patient and spouse. By the same token, however, better communication
can lead to greater distress on the part of the caregiver, who is thus
exposed to the patient’s inner feelings of fear and despair. Conceiv¬
ably, these two opposing effects of communication can neutralize each
other, showing no effects in the analysis.
The model testing the overall relationships between resources, ill¬
ness, and demographic variables shows that gender, age, and past grief
contribute to present grief and distress. The processes that the surviv¬
ing spouse undergoes during the last days, weeks, or months of the
dying spouse seem to affect the surviving spouse’s mental state for
months after the death of the ill spouse. This conclusion is supported
by a recent study (Kelly et al., 1999) which showed that psychological
symptom scores measured a short time before patients’ death predict¬
ed severity of caregiver grief.
An important, albeit anticipated, finding is that both the widow’s
and the widower’s psychological distress, as measured by BSI, was
higher than the Israeli norm and higher than the average for different
populations such as elderly spouses (Gilbar, 1999), spouses of breast
cancer patients (Ben-Zur et al., 2001), and spouses of gynaecological
cancer patients (Gilbar et ah, 1995). In other words, losing one’s life
partner is the most stressful situation in a spouse’s life.
The present study shows that widowhood as a result of death from
cancer is characterized by high levels of distress. It also shows that gen¬
der and age are significant factors in distress and grief. These data are
important in designing intervention programs for cancer caregivers
whose spouse is dying, which may assist the caregiver during the
patient’s last days. The data also suggest that widows as a group, as
well as elderly widows and widowers, are especially vulnerable to a
high level of grief and distress and may require professional support
following the death of a spouse from cancer.
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'
Part Three
PRACTICAL ISSUES
Chapter 8
PSYCHOSOCIAL INTERVENTION FOR

REDUCING CAREGIVER DISTRESS
INTRODUCTION
T he literature related to caregiver distress models and findings that

discuss caregiver strain variables emphasize the importance of
intervention programs for reducing the distress of the caregiver. Such
intervention is valuable not only because a high level of distress may
cause caregiver burnout, but also because of the possible negative effect
of such distress on the immune system, which may result in health
problems (Sarafino, 1998). While the literature describes various types
of psychosocial interventions for chronic and terminal patients—brief
crisis counseling, psychoeducation intervention, adjuvant psychology
therapy (APT), group therapy, cognitive behavioral intervention, and
psychodynamic psychotherapy (Fawzy & Fawzy, 1998; Jacobsen &
Hann, 1998; Lascalza & Brintzenhofeszoc, 1998; Moorey & Greer,
1989; Fawzy et al., 1995; Postone, 1998; Spira, 1998; Straker, 1998)—
few programs focus on caregivers of cancer patients.
At first glance, there may not seem to be a need for a special inter¬
vention program for caregivers because the caregiver, especially if the
caregiver is the spouse, may be involved in the patient’s intervention
sessions. The cancer patient’s spouse may even act as a cotherapist in
the intervention program (Moorey & Greer, 1989). However, while
such sessions involving the patient together with the family are impor¬
tant, separate caregiving needs must also be considered in planning
psychosocial intervention in the case of cancer caregivers. Such needs
include changes in the caregiver’s lifestyle, complex medical responsi-
213
bilities, and painful feelings regarding the possibility of losing the loved
relative. The psycho-oncologist can promote coping strategies for the
caregiver, as well as for the rest of the family, which aim at decreasing
ambiguity, developing trust in the medical professionals, fostering sta¬
bility in the family environment, helping to maintain control, and pro¬
viding hope and a sense of future (Martocchio, 1985).
This chapter describes family caregiver intervention programs in
the context of cancer patients as discussed in the literature and as devel¬
oped through the authors’ clinical experience.
A Comparison Between Caregiver Intervention and

Family Therapy
Because cancer, as other chronic illnesses, is perceived as a family

matter, one of the methods of reducing family caregiver distress is fam¬
ily therapy based on a system approach (Patterson & Garwick, 1994;
Jacobs et al., 1998). The family system model is dynamic in nature in
that it views families as organized around two major forces-a morpho¬
genetic (developmental) force, reflected in the universal tendencies of
families to become organizationally more complex over time; and a
morphostatic (regulatory) force, reflected in the capacity of families to
maintain stability, order, and internal constancy. Although families are
thought to be responsive to both these forces, morphostatic mecha¬
nisms, in performing a regulatory function, tend to balance and shape
the weight and direction of morphogenetic (growth) characteristics
(Jacobs et al., 1998). However, when challenged by a serious medical
illness, most families react by trying to gain mastery over the situation
and adapting to it (a morphogenetic trait).
In such a situation, family therapy, which is based on a dynamic
approach to the balance of the forces in a family, and which may
reawaken previous struggles and conflicts, may not be the preferable
treatment, whether for the family that must cope with cancer or, espe¬
cially, for the caregiver (primary or secondary). Supportive interven¬
tion may be a more effective therapy for both the cancer patient and
the caregiver. Such intervention focuses on helping the caregiver
expand and adapt the caregiver’s successful problem-solving methods
to the demands of the cancer episode. Family therapy may not be
worthwhile even in the case of a family that was dysfunctional prior to
the diagnosis of cancer, especially in the diagnosis and treatment phas-
Psychosocial Intervention for Reducing Caregiver Distress 215
es when immediate help is needed to reduce the high level of stress

experienced by the family, and when the help of the family often con¬
stitutes the patient’s main source of support. The demands of family
therapy could actually become stressors during the acute phase of the
illness, evoking intrusive hostilities from unresolved conflicts that wors¬
en the emotional state of the family, and especially of the caregiver,
who is under the greatest role strain.
Family caregiver intervention, by comparison, is tailored to the
caregiver’s special needs, as, for example, the needs of the caregiver
who is the parent of an adult patient, or who is the adult child of an eld¬
erly patient. Often the caregiver does not feel free to share the distress
of personal strain with the patient, even if the patient is the spouse: the
caregiver fears that the patient will misinterpret the caregiver’s com¬
plaints about strain, thereby exacerbating the guilt already felt by the
patient as a result of the burden imposed by the illness.
A family caregiver intervention program of eight to twelve sessions
based mainly on crisis counseling, as developed by the authors (see
model later), should be offered to every family dealing with cancer.
When the primary caregiver is the spouse, most of the sessions should
be conducted together with the patient so as to fill the couple’s need to
share and understand each other’s feelings. One session should be held
with all the members of the family together, and one to three separate
sessions should be devoted to the caregiver with patient confirmation.
Intervention Programs for Caregivers of

Chronically Ill Persons
Formal intervention programs for caregivers of ill persons have

been implemented by clinicians since the 1980s, yet only recently have
they been studied systematically (Dunkin & Anderson-Hanley, 1998;
Zarit et al., 1998). Few studies, however, have compared control and
experimental groups, and even fewer have used true randomized
designs (Voelkl, 1998; Cary & Dua, 1999; Chang, 1999; Zhao et al.,
1999; literature review in Servaes et al., 1999). Most intervention pro¬
grams discussed in the literature have been developed for caregivers of
dementia patients. These programs focus on the education of the fam¬
ily, with the assistance of a physician, about the particular illness of
their relative. Caregivers also receive information about available
resources in their community, such as legal-planning advice, day care
and respite services, and guidance in using management strategies for

behavioral problems such as communication skills and care manage¬
ment (Whidatch et al., 1991; Cary & Dua, 1999; Chang, 1999).
The development of service programs for the elderly, for dementia
patients, or for adults with chronic disabilities is vital in helping the
family caregiver cope with the stress situation—by giving the caregiver
time to rest or attend to other responsibilities (Zarit et al., 1998). Spe¬
cific programs that have been studied include network therapy (Cohen
et al., 1998); a series of classes for caregivers of dementia patients offer¬
ing an overview of dementia and guidance in communication with and
management of difficult behaviors common in dementia (Prosch &
Hewett, 1999); occupational therapy (Miller & Butin, 2000); sharing
daily patient activities with the caregivers (Voelkl, 1998); and telecom¬
munication interventions for caregivers of elders with dementia
(Wright et al., 1998).
Several studies have informally evaluated these programs. Glosser
and Wexler (1985) reported that 64% of a sample of relatives of patients
with Alzheimer’s disease and other types of dementia found that con¬
tact with family members and the opportunity to express feelings,
receive support, and learn from each other were the most beneficial
aspects of the support group. In another informal evaluation, partici¬
pants reported that they no longer felt alone and that they were better
able to communicate with the elderly relative they were caring for
(Richards, 1986). Hardy and Riffle (1993) found that sharing feelings
and acquiring a sense of affiliation with and support from others were
the most beneficial aspects of participation in the program.
Reports in the literature of formal evaluations of caregiver support
programs have been minimal (Toseland et al., 1992; Gallagher &
Hagen, 1996; Oktay et al., 1988). In a single blind, randomized control
group design, Toseland et al. (1992) found that caregivers reported less
burden and stress and used more active behavioral coping strategies
and community resources after attending a support group. Gallagher
and Hagen (1996) found a significant increase in social support after a
ten-week group education and support program. Kaasalainen et al.
(2000) reported a significant increase in information scores in a com¬
parison between pretest and posttest in an intervention group (rc=23).
Caregivers in the intervention group reported that the Caring for
Aging Relatives Group (CARG) program provided them with social
support. A comparison of the effectiveness of two active interventions
in a waiting list with the aim of reducing depression and burden and
increasing use of adaptive coping strategies in 161 family caregivers of
physically and cognitively impaired older adults was assessed by Gal-
lagher-Thompson et al. (2000). A chi-square analysis of change in
depression status from pre- to postintervention showed a higher per¬
centage of improvement among participants in the increasing life satis¬
faction psychoeducational condition as compared to the improvement
rate in either the problem-solving psychoeducational class or the wait¬
list condition.
By contrast, findings in a study by Roberts et al. (1999) indicate no
improvement in psychosocial adjustment to the patient’s illness, psy¬
chological distress, or burden by most caregivers of cognitively
impaired relatives after receiving individual problem-solving counsel-
ing. Counseling, however, was found to be helpful and effective for a
subgroup of these caregivers: those with poor coping skills at baseline
had decreased psychological distress and improved psychosocial
adjustment after a year in a caregiver support program.
In summary, intervention programs for caregivers of the chronical¬
ly ill are geared to the caregivers’ special needs, which differ from those
of the patient, and have been shown to be beneficial.
Intervention Programs for Caregivers of Cancer Patients
Of the small number of studies of intervention programs for family

caregivers in the case of cancer, only a few assess the impact of inter¬
vention on reducing sense of stress (Meyer & Mark, 1995). Most extant
intervention programs are designed for both family members and
patients (Walsh-Burke, 1992; Carter & Carter, 1994; Watson, 1994;
Bressi et al., 1997; Counselman, 1997; Motzer et al., 1997; Cunningham
et al., 1999; Kissan, 2000). One study (Blanchard et al., 1996), compar¬
ing the effect of a coping-with-cancer (CWC) intervention program for
spouses vis-a-vis other support services offered to spouses of cancer
patients, found that patients whose spouses attended the CWC program
were significantly less depressed than patients whose spouses did not.
Generally, the programs are supportive, focusing on communica¬
tion skills but with little attention to specific caregiver needs relevant to
stage in the life cycle-a major factor determining the caregiver’s abili¬
ty to function over time (Northouse & Peters-Golden, 1993; Veach &
Nicholas, 1998). The guidelines for the practitioner outlined next
address the complex challenge of helping cancer caregivers deal with

all aspects of their role.
FAMILY CAREGIVER INTERVENTION IN THE VARIOUS

PHASES OF THE ILLNESS
Cancer, as described in Chapter 2, involves five phases of the ill¬

ness process: diagnosis, medical treatment, follow-up, recurrence, and
terminal. Each phase is typified by various types of stressors arising
from the medical condition. Caregiving, therefore, has different foci in
each phase of the illness.
Diagnosis Phase
A primary caregiver task in this phase, besides support of the

patient, is helping the patient make the best medical decisions. The
therapist must focus, in the patient-caregiver sessions, on assessing the
caregiver’s understanding of the diagnosis and whether the caregiver is
making realistic plans for the treatment phase. For a young family, this
will involve planning for the care of children during the patient’s hos¬
pitalization and immediately after discharge following surgery. For the
son/daughter of an adult parent, the issue may be coping with multiple
roles. The therapist must also explore whether the caregiver has a
social support network that will help the caregiver adjust to the cancer
diagnosis and cope with this new development. This is especially
important when the caregiver is the spouse, as the caregiver has lost the
primary support resource. Caregiver intervention in this phase focuses
on supplying medical information and conveying an understanding of
how to navigate in the medical system; instrumental problem solving
arising from the diagnosis; and support of the caregiver in personal ini¬
tial emotional response to the diagnosis, which may be denial, anger,
and guilt.
Medical Treatment Phase
The caregiver must deal in this phase with new stresses arising from
medical treatment-surgery, chemotherapy, or radiotherapy (Knobf et
al., 1998). Multiple tasks demanded by the treatment schedule include

providing or arranging for transportation to and from the treatment
center, monitoring oral medication, preparing special diets, and so
forth. The therapist should assess whether communication between the
family caregiver and the medical staff is effective, and if the caregiver
is adequately prepared to deal with possible acute side effects of the
medical treatment. The therapist must also ascertain whether the care¬
giver appears to be coping successfully with the disruption in the care¬
giver’s routine engendered by the treatments. Specifically, an
assessment should be made as to whether the caregiver is managing to
cope with the role strain that inevitably develops as a result of the mul¬
tiple roles demanded by this phase.
Family caregiver intervention should focus both on the provision of
medical information and on disability management-by reinforcing
problem-solving techniques and behavioral coping strategies. In this
phase, one to three separate sessions with the caregiver are important
in order to deal with the personal need to protect the patient from
intrusive thoughts, sadness, and emotional pain. In addition, these ses¬
sions should deal with the shifting of authority and responsibility from
the patient to the caregiver, on the one hand, and on the other, the
effect this will have on the caregiver’s other roles in life-as employee,
parent, spouse, and adult child.
Follow-Up Phase
Caregivers are often unprepared for the difficulties involved in this

phase. The most difficult time is the transition from acute treatment to
the chronic posttreatment phase, although both patient and family
caregiver look forward to this phase (Knobf et al., 1998). To a great
extent, the caregiver anticipates a resumption of life as it was before the
diagnosis. Yet, the caregiver discovers that reverting to previous roles
and responsibilities is difficult. A caregiver who had been passive in the
financial management of the family before the diagnosis may have
acquired a new sense of self-worth and may be reluctant to relinquish
this responsibility. An adult child caregiver to a parent may feel more
useful in exerting greater control over the parent’s life and may resist
the notion that the parent is capable of personal management once
again. Alternatively, the patient may lack the self-confidence or emo¬
tional resources to resume tasks that the caregiver would be glad to
relinquish. In short, the reversion to nonillness activities, routines, pri¬

orities, and goals is a reorganization task that demands flexibility and
accommodation to the changing demands characteristic of cancer. At
the same time, this process occurs in the shadow of the threat of a
recurrence of the disease or of delayed complications resulting from
treatment, which is an ongoing destabilizing factor.
The therapist must assess whether the caregiver understands the
proper posttreatment management of the patient’s health, is ready for
release from the support of the medical staff, and is able to reshape
family roles. In this phase, again, one to three separate counseling ses¬
sions are needed. Besides problem solving, the caregiver intervention
approach focuses on support, emotional control techniques, and cog¬
nitive-behavioral methods to combat the stress engendered by the dis¬
ease.
Recurrence Phase
One of the most stressful situations for the family, and especially for
the primary caregiver, is the recurrence phase. Once again, the care¬
giver must manage the outcomes of aggressive medical treatment. The
physical symptoms of the illness and the reaction to the treatment
engender a higher level of patient disability and greater dependency in
daily activity. This intensifies the caregiver’s involvement in the care¬
giving process and may affect the caregiver’s life for long periods with
few intervals, often resulting in a sense of burden and symptoms of
burnout.
However, the primary element that the caregiver, like the patient,
must deal with in this phase is the looming survival time limit, often
accompanied by experimental medical treatment (Stetz, 1993). The
hope felt in the initial phase of the illness changes to a sense of hope¬
lessness and helplessness. In light of the unknown future, the caregiver
feels that negative feelings must be controlled in order to protect the
rest of the family from emotional pain. Often, the caregiver also tries to
hide the exact medical situation from the patient in order to give the
patient some hope. The therapist in this phase must also assess whether
the caregiver has the capability to deal with the practical problems aris¬
ing from the progression of the illness, as well as whether there is an
available support network to enable the caregiver to share personal
feelings.
The family caregiver intervention program should devote one to

three separate sessions to help the caregiver reorganize the patient’s
lifestyle in line with the medical treatment schedule, as well as maintain
a structured daily routine to the extent possible, especially in families
with children. In addition to problem solving, support, and the supply
of medical information, the intervention must offer disability manage¬
ment and existential/death counseling, as well as reinforce emotional
control techniques and cognitive-behavioral methods.
Terminal Phase
One of the demanding problems that the caregiver must deal with
in this phase is the patient’s total dependence for daily functioning:
bathing, dressing, toileting, walking, eating, and so forth. Often, more¬
over, the progression of the illness also involves a high level of pain,
breathlessness, constipation, fatigue, and weakness (see Chapter 2).
Most of these symptoms can be only partially controlled. The cumula¬
tive result is that the caregiver often feels helplessness, guilt, hopeless¬
ness, and anger, feelings that contribute to the caregiver’s sense of
burden.
Ultimately, the most difficult aspect for the caregiver, who in most
cases is a member of the family, is the awareness of the impending loss
of the loved one. The needs of the living and the dying are inherently
in conflict, thus setting the stage for difficulties in adjustment and com¬
munication. The living need to maintain their resources and perform
their daily activities, while the dying drain these resources and pull
family members away from their usual roles.
The therapist, therefore, must assess whether there are additional
family members besides the primary caregiver who can help in caring;
if there are economic resources for hiring lay help; and if the caregiv¬
er is aware of community services that might provide assistance. In
addition, the therapist should clarify whether the caregiver and the
patient have said goodbye to each other. Often, they want to do so but
are unable to find the words.
While the practical issues should be discussed with the caregiver
separately, communication regarding the impending death ideally
ought to take place together with the patient. Sometimes family diffi¬
culties may stem from long-standing personal conflicts over issues or
events that occurred years previously. The therapist can help the fam-
ily put such issues behind them or at least put them aside so that they
do not interfere with the positive outcomes that can come from family
intervention. Difficulties in communication may also be tied specifical¬
ly to the dying process. The patient may feel guilty for draining the
finances, time, and emotional energies of the family yet may not know
how to express these concerns. Family members, in turn, may feel that
they are not spending enough time with the patient or are not respond¬
ing in the right way to the patient’s concerns. Often, simply expressing
these problems is helpful, even if they cannot be solved.
Family caregiver intervention can also help in cases where the fam¬
ily and the patient are not in tandem in their adjustment to the illness.
Members of the family may still hold out hope for a cure, or may urge
seeking additional treatment, when the patient may already be
resigned to dying; or, the family may need to share their feelings with
the patient precisely at a time when the patient is hostile and with¬
drawn. Because caregiver family intervention uses a supportive prob¬
lem-solving approach, the focus is on helping the family member
understand that the patient’s response to the situation is normal, while
emphasizing the importance of existential/death counseling. The ther¬
apist can thus also have a lasting impact by helping the survivors move
past the crisis of death relatively free of guilt feelings and unresolved
issues.
The therapist may also help the caregiver with the painful decision
regarding preferable venue of death. The caregiver may feel guilty in
making a decision to hospitalize the patient at the end, especially when
the patient would prefer to die at home. Yet often, the caregiver is strug¬
gling with the disruption to the caregiver’s own life caused by the inten¬
sification of the caregiving. A married child of an ill parent may feel
that personal caregiving causes conflict in the child’s own family or is
a threat to personal employment. A spouse caregiver with small chil¬
dren may experience a high level of strain in caring for the spouse at
home while trying to maintain a normal life for the children. The issue
of preferable place of death, therefore, should be considered carefully
with the caregiver, as it is one of the main factors affecting the bereave¬
ment process.
A PROBLEM-SOLVING INTERVENTION MODEL OF

CAREGIVING TRAINING
Family caregiver intervention in each phase of cancer, as described

earlier, is based on the problem-solving training model. An effective
adjusted model of problem-solving intervention for the caregiver of
cancer patients (Nezu et ah, 1998) focuses on imparting an under¬
standing of, and information about, the biological and psychological
processes involved in the illness. This is conveyed at a level appropri¬
ate to the caregiver’s background and education. Discussions are held
on caregiving problems, possible solutions, and realistic goals in deal¬
ing with problems. Guidance includes knowing when to get profes¬
sional help, calling immediately in an emergency situation, calling
during office hours, calling on other family caregivers for help in deal¬
ing with and preventing problems, filtering out misinformation that can
interfere with carrying out medical instructions, carrying out and
adjusting the medical plan, gauging the time required for change, and
what to do if the plan is not working.
Problem solving, according to this model (Nezu et al., 1998), has
four major components, summarized by the acronym C.O.P.E.: cre¬
ativity, optimism, planning, and expert information. The creative com¬
ponent lies in finding a suitable solution for the problem—viewing the
problem from new perspectives, which helps block negative thought
patterns and supports expectations that the problem will be solved.
The optimism component refers to orienting attitudes and expectations
regarding problems and sustaining the motivation to carry out prob¬
lem-solving steps. Setting realistic goals is a key element in maintaining
optimism, as this focuses attention on goals that are achievable with
reasonable effort and thus justifies positive expectations. Planning is
the central component of problem solving. Although the planning of
medical treatment is done largely by health care professionals in con¬
sultation with the patient, both family and patient must develop their
own plans for carrying out medical instructions and for dealing with
the psychosocial problems related to the illness. These plans include
acquiring rational problem-solving skills such as obtaining complete
information, separating facts from conjecture, specifying who will do
what and when, and carrying out and monitoring the plan. The expert
information component includes obtaining guidance from health care
professionals in dealing with physical and psychosocial problems that

stem from cancer and its treatment. Expert information empowers both
patients and family caregivers by enabling them to develop effective
plans for solving problems related to the illness.
Another model (Houts et al., 1994) provides an instruction manual
for the caregiver, a videotape, and a copy of a Home Care Guide for Can¬
cer. The guide includes expert information for solving twenty-one com¬
mon problems related to caring for a cancer patient (e.g., fatigue, fever,
communication, depression, etc.).
Support-Group Model for the Caregiver
One of the most widespread types of intervention for reducing dis¬

tress-group intervention—has proven effective in reducing cancer
patients’ distress, as described in the extant literature (e.g., Spira, 1998;
Blake-Mortimer et al., 1999). Only a few such studies, however,
describe group intervention models for caregivers of cancer patients.
One of these, the adjusted group intervention model, explored previ¬
ously by one of the authors (Gilbar, 1997), is based on crisis interven¬
tion (Aguilera & Messicki, 1982). The participants meet with the
therapist for eight l?-hour weekly sessions, gaining an understanding of
each other’s stress situations and receiving guidance in developing cop¬
ing skills to deal with the patient’s illness. The program is designed as
follows:
First Session
Subject: Getting Acquainted. The therapist outlines the goals of each of the
sessions, announces the dates and length of the meetings, and empha¬
sizes the importance of attending every session. The participants are
then asked to introduce themselves. Most choose to begin with the dis¬
covery of the illness. The descriptions are detailed and are presented
emotionally. The participants’ need to inform the group of all the par¬
ticulars of the illness sometimes leads to impatience among the listen¬
ers, who begin to chat among themselves. The therapist, however,
allows each participant complete freedom of expression, thereby pro¬
moting an atmosphere of acceptance and support. At the close of the
Psychosocial Intervention for Reducing Caregiver Distress 22 5
meeting, the therapist stresses that the goal is the acquisition of impor¬
tant coping skills through learning from one another’s experiences.
Second Session
Subject: Initial Reaction to Spouse’s Surgery. The participants are asked to

focus on the patient’s surgery. Their descriptions frequently include
expressions of anger, most often attributed by them to the impersonal
attitude of the medical team at the hospital—complaints that the team
often ignored them. As the meeting proceeds, the therapist raises the
possibility that the source of the anger lies elsewhere—the outrage that
their fate was to be victimized by cancer. The therapist legitimizes these
feelings of anger and explains that the sense of helplessness accompa¬
nying cancer is often no less difficult than the treatment itself.
Third Session
Subject: Medical Information. During the first and second sessions, med¬
ical questions about cancer and cancer treatment are usually asked by
the participants. They realize that some of the medical information
they have is incorrect, and this adds to their fears. An oncologist, there¬
fore, is present at this session. The questions are varied, ranging from:
Is cancer contagious? Hereditary? to: What disabilities arise as a result
of the surgery? The doctor’s replies are clear and detailed, with an
emphasis on the positive aspects of medical treatment of the illness.
Fourth and Fifth Sessions
Subject: Emotional Responses to the Diagnosis. The participants are asked to

select a slip of paper from a pile of papers, each of which is labeled with
a particular emotion: depression, guilt, anger, shock, shame, fear, and
so forth. The participant may also select a blank slip instead. Each par¬
ticipant is asked to describe individual feelings in relation to the word
on the slip. Most of the participants tend to choose the slip marked
“depression” and express their feelings of sadness, loss of appetite,
sleep disturbance, loss of energy, and so forth. The therapist states that
it is normal for the diagnosis of cancer to cause such feelings among
members of the family. But sometimes, the therapist points out, this
difficult experience elicits positive manifestations, such as family sup¬

port and a rediscovered sense of family closeness.
In the next session, the participants are asked to choose a slip with
a word that describes an emotion appropriate for the ill patient, such as
depression, guilt, anger, shock, shame, and so forth. As the meeting
progresses, the participants come to understand that cancer is a family
issue. The discussion leads to an awareness of the importance of shar¬
ing feelings and difficulties with family members in order to gain sup¬
port, and an understanding that this is the meaning of having family.
The therapist encourages the participants to talk about interrelation¬
ships in their families with the aim of creating a sense of warmth and
intimacy that is important in the process of coping with the illness. At
the end of the fifth meeting, the therapist discusses extant knowledge
about the emotional responses of cancer patients and their families on
being informed of the diagnosis of the illness, based on the Kiibler-
Ross (1975) five-stage theory, namely, denial, anger, bargaining,
depression, and acceptance.
Sixth Session
Subject: Role Strain. The therapist discusses the stressors involved in care¬
giving. Most participants tend to express their feelings about the change
in roles required by the caregiving situation and about the emotional
strain engendered by their sense of helplessness regarding their relative’s
medical condition even though they do everything they can to ease the
patient’s physical and emotional symptoms. Other stressors include time
demands and financial strain. Feelings of guilt are also discussed in the
context of the caregivers continuing with their normal lives and some¬
times even enjoying themselves, such as occasions when they attend an
event with singing and dancing or go on a trip. They are concerned
about how they can be joyful when their ill relative cannot and is left
alone. They emphasize, however, that such activities have a great impact
on reducing their personal distress. The therapist, in turn, emphasizes
that the patient’s well-being depends directly on the caregiver’s well¬
being, so that it is important that they continue their social activities.
The discussion also covers the importance of getting help from
other family members or friends in order to reduce the intensity of the
caregiver’s role conflict that often results from the patient’s needs. Hus¬
bands of female patients should be encouraged to help with household
duties. Parents, siblings, offspring and, if possible, paid caretakers

should be enlisted to assist the primary caregiver. At the end of the ses¬
sion, the therapist conveys information about community medical and
social services that can be helpful in the caregiving process.
Seventh Session
Subject: Setting Goals. The therapist discusses the advantages of estab¬

lishing new and changing goals in coping with the relative’s illness. The
participants are then asked to state their preferred goals. They are also
asked to articulate what they desire from life and what they would make
every effort to achieve, even when they are old. Such a statement is a
way of translating emotional and physical needs into a pattern of behav¬
ior that affirms and actively renews life. Typically, some participants
express opposition to setting goals, possibly because they doubt their
ability to achieve them and fear failure, or because they feel there is no
point in setting goals, as they do not believe their partner or loved one
will live long enough to realize them. The therapist explains that setting
long- and short-term goals is important because it helps bring the rea¬
sons for living into focus and reestablishes the link with life.
Eighth Session
Subject: Summing Up and Dispersing. The therapist asks each member to

recall personal feelings throughout the course of the sessions and at the
conclusion. Often, the participants observe that the discussions have
afforded them great comfort both by virtue of the medical and psy¬
chological information they have acquired and by the sense of com¬
munity and shared fate. They also note the great benefit in involving
each other in day-to-day problems and in finding solutions to them
together. The therapist sums up the therapist’s role and emphasizes that
the therapy team is available to help with questions or problems that
may arise in the future.
Conclusions
The group sessions may serve as an outlet for pent-up emotions as

well as a context for promoting mutual support. The discovery by the
caregiver that the caregiver is not alone significantly alleviates emo¬

tional pain. The participants have provided mutual support and offered
each other concrete solutions to the various day-to-day problems
despite differences in reactions to the diagnosis, medical treatments,
and many of the problems that arise.
INTERVENTION PROGRAM FOR THE BEREAVED

