DOCTYPE = ARTICLE
Psychosocial Adjustment of Adolescent Siblings
of Hematopoietic Stem Cell Transplant Patients
Wendy Packman, JD, PhD
Kimberly Gong, MPH
Kelly VanZutphen, PhD
Tani Shaffer, MS
Mary Crittenden, PhD
Hematopoietic stem cell transplantation (HSCT) is
a widely practiced therapy for many life-threatening
childhood disorders. The authors investigated the psy-
chosocial effects of HSCT on siblings of pediatric HSCT
patients (n = 44; 21 donors, 23 nondonors, ages 6 to
18 years). Donor siblings reported significantly more
anxiety and lower self-esteem than did nondonors.
Nondonors showed significantly more school problems.
Approximately one third of all siblings reported mod-
erate to severe posttraumatic stress. The study drew on
the developmental theory of Erik Erikson and the psy-
chosocial model of posttraumatic stress. As part of the
study, the authors used the Measures of Psychosocial
Development (MPD), a self-report measure based on
Eriksonian constructs. The MPD was used to assess
the psychosocial adjustment of 12 siblings who were
adolescents (≥ 13 years) at the time the study was con-
ducted. In this article, findings are presented from the
MPD as well as salient findings from the larger study.
Key words: siblings, adolescents, Erikson, hematopoi-
etic stem cell transplants, bone marrow transplants,
psychosocial adjustment
H ematopoietic stem cell transplantation (HSCT)
has emerged as the treatment of choice for many
malignancies and hematologic and genetic disorders of
childhood. Each year, about 75% of the children who
have HSCTs receive marrow from a brother or sister.
Some attention has been paid to the psychological
© 2004 by Association of Pediatric Oncology Nurses
DOI: 10.1177/1043454203262698
Journal of Pediatric Oncology Nursing, Vol 21, No 4 (July-August), 2004: p 233-248
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effects of transplantation on HSCT patients, but min-
imal attention has been given to psychosocial seque-
lae in siblings. The healthy siblings of children
undergoing HSCT live the intense stress of the illness.
The impact on the family unit is intensified because two
family members, usually children, are subjected to
invasive medical procedures. Furthermore, because the
patient must be hospitalized in isolation for a pro-
longed period until hematopoietic recovery, siblings are
often separated from both parents and patient.
Purpose
The purpose of this study was to investigate the
psychosocial effects of HSCT procedures on donor
and nondonor siblings (Packman, Crittenden, Rieger
Fischer, et al., 1997; Packman, Crittenden, Schaeffer,
et al., 1997). The participants in the total study included
44 siblings (21 donors, 23 nondonors, ages 6 to 18
years). Using a multidimensional, multimethod
approach, we assessed each sibling’s current psy-
chosocial adjustment using objective measures com-
pleted by the child, one parent, and one teacher. Children
Wendy Packman, JD, PhD, is an assistant professor of clinical psychol-
ogy, Kimberly Gong, MPH, is a research assistant and project coordinator,
Kelly VanZutphen, PhD, is a research assistant, and Tani Shaffer, MS, is
a research assistant at the Pacific Graduate School of Psychology, Palo
Alto, California. Mary Crittenden, PhD, is a clinical professor of pedi-
atrics in the Division of Behavioral and Developmental Pediatrics,
Department of Pediatrics, University of California, San Francisco. Address
for correspondence: Wendy Packman, JD, PhD, Pacific Graduate School
of Psychology, 935 E. Meadow Drive, Palo Alto, CA 94303.
233
Packman et al.
also completed projective drawings. In addition, we con-
ducted interviews with siblings and parents to give
respondents the opportunity to express feelings and
thoughts about the HSCT experience. On self-report
measures, donor siblings reported significantly more
anxiety and lower self-esteem than nondonor siblings
did. On teacher-rated scales, donors showed significantly
more adaptive skills in school than did nondonors, and
nondonors showed significantly more school prob-
lems. Finally, approximately one third of the donors and
nondonors reported a moderate to severe level of post-
traumatic stress (Packman, Crittenden, Rieger Fischer,
et al., 1997; Packman, Crittenden, Schaeffer, et al.,
1997).
As part of our study, we used the Measures of Psy-
chosocial Development (MPD) (Hawley, 1988), a self-
report measure based on Eriksonian constructs, to
assess the psychosocial adjustment of siblings who
were adolescents at the time of the study (n = 12). In
this article, we report the findings of psychosocial
adjustment of 12 adolescent siblings of surviving pedi-
atric HSCT patients.
Review of the Literature
In the psychosocial literature that has expressed
concern for the psychological impact of HSCT on sib-
lings, investigators have noted that siblings in general
tend to suffer from emotional problems as a result of
the patient’s illness (Wiley, Lindamood, & Pfeffer-
baum-Levine, 1984). The donor selection procedure
establishes a new relationship between the siblings
and affects the entire family system (Wiley et al., 1984).
At the time of tissue typing, siblings may compete for
the role of donor, causing nondonors to feel excluded.
Nondonor siblings experience ambivalent feelings of
both disappointment and relief and may express guilt
about these feelings of relief (Freund & Siegel, 1986).
Potentially serious psychological reactions may
result from the loss and replacement of bone marrow.
In the view of Pinegger-O’Connor and Bender-Gotze
(1980), sibling donors experience the donation proce-
dure as “an act of robbery” and a “threat to body
integrity.” The school-aged child, who is in the process
of developing a self-concept, is particularly vulnerable
to questions of altered identity (Wiley et al., 1984). Pot-
Mees and Zeitlin (1987) found that one third of the sib-
lings were at risk to develop behavioral problems during
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the treatment period. New behavior problems occurred
far more frequently among sibling donors than among
the other siblings. Other researchers have noted that sib-
lings who have been directly involved in the care of an
ill child, such as bone marrow donors, appear to be emo-
tionally affected by the experience (Stuber, 1996;
Wolcott, Wellisch, Fawzy, & Landsverk, 1986).
The interpretation of the HSCT process is influ-
enced by age (Stuber, 1996). Adolescents have the
need to establish an identity unique to themselves and
apart from the earlier identifications acquired during the
formative years (Muuss, 1988). The personal and social
changes of adolescence are often conceptualized as
developmental tasks, implying that such changes involve
challenges that when adequately resolved, lead to good
psychosocial functioning in early adulthood (Erikson,
1968). The developmental tasks of adolescence include,
among others, developing a sense of self-identity and
establishing autonomy from parents (Erikson, 1968).
The HSCT process may affect any of these develop-
mental processes and may be particularly salient for
bone marrow donors who undergo the invasive dona-
tion procedure.
Theoretical and Conceptual Framework
We used a conceptual framework that drew on Erik-
sonian developmental theory and the psychosocial
model of posttraumatic stress (Erikson, 1968; Green,
Wilson, & Lindy, 1985). Erikson viewed development
as a process of transformation through eight age-related
psychosocial stages characterized by specific oppor-
tunities, demands, and vulnerabilities (see Figure 1).
Adverse conditions may therefore affect development
in stage-specific ways. Disruptions affect not only the
stage during which the event occurred but also the res-
olution of tasks in subsequent stages (Erikson, 1959,
1968). The process of human development involves an
interplay between genetically based aspects of per-
sonality and the influences of family and culture that
shape the personality (Muuss, 1988). Erikson’s approach
is grounded in developmental psychopathology, a per-
spective that examines the evolu
tion of psychological disturbances in the context of
development (Matsen, 1992). Erikson provides a the-
oretical framework for understanding why an extraor-
dinary stressor such as an HSCT can have a particular
effect on a child’s later life.
Journal of Pediatric Oncology Nursing 21(4); 2004

