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Cancer Nurs. Author manuscript; available in PMC 2013 September 01.
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Published in final edited form as:
Cancer Nurs. 2012 September ; 35(5): 347–354. doi:10.1097/NCC.0b013e3182365646.
Changes in Siblings after the Death of a Child from Cancer
Terrah L. Foster, PhD, RN, CPNP
Vanderbilt University, Nashville, TN
Mary Jo Gilmer, PhD, MBA, RN, FAAN
Vanderbilt University, Nashville, TN
Kathryn Vannatta, PhD
The Research Institute at Nationwide Children's Hospital
Maru Barrera, PhD
Hospital for Sick Children
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Betty Davies, RN, PhD, FAAN
University of California San Francisco
Mary S. Dietrich, PhD
Vanderbilt University, Nashville, TN
Diane L. Fairclough, DrPH
University of Colorado Health Sciences Center
Cynthia A. Gerhardt, PhD
The Research Institute at Nationwide Children's Hospital
Abstract
Background—Few studies have examined changes in siblings after the death of a brother or
sister, particularly from mother, father, and sibling perspectives within the first year post-death.
Objective—This descriptive study identified and assessed the frequency of changes in siblings
after a child's death from cancer.
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Methods—Participants were recruited from cancer registries at three hospitals in the U.S. and
Canada 3–12 months after the child's death. Thirty-six mothers, 24 fathers, and 39 siblings from
40 families were included. Semi-structured interviews using open-ended questions were conducted
with each parent and sibling separately in the home. Content analysis identified emerging themes,
and McNemar tests compared frequencies between each paired set of reports (sibling vs. mother,
sibling vs. father, mother vs. father).
Results—Sixty-nine percent of participants reported personal changes in siblings (e.g., changes
in personality, school work, goals/life perspective, activities/interests). Forty-seven percent noted
changes in siblings' relationships with family members and peers. Only 21% of participants
reported no changes attributed to the death. Comparisons of frequencies across informants were
not significant.
Correspondence: Terrah L. Foster, PhD, RN, CPNP, Vanderbilt University School of Nursing, 461 21st Avenue South, 409
Godchaux Hall, Nashville, TN 37240 terrah.L.foster@vanderbilt.edu).
Conflicts of interest: No authors have any other conflicts of interest to disclose.
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Conclusions—Most siblings experienced changes in multiple areas of their lives after the death
of a brother or sister to cancer. Some changes reflected siblings that were positively adapting to
the death, while other changes reflected difficulties.
Implications for practice—Our findings offer guidance to improve aftercare for bereaved
siblings and their families. Additional research is needed to further delineate the needs of bereaved
siblings and to develop strategies to promote adaptation to loss.
Almost 80% of individuals grow up with a sibling.1 Unfortunately, nearly 60 000 children
under the age of 20 die each year in the United States and Canada,2,3 leaving behind an
estimated 480 000 grieving siblings in the past decade. The sibling relationship is a unique,
multifaceted, often lifelong bond4–6 that is important to childhood socialization and
development.5, 7–8 Thus, the death of a brother or sister can have a profound impact on
surviving siblings.9
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While children and adolescents manage changes attributed to normal development, bereaved
siblings are simultaneously challenged with stressors associated with the death of a brother
or sister. According to the Dual Process Model,10 the death can result in siblings alternating
between positive and negative aspects of dealing with loss itself and secondary concurrent
changes. For some siblings, the death can result in difficulties, while others may experience
growth opportunities. Bereaved siblings may have internalizing and externalizing
problems.11–14 They have reported feeling guilty, anxious, and depressed,14–16 and parents
have noted similar problems in their children, including anxiety, nightmares, and posttraumatic stress symptoms.17, 18 On the other hand, resilient outcomes have included greater
maturity, acquiring a new life philosophy, and becoming more compassionate.19–21
Bereaved siblings may also experience changes in social functioning and relationships.
