THE LIVED EXPERIENCE OF CHILDHOOD CANCER:

ONE SIBLING’S PERSPECTIVE

JOHN S. MURRAY, RNC, MS, CPNP, CS

Doctoral Candidate–Doctoral Program in Clinical Nursing Research,
The University of Texas at Austin, Austin, Texas, USA

The demands of cancer on children and their parents have been studied and under-
stood for many years now. However, very little focus has been placed on one other
very important part of the family system—the siblings. In the health care profession
today, there is a growing awareness that the psychosocial needs of siblings of children
with cancer are less adequately met than those of other family members. Research
suggests that siblings are particularly vulnerable to adjustment difficulties (depression,
anger, anxiety, feelings of guilt, and social isolation), and they experience similar
stress to that of the ill child. Siblings have been identified as the most emotionally
neglected and unhappy of all family members during serious childhood illnesses. The
purpose of this study was to gain a better understanding of the lived experience of
one 14-year-old sibling’s experience with childhood cancer. Through the qualitative
research process of phenomenology, the researcher gained a greater understanding of
the participant’s experience and how the childhood cancer experiences affected her
and her family. Themes that emerged through the process of content analysis included
emotional intensity, increased empathy for others, personal growth, need for support,
and desire to help others.

The ache in my sister’s side would begin a long journey for our family
through distress, death, and love. We were all on the same road, but miles
apart. As her illness became the focal point in our lives, jealousy, anger,
and confusion jumbled in my mind. I wondered if our family would ever
be the same.
I began to feel hatred for my sister. I often thought if I got sick, maybe I
too would receive presents and sympathy. My sister stood bathed in the

The author gratefully acknowledges the support and encouragement of the U.S. Air Force
Nurse Corp. The author also sincerely thanks David Kahn, PhD, RN; Doris Coward, PhD, RN;
and Melanie Percy, PhD, RN, CPNP, The University of Texas at Austin, School of Nursing, for
their review of data for this manuscript. A special thank you is extended to J.S. for sharing her
story so that others working in pediatric oncology nursing can learn from her experience in hopes
that it will help other siblings of children with cancer.
The views expressed in this article are those of the author and do not reflect the official policy
or position of the U.S. Air Force, Department of Defense, or the U.S. Government.
Address correspondence to Lt. Colonel John S. Murray, 7700 N. Capital of Texas Highway,
Apartment #1317, Austin, TX 78731, USA. E-mail: JMURRAY325@aol.com

Issues in Comprehensive Pediatric Nursing, 21:217–227, 1998

Copyright ã 1998 Taylor & Francis
0146-0862/98 $12.00 + .00 217
218 J. S. Murray

spotlight, and I’d been thrown into the corner. I resented her. I thought
everyone was totally insensitive to me. People would always ask me how
she was doing, never how I was doing. I was suffering just as much as she
was—not physically, but emotionally. I became very tough on the outside,
but I was dying on the inside. (Murray, 1995, p. 62)
—From a sibling of a child with cancer

The diagnosis of cancer in any family member can be a devastating

experience for all family members. Nonetheless, when the family mem-
ber is a child, the experience seems even more traumatic. This announce-
ment changes our view of the natural order of life where typically it is
the elderly that suffer and die and the young who carry on with the work
of life (Rollins, 1990). It should come as no surprise that the news of
such a disease, with all its uncertainty and uneasiness, would be ample
cause for crisis in any family system. “The overwhelming demands of
this disease, including the prognosis, are unpredictable elements that cause
enormous stress for all family members and must be dealt with on a daily
basis” (Murray, 1995, p. 62).
The demands of the childhood cancer experiences on children and
their families have been understood for several years (Binger, Albin, Feurstein,
Kushner, Zoger, & Mikkelson, 1969; Chesler & Barbarin, 1987; Cobb,
1956; Morrow, Carpenter, & Hoagland, 1984). However, research studies
demonstrate the paucity of focus that has been placed on siblings. Today,
there is a growing mindfulness among health care professionals that the
psychosocial needs of siblings of children with cancer are less adequately
met than those of other family members. These siblings are particularly
vulnerable to adjustment difficulties (depression, anger, anxiety, feelings
of guilt, and social isolation) and they experience similar stress to that of
the ill child (Murray, 1999a; Spinnetta, 1981). Siblings have been identi-
fied as the most emotionally neglected and unhappy of all family mem-
bers during serious childhood illnesses (Chesler & Barbarin, 1987; Murray,
1999b; Spinnetta, 1981).

LITERATURE REVIEW

An extensive review of the literature on siblings of children with cancer

(Murray, 1999a) clearly shows that the childhood cancer experience is a
stressor that may increase subjective feelings of stress by well siblings
and in some cases lead to decreased psychosocial competencies and in-
creased psychopathologies. Research on siblings of children with cancer
has made some advancement over the past several years. Murray (1999)
reports that research has expanded from identifying psychosocial prob-
lems after the child with cancer’s death to recognizing stressors during
One Sibling’s Perspective 219

the illness experience (Binger et al., 1969; Cain, Fast, & Erickson, 1964;
Cairns, Clark, Smith, & Lansky, 1979; Cobb, 1956; Murray, 1995). The
authors found that the most immediate reactions had a profound empha-
sis on guilt, which included depression, withdrawal, accident-prone be-
havior, and constant provocative testing. Murray (1999a) cites that other
findings as reported by parents included feelings of loneliness, sadness,
and unavailability of parents to well siblings. These early studies are
meaningful in that they began to extend the focus of attention to the well
siblings. Because of the small sample size, flawed research designs, in-
clusion of siblings with psychiatric illness, and major emphasis on after-
death responses, they have limited scope of application (Murray, 1999a).
Murray (1999a) notes that, based on these findings and concerns, re-
searchers in the late 1970s continued to examine problems in the well
sibling during illness. Although research previously identified many ab-
rogating effects of the cancer experience on healthy siblings, researchers
during the late 1970s and early 1980s began to identify positive effects as
well (Iles, 1979; Kramer, 1981). These researchers noted that negative
consequences included emotional stress, sense of emotional deprivation,
decrease in parental tolerance, increase in parental expectations, anger,
and guilt. Positive results were an increased sensitivity and empathy for
patient and others, enhanced personal maturation, and an increased ap-
preciation for life. Further research in the latter part of the 1980s yielded
contrasting notable findings. More siblings reported no change in their
experiences following the diagnosis than had reported either negative or
positive changes (Koch-Hattem, 1986).
According to Murray (1999a), the late 1980s and early 1990s studies
investigated the adjustment of siblings to childhood cancer and the vari-
ables that may be associated with that adjustment, as well as identifying
and describing behavioral and cognitive coping strategies used by sib-
lings. Cohen (1985) found factors such as parent depression, marital ad-
justment to the childhood cancer experience, availability of support, and
parent-sibling communication patterns to be predictors of sibling adjust-
ment. Coping strategies used by siblings include positive thinking, talk-
ing with others, open communication, and opportunities to visit the child
with cancer in the hospital (Walker, 1988). Contemporary studies have
been targeted at identifying what nursing interventions nurses believe to
be most important in facilitating the coping efforts of patients, parents,
and siblings with the effects of the disease of childhood cancer and its
treatment (Walker et al., 1992). These researchers reported that open
communication was rated as one of the most important facilitative behav-
iors for patients, parents, and siblings. Other common sibling facilitative
behaviors included making siblings feel special, encouraging consistent
discipline for all children, and encouraging visits to the hospital or clinic.
220 J. S. Murray

In addition, descriptive research exploring interventions used by nurses

working with children and families with cancer to provide social support
to well siblings indicated that the two most frequently used nursing inter-
ventions are encouraging parents to spend time with their other children
and providing honest responses to questions asked by siblings (Murray,
1995).
The effect of childhood cancer experience on a sibling’s life experi-
ence has significant consequences for later development. Through clinical
experience, I noted an increased perception, sensitivity, maturity, jealousy,
and guilt in siblings within my support group for siblings of children
with cancer. As a result of these clinical observations, I was interested in
the lived experience of a sibling of a child with cancer. Many questions
have arisen: What is the meaning of cancer for siblings of children with
cancer? How do siblings integrate the childhood cancer experience into
their lives? How can nurses help siblings cope and better adapt during this
experience?
The purpose of the present study was to gain a better understanding of
the lived experience of one 14-year-old sibling’s experience with child-
hood cancer. Through the qualitative research process of phenomenology
a greater understanding of the participant’s experience and how the child-
hood cancer experience affected her and her family was elicited.

METHODS

Sample

J.S. is a 14-year-old high school student. Her sister, C.S., was diagnosed
with childhood leukemia at the age of 9 when J.S. was 12. J.S. was
part of a sibling support group, Siblings That Are Really Special, when
her mother approached me indicating that J.S. wanted to share her ex-
periences as a sibling of a child with cancer so that others could learn
from her experiences. After informed consent was obtained from J.S. and
her mother according to Institutional Review Board guidelines, the pro-
cess was begun to allow J.S. to share her story.