Figure 1. The Ages of Man
SOURCE: Erikson, E. H. (1963). Childhood and society. New York:
Norton. Reproduced with permission.
In Eriksonian theory, each psychosocial stage is
characterized by a conflict that has two opposing pos-
sible outcomes. If the conflict is resolved in a satisfactory
manner, the positive quality becomes part of the ego and
healthy development is enhanced. However, if the con-
flict is resolved unsatisfactorily, the negative quality is
incorporated into the personality structure, interferes
with further development, and may manifest itself in
psychopathology (Muuss, 1988). According to Erikson,
the crisis of trust versus mistrust characterizes infancy
and the infant’s need for a predictable and relatively con-
sistent form of interaction with others. In the play age,
children learn varying degrees of self-control through
language acquisition, motor coordination, and more
sophisticated interpersonal relationships. The issue is
between becoming an autonomous, creative individual
and an inhibited individual filled with self-doubt (Muuss,
1988). By the age of 5 years, the child builds on his or
her autonomy to engage in more self-initiated activi-
ties that build a sense of self-esteem. The psychosocial
conflict is the development of a sense of initiative ver-
sus a sense of guilt. During the school years, develop-
ing cognitive capacities enables the child to broaden the
basis of personal and social competence through
advanced learning. The task is the development of a
sense of industry versus the emergence of feelings of
inferiority. With adolescence, there is the need to estab-
lish an identity unique to oneself and apart from the ear-
lier identifications acquired during the formative years
(Erikson, 1959). The psychosocial conflict is a sense
of identity versus identity confusion.
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Psychosocial Adjustment of Adolescent Siblings
Building on Eriksonian theory, Green et al. (1985)
suggested a psychosocial model for understanding
posttraumatic reactions, with a focus on the interaction
of traumatic stressors, individual characteristics, and the
social environment in which the trauma is experienced
and in which the patient recovers. The interactional
model set forth by Green et al. is widely accepted in
the field and is considered a general model applicable
to all traumatic experiences (Peterson, Prout, &
Schwartz, 1991). The current study drew on the theo-
ries of Erikson (1959, 1968) and Green et al. (1985) and
used a psychosocial-developmental framework to con-
ceptualize the effects of the stressor of HSCT on sib-
ling donors and nondonors. The literature on traumatic
stress in children presents a wide range of stressors,
including sniper attacks, diverse disasters, and devel-
opmental transitions, as precipitating events of a post-
traumatic stress response in children (Trad & Greenblatt,
1990). Studies on children’s responses to stressors such
as medical and surgical procedures have suggested
that involvement in HSCT could generate a traumatic
stress response in siblings (Hobbie et al., 2000; Meeske,
Ruccione, Globe, & Stuber, 2001; Pot-Mees, 1989;
Stuber, Nader, Yasuda, Pynoos, & Cohen, 1991).
Accordingly, our psychosocial-developmental model
considered the factors that may influence posttrau-
matic stress responses. These factors include charac-
teristics of the stressor, individual characteristics, and
social environmental factors. The model also includes
posttraumatic cognitive processing. This study did not
examine the way in which cognitive mechanisms medi-
ate or process stressful events.
As depicted in Figure 2, within this psychosocial-
developmental framework, the primary sequence is the
occurrence of a stressor or traumatic event, specifi-
cally, the HSCT experience. The stressor leads to cog-
nitive processing, which in turn leads to a final positive
or negative outcome, which constitutes the sibling’s psy-
chosocial adjustment. A sibling’s psychosocial adjust-
ment depends on the interaction of characteristics of the
stressor, individual sibling characteristics, and social
environmental factors. When a sibling has a positive out-
come, Eriksonian developmental crises may be a source
of growth. In contrast, when a sibling has a negative out-
come, Eriksonian developmental crises may be a source
of maladjustment. The model seeks to account for the
fact that certain persons exposed to trauma experience
maladjustment whereas others experience growth or
restabilization (Green et al., 1985).
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Packman et al.
Figure 2. Psychosocial Developmental Framework for Understanding Posttraumatic Responses
NOTE: HSCT = hematopoietic stem cell transplantation.
Method
Design/Power Analysis
The study employed a cross-sectional and retro-
spective design using both quantitative and qualitative
methodologies. Information on the siblings’ current
psychosocial functioning was collected through stan-
dardized parent and teacher behavior rating scales,
child self-report measures and drawings, a background
questionnaire, and parent and child interviews. The
first author reviewed all relevant literature; however, no
previous research existed upon which to base an esti-
mate of statistical power. Moreover, the low number of
available participants made it impracticable to con-
duct a full-scale pilot study and use those results to esti-
mate an effect size. In this study, the alpha level was
set at .05 for a two-tailed test. Trends toward signifi-
cance at the .10 level were also reported.
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Study Goals
The goals of this study were the following:
1. to assess the current psychosocial adjustment of
donor and nondonor siblings,