Compared to normative samples, bereaved siblings have been reported to have significantly
lower social competence and higher social withdrawal scores within two years postdeath.11, 22 Siblings may feel estranged from peers, and ordinary peer activities may seem
less important, further isolating them from friends.19, 23, 24 They may receive limited
support and communication from parents who are focused on their own grief,25 and some
children may feel protective of and responsible for their grieving parents.12, 19 Others
experience closer family relationships12, 26 or describe school, friends, and activities as a
“place of refuge.”14
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Previous studies of bereaved siblings have used quantitative11, 13, 21 or qualitative
approaches,12, 14, 27–29 but few have included both methodse.g.,19 which could enrich our
understanding of both challenges and growth. Studies have occurred 2 months to 7 years
post-death,12–14, 21, 27, 28 but seldom within a year. Sibling outcomes have been examined
from parent >perspectives30, 31 or self-reports,12, 14, 28, 32–34 but mothers, fathers, and
siblings are rarely included in the same study.19, 35 This is critical to understanding
bereavement within the family context and its impact on siblings' grief experience.
Moreover, studies pertaining to sibling bereavement have included various causes of
childhood death, including sudden unexpected death,11,17,18,32 suicide,19 and still born
death,31, yet little research has examined sibling bereavement related to children with
cancer.14,24,26 The purpose of this study was to: (a) examine bereaved parents' perceptions
of changes in siblings after the death of a brother or sister to cancer, (b) assess siblings'
views of changes in themselves, and (c) compare sibling and parent reports.
Methods
This research was part of a multi-site longitudinal study of families following the death of a
child from cancer. In the larger study, data collection involved visits to bereaved siblings'
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schools and homes in the first year after the death, followed by another home visit in the
second year post-death. This paper includes cross-sectional, qualitative data collected from a
subset of families at the first home visit.
Participants
Of 60 eligible and located bereaved families, 41 (68%) participated in the home visit.
Qualitative data were missing from one family due to a tape recording malfunction.
Participants (N = 99) included 36 mothers, 24 fathers, and 39 siblings. Mothers averaged
40.50 years of age (SD = 7.35), and 78% (n = 28) were White. Fathers averaged 43.88 years
of age (SD = 7.75), and 83% (n = 20) were White. Parent educational level averaged 14.52
years (SD = 2.24). Average family socioeconomic status (M = 44.20, SD = 25.10), using the
revised Duncan,36 reflected clerical, sales, and service occupations. Siblings were primarily
female (64%, n = 25), White (72%, n = 28), and on average 12.28 years of age (SD = 2.64).
Deceased children were mostly male (54%, n = 22) and averaged 12 years of age (SD =
5.27) with an average of 2.73 years (SD = 2.34) from diagnosis to death. Data were
collected 6 to 19 months (M = 10.68, SD = 3.48) post-death.
Procedures and Measures
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Institutional Review Board approval was obtained at the three participating children's
hospitals in the U.S. and Canada. Families were sent an introduction letter from the deceased
child's attending physician and were recruited via phone 3 to12 months post-death. Eligible
families (a) had a bereaved sibling 8–17 years old, (b) were fluent in English, and (c) lived
within 100 miles of the hospital. Adopted, half-siblings, and step-siblings were eligible if
they had regular, ongoing contact with the child who died. Home assessments took place as
soon as they could be arranged with families. Informed consent and assent were obtained
from each parent and child, respectively. For the larger study, research staff administered a
series of questionnaires and semi-structured interviews that were audio-taped for
transcription and coding. For this report, individual interviews included an open-ended
question developed by the research team. Siblings were asked:
We have talked to many kids/teens who tell us that they have experienced changes
as a result of their brother/sister's death; others have identified few changes. Some
tell us about negative changes, and some have talked about changes in a positive
direction. How would you say you have changed since your brother/sister's death?
(If needed, probes included: Personally; in your daily activities; how you get along
with family, how you get along with friends/classmates; at school/work; how do
you see yourself as the same or different from your friends?)
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Parents were asked:
How has (the sibling) changed? (If needed, probes included: what do you see as
different about your child - mood, behavior, relationships; at home, at school; with
their family, with friends?)