Procedure

The phenomenological approach to research was chosen as it provided

a method for the researcher to better comprehend the rich meaning of
this experience to a well child (van Manen, 1994). In this methdology,
the participant and researcher interact with each other to describe and
understand an experience from the participant’s point of view. The
phenomenology research method focuses on describing subjects’ lived
experiences as they interact with their environments. With this method,
One Sibling’s Perspective 221

nurse–researchers collect data through observations, interviews, and video-

taping. They identify focal meanings or themes by describing, analyzing,
and validating subjects’ words. From these processes, researchers de-
velop rich, detailed descriptions of subjects’ lived experiences and their
meanings (Liehr & Marcus, 1994). The lived experience of J.S. was ex-
plored to reveal her personal journey to assist in understanding the chal-
lenges of having a sister with cancer.
In phenomenological research, techniques for obtaining information
on lived experiences also include eliciting written narratives or protocol
writing and participant observation (van Manen, 1990). For this study,
J.S. requested she write down her own experiences. J.S. was asked to
describe her thoughts, feelings, emotions, perceptions, and experiences of
being a sister of a child with cancer. Furthermore, she was asked to
describe the experience as she remembered it best. Finally, J.S. was en-
couraged to describe the experience until she felt she had completely
described it. She was given no time frame in which to have the descrip-
tion completed. J.S. and her mother were asked to contact me when she
felt the written narrative was complete. Both understood that J.S. could
withdraw from the study at any time. The story was written over four
weeks in J.S.’s home.

DATA ANALYSIS

Analysis of the data, after the story was received from J.S., evaluated
the story line by line for recurring themes. The goal of the analysis
was to show and explain the lived experience of the participant as de-
scribed by Munhall (1994) and Karian, Jankowski, and Beal (1998). Fol-
lowing the analysis, the well sibling was contacted by telephone to verify
the information for validation, clarification, and correction. This also
served as an opportunity to provide feedback on the themes identified.
Other researchers have found this procedure to be beneficial when using
this form of research methodology (Karian, Jankowski, & Beal, 1998).

FINDINGS

Several themes evolved from the J.S.’s experience with childhood can-
cer: emotional intensity, increased empathy for others, personal growth,
need for support, and a desire to help others.

Emotional Intensity

Emotional intensity was the most recurring theme. J.S. described sev-
eral experiences that elicited feelings of fear, anger, hate, jealousy, and
isolation.
222 J. S. Murray

Our family life soon centered on the hospital. As C. became the focal
point in our lives, jealousy, anger, and confusion jumbled in my mind. I
wondered if our family would ever be the same.

I began to feel hatred for my sister. I often thought if I got sick, maybe I
too would receive presents and sympathy. My sister stood bathed in the
spotlight, and I’d been thrown into the corner. I resented her.

I thought everyone was totally insensitive to me. People would always ask
me how she was doing, never how I was doing. I was suffering just as
much as she was—not physically, but emotionally.

Previous researchers have shown that siblings experience anxiety, feel-

ings of rejection, fear, and guilt during the childhood cancer experi-
ence (Binger et al., 1969; Cairns et al., 1979; Kramer, 1981; Murray,
1999b; Spinnetta, 1981).

Increased Empathy for Others

Increased empathy for others, the second theme, describes J.S.’s enhanced
understanding, feeling, and concern for others. This feeling of empathy
was for strangers as well as family members.

One day while visiting my sister, I saw this frail little girl standing on her
bed crying in pain. She cried a cry that broke my heart. I tried to hold in
my tears. I wanted just to go over and hug all her hurt away.
My father didn’t want to feel the gnawing ache over C. being sick, so he
shoved all his feelings underneath. I could tell he was hurting as much as
me, but he supported us and gave us someone to look to for stability.

Havermans and Eiser (1994) have studied this response to the illness
experience. These researchers interviewed 21 siblings about their experi-
ence when a brother or sister was diagnosed with cancer. Results showed
that some siblings reported some positive effects as a consequence of the
illness. These siblings had become more empathetic toward others and
valued life more than they previously had.

Personal Growth

Another common theme was that of personal growth and maturation.

J.S. felt that the childhood cancer experience made her grow up quicker
and gave her greater responsibilities within the family.
One Sibling’s Perspective 223

C.’s cancer changed our lives. I would have to become a stronger, more
independent person. I quickly learned that I had to do more for myself. I
couldn’t depend on my mother for everything like I did before.
I learned something valuable from watching life struggle against death. I
learned that peace is everywhere, even in the time of deepest trouble.
Sometimes I may really have to look for it, whether it be the smile on a
sleeping child or the basic comfort that it rains on the good and the bad.
There is good and bad to everything in life.

Although the long-term effects of the childhood cancer on siblings

have not been studied, researchers have found that this experience causes
an increase in parental expectations of siblings and enhanced personal
growth and maturation (Kramer, 1981; Murray, 1999b).

Need for Support

J.S. described many situations in which emotional and informational

support was needed and how it helped her with the childhood cancer
experience. Pediatric nurses have long recognized the importance of sup-
port for siblings, but few studies have researched siblings’ perceptions of
what is helpful in adjusting to the childhood cancer experience (Murray,
1999a).

At the hospital, the older children would go into the vacant waiting room
to talk about our burning feelings. These meetings were the very strength
and help I needed. There I could voice how I felt with people who under-
stood, unlike my friends who didn’t understand what I was going through.
The meetings helped me by allowing me to help others while helping
myself.
I felt helpless because I did not fully understanding what was going on. I
knew so little about leukemia. I thought everyone who had it died. So I
began to collect information, books, and pamphlets.

In 1995, a descriptive study by Murray investigated nursing interven-

tions used by pediatric oncology nurses to provide social support
to siblings of children with cancer. Results indicated that the two
most frequently used nursing interventions were aimed at meeting both
the need for emotional and for informational support. However, re-
search is needed to investigate sibling perceptions of helpful inter-
ventions aimed at enhancing adaptation to the childhood cancer ex-
perience.
224 J. S. Murray

Desire to Help Others

The desire to help others understand the cancer experience was also
expressed by J.S. when describing her experience with childhood cancer.
Slowly the healing powers of time took their course, for the reality of the
change of our new life sunk in. I wanted to educate others. I wanted to
use my knowledge to help people in my life who were going through the
same thing I was.
In the beginning, my feelings were just for me and I rarely, if ever, shared
them with outsiders—people who didn’t know what was going on with
cancer, people whose lives hadn’t been shattered like mine. I felt outsiders
didn’t understand, but now I try to let them in and help them understand
what it’s like to have someone in your family with cancer.

It was clear that J.S. felt very strongly about giving back to others
by sharing her experience as she had been helped during this stressful
event in her life.

DISCUSSION

The themes identified by the participant embodied the adjustment diffi-

culties reported in the literature on sibling adjustment to the childhood
cancer experience (Murray, 1999a). The stress of the childhood cancer
experience led to emotional intensity, increased empathy for others, per-
sonal growth, a need for support, and finally a desire to help others. The
increase in emotions experienced was the most predominant theme for
J.S. Also important was a deeper sensitivity and empathy not only for the
child with cancer, but also for the parents and others experiencing the
same situation. Other positive effects of the childhood cancer experience
included enhanced personal maturation and growth and a desire to help
others with similar experiences. A review of the literature (Murray, 1999a)
indicated no other qualitative, phenomenological studies were done with
this population. Although a number of studies have examined the psycho-
social issues of being a sibling of a child with cancer, for the most part
they used a quantitative approach and documented and supported the
negative outcomes. The themes resulting from this study were closely
supported by Iles (1979) and Kramer (1981) who found positive conse-
quences associated with the childhood cancer experience: increased sen-
sitivity and empathy for parents and others, respect for the ill child,
enhanced personal maturation, and increased appreciation for life. This
study was unique in its approach and method of studying the lived expe-
rience of a sibling of a child with cancer.
One Sibling’s Perspective 225

LIMITATIONS AND RECOMMENDATIONS

FOR FUTURE RESEARCH

The sample size of this study is its primary limitation. Using one sibling’s
perspective limits the generalizing of the findings to all siblings of chil-
dren with cancer. Studying the significance of the childhood cancer expe-
rience for siblings is in its infancy, with this study as one of the begin-
ning stages in the research process. Future research should use the quali-
tative research methods with other siblings of children with cancer. In
addition, purposeful sampling of siblings of children with other forms of
cancer, as well as well children from ethnically and culturally diverse
backgrounds, would allow for the transferability of research findings across
cultures and disease processes.
In addition, research should focus on what siblings perceive to be
helpful interventions in dealing with the childhood cancer experience.
Furthermore, implementation of nursing interventions to support sib-
lings should not be used on the basis of solitary studies. Rather, interven-
tions should be evaluated and implemented based on findings that have
been replicated clearly in the research literature (Murray, 1995).

NURSING IMPLICATIONS

Understanding the effects of the childhood cancer experience on sib-

lings, and interventions aimed at moderating them, involves a number of
variables that will only be fully comprehended with further research into
sibling adaptation (Murray, 1999a). How the phenomenon of childhood
cancer affects siblings will expand the knowledge base of pediatric nurses
working with this population. As a result of this study, it is hoped that
nurses will gain insight and understanding from siblings of children with
cancer. As more is learned about the effects of the childhood cancer
experience on the family system, pediatric nurses are gaining an increased
awareness that just as with children with cancer, a comprehensive ap-
proach to sibling intervention is needed.

CONCLUSION

This sibling’s lived experience with childhood cancer has shown the
effects of this event on one child. The themes of emotional intensity,
increased empathy for others, personal growth, need for support, and
desire to help others were derived from the sibling’s narrative. Her ex-
perience provides health care professionals with an insight to take into
clinical practice when working with siblings of children with cancer. The
phenomenological approach to qualitative research is an important
226 J. S. Murray

research methodology to understand the lived experience of siblings of

children with cancer. This means of studying the effects of childhood
cancer on siblings could be instrumental in formulating a supportive care
approach to this group.

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