ILLNESS,

Eakes et al.CRISIS
/ CHRONIC
& LOSS
SORROW
(April 1999)

Chronic Sorrow: The Experiences

of Bereaved Individuals
Georgene G. Eakes
East Carolina University
Mary L. Burke
Margaret A. Hainsworth
Rhode Island College

This study investigated the occurrence of chronic sorrow among individuals who
experienced the death of a loved one. In-depth interviews were conducted with
fourteen parents who had experienced the death of a child, ten people who had suf-
fered the death of their spouses, and ten individuals who had had a family member
die. Interviews were transcribed and data were sorted into categories, with recur-
ring themes identified. Thirty-three (97 percent) of those interviewed evidenced
chronic sorrow. Confronting disparity with social norms and situations that
brought memories to mind most frequently triggered recurrence of grief-related
feelings. Subjects used action-oriented, cognitive, and interpersonal coping
strategies to deal with these episodes of grief. These findings bring into question
the expectation inherent in traditional grief theories that emotional closure is a
necessary outcome of the grieving process.

The term chronic sorrow was introduced into the literature in 1962 by
Olshansky, who coined the term to describe his observations of the
regrief associated with parenting a mentally retarded child. Olshansky
posited that the never-ending nature of some loss experiences belied
resolution of the grieving process. Thus, chronic sorrow was a normal
response to an abnormal situation, allowing for intervals of sadness to be
interspersed with periods of happiness and adjustment to the ongoing
loss situation.
Almost twenty years elapsed before any scientific investigation of the
concept was undertaken (Wickler, Wasow, and Hatfield 1981). Of late,
there has been a resurgence of interest in chronic sorrow. Since 1989,

Address correspondence to eakes@mail.ecu.edu.

Illness, Crisis & Loss, Vol. 7, No.2, April 1999 172-182

© 1999 Sage Publications, Inc.

172
 Eakes et al. / CHRONIC SORROW 173

members of the Nursing Consortium for Research on Chronic Sorrow

(NCRCS) have conducted ten studies examining the relevance of the
concept to individuals experiencing a variety of loss situations. These
studies have focused on individuals affected with chronic and/or life-
threatening conditions, family caregivers, and, most recently, bereaved
individuals. It was the research on the bereaved that provided new
insights into the dimensions of chronic sorrow and contributed signifi-
cantly to the development of the middle-range nursing theory of chronic
sorrow (Eakes, Burke, and Hainsworth 1998). This article reports the
findings of these three landmark investigations of chronic sorrow in per-
sons who had experienced the death of a loved one.

REVIEW OF LITERATURE
The first documented research on the concept of chronic sorrow
(Wickler, Waslow, and Hatfield 1981) found that grief among parents of
mentally handicapped children waxed and waned throughout the
child’s growth and development. This study not only offered support
for Olshansky’s (1962) clinical observations but also established the
foundation for future research. Subsequent research defined chronic
sorrow more specifically as pervasive sadness that is permanent, peri-
odic, and progressive in nature and provided evidence that chronic sor-
row is commonly experienced by parents of young children with diverse
mental and physical disabilities (Burke 1989; Clubb 1991; Damrosch and
Perry 1989; Fraley 1986, 1990; Golden 1994; Hummel and Eastman 1991;
Kratochvil and Devereux 1988; Mallow 1994; Phillips 1991; Seideman
and Kleine 1995).
Analyses of the concept of chronic sorrow (Lindgren et al. 1992; Teel
1991) helped to clarify the nature of chronic sorrow and articulated the
following defining characteristics:
1. A perception of sadness or sorrow over time in a situation with no predict-
able end.
2. Sadness or sorrow that is cyclic or recurrent.
3. Sadness or sorrow that is triggered internally or externally and brings to
mind the person’s losses, disappointments, or fear.
4. Sadness or sorrow that is progressive and can intensify. (Lindgren et al.
1992, 31)

The NCRCS was established to investigate the relevance of chronic

sorrow for individuals and family caregivers in a variety of ongoing loss
situations (Burke et al. 1992; Eakes et al. 1991). Toward that end, initial
NCRCS studies focused on adults diagnosed with chronic or life-
threatening conditions. Diverse samples of individuals diagnosed with
cancer, Parkinson’s disease, or multiple sclerosis and samples of infertile
174 ILLNESS, CRISIS & LOSS (April 1999)

couples were interviewed using the Burke/NCRCS Chronic Sorrow

Questionnaire for Affected Individuals (Eakes 1993) as an interview
guide. Findings from these studies revealed that 86 percent of affected
individuals evidenced chronic sorrow (Burke 1992; Eakes 1993; Eakes et al.
1993; Hainsworth 1994; Hainsworth et al. 1993; Hainsworth, Eakes, and
Burke 1994).
Subsequent NCRCS research endeavors centered on family caregiv-
ers of adult children or spouses with ongoing disabilities. Using the
Burke/NCRCS Chronic Sorrow Questionnaire (Caregiver Version) as a
guide, parents of mentally ill adult children, spouses of individuals
diagnosed with multiple sclerosis, and parents of adult children with
multiple sclerosis were interviewed. Additionally, a secondary analysis
was conducted on data from interviews with wives of mentally ill hus-
bands. An overwhelming percentage (89 percent) of these family care-
givers were found to experience chronic sorrow (Burke 1993; Eakes 1995;
Hainsworth 1995; Hainsworth et al. 1995).
Findings from these NCRCS studies demonstrate that chronic sorrow
is not restricted to parents of young children with disabilities; rather, it is
likely to be experienced by individuals involved in a variety of ongoing
loss situations. Furthermore, NCRCS findings indicate that while there
is potential for the feelings associated with chronic sorrow to be progres-
sive, they do not always intensify over time.
To date, all published research on chronic sorrow has focused on indi-
viduals involved in situations characterized by ongoing loss. Indeed,
involvement in an ongoing loss situation is documented as a critical
antecedent to the experience of chronic sorrow. Yet, in analyzing data
and reflecting on personal loss experiences, members of the NCRCS
began to explore the dynamics of chronic sorrow and to question
whether chronic sorrow might also be associated with more circum-
scribed loss events. To seek an answer to this question, three research
studies were undertaken to investigate the occurrence of chronic sorrow
among persons who had earlier experienced the death of a loved one.
These studies marked a significant change in the focus of chronic sorrow
research since previous studies had involved only individuals in ongoing
loss situations.

METHOD
Three concurrent qualitative studies were conducted to determine if
chronic sorrow was evidenced in bereaved individuals. Convenience
samples were drawn from a compassionate friend’s organization, a mul-
tiple sclerosis society, and a hospice program. A representative of each
organization was approached by one of the researchers, and the nature
of the research explained. Names of individuals interested in
 Eakes et al. / CHRONIC SORROW 175

participating were obtained and personal contacts made to schedule pri-

vate interviews at mutually convenient times and places. To qualify for
inclusion, individuals had to have experienced the death event a mini-
mum of two years prior to the subject’s interview. This parameter was
established to allow for acute grief reactions to subside. Written consent
for voluntary participation was obtained from all subjects, and pseudo-
nyms were assigned for protection of anonymity. The studies were
approved by the Human Subjects Review Committee for each sponsor-
ing institution.

SAMPLE
A total of thirty-four individuals participated in the bereavement
studies: fourteen parents, including two couples, who had experienced
the death of a child; ten persons whose spouses had died; and ten indi-
viduals who had experienced the death of a close family member (hus-
band, wife, grandparent, sibling) from a long-term illness. The sample
comprised twenty-nine (85 percent) women and five men (15 percent)
who ranged in age from thirty-three to sixty-six years, with a mean age
of fifty and one half years. Length of time since the death event ranged
from two years to more than twenty years, with the most in the two- to
five-year range. The majority of participants were Catholic (18/53 per-
cent), and the most frequently cited (12/35 percent) household income
category was more than $40,000 per year. Twenty-one (62 percent) of the
subjects indicated that the death event was sudden and unexpected; the
remaining thirteen (38 percent) described the death as expected.

DATA COLLECTION PROCESS

Data were collected using the Burke/NCRCS Chronic Sorrow Ques-
tionnaire (Bereaved Individual Version), a revision of the interview
guide developed and validated by Burke (1989) for use with parents of
children diagnosed with spina bifida and subsequently modified for use
with individuals affected by a chronic or life-threatening condition
(Eakes 1993) and with family caregivers. For this study, the open-ended
questions were simply rephrased so they could be directed to persons who
had experienced the death of a loved one. For example, questions focused
on whether there were times when the individual reflected on the death
and reexperienced some of the same feelings that had been felt at the time
of the loss. Moreover, specific circumstances and situations that triggered
the recurrence of these grief-related feelings were also explored.
The researchers conducted individual interviews, and they lasted
between one and two hours. The audiotaped interviews were tran-
scribed verbatim, and data were sorted into categories and common
176 ILLNESS, CRISIS & LOSS (April 1999)

themes identified. The presence or absence of chronic sorrow was estab-

lished by applying the definition of chronic sorrow to individuals’
responses to the questions posed. Independent data analysis by two
NCRCS researchers resulted in an interrater reliability of 1.00.

FINDINGS

INCIDENCE
Ninety-seven percent of the bereaved individuals studied evidenced
chronic sorrow. All of the parents (fourteen) who had experienced the
death of a child, all (ten) of those whose spouse had died, and nine of the
ten people who had experienced the death of a close family member fol-
lowing a long-term illness evidenced chronic sorrow. The permanence
and pervasiveness characteristic of chronic sorrow in ongoing loss situa-
tions were also evidenced in bereaved individuals, as reflected in the
comments made by a mother who had experienced the death of her child
two decades prior to the interview:

It’s a continual process, and people who say it ends after whatever—two
years or a year—or that after the fist year you should be okay, that’s crazy!
It’s not a true adage. Time does change you, and you can adapt to change,
but for me it doesn’t heal the scar that’s left. Even after twenty years, you
still remember and it still hurts, and no matter what people tell you, this
will never go away.

Another bereaved mother’s reflections exemplified the periodicity that

typifies chronic sorrow:

“You think you are doing well, and then all of a sudden it hits you again. I
guess you have to get through that. Probably another couple of months
will be okay, and then something else happens.”

The words of a widower also echoed the periodic nature of the chronic
sorrow experience:

I feel as though I’ve come a long way, but all that means is these feelings
are fewer and further between. When I really stop and think I’m not with
her anymore and the kids don’t have their mom anymore, they come back.

TRIGGERS
When asked what triggered recurrence of the grief-related feelings,
subjects most often described circumstances and situations that
prompted recognition of a disparity with social norms (28/33) and situa-
tions that brought memories to mind (28/33). A woman whose mother
 Eakes et al. / CHRONIC SORROW 177

had died two years earlier provided an example of disparity with social
norms. She noted that, unlike her peers, she no longer had her mother to
share things with and at times this realization precipitated a return of the
grief-related feelings:

I was in the habit of calling her [mother] three to four mornings every
week. I do not have that mother to call now. If something happens to me,
good or bad, I don’t have my mother to spiel it off to.

These comments by a widow offered another illustration of how dispar-

ity with social norms might trigger chronic sorrow:

My daughters would have been going to the father/daughter dance at the

school with their father, but my brother-in-law and nephew ended up tak-
ing the two of them. It was very emotional for me. In my heart, I was just
pained and I cried after they left. I just kept thinking, it’s not supposed to
be like this.

Subjects who indicated that they experienced chronic sorrow when

confronted with memories of a past reality added that these memories
were often stirred by anniversaries or special events in some way con-
nected to the deceased loved one. A young woman whose husband had
died three years earlier said, “His birthday and the anniversary date of
his death, that’s when I hurt a lot. It’s his birthday, my birthday, the chil-
dren’s birthdays, and Christmas time.” Another widow associated
return of the grief-related feelings both with a day of the week and a
date:

Well, I’ll tell you that today, Wednesday the 24th, is always a tough day for
me. He died on a Wednesday, and it was the 24th of January. Also, he was
born on the 24th so that’s not a good number for me.

A bereaved mother shared these examples of chronic sorrow triggered

by her memories: “When the flowers come up in the spring, I feel the
sadness. When I go to the ocean, which is a place I remember was a favor-
ite of hers, that’s when the pain comes up.” Study participants also cited
role changes necessitated by the death of their loved one, although less
frequently (6/33), as prompting recurrence of the grief-related feelings
associated with chronic sorrow.

COPING STRATEGIES
To explore coping strategies used to deal with the feelings associated
with chronic sorrow, subjects were asked, “What helps?” Responses
were categorized as action oriented (e.g., doing a favorite hobby), inter-
personal (e.g., talking with a trusted friend), cognitive (e.g.,
178 ILLNESS, CRISIS & LOSS (April 1999)

concentrating on positive aspects of one’s life), emotional (e.g., crying),

or spiritual (e.g., relying of faith in God). Thirty of the thirty-three
bereaved individuals who evidenced chronic sorrow described the use
of action-oriented coping strategies. For example, one widow used exer-
cise as a way of coping with her grief-related feelings: “I walk and I walk
and I walk. I don’t know how many pairs of sneakers I’ve worn out from
walking!” Another widow dealt with her feelings of chronic sorrow by
reaching out to others: “I get out and help somebody else or just get out
and get busy. I’ve learned to do that.”
Other prevalent coping mechanisms used by bereaved individuals
were cognitive (27/33) and interpersonal (25/33). Cognitive strategies
are reflected in the following statements: “I think one of the best things is
to remember the happy times and remember some of the funny things,
some of the inside family jokes.” “I have wonderful memories which are
mine; no one can take that away from me, and that’s what helps me.”
Examples of interpersonal coping mechanisms included the follow-
ing: “Sometimes just to pick up the phone and call somebody else to talk
to you, somebody that you know understands these feelings. Talking to
them is really helpful.” “Find a person you feel really comfortable talk-
ing to. That’s what I think is really the best thing to do. Pick who you are
going to talk to; pick who you share with.”
Interestingly, fewer than half (14/33) cited coping strategies catego-
rized as either emotional or spiritual in nature.

RECOMMENDATIONS TO
HEALTH CARE PROFESSIONALS
The researchers were interested in determining what individuals
with chronic sorrow perceived as helpful and not helpful to them as they
periodically revisited their grief. More specifically, they were asked
what recommendations they would make to health care professionals to
assist them as they periodically revisited the grief associated with the
death of a loved one. Responses were categorized as roles professionals
can assume in their contacts with clients.
Two roles emerged as most helpful to those experiencing chronic sor-
row subsequent to the death of a significant other. The majority of subjects
(18/33) described characteristics consistent with the role of empathetic
presence. These included taking time to listen, offering support and
reassurance, focusing on feelings, and appreciating the uniqueness of
the individual. The words of a widow emphasize the importance of this
professional role:
They [professionals] need to be aware that they can’t make it better, but
they can help by letting you talk and just listening. It doesn’t help when
 Eakes et al. / CHRONIC SORROW 179

they say “I know what you’re going through” because nobody can possi-
bly know how I feel—nobody!

Also, behaviors consistent with the role of caring professional were cited
(14/33) as being helpful. Subjects noted that professionals’ sensitivity,
respectfulness, patience, and compassion were beneficial to them as
they coped with chronic sorrow; moreover, they cited follow-up contact
from professionals as helpful.

DISCUSSION/CONCLUSIONS
Overwhelmingly, individuals who had suffered the death of a loved
one evidenced chronic sorrow. Indeed, 97 percent of those interviewed
described periodic recurrence of grief-related feelings associated with
their loss experience. For these individuals, the void created by the death
of a significant other remained, at least to some extent, unfilled. When
situations or circumstances caused them to confront this gap between
“what was” and “what is,” chronic sorrow was experienced. These epi-
sodes were most commonly triggered by recognition of disparity with
social norms, that is, husbands without wives, wives without husbands,
parents without children, and children without parents. Memories,
often associated with anniversary events, also prompted resurgence of
the grief-related feelings in bereaved individuals. Characteristics of
chronic sorrow among bereaved individuals (permanence, pervasive-
ness, periodicity) mirrored those of affected individuals, family caregiv-
ers, and others involved in ongoing loss situations. Consistent with
other study findings (Eakes 1993; Hainsworth 1994, 1995; Hainsworth et
al. 1994), bereaved subjects most frequently used action and cognitive
coping strategies to deal with their feelings. The empathetic and caring
professional roles perceived as helpful were also consistent with those
identified by individuals involved in ongoing loss situations, either as
an affected individual or as a caregiver (Eakes et al. 1993).
Documenting chronic sorrow among individuals who had experi-
enced the death of a loved one marked an important change in the focus
of research on chronic sorrow. Heretofore, research on chronic sorrow
focused solely on those involved in ongoing loss situations, either as an
individual affected with a chronic or life-threatening illness or as a fam-
ily caregiver (Burke 1989, 1992, 1993; Clubb 1991; Damrosch and Perry
1989; Eakes 1993, 1995; Eakes et al. 1993; Fraley 1986, 1990; Golden 1994;
Hainsworth 1994, 1995; Hainsworth et al. 1993; Hainsworth, Eakes, and
Burke 1994; Hummel and Eastman 1991; Lindgren 1996; Mallow 1994;
Phillips 1991; Seideman and Kleine 1995; Wickler, Wasow, and Hatfield
1981).
180 ILLNESS, CRISIS & LOSS (April 1999)

Moreover, involvement in a situation with no predictable end was

one of the defining characteristics of chronic sorrow documented in the
literature (Lindgren et al. 1992; Teel 1991). In contrast, subjects in the
studies reported here had experienced a single loss event. Unlike those
individuals whose chronic sorrow was triggered by never-ending pres-
ence of the loss, for the bereaved it was the presence of the absence cre-
ated by the loss that triggered chronic sorrow. This led to the realization
that it was the presence of ongoing disparity created by the loss, rather
than the ongoing nature of the loss, that was common to the experience
chronic sorrow. The researchers concluded, therefore, that any signifi-
cant loss that results in ongoing disparity may lead to the development
of chronic sorrow. The periodic recurrence of the grief-related feelings
occurs when the disparity created by the loss comes clearly into focus for
the individual. Based on this new insight, the definition of chronic sor-
row was revised to the periodic recurrence of permanent, pervasive sad-
ness or other grief-related feelings associated with ongoing disparity
resulting from a loss experience.
These findings call into question the expectation inherent in tradi-
tional grief theories that closure is a necessary outcome of the grieving
process. Moreover, the bereaved individuals interviewed in this study
periodically revisited grief-related feelings associated with the death of
their loved one for as long as twenty years following the death event, yet
these episodes of sadness were not incapacitating. The periodic nature
of chronic sorrow allowed for times of happiness to be interspersed with
the episodes of regrief, thereby preventing chronic sorrow from being
incapacitating. Future research endeavors need to continue to explore
the relevance of this open-ended model of grief among individuals who
have experienced various loss events. Also, research needs to focus on
determining whether professional interventions for those experiencing
chronic sorrow can eliminate the ongoing disparity and, consequently,
chronic sorrow.

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Georgene G. Eakes, Ed.D., R.N., is a professor at East Carolina University School of

Nursing in Greenville, North Carolina, where she teaches courses in psychiatric/mental
health nursing, research in nursing, and perspectives on death and dying for profession-
als. She is a member of Beta Nu Chapter of Sigma Theta Tau International Honor Society
for Nurses and a founding member of the Nursing Consortium for Research on Chronic
Sorrow (NCRCS). Along with her NCRCS colleagues, Dr. Eakes has been involved in
conducting a number of research studies on the experience of chronic sorrow among per-
sons affected with chronic conditions, family caregivers of the chronically ill, as well as
bereaved individuals. She has presented her research findings in national and interna-
tional forums and has published widely in scholarly journals on topics related to grief and
loss.

Mary L. Burke, D.N.Sc., R.N., received her Doctor of Nursing Science Degree in the
Family Studies Cognate from Boston University. She is a professor of nursing, pediatric
specialty, at Rhode Island College and a member of the Nursing Consortium for Research
on Chronic Sorrow. Dr. Burke has conducted four studies on chronic sorrow.

Margaret A. Hainsworth received her Ph.D. from the University of Connecticut in Edu-
cation Administration. She is a professor of nursing with a specialty in psychiatric-
mental health at Rhode Island College. Dr. Hainsworth has conducted four studies on
chronic sorrow.