Analysis
Four researchers independently analyzed data from the open-ended questions through
qualitative content analysis.37, 38 For complete details, refer to Foster et al.39 In short,
researchers repeatedly read the transcripts to gain a holistic sense of the data. Similar ideas
were clustered from 15 transcripts, and preliminary categories emerged. The researchers
reviewed the initial coding scheme, extracted quotes, and regularly discussed the rationale
for emerging categories. Data were re-examined by recoding original transcripts and making
mutually agreed upon category changes. Fifteen new transcripts were added to the coding
scheme, and new codes were adopted when data did not fit into an existing category.
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Researchers repeated this process until they reached consensus, and no new categories
emerged (i.e., saturation). Sibling transcripts were coded first, followed by parent
transcripts.
For the quantitative analysis, two researchers independently counted frequencies of the
qualitative themes to compare reports from mothers, fathers, and siblings. Kappa values
ranged from 0.92 to 1.00 across themes. McNemar tests examined differences in the
frequency of sibling changes between each pair of reports (sibling vs. mother, sibling vs.
father, mother vs. father). A Bonferroni-corrected alpha of .017 (.05/3) was used to assess
statistical significance within each theme.
Findings
Three major themes emerged regarding changes in bereaved siblings: (a) personal changes,
(b) changes in relationships, and (c) no changes attributed to the death. Frequencies are in
Table 1. Comparisons across informants using McNemar tests were not significant. Findings
will be presented through descriptions and frequencies of themes reported by mothers,
fathers, and siblings.
Personal Changes
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Sixty-eight percent of all participants (n = 68) perceived that siblings experienced personal
changes since the death including changes in the sibling's: (a) personality, (b) attitude
toward and interest in school work, (c) goals and life perspective, and (d) activities and
interests.
Changes in personality—Sixty-one percent (n = 22) of mothers, 54% (n = 13) of
fathers, and 44% (n = 17) of siblings reported changes in the sibling's personality. These
included increased maturity, as well as becoming withdrawn, compassionate, sad, angry, or
fearful of another death.
Bereaved siblings developed a greater maturity, as reported by 22% (n = 8) of mothers, 15%
(n = 6) of siblings, and one father. Siblings said, “I've grown up.” A mother said, “She's [14year-old] more mature in some ways than other kids that are her age because of what she's
seen.” Another mother expressed, “He's [13-year-old] coming more into his own… much
more of a voice… more focused.”
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Some siblings were more withdrawn since the death. Only 5% (n = 2) of siblings, but 22%
(n = 8) of mothers and 21% (n = 5) of fathers reported this. An 18-year-old sibling said, “A
lot of my friends tell me that I've changed attitude-wise…I'm normally that go-lucky happy
person, but lately I've just kinda kept to myself and quiet…” One father reported that his 13year-old is now “a little more withdrawn. She doesn't like to talk about her feelings.” A
mother shared that her 10-year-old “just prefers to be alone and up in his room.”
Only 8% (n = 3) of mothers and 8% (n = 2) of fathers reported that siblings were more
compassionate, but 23% (n = 9) of siblings reported this. A 17-year-old female sibling said,
“I've been more aware of people's feelings and more caring towards them, and I'd say more
forgiving, giving more second chances.” A father perceived that the death changed his
daughter's attitude: “She's [11-year-old] very sympathetic towards…kids at school who are
disabled… I think it's made her realize that not every child is the same…she likes to help
others.” One mother shared that her 11-year-old daughter “has changed where she is more
loving and caring. She is willing to [do] just about anything it takes to make you happy.”
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Fourteen percent (n = 5) of mothers, 13% (n = 3) of fathers, and 8% (n = 3) of siblings
reported that the sibling's demeanor reflected an overall sadness since the death, such as one
sibling who said that there were “more things to be sad about.” One father expressed: “I
think it was a sobering thing for (15-year-old bereaved sibling)…the reality of (deceased
child) passing away really hit her hard. She did a lot of crying. Disturbed her a lot. She's
gotten better.” A mother shared how her 14-year-old daughter is “not as sweet as she used to
be…you can even see sadness in her face.”