CAREGIVER: COUNSELING AND THERAPY
The extant literature on caregiver models discusses the psycholog¬

ical response to the loss of a loved one in detail. According to these
models, individuals pass through four stages, or phases, of mourning as
they attempt to come to terms with a major loss: shock, searching,
depression and reorganization, and recovery (Worden, 1991; Little-
wood, 1992; Wortman et al., 1993). When death is expected, as in can¬
cer, the bereavement process and the separation from the loved one
usually begin even before the death (Bass & Bowman, 1990), prompt¬
ing the development of preventive bereavement programs (e.g.,
Kissan, 2000; Raveis, 2000).
Kissan (2000) suggests a model of intervention for palliative care
focused on family grief therapy (FGT)—having as an objective
improved family adjustment during the terminal phase and thus
reduced bereavement morbidity. The model is time limited, brief, and
focused. It traces the story of the illness, family functioning, and
genogram processes through five treatment phases: assessment; agree¬
ment about unresolved concerns or issues; focused treatment of grief,
problem solving, conflict resolution, and consolidation; affirmation of
change in family functioning; and termination with future orientation.
Although the literature covers various types of bereavement coun¬
seling and therapy for the individual who loses a loved one, few stud¬
ies evaluate the effectiveness of such interventions in the bereavement
process or in the prevention of pathological grief. One such study
(Mawson et al., 1981) indicates that individual bereavement therapy
alleviates grief symptoms [rv=Y2) by comparing findings on distress six
months after bereaved persons had received therapy (significantly bet¬
ter) and persons who did not have therapy. Another study (Reich &
Zautra, 1989), however, found no significant differences between
experimental and control groups one month after treatment. Research

(Schut et al., 1997) describing emotion-focused versus problem-focused
intervention programs for twenty-three widows and widowers (aged
sixty-five-or-less years) with elevated levels of distress eleven months
after their loss indicated that widowers benefitted more from emotion-
focused intervention and widows from problem-focused intervention.
In the area of the effectiveness of group therapy, Constantino (1981)
found a significant decrease in depression and increased socialization
in widows in a group program. Sabatini (1988), by contrast, found no
significant differences between crisis intervention and control groups in
symptoms of grief. Similarly, Lieberman and Yalom (1992) report
improved role functioning and psychological state a year after
bereavement both for a group of spouses who participated in brief
group psychotherapy and a group who did not. Similar findings (Caser-
ta & Lund, 1993) for 295 recently bereaved older adults assessing
intrapersonal resources (self-esteem, competencies, and life satisfaction)
vis-a-vis the effectiveness of self-help groups indicated that although
intrapersonal resources had a greater influence on outcomes than par¬
ticipation in a self-help intervention group, depression decreased
among those with high competencies who continued to attend self-help
group meetings for more than eight weeks.
Bereavement counseling is helpful to some people in resolving feel¬
ings about a loss that delays their ability to complete grief tasks and
thus resume a normal life. Counseling is more necessary when the
bereaved is the caregiver who must assume multiple roles dictated by
stage in the life cycle. Examples are a young widow who must deal
simultaneously with economic problems stemming from her husband’s
death, her children’s emotional reactions to the death of their father,
and her own emotional pain; a young widower who must deal with his
feelings as well as household, parenting, and employment responsibil¬
ities; or an elderly widower who must manage his household on his
own at the same time as dealing with his own health problems.
Bereavement counseling for the caregiver of the cancer patient by
professionals or volunteers is often part of home-care hospice programs
(Wilker & Lowell, 1996; Murphy et al., 1997) and is utilized by a major¬
ity of caregivers linked to such programs. Abnormal or complex reac¬
tions to bereavement generally result in a referral for counseling at a
psychiatric clinic. The question of who requires bereavement counsel¬
ing, however, has evoked differing approaches (Worden, 1991). One
opinion is that counseling should be offered to everyone, and particu¬

larly to families in which death has taken a young parent or child, on
the premise that death is a traumatic event for everyone involved.
Another approach is that some people need help with the bereavement
process but wait until they get into difficulty and then recognize their
need for help by themselves. A third approach is based on a preventive
model: immediate targeting of variables such as lower social class, an
absence of current relationships, or young children at home who are
likely to have difficulty a year or two following the loss of a parent, and
offering them counseling that may prevent pathological grief.
Bereavement Counseling
Bereavement counseling is defined as helping people facilitate

uncomplicated, or normal, grief as a healthy completion of the tasks of
bereavement within a reasonable time frame. The main goals of such
counseling are to heighten the reality of the loss, help the counselee
deal with both expressed and latent effects, help the counselee over¬
come various impediments to readjustment after the loss, and encour¬
age the counselee to say an appropriate goodbye and feel comfortable
reinvesting back into life (Worden, 1991; Raphael et al., 1993; Free¬
man & Ward, 1998). Findings by Beem et al. (1999) indicate that brief
counseling for widows has a beneficial impact not only on psychologi¬
cal distress but on the immunological system as well.
A series of predictable concerns recur among families receiving
counseling. These include the delivery of instrumental care; the emo¬
tional challenge of suffering; altered access and intimacy; the process of
farewell: the experience of death; cultural and religious practice; needs
of particular family members, including children; historical influences
on the family (other losses); and the final pain of separation. Dealing
with these feelings stimulates a healthy prebereavement process.
Differences between the counseling-program approaches described
in the literature are minimal and are related mainly to type of death-
sudden vis-a-vis expected (Abi-Hashem, 1999). Counseling the
bereaved person focuses on assessing the relationship with the
deceased, social support, stressors not related to the death, personal
background, and family variables. The therapist asks such questions as
Can you tell about the deceased? Can you tell about the death? Can
you tell about how others have responded to you since? What did they
say and do? What did it mean to you? Can you tell about other things
that happened to you or are happening now? Can you tell about your¬
self as a person and about your life before all this happened? Can you
tell about other family members and how this affected them?
The therapist establishes a relationship with the bereaved person or
family in the initial phase of the counseling process. The therapeutic
contract is also defined at this time—the role of each party, expected
duration and number of sessions, appointment hours, compliance with
counseling “homework,” and a certain amount of mutual agreement
about general goals and purposes.
The therapist then explores the loss: the circumstances of the death,
its reality to the bereaved, and personal and social support. At the same
time, the therapist supports and encourages the bereaved person in the
“natural” release of effects related to the loss. The next step is a review
of the lost relationship. The bereaved is encouraged to discuss the rela¬
tionship: how it started, its rewarding and its painful aspects, patterns
and nature of interaction, the roles each filled, areas of needs, and
themes of gratification. The idealization of the deceased that often
occurs needs careful testing so that the negative feelings underlying it
can be faced and dealt with. Feelings of guilt may also require working
through, especially if they are related to damaging, rejecting, or neg¬
lectful behavior in the past relationship.
In addition, the therapist explores background issues related to the
life experiences of the bereaved, such as other losses and stresses of an
acute or chronic nature; sociodemographic factors; family and cultural
issues; and the relevant past, such as family and personal history with
an emphasis on responses to past stresses and losses. This review helps
reveal elements contributing to difficulties in dealing with the loss,
which can then be addressed in order to mitigate any negative influ¬
ence that may interfere with the capability of the bereaved to adjust to
the loss. Clearly, the main role of the therapist throughout the grief
process is to provide support. The therapist needs to encourage mourn¬
ing processes and to assist the bereaved in dealing with any perceived
obstacle in his or her social network.
Bereavement Therapy
An important role of the bereavement counselor is to identify the

presence of pathological grief. This may occur in high-risk populations,
such as young women with small children at home, lower social class,
absence of social support, previously ambivalent relationship with the
deceased, or high level of guilt feelings (Arkin et al., 1975; Raphael et
al., 1993). Several theoretical approaches have been developed to the
question of pathological grief. A discussion of the two most influential
perspectives—psychoanalytic theories and attachment theories—follows.
Psychoanalytic Theories of Pathological Grief
Many conceptions of grief owe their origins to Freud (1917). Com¬

paring mourning and melancholia (grief and clinical depression), Freud
pointed to the feature that they have in common: a reaction to loss.
This results in a depressed mood, loss of interest, and the inhibition of
activity. He believed that healthy grief differed from depression in the
absence of guilt, self-reproach, and lowered self-esteem, although today
evidence indicates that healthy grief also contains elements of self-
reproach and low self-esteem.
Psychoanalytic theory (Freud, 1917) postulates that love for anoth¬
er person is the outcome of the attachment (cathexis) of libidinal ener¬
gy to the mental representation of the loved individual (the object).
When a loved person dies, libidinal energy still remains attached to
thoughts and memories of the deceased. Freud proposed detaching this
energy through a process he termed “hypercathexis,” a struggle to
“decathect” the loved object through the investment of additional free
energy. This requires grief work—a freeing of ties to the deceased by
reviewing the past and dwelling on memories of the departed. Grief
work comes to a successful conclusion when most of the libido is with¬
drawn from the lost object and transferred to a new one.
Freud’s notion that “working through” grief is essential for prevent¬
ing pathology has had an enduring influence on subsequent theories
and therapy programs. His analysis was predominantly intrapersonal,
suggesting that the griever alone could complete this task without aid
from others. This approach deflected later analysis in the psychoana¬
lytic tradition from examining the potential impact of interpersonal
processes on the recovery from grief (Stroebe & Stroebe, 1987;
Raphael et al., 1993).
Attachment Theories of Pathological Grief
The attachment theory, as developed by Bowlby (1961, 1969, 1973,

1979, 1980-1981, 1982, 1988), conceptualizes the propensity of human
beings to form strong affectional bonds with others, explaining the
many forms of emotional and personality distress caused by separation
and loss. It incorporates psychoanalytic thinking along with principles
taken from ethology and cybernetics.
The key to Bowlby’s (1979) thesis is the connection between the
individual’s tie with parents and personal later capacity to form affec¬
tional bonds. Representational models of attachment figures and of self
that have developed during childhood and adolescence tend to persist
relatively unchanged into and throughout adult life. As a result, any
new person with whom a bond is formed, such as a spouse or child,
tends to be assimilated to an existing model (either of one or the other
parent or of self), and continues so, despite repeated evidence that the
model is inappropriate. This postulate assumed vital importance in
determining therapeutic strategies and identifying vulnerable popula¬
tions.
Based on research data on mother-child separation collected in
hospitals and other institutions, Bowlby and his associates in early stud¬
ies generalized the sequence of responses seen in young children dur¬
ing temporary separation from their mothers as protest, despair, and
detachment. Later, he was struck by the similarity of the responses of
widows to the loss of a husband, as shown in research, to those of
young children. Through a systematic study of literature about mourn¬
ing in healthy adults he concluded that similarities indeed exist
between mourning responses in adulthood and the separation respons¬
es of childhood (Bowlby, 1982).
Parkes, an associate of Bowlby’s, suggested in a study (1991) of fifty-
four adults referred for treatment of psychiatric disorders with bereave¬
ment as their main cause, that patterns of attachment formed in
childhood influence the bonds of adult life. These bonds, in turn, influ¬
ence the pattern of bereavement in distinctive and logically compre¬
hensible ways. Particular types of parental behavior interact with
bereavement and result in particular types of grief behavior. The causal
sequences that emerge are as follows:
1. Anxious and maladjusted parents predispose their children to

become insecure and anxious after bereavement.
2. Absent or rejecting parents predispose their children to depression
after bereavement in adult life.
3. A negative parental influence interferes with the development of
trust in self and/or others. Low “self-trust” predisposes to excessive
grief after bereavement and leaves the bereaved unusually vulnera¬
ble to the death of a parent. Low trust in others predisposes to a ten¬
dency to avoid others and to minimize grieving after bereavement.
4. Conflicts between the parents of young children increase the risk of
marital conflicts when the children marry and renders them vulner¬
able to “conflicted grief” when their parents die.
The attachment theory, as discussed by Stroebe and Stroebe (1987),
conceptualizes the grief process as a form of separation anxiety, offer¬
ing a plausible theoretical interpretation of many aspects of normal and
pathological grieving that other theories, in these researchers’ view,
could not explain. For example, it explains paradoxical symptoms of
grief, such as the urge to search for the lost person, the feeling of the
presence of the deceased, or anger at having been deserted. It also
allows for the identification of antecedents to different forms of patho¬
logical grief. Comparing the different metaphors used by Freud (1917)
and Bowlby (1979), Stroebe and Stroebe (1987) pointed out that Freud
discusses loss and grief in terms of his libidinal energy models, while
Bowlby discusses these emotions in the context of an instinct metaphor.
Bowlby, like Freud, fused ideas from psychoanalysis and ethology,
viewing grief as the emotional response to the disruption of the bond
between the bereaved and the last attachment figure. However, he
argued that grief was not specific to loss through death, for the same
biphasic protest-despair reaction could be observed as a general
response to separation. One of the implications of Bowlby’s theory, in
Stroebe and Stroebe’s view, is that the impact of loss can be lessened by
forming substitute attachments. Thus, Bowlby’s work offers a theoreti¬
cal basis for the ameliorative function of social support (Bretherton,
1995; Fraley & Shaver, 1999).
Bereavement therapy is most appropriate for persons whose grief is
absent, delayed, excessive, or prolonged. Such grief generally falls into
three categories: 1) A complicated grief reaction is manifested as pro¬
longed grief; 2) Grief manifests itself through a masked somatic or
behavioral symptom; 3) The reaction is manifested by an exaggerated

grief response. The goals of bereavement therapy are to resolve the
conflicts of separation and to facilitate the completion of the grief task.
The greater the underlying conflict, the more resistance there will be to
exploring thoughts and feelings perceived as too painful. As in any psy¬
chotherapeutic program, resistance is constantly monitored and
worked with as part of the process.
Following is a review of three widely used types of bereavement
therapy: short-term psychotherapy, cognitive-behavioral therapy, and
group intervention.
Short-Term Psychotherapy
This type of bereavement therapy is usually conducted in eight to

ten sessions. Standard procedure includes the following:
1. A physical examination to rule out the possibility of physical illness
if the bereaved person has physical symptoms.
2. Establishing mutual agreement about the goals of the therapy pro¬
gram.
3. Reviving memories of the deceased: talking about the person who
has died—who he/she was and what he/she was like-and leading the
bereaved into a discussion of memories of hurt, anger, and disap¬
pointment.
4. Assessing which of the four grief tasks are not complete: accepting
reality and letting the deceased person go; expressing both negative
and positive feelings; overcoming feelings of helplessness by prac¬
ticing new skills; and freeing oneself from a crippling attachment to
the deceased, thereby allowing oneself to cultivate new relation¬
ships.
5. Dealing with affect or lack of affect stimulated by memories. In the
case of the idealization of the deceased person-a widespread phe-
nomenon-the therapist allows the patient to describe the deceased
when living and to express anger that may lie beneath the surface.
6. Exploring and defusing linking objects, the symbolic objects that
the survivor keeps to provide a means through which the relation¬
ship with the deceased can be maintained externally. It is important
to ask bereaved persons what items they save after the death and
whether they view them as linking objects. The bereaved person
should be encouraged to bring such an object to the session, and the

issue should be discussed in therapy. Doing this can be helpful in
facilitating mourning.
7. Acknowledging the finality of the loss. Although most bereaved
people accomplish this during the months following their loss, some
persons maintain long afterward that the loss is not final. It is impor¬
tant to help such bereaved persons assess why they cannot acknowl¬
edge the finality of their loss.
8. Helping the bereaved person to say a final goodbye and to under¬
stand that saying goodbye does not mean forgetting the person who
is gone, but bidding farewell to the fantasy that the lost person can
ever be recovered. This may be accomplished gradually during
each session, so that by the end of the therapy the survivor can get
on with living (Worden, 1991).
Another technique for short-term psychotherapy with pathological
mourners, developed by Volkan (1975), is “re-grief” therapy. It is
designed to guide the patient in reviving memories of the deceased and
of the experiences with the deceased in order to “test them against real¬
ity, to accept with affect especially appropriate anger at what has hap¬
pened, and to free himself [herself] from excessive bondage to the
dead.” This form of therapy is intense, with patient-therapist meetings
held four times weekly. The treatment phases are 1) compiling a
detailed history in order to understand why the patient will not permit
the deceased to die; 2) bringing linking objects or tokens of the
deceased with magical properties for the survivor, to the therapy ses¬
sions; 3) reviewing the circumstances of the death; and 4) examining
dreams and fantasies. The final phase of the treatment is reached when
the patient understands that the patient sought something from the
deceased (e.g., a farewell/reassurance/ approval), or that the deceased
represented part of the patient that can now be relinquished.
A different approach was taken by Raphael (1980), who proposed
that support for the acutely bereaved should be nonintrusive, guided
by the provision of basic and spontaneous comfort by one human
being to another. No bereaved person, family, or community can be fit
into a fixed format of stages. Such stages are conceived only as frame¬
works for assisting understanding. What is relevant is an awareness of
crisis, for the early weeks and months after death may fix subsequent
patterns for grief and mourning. Self-awareness on the part of the
bereaved cannot be overemphasized. Raphael (1980) recommended

self-monitoring by the bereaved to sharpen the bereaved awareness of
death, dying, and loss.
Notably, brief psychotherapy is not a panacea. A clinical study of
short-term psychotherapy (Turco, 1982) in the resolution of grief
reveals the complicating influences of multiple previous losses. Only
by working through an earlier loss were patients able to confront a cur¬
rent loss. A controlled-research study (Horowitz et al., 1984) of brief
psychotherapy investigated fifty-two bereaved patients who were eval¬
uated before and after a time-limited dynamic psychotherapy program
aimed at reducing symptoms and disturbances in social and work func¬
tioning. Although the outcomes were generally favorable, the data
clearly indicate that the prediction of psychotherapy outcome is diffi¬
cult. Some patients, however, seemed to self-select brief therapy
because of fears of dependency. Essa (1986) pointed to the viability of
brief therapy in that crisis-intervention techniques have been utilized
successfully in psychiatric emergencies, in the practice of brief psy¬
chotherapy, and in bereavement. Crisis therapy can be especially effec¬
tive with the elderly, who are faced with issues that revolve around
losses of one kind or another. By training primary-care practitioners, to
whom the bereaved generally come when seeking help, a costly refer¬
ral to a psychiatrist can be saved and the stigma of mental disturbance,
which may aggravate the condition, can be avoided (Gerber et al.,
1975).
The dominance of psychiatry in the bereavement literature and the
influence of psychoanalytic thought on theory and clinical practice are
reflected in Hamilton’s (1987) clinical study on mourning, which
describes a patient imprisoned in a suspended state of searching for
her lost parent. The focus is on the phase of mourning in which the
mourner yearns and searches for the lost person, a phase that Hamil¬
ton views as “neglected in the psychoanalytic literature on clinical work
with persons who have sustained a major loss” (p. 251). The turbulent
nature of this phase makes it “a fertile breeding ground for pathology”
(Hamilton, 1987, p. 252). What seems like a manic denial of death to
the outsider is for the survivor a live dialogue with the deceased.
A rare comparative outcome study by Kleber and Bron (1987) of
methods for treating pathological grief analyzed the effects of three
types of grief therapy on eighty-three patients with a control group of
eighteen patients. The therapies were 1) trauma desensitization based
on learning theory and the use of relaxation techniques; 2) hypnosis

therapy based on learning theory; and 3) psychodynamic therapy
aimed at discovering and solving interpsychic conflicts related to loss.
These authors suggested that psychodynamic therapy was somewhat
more effective than the behavioral therapies, even though it aims not at
reducing symptoms but at simulating the coping process. The differ¬
ences between the various treatment methods, however, were found to
be small, with therapeutic success related to such factors as age,
income, locus of control, and feelings of anger. By contrast, a more
recent study by Segal et al. (1999) on brief-exposure psychotherapeutic
intervention for bereaved elderly spouses indicated that painfulness
and negative affect decreased steadily as the sessions progressed. These
authors suggest that confronting painful feelings can potentially reduce
psychological distress in this population.
An unconventional view advocating spreading out grief tasks
(Shuchter & Zisook, 1987) departs from the traditionally held notion
that the task of the bereaved is to “decathect” from the deceased and
“give up” their lost loved one for the purpose of becoming reconnect¬
ed to the living world. Redefining the relevant therapeutic tasks, these
authors argue that the bereaved must somehow find a way of continu¬
ing the relationship with the deceased that allows for both an appro¬
priate experience of grief and a continuing involvement in living. In
addition, contrary to the popular view that antidepressant pharmaco¬
logical treatment interferes with grieving, these authors’ experience has
been that depression distorts grieving and increases maladaptation.
Often, short-term and limited use of low-dose antidepressants may be
necessary.
Cognitive-Behavioral Therapy
Two clinical studies (Gauthier & Marshall, 1977; Gauthier & Pye,
1979) illustrate the technique of “flooding” in treating pathological
grief. This therapy was applied during ten to twelve sessions. The
patient is encouraged to imagine details about the death of the loved
one as vividly as possible. At no time does the therapist show sympa¬
thy for the distress displayed by the patient, an approach known as
“rescheduling of social reinforcement” aimed at curtailing the contin¬
ued attention that the griever obtains from his/her sorrow. Gauthier &
Pye (1979) claim that the prolonged exposure to grief-producing stim-
uli led to a notable improvement, although they concluded that a mod¬

ification of the original intervention is called for. Flooding at full inten¬
sity should not be implemented if the patient cannot sustain such
emotional input; exposure to grief-producing stimuli in a graduated
manner is also effective.
Ramsey (1979) does not advocate a flooding approach within the
first year of loss. For the bereaved who are still grieving a year after the
loss, an assessment would have to determine the individual’s ability to
withstand the stress of such treatment. A person with a history of psy¬
chiatric problems prior to the loss would not be able to withstand the
stress of this therapy. Contrary to the common wisdom in psychother-
apy, a client need not express personal feelings in words if the client is
incapable of doing so. In a section entitled “Warnings,” the author cites
the possible dangers of this harsh therapy, with heightened chances of
suicide. Great care must be taken. Only a therapist with considerable
experience in conventional forms of therapy should attempt this type
of work.
Melges and DeMaso (1980) make intensive use of guided imagery
in grief-resolution therapy designed for dealing with unresolved grief
reactions that persist a year after loss. They delineate interrelated phas¬
es of grief-resolution therapy: 1) cognitive structuring leading to the
decision to regrieve using clearly delineated procedures; 2) guided
imagery for reliving, revising and revisiting scenes of the loss; and 3)
future-oriented identity reconstruction. This form of therapy usually
requires six to ten half-hour or hourly sessions. A distinctive aspect of
this therapy is the use of present-time imagery. The patient is actively
induced to re-experience the loss in the here and now. That an imagi¬
nary rather than a remembered scene can be therapeutic, and not dis¬
counted as make-believe, did not seem to concern the patients being
treated. Changing a patient’s perception of reality, whether through
reliving or reimagining, is viewed by the authors as central to therapy.
Further use of imagery in grief work was made by Cerney (1985),
who suggests that the main contribution of this type of therapy is the
opportunity it presents to resolve unfinished issues with the deceased.
In the case study discussed by the author, imagery allowed a client to
say to her father what she had not dared utter when he was alive. The
author states unequivocally that voluntary thought imagery is effective
for an individual who can construct vivid images and become absorbed
in their content. The consequences are remarkably similar to those that

result from an authentic stimulus situation.
A guided mourning approach (Mawson et al., 1981) continues in
the behavioral tradition of intensive reliving of avoided painful memo¬
ries and feelings associated with bereavement. This therapy likens
unresolved grief to other forms of phobic avoidance that have been
treated successfully by exposure to the avoided situation. The authors
reported that the results were not as effective as would have been
expected from the reports by Gauthier and Marshall (1977). Parkes, in
surveying bereavement studies (1987a), suggests that guided mourning
is indicated where grief has been avoided, repressed, or delayed, but is
not especially useful where patients readily express their grief.
Group Intervention
It is often difficult to persuade the bereaved to join a support group