2. to compare the current psychosocial adjustment
of donor and nondonor siblings,
3. to describe how involvement in the HSCT expe-
rience affects development as conceptualized by
Erikson and the psychosocial model of post-
traumatic stress disorder (PTSD), and
4. to formulate recommendations for the care of
siblings of children who will be undergoing
HSCT in the future.
Procedure
Letters announcing the study were sent to potential
participants describing the study’s purpose and proce-
dures. A refusal postcard was included with the letter.
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Approximately 2 to 3 weeks later, those who had not
returned the refusal card were telephoned, and a time
and place to meet was scheduled. Participants had the
option of arranging their interviews to coincide with one
of their regular, posttreatment appointments at the Uni-
versity of California, San Francisco (UCSF), or being
interviewed in their own homes. Six of the 44 partici-
pants were interviewed at UCSF (14%), and 86% were
interviewed in their own homes. At the time of partic-
ipation, the study was again explained and questions
answered. If parents and siblings wanted to partici-
pate, they were asked to sign a copy of the consent form.
Informed consent was obtained only after the partici-
pants had read the consent form and had an opportu-
nity to ask questions about the study. A child assent
paragraph was included in the parental consent form.
Parents were also asked to sign a consent for the
release of school information. The child’s present
teacher was asked to complete a rating of the child
according to the format of the Behavior Assessment Sys-
tem for Children (BASC)–Teacher Rating Scale.
Following informed consent and the children’s assent,
siblings were administered projective drawings, self-
report measures, and a semistructured interview. All of
the measures were read to the siblings. Following the
sibling’s assessment, a semistructured interview was
administered to parents. Parents also completed a back-
ground questionnaire and behavior rating scales
(BASC–Parent Rating Scale) on the siblings. All of the
data were collected in one 3-hour session. The infor-
mation from teachers was collected separately by mail.
Sample
Participants were siblings of living pediatric HSCT
patients from UCSF. Only siblings of living patients
were enrolled to avoid including the effect of recent
bereavement as a possible confound. Participants were
excluded if (a) the pediatric recipient had no sibling at
the time of HSCT, (b) the sibling was not between the
ages of 6 and 18 years, (c) the siblings or immediate
family did not speak English, (d) the HSCT took place
more than 7 years ago (an exclusion based on PTSD
theoretical grounds), (e) the parents or siblings did not
want to participate, or (f) the family recently experienced
other significant stressors (e.g., death of a child who had
a previous HSCT).
The selection of cases took place from January
through October 1994. A total of 218 pediatric patients
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Psychosocial Adjustment of Adolescent Siblings
have undergone HSCT at UCSF medical center (July
1982 through October 1994). Of these 218 pediatric
HSCT recipients, 87 were no longer alive at the time
of administration of the sibling protocols. This provided
a pool of 131 families. Eighty-seven families were
excluded from the study for the following reasons:
pediatric recipient had no sibling at the time of bone
marrow transplant (n = 21), the sibling was not between
the ages of 6 and 18 years (n = 20), the parent and sib-
ling did not speak English (n = 14), the patient was in
extremely poor health at the time of administration of
the sibling protocols (n = 6), the bone marrow trans-
plant took place more than 7 years ago (n = 8), the fam-
ily was not available for follow-up (n = 12), and refusal
to participate in the study (n = 6).
The six refusals were for diverse reasons: too busy
to participate, lack of interest, or already completed an
(entirely unrelated) questionnaire on care at UCSF.
Examination of characteristics of families who refused
to participate revealed no differences between partic-
ipants and nonparticipants in terms of family and sib-
ling characteristics, socioeconomic status, ethnicity,
patient’s disease, or place of residence.
The total sample included 44 siblings (21 donors, 23
nondonors, ages 6 to18 years). Only 1 sibling per fam-
ily was interviewed. Children’s mean age was 11.0
years (SD = 3.2). Seventy-one percent (n = 31) were
females. Two of the patients had undergone more than
one HSCT. In the total sample, 43% (n = 19) were of
Caucasian background. Asian Americans (27%, n = 12)
and African Americans (11%, n = 5) were well repre-
sented; there was a small proportion of Native Amer-
icans (6.8%, n = 3) and Latino Americans (4.6%, n =
2). Family income ranged from less than $10,000 per
year to more than $60,000 per year with roughly equal
numbers in each category. The majority of siblings
(73%, n = 32) resided in two-parent homes. Tables 1
and 2 compare the two sibling groups with respect to
various characteristics. The sibling donor group and non-
donor group had no significant differences on any sib-
ling demographic or family variables.
Of the 12 adolescent sibling participants, 3 were
boys and 9 were girls. The mean age at the time of
HSCT was 12 years (SD = 3.2), and the mean age at
the time of the study was 15 years (SD = 1.3).
Before and during the HSCT, psychosocial support
services were provided to the patient and family mem-
bers, including siblings, by the clinical social worker.
A psychologist was available for support on an as-
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Packman et al.

Table 1. Sibling Demographic Characteristics (N = 44)

Group

Variable Sibling Donors (n = 21) Sibling Nondonors (n = 23) Test of Difference

Gender X2(1) = 2.13

Male 4 (19.1%) 9 (39.1%)
Female 17 (80.9%) 14 (60.9%)
With respect to patient, sibling is X2(5) = 0.41
Younger sister 3 (14.3%) 4 (17.4%)
Younger brother 1 (4.8 %) 4 (17.4%)
Older sister 14 (66.7%) 9 (39.1%)
Older brother 3 (14.3%) 4 (17.4%)
Twin sister 0 (0.0%) 1 (4.4%)
Twin brother 0 (0.0%) 1 (4.4%)
Age at interview (years) t(42) = –0.09
M 11.0 11.0
SD 2.9 3.6
Grade in school at interview X2(2) = –0.69
Gradesa 0 to 6 12 (57.1%) 11 (47.8%)
Grades 7 to 9 7 (33.3%) 8 (34.8%)
Grades 10 to 12 2 (9.5%) 4 (17.4%)
Age at HSCT (years) t(42) = 0.41
M 8.5 8.00
SD 3.7 4.3
Time since HSCT (months) t(42) = –0.83
M 34.3 41.6
SD 25.0 32.2
NOTE: Percentages may not add to 100% due to rounding.
a. One sibling had not yet started school and was listed as Grade 0.
*p < .05. **p < .01. ***p < .001.

needed basis. Before the donation procedure, a child life
worker prepared the donor siblings by explaining the
procedure in age-appropriate language.
Assessment Measures
Child Self-Report Measures
The Revised Children’s Manifest Anxiety Scale
(RCMAS). The siblings completed the RCMAS
(Reynolds & Richmond, 1985) a 37-item self-report
instrument that measures chronic, manifest anxiety.
For the total anxiety score, an internal consistency
estimate of .83 was assessed on the norm group of 329
children. A cross-validation sample of 167 children
yielded a similar reliability estimate of .85 (Reynolds
& Richmond, 1985).
Child Post-Traumatic Stress Reaction Index. The
siblings completed the Child Post-Traumatic Stress
Reaction Index (Frederick, Pynoos, & Nader, 1992). The
reaction index has been used to assess symptoms after
exposure to a broad range of traumatic events and uses
a Likert-type 5-point rating scale to rate the frequency
of occurrence of symptoms. A score of 12 to 24 indicates
a mild level of PTSD reaction; 25 to 39, a moderate
level; 40 to 59, a severe level; and greater than 60, a very
severe reaction. Using these guidelines, the correlation
of reaction index scores was reported as .91 on children
with confirmed clinical cases of PTSD (Frederick,
1985). The Post-Traumatic Stress Reaction Index has
been updated (Rodriguez, Steinberg, & Pynoos, 1998),
and studies have reported high internal consistency
(Cronbach’s α = .92) and moderate to strong convergent
validity (.37 to .63) (Kutlac et al., 2000).
Rosenberg Self-Esteem Scale (RSE). The older
siblings (ages 12 years and older) completed the RSE

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 Psychosocial Adjustment of Adolescent Siblings

Table 2. Family Demographic Data (N = 44)

Group

Variable Sibling Donors (n = 21) Sibling Nondonors (n = 23) Test of Difference

Family structure X2(1) = 0.03

Two-parent home 15 (71.4%) 17 (73.9%)
Single-parent home 6 (28.6%) 6 (26.1%)
Ethnicity X2(5) = 2.59
African American 2 (9.5%) 3 (13.0%)
Asian American 8 (38.1%) 4 (17.4%)
European American 8 (38.1%) 11 (47.8%)
Latino American 1 (4.8%) 1 (4.4%)
Native American 1 (4.8%) 2 (8.7%)
Other 1 (4.8%) 2 (8.7%)
Family income (in 1,000s) X2(4) = 1.04
Below 10 2 (9.5%) 3 (13.0%)
10 to 26 4 (19.1%) 4 (17.4%)
26 to 41 5 (23.8%) 3 (13.0%)
41 to 60 5 (23.8%) 7 (30.4%)
More than 60 5 (23.8%) 6 (26.1%)
Mother's education X2(3) = 1.08
11th grade or less 1 (4.8%) 3 (13.0%)
High school diploma 6 (28.6%) 5 (21.7%)
Some college (1 to 3 years) 8 (38.1%) 8 (34.8%)
Four or more years college 6 (28.6%) 7 (30.4%)
Father's education X2(3) = 5.06
11th grade or less 0 (0.0%) 2 (9.1%)
High school diploma 9 (45.0%) 5 (22.7%)
Some college (1 to 3 years) 4 (20.0%) 9 (40.9%)
Four or more years college 7 (35.0%) 6 (27.3%)
NOTE: Percentages may not add to 100% due to rounding.
* p < .05. ** p < .01. ***p < .001.

(Rosenberg, 1965), a standardized rating of self-esteem
consisting of 10 items describing one’s sense of self-
worth. The RSE has a Guttman scale coefficient of
reproducibility of .92, indicating good internal
consistency. Because it is not possible to use the RSE
for younger children because of its adult language, the
wording of items in the RSE was rephrased to develop
the Children’s Self-Image Scale (CSI) (Rosenberg &
Simmons, 1972). In our study, 5 of the older participants
were given both self-esteem measures in a single sitting.
The association between the RSE and the CSI was
near perfect, with a Pearson correlation of r(3) = .908
(p = .033). The RSE was used with older siblings (12
years and older) and the CSI with younger children.
Kinetic Family Drawing–Revised (KFD-R). The
overall level of family support was measured with the
KFD-R (Spinetta, McLaren, Fox, & Sparta, 1981), an
age-independent objectively structured instrument. The
measure is suitable for adults and children 6 years and
older. The KFD-R has been used in a 3-year longitudinal
study to understand patients’ and siblings’ feelings and
attitudes toward childhood cancer (Spinetta & Deasy-
Spinetta, 1981) and in studies of siblings of children with
cancer (Rollins, 1990).
The scoring system yields four scores: family com-
munication, self-image, emotional tone, and KFD-R
total score (overall level of family support). On the KFD-
R, possible scores range from 0 to 35, with the higher
score indicating poorer adjustment (Spinetta et al.,
1981). Two registered art therapists used the Spinetta
et al. (1981) system to score the KFD-R independ-
ently. Interrater reliability was determined by correlating
the two therapists’ scorings for the 44 drawings. Inter-
rater reliability was high for the total score, r(42) = .949.
On the subscales, the interrater correlations were .920,
.810, and .822 for communication, self-image, and
emotional tone, respectively. The KFD-R was used to

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Packman et al.
compare the donor’s and nondonor siblings’ perceptions
of overall family support. In addition, the comments of
the art therapists were used in the qualitative portion
of the study to provide a fuller view of the effects of
the HSCT procedure on siblings.
MPD. The 12 adolescent siblings (ages 13 and older)
completed the MPD (Hawley, 1988). The MPD is a self-
report instrument that assesses adolescent and adult
personality development. The measure contains 112 self-
descriptive statements that are rated on a 5-point scale.
The MPD has eight positive scales, eight negative
scales, eight resolution scales, and three total scales. The
positive scales assess the positive attitudes (e.g., trust,
industry), and the negative scales measure the negative
attitudes (e.g., mistrust, inferiority), which Erikson
proposes as the basic constituents of personality. The
resolution scales assess the degree and direction (positive
or negative) of resolution of each developmental stage.
Total scales assess overall psychosocial adjustment
(Hawley, 1988).
For the MPD positive and negative scales, alpha
coefficients range from .65 to .84, indicating good
internal consistency of the inventory. Research has
demonstrated convergent and discriminant validity for
the MPD. Convergent validity was supported by high
intercorrelations of positive scales (.75 to .85) and neg-
ative scales (.67 to .89; Hawley, 1988). Of theoretical
interest in the current study were the adolescent par-
ticipants’ MPD resolution scores. The resolution scores
represent the status of conflict resolution for each of
Erikson’s psychosocial stages.
Sibling and Parent Interviews
The interview items contained questions that assessed
aspects of the donor’s and nondonor’s experience of and
attitudes about the bone marrow donation. Several of
the content areas (memories/reflections of HSCT,
changes in the family, recommendations to children and
professionals) were based on research by Koocher and
O’Malley (1981) as well as personal communications
with investigators in pediatric psychology. Specific
questions and content areas were also suggested by
members of the UCSF pediatric HSCT team including
physicians, social workers, nurses, and child life spe-
cialists. The interviews included both forced-choice
and open-ended questions and were used to (a) quan-
tify and explore siblings’ subjective responses to the var-
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ious HSCT stages; (b) quantify and explore parents’
memories, feelings, and views of events surrounding
the HSCT; and (c) obtain descriptive material for case
studies.
Sibling Behavior Measures
The BASC. The BASC–Parent Rating Scale (PRS)
(Reynolds & Kamphaus, 1992) assesses the child’s
behavioral problems and social competencies in home
and community settings. The PRS Externalizing
Problems Composite reflects disruptive behavior
problems such as hyperactivity and aggression; the
Internalizing Problems Composite measures anxiety,
depression, and similar “overcontrolled” behavior; and
the Adaptive Skills Composite summarizes prosocial
and other adaptive skills. The PRS composites have high
internal consistency (.80 to low .90) and high test-
retest reliability (.70 to .90).
The BASC–Teacher Rating Scale (TRS) assesses the
child’s behavioral problems and social competencies in
school and contains the same scales and composites as
the PRS. An additional School Problems Composite
reflects academic difficulties including problems of
attention and learning. On the TRS, all composite reli-
abilities (except internalizing problems) exceed .90, and
all composites have high test-retest reliability (.82 to
.91).
Results
Comparison of Donor and Nondonor
Siblings on Self-Report Measures
The t test for independent samples was used to com-
pare donors and nondonors on self-report measures. The
scores revealed significantly higher levels of anxiety in
the sibling donor group, as measured by the RCMAS,
t(42) = 2.89, p = .006. On self-esteem measures, sta-
tistically significant differences were found between the
groups. On both self-esteem measures, the mean scores
for the sibling donor group were significantly higher
(lower self-esteem) than for the nondonor group (RSE:
t(18) = 2.22, p = .040; CSI: t(22) = 2.49, p = .021).
On the Child Post-Traumatic Stress Reaction Index,
no significant differences emerged between donors
Journal of Pediatric Oncology Nursing 21(4); 2004

and nondonors, t(42) = 0.267, p = .791. It is notewor-
thy that approximately one third of the siblings in each
group showed a moderate to severe level of posttrau-
matic stress reaction.
As shown in Tables 3 and 4, on the MPD, 12 ado-
lescent siblings were assessed for resolution of Erik-
sonian stages, 6 from the donor group and 6 from the
nondonor group. Five out of the 6 donors showed low
to moderate resolution in at least one of the five areas
assessed, whereas not any of the 6 nondonors were
below the normal range of resolution on any of the same
areas. Two of the 6 donors showed poor resolution on
the trust-mistrust dimension. Two of the 6 donors
showed poor resolution on the autonomy-shame and
doubt dimension. Three of the 6 donors showed poor
resolution on the initiative-guilt dimension. One of
the 6 donors showed poor resolution on the
industry-inferiority dimension. One of the 6 donors
showed poor resolution on the identity-role confusion
dimension.
Comparison of Donor and Nondonor
Siblings on Behavioral Measures
The t test for independent samples was used to com-
pare donor and nondonor siblings on the BASC-PRS.
The parent-rated scales yielded no statistically signif-
icant differences in adaptive or maladaptive behavior
between donors and nondonors. However, there was a
trend toward a significant difference between the groups
on the depression variable, with parents reporting
higher levels of depression in donors, t(42) = 1.73,
p = .091. The donors’ average score on the withdrawal
variable was quite high (M = 57.71, SD = 10.31). The
nondonors’ mean score on the withdrawal variable was
52.1 (SD = 11.2).
In the area of school problems, teachers reported sig-
nificantly more difficulty for nondonor siblings than for
donors on the overall school problems composite,
t(41) = –2.04, p = .048. On subscales within the school
problems composite, significant differences existed on
the learning problems variable, t(41) = –2.21, p = .033
(examples include spelling or math problems or diffi-
culty with textbooks). There was a trend toward a sig-
nificant difference on the attention-problems variable,
with teachers reporting more attention problems in
nondonors, t(41) = –1.69, p = .098.
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Psychosocial Adjustment of Adolescent Siblings
Findings from Semistructured Interviews
A number of themes emerged from semistructured
interviews with siblings and parents that are particularly
salient to the adolescent subsample (Packman, Crit-
tenden, Rieger Fischer, et al., 1997): (a) Sibling donors
felt they had “no choice” and wanted to be more
involved in the donation decision-making process, (b)
donors experienced considerable loneliness following
donation, (c) siblings felt there was minimal explana-
tion of the HSCT process, and (d) donors reacted to the
stresses of HSCT and parental inattention by with-
drawing and keeping their feelings to themselves,
whereas nondonors reacted with externalizing behav-
iors (attention-seeking acts in school, sharing feelings
with others).
Discussion
For an adolescent, involvement in HSCT is an
extremely stressful experience. Major threats to the
adolescent include loss of control, separation from his
or her peer group, and changes in body image (Sourkes,
1992). At this developmental stage, behavioral responses
to HSCT may include acting-out behaviors, low self-
esteem and self-criticism, and intensification of the
adolescent’s normal self-centeredness (Eth & Pynoos,
1985). The continuing developmental task of integrat-
ing the multiple and changing aspects of self into a
coherent whole may be significantly jeopardized.
For the adolescent siblings, salient findings emerged
concerning Eriksonian theory. A majority of adolescent
donors (5 out of 6) reported unresolved developmen-
tal crises on the MPD. In contrast, none of the 6 non-
donors reported unresolved developmental crises.
According to Eriksonian theory, the trauma of HSCT
occurring during a specific developmental stage could
conceivably create special vulnerabilities by impeding
successful resolution of growth issues during that stage.
Attempts to cope with the trauma and its psychologi-
cal sequelae may affect the adolescent’s ability to tol-
erate the normal anxiety created by developmental
transitions (Johnson, 1989). The combination of the anx-
iety stemming from the trauma plus the normal anxi-
ety created by developmental transitions can impede
mastery of developmental tasks. A low resolution score
on the MPD suggests developmental stress resulting
241
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Table 3. Measures of Psychosocial Development (MPD) Donor Siblings

242 Journal of Pediatric Oncology Nursing 21(4); 2004

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Table 4. Measures of Psychosocial Development (MPD) Nondonor Siblings
from lack of adequate resolution of the specific stage
conflict (Hawley, 1988).
Our findings of unresolved developmental crises in
adolescent donors are congruent with other studies
(Quinn-Beers, 2001; Wilson, 1980). According to Wil-
son (1980), a stress-producing event (such as HSCT)
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Psychosocial Adjustment of Adolescent Siblings
may affect the process of psychosocial development in
two ways. First, the stressor may intensify the pre-
dominant stage of ego development (the stage the sib-
ling was in at HSCT). Second, the stressor may lead to
regression in ego development. In the latter case, the
negative poles of Erikson’s developmental stages may
243
Packman et al.
be exacerbated. That is, a trauma could lead to profound
mistrust, doubt, a sense of vulnerability, guilt, inferi-
ority, and identity confusion. Thus, developmental
issues that had been previously resolved could resur-
face. The developmental effects suggested by Wilson
may be applicable to the adolescent donor subsample.
Developmentally, we expected that all the adolescent
donors were in the identity versus identity confusion
stage at the time they were assessed. As shown in Fig-
ure 3, in 5 of 6 cases, the HSCT stressor may have led
to the resurfacing of developmental issues that had
been resolved. In some instances (e.g., Participants 3
and 5), the HSCT may have also exacerbated the devel-
opmental issues the sibling was trying to master at the
time of HSCT. It is not surprising that the sibling
donors’ maladaptive attempts to cope with the physi-
cal and psychological impact of bone marrow donation
might result in a loss of developmental accomplishments
and inadequate resolution of Eriksonian stages.
The findings of increased anxiety and low self-
esteem in donors parallel the impact of surgical inter-
ventions, in general, on children’s development.
Children perceive invasive medical procedures as
aggressive attacks on their bodies (Marcus, 1986).
Such procedures can trigger anxieties and inner fears.
In our study, sibling donors remarked, “I felt like I
was the one being violated,” and “I felt like I was the
target.” Several siblings voiced concerns about possi-
bly dying during the donation procedure.
When a child undergoes an invasive medical pro-
cedure, normal developmental processes are inter-
rupted and self-esteem may be impaired. The resolution
scores on the MPD for the donor siblings suggest that
self-esteem depends, in part, on successful resolution
of each of Erikson’s developmental crises (Wylie,
1974). The subset of adolescent donors reported unsuc-
cessful resolution of Eriksonian developmental crises.
It is, therefore, not surprising that the entire donor
group (n = 21) reported significantly lower self-esteem
than the nondonor group did.
It may seem counterintuitive that donors would
report lower levels of self-esteem than nondonors
because donors have the opportunity to save their sib-
ling’s life and make the most of their time as “hero.”
However, although the family’s investment in the donor
before surgery is considerable and supportive, the focus
of the family returns to the patient shortly after HSCT.
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Many donors in our study reported feeling especially
isolated after their surgery.
The feelings of isolation and exclusion were evident
in some of the adolescent donors’ family drawings
(KFD-R). One drawing, in particular, by a 16-year-old
adolescent, contained several maladaptive indicators in
the communication and self-image subscales such as
barriers between people, missing body parts, and incom-
pleteness of body (Packman et al., 1998). In addition,
the sibling portrayed the patient (10-year-old brother)
in a pejorative manner, that is, sitting down with his back
turned away from the viewer, in his own world. It is
noteworthy that the sibling excluded herself from the
drawing. This is a telling statement of her view of her-
self in the family unit—she isn’t there. The family
environment is one of isolation and poor communica-
tion between family members (Packman et al., 1998).
The adolescent donor’s depiction of her brother suggests
continuing anger and resentment toward him. The
exclusion of herself suggests that the sibling still views
the patient as the focus of the family’s attention and feels
excluded from the family unit (Packman et al., 1998).
Of interest, isolation is one of Erikson’s developmen-
tal tasks for postadolescence. Because the epigenetic
principle states that all stages are present from the
beginning to the end of life, intimacy versus isolation
is present as a precursor in adolescence. The impact of
isolation during adolescence could negatively affect the
anticipated stage of intimacy versus isolation. The
adults in the family may not have positively resolved
the stage and may be unable to be inclusive in their
responses to the entire family.
From an Eriksonian perspective, psychic trauma
may shatter the child’s sense of basic trust and damage
the child’s sense of autonomy (Terr, 1985). Shame (as
opposed to autonomy) may be related to the child’s tem-
porary loss of personal choice. In pediatric HSCT
cases, the child donor is typically given the opportu-
nity to voice concerns and raise objections. However,
in many interviews, siblings reported that they did not
feel that they really had a choice in the matter. As one
adolescent sibling said, “I wasn’t spoken to about this.
My dad came to me and said ‘you’re doing this’—
it wasn’t my choice.” This temporary loss of personal
choice plus the stressor of the surgical intervention
may rob a child of a sense of personal influence (Terr,
1985). As a result, there may be a loss of develop-
Journal of Pediatric Oncology Nursing 21(4); 2004

Figure 3. Psychological Reactions of Donor and Nondonor Siblings to Hematopoietic Stem Cell Transplantation
mental accomplishments that manifest in internalizing
symptomatology and low self-esteem. In a recent study
of pediatric sibling donors, most donors reported that
the psychosocial aspects of the HSCT process were of
greater significance to them than the physical aspects,
noting that they were not prepared to deal with the
range of emotions they experienced (MacLeod, Whit-
sett, Mash, & Pelletier, 2003). Donors also felt that they
needed more information about the emotional aspects
of being a donor (MacLeod et al., 2003).
A result with major therapeutic implications was the
relatively comparable levels of posttraumatic stress
symptomatology in both groups of siblings. For donors,
HSCT involves the psychological shock of a surgical
intervention followed by ongoing stresses. Although the
nondonor sibling is not subjected to an intrusive med-
ical procedure, the child experiences the stressor of hav-
ing one and possibly two family members (patient and
donor) involved in HSCT.
In evaluating posttraumatic stress responses, it is
useful to consider a broad definition that includes
symptoms such as anxiety and depression, rather than
only symptoms that are part of a Diagnostic and Sta-
tistical Manual of Mental Disorders (fourth edition)
diagnosis (Vogel & Vernberg, 1993). That broader view
gives us a different way to conceptualize the psycho-
Journal of Pediatric Oncology Nursing 21(4); 2004
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Psychosocial Adjustment of Adolescent Siblings
logical reactions of donor and nondonor siblings to
HSCT. That is, although both groups of siblings report
comparable levels of PTSD reactions, the manifesta-
tion may be different. This conceptualization of PTSD
reactions is depicted in Figure 3.
Donor siblings may respond with more internaliz-
ing behaviors, such as anxiety, depression, withdrawal,
and inadequate resolution of Eriksonian developmen-
tal crises. In contrast, nondonors may respond with
externalizing behaviors, such as attention and learning
problems in school and reckless or careless behavior
(problems in impulse control). For donors and non-
donors, Eriksonian developmental crises could pro-
vide opportunities for growth or maladjustment.
Unfortunately, the MPD can be used only with sib-
lings 13 years or older. We do not know whether the
same pattern of results would be found in the younger
siblings. It is too early to predict whether the findings
on the Erikson MPD measure shown by adolescent
donors will lead to successful or unsuccessful resolu-
tion of the psychosocial stage they were in at the time
of the interview (identity versus role confusion) and of
later developmental stages. Wilson (1978) noted that
the occurrence of a traumatic event during adolescence
might lead to prolonged moratorium (a period of actively
searching to find one’s identity). It will be interesting
245
Packman et al.
to see if this happens with the participants in this study.
Further research of a longitudinal nature is required to
provide information on this.
Limitations
Some methodological issues limit the nature of the
conclusions that may be drawn from this study’s find-
ings. To allow a maximum intake of cases, a cross-
sectional and retrospective design was employed. As a
result of this design, there was considerable variabil-
ity in the period of time that elapsed between HSCT and
the time the siblings were assessed. Thus, the length of
time since HSCT as well as subsequent life experiences
may have influenced sibling reports. Furthermore, the
interview data were based on recall and are subject to
the limitations of siblings’ memories.
Potential limits to the generalization of findings
may arise because all participants were drawn from only
one HSCT center. Other transplant centers may draw
patients from populations who have different demo-
graphics and different patterns of family interaction.
Other centers may provide different predonation and
postdonation psychosocial services for families.
Implications for Practice
According to Eriksonian theory, one of the many
tasks of development for adolescents is gaining a sense
of autonomy and independence. An adolescent donor’s
need for independence is taken into consideration by
adequately including them in the HSCT decision-making
process. In interviews, many donors stated that there
was minimal explanation of the HSCT, they felt unin-
volved in the donation decision-making process, and
they felt as if they had no choice. A 15-year-old sibling
suggested that they “put the transplant procedure into
human words. Put it in terms so that we can understand
it.” A 17-year-old echoed these thoughts:
I had terms thrown at me that I didn’t under-
stand. They had all these technical words and I’d
go “yeah” and nod and I really didn’t understand.
I’d tell another kid that if there is something you
don’t understand, ask twice about it. If you are
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worried, find out about it. Most kids I’ve seen don’t
ask questions, they just say “do it.”
Many adolescent donors also stated that they were
angry at their parents during and following the HSCT
process. It is possible that the siblings’ anger is a
consequence of their disappointment with parents for
not adequately considering their need for independ-
ence and autonomy and for not including them in the
decision-making process.
Our findings suggest a need for intervention strate-
gies specifically tailored for adolescent siblings, espe-
cially donors. As noted by Quinn-Beers (2001), peer
support and support groups may be valuable, but fam-
ily interventions may be particularly useful. Overall, it
is important to understand and respect the adolescent’s
specific needs within the context of overall adolescent
development. The assistance of health care profes-
sionals is most effective when understanding and respect
for the adolescent’s position are coupled with steady
guidance (Weil, 2000).
Technical medical information, decision options,
and potential risks should be presented in small sequen-
tial steps. The need for independence is taken into con-
sideration by adequately including the adolescent in all
aspects of the decision-making process (Enns & Pack-
man, 2002). Importantly, as an adolescent moves devel-
opmentally to become more independent, the family also
feels the stress of this process (Eth & Pynoos, 1985).
Parents under the additional stress of the HSCT process
may be less able to be supportive of their adolescent.
In joint sessions with adolescents and parents, pediatric
oncology nurses can model for both parent and ado-
lescent an attitude of respect for the other’s point of view
(Enns & Packman, 2002). Thus, when struggles over
autonomy and decision making occur in the session, it
can be useful to acknowledge the legitimacy of both
sides as well as the normality of the process.
In addition, the need for social support is crucial in
times of stress (Erikson, 1959, 1968). Emotional social
support has been linked with the mastery of develop-
mental tasks within the adolescent period (Harter,
1990). Research has indicated that the primary source
of emotional support for chronically ill adolescents is
the family system (Ritchie, 2001). The findings from
the current study suggest that adolescent siblings, espe-
cially donors, would benefit from emotional support
Journal of Pediatric Oncology Nursing 21(4); 2004

from family members. Pediatric oncology nurses can
assist parents in finding an effective balance between
independence and connection to parents before, during,
and after the HSCT process: “Parents must be ready to
let go and yet stay connected to guide, and be protec-
tive” (Garcia-Preto, 1999, p. 281). Pediatric oncology
nurses can also help parents to discover ways in which
siblings can play a meaningful role in the patient’s
treatment. Sibling donors have suggested the importance
of two sources of emotional support and information,
both parents and health care professionals (MacLeod
et al., 2003). Parental information helps to comfort the
donor, “while information from professionals helps
make it real and truthful” (MacLeod et al., 2003, p. 229).
In summary, the MPD results, along with the find-
ings from other objective measures, projective draw-
ings, and interviews, suggest that adolescent donors may
be struggling for independence while integrating issues
such as trust and mistrust, shame and doubt, initiative
and guilt. Erikson views development as the resolution
of conflicts from opposing forces. Ideally, the child
develops a favorable ratio in which the positive aspects
dominate the negative. In Eriksonian theory, develop-
ment is a lifelong process: Sometimes childhood con-
flicts are not resolved satisfactorily until adulthood. The
adolescent donors were in the process of developing a
positive sense of identity. Part of the ongoing process
involves making sense of and understanding the HSCT
experience. Pediatric oncology nurses are in a position
to help minimize the adjustment difficulties of siblings
to the HSCT process.
Acknowledgments
The authors would like to thank the siblings and par-
ents who invited us into their lives and their homes and
who wanted so much to help other families going
through the HSCT process. We also thank Gwen Haw-
ley, Ph.D., for her helpful comments and suggestions
on this manuscript.
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