Several parents (19% of mothers, n = 7; 13% of fathers, n = 3) and one sibling reported that
bereaved siblings experienced anger. A father said his 16-year-old son was “Angrier. More
given to rage. More willing to express it, the anger. Not in a healthy way…. For the first
four to five months, there wasn't a lot of joy. There are bits of joy now, but there's a habit of
anger.” Similarly, a mother described, “He's [11-year-old] had a couple of little
explosions…a couple of holes in his wall….” Another mother said that her 11-year-old
“rebels and lashes out against losing her sister.”
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Two mothers and one sibling described the sibling's fear of experiencing another death in
the family. One mother said that “he [8-year-old] feels like something may happen.”
Another mom expressed: “Experiencing one loss, she's [13-year-old] afraid to do another
one. When I got sick here a little while back…it scared her.” A 14-year-old sibling said, “I
was scared that if one of my parents died, I'd be by myself.”
Changes in attitude toward and interest in school work—Twenty-eight percent (n
= 10) of mothers, 13% (n = 3) of fathers, and 26% (n = 10) of siblings reported changes in
school work. A 14-year-old said, “I'm doing way better in school than I used to cause…I'm
not worrying about spending time with her.” One mother reported that her 13-year-old
changed schools: “I think it has been better. He's been really happy out there.” Siblings also
experienced negative changes at school. A 14-year-old said that it was “harder for me to
concentrate.” A father noted that his 11-year-old “decreased a little bit in his schooling.” A
mother said there were “phases where school doesn't really mean anything to her [12-yearold].”
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Changes in goals and life perspective—Eight percent (n = 3) of mothers, 17% (n = 4)
of fathers, and 21% (n = 8) of siblings commented on changes in the sibling's priorities.
Siblings said they did “not take things for granted” now and were “more appreciative of
life.” One mother stated, “She [14-year-old] has seen life and death. And a lot of the little
stuff is frivolous to her…”A father commented, “She's [17-year-old] always had sort of an
interest in biology… She might have gravitated a little bit more towards things that might be
more medically related to cancer.”
Eight percent (n = 3) of mothers, 8% (n = 2) of fathers, and 10% (n = 4) of siblings said that
siblings seemed to be motivated by the memory of the deceased brother or sister. One 13year-old boy shared: “I try to kind of be more like him [deceased child]. He always worked
really hard…. I work harder at sports and school and everything now.” A father said,
“Schoolwise it's almost as if he [16-year-old] tried to impress his [deceased] sister. …He
was a terrible student up until high school. It's like he just woke up. All of a sudden he's
doing really well.” A mother shared that a 12-year-old sibling “really wants to be like
(deceased child).”
Changes in activities/interests—The death also changed the sibling's activities or
interests as reported by six parents (8% of mothers, 4% of fathers) and three siblings (8%).
One 13-year-old said, “I've been getting into more activities…. Going out more because I
don't have to stay in and take care of him [deceased sibling] anymore.” A mother reported
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that her 10-year-old daughter “does stuff now that she would have never tried before… She's
going to play softball this year, and she's never wanted to do anything like that before.”
Conversely, a few parents noted a loss of interest in activities: “She [14-year-old] is good in
art, but then because (deceased child) passed away, she [bereaved sibling] lost that…. She's
not interested in doing things, and she even told me that.”
Changes in Relationships
Forty-seven percent (n = 47) of participants reported changes in the sibling's relationships.
These included: (a) peer relationships, (b) family relationships, and (c) the bereaved sibling's
role within the family.
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Changes in peer relationships—Fourteen percent (n = 5) of mothers, 13% (n = 3) of
fathers, and 33% (n = 13) of siblings discussed changes in the dynamics of the sibling's
friendships, both in terms of how siblings interacted with their existing friends and the
deceased child's friends, as well as friendships that were lost/gained or became weaker/
stronger. One mother shared: “She's [12-year-old] more blunt with them [friends]. She tells
them how she feels.” A 13-year-old sibling said, “I couldn't relate to the kids at school as
much…. Friendships sort of changed. I looked at everything everybody said a lot
differently.” Participants also discussed siblings losing friends, such as this 14-year-old:
“Friends, they don't know what to say…. They don't pay attention to you anymore, and you
get new friends.” A father noted: “For awhile there she [17-year-old] became…engaged [in]
(deceased child)'s circle of friends…. Then at a certain point…she backed off of that group
of friends and migrated to her own friends.” Other siblings grew closer to peers after the
death: “I've [17-year-old girl] become closer with my best friend. You know, I lost my
sister, so I need another girl who I can be close to.”