weeks or months after bereavement, when the first pangs of grief are
over, although many will benefit from such group intervention (Parkes,
1987). Support groups, as individual counseling, provide normaliza¬
tion, validation, and a safe place for the expression of grief, and help
decrease the sense of isolation that many bereaved feel (Nolen-Hoek-
sema & Larson, 1999).
Most of the group intervention is done in self-help groups. Walls
and Meyers (1985), reporting on three types of group therapy with
three groups of widows-cognitive, behavioral, and self-help interven-
tions-hypothesize that the cognitive-restructuring and behavioral-skills
groups would show greater improvement than the control (self-help)
group in measures of dependency, reflecting a better adjustment to
widowhood. The results of the research, however, were surprising:
none of the three group interventions had a significant effect on adjust¬
ment, with only moderate support attributable to the cognitive-restruc¬
turing intervention. If group therapy is to be viewed as more than an
economic convenience, the authors concluded, research is required to
design more effective interventions. Significantly, Caserta and Lund
(1996) found that support groups were effective in engaging widows in
social interaction with members of the group outside the meetings.
Similarly, Forte et al. (1996) indicate that shared grief work helped par¬
ticipants build new social networks, enabling them to regain the num¬
ber and type of connections they had had before their loss.
Postbereavement mutual support groups fall into two categories: 1)

those that help deal with personal grief, problems resulting from
bereavement, and the reorganization of one’s life; and 2) those that
help cope with grief exacerbated by the circumstances of the death-
suicide, homicide, or death of a child. The assumption underlying
mutual-support bereavement groups is that the person best qualified to
understand and help with the problems of bereavement is another
bereaved person (Lieberman, 1993).
Silverman (1986), in a ground-breaking article on a mutual support
group, “The Widow-to-Widow Program: An Experiment in Preventive
Intervention,” holds that widowhood is best thought of as a life transi¬
tion rather than a crisis, and that in order to make the transition suc¬
cessfully, widows need to change their self-image in order to enable
themselves to learn new roles. Self-help groups vary considerably from
this far-reaching model. Some programs simply offer group support,
while others provide one-to-one outreach as well. Some groups have no
professional involvement, while others have a substantial amount.
Intervention, in the original widow-to-widow model, was based on a
public health approach rather than a clinical model-because it is not
always possible to identify at-risk individuals in advance, the program
was designed for the entire population, using an outreach rather than a
self-referral approach. Help was offered three to six weeks after
bereavement by another widow who could serve as a role model dur¬
ing the transition. Initially, help was offered on a one-to-one basis, as
the recently bereaved are generally not ready for group interactions.
This type of intervention helps the new widow adjust better to her
sense of loneliness.
Parkes (1987b) warns that many people join support groups for help
because they are emotionally disturbed, which may lead the less dis¬
turbed to leave the group. Dominance by people with personality
problems may present a pessimistic or paranoid view of normality to
new members. Nevertheless, there are many such groups in which the
leadership remains in the hands of healthier members.
Although the bereavement process for the caregiver of a cancer
patient begins before the death, in the terminal phase of the illness, so
that the caregiver does not generally develop pathological grief, special
attention must be devoted by the therapist to the euthanasia issue (see
Chapter 9). Caregivers who accede to the patient’s desire to die may
have latent guilt feelings because their loved one could have lived
longer, and they were involved in shortening the loved one’s life. By
the same token, caregivers who do not accede to the patient’s desire to
end life may have guilt feelings over the prolonged suffering of their
loved one. Such feelings may contribute to the development of grief
pathology.
CONCLUSION
In addition to involving the family caregiver in the patient’s psy¬

chosocial intervention sessions, it is important to establish special inter¬
vention programs (individual or group) for the caregiver in all phases
of the illness in order to reduce caregiver distress and ease the process
of coping with changing demands. Such programs, moreover, may
help prevent pathological grief on the part of the family caregiver sur¬
vivor. The psycho-oncologist must be vigilant regarding the caregiver’s
behavior during the course of the illness and the implications of this
behavior on the caregiver’s recovery after the loss of the patient.
Bereavement counseling, which is recommended for anyone who loses
a loved one, is particularly helpful for the caregiver survivor in read¬
justing to the loss and may prevent pathological grief.
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Chapter 9
DOCTOR-CANCER PATIENT-FAMILY
CAREGIVER RELATIONSHIP AND
MEDICAL ETHICS ISSUES
INTRODUCTION
T he vital, multifaceted role played by the primary family caregiver

in the medical treatment process during each phase of the cancer
patient’s illness (diagnosis, surgery, medical treatment, recurrence, and
terminal) becomes even more complex with the inevitable involve¬
ment of the caregiver in medical treatment and decisions. Although
involving the caregiver in the treatment process, whether at the initia¬
tive of the patient or the doctor, is indisputably in the patient’s best
interest (see Chapter 2), several troublesome ethical issues may arise.
These include the question of the patient’s autonomy; the doctor’s
acquiescence to the caregiver’s point of view regarding revealing the
diagnosis, prognosis, or both to the patient; and the caregiver’s partic¬
ipation in decisions regarding experimental drugs, cessation of medical
treatment, or preferred place to die.
Other issues include whether the doctor must obtain the consent of
the family before treating-or withholding care-when the patient is
incompetent, or the doctor’s role in the case of disagreement between
the primary and secondary caregivers regarding a medical treatment
decision for an incompetent patient. Perhaps the gravest dilemma may
arise in the terminal phase of the illness regarding the right of the fam¬
ily caregiver to stop treatment (Long, 1999).
249
Despite the importance of these and other ethical issues, little

research has been devoted to the implications of the family caregiver s
involvement in the medical process in terms of the doctor-patient rela¬
tionship, the caregiver-doctor relationship, or the caregiver-patient
relationship. These dyadic relationships have a complex triadic aspect
as well (see Figure 9.1). Exploring this issue may guide the doctor,
while also alleviating the caregiver’s as well as the patient’s psycholog¬
ical distress.
DOCTOR-PATIENT RELATIONSHIP MODELS: IMPLICATIONS

FOR FAMILY CAREGIVER INVOLVEMENT
The family caregiver’s involvement in the medical process has a

direct impact on the doctor-patient relationship as well as on the care-
giver-patient relationship itself. Moreover, it may affect not only the
caring and curative process, but also the extent of the caregiver’s own
distress. In the absence of a model illuminating the doctor-caregiver
relationship, the discussion of this issue is based on doctor-patient rela¬
tionship models (Roter & Hall, 1993).
A basic aspect of contemporary medical care is the assumption of
physician authority side by side with patient autonomy. Patient auton¬
omy means that the individual (in the present context, the patient)
should have control over the individual’s body and should make per¬
sonal decisions relating to medical treatment. This concept marks a
major shift from the traditional view of the patient as a recipient of treat¬
ment to the notion of being a partner in it (Mason & McCall-Smith,
1999; Greenfield et al., 1985). Medical authority, in this perception, is
integral in the services of an expert: the patient follows the doctor’s
orders because it is assumed that the orders are scientifically based and
well meaning (Parsons, 1975). However, the patient may choose to dis¬
regard the doctor’s orders and decide to follow personal inclinations, or
other advice, instead. This rejection of authority may be defined as an
expression of patient autonomy—the determination to resist the physi¬
cian’s will (Haug & Lavin, 1983; Goodrich & Wang, 1999). Patient
autonomy and physician authority are delineated along a negotiated
spectrum in any given relationship. Because of the great variance in the
patient’s ability to negotiate in this realm, the potential for medical coer-
Doctor-Cancer Patient-Family Caregiver Relationship 251
FIGURE 9.1. The Triadic Doctor-Patient-Family Caregiver Relationship Model
cion has been identified as a central question of medical ethics. Indeed,

since the 1960s, patient autonomy has been a tenet of medical ethics
and is almost universally regarded as a necessary and important ele¬
ment of civilized and enlightened medical care (Botelho, 1992). It is an
especially sensitive issue in the case of a life-threatening illness, when
preserving this autonomy by acceding to the patient’s decisions regard¬
ing medical treatment may affect the patient’s length of life.
Conceivably, the involvement of the family caregiver in the
patient’s medical process might be a factor that interferes with the
patient’s autonomy, and in extreme cases even harm the patient-doc-
tor relationship. Should the family caregiver doubt the authority of the
doctor when the patient does not, the doctor-patient relationship may
be indirectly affected, which in turn may cause conflict between the
patient and family caregiver, as is described later.
Doctor-patient relationships are described in the literature as
falling into several types of categories. Roter and Hall (1993) present
four relationship models: paternalism, consumerism, mutuality, and
default. Randell and Downie (1996) posit five models: benevolent
paternalism, customer-salesperson, contractual, partnership, and
trustee. Charles et al. (1997, 1999b) depict a paternalism, shared, and
informed model. The differences between the categorizations are main¬
ly terminological, except for the default doctor-patient relationship
model discussed by Roter and Hall (1993), which is characterized by a
breakdown in the doctor-patient relationship.
The following descriptions focus on three widely accepted doc-
tor-cancer patient relationship models-paternalism, consumerism, and
mutuality-and their applicability to the role of the caregiver in the
dyadic and triadic relationships.
Paternalism
Paternalism is widely regarded as the traditional form of the doc-

tor-patient relationship and is still viewed as the most prevalent. Based
on the notion of the passive patient and dominant physician as the
ideal therapeutic relationship, paternalism is most clearly described by
Parsons in his classic discussion of the role of the ill person in society
(Parsons, 1951). Doctor and patient are viewed as fulfilling necessary
functions in a well-balanced and well-maintained social structure. Sick¬
ness, in this model, is considered a necessary occasional respite that
provides a brief exemption for patients from societal responsibilities.
Physicians, by defining the terms of the illness and its privileges, pro¬
vide this respite. The patient’s role is passive and dependent. When this
type of relationship develops between the doctor and the family care¬
giver as well, no conflicts or ethical problems arise. The relationship
legitimizes the patient’s illness, the doctor’s determination of the course
of treatment, and the caregiver’s role and medical responsibility. Since
there is no sharing of any of the decision-making steps in this model, by
definition a doctor-patient partnership does not exist. Charles et al.
(1999a) emphasize that in cases where both the patient and the doctor
prefer this approach, arguably they have entered into a form of part¬
nership based on agreement about how the process should be under¬
taken. In such a situation, the caregiver “helps” the doctor in sustaining
patient compliance while assuming the caregiving tasks. The doctor,
acting in the doctor’s sphere of expertise, maintains emotional detach¬
ment and distance from both patient and caregiver so as to function in
the patient’s best interest.
However, should the doctor-family-caregiver relationship develop
differently from the paternalist model, such as along the lines of the
consumerist or the mutuality models (see later), ethical issues may
arise. For example, the caregiver’s decision during the diagnosis phase
to seek a second medical opinion or alternative medical treatment for
the patient’s illness may be interpreted by the doctor as a questioning
of the doctor’s authority or expertise. This may affect the
doctor-patient relationship-by evoking anger on the part of the doctor,
diminishing empathy, reducing attention, and so forth.
The universal ethical question that arises, and the one that is most
problematic in the case of a life-threatening illness such as cancer, is
whether the doctor has the right to ignore the family caregiver’s
involvement on the basis of professional commitment, both legal and

moral, to the patient only. Put another way, is the doctor the sole
arbiter of what is best for the patient? Conversely, how clear is it that
the patient wants the caregiver’s intervention in the patient decision
making, even though the caregiver is devoted to the patient’s during
the illness process? In the diagnosis phase, for example, the caregiver
spouse of a breast cancer patient may have a different perception from
that of the doctor who suggests mastectomy rather than lumpectomy
(in cases where there is an obvious choice). Similar situations regarding
treatment choices often occur in cases of prostate cancer (Boehmer &
Clark, 2001). The question is: Should the doctor be influenced by the
caregiver’s opinion? Another example involves the recurrence or ter¬
minal phase when the family caregiver may disagree with the doctor’s
assessment of the patient’s ability to function (an assessment, signifi-
candy, that affects the extent of social security assistance), interpreting
it as a lack of sensitivity toward the caregiver’s burden. Should the doc¬
tor take this factor into consideration? More significant, in this phase
the doctor communicates mainly with the caregiver rather than with
the patient regarding care. Both the doctor (because of expertise) and
the family caregiver (because of kinship) may feel that they have the
right to decide the best way to treat the patient. Both may thus infringe
on the patient’s autonomy.
The paternalist doctor-patient relationship, which was still preva¬
lent in the 1980s doctor-patient models, may, therefore, evoke ethical
problems over caregiver involvement in medical decisions.
Consumerism
The validity of the paternalistic relationship began to be questioned

during the 1960s and thereafter. In a reality in which there was no sin¬
gle best treatment for certain illnesses, including cancer, a murkier and
more complex decision-making context evolved where various treat¬
ments had to be evaluated in terms of trade-offs between benefits and
risks (Charles et al., 1999a). The paternalistic doctor-patient relation¬
ship, therefore, yielded to a more consumerist one. A recent survey
(Jaye, 1999) found that 70% of adults in the United States reported that
they had been taking a more active role in controlling their health in
the preceding five years than previously, and 65% believed that learn¬
ing more about health care was very important.
In the information-exchange stage of the consumerist relationship,

the doctor leads and the communication is one way, from doctor to
patient. The doctor conveys information to the patient about all rele¬
vant treatment options and their benefits and risks. The amount and
type of information communicated is sufficient to enable the patient to
make an informed treatment decision (Charles et al., 1999b)v This type
of relationship is most common in cancer screening programs. When
the situation calls for emergency care, a “seller’s market” situation
exists, and the patient’s role tends to be that of a supplicant. However,
when prevention is considered, the patient is less a supplicant than a
skeptic. In short, the redefinition of the patient-doctor relationship as
a consumer-provider exchange is more than a matter of semantics: it
refocuses the traditional perspective and thereby changes the nature of
the social relationship between the medical profession and the lay
word.
Arguably, however, the consumerist relationship cannot function in
emergency cases, when the patient faces an imminent risk to life and
cannot choose the treatment provider or the conduct of the treatment.
Rather, the consumerist relationship applies to a therapeutic situation,
in which the patient can choose the doctor who will treat the patient
and the method of treatment. This latter situation, more than the for¬
mer, resembles that of a shopper in a supermarket. In therapeutic cir¬
cumstances the patient is not in any immediate danger and has time to
consider the options.
Another dimension of the consumerist relationship is the challenge
by the patient to unilateral decision making by physicians in reaching
closure on diagnosis and working out treatment plans (Haug & Lavin,
1981). The challenge to the physician’s authority lies in reversing the
basic nature of the power relationship, focusing on the purchaser’s
(patient’s) rights and the seller’s (physician’s) obligations, rather than on
the physician’s rights (to direct) and the patient’s obligations (to follow
directions). In a consumer relationship, the seller has no particular
authority; if anything, legitimated power rests in the buyer, who can
make the decision to buy or not to buy as the buyer sees fit.
This concept, however, does not apply in cancer-patient treatment
(except in cancer screening programs), especially in the recurrence or
terminal phases when the patient is facing the prospect of death. The
doctor’s task is to act for the patient’s good, while the salesperson’s aim
is to sell goods. The customer-salesperson model, in which both parties
are equally autonomous but the emphasis is on the customer’s needs,

is not, therefore, an appropriate model for the patient-doctor relation¬
ship in these phases, partly because many patients at these stages have
severely compromised autonomy or none at all, and partly because the
aims of the two parties are disparate.
A key ethical question may arise regarding the involvement of the
family caregiver in the consumer relationship during the diagnostic and
medical-treatment phase of cancer, namely, does the family caregiver
(in this analogy, the purchaser) have the right to be informed, too?
Does the physician have an obligation to take the caregiver’s demands
into consideration? What happens to the doctor-patient relationship
when the caregiver’s demands conflict with the doctor’s obligation to
the patient, such as when the caregiver demands additional examina¬
tions for the patient before a medical decision is made, or when the
caregiver seeks a second medical opinion, which results in the recom¬
mendation of a different type of treatment? The caregiver, even more
than the patient, often feels not allowed to rely on a single opinion,
even if it is an expert one. Can the doctor in a consumerist relationship
refuse to provide the treatment that the caregiver demands?
The question of autonomy in the consumer relationship becomes
even more complicated in the recurrence and terminal phases when
the patient’s dependency on the caregiver increases. At a certain point,
the caregiver, rather than the patient, may be said to become the con¬
sumer. Does the caregiver alone then have the right to decide what to
purchase, or is the caregiver an equal partner with the patient in this
relationship? Obviously these questions have no clear-cut answers. The
doctor must be aware of these dilemmas and of the dynamics of the
specific situation.
Notably, in countries where health services are provided mainly by
the state (e.g., U.K., Israel), this model has less, if any, practical appli¬
cation. It is more relevant when the patient is treated privately, where
there is a contract between the parties.
Mutuality
The mutuality model of the doctor-patient relationship evolved

largely in reaction to paternalism and consumerism. In this model, the
patient is perceived as neither standing alone (paternalism) nor as stand¬
ing aside (consumerism) when the difficult task of medical decision-
making is undertaken. The interaction in this type of relationship is

based on the doctor and patient sharing all stages of the decision-mak¬
ing process simultaneously (Quill, 1983). Each side in the relationship
contributes strengths and resources to it, along with a commitment to
work through disagreements in a mutually respectful manner. It is a con¬
tractual approach to patient care, based on the following assumptions: 1)
Each side has unique responsibilities; 2) The relationship is consensual,
not obligatory; 3) There is a willingness to negotiate; and 4) Each par¬
ticipant must benefit from the relationship (Charles et al., 1999a, b).
However, even in the mutuality type of doctor-patient relationship,
which is viewed as an ideal model, an ethical dilemma may arise
regarding the involvement of the family caregiver. Does the participa¬
tion of another party in the negotiation necessarily benefit the patient,
even if that party is a family member? Which medical decisions result
in superior outcomes-those made jointly by the patient, family care¬
giver, and physician? Those made primarily by the patient? Those
made primarily by the caregiver? Or those made primarily by the
physician? Once again, to what extent should the physician take the
caregiver’s viewpoint into consideration when decisions are made?
Summing Up
The doctor-patient dialogue in itself may be complex in everyday

practice. Clinical decision-making interactions, therefore, are likely to
reflect some form of hybrid model. Human behavior rarely conforms
to ideal types. Given the often dynamic and personal nature of the doc-
tor-patient relationship, the decision-making model adopted at the
outset of a clinical encounter may not unfold according to patterns of
the ideal type but instead be modified to reflect the needs of individual
patients. This situation is all the more complex when there is family
caregiver involvement, which typifies the incidence of cancer. Much is
yet to be learned about the best way to collaborate with the patient in
the case of such involvement, as the family-caregiver may interpret the
medical information differently from the patient. In light of the care¬
giver’s vital role in taking responsibility for the patient’s medical treat¬
ment (i.e., supervising the drug schedule, arranging medical
appointments and the transportation involved, providing support for
the patient, etc.), does the doctor have the right to dismiss the caregiv¬
er’s opinion?
These issues are even more complex in the recurrence or terminal

phases when the patient is more dependent on the caregiver. On the
one hand, involving the caregiver in the medical decision-making
process, especially in these phases, increases the patient’s sense of loss
of control over life, already engendered by reduced functional activity.
On the other hand, excluding the caregiver from the process is unreal¬
istic, due to the extent of the patient’s dependency on the caregiver.
Moreover, the physician must be sensitive to the impact of personal
behavior on the patient-caregiver relationship should the physician
decide not to involve the caregiver in the medical decision making.
The caregiver may feel hurt and angry.
Several studies have indicated that the involvement of the patient in
medical decisions, such as choice of type of surgery by the breast can¬
cer patient, may be beneficial for the patient in terms of physical and
psychological functioning, attitude toward the future, satisfaction with
the decision-making process, and compliance with therapy (Reaby,
1998; Rowland & Massie, 1998). However, no research has been pub¬
lished assessing the impact of caregiver involvement in the medical
process on the patient-caregiver-doctor relationship, or the impact of
the doctor-patient relationship on patient and caregiver psychological
distress—areas that merit attention.
PATIENT AUTONOMY AND CAREGIVER INVOLVEMENT
Confidentiality
Legally as well as morally, the doctor’s commitment is to the

patient only (Stern, 1998). However, most cancer patients are accom¬
panied by a family caregiver throughout the medical process, a situa¬
tion that elicits a wide range of questions touching on the
doctor-patient relationship. For example, by taking into account a fam¬
ily caregiver’s request not to reveal the diagnosis to the patient, the
physician is breaching the duty of confidence to the patient, even if
such a decision proves to be beneficial to the patient. However, disre¬
garding the caregiver’s request might cause harm to the patient-by
impairing quality of life and even evoking a tendency toward suicide.
Another example of the dilemma of confidentiality involves admit-
ting/excluding the caregiver in doctor—patient consultations. Main¬

taining doctor-patient confidentiality may cause embarrassment to the
patient even in cases when the patient would prefer speaking with the
doctor alone but fears insulting the caregiver, on whom the patient is so
dependent (Blanchard et al., 2000).
In each of the doctor-patient relationship models discussed previ¬
ously (paternalism, consumerism, and mutuality), the key ethical ques¬
tion that arises regarding caregiver involvement in the patient’s medical
decisions is how it affects patient autonomy and confidentiality. Since
the relationship between doctor and patient is based on, and necessi¬
tates, mutual trust (Brown & Gannon, 1996), in order to arrive at an
accurate diagnosis, the doctor must assume and trust that the patient is
disclosing all facts relevant to the patient’s condition. The patient, like¬
wise, trusts that the doctor will respect the knowledge to which the doc¬
tor has been made a party and not disclose it to others. The involvement
of the caregiver in a medical decision, then, represents a breach of trust
and autonomy, even if, as in most cases, it is for the patient’s benefit.
This situation becomes more complex in cases where the patient has a
language barrier (e.g., when the patient is an immigrant) and the care¬
giver must translate the medical information. Often, the caregiver in
such a situation is selective in translating the information, generally out
of a desire to shield the patient from distress. Conversely, withholding
the patient’s medical diagnosis from the caregiver, or excluding the
caregiver from the medical decision-making process generally, may
cause a sense of confusion or betrayal between the patient and the care¬
giver and affect caregiving effectiveness. Labrecque et al. (1991) found
that when family members are present in a consultation with the doctor
in the case of cancer, the doctor tends to give more information.
An additional facet of the doctor’s obligation regarding confiden¬
tiality is the legal aspect. This context involves two levels. The first is
the justification stage, namely, if and when the patient sues the doctor
for breach of a duty, the doctor may allege that this breach of confi¬
dence is justifiable under the “public interest” defense. This notion
means that the doctor can breach the patient’s right to confidentiality
when an individual or a group of people are in danger of physical harm
and the doctor’s warning can prevent that harm from occurring (The
General Medical Council Guidance, 2000). The next level is the doc¬
tor’s duty to warn the relative of the risk faced due to the patient’s con¬
dition. In the landmark Tarasoff v. Regents of U. of Ca. (1976), the
Supreme Court of California held that when a psychiatrist knows that

a patient has threatened to kill an identifiable individual, the psychia¬
trist must take preventative measures to avoid this risk-by warning the
police or the individual’s family. This fundamental legal decision has
been applied in cases regarding infectious disease (.Reisner v. Regents of
U. of Ca., 1995) and genetic disorders (Pate v. Threlkel, 1995; Safer v.
Pack, 1996): courts in the United States ruled that a breach of medical
confidentiality is justifiable in cases where there is a possibility of pres¬
ent infection or genetic risk to members of the family, such as AIDS,
cystic fibrosis (DCF), mental health illness or the presence of BRCA1
breast cancer and BRCA2 breast cancer genes (Hook, 2000). The
courts, however, assumed that if the doctor had disclosed the informa¬
tion to the patient, the doctor would disclose it to the relative. The law
does not discuss confidentiality issues in the context of family-caregiv¬
er involvement in medical decisions or processes, as no claim has ever
been brought against a doctor on this issue. The only context in which
the law discusses the tripartite doctor-patient-caregiver relationship is
in the circumstances in which the caregiver faces potential damage due
to the doctor’s failure to warn the caregiver of the implications of the
patient’s condition for the caregiver’s physical or mental health.
The Right to Know or Not Know Medical Information
Patient’s Rights
A large body of literature is devoted to the right of the patient to

know the “truth” about a diagnosis, and how and when to inform the
patient (Hook, 2000). Recent literature recommends telling the “truth”
to the patient, not only because it is the patient’s legal right to know,
but also in order to avoid doctor-patient communication problems that
may arise if the doctor will not tell the truth. Moreover, most research
indicates that patients want as much information as possible, good or
bad, both in the initial phase of the illness (Butow et al., 1996; Pimentel
et al., 1999) and in the recurrence phase (Haidet et al., 1998). A study
by Benson and Britten (1996) of thirty cancer patients reveals that all
wished the doctors to respect their views over those of their family,
should they differ. The subjects favored close family receiving infor¬
mation about their illness with their consent; most rejected uncondi¬
tional disclosure of information without their consent; and most
rejected the notion of having their family influence what information

they would be given. The authors concluded that the patients valued
respect for their autonomy more highly than beneficence.
Ethically, however, the medical staff, and especially the oncologist,
must act with care in this situation and find ways of assessing the
patient’s wishes. Even if, in the initial phase of the illness, the patient
indicates implicitly or verbally that the patient wants the caregiver to
participate in the medical consultative process, this preference may
change over time. The need to overtly request the patient’s permission
for such participation in every phase of the illness is, therefore, impor¬
tant. Moreover, the doctor must evaluate whether the presence of the
caregiver is in the patient’s best interest. Patients who prefer total con¬
fidentiality may feel anger at both the doctor and the caregiver, which
may affect the relationship with both. The outcomes of these feelings
may cause the patient as well as the caregiver a high degree of distress.
The doctor must know that the doctor is obliged to respect the patient’s
wishes, which ought to constitute the most compelling influence on the
tripartite relationship.
Caregiver’s Rights
The recent tendency in the United States and in other Western

countries (e.g., U.K., Israel) emphasizes the need for the patient’s con¬
sent regarding medical treatment, showing that generally the law
requires the physician to respect the patient’s rights, including confi¬
dentiality. There are, however, persuasive arguments against withhold¬
ing genetic information, namely, such information should be shared
with all family members, and the patient’s unwillingness to share a
genetic condition may not outweigh the relative’s wishes to know and
receive this information (Skene, 1998). When applying this view to the
situation of a mother with breast cancer who carries the BRCA1 or
BRCA2 gene, this argument supports the caregiver daughter’s right to
know her mother’s diagnosis, not only because she is the primary care¬
giver, but for her own purposes-to improve her life expectancy or to
prepare herself psychologically for the onset of the disease.
Recent trends among legal scholars regarding caregiver right also
emphasize a quite different attitude: the right not to know (Laurie,
1999; Laurie, 2000). This issue is especially relevant when the patient’s
medical condition might affect the cosanguine caregiver’s physical
health. Researchers argue that some people prefer to live their lives
without knowing whether they are likely to have a terminal disease in
the future. Informing the caregiver about the patient’s medical condi¬
tion can lead to a fear of the future, or might harm individual social
functioning.
In the present context, arguably, the caregiver’s right not to know
the patient’s medical condition should be respected because such
knowledge might affect the caregiver psychologically. Does the care¬
giver really wish to know the patient’s prognosis, or would it suffice to
provide the caregiver with information regarding the care of the patient
only? As empirical studies regarding terminal genetic diseases prove,
knowing the “truth” is not always a good thing, and such information
is not often always sought by the patient or the relative (Andrews,
1990).
The Doctor’s Role in Informing the Patient and the Caregiver
The literature differs over how and when to inform the patient
about a medical situation. In practice, the doctor often informs the fam¬
ily caregiver about the patient’s medical situation before informing the
patient-by providing information immediately after surgery. This situ¬
ation is most common in specific cancer-patient populations such as
elderly cancer patients or adolescents. Sometimes, the physician may
consult with the caregiver regarding how and when to convey the
diagnosis to the patient, in the anticipation that such disclosure will be
harmful to the patient’s well-being and might even lead to suicide. The
very act of informing the family caregiver before the patient, however,
may damage the mutual trust between both the patient and the doctor,
and between the patient and the caregiver. Yet, many caregivers seek
this paradoxical combination of compassion for and deception of the
patient (Hanratty, 1989).
Disclosure of medical information to the caregiver behind the
patient’s back is most common in the recurrence and terminal phases
when the caregiver must be made aware of possible medical develop¬
ments that might occur in light of the patient’s condition. Since con¬
veying this information to the patient immediately on recurrence might
rob the patient of all hope of halting the regression of the illness, the
best way to convey it, as shown in the literature, is gradually, and with
a close relative present (Butow et al., 1996; Peteet et al., 1991). The
physician should elicit from the patient what is already known about
the situation and explore how much more the patient wants to know.
Even if the caregiver insists on not telling the patient the “truth,” if
the patient indicates a desire to know certain information, the patient
has the right to know. The doctor must explain to the caregiver that the
doctor will not lie to the patient, but at the same time promise not to
blurt out every detail (i.e., more information than the patient wants to
receive). Doctors who accede to the caregiver’s request not to divulge
the diagnosis or prognosis to the patient should be aware that the
request may stem from the caregiver’s own fears of death. While the
caregiver believes that the caregiver is protecting the patient, the care¬
giver may be contributing to the patient’s, and to a personal sense of
loneliness and isolation (Wilkes, 1989). Moreover such a situation may
cause problems in communication. Each of the parties—the doctor, the
patient, and the family caregiver—assumes that the others do not want
to discuss death. The physician and the other medical staff do not raise
issues relating to death for fear of causing stress to the patient. The fam¬
ily caregiver may avoid the issues on the assumption that the patient
does not know that the prognosis is poor, or from a conviction that
such a discussion will cause stress to the patient and possibly worsen
his/her medical condition. The patient, too, fears upsetting the family
or the medical staff by asking questions about the possibility of death.
Added to each party’s sense of loneliness is the lack of communication
between the patient-doctor-caregiver triad, which can harm these rela¬
tionships.
THE DOCTOR, THE INCOMPETENT CANCER PATIENT, AND

THE FAMILY CAREGIVER
Some of the most difficult issues in the care of the critically ill arise
when patients are not competent to make choices about their treat¬
ment. Incompetent patients, however, differ in their level of awareness
of their medical situation. In the case of cancer, incompetence is
defined as patients who are in a coma and do not interact with others.
Since incompetent patients cannot consent, there is no ready bench¬
mark for knowing when treatment can be stopped.
While it may seem self-evident that when the patient is incompe¬

tent, the doctor will rely on individual judgment and not on the family
caregiver’s attitude toward treatment, this issue is complex. One of the
main questions in this area is whether family members (primary and
secondary caregivers) have the right to stop treatment for an incompe¬
tent person. At first glance, the answer would appear to be yes. How¬
ever, from a legal point of view, only a competent patient or a
court-appointed guardian has the right to stop treatment, while the doc¬
tor’s duty in the case of an incompetent patient is to give or withhold
care purely on the basis of benefit to the patient. If the treatment is ben¬
eficial, the patient has a right to be treated. If the treatment does not
serve the patient’s interests—prolongs life but does not maintain any
quality of life—the doctor’s obligation to treat the patient ends. Gener¬
ally, the doctor’s assessment of these issues must be approved by the
incompetent patient’s guardian or legal representative. The family
caregiver has no independent personal right in the treatment decision
unless the caregiver is the legal guardian.
In practice, however, doctors often regard the family caregiver as
having the legal authority to decide about the treatment of the incom¬
petent patient. Doctors often request the caregiver to consent to deci¬
sions to give or stop treatment. If the caregiver refuses to accede,
however, the doctor is not obliged to follow the caregiver’s wishes and
must determine what best serves the patient’s interests, as the family
has no right to harm an incompetent person.
A related issue is whether the doctor ought to get the consent of the
family caregiver before treating or withholding care from an incompe¬
tent patient. As the discussion earlier shows, such consent is not legal¬
ly required unless the caregiver has been appointed guardian of the
patient, and, thereby, has the authority to decide about treatment.
When there is a guardian, doctors should never act without obtaining
the guardian’s consent. In such a case, it is wise for the doctor to inform
all the family members of the situation so that they may consult with
the guardian or even challenge the guardian’s decision if they think it
does not serve the patient’s interests. Often, however, patients inca¬
pable of consent are not officially declared incompetent and do not
have an appointed guardian. As a practical measure in such cases,
rather than go through the time-consuming formalities of having the
patient declared incompetent and appointing a family member as a
guardian, doctors seek the caregiver’s consent to stop treatment if they
consider it in the patient’s interest. Although this is not a legal proce¬

dure, it occurs widely in cases when the doctor is certain of the patient s
wish to stop treatment (i.e., the doctor has treated the patient during all
phases of the illness), and when the family is willing, too. The point that
is important here is that although euthanasia is not legal (except in the
Netherlands, under certain conditions), it often occurs not only because
the family desires it (they cannot bear the patient’s suffering), but also
because it is in the patient’s interest.
Another important aspect of caregiver involvement in terminating
medical treatment for the incompetent patient is the impact of this deci¬
sion on the caregiver’s grief process (Lederberg, 1998). One study (van
Den Boom, 1995) has found that a contentious euthanasia process can
cause added bereavement distress for relatives. While patterns of grief
in family members of cancer patients who have died by euthanasia
have never been studied (Swarte & Heinz, 1999), clinical experience
shows that many of the survivors who are involved in such decisions
have guilt feelings that can affect the bereavement process.
CONCLUSIONS
The ethical issues involved in the dyadic/triadic relationship

between the doctor, patient, and caregiver are not necessarily resolv¬
able and merit ongoing examination.
Although the family caregiver plays a vital role along the entire ill¬
ness process, ranging from giving intimate personal care to providing
emotional and instrumental support and counseling in medical decisions,
the caregiver, the medical staff, and especially the doctor must always
remain conscious of the patient’s autonomy. This is obligatory no matter
what the doctor-patient relationship is-paternalist, consumerist, or
mutual. Preserving the patient’s autonomy is a major goal in every chron¬
ic and terminal illness. From the physician’s point of view, however, the
most important focus is on the right medical decision, even at the
expense of violating patient autonomy. The issue becomes more com¬
plex in the recurrence and terminal phases because patient function is
reduced and dependence on the doctor and on the caregiver is height¬
ened. To sum up, in the initial phase of the illness the doctor-patient
relationship is generally dyadic, with the caregiver having less direct
communication with the doctor, while in the recurrence and terminal

phases the relationship becomes triadic: doctor-patient-caregiver.
When the patient is incompetent, however, the relationship evolves
into a dyadic one between the doctor and the caregiver, although even
in this situation the patient’s autonomy must be preserved, if indirect¬
ly, as the doctor’s primary obligation is to the patient’s needs. While the
caregiver’s opinion can be useful, the doctor must act in the patient’s
best interest. This means considering not only the biomedical perspec¬
tive-prolonging the patient’s life even if the patient is unconscious or
brain-damaged-but the moral perspective-making a compassionate
decision.
The involvement of the family caregiver in the patient’s illness
process may cause great psychological distress for the caregiver per¬
sonally, for the patient, and for the doctor, even though the doctor and
caregiver have the patient’s best interest in mind. In the case of cancer,
caregiver involvement may affect the patient’s quality of life (e.g., urg¬
ing the use of experimental drugs or therapies) and even on length of
life (e.g., stopping medical treatment). The challenge of balancing the
patient’s autonomy with the caregiver’s involvement and the doctor’s
authority as an expert is complex. Further research on these issues may
provide needed guidance both for lay people and for practitioners.
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A.F., Lyn, J., Weeks, J.C., & Phillips, R.S. (1998). Outcomes, preferences for
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■
'«
Chapter 10
SUMMARY AND CONCLUSIONS
T his book has attempted to provide a comprehensive overview of

current research on the caregiver of the chronically ill generally
and the family caregiver of cancer patients specifically. The phenome¬
nology of caregiving, the distinction between primary and secondary
caregiver, the role of the caregiver, and measurement and assessment
techniques have been described in considerable detail. The book also
brings into focus a wide variety of theoretical approaches that have
been incorporated in caregiver research over time.
This reviews theoretical and methodological aspects as well as find¬
ings that have emerged from the authors’ research. Recommendations
for psychosocial interventions based on the outcomes of the research
are also pinpointed. Ethical issues regarding the doctor-patient-care¬
giver relationship—an area that has been unexplored until now-are out¬
lined. Last, future directions in research on the family caregiver are
suggested.
THEORETICAL BACKGROUND
Much of the research about family caregivers of chronically ill

patients, such as cognitively impaired patients, or about caregivers of
the elderly, is guided by a broad range of theories that involve stress,
family system, gerontology, biopsychosocial issues, and personality.
Since cancer is a physical illness that is characterized by both acute
stress during the various phases of the illness (i.e., diagnosis, surgery,
and adjuvant treatment) and chronic stress engendered by the ongoing
269
threat to life and the threat of illness recurrence, the present discussion
of both family-caregiver distress and patient distress is largely based on
stress theory (Chapter 1). The focus of the caregiver discussion is on
appraisals, coping strategies, and resources based on the coping-with-
stress model developed by Lazarus and Folkman (1984), Lazarus
(1999), and Moos and Schaefer (1993). Additional factors—role strain
and illness aspects—are borrowed from Biegel et al. (1991) and Sales et
al. (1992). The model of caregiver distress developed by the authors
demonstrates the effects of stressors and resources. Stressors consist of
caregiver role strain and burden, as well as patient illness variables (i.e.,
phase and stage of the illness, type of diagnosis, and medical treat¬
ment). Resources consist of age, gender, work status, and social support
(horizontal axis, Figure 10.1). An additional important resource in the
caregiver distress model, which is not posited by Biegel et al. (1991) or
Sales et al. (1992), is extent of patient’s and caregiver’s education (see
Figures 1.1, 1.2, and 2.1). The vertical axis of the model shows a some¬
what symbiotic relationship between caregiver and patient distress:
caregiver distress is affected by the caregiver’s own coping and
resources as well as by patient distress, while patient distress, in turn, is
affected by the patient’s coping and resources.
MEASUREMENT ISSUES
Considerable effort has been devoted to conceptualizing and meas¬

uring the distress of the family caregiver in the case of cancer. Cur¬
rently, however, there is no standard approach to caregiving
assessment for caregivers generally, much less for cancer family care¬
givers specifically, either in the clinical or the research setting. Diffi¬
culties exist, for example, in adapting the Burden Scale developed by
Zarit et al. (1980) to establish the burden validity of the caregiver, or in
applying the Psychosocial Adjustment to Illness Scale (PAIS) devel¬
oped for patients by Derogatis (1975b) to family-caregiver adjustment.
These measures are less appropriate for the cancer caregiver due to
the characteristics of the illness as compared to other chronic illnesses
(see Chapter 2). The main scale for measuring caregiver distress, which
was used in all the research presented in the book, is the Brief Symp¬
tom Inventory (BSI; Derogatis, 1975a). Although it was developed to
Summary and Conclusions 271
assess psychological distress in any type of population, it was found to

be reasonably appropriate for measuring caregiver distress specifically.
Furthermore, patient and caregiver distress measured in the original
research is compared to Israeli norms. In addition, the COPE scale
(Carver et al., 1989) was used to measure coping strategies by breast
cancer patients and their spouses in comparison to Israeli norms.
Despite the limitations of some of the scales, the use of standard
measures used in the literature proved effective in comparing the
authors’ research findings to extant research, and in generalizing the
findings in a broader perspective.
Research Design Issues
Research designs, too, become more complex in studying caregiv¬

er involvement with cancer patients. Surprisingly, for example, the
authors’ findings show that some adult cancer patients did not divulge
their diagnosis to their parents. Since the parents in these cases were
not the caregivers for the patient, they were not interviewed. While
such a situation was not found in the case of spouse caregivers, many
cancer patients, nevertheless, did not consent to interviews of their
spouses. As a result, many caregivers were excluded from the ran¬
domized samples, thereby constricting the samples. Another reason for
the small size of the samples was that some patients refused to be inter¬
viewed due to their physical weakness. Furthermore, attempts to inter¬
view the patient and caregiver at more than one point in time during
the various phases of the illness proved impossible, as some patients
had died and others refused to be interviewed when the illness had
progressed. Still, the samples appeared to be representative of the spe¬
cific patient and caregiver populations selected and revealed a great
deal about cancer family distress and adjustment to the illness.
FINDINGS
The cancer caregiver distress model was tested in four types of care¬
giver studies: 1) primary caregiver distress, namely of spouses of breast
cancer, gynecological cancer and elder patients (Chapter 4); 2) primary
caregiver (spouses) coping with breast cancer (Chapter 5); 3) secondary
caregiver (parents of adult cancer patients) distress (Chapter 6); and 4)

caregiver (spouses) bereavement processes (Chapter 7). All the
research tested the distress of both the patients and the caregivers,
while measuring psychosocial adjustment. Certain stressors and
resources were also assessed for their effects. Figure 10.1 shows the spe¬
cific factors in the model that were tested in the present studies^ with
arrows signifying the strength of the associations observed.
As was expected, the strongest contributor to caregiver distress
across all the samples (excluding the bereavement study, where the
caregiver-care receiver association was not tested), as measured by the
BSI (Derogatis, 1975a, 1994), was found to be patient distress. The
Pearson correlation coefficient in most of the samples was .40 and
above, suggesting an effect size of .16 and above. In comparison, posi¬
tive associations were observed between caregiver reactions and
patient reactions in those studies investigating psychosocial adjustment
(i.e., PAIS, Derogatis, 1975b) or everyday activities (Ben-Zur et al.,
2001). Notably, the associations explored were between two inde¬
pendent sources of information (i.e., husband and wife, parent and
adult child). Thus, the conclusion that caregivers are affected by patient
distress is not based on caregiver introspection but on measuring
patient distress itself. This aspect of the model was highly confirmed,
and the findings are consistent with other research assessing associa¬
tions between family caregiver and patient distress in chronic illness
and cancer (see literature review, Chapters 1, 2).
The interpretation of these findings is that family caregiver distress
and functioning are highly affected by patient distress and functioning,
a conclusion supported as well by the analyses of these relationships
while controlling for illness variables, demographic variables, and per¬
sonal resources. The caregiver-care receiver association, therefore,
cannot be attributed to similarities in the patients’ and caregivers’ spe¬
cific family contexts. Moreover, the use of a noncancer patient com¬
munity sample as a control group in studies focused on breast cancer
patients suggested that these strong associations are not the result of the
usual family processes. However, the analysis of the data does not
exclude the possibility that family-caregiver distress affects patient dis¬
tress as well. Conceivably, a positive feedback loop is created, in which
patient distress elevates caregiver distress and vice versa. In any case,
these findings highlight the importance of assessing both the cancer
Figure 10.1. Cancer Caregiver Distress Model*
* The model is based on the empirical studies conducted by the authors presented in this
book (Chapters 4-8).
Note: thick line = highly related to caregiver distress; thin line = weakly related to care¬
giver distress
patient and the caregiver during each of the illness phases, so that the
dyadic interaction can be determined and understood.
Another important aspect of the coping process is caregiver coping
strategies, which were found to be highly related to caregiver distress
and adjustment, although the coping strategies assessed were for breast
cancer patients only (see Chapter 5). This finding is supported by ear-
lier research on family caregiver coping strategies in the case of cancer

and in the case of chronic illness (see literature review, Chapters 1, 2).
The findings also show that the spouse’s perception of the breast can¬
cer patient’s mode of coping is related to his distress and adjustment,
although the patient’s perception of the spouse’s mode of coping does
not show such associations. These interspousal perceptions of Coping
lend further support to the conclusion that caregivers are affected by
their appraisals of the patient’s psychological state. The findings also
highlight the importance of the type of coping strategies patients use,
and suggest that moderating the use of less efficient coping might be
beneficial to the caregivers as well as to the patients.
In the area of the effects of stressors, caregiver burden was found as
a predictor of caregiver distress, although the analysis covered twenty-
nine subjects only. In contrast, patient illness stressors (type of treat¬
ment, type of diagnosis) were found to have a weak impact on
psychological distress. Notably, stage of illness or phase of illness were
not examined in the studies reported here.
Family caregiver and patient resources such as education, age, and
gender play an important role in caregiver distress, as shown in the
cancer caregiver distress model. However, no consistent patterns were
indicated by the findings. Education was positively correlated with
good psychosocial adjustment (PSA) for breast cancer patients. It was
also positively correlated with lower distress (BSI) and good adjust¬
ment (PAIS) for gynecological patients, but not for their caregivers.
The same pattern was observed for parents and bereaved caregivers.
An exception is the caregivers of breast cancer patients, who showed a
positive correlation between education and distress. Age correlated
with caregiver distress in the study on spousal bereavement only. Gen¬
der could not be tested in the breast cancer and gynecological studies
because the caregiver samples were entirely male. In the study of eld¬
erly caregivers female patients showed greater distress, and in the
bereavement study female spouses showed greater distress and grief.
Social support was found to be highly related to the distress of par¬
ents of adult patients and to their adjustment to the illness. Overall,
caregiver personal resources were found to have a less significant direct
effect on caregiver distress, while patient resources have an impact on
the patient’s distress, constituting a mediating factor between patient
resources and caregiver distress and functioning.
One of the most innovative aspects of the original research in the

book is the comparison of levels of distress, functioning, and coping of
cancer patients and their caregivers using normative and community
sample data. These comparisons suggest that patient and caregiver dis¬
tress levels differ across samples. For example, parent caregivers to
adult children with cancer, as well as bereaved spouses, showed a high¬
er level of distress than the norm on some of the BSI subscales. In con¬
trast, spouses of breast and gynecological patients showed normative
levels of distress. These differences may be the result of the different
phases during which the studies were conducted, as well as the function
of caregiver gender (male spouses in the later two studies). The data
lead to a recommendation that future research assess patients and their
caregivers along several critical points in time during the stages and
phases of the illness.
INTERVENTION
Social workers, psychologists, psychiatrists, doctors, and nurses

who treat cancer patients constantly evaluate the effectiveness of psy¬
chosocial intervention approaches for cancer patients and family care¬
givers. Awareness in this area has been heightened in recent years in
light of the lengthening of survival time for cancer patients.
A basic question is whether intervention is more effective for both
cancer patient and family caregiver together or separately. The inter¬
vention model presented in the book (Chapter 8, p. 237) relies on the
problem-solving intervention model (Nezu et al., 1998) and on a sup¬
port group for the family caregiver separately. However, the authors’
findings point to the benefit of developing intervention programs for
the family caregiver and the patient together in the initial and the fol¬
low-up phases of the illness in light of the consistent indications of a
strong association between caregiver distress and patient distress. The
importance of treating the family caregiver and the patient together
stems not only from the obvious caregiver role, but also from the care¬
giver’s input in medical decisions which may affect the
caregiver-patient relationship, the doctor-patient-caregiver relation¬
ship and the patient’s length of survival. Nevertheless, whether a joint
intervention arrangement is more effective during the recurrence or
the terminal phases, in contrast to the initial phase, is questionable in

light of the patient’s special needs, which may embarrass the patient in
this situation.
The authors’ research devotes less attention to the impact of formal
community resources on cancer caregiver distress, under the assump¬
tion that such services are routinely provided to the caregiver atid the
patient to fill the anticipated needs arising from the diagnosis and med¬
ical treatment. However, the caregiver bereavement process, when
support is even more vital, is often overlooked. Intervention in this
phase is discussed in the book in detail (Chapter 7).
ETHICAL ISSUES
While health-profession literature contains extensive research

about the doctor-patient relationship, discussed in this book as falling
into three categories—paternalism, consumerism/informed, and mutu¬
al/sharing—the doctor-patient-caregiver relationship is a neglected
area in the profession. The conventional view, exemplified by a study
by Charles et al. (1997), is that the decision-making process during ill¬
ness is a dyadic one, involving the doctor and the patient. The medical
process in the case of cancer, however, involves three parties—the doc¬
tor, the patient, and the caregiver-in a complex relationship. Differ¬
ences in point of view, perceptions, and needs affect each party’s
distress.
The role of the third party—the caregiver—becomes all the more
important when the patient is incompetent and the caregiver is
involved in medical decisions related to stopping treatment. Even then,
however, both the doctor and the caregiver must be cognizant of the
patient’s wishes from a moral as well as legal point of view. Special
care must be taken by the doctor in every type of relationship model
not to be excessively influenced by the caregiver’s opinion, especially
in terms of how much medical information to convey to the patient, or
in cases when there is disagreement between the patient and the care¬
giver over a medical decision.
Summary and Conclusions Til
FUTURE DIRECTIONS FOR FAMILY

CAREGIVER RESEARCH
Concern for the caregiver extends beyond the boundaries of the

clinical professions. At some point it touches every family and raises
psychological, sociological, and ethical questions. While research on
the caregiver in the case of chronic illness has been productive, espe¬
cially in identifying and describing risk factors, fewer studies have been
undertaken about the family caregiver in the case of cancer, although
some progress has been made in recent years.
Expanded research is needed on the impact of caregiving on cancer
caregiver burnout and health problems during all phases of the illness.
Research on the family caregiver when cancer occurs in immigrant and
minority populations is another important issue to explore in light of
the need to cope with the additional ongoing stress of cultural acclima¬
tization. Further research is required in the area of secondary caregiv¬
er distress, with a focus on the secondary-primary caregiver
relationship. Last, the doctor-patient-caregiver relationship merits
study during the entire course of the illness and not only in the medical
decision-making process.
The book highlights the issue of the particular distress of the cancer
family caregiver, who plays a vital role at a time of increasing longevi¬
ty generally and the prolongation of life for cancer patients. In exam¬
ining this role, and the inevitable distress involved in it, the book seeks
to illuminate the caregiver’s often overlooked needs in supporting the
cancer patient’s coping with the illness. Hopefully, this study will help
both clinicians and researchers meet those needs.
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267-283.
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encounter: What does it mean? (or it takes at least two to tango). Social Science and
Medicine, 44{5), 681-692.
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NAME INDEX
A Bennett, P, 139
Benson, J., 259
Abakoumkin, G., 190 Ben-Zur, H, ix, 75, 77, 104, 138, 142-44,
Abi-Hashem, N., 230 160, 161, 183, 205, 272
Adams, B. N., 166, 168, 182, 183 Berg-Weger, M., 16
Addington-Hall,J., 192 Berger, S., 16, 19
Aguilera, D. C., 224 Biegel, D. E., vii-ix, 7, 11, 12, 19, 22, 125,
Albertsson, M., 46, 47 190, 202, 270
Allen, S. A., 41, 52 Bierhals, A.J., 190, 202
Alspaugh, M. E. L., 14 Bijttebier,P., 74
Amirkhan,J. H., 74 Blake, H., 12
Andersen, B. L., 109, 119, 120 Blake-Mortimer,J., 224
Anderson-Hanley, G., 215 Blanchard, C., 217
Andersson, S.J., 46, 47 Blanchard, C. G., 258
Andrews, L., 261 Bloom, J. R., 31, 32, 89, 140
Archibald, P. G., 15 Boehmer, U., 253
Arkin, A. M., 232 Bolger, N., 31, 91, 140
Auchincloss, S. S., 108 Bookwala,J., 17, 19
Aymanns, P., 31 Booth, A., 8
Boss, P, 19
B Botelho, R.J., 251
Bowlby,J., 183, 233, 234
Babineau, R., 191, 204 Bowman, K., 190, 228
Baider, L, 47-49, 67, 89, 90, 121, 125, 137, Brabant, S., 165
140, 165, 181, 183 Braden, C., 31, 167
Barausch, A. S., 125, 131 Brady, S. S., 32
Barer, B. M., 7 Breitbart, W., 35
Barnett, R. C., 17, 18, 104 Bressi, C., 217
Bass, D. M., 190, 228 Bretherton, I., 234
Baum, A., 32 Breznitz, S., 118
Beach, S. R. H., 182 Brintzenhofeszoc, K., 213
Beckerman, N. L., 166 Britten, N., 259
Bedard, M., 22 Brody, E. M., 42, 82
Beem, E. E., 230 Bron, D., 237
Beeson, R., 17, 21 Brown, I.J., 258
Beisecker, A., 34 Brown, M. A., 6, 40
Bengtson, V. L., 166, 172 Brownell, A., 6
279
Bruce, M. L., 189 Cone,J. W., 167

Butin, D., 216 Connell, H., 139
Butow, P. N., 259, 261 Constantino, R. E., 229
Cooney, T. M„ 166, 182, 183
C Coons, H. L., 65, 109
Cooper, E. T., 119
Cafasso, L., 131 Comey, R. H, 109, 110 „
Cain, E. N., 109 Counselman, E. F., 217
Campora, E., 34 Coyne,J. C., 139
Canetti, L., 67 Cross, S. E., 132
Canning, R. D., 19, 20, 167 Cunningham, A. J., 217
Capone, M. A., 109, 120 Cwikel, J. G., 31
Carey, P. J., 50
Carr-Gregg, M., 165 D
Carter, C. A., 46, 217
Carter, R. E., 46, 217 Dagan, A., 193, 202
Carver, C. S., ix, 16, 36, 74, 88, 138, 141, David, H. P., 33
143, 160, 161 Davis-Ali, S. H„ 52, 167, 181
Cary, M., 215, 216 Deimling, G. T., 14, 82
Caserta, M. S., 229, 240 DeMaso, D. R., 239
Cassileth, B. R., 44, 45, 47, 125 Derogatis, L. R., ix, 65-68, 72, 73, 80, 89,
Catalano, D., 15 93, 112, 113, 129, 140, 170, 171, 194, 196,
Cavanaugh,J. C., 17, 18 270, 271
Cemey, M. S., 239 Dodge, K. L., 141, 160
Chandra, P. S., 34 Donaldson, C., 12, 17, 22
Chang, B. L., 215 Downie, R. S., 192, 251
Change, A., 190, 202 Draper, B. M., 21
Charles, C., 251, 252, 254, 276 Dua,J., 215, 216
Chen,J. H., 190, 202 Dunkel-Schetter, C., 31, 138, 167
Chochinov, H. M., 189 Dunkin,J.J., 215
Christensen, D. N., 47 Dunkle, R. E., 181
Clair, J. M., 1820, 167, 168
Clark, J. A., 253 E
Clark, L., 15, 17
Clark, M. C., 12 Ell, K. O., 45, 47, 50, 52
Clayton, P.J., 189 Endler, N. S., 74
Clear)', P., 66 Epping-Jordan,J. E., 37, 87-89, 92, 138-40,
Clipp, E. C., 19, 20 159
Cobliner, W. G., 165, 181 Essa, M., 237
Cochran, C. D., 67 Everson, S. A., 138
Cochran, S. D., 109, 110, 119, 120 Ey, S., 45, 49, 50, 67
Coe, M., 20
Cohen, C. A., 216 F
Cohen, F., 132, 167, 168
Cohen, P., 54, 191, 204 Fallowfield, L., 34
Collins, C., 17 Fawzy, I. F., 213
Compas, B. C., 32 Faw'zy, N. W., 213
Compas, B. E., 37, 89, 124, 137, 138, 140, Fengler, A. P., 125
150 Ferrell, B., 123, 204
Name Index 281
Ferrell, B. R., 123, 204 Grant, J. S., 16, 20

Field, N. P., 191 Gray,J., 75
Fisher, J. Z., 165, 181 Greenberg, D. B., 34
Fishman, S. B., 183 Greer, S., 213
Fiske, A., 123 Greger, H. A., 192
Folkman, S., viii, ix, 9-11, 18, 22, 32, 33, Guttman, D., 181
36, 74, 88 91, 120, 137, 138, 140, 160, Gwyther, L. P., 15, 42
270
Ford, G. R., 17 H
Forte, J. A., 240
Fraley, R. C., 234 Hacker, N. F., 109, 119, 120
Francis, V. M., 72 Hagedoom, M., 49
Freeman, S.J., 230 Hagen, B., 216
Freud, S., 232, 234 Haidet, P., 259
Friedman, L. C., 138 Hale, W. D., 67
Fuller, S., 53 Haley, W. E., vii, 7, 9, 12, 15, 20
Funch, D. P., 31, 165, 181 Hall,J. A., 250, 251
Hamilton, V., 237
G Hamlett, K. W., 165
Hann, D. M., 213
Gallagher, E., 216 Hannum,J. W., 47, 52, 141
Gallagher-Thompson, D., 15, 19, 217 Hanratty,J. F., 261
Gannon, P., 258 Hansen, D., 11
Ganz, P. A., 124 Hardy, V., 216
Garcia, H. B., 32 Harris, R., 109, 120
Garwick, A. W., 214 Harrison, J., 89, 124
Gass, K., 190, 202 Hartman, M., 15, 17
Gauthier, J., 238, 240 Harwood, D. G., 18
George, L. K., 15, 19, 20, 42 Hasselkus, B. R., 125, 126
Gerber, I., 237 Haug, M., 250, 254
Gervasio, A. H., 14, 17 Hayden,J. M., 15, 16, 124
Gignac, M. A. M., 10, 11, 16 Hays,J. C., 191, 204
Gilbar, O., ix, 110, 123, 124, 127, 140, 165, Hedge, B., 75
180, 181, 183, 193, 202, 205, 224 Heinz, P. M., 264
Gilhooly, M. L., 125, 126 Helgeson, V. S., 32
Giraldi, T., 31 Henderson, S., 51
Given, B., 90 Henevy, J. P., 66
Given, C. W., 43, 44, 89, 90 Hewett, L. J., 216
Glasdam, S., 45, 49, 50 Hill, R., 11
Glassman, M., 47 Hinton, J., 191, 204
Glosser, G., 216 Hoffman, R. G., 45, 46, 48, 50, 53
Good, R. S., 109, 120 Holland, J. C., 124
Goodrich, N., 125 Hook, C. C., 259
Goodrich, T. J., 250 Hooker, K., 20, 52, 168
Gotay, C. C., 110 Horowitz, A., 8
Gottesman, D., 33 Horowitz, M. J., 237
Gottlieb, B. H., 10, 11, 16 Hoskins, C. N., 31, 41, 45, 53, 90, 103,
Grandstaff, N. W, 53, 165, 181 137
House, J. S., 133 L

Houts, P. S., 47, 224
Hull, M. M., 42 Labrecque, M. S., 258
Larson, J., 191, 204, 240
I Lascalza, M., 213
Laurie, G. T., 260
Invin, M., 189 Lavee, Y., 197
Lavin, B., 250, 254
J Lawrence, R. H., 21
Lawton, M. P„ 81, 82, 124, 127
Jacobs, J., 214 Lazaraus, R. S., viii, ix, 9-11, 18, 22, 32, 33,
Jacobs, S., 189 36, 74, 88, 91, 118, 120, 132, 137, 138,
Jacobsen, P. B., 33, 213 140, 160, 167, 168, 270
James, R. H., 110 Lederberg, M. S., 38
Jamison, K. R., 31, 165, 167, 181 Lee, C., 17
Jansen, C., 44, 49, 51 Lee, P. C. Y., 32
Jaye, A., 253 Leiber, L., 131
Jenkins, J. H., 15, 17, 19, 22, 166 Levesque, L., 15, 20, 21
Johnson, C. L., 7, 15, 125 Lev, S., ix
Joiner,J. G., 165, 181 Lev-Wiesel, R., 141, 160
Jones, R., 17 Lewis, F. M., 39, 54, 89, 137, 165
Jones, S. L., 15, 18 Lewis, M. S., 33
Joyce, J., 15 Li, L. W., 16
Lichtman, R. R., 54, 139, 141, 160, 165, 181
K Lieberman, M. A., 229, 241
Liken, M. A., 20
Kaasalainen, S., 216 Lin, N., 6
Kalayjian, A. S., 46 Lincoln, N. B., 12
Kaplan, De-Nour, A., 47, 48, 81, 89, 90, 121, Linzer, N., 183
125, 137, 140, 165, 181, 183 Littlewood,J., 190, 228
Kaplan, L., 19 Logsdon, R. G., 12
Kaplan, R. M., 7 Long, S. O., 249
Karlsen, S., 192 Loomis, L. S., 8
Kaufer, D. I., 12, 17 Lopez, M. C., 81, 113
Keintz, M. K„ 123 Lovestone, S., 21
Keller, M., 52, 139, 167 Lowell, B., 229
Kelly, B., 191, 205 Lowenstein, A., 181
Kelly, M., 192 Lowenstein, R., 83
Kiecolt-Glaser,J„ 19 Lubin, B., 73
Kinney,J. M., 18 Lund, D. A., 189, 190, 229, 240
Kissan, D. W., 217, 228
Kleber, R. J., 237 M
Knight, R. G., 14, 15, 17, 20
Knobf, M. T., 34, 35, 38, 218, 219 Maguire, P., 37, 124
Komblith, A. B., 109 Maisiak, R., 124
Kreutzer.J. S., 13, 14, 17 Maissie, M.J., 124
Rrisqanson. L.J., 42, 45, 48-51, 53 Manderson, L., 33
Kiibler-Ross, E., 35, 226 Mangen, D.J., 166, 168, 183
Kurtz, M. E., 44, 46, 47 Manne, S., 31, 44, 47, 52-54, 139, 140
Name Index 283
Marks, N. F., 8 Nicholas, D. R., 217

Markus, H. R., 132 Nieboer, A., 190, 202
Marsh, N. V, 14, 15, 22, 166, 183 Nijboer, C., 43
Marshall, W., 238, 240 Nolen-Hoeksema, S., 191, 204, 240
Martikainen, R, 189 Norgard, T., 181
Martocchio, B., 214 Northouse, L. L., 31, 46, 48, 49, 52, 67,
Mason,J. K., 250 89-91, 103, 113, 125, 165, 167, 181, 183,
Massie,J. M., 87, 88, 257 217
Massie, M. Y., 87, 88 Nye, L., 166
Maunsell, E., 31
Mawson, D., 228, 240 O
McCall-Smith, R. A., 250
McCartney, C. F., 108 O’Hoy, K. M., 109
McCorkle, R., 43 Oberst, M. T., 6, 47, 50, 51, 110, 125
McCubbin, FI., 125 Ohaeri,J. U., 50
McGinn, F., 166 Oktay, J. S., 216
McHugh, R, 34 Olson, D. H., 196
Melges, F. T., 239 Ong, L. L. M., 34
Melisaratos, N., 66, 68, 72, 89, 93, 129, 170, Osowiecki, D. M., 37, 89, 137, 138, 140, 150
194
Menninger, K., 181 P
Messicki,J., 224
Mettlin, C., 31, 165, 181 Pakenham, K. I., 16, 22, 139
Meyers, A. W., 240 Paraskevaidis, E., 124
Miaskowski, C., 45 Parker,J. D. A., 74
Miley, W. M., 31 Parkes, C. M., 233, 240, 241
Miller, B., 131 Parsons, T., 79, 166, 250, 252
Miller, E., 20, 22, 166, 167, 183 Patrick, J. H., 15, 16, 124
Miller, R, 19 Patterson, J., 125
Miller, R A., 216 Patterson, J. M., 214
Miller, R. B., 166, 168, 183 Payne, S., 43, 49, 50
Minuchin, S., 168 Pearson,J., 126
Mishel, M., 31, 167 Peteet,J. R., 261
Monahan, D. J., 20, 52, 168 Peters-Golden, H., 217
Moorey, S., 213 Pierce, G. R., 7
Moos, B. S., 51 Pillemer, K., 8
Moos, R. H, 11, 51, 91, 120, 140, 159, 204, Pimentel, F. L., 259
270 Plumb, M., 124
Mor, V., 49, 51, 124, 125 Postone, N., 213
Morse, J. M., 41, 90 Pot, A. M., 15
Motzer, S. A., 217 Poulshock, S. W., 14, 82
Murphy, K., 229 Powazki, R. D., 52
Muurinen, J., 53 Powers, D. V., 15, 19, 217
Pratt, C. C., 132
N Prigerson, H. G., 189, 190, 202
Prosch, M. C., 216
Neufeld, A., 20 Pruchno, R. A., 192
Nezu, A. M., 223, 275 Ptacek, J. T., 47, 53, 89, 90, 140, 141, 160
Nezu, C. M., 37 Pye, C., 238
Schwartz, C. E., 44
Q,
Scott, D. W., 47
Quigley, D. G., 190, 202 Seale, C., 192
Segal, D. L, 238
R Selye, H., 66
Semiyen, J. K., 12, 14
Ramsey, R. W., 239 Servaes, P., 215
Randall, F., 192, 251 Shaffer, D. R., 6
Rankin, E. D., 15 Shanas, E., 42
Raphael, B., 230, 232, 236, 237 Shands, M. E., 41, 90
Rapp, S. R., 20 Shaver, P. R., 234
Rauktis, M. E., 20 Shuchter, S., 189
Raveis, V. H., 43, 228 Shuchter, S. R., 238
Reaby, L. L., 257 Shumaker, S. A., 6
Refaeli, R., 180 Siegel, K., 41
Reich, J. W., 228 Silverman, R R., 241
Reiss, D., 37 Skene, L., 260
Richards, M., 216 Skerrett, K., 54
Riffle, K., 216 Smith, D. A., 139
Roberts, C. S., 109 Smith, K., 202
Roberts, J., 217 Snider, R R., 36
Robinson-Whelen, S., 19 Soerensen, S., 21
Rodriguez, J. R., 45, 46, 48, 50, 53 Soller, W., 31
Rose, S. K., 16, 17 Soskolne, V., 81
Rosik, C., 190, 202 Spaid, W. M., 125, 131
Roter, D. L., 250, 251 Sparks, M. B., 17
Rowland, J. H., 19, 87, 88, 257 Speer, D. C., 192
Rushing, W., 166 Spencer, D., 87
Spencer, R M., ix
S Spencer, S. M., 31, 38, 39, 108, 137-40
Spiegel, D., 89, 140
Sabatini, L., 229 Spira, J. L., 213, 224
Saklofske, D., 138 Stanton, A. L., 36
Sales, E., vii-ix, 40, 44, 54, 167, 270 Steele, L., 190, 202
Sanders, C. M., 191 Steffen, A. M, 8, 16, 19
Sarafmo, E. R, 213 Stephens, M. A. R, 8
Sarason, B. R., 167 Stephens, R M., 66
Savitz, K. L., 66, 67, 73, 140 Stem, K., 257
Schaefer, J. A., 11, 191, 120, 140, 159, 204, Stetz, K., 6, 40, 131
204, 270 Stetz, K. M., 220
Schatz, M. S., 190, 202 Stewart, B. J., 15
Scheier, M., 138 Stommel, M., 8
Scheier, M. F., 74 Straker, N., 213
Schene, A. H., 16, 17 Stroebe, M. S., 190-92, 202, 203, 232, 234
Schrader, S. S., 166, 172 Stroebe, W„ 190-92, 203, 232, 234
Schulz, R., vii-ix, 17, 19, 20, 39, 54 Stuckey,J. C., 42
Schumacher, J. G., 15, 17, 19, 22, 16 Stull, D. E., 42
Schumacher, K. L., 49, 52, 183 Suitor, J., 8
Schut, H. A. W., 228 Swain, M. A., 89, 113, 165, 181, 183
Name Index 285
Swarte, N. B., 264 Walsh-Burke, K., 217

Swensen, C. H., 53 Wang, C. M., 250
Ward, S., 230
T Watson, M., 33, 38, 217
Webb, C., 17, 20, 167, 168
Tan, G. W. K., 109 Weihs, K., 37
Tardy, C. H., 7 Weisman, A. D., 31, 165, 167, 181
Taylor, S. E., 33 Weitz, R., 165
Teri, C, 12, 17, 20 Wellisch, D., 44, 45, 49, 50, 53, 125
Terry, D.J., 138 Werner, S., 83
Thompson, L. W., 190, 202 Wexler, D., 216
Tierney, A. J., 34 White, L., 165
Toseland, R., 216 Whitlatch, C.J., 82, 216
Triemstra, M., 14, 19 Wijeratne, C., 21
Turco, R., 237 Wilker, H. I., 229
Turner, H. A., 167, 168 Wilkes, E., 262
Turvey, C. L., 189, 191, 192, 202, 204 Williamson, G. M., 6
Wilson, R A, 52, 167
U Wilson, S., 41, 90
Winslow, B. W., 21
Uhlenberg, P., 166, 182, 183 Worby, C. M, 191, 204
Worden, J. W., 31, 165, 167, 181, 190, 192,
V 228-30, 236
Wortman, C. B., 190, 228
Vachon, M. L., 43, 53, 191, 204 Wright, L. K., 216
van Den Boom, F. M., 264 Wuest, J., 20
Veach, T., 42
Veach, T. A., 217 Y
Vertommen, H., 74
Vess, J. D., 54 Yalom,J., 229
Vetter, R H., 12 Yancey, D., 192
Vinokur, A. D., 88 Yates, M. E., 19, 21
Voelkl,J. E, 215, 216
Volkan, V. D., 236 Z
Volkonen, T., 189
Vollrath, M., 75 Zahlis, E. H, 41, 90
Zarit, S. H., 14, 43, 82, 124-27, 132, 215, 216,
W 270
Zautra, A.J., 228
Wagner, M. K., 32 Zeidner, M., 75, 77, 138, 143, 144
Walker, A. J., 132 Zhao, B., 215
Walker, L. G., 31 Zick, C. D., 202
Walls, N., 240 Zimet, G. D., 51, 78, 79, 171
Walsh, D., 52 Zisook, S., 189, 191, 204, 238
.
SUBJECT INDEX
A parent, 167
spouse, 167
ABCX coping-with-stress model, viii, 11-15, social support, 6-7, 19-21, 52-54, 89, 110,
22, 269-70 118, 120, 124-26, 131-33, 139, 140,
family system stressors, 11-15, 38-40 167, 202-5
caregiver health crises, 12 Adult child caregiver distress study, 168-84
caregiver personal resources, ix, 11, hypotheses and research aims, 168, 180
15-21, 38- 40, 43, 48-51, 88-89, (see also summary)
109-10, 120, 133, 138, 190-91 measurement instruments
caregiver stressors, 11, 38-40, 189-05 Brief Symptom Inventory (BSI), 170
caregiving perceptions, 12, 14 Contact Between Generation Battery
Acceptance, 76-78, 145, 147, 152, 153, 157, (CGB) Scale, 172
158 demographic and medical question¬
appraisal, coping, distress relationship, naire, 173-74
36-37 Multidimensional Scale of Perceived
caregiver coping strategy, 16, 22, 218-22 Social Support (MSPSS), 171-72
Active coping, 76-78, 145, 147, 152, 153, Psychosocial Adjustment (PSA),
157, 158 Psychosocial Adjustment of Physical Ill¬
Active illness ness Scale (PAIS), 171
stressors vs. chronic, 22-23, 213-22 methodology, 169-74
Acute stress (see also Chronic stress) model, testing, 178-80
definition, 10, 22 overview of purpose, 168
Adjust to the loss (see Bereavement process) overview of results, 174-78
Adjustment to illness testing hypothesis, 178-80
appraisal, coping, distress relationship, domestic environment, 174
36-37, 218-22 health care orientation, 174
Adjuvant psychology therapy, 213 (see also vocational environment, 174
Bereavement process) parent adjustment factors, 174-84
Adjuvant treatment depression, 174, 180-81
chemotherapy, 34, 87, 94, 128 fear of death of child, 180
Adult child cancer, 165-84 (see also social support, 177, 179, 181
Caregiver intervention) patient adjustment factors, 174-78
impact of illness on parent, 165 anxiety, 174, 180
AIDS, 165-66 depression, 174
caregiver distress, correlation, social support, 177
167-68 somatization, 174, 180
friend, 167 summary, 180-84
287
Adult child-parent relationships, dimensions Anxiety, 71, 95, 97, 113, 115, 176, 196, 198
of, 166, 181-84 (see also Depression)
affectional, 166 and caregiving, 12, 16-20, 22-23, 37, 39,
associational, 166 43
consensual, 166 and problem-solving, 9, 12, 16-19, 20,
functional, 166 22-23, 37, 39, 46
goal oriented, 166 depression ^
normative, 166 care receiver, 32-37
protective instincts, 182-83 caregiver, 12, 16-19, 20, 22-23, 43
psychosocial-physiological correlation, terminal phase, 35, 221-22
182 Apathy, 22
support, forms of continued, 166, 183-84 Appraisals (Primary/Secondary)
baby-sitting, 166 antecedents
emotional, 166 environmental variables, 10, 46
financial, 166, 226 personal resources, ix, 11, 15—21, 38—
instrumental, 166 40, 43, 48-51, 88-89, 109-10, 120,
social support and caregiving of patient, 133,138, 190-91
6-7, 19-21, 52-54, 89, 110, 118, personal variables, 10, 22
120, 124-26, 131-33, 139, 140, 167, coping modes, viii, 9, 14-15, 22-23, 46
202-5 emotion focused, 9-11, 16, 22, 37, 46,
social support for parent caregivers, 74, 126, 138, 141, 160, 229
167-68 (see also Adult child caregiv¬ problem focused, 9, 16, 22, 37, 39, 46,
er distress study) 74, 126, 138, 160, 229
Advanced cancer definitions, 9, 46
terminal phase, 35, 221-22 primary/secondary, 9, 137-41
Affective-emotional reactions, 39 (see also reappraisal, 9, 36
Coping-With-Stress) environmental variables, 9, 10
Age evaluation and correlation with well¬
caregiver well-being, 16, 18, 50 being, 15-16
spousal distress, 18, 50 formal aspects of situation, 10
elderly, 18, 50 Lazarus-Folkman stress and coping model,
middle-aged, 18, 50 viii, 9-11, 22, 137-41
young, 18, 50 personal variables, 9, 10, 22
AIDS primary/secondary appraisals (defini¬
adult children and caregiver distress, tions), 9, 137-38
165-66 reappraisal (definition), 9, 36
stigma, 166 Assessment agreement grief (see Bereave¬
stressors for caregivers, 6 ment process)
Alzheimer’s, viii, 5, 6, 14, 22, 43, 125, Assistive understanding, 236-37 (see also
215-17 Bereavement therapy)
caregiver burden, perceptions of, 14, 43, Attachment theories of pathological grief,
125 233-42 (see also Pathological
caregiver intervention program, 215-17 grief)
caregiver stressors, 6, 22, 43, 125 theories of, 232-33
Amputation, 33 absent, delayed, excessive, prolonged
Anger, 22, 87, 108, 218, 226, 241 grief, 234-35
Antidepressant, 238 (see also Depression) attachment, 233-35
Subject Index 289
Bowlby’s thesis on bonds, 233 Behavioral concerns, 39 (see also Coping

causal sequences, 233-34 With Stress)
separation anxiety, 233-35 Behavioral disengagement, 76-78, 145, 147,
substitute attachments, 234 152, 153, 157-59
Freud’s libidinal energy models Benign breast disease, 46, 90
hypercathexis, 232 Bereavement counseling, 228-42 (see also
working through, 232, 238 Bereavement therapy)
Hamilton’s suspended state of mourn¬ altered access and intimacy, 230
ing, 237 cultural, religious practices, 230
Autonomy, patient, 249-65 (see also Doctor- definition, 230
cancer patient relationship) delivery of instrumental care, 230
caregiver dependency, x, 249-65 emotional challenge of suffering, 230
caregiver role in medical decisions, x, 38, farewell process, 230
250 relationship, assessing, 230-31
ensuring, x, 249-50 separation, 230
experimental treatments, x, 249 therapy, 231-42
medical coercion, 250-51 cognitive-behavioral therapy, 238-40
patient independency, 249-65 group intervention, 240-42
physician authority, disregard, 250-51 pathological grief, 190, 231-35
relationship models, 251-56 psychotherapy process, 235-38
consumerism, 251, 253-55 Bereavement process, 189-205, 228-42
mutuality, 251, 255-56 communication with dying spouse, 191,
paternalism, 251-53 193, 230
summary, 256-57 death, mode and place of, 191-92
right to halt treatment, 249, 262-65 accident, 191-92
withholding care, 249, 263-64 home, 192, 193
Autonomy and caregiver involvement, hospice, 192
257-62 nursing home, 192
confidentiality, 257-59 grief, stages of
caregiver’s rights, 260-61 acceptance, 226
medical information, right to, 259-62 anger, 218, 226
caregiver’s rights 260, 261 bargaining, 226
doctor’s role, 261-62 denial, 218, 226
patient’s rights, 259-62 depression, 226
recurrence of illness, 261-62 guilt, feelings of, 87, 108, 218, 226,
withholding information, 261-62 241
patient’s rights, 259-60 intervention program, 228-42
withholding care, 249, 263-64 counseling, 230-42
Avoidance overview, 228-30
caregiver coping strategy, 11, 16, 46, 139 mourning phases
Avoidance situation anger, 190, 228
breast cancer chemotherapy, 94, 128, 139 depression, 190, 228
recovery, 190, 228
B reorganization, 190, 228
shock, 190, 228
Bargaining, 226 overview, 189-92
Behavior and Adjustment rating scales (BA), chronic illness, 5, 190
81 bereavement, 190
Behavior problems, 6, 216 terminal illness, 35, 189-90, 221-22
bereavement prior to death, 190 Bowlby’s thesis on bonds, 233

relief, 192 causal sequences, 233-34
personal resources, ix, 11, 15-21, 38- 40, separation anxiety, 233-35
43, 48-51, 88-89, 109-10, 120, 133, substitute attachments, 234
138,190-91 Brain cancer
age, 190 caregiver distress, 45
gender, 190 caregiver support, 52 (see also Spousal sup¬
post-bereavement port)
recovery, 190, 228 Brain injury, traumatic
reorganization, 190, 228 caregiver, roles of, 17-18, 22
spouse caregiver distress study BRCA1, 260
hypotheses and research aims, BRCA2, 260
192-93 Breast-conserving surgery
measurement instruments, caregiver distress, 45
Brief Symptom Inventory (BSI), ix, Breast cancer
66-73, 93, 112, 129, 144, 170, body image, 33-34, 87, 88
194-96, 270 caregiver distress, 45, 48-51, 87-105,
ENRICH, 196-97 137-61
Psychosocial Adjustment to Physical detection, processes, 87-88
Illness Scale (PAIS), 196 fine-needle aspiration, 87
Texas Revised Inventory of Grief lumpectomy, 87, 94
(TRIG) Scale, 196 mammogram, 87, 94
methodology, 193-97 self-exam, 87
overview of purpose, 192-93 incidence, 87
overview of results, 197-201 marital communications, 52-54
comparisons with community sam¬ marriage quality and stress management,
ple, testing hypothesis, 197-201 52-53, 137
summary, 201-5 metastatic, 35, 44, 89
widow vs. widower, 193 death, anticipation of, 35
Bereavement therapy, 226 (see also Grief) psychological responses, 35, 44, 89,
absent, delayed, excessive, prolonged 139
grief, 234-35 patient distress and caregiver correlation,
categories of, 234-35 47-48, 87-89,137-41
stages of, 226 personal resources, Lx, 11, 15-21,38-40,
therapeutic approaches, 235-42 43, 48-51, 88-89, 109-10, 120, 133,
short-term psychotherapy, 235-38 138, 190-91
assistive understanding, 236-37 psychological adjustment, 36-37, 45, 47,
brief exposure intervention, 238 87-105, 137-41
crisis therapy, 237 age group factors, 88
hypnosis, 238 body image, 33-34, 88
re-grief phases, 236 family reaction, 89
suspended state of mourning, 237 guilt feelings, 87, 218, 226
trauma desensitization, 237-38 isolation, 87
Body image recurrence fears, viii, 35, 44, 87
treatment symptoms sexual relationship, 88, 137
chemotherapy, 34, 87, 88, 94, 128 stigma, 87
drugs and neurotoxicity, 34, 87, 88 treatment side-effects, 88, 137
radiotherapy, 34, 87, 88 hair loss, 88
Bondage to the dead, 236, 238 weight change, 88
Subject Index 291
psychological adjustment, coping, 88-89, spouse adjustment factors, 89-91

137-41 summary, 103-5
age group, 88 Brief crisis counseling, 224-28
belief structure, 89 Brief Symptom Inventory (BSI), ix, 66-73,
education, 88 93, 112, 129, 144, 170, 194-96, 270
optimism, 16, 46, 89, 138, 160 [see also Response-oriented measure¬
personal resources, ix, 11, 15-21,38- ment)
40, 43, 48-51, 88-89, 109-10, 120, assessment focus, 66
133, 138, 190-91 breast cancer stress response, 89-90, 93,
social support, 89 167
spousal adjustment, 89-91, 110, 118-121, cancer caregivers stress measurement,
137-41 66-73, 112, 129
distress erosion of support level, 91 (see correlation between patient mood and
also Spousal support) caregiver distress, 47-48
fear of loss, 90 gynecological cancer stress response,
newly diagnosed, 89-90 112
powerlessness feelings, 90, 133, 137, overview of measurement tool, 66-68
139 psychiatric disorders and stress, 66, 67
well-being, 90 response-oriented theories, 65-66
spousal emotional support, 32, 48, 91, 140, measurement format, 66-73
167 scores and indices
treatment decisions, active participation, General Severity Index, 67
88, 249-65 Positive Symptom Distress Index, 67
caregiver role, 249-50, 257-64 Positive Symptom Total, 67
incompetent patient, 262-64 study analysis
withholding, 249, 262-65 Israeli BSI norms, 68-73
treatment processes, 87-88, 94, 128 Burden (subjective/objective)
breast reconstruction, 87 care receiver
chemotherapy, 87, 88, 94, 128 depression of care receiver, 32-37, 43
hormonal therapy, 87, 88, 94 family member distress, 44
lumpectomy, 87, 94 palliative care, 44, 49
mastectomy, 87, 94 psychosocial problems, 44-45
radiation, 87, 88, 94, 128 caregiver
side effects of therapy, 87 daughters, 15-17, 42
Breast cancer study, 87-105 depression, 12, 16-19, 20, 22-23, 43,
caregiver, primary, 137-61 139
hypotheses and research aims, 91-92 health, impact of caregiving, 14-15,
measurement instruments, 93-95 22,42-43
Brief Symptom Inventory (BSI), 93 inner resources, 15, 43
demographic and medical question¬ mental illness, implications, 15, 22
naire, 94-95 perceptions of, 14-15, 43
Psychosocial Adjustment (PSA), 94 personal resources, ix, 11, 15-21,38-
methodology, 92-96 40, 43, 48-51, 88-89, 109-10, 120,
overview of purpose, 87, 91-92 133, 138, 190-91
overview of results, 96-103 stressors and well-being, 15, 22, 43
comparisons with community sample, contagion and spillover, 104
100-3 informal social support, 20
testing hypothesis, 97, 98, 99 model of strain, 39-40
patient adjustment factors, 88-89 psychosocial impact of cancer, 44-45
caregiver appraisals and coping process, problem-solving focused, 9, 16, 22, 37,
46, 140 39, 46, 74, 126, 138, 160, 229
patient coping, 46-47, 140 death sentence perception, 32
patient distress, 47-48, 140 denial, 36, 159, 218, 226
spousal distress depression, 12, 16-19, 20, 22-23, 32-37,
stage of cancer and survival rate, 45, 43, 139, 226
139 disengagement coping, 37, 159
Burden measurement, 82-83, 127-29 gynecological, 108-21
Caregiver Level of Burden Scale, 82, 83, intrusive thought, 37
127 optimism, 16, 37, 46, 89, 138, 160
Instrumental Activities of Daily Living overview of caregivers, vii-x, 22-23, 31,
(IADL), 127-28 54, 217-28
overview of phases, viii, 32-35, 37-39, 54,
C 217- 22
duration of phases, viii, 218-22
Cancer (see also Cancer caregivers) stress qualifiers, 32-35, 37-39, 218-22
breast (see also Breast cancer) (see also Caregiver intervention)
marriage quality and stress manage¬ diagnosis, 32-33, 218
ment, 52-53 follow-up, 35, 43, 87, 94, 128, 218-20
psychological adjustment, 36-37, 45, 47 post follow-up, 34-35
emotion-focused disengagement, 37, recurrence, viii, 35, 43, 87, 94, 128,
159, 160 218- 21
social support, , 6-7, 19-21, 52-54, 89, surgical intervention, 33, 87, 218-19
110, 118, 120, 124-26, 131-33, 139, terminal stage, 35, 221-22
140, 167, 202-5 treatment protocols, 33-34, 87-88,
cancer, caregiver strain model, 39-40 218-19
contagion and spillover, 104 personal resources, ix, 11, 15-21, 38- 40,
cancer, caregiving phases for terminal 43, 48-51, 88-89, 109-10, 120, 133,
patients, 40, 221-22 138, 190-91
cancer themes, 39-40 age, 18, 50
affective-emotional reactions, 39, 141 education, 18, 50
bargaining, 226 gender, 17-18, 49-50
behavioral concerns, 39 mastery, 19
social support, 6-7, 19-21, 52-54, 89, socioeconomic status, 51, 202
110, 118, 120, 124-26, 131-33, 139, quality of life, 32, 263-64
140, 167, 202-5 incidence, viii, 87, 108
caregiver burden, 14-15, 22, 42-43 social support, 31-32 (see also Spousal sup¬
types of cancer, treatment and distress, port)
45 stress, acute/chronic, 32-35, 37-39
caregiver loss of employment, 38-39 endogenous process, 32-35, 37-39
coping mechanisms (see also Grief) exogenous process, 32-35, 37-39
acceptance, 226 stress, type/event qualifiers, 32-35,
anger, 218, 226 37-39
appraisal, strategies, distress, 36-37, duration, 32
137-40 frequency, 32
bargaining, 218, 226 circumstances, 32
denial, 218, 226 conditions, 32
depression, 226 stressful situation
Subject Index 293
care receiver, 32-35, 37-39 patient’s adjustment to cancer, 31

caregiver, 32-35, 37-39 spousal needs, 39, 167
treatment stress Cancer caregivers, coping studies (see also
active vs. passive decision-making, 34, Caregivers)
38-39 breast cancer, 141-61
caregiver distress, 45 coping strategies, assessing, 151-52
diagnosis to initiation of intervention, hypotheses and research aims, 141
32-35 measurement instruments
follow-up, 35, 43, 87, 94, 128, 218-20 Brief Symptom Inventory (BSI), ix,
recurrence/metastasis, viii, 35, 43, 87 66-73, 93, 112, 129, 144, 170,
terminal phase, 35, 221-22 194-96,270
victimization, 225 demographic and medical question¬
Cancer caregivers (see also Caregivers) naire, 144
appraisals, 137-41 Psychosocial Adjustment (PSA), 144
burden, perceptions of, 14-15, 137-61 Self-Coping and Perceived Other-Cop-
cancer patient, viii, ix, 22-23, 31-32, ing Questionnaires, 143-45
37-54 methodology, 143-46
cancer types, treatment and caregiver dis¬ overview of purpose, 141-43
tress, 45, 225 overview of results, 156-61
conflict types, 8-9 (see also Conflict) comparisons with community sample,
multigenerational caregiving, 8, 38 144-46, 154-56
multiple roles, 8, 38, 226-27 testing hypothesis, 148-51
role relationships, changing, 6, 8-9, 15, testing model, 152-54
17-18, 38, 44, 48, 49, 132, 165-66, patient adjustment factors, 156-61
226-27, 230-31, 250 psychological distress, 156-61
contagion and spillover, 104 emotion-focused coping, 9-11, 16, 22,
coping mechanisms/models, 37-40 37, 39, 46, 74, 126, 138, 159, 160,
problem-solving focused, 9, 16, 22, 37, 229
39, 46, 74, 126, 138, 160, 229 patient vs. spouse, 159, 160
resolution of problems as phases spouse adjustment factors, 156-61
emerge, 39 summary, 156-61
depression, 12, 16-19, 20, 22-23, 37, 43, Cancer caregivers, stress studies (see also
139 Caregivers)
distress felt, v, viii, 8, 12, 16-19, 20, 22-23, breast cancer spouse, 87-105, 167 (see also
37-39 Breast cancer study)
income, loss of employment, 38-39, 51 elderly cancer spouse, 123-33 (see also
familial, 31, 37-54 Elderly cancer study)
overview, vii-x, 5-6, 8-9, 22-23, 31-32, gynecological cancer spouse, 108-121 (see
37-39, 54 also Gynecological cancer study)
primary role, 8-9, 38 Cancer, gynecological (see Gynecological
gatekeeper, 8, 38-39 cancer)
patient’s ability to cope, 31, 103-5 Cancer, phase implications, viii, 22-23,
role definition vs. conflict, 7-9 32-35,137
secondary role, 8-9 body image, 33-34, 88
social support, viii, 6-7, 19-21, 31, 39, recurrence
52-54, 89, 110, 118, 120, 124-26, fear of implications, viii, 35, 43, 87
131-33, 139, 140, 167, 202-5 psychological responses, 35, 44, 87, 139
breast cancer, 31-32, 89 social support as coping resources, 35,
definitions, 6-7 89 (see also Spousal support)
stress role relationships, changing, 6, 8-9, 15,

acute vs. chronic, 32-35 17-18, 38, 44, 48, 49, 132, 165-66,
exogenous vs. endogenous, 32-35 226-27, 250
passive vs. active decision-makers, 34, depression, 12, 16-19, 20, 22-23, 37-39,
38 43, 139
type of cancer and caregiver distress, 45 distress felt, v, viii, 8, 38
treatment doctor-patient relationship^249-65
intervention techniques, 34-35, 225 family caregiver, 249
physical symptoms, 33-34 incompetent patient, 262-64
types of and caregiver distress, 45, 225 emotional support, 32, 38-39, 140-41
Cancer, phases of overview, 5-6, 8-9, 37-39, 54
adjuvant medical treatment, viii, 33-35, primary role, 8-9
38, 225 gatekeeper, 8
body image, 33-34, 88 role definition vs. conflict, 7-9
diagnosis, viii, 32-33 secondary role, 8-9
follow-up, viii, 35, 43, 87, 94, 128, social support, viii, 6-7, 51-52, 89 (see also
218-20 Spousal support)
recurrence, viii, 35, 43, 87 definitions, 6-7, 51-52
surgical intervention, viii, 33 stressors, 5, 6, 10, 12-14, 15, 22-23,
terminal phase, viii, 22, 35, 221-22 32-35, 37-39
Care receiver Caregiver age
age and onset of dependency, vii elderly burden, 123-33
depression, 12, 16-19, 20, 22-23, 35, 43, Caregiver appraisal, 40, 46
139 coping process, 46, 90, 133, 137, 139
relationship with caregiver, 20, 230-31 husband coping mechanisms, 46
relationship with doctor and caregiver, wife coping mechanisms, 46
249-65 Caregiver burden, 6, 14-15, 22, 42-43,
social support (see also Spousal support) 123-33, 213-42 (see also Caregiver
breast cancer, 31-32, 89, 167 health)
overview, 19-21, 54 Caregiver Level of Burden Scale, 82-83,
Care receiver state (physical/mental) 127
acute vs. chronic stress, 32-35 chronic/terminal illness, 6, 35, 127,
depression, 32-35 213-27, 221-22, 269-77
Caregiver (primary/secondary) (see also dependency, 6, 127 (see also Patient auton¬
Stressors) omy)
burden, perceptions of, 14-15, 37-39, elderly cancer patients, 123-33 (see also
137-61 Elderly cancer study)
family/social support, 51-52, 89 role strain, 6, 15, 17-18, 38, 44, 48, 49,
cancer patient, viii, ix, 22-23, 31-32, 132, 165-66, 226-27, 250
37-54, 137-61 (see also Cancer phas¬ social/family support, 51-52, 127, 217-27,
es) 269-77
types of, medical treatment, and care¬ social support, viii, 6-7, 19-21, 31, 39,
giver distress, 45, 225 52-54, 89, 110, 118, 120, 124-26,
conflict types, 8-9 [see also Conflict) 131-33, 139, 140, 167, 202-5
multigenerational caregiving, 8 Caregiver burnout
multiple roles, 6, 8, 15, 17-18, 38, 44, role stain, 6, 15, 17-18, 38, 44, 48, 49, 132,
48, 49, 132, 165-66, 226-27, 250 165-66, 226-27, 250
Subject Index 29 5
support services, viii, 6-7, 19-21, 31, 39, Brief Symptom Inventory (BSI), ix,
52-54, 89, 110, 118, 120, 124-26, 66-73, 93, 112, 129, 144, 170,
131-33, 139, 140, 167, 202-5 194-96, 270
Caregiver coping process (see also Coping- COPE scale ix, x, 74-75, 144, 223, 271
With-Stress models) demographic and medical question¬
cancer patient (see also Cancer forms) naire, 94-95
breast, 137-61 Psychosocial Adjustment (PSA), 94
elderly, 123-33 Psychological Adjustment to Illness
gynecological, 108-21 Scale (PAIS), 270
coping strategy and well-being, 16 (see also methodology, 92-96, 270-71
Caregiver intervention) model of caregiver distress, 37- 43, 270
elderly spouse with cancer, 123-33 model of strain, 39-40
emotion-focused strategies, 9-11, 16, 22, overview of purpose, 87, 91-92, 269-70
37, 39, 46, 74, 126, 138, 141, 160, overview of results, 96-103, 271-76
229 comparisons with community sample,
problem-solving focused, 9, 16, 22, 37, 39, 100-3
46, 74, 126, 138, 160, 223-24, 229 testing hypothesis, 97, 98, 99, 271-75
role strain, 6, 15, 17-18, 38, 44, 48, 49, patient adjustment factors, 88-89, 270.
132, 165-66, 226-27, 250 272-76
themes, 39-40 personal resources, ix, 11, 15-21, 38- 40,
affective and emotional reactions, 39, 43, 48-51, 88-89, 109-10, 120, 133,
141, 160 138,190-91
behavioral concerns, 39 social support, informal-formal, 19-21, 89
family system model, 11-15, 38-40, spouse adjustment factors, 89-91, 167,
223-32 (see also Family system 272-76
model) summaries, 54, 103-5, 269-78
Caregiver distress model psychological-psychosocial instruments
ABCX model, viii, 11-15, 22, 269-70 (see Measurement instruments)
breast cancer study, 87-105, 270 (see also terminal illness caregiving phases, 40,
Distress, caregiver model) 218-22
cancer coping themes, 49, 271-75 becoming caregiver, 40
affective/emotional reactions, 39, 141, death, resolution, 40
160, 271-75 midwife death, 40
behavioral concerns, 39, 271-75 taking charge, 40
social support needs for variables, 44-54
caregiver/patient, viii, 6-7, 19-21, Caregiver-doctor relationship
31,39, 52-54, 89, 110, 118, 120, medical decisions, x, 38, 249-65
124-26, 131-33, 139, 140, 167, autonomy of patient, 249-65
202-5, 274-75 terminal phase recurrence, 253
types of, medical treatment, and dis¬ Caregiver, familial
tress, 45, 225, 271-72 Alzheimer’s, vii, 5-8, 14, 22, 43
caregiver/patient distress relationship, 40, cancer, vii-x, 22-23, 31-54, 218-22
230-31 emotional support, 32, 38-39, 40,
depression, 12, 16-19, 20, 22-23 140-41
elderly cancer patient, 123-33 patient-doctor-caregiver relationship,
factors affecting, viii, 39-40 249-65
income, loss of employment, 38-39, 51 role alterations, 40-42, 132, 226-27
measurement instruments, 93-95, 270-71 role strain, 6, 15, 17-18, 38, 44, 48, 49,
(see also Measurement instruments) 132, 165-66, 226-27, 250
types of, medical treatment, and dis¬ phases of disease, 218-27

tress, 45,225 diagnosis, 32-33, 218
chemotherapy, 44, 94 128 follow-up, 35, 43, 87, 94, 128,
psychosocial distress, 44 218-20
cognitive impairment, 5-8, 14, 22, 43 post follow-up, 34-35
coping strategies, ix, 76-78, 145, 147, 152, recurrence, viii, 35, 43, 87, 220-21
153, 157, 158 surgical intervention, §3, 87^218—19
dementia, vii, 5-8, 14, 22, 43 terminal stage, 35, 221-22 {see also
distress model, 271-75 Bereavement process)
normative and community samples, 275 treatment protocols, 33-34, 87-88,
elderly spouse, 123-33 218-19
mental illness/retardation, vii, 14, 15, 22 stress qualifiers, 32-35, 37-39, 218-22
prolonged life span with chronic/terminal Caring for Aging Relatives Group
illness, vii (CARG), 216
psychological, psychosocial care solution, crisis counseling model, 215-17
vii cancer patients, 217
relationships between coping-with-cancer intervention pro¬
caregiver adjustment, x, 38-39, 230-31 gram, 217-27
caregiver personal resources, ix, 11, chronically ill patients, 215-17 {see also
15-21, 38-40, 43, 48-51, 88-89, Dementia; Alzheimer’s)
190-91 behavioral problems, 216
patient’s psychological distress, ix, 39, communication skills, 217
48-50 daycare relief, 215
variables, overview of spousal, 40-42, 54 legal services, 215
Caregiver, female, 17-18, 49 {see also Spouse management strategies, 216
caregiver) respite services, 216
Caregiver health specified number of sessions, 215
burden, 14-15, 22, 42-43 dementia-Alzheimer's patients, viii, 5, 6,
overview, 42-43 14, 22, 43, 125, 215-17 {see also
Caregiver, help for (rce Caregiver interven¬ Dementia; Alzheimer’s)
tion; Caregiver burden) network therapy, 216
Caregiver intervention support group, 216-17
Alzheimer’s-dementia patients, viii, 5, 6, telecommunications interventions, 216
14, 22, 43, 125, 215-17 {see also distress, reducing, x, 213-42
Alzheimer’s) APT, 213
bereaved, 228-42 also Bereaved, care¬ bereavement process, x, 213-42
giver intervention) cognitive behavioral intervention,
network therapy, 216 213
support group, 216-17, 224-28 group therapy, 213
telecommunications interventions, 216 individual program re phases of illness,
cancer patients, caregiver programs, x
217-27 lifestyle, 213
communication skills, 217-27 psychodynamic psychotherapy, 213
coping-with-cancer program, 217-27 psychosocial program for caregiver dis¬
overview of caregivers, vii-x, 22-23, tress, 213-42
31, 54, 217-28 social support, viii, x, 3, 6-7, 9, 19-21,
overview of phases, viii, 32-35, 37-39, 31, 39, 40, 52-54, 89, 110, 118, 120,
54, 217-22 124-26, 131-33, 137, 139, 140, 167,
duration of phases, viii, 218-22 202-5
Subject Index 297
family therapy, x, 213-15 coping strategies, ix, 46-47, 137-61

diagnosis and treatment phases, 214-15, elderly cancer spouse, 123-33
225 gynecological cancer spouse, 108-21
family system model, 223-32 (see also overview of spousal variables, 40-42, 54
Family system model) social support needs, viii, 3, 6-7, 9, 19-21,
overview of system model, 214-15 31, 39, 40, 52-54, 89, 110, 118, 120,
vs. caregiver intervention, 215 124-26, 131-33, 137, 139, 140, 167,
problem-solving model, 223-28 (see also 202-5
Problem-solving caregiver model) stress and well-being evaluation, 15, 46-47
COPE, ix, x, 74-75, 144, 223, 271 Caregiver stress, coping (see also Primary
overview of elements, 223-24 caregiver)
support group model, 224-27 (see also Sup¬ appraisal process, 137-41
port group caregiver model) cancer hierarchy
overview of session breakdown, community, 38
224-27 disease and treatment, 38, 225
Caregiver, medical decisions patient’s family, 38, 40, 137
involvement, x, 38, 40, 213,249-52, patient’s well-being, 38, 137
257-59,260-62, 276-77 cancer patient
incompetent patient, 262-64 breast, 137-61
Caregiver needs, 41-42, 213-42, 269-75 elderly, 123-33
social support, viii, 3, 6-7, 9, 19-21, 31, 39, gynecological, 108-21
40, 52-54, 89, 110, 118, 120, cancer stages, 137-38
124-26, 131-33, 137, 139, 140, 167, cancer, terminal phases, 40
202-5, 275 becoming caregiver, 40
Caregiver, parent (see also Adult child can¬ death, resolution, 40
cer) midwife death, 40
adult children, 165-84 taking charge, 40
Caregiver rights, 260-62, 276 caregiver burden, 14-15, 22, 42-43
Caregiver role (see also Caregiver distress; caregiver/patient distress relationship, 40,
Caregiver stressor) 41, 103-5, 137-41, 230-31
cancer, familial role, ix, 40 contagion and spillover, 104
coping-with-stress models patient reaction to illness, 104
Biegel ABCX, viii, 11-15, 22, 260-70 chronic stress state, 10-11, 37-39
BSI subscales, ix, 48 cognitive impairment, 6, 12-14, 15, 22, 43
Lazarus-Folkman, viii, 9-11, 22, 137-41 coping skills, 12, 15-19, 22, 37-39, 137-61
(see also Stress models) depression, 12, 16-19, 20, 22-23, 36-37
role conflict, 8-9 family role alterations, 6, 38-42, 132,
role definition, 7-9 226-27
role strain, 6, 15, 17-18, 38, 44, 48, 49, income decline, 6, 38, 51
132, 165-66, 226-27, 250 caregiver loss of employment, 38-39,
structure and progression, viii 51
Caregiver role, multiple independence decrease, 6, 10, 38
gender implication, 17-18 information, amassing new, 38
role strain, 6, 15, 17-18, 38, 44, 48, 49, loss of previous relationship, 6, 37, 38, 52,
132, 165-66, 226-27, 250 230-31
stress/distress and well-being, 18 medical expenses, 38
Caregiver, spouse (see also Spousal support) patient condition, monitoring, 38
breast cancer spouse, 87-105, 137-61, 167 patient dependency, 5, 6, 12-14, 15, 38
perceived pressure, 15-16 adult child-parent relationships, dimen¬

role strain, 6, 15, 17-18, 38, 44, 48, 49, sions of
132, 165-66, 226-27, 250 affectional, 166
severity of illness, 12, 38, 137 associational, 166
severity of injury, 13 consensual, 166
social support, 15, 38, 89 functional, 166
spousal caregiver, 40-42, 46-47, 103-5 goal oriented, 166
distress relationship to receiver distress, normative, 166
46-47 Children, chronically ill
overview of spousal variables, 40-42, caregivers, 5
47, 54 Chronic illness, 5, 190
spousal support, viii, 3, 6-7, 9, 19-21, Chronic stress
31, 39, 40, 52-54, 89, 110, 118, 120, appraisal and coping mechanisms, 10-11,
124-26, 131-33, 137, 139, 140, 167, 37-39,190
202-5 coping goals, 11
threat to life of loved one, 6, 10, 32-35, emotion-focused, 9-11, 16, 22, 37, 46,
37 74, 126, 138, 141, 160, 229
variables, 40-48 problem-focused,9, 11, 22, 37, 39, 46,
care receiver role, 44-48 74, 126, 139, 160, 229
caregiver role, 40-44 definition, 10
Caregiving (see Caregivers) resources, external and internal, ix, 11, 15,
Caregiving vs. social support, 6-7 140
caregiver definitions, 7 Cognitive behavioral intervention, 159
social support definitions, 6-7 psychosocial intervention for caregiver
spousal support needs, viii, 3, 6-7, 9, distress, 213-42
19-21, 31, 39, 40, 52-54, 89, 110, Cognitive impairment
118, 120, 124-26, 131-33, 137, 139, appraisals
140, 167, 202-5 stress and well-being evaluations, 15-16,
Caregiving problems 22
emotion-focused, 9-11, 16, 22, 46, 74, caregivers
126, 138, 141, 160, 229 burden, perceptions of, 14-15, 22,
problem-solving focused, 9, 16, 22, 47, 39, 42-43
46, 74, 126, 138, 160, 229 impact as stressor, 12-14, 22, 42-43
role strain, 6, 15, 17-18, 38, 44, 48, 49, care receivers
132, 165-66, 226-27, 250 Alzheimer’s, viii, 5-8, 14, 22, 43
Caring for Aging Relatives Group (CARG), dementia, viii, 5-8, 14, 22, 43
216 Cognitive model of coping with stress
Cervical cancer (see Gynecological cancer) ABCX coping-with-stress model, viii,
Chemotherapy, 34, 94, 128 11-15,22, 269-70
physical symptoms, 34 Lazaraus-Folkman model, viii, 9-11, 22,
psychosocial distress of familial caregiver, 137-40, 159
44 Colostomy, 33
side effects, 34 Communication skill (see Spousal communi¬
stress, implicit, 33 cation)
Children Communication with ill patient, 249-65
adult child caregiver distress, 165-84 Communication with the dying spouses,
AIDS patients, 165-66 249-65
caregiver role and stressors, 15, 165-66 Community services (see Support services)
Subject Index 299
Competencies problem focused, 9, 16, 22, 37, 39, 46, 74,

doctor-patient relationship, 262-65 76, 126, 138, 160, 229
caregiver decisions, 262-65 Ways of Coping (Folkman and Lazarus),
treatment continuation decisions, 263 74
Confidentiality, 257-59 Coping Strategies Indicator (CSI), 74
legal implications, 258-59 avoidance-oriented, 74, 139
legal reviews, 258-59 problem-solving, 74
medical information, right to know, social support seeking, 74
259-61 Coping With Cancer (CWC)
disclosure of, 261-62 Coping-With-Stress models
incompetent patient, 262-64 ABCX model, viii, 11-15, 22, 269
Conflict cancer, caregiver strain model, 39-40
role definition, 7-8 cancer, caregiving phases for terminal
types of, for caregiver, 8-9 patients, 40, 221-22
Consent (see Patient autonomy) cancer themes, 39-40
Consultation (see Doctor-cancer patient rela¬ affective-emotional reactions, 39
tionship) behavioral concerns, 39
Consumerism, x, 249-56 social support, 39, 89, 140
Contact Between Generations Battery, 79-80 family system stressors, 11-12, 38-40
parent-child relationships, 79-80 caregiver health crises, 12
group solidarity, 79 caregiver personal, ix, 11
social cohesion, 79 caregiver stressors, 11-12, 38-40 (see
variables assessed, 79-80 also Caregiver distress)
Contemporary medical care (see Treatment) caregiving perceptions, 12
Control (see Mastery) Lazaraus-Folkman model, viii, 9-11, 22,
COPEScale, ix, x, 74-75, 144, 223 (see also 137-41
Interaction-oriented measures) appraisals, 9, 137-41
assessment of 15 coping strategies, 74-77 coping modes, 9, 39-47, 137-41
emotion-focused coping, 9-11, 16, 22, emotion focused, 9-11, 16, 22, 37, 46,
46, 74, 76, 122, 138, 141, 160, 229 74, 126, 138, 141, 160, 229
problem-focused coping, 9, 16, 22, 37, problem focused, 9, 16, 22, 37, 39,
39, 46, 74, 76, 126, 138, 160, 229 46, 74, 126, 138, 160, 229
stress theory and behavior self-regulation environmental variables, 9, 10
model, 74 formal aspects of situation, 10
study analysis, Israeli coping, 75-77 personal variables, 9, 10, 22
methodology, 75 primary/secondary appraisals (defini¬
trait and state versions, 74 tions), 9
Coping skills reappraisal (definition), 9, 36
emotion focused, 9-11, 16, 22, 46, 74, 76, Cultural, religious practices, 230
122, 138, 141, 160, 229 Current loss, 230
problem focused, 9, 16, 22, 37, 39, 46, 74,
76, 126, 138, 160, 229 D
Coping strategies
COPE Scale, ix, x, 74-75, 144, 223 Daily living
Coping Strategies Indicator (CSI), 74 treatment intervention stressors, 34-35
emotion focused, 9-11, 16, 22, 46, 74, 76, Daughters
122, 138, 141, 160, 229 caregiver strategies, 16, 42
Multidimensional Coping Inventory, 74 cognitive impairment
appraisal outcomes, 15 Distress, caregiver model (see also Caregiver

wishfulness, 16 distress model)
emotion-focused (EF) coping, 9-11, 15, 16, ABCX model, viii, 11-15, 22, 269-70
22, 37, 46, 74, 126, 138, 141, 160, breast cancer study, 87-105, 270 {see also
229 Caregiver distress model)
problem-focused coping, 9, 16, 22, 37, 39, measurement instruments, 93-95,
46, 74, 126, 138, 160, 229 270-71
Death, anticipation of Brief Symptom Inventory (BSI), ix,
cancer recurrence, viii, 35, 43, 87 66-73, 93, 112, 129, 144, 170,
grief, stages of, 226 194-96,270
metastasis, 35, 44 COPE scale, ix, x, 74-75, 144, 223,
Death, saying farewell, 230 {see also Bereave¬ 271
ment process) demographic and medical question¬
Decathect, 232, 238 naire, 94-95
Decision-making Psychosocial Adjustment (PSA), 94
emotion-focused strategies, 9-11, 15, 16, Psychological Adjustment to Illness
22, 36, 37, 46, 74, 126, 138, 141, Scale (PAIS), 270
160, 229 methodology, 92-96, 270-71
passive vs. active, x, 34, 36, 38 model of caregiver distress, 270
problem-solving strategies, 9, 16, 22, 36, overview of purpose, 87, 91-92, 269-70
37, 39, 46, 74, 126, 138, 160, 229 overview of results, 96-103, 271-76
treatment options, 36 comparisons with community sam¬
Delay {see also Bereavement process) ple, 100-3
Dementia testing hypothesis, 97, 98, 99, 271-75
caregiver burden, perceptions of, 14-15, patient adjustment factors, 88-89, 270.
22, 42-43, 125, 215-17 272-76
caregiver intervention program, 215-17 spouse adjustment factors, 89-91, 167,
(see also Caregiver intervention) 272-76
caregiver stress, viii, 5-8, 14, 22, 42-43, summary, 103-5, 269-78
125 cancer coping themes, 49, 271-75
Denial, 36, 76-78, 145, 147, 152, 153, affective/emotional reactions, 39, 141,
157-59, 218, 226 160, 271-75
Dependence {see Caregiver burden; Patient behavioral concerns, 39, 271-75
autonomy) social support needs for
Depression, 71, 95, 97, 113, 115, 176, 196, caregiver/patient, viii, 6-7, 19-21,
198 (see also Caregiver stressor) 31, 39, 52-54, 89, 110, 118, 120,
aging, 123 124-26, 131-33, 139, 140, 167,
caregiver distress, 12, 16-19, 20, 22-23 202-5,274-75
care receiver distress, 32-37, 43 types of, medical treatment, and dis¬
recurrence, viii, 35, 43, 87 tress, 45, 225,271-72
grief, stage of, 226 caregiver/patient distress relationship, 40,
problem-solving and psychological dis¬ 230-31,
tress, 36-37, 46 depression, 12, 16-19, 20, 22-23
Despair, 36, 159, 218, 226 elderly cancer patient, 123-33
Diagnosis phase, 32, 33 {see also Treatment factors affecting, viii, 39-40
phase) income, loss of employment, 38-39, 51
Disclosure of patient information, 249-65 model of strain, 39-40
Subject Index 301
psychological-psychosocial instruments caregiver stress, 18

(see Measurement instruments) dementia, vii, 5-8, 14, 22, 43
social support, informal-formal, 19-21, 89 Elderly cancer patients, 123-33 (see also
terminal illness caregiving phases, 40, Elderly cancer study)
218-22 adjustment process, 123-24, 133
becoming caregiver, 40, 221-22 vs. younger patients, 124
death, resolution, 40, 221-22 age, incidence of disease, 125
midwife death, 40, 221-22 coping and surgical recovery, 125
taking charge, 40, 221-222 aging process
Doctor-cancer patient relationship (see also children, distancing, 123
Caregiver-doctor relationship) demands, confronting new, 123
autonomy of patient, x, 249-56 economic changes, 123
ensuring, x, 249-50 friends, death of, 123
experimental treatments, x, 249 health changes, 123
medical coercion, 250-51 psychiatric disorders, 123
patient independency, 249-65 retirement, 123
physician authority, disregard, 250-51 social status changes, 123
relationship models, 251-56 spouse, loss of, 123
consumerism, x, 251, 253-55 anxiety and sexual functioning, 124
mutuality, x, 251, 255-56 body image, 124
paternalism, x, 251-53 cancers
summary, 256-57 age, incidence of disease, 125
right to halt treatment, 249 caregiver burden of spouse, 124-26
withholding care, 249, 263-64 caregiver distress, 124-26
Dying process, 218-222 (see also Terminal men, 126
phase) objective focus. 126
Dynamic psychotherapy program, 232-42 women, 126
(see also Pathological grief) subjective focus, 126
caregiving and spousal burden, 124-26
E personal resources, ix, 11, 15—21, 38—
40, 43, 48-51, 88-89, 133, 190-91
Education social support, 133, 140
caregiver stress, 18-19 women’s distress, 125-26
personal resources, ix, 11, 15-21, 38- 40, emotional distancing, 126
43, 48-51, 88-89, 190-91 (see also subjective focus, 126
Personal resources) depression, 123, 125
Elderly (see also Elderly cancer patients) detection, processes, 124
aging process advanced stages, 133
children, distancing, 123 health changes, 123
demands, confronting new, 123 functioning impairments, 123
depression, 123 physical limitations, 123
economic changes, 123 incidence, 123, 125
friends, death of, 123 marriage quality and stress management,
health changes, 123 124-26
psychiatric disorders, 123 metastatic
retirement, 123 death, anticipation of, 133
social status changes, 123 psychological responses, 131-33, 139
spouse, loss of, 123 patient distress and caregiver correlation,
Alzheimer’s, viii, 5, 6, 14, 22, 43 126, 133
psychiatric disorders, 123 fear of loss, 133

depression, 123 newly diagnosed, 133
psychological adjustment powerlessness feelings, 90, 133, 137, 139
age group factors, 124 treatment processes
body image, 124 chemotherapy, 34, 94, 124
depression, 123 radiation, 94, 124, 128
fertility problems, 124 side effects of therapy, 124
optimism, 16, 47, 88, 138, 160 surgical removal of tumor, 94, 124
personal resources, ix, 11, 15-21,38- Elderly cancer study, 126-33
40, 43, 48-51, 88-89, 133, 138, hypotheses and research aims, 126
190-91 measurement instruments
sexual relationship and anxiety, 124, Brief Symptom Inventory (BSI), 129
137 Caregiver Level of Burden Scale, 127
social support, 133, 140 (see also Spousal demographic and medical question¬
support) naire, 129
spousal adjustment, 89-91, 110, Instrumental Activities of Daily Living
118-121, 137-61 (IADL), 127-28
treatment side-effects, 88, 124, 137 methodology, 126-27
psychological adjustment, coping overview of purpose, 126
age group,123-24 overview of results, 131-33
distress, relationship, 139, 230-31 testing hypothesis, 129-30
personal resources, ix, 11, 15-21, 38- patient adjustment factors, 131
40, 43, 48-51, 88-89, 133, 138, spouse adjustment factors, 131
190-91 summary, 131-33
social support, 133, 140 {see also Spousal Emotion-focused (EF) coping, 10, 11, 16, 46,
support) 126, 160
severity and prognosis of illness, 125, 131, acceptance, 11, 16, 46
139 avoidance, 11, 16, 46, 139
spousal adjustment, 89-91, 110, 118-121, cognitive impairment, viii, 5, 6, 14, 22, 43,
131, 137-61 125, 215-17
gender related, 131-32 appraisal outcomes, 15, 160
personal resources, ix, 11, 15—21, 38— daughter caregivers, 16, 42
40, 43, 48-51,88-89, 133, 138, humor, 16, 46
190-91 optimism, 16, 46, 89, 138, 160
role strain, 6, 15, 17-18, 38, 44, 48, 49, positive framing, 11, 16, 46
132, 165-66, 226-27, 250 strategies, 16
spousal burden, 123-33, 134-61 vs. problem-focused coping, 16, 37, 39, 46,
caregiver age, 125, 131 126, 160
duration of illness, 125, 131, 139 women, 126
malignancy site, 125 Emotional
personal resources, ix, 11, 15—21, 38— responses by family member, 226
40, 43, 48-51, 88-89, 133, 138, responses by patient, 226
190-91 Emotional pain, 226
spousal emotional support, viii, 3, 6-7, 9, Emotional strain, 226-27
19-21,31,39, 40, 52-54, 89, 110, Emotional support, 76-78, 145, 147, 152,
118, 120, 124-26, 131-33, 137, 139, 153, 157, 158
140, 167, 202-5 Employment (see Personal resources)
distress at erosion of support level, Empowerment (see Pathological grief; Short¬
131-32, 139 term psychotherapy, Support group)
Subject Index 303
Endogenous Financial arrangements (see Personal

acute events leading to chronic stress, resources)
32-33 Financial demands, 226
cancer process, 33 Financial management (see Personal
ongoing environmental demands, 32 resources; Role strain)
ENRICH communication scale, 196 Flooding, 238-39 (see also Guided imagery)
Environmental variables rescheduling of social reinforcement, 238
appraisals, 10 Follow-up phase, 35, 43, 87, 94, 128, 218-20
Escape Formal intervention program
caregiver coping strategy, 16 coping-with-cancer intervention program,
Euthanasia, 241, 264 217-27 (see also Caregiver interven¬
Existential/death counseling (see Bereave¬ tion)
ment counseling; Bereavement psychosocial intervention for caregiver
process) distress, 213-42
Exogenous Formal social support
acute events leading to chronic stress, cancer
32-33 breast, 31-32, 52-53, 89
cancer process, 33 caregiver role
cognitive and affective reexperiencing redesigning, 21
of stressor, 33 community services, 19, 20-21, 51-53, 140
Expected death (see Terminal illness) Freud’s libidinal energy models
Experimental drug (see Patient autonomy) hypercathexis, 232
External resources, ix, 11, 15, 140 overview, 19, 51-54
strain, 6, 15, 17-18, 38, 44, 48, 49, 132,
F 165-66, 226-27, 250
stressors, predictors, 21
Family Environment Scale, 51 working through, 232, 238
Family grief therapy, 228
emotion vs. problem-focused, 229 G
overview, 228
studies, results, 228-30 Gatekeeper, 8-9 (see also Caregivers (pri¬
Family relationship mary/ secondary)
treatment intervention, 34-35, 230-31 Gender
Family system model, 223-32 caregiver, personal resources, ix, 11,
family system stressors, 11-15, 38-40 15-21, 38- 40, 43, 48-51, 88-89,
caregiver health crises, 12 133, 138, 190-91
caregiver personal resources, ix, 11, Gender differences
15-21, 38- 40, 43, 48-51, 88-89, caregiver role, 17-18,49-50,54
133, 138, 190-91 Gender role, theory
caregiver stressors, 11, 38-40 overview, 17-18
caregiving perceptions, 12, 14 Gender role, traditional
Farewell, 230 (see also Bereavement process) caregiver roles, 17-18, 49-50
Fatigue (see Cancer, phase implications) General Adaptation Syndrome (GAS), 66
Fear, 230 General Severity Index (GSI), 67, 71, 95, 97,
Fear of loss 113, 115, 176, 196, 198 (see also Brief
caregiver fear, 52, 230 Symptom Inventory)
helplessness in outcome, 52, 220, 230 Genetic, 260
Female caregiver Getting acquainted (see Psychoeducational
role, gender-related, 17-18, 49 intervention)
Goals, 227 patient distress and caregiver correla¬

setting in intervention support group, 227 tion, 110, 120, 131-32, 139
Grief (see also Bereavement process) quality of life, 109, 110, 263-64
categories, 234 personal resources, ix, 11, 15-21,38-40,
cognitive-behavioral therapy, 238-40 43, 48-51, 88-89, 109-10, 120, 133,
group intervention, 240-42 138, 190-91
mourning stages, 190, 228 psychological adjustment (see also Grief)
short-term psychotherapy, 234-38 acceptance 226
stages of, 226 age group factors, 110, 120
Grief, absent, 235 anger, 226
Grief-resolution therapy, 190, 232-42 (see bargaining, 226
also Pathological grief) body image, 110
Grief symptom (see Bereavement process) denial, 118, 159, 226
Grief task (see Bereavement process) depression, 108-10, 226
Group therapy, 240-42 education, 120
mutual support categories, 241 fertility problems, 110
self-help groups, 240 guilt feelings, 108, 226
widow-to-widow, 241 isolation, 108, 109
Guardian, 260, 262-64 menopausal symptoms, 109
Guided imagery/mouming, 239-40 recurrence fears, 108, 118
phases of grief-resolution therapy, 239 repression, 118
present-time imagery, 239 risk factors, 108
unfinished business resolution, 239-40 sexual relationship and anxiety, 109-10,
Guilt feelings, 87, 108, 218, 226, 241 114, 119, 120
Gynecological cancer, 108-21 without partners and anxiety, 110
anxiety and sexual functioning, 109, 114 shame, 109
body image, 109-10 stigma, 108
cancers treatment side-effects, 108
cervical, 108 infertility, 109
fallopian tubes, 108 menopause, premature, 109
ovarian, 108 sexual dysfunction, 109
uterine, 108 urination, 109
vaginal, 108 psychological adjustment, coping, 109-10,
vulvar, 108 120
caregiver distress, 110, 120-21, 131-32, patient adjustment, 120
139 (see also Gynecological cancer sexual functioning, 109-10, 114, 119,
study) 120
cervical cancer, 108 sexual functioning and pain, 109
depression and sexual functioning, 109, spousal adjustment, 89-91, 110, 118-121,
114 131, 137-61
detection, processes fear of loss, 110, 118-20
advanced stages, 108 prognosis information, 118
screening, 108 sexual relationship, 109-110, 114, 119
incidence, 108 social support, 120-21, 140 (see also
marriage quality and stress management, Spousal support)
110 spousal emotional support, 110, 118, 120,
metastatic 124-26, 131-33, 139, 140
death, anticipation of, 118 treatment processes
psychological responses, 109-10, 139 chemotherapy, 34, 94, 120, 128
Subject Index 305
radiation, 94, 120, 128 I

reconstruction, 108
side effects of therapy, 94, 120 Idealization of the deceased, 236, 238
surgical removal of tumor, 94, 108, 120 Illness, progress
Gynecological cancer study, 111-21 stressors of chronic vs. acute, viii, 11-12,
hypotheses and research aims, 111 22-23
measurement instruments Immune system, 213
Brief Symptom Inventory (BSI), 112 Immunotherapy, 33, 213
demographic and medical question¬ stress, implicit, 33
naire, 114 Incompetent patient, 262-64
Psychosocial Adjustment to Illness Scale Informal support network (see also Personal
(PAIS), 112-13 resources)
methodology, 111 cancer
overview of purpose, 118-21 breast, 31-32
overview of results, 114 social support, viii, 6-7, 19-21, 31, 39,
testing hypothesis, 114-16, 116-18 52-54, 89, 110, 118, 120, 124-26,
patient adjustment factors, 118-21 131-33, 139, 140, 167, 202-5
spouse adjustment factors, 118-21 cognitive impairment, viii, 5, 6, 14, 22, 43,
summary, 118-21 125, 215-17
caregivers with informal support, 20, 22
H distress predictors, 20, 22
family, relatives, friends, 19—21, 39
Hair loss, 88, 124 just knowing, 20
Hamilton’s suspended state of mourning, vs. formal support, 19, 20
237 Information exchange, 218-22, 224-28
Helplessness, 52, 220, 230 (see also Hopeless¬ Informed consent, 249-62
ness) Inhibition (see Breast cancer; Gynecological
Hemophilia cancer)
caregiver burden, 14-15, 22, 42-43 Initial phase, 225
High-risk population, 166 Initial reaction to diagnosis, 225
Home care, 192, 221-22 Institutionalized care
Home Care Guide for Cancer, 224 caregiver role, redesigning, 20
Homebound cancer patients, 192, 221-22 predictors of caregiver stress, 21
Homicide (see Euthanasia) Instrumental Activities of Daily Living
Hopelessness, 52, 220, 230 (see also Helpless¬ (IADL), 81-83, 127
ness) elderly persons’ functioning, 81-83, 127
Hormonal therapy personal function assessment, 81-83, 127
stress, implicit, 33, 87, 88, 94 overview, 81-83
Hospitalization, 192-93 (see also Caregiver self-maintenance scale, 81
burden) Instrumental support, 76-78, 145, 147, 152,
Hostility, 22, 71, 95, 97, 113, 115, 176, 196, 153, 157, 158, 230
198 Instrumental task, 230
Household tasks (see Caregiver burden) Insulting, 190, 228
Humor, 16, 76-78, 145, 147, 152, 153, 157, Interaction-oriented measurement
158 COPE scale ix, x, 74-75, 144, 223, 271
caregiver coping strategy, 16 coping, 74-75 (see also Lazarus and Folk-
Hypercathexis, 232 (see also Pathological man)
grief) stress response
Hypnosis therapy, 238 cognitive, 73, 159
perceptual, 73 Legal point of view, 257-62

personality traits, 73 Length of survival, 45, 139
personal variables, 73 Libidinal (see Pathological grief)
overview, 73-75 Life satisfaction
methodology, 74-75 social support networks, 19-21, 140
study analysis breast cancer, 31-32, 89, 167
Israeli coping, 74-77 depression in care receivers, 32-35
Internal resources, ix, 11, 15, 140 (see also depression in caregivers, 12, 16—19, 20,
Personal resources) 22-23
Interpersonal sensitivity, 71, 95, 97, 113, 115, informal support vs. formal, 20-21, 110,
176, 196, 198, 249-65 118, 120, 124-26, 131-33, 139, 140
Interpsychic conflict, 190, 238 (see also social engagement of caregivers, 20
Pathological grief) Life span
Intervention group quality of life with chronic/terminal ill¬
psychosocial program for caregiver dis¬ ness, vii, 32, 263-64
tress, 213-42 Life threatening illness
Intervention program acute vs. chronic stress, care receiver,
psychosocial program for caregiver dis¬ 32-35
tress, 213-42 chronic stress to caregiver, 6, 10, 32-35
Interview Schedule for Social Interaction, 51 Locus of control
Intimacy, 34, 39, 81, 88, 90, 109-110, 114, caregiver stress, 19
230 Loss, current (see Bereavement process)
Intrusive thought (see Caregiver burden) Loss of appetite (see Cancer, phases of;
Involvement (see Caregiver) Depression)
Loss of energy (see Cancer, phases of;
J Depression)
Loss of interest (see Cancer, phases of;
Justification stage (see Bereavement process; Depression)
Pathological grief) Lung cancer
caregiver distress, 45, 110, 120, 131-32,
L 139
Latent guilt, 226, 241 M

Lazaraus-Folkman stress and coping model,
viii, 9-11, 22, 32, 74-75, 137-41 Male
appraisals, 9, 32, 137 caregiver role, gender-based, 17-18
cancer, 32, 137-61 expression of painful emotions, 18
coping modes, 9, 74-75, 137-41 Marital communication
emotion-focused, 9-11, 16, 46, 74, 126, breast cancer support, 53-54, 167
138, 160, 229 quality of relationship, impact, 52-54
problem-focused, 9, 16, 37, 39, 46, 74, terminal phase, 54, 221-22
126, 138, 160, 229 Marital relationship
environmental variables, 9, 10 caregiver role
formal aspects of situation, 10 age and spousal caregiving, 18, 42
personal variables, 9, 10, 22 implications for burden, 14-15, 22,
primary/secondary appraisals (defini¬ 42-43, 52-54
tions), 9, 32 changing role, 9, 40-43, 52-54
reappraisal (definition), 9, 36 dependency re intimate care, 9, 14
Ways of Coping measure, 74 dissatisfaction, impact of, 53
Subject Index 307
personal time restrictions, 53, 226 Self-Coping and Perceived Other-Coping

quality of, 52-54 Questionnaires, 143-45
spousal criticism, 53 Texas Revised Inventory of Grief (TRIG)
spousal support, 20-21, 52-54, 110, 118, Scale, 196
120, 124-26, 131-33, 139, 140, 167 Ways of Coping, 74
strain, 6, 15, 17-18, 38, 44, 48, 49, 132, Medical condition
165-66, 226-27, 250 caregiver, implications for, 14-15
Mastectomy Medical expenses
cancer victimization, 225 cancer hierarchy, 38
marriage, quality of and distress, 52-53 Medical questionnaire (see Measurement
psychological adjustment, 36-37, 45, 47, instrument)
52 Medical treatment phase
social support, 52, 89, 140 acute stress, 33
Mastery (see also Personal resources) chronic stress, 33-35
caregiver, stress, 19, 51 Melancholia, 14
Meaningless suicide, 35 Mental disengagement, 76-78, 145, 147, 152,
Measurement instruments (see also Specific 153, 157, 158
instrument) Mental disturbance (see Cognitive impair¬
Behavior and Adjustment rating scale ment)
(BA), 81 Mental illness
Brief Symptom Inventory (PSI), ix, 66-68, caregiver
93, 112, 129, 144, 170, 194-96, 270 depression, 12, 16-19, 20, 22-23
Caregiver Level of Burden Scale, 82, 83, stressors and well-being, 15, 22
127 informal social support, 20, 140
Contact Between Generations, 79-80, Mental Status Questionnaire, 81
172-73 Metastasis
COPE ix, x, 74-75, 144, 223, 271 death, anticipation of, 35
creativity, optimism, planning, expert psychological responses, 35, 44, 89, 139
information, 74-75, 77, 144, 223 Middle-aged
Coping Strategies Inventory, 74 caregiver stress, 18
demographic and medical questionnaires, Mood, 14
94, 114, 129, 144, 173-74 Morphogenetic (developmental) force, 214
ENRICH, 196 Morphostatic (regulatory) force, 214
General Severity Index, 71, 95, 97, 113, Mourning (see Bereavement process)
115, 176, 196, 198 Multidimensional Coping Inventory (MCI),
Instrumental Activities of Daily Living 74 (see also COPE Scale)
(IADL) scale, 81, 127-28 avoidance-oriented style, 74
Mental Status Questionnaire, 81 emotion-oriented style, 74, 160
Multidimensional Coping Inventory task-oriented style, 74, 160
(MCI), 74 Multidimensional Scale of Perceived Social
Multidimensional Scale of Perceived Support (MSPSS), 51, 78-79
Social Support (MSPSS), 78-80, 171 social support assessment, 78-79
Physical Classification Scale (PC), 81 Multigenerational caregiving, 8
Physical Self-Maintenance Scale (PSMS), Multiple sclerosis
81 caregiver stress, 14, 22
Psychosocial Adjustment (PSA), 73, 94, patient care, 14
144 Multiple losses [see Pathological grief;
Psychosocial Adjustment to Illness Scale Bereavement process)
(PAIS), 80-81, 112-13, 171, 196, 270 Mutual support, 226
80S Cancrr and ths Famih Carrgizrr
Mutual support groups. 224 28 .w -ti&‘ >up- separation anxiety . 233-3o

port group) substitute attachments. 234
Mutuality, 249-56 Freud's Hbidinal energy models
hvpercathexis. 232
N working through. 232, 238
Hamilton's suspended state of mourn¬
Nausea *»r Cancer, phases of ing. 237
Network therapy .w Support groups therapy, application of bereavement tech¬
Normal grief v.w Bereav ement process' niques, 234-35
cognitive-behavioral techniques.
O " 238-40
flooding. 238-39
Obsessve-eompulsive, 71, 95, 97. 115. 115. group intervention, 240-42
176. 196, 198 self-help groups. 240
Offspring .see Garegiv ers, familial social support, 240-41
Optimism widow -to-widow program, 241
caregiver coping strategy. 16. 46. 89. 188. guided imagery. 239-40
" lt>0 avoided memories, reliving, 240
r'K arum cancer vs*Y Gynecological cancer' interrelated phases. 239
pharmacological treatment, 238
P present time imagery . 239
identity reconstruction, 239
Palliative care, 44. 49 rescheduling social reinforcement.
female caregivers, 49 238-39
Paranoid ideation. 71, 95. 97, 113. 115, 176. hypnosis. 238
196, 198 psv chodvnamic re interpsvchic con¬
Parent caregiv er vsee Caregiv er of adult flicts, 238
child) therapy, short-term psychotherapy.
Parent-child relationship 235-38
Contact Retw een Generations Batten, assistive understanding. 236-37
79-80 crisis therapy. 237
group solidarity. 79 losses, confronting previous. 237
social cohesion. "9 procedures, 235-36
variables assessed. "9-80 re-grief, treatment phases. 236
Parent of adult patient vsrr Adult child care¬ trauma desensitization, 237-38
giver) Patient attributes sre Personal resources
Parkinson's disease Patient autonomy s<v also Doctor-cancer
caregiver stress, 70, 88 patient relationship
informal social support, 80 caregiver dependency, x. 249-65
Paternalism, \. 849-56 caregiver role in medical decisions, x, 38,
Pathological grief. 190. 858-48 s.-y .;8sc 250
Bereavement therapy) ensuring, x, 249-50
categories of gnev ers, 235 experimental treatments, x. 249
theories of, 282-33 medical coercion. 250-51
absent, delayed. excessive, prolonged patient independency . 249-65
grief. 234-35 phvsician authority, disregard. 250-51
attachment, 833-35 relationship models. 251-56
Row lb\'s thesis on bonds, 833 consumerism. 251, 253-55
causal sequences. 233-34 mutuality, 251,255-56
Subject Index 309
paternalism, 251-53 Physical health

summary, 256-57 cancer treatment, 34, 43, 87, 218-20
right to halt treatment, 249 physical symptoms, 34
withholding care, 249, 263-64 psychological symptoms, 34
Patient autonomy and caregiver involve¬ Physical Self-Maintenance Scale (PSMS), 81
ment, 257-62 Physician authority
confidentiality, 257-59 caregiver, relationship with, 253, 255-57
caregiver’s rights, 260-61 confidentiality, 257-59
medical information, right to, 259-62 legal reviews, 258-59
caregiver’s rights 260, 261 medical information, right to know,
doctor’s role, 261-62 259-61
patient’s rights, 259-62 disclosure of, 261-62
recurrence of illness, 261-62 incompetent patient, 262-64
withholding information, 261-62 consumerism, x, 251, 253-55
patient’s rights, 259-60 mutuality, x, 251, 255-56
withholding care, 249, 263-64 paternalism, x, 251-53
Patient coping patient autonomy, 249-65
caregiver coping relationship, 46-48 summary, 256-57
Patient dependency, 249-65 treatment, choice of protocol, 252-54
Patient distress withholding treatment, 252, 249, 261-64
adjustment, 45, 110, 120, 131-32, 139 Planning, 76-78, 145, 147, 152, 153, 157, 158
adjustment and familial spillover, 47-48 Positive framing
caregiver coping relationship, 46-48 caregiver coping strategy, 16
Patient gender (see Gender) Positive reinforcement, 76-78, 145, 147, 152,
Patient’s health 153, 157, 158
impact on caregiver’s stress, 12-14 (see also Positive Symptom Distress Index, 67 (see abo
Caregiver burden; Caregiver Brief Symptom Inventory)
stress) Positive Symptom Total, 67 (see abo Brief
Patient’s pain Symptom Inventory)
caregiver stress, 14 Post-bereavement (see abo Bereavement
Patient’s rights process)
halting treatment, 249 ■ mourning phases
Personal background (see Personal resources) anger, 190, 228 (see abo Anger)
Personal decisions (see Patient’s rights) depression, 190, 228 (see abo Depres¬
Personal environment sion)
appraisal variables, 9, 10, 22, 37-39 recovery, 190, 228 (see abo Recovery)
Personal resources, ix, 11, 15-21, 38- 40, 43, reorganization, 190, 228 (see abo Reor¬
48-51, 88-89, 109-10, 120, 133, ganization)
138, 190-91 shock, 190, 228 (see abo Shock)
age, 16, 18, 50 (see also Age) Post-discharge from hospital (see Caregiver
education, 16, 18-19,50-51 (see abo Edu¬ distress; Support services)
cation) Post-treatment (see Support services)
gender, 16-18,49 (see abo Gender) Post-treatment management, 213-42
mastery, 16, 19 (see abo Mastery) Practical problems (see Psychoeducational
socioeconomic status, 51 intervention)
Pessimism vs. optimism, 16, 46, 89, 138, 160 Preventive bereavement program (see
Phobic anxiety, 71, 95, 97, 113, 115, 176, 196, Bereavement therapy)
198, 233-35 Problem-focused (PF) coping
Physical Classification Scale (PC), 81 caregiver daughter strategies, 16, 42
seeking help, 11 treatment dependency, stressors, 34

strategies, 9, 16, 37, 39, 46, 74, 126, 138, well-being, coping strategies
160, 229 burden, perceptions of, 14-15, 22,
vs. emotion-focused strategies, 16, 37, 39, 42-43, 45, 110, 120, 131-32, 139
46, 126, 160, 229 care receiver, 31-37
Problem-solving intervention model, 223-28 caregiver role, 7-9, 21, 39-44,
(see also Caregiver intervention type of care receiver, 12—14
model) depression, 12, 16-19, 20, 22-23, 32-35
COPE, ix, x, 74-75, 144, 223, 271 social support, 6-7, 19-21, 52-54, 89,
overview of elements, 223-24 110, 118, 120, 124-26, 131-33, 139,
support group model, 224-28 (see also 140,167
Support group intervention model) breast cancer, 31-32, 89
phases of session support, 224-27 stress appraisal strategies, 9-12, 15,
Problem-solving methods/techniques, 9, 16, 37-39,137-41
37, 39, 46, 74, 126, 138, 160, 229 coping process, 16, 40, 137-61
Profile of Mood States, 48 informal vs. formal resources, 19-21,
Prolonged burden (see Caregiver burden) 40, 140
Prolonged stress (see Caregiver stress) personal resources, ix, 11, 15-21,38-
Prostate cancer, 128, 221, 253 40, 43, 48-51, 88-89, 109-10, 120,
terminal phase recurrence, 221-22, 253 133, 138, 190-91
Psychiatric disorders (see Anxiety; Depres¬ variables, 9-10, 21-23, 40
sion; Cognitive impairment) Psychosocial Adjustment (PSA) (see also
Psychoanalytic theories (see also Pathological Response-oriented measurements)
grief) breast cancer, 94
attachment theories of pathological grief, functioning evaluation, 73, 80-81, 94
233-42 (see also Pathological grief) overview, 73, 80-81
absent, delayed, excessive, prolonged response-oriented measurement, 73, 80
grief, 234-35 Psychosocial Adjustment of Illness Scale
Bowlby’s thesis on bonds, 233 (PAIS), 80-81
causal sequences, 233-34 cancer patients applicability, 80
separation anxiety, 233-35 overview, 80-81
substitute attachments, 234 sexual relationships exclusion, 81
Freud’s libidinal energy models Psychosocial adjustment to physical illness
hypercathexis, 232 measures
working through, 232, 238 Instrumental Activities of Daily Living,
Hamilton’s suspended state of mourn¬ 81-83
ing, 237 Psychosocial Adjustment (PSA), 73, 79-80
Psychodynamic psychotherapy Psychosocial Adjustment of Illness Scale
Psychoeducational intervention (PAIS), 80-81
psychosocial program for caregiver dis¬ Psychoticism, 71, 95, 97, 113, 115, 176, 196,
tress, 213-42 198
Psychological distress
body image, treatment symptoms Q,
chemotherapy, 34, 87, 88, 94, 128
drugs and neurotoxicity, 34, 87, 88 Quality of life
radiotherapy, 34, 87, 88, 94, 128 cancer as death sentence, perception, 32
child, illness, 165 care, withholding of, 249, 263-64
post-treatment surveillance recurrence of cancer, viii, 87, 108
loss of security and oversight, 34-35 well-being, 32, 263-64
Subject Index 311
R Self-help group (see Support group; Bereave¬

ment therapy)
Radiotherapy Self-image
stress, implicit, 33 terminal phase, 35, 221-22
Realistic goals, 227 (see also Goals) treatment implications for body image,
Reappraisal in stress and coping model, 9, 33-34, 87, 88
36 Self-trust
Recurrence death, fear of, 35
fear of implications, viii, 35, 43, 87 Sense of burden, 6, 15, 17-18, 38, 44, 48, 49,
psychological responses, 35, 87, 139 132, 165-66, 226-27, 250
Re-grief therapy, 236 Sense of isolation, 6, 15, 17-18, 38, 44, 48,
stages, 236 49, 132, 165-66, 226-27, 250
Relative (see Caregiver, familial) Sense of mastery (see Support group;
Relaxation technique, Bereavement therapy)
Religion, 76-78, 145, 147, 152, 153, 157, 158 Separation anxiety, 233-35 (see also Patho¬
Religious, cultural practices, 230 logical grief)
Reorganization recovery, 190, 228 Separation from the dying patient, 228, 230
Rescheduling of social reinforcement, 238 Setting goals, 227 (see also Goals)
Resilience (see Personal resources) Sexual needs, 34, 39, 81, 88, 90, 109-110
Response-oriented measurement (see also Sexual relationship, 34, 39, 81, 88, 90,
Brief Symptom Inventory) 109-110
Brief Symptom Inventory (BSI), ix, 66-73, PAIS exclusion, 81
93, 112, 129, 144, 170, 194-96, 270 treatment phase, 34
indices, 67 Shame, 87, 108, 218, 226, 241 (see also Guilt;
Psychosocial Adjustment (PSA), 73 Cancer, breast; Cancer, gynecologi¬
study analyses cal)
Israeli BSI norms, 68-73 Sharing feelings (see Support group)
Restraint, 76-78, 145, 147, 152, 153, 157, 158 Short-term distress, 45, 110, 120, 131-32, 139
Right not to know, 249, 257-61 Short-term psychotherapy, 235-38
Right to stop treatment, 249 Social class (see Personal resources)
Role strain, 6, 15, 17-18, 38, 44, 48, 49, 132, Social interaction
165-66, 226-27, 250 Contact Between Generation Battery,
79-80
S variables assessed, 79
Social security assistance (see Personal
Sandwich generation, 42 (see also Adult child resources)
caregiver stress) Social services, 19, 20-21, 31-32, 51-52, 89
Schizophrenic patients Social support, viii, 6-7, 19-21, 31, 39,
caregiver well-being, 17, 22 52-54, 89, 110, 118, 120, 124-26,
Screening program, 253-55 131-33, 139, 140, 167, 202-5 (see
Second medical opinion, 36 also Coping-With-Stress)
Self-awareness (see Bereavement therapy) cancer
Self-care (see Bereavement therapy) breast, 31-32, 89
Self-confidence (see Bereavement therapy) caregivers, 6-7, 19-21, 52-54, 89, 110,
Self-Coping and Perceived Other-Coping 118, 120, 124-26, 131-33, 139, 140,
Questionnaires, 143-44 167
Self-esteem (see Bereavement therapy, Can¬ definitions, 6-7, 19, 51-52
cer, phases of) distress predictors, 20
family support, 51-52 female, 17-18, 49

formal social support personal resources, ix, 11, 15-21, 38- 40,
community services, 19, 20-21, 31-32, 43, 48-51, 88-89, 109-10, 120, 133,
51-52, 89 138, 190-91
informal social support role relationship, changing, 9, 15, 17-18,
family, friends, relatives, 19, 20, 31-32, 38, 44, 48, 49, 132, 165-66, 226-27,
39,51-52,89 250
spouse, social support, 6-7, 19-21, 52-54, role strain, 6, 15, 17-18, 38, 44, 48, 49,
89, 110, 118, 120, 124-26, 131-33, 132, 165-66, 226-27, 250
139, 140, 167 social support, viii, 3, 6-7, 9, 19-21, 31, 39,
Social support measurement (see also Mea¬ 40, 52-54, 89, 110, 118, 120, 124-26,
surement instruments) 131-33, 137, 139, 140, 167, 202-5
Contact Between Generation Battery, socioeconomic status, 51, 202
79-80 stress and well-being evaluation, 15
Multidimensional Scale of Perceived Spouse caregiver bereavement study,
Social Support, 78-79 191-205 (see also Bereavement
overview, 77-78 processes)
Socioeconomic status (see Personal resources) hypotheses and research aims, 192-93
Somatization, 71, 95, 97, 113, 115, 174, 176, measurement instruments
180, 196, 198 Brief Symptom Inventory (BSI), ix,
Spousal distress (see Spouse caregiver) 66-73, 93, 112, 129, 144, 170,
Spousal support, viii, 3, 6-7, 9, 19-21, 31, 39, 194-96, 270
40, 52-54, 89, 110, 118, 120, ENRICH, 196-97
124-26, 131-33, 137, 139, 140, 167, Psychosocial Adjustment to Physical Ill¬
202-5 ness Scale (PAIS), 196
Spouse caregiver Texas Revised Inventory of Grief
age, 18, 42 (TRIG) Scale, 196
bereavement process, 189-205 (See also methodology, 193-97
Bereavement process) overview of purpose, 192-93
burden, implications for, 14-15, 22, overview of results, 197-201
42-43, 48-51 comparisons with community sample,
care receiver distress, 46-51 testing hypothesis, 197-201
cancer summary, 201-5
breast, emotional support, 32, 38-39, Spouse illness (see Type of illness; Bereave¬
103-5, 141 ment process; Caregivers)
distress by age, 50 Stage of the illness (see Cancer, phases of)
distress by gender, 44, 49-50 Stress and coping
communication with dying spouse, 191 Lazaraus-Folkman model, viii, 9-11, 22,
companion, loss of, 202-5 137-41
death, process of, 191-92 appraisals, 9, 137-41
accident, 192 coping modes, 9, 137-41
home death, terminal illness, 192, environmental variables, 9
221-22 personal variables, 9, 22
hospice death, 192, 221-22 Stress measurement (see also Measurement
illness, 191, 221-22 instruments)
nursing home death, 192, 221-22 cancer caregivers
stages of, 190 Brief Symptom Inventory (BSI), ix,
dependency for intimate care, 9 66-73, 93, 112, 129, 144, 170,
depression, 12, 16-19, 20, 22-23 194-96, 270
Subject Index 313
Caregiver Level of Burden Scale, emotion-focused, 11, 16, 46, 74, 126,
66-73, 127 138, 141, 160, 229
Instrumental Activities of Daily Living problem-focused, 9, 11, 16, 37, 39,
(IADL), 127 46, 74, 126, 138, 160, 229
Psychosocial Adjustment (PSA), 73 cognitive impairment, viii, 5, 6, 12-14, 22
definitions of operations formats, 65 dependency, 5, 6
interactional theories, 65 disruptive behaviors, 6, 216
cancer caregivers, 73-77 income, decline, 6, 38-39, 51, 202
overview of stress theory formats, 65-66 income, loss of caregiver employment,
response-oriented theories, 65-73 38-39, 51, 202
Brief Symptom Inventory (BSI) ix, mentally ill, 6
66-73, 93, 112, 129, 144, 170, disruptive behaviors, 6
194-96, 270 (see also Brief Symptom task function, 6
Inventory) role strain, 6, 15, 17-18, 38, 44, 48, 49,
cancer caregivers, 65-73, 129-33 132, 165-66, 226-27, 250
overview, 66 Studies {see also Specific study)
stimulus-oriented theories, 65 adult child caregiver distress, 168-84
Stress model breast cancer spousal distress, 87-105
Biegel’s adjusted ABCX model, viii, BSI norms, Israeli, 68-73
11-15, 22, 269-70 coping, Israeli, 75-77
cognitive model (Lazarus-Folkman), viii, elderly cancer spousal distress, 126-33
9-11, 22, 137-41, 159 gynecological cancer spousal distress,
Stress situation 111-21
social support, viii, 6-7, 19-21, 31, 39, spouse caregiver and bereavement
52-54, 89, 110, 118, 120, 124-26, process, 189-205
131-33, 139, 140, 167, 202-5 Sudden death, 191-92
Stressful, viii, 3, 6-7, 9, 19-21, 31, 39, 40, Suicide, 35
52-54, 89, 110, 118, 120, 124-26, Support group, 224-27 (see also Caregiver
131-33, 137, 139, 140, 167, 202-5 intervention)
(see also Caregiver stressors) overview of session breakdown, 224-28
Stressors {see also Caregiver stressors) emotional responses to diagnosis,
acute stress definition, 10-11 225-26
AIDS, 5, 6 getting acquainted, 224
side effects of treatment, 6 initial reaction of spouse’s surgery, 225
caregivers, generalized, viii, 6, 12-14 medical information, 225
cognitive disruption, 6, 12-14, 15, 22 role strain, 15, 17-18, 38, 44, 48, 49,
dependency increase, 5, 6, 10, 12-14 132, 165-66, 226-27, 250
family alterations, 6, 15, 17-18, 38, 44, setting goals, 227
48, 49, 132, 165-66, 226-27, 250 summing up, dispersing, 228
income decline, 6, 38-39, 51 Support program
independence decrease, 6, 10 spousal support, viii, 3, 6-7, 9, 19-21, 31,
loss of employment, 38-39, 51 39, 40, 52-54, 89, 110, 118, 120,
loss of previous relationship, 6 124-26, 131-33, 137, 139, 140, 167,
severity of illness, 12 202-5
severity of injury, 13 Suppression, 76-78, 145, 147, 152, 153, 157,
threat to life of loved one, 6, 10, 33 158
chronic stress definition, 10-11, 33-35 Surgery
coping goals, 11 acute stressors, 33-35, 87, 88, 137
Survival rate. 45, 139 Therapist, role, 224-28

Suspended state of mourning, 237 Therapy and therapist, 231-42
Svmptom Checklist-90- Re vised (SCL-90-R) cognitive-behavioral therapy, 238-40
Symptoms, treatment {see also Cancer, group intervention, 240-42
phases of) pathological grief, 190, 231-35
physical, 34 psvchotherapy process, 235-38
psychological, 34 Therapy, brief, 235-38 ^
System approach {see Family system approach' Threat
chronic stress definition, 6, 10, 32-35
T medical treatments, 33-35
post-treatment loss of security, 34-35
Terminal illness Trauma desensitization, 237-38
caregiver appraisal and coping process, Traumatic brain injury
" 40,221-22 caregiver, roles of, 17-18, 22
caregivers Treatment, cancer
AIDS, 5, 6, 40 intervention techniques, 34-35, 225
cancer, 5, 40 physical symptoms. 33-34
caregiving process phases, 40 types of and caregiver distress, 45, 225
caregiver, becoming. 40 Treatment schedule
death, resolving, 40 stress, implicit, 33-35
midwife death. 40 follow-up phase, recurrence threat, 35,
taking charge, 40 43, 87, 94, 128, 218-20
model of strain, 39—40 post-treatment loss of security, 34-35
caregiver variables, 40, 44 realization of illness, initiation of treat¬
palliative care, 44, 49 ment, 34
familial distress, 44. 49 terminal phase, confrontation of death,
patient-doctor-caregiver relationship, 35,221-22
249-65 Type A personality and COPE scale, 74
stressor relationship and distress, 40 Type of diagnosis, 32, 33
palliative care, 44, 49
stressors, 22-23. 44 U
withholding care 249, 262-64
Terminal phase (iff also Patient-doctor-care¬ Unfinished business resolution, 239-240
giver relationship) Unresolved grief, 232-42 {see also Pathologi¬
caregiver distress. 221-22 cal grief)
death, fear of. 35 Uterine cancer {see Gynecological cancer)
pain. 35
patient-doctor-caregiver relationship. V
249-65
physical responses, 35 Validation (see Social support)
psychological responses, 35, 139 Ventilation, 76-78. 145, 147, 152, 153,
stressors, 22-23, 35, 44 157-59
palliative care, 44, 49 Vomiting, 88, 124, 137
withholding care, 249. 262-64 {see also
Patient-doctor-caregiver relation¬ W
ship)
Termination, 249, 261-63 Ways of coping questionnaire, 74
Texas Revised Inventors of Grief (TRIG), Weak, 88, 124, 137
196 Weight changes, 88. 124. 137
Subject Index 315
Weight loss, 88, 124 137 Wishfulness

Well-being (see Quality of life) coping strategy, 16
Widow-to-widow program, 240-42 Withholding care, 232, 249, 261-264
Widowers (see also Bereavement process) incompetent patient, 263-64
bereavement process, 197-99 patient’s rights, 261-62
communication with dying spouse, 191, 200 terminal illness information, , 35, 221-22,
distress and social support, 202-5 261-62
psychological/psychosocial loss of spouse, Women (see also Daughters)
191-92, 202-5 daughter caregivers, 15, 16, 42
spousal social support, viii, 3, 6-7, 9, Working through, 232, 238 (see also
19-21, 31, 39, 40, 52-54, 89, 110, Pathological grief)
118, 120, 124-26, 131-33, 137, 139, Worry
140, 167, 202-5 predictor of daughter mental health, 17,
Widows (see also Bereavement process) 42
bereavement process, 197-99
communication with dying spouse, 191, 200 Y
distress and social support, 202-5
psychological/psychosocial loss of spouse, Youth
191-92, 202-5 caregiver stress, 18, 42
spousal social support, viii, 3, 6-7, 9,
19-21, 31, 39, 40, 52-54, 89, 110,
118, 120, 124-26, 131-33, 137, 139,
140, 167, 202-5
.
'
■ ■ - '
• LIBRARY
Amazing Help.
http://nihlibrary.nih.gov
10 Center Drive
Bethesda, MD 20892-1150
301-496-1080
3 1 496 00957 730E
Cancer and the Family C

Distress and Coping
This book is the product of the authors’ research ar
in the field of psycho-oncology, stress, and coping 1
twenty years. It fills a gap that exists in the discussi'
tress felt by both cancer researchers and psycho
vital area of predicting, acknowledging, and allevia
caregivers of cancer patients, and it focuses on the
cer patients in various phases of the illness. The dis
patient caregivers is divided into three aspects: tl
research (Part 2), and practical (Part 3) issues. Th«
areas can be useful to clinicians, researchers, me
social workers, and nurses by familiarizing them w
stresses experienced by cancer patients and their (
coping methods that have proven most effective,
theoretical background on the structure and progn
giver role and how caregivers cope with the illne
recent literature. Part Two presents empirical resc
psychological distress carried out by the authors u ui ii i i uuu.
Part Three examines two important issues. The first is intervention for
reducing caregiver distress, and the second issue is the ethical ques¬
tion of caregiver involvement in the patient’s medical decisions. The
book is timely, as it is felt that the issue at hand will have mounting
importance and relevance to our society as it experiences growing
longevity and concomitant challenges in cancer caregiving.

CHARLES C THOMAS - PUBLISHER, LTD. - Springfield - Illinois - U.S.A. ". - Maffy '

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CHARLES C THOMAS • PUBLISHER, LTD. • Springfield • Illinois • U.S.A.

HLUa 10, 10 CENTER DR

Published, and Distributed Throughout the World by

CHARLES C THOMAS • PUBLISHER, LTD.

This book is protected by copyright. No

©2002 by CHARLES C THOMAS • PUBLISHER, LTD.

ISBN 0-398-07290-6 (hard)

Library of Congress Catalog Card Number: 2002020634

With THOMAS BOOKS careful attention is given to all details of manufacturing

Printed in the United States of America

Library of Congress Cataloging-in-Publication Data

RC262 ,G53 2002

M edical progress in increasing longevity has brought with it a large

An explanation for this may rely on the distinctive characterization of

tress, adjustment to illness and medical variables, and caregiver adjust¬

PART ONE: THEORETICAL ISSUES: CAREGIVING

CHAPTER 1. CAREGIVERS OF ILL PERSONS .5

CHAPTER 2. THE CAREGIVER OF THE CANCER PATIENT .. .31

Social and Family Support.51

PART TWO: EMPIRICAL RESEARCH:

CHAPTER 3. MEASUREMENT ISSUES.65

CHAPTER 4. PRIMARY CAREGIVER DISTRESS:

CHAPTER 5. PRIMARY CAREGIVER COPING WITH

CHAPTER 6. SECONDARY CAREGIVER DISTRESS:

CHAPTER 7. THE SPOUSE CAREGIVER AND THE

PART THREE: PRACTICAL ISSUES

CHAPTER 8. PSYCHOSOCIAL INTERVENTION FOR

Intervention Program for the Bereaved Caregiver:

CHAPTER 9. DOCTOR-CANCER PATIENT-FAMILY

CHAPTER 10. SUMMARY AND CONCLUSIONS.269

Figure 7.2. Path Analyses of TRIG-present and PAIS.203

Table 4.7. Correlations Between Demographic Variables of

Table 5.4. Pearson Correlations Between Spouses’ and Patients’

Table 6.10. Correlations Between Parents’ and Patients’ Demographic

CAREGIVERS OF ILL PERSONS

O ver a thousand studies have been published to date on the care¬

The caregiver of a member of the family with a chronic or terminal

DIFFERENCES BETWEEN CAREGIVING AND

Do the terms caregiving and social support refer to different or similar

ners” (p. 18). The importance of clarifying differences in definitions of

STRUCTURAL ASPECTS IN THE CAREGIVER ROLE: ROLE

As research on the caregiver role for Alzheimer’s patients shows

Consequently, the parent-child relationship changes. This shift

PROCESS ASPECTS IN THE CAREGIVER ROLE:

The Appraisal Model

The cognitive model developed by Lazarus and Folkman (1984)

FIGURE 1.1. The Appraisal Model.

Note: Based on Lazarus (1999), and Lazarus and Folkman (1984).

physiological outcomes, respectively. In addition, two main groups of

In the context of chronic or terminal illness, caregivers develop a

The ABCX Model of Coping with Stress

Analyzing caregiver distress on the basis of Lazarus and Folkman’s

dant); C. Perceptions of the caregiving situation, including burden, guilt,

Figure 1.2. The ABCX Model Applied to Caregiving.

X. Mental/Phvsicai Health Crises t

This model bears a strong resemblance to the coping-with-stress

CAREGIVER COPING WITH ILLNESS:

Research on the patient’s health as a caregiver stressor has focused

1994), while in another (Semiyen et al., 1998), factors associated with

One aspect of the perception of the caregiver situation, according to

giver’s inner resources on the approach to burden (Gallagher-Thomp-

Most of the research on the correlation between appraisals and the