Changes in family relationships—Nineteen percent of mothers (n = 7), 17% of fathers
(n = 4), and 23% (n = 9) of siblings reported that the sibling's relationships with family
members were closer. In particular, siblings shared: “We talk more,” and they receive “more
attention from mom and dad.” A father reported that his 16-year-old daughter does better
now: “We pay attention to each other…we have more time with the family than before.”
One mother shared that her 9-year-old is “more of a mommy's boy now.”
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On the other hand, one mother (3%), one father (4%), and three siblings (8%) believed
family members had become more distant, such as one 16-year-old who said, “My parents
split up.” A 13-year-old sibling reflected on his mom: “She comes home, and she's tired. On
the days that she's off work, she's got to go to…school and this exercise thing… If you get
her to working a little bit, then she doesn't think about it [death of the child] a lot.” One
mother said that her 9-year-old was “more distant with his father.”
Changes in sibling's role in the family—With the absence of the deceased child,
siblings were adjusting to a new role in the family as the oldest, youngest, or only child.
Twenty-five percent (n = 9) of mothers, 8% (n = 2) of fathers, and 18% (n = 7) of siblings
discussed this. A 13-year-old sibling shared that it's “awkward, all of a sudden being the
only child.” A 10-year-old perceived, “The family is short one.” A father said, “He's [11year-old] learning to become a big brother.” A mother noted, “He [8-year-old bereaved
sibling] used to play with him [deceased child], and now he plays alone.”
No Changes
Seventeen percent (n = 6) of mothers, 13% (n = 3) of fathers, and 15% (n = 6) of siblings did
not report any changes in the sibling. A 10-year-old sibling said, “I don't have any
changes… I do usual things, go on the computer, play with my friends.” One mother
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reported, “I don't think [17-year-old] has changed a great deal. We think she's still the same
outgoing girl… She seems to have a really good perspective…very balanced about it….”
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Eleven percent (n = 4) of mothers and 8% (n = 2) of fathers perceived that sibling changes
were part of normal childhood development. One father said, “I haven't really noticed any
negative changes that I associate with (deceased child)'s passing. Coincide more with him
(13-year-old bereaved sibling) being a teenager…changes in life…a phase, a stage…” A
mother felt similarly: “I don't know if she's depressed. …being 14-years-old, you're going to
be going through some fluctuating moods anyway. So, it's hard to relate what is 14-years-old
and what is 14-years-old and seeing your sister suffer. …I can attribute it to that
[development], and not everything that's involved in our family is because of (deceased
child)'s illness.”
Discussion
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Limited research has examined the frequency and nature of changes experienced by siblings
after the death of a brother or sister from cancer. This study used multiple informants and
qualitative and quantitative analyses to identify and assess the frequency of changes in
siblings on average within the first year of a child's death. The majority of family members
perceived that siblings did experience changes after the death including personal changes
and changes in relationships. This is consistent with studies which also found that bereaved
siblings experienced a range of positive and negative personal and relationship
changes.11–13, 19–21, 27–29, 40 However, change was not universal.
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Participants most frequently reported personal changes in bereaved siblings, particularly
personality changes. Differences, while statistically non-significant, were noted across
informants. Siblings were more likely to report positive personal changes that may reflect
growth and adaptation; parents were more likely to report negative changes that may reflect
a continuum of normal sadness and longing for the deceased or difficulties adapting to the
death. Greater maturity was the most common personal change according to siblings, and
more than twice as many siblings relative to moms or dads reported changes in compassion
and life priorities. Siblings less often than mothers or fathers reported negative changes such
as being sad, angry, withdrawn, or fearful of experiencing another death. However, within
the subdomains of personality changes, we found fairly equal positive changes (e.g.,
maturity, compassion), and negative changes (e.g., sad, withdrawn, anger). The majority of
participants reported either positive or negative changes in siblings' personality, rather than
both positive and negative. Consistent with previous literature, some siblings reported or
were reported to develop a greater maturity and more prosocial behaviors,12 while others
reported negative consequences such as guilt, anger, anxiety, sadness, and longing for the
deceased,e.g., 12, 14, 28 The range of personality changes reported about bereaved siblings
represents a new finding which may reflect diversity in individual personalities and past
experiences. More work is needed to elucidate the sources of these differences.
A new finding emerged indicating that bereaved siblings were motivated by their deceased
brothers or sisters. This finding was unique, as siblings' motivation seemed to stem from an
internal desire to be more like their deceased brothers or sisters. In our previous work, we
found a similar theme in which bereaved parents and siblings reported being inspired to live
life differently because of the deceased child; however, the inspiration originated in the
advice given by the ill children prior to their deaths;39 we also found that some bereaved
parents and siblings participated in activities to memorialize or honor the legacies of
deceased children. These reports tended to reflect strategies to continue bonds with the
deceased child.41 More work is needed to explore how or why some bereaved siblings seem
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to be motivated by their deceased siblings and possible associations with grief and
adjustment.
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About half of participants cited changes in sibling relationships, most often with peers.
Siblings reported these changes more frequently than parents. Thus, parents may not be as
attuned to the effects on important social relationships relative to observable changes in the
sibling's personality or emotional well-being. Some siblings developed new relationships
and stronger bonds with current friends, while others ended relationships or felt more distant
from friends. This is consistent with previous literature suggesting that bereaved siblings
experience gradual changes in their social network over time.19 Some siblings experience
feelings of social isolation and withdrawal,23, 33 while others experience the reemergence of
friendships after the death.14
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This is the first study we could identify to examine changes in siblings after the death of a
brother or sister to cancer from three different perspectives: mothers, fathers and siblings.
This relatively uncommon approach allowed us to address commonalities of family
perspectives as well as unique contributions. In general, there was consistency across
informants regarding perceived changes in the siblings. While none of our quantitative
comparisons among mothers, fathers, or siblings were statistically significant, we had
limited power for these analyses. The actual percentage of themes suggests both similarities
and differences across informants that warrant further investigation. Our findings suggest
that the assessment of sibling grief responses should involve direct communication not only
with parents, but also with siblings. Discrepancies between parent proxy and child report of
internalizing behavior have been reported previously with pediatric brain tumor survivors,43
other clinical samples,44 and healthy children.45 Obtaining child self-report and parent proxy
reports provides different perspectives important for making clinical treatment decisions and
measuring research outcomes.46, 47
Some participants noted feeling closer to family members after the death, while reports of
more distant family relationships were rare. This could be explained in part by bereaved
siblings and parents sharing the intimate experience of the death and therefore leaning on
each other for support. Mothers have been most commonly identified as helpful to bereaved
siblings in previous work.12 Siblings have also been reportedly closer to family members in
part from feeling protective of and responsible for caring for their grieving parents,12, 19 yet
we did not find evidence of this in our study.
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Our study also supports the importance of collecting and reporting qualitative frequency
data. Many qualitative studiese.g., 39 use verbal counting48 and terms such as some, many, or
most to represent numbers of respondents linked to thematic codes. Such terms are not welldefined49 and can be easily misinterpreted. Counting and use of numbers in qualitative work
is essential to the analytic process and recognition of patterns.48 Frequency data can be
reported as the presence of a theme for each participant, as in our study, or as the intensity of
a theme (e.g., number of times each code is present50). Frequency counts can provide vital
information for comparing qualitative categories or reports from multiple informants and
better inform other researchers conducting mixed research synthesis.49
Limitations
Our findings should be considered in the context of several limitations. Findings may not
generalize to all bereaved siblings as our participants were primarily White, Englishspeaking, and included families whose children died of cancer. Data were cross-sectional,
and reports of sibling changes may not persist over time. The interview question was at the
end of a long assessment (e.g., 2 to 2.5 hours), and participants may have been less talkative
due to fatigue. Parental anxiety related to the wellness of the surviving child may have
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impacted parent reports. Despite these limitations, this study addressed a gap in the literature
by examining changes in siblings as reported by bereaved mothers, fathers, and siblings
relatively soon after the death. Other strengths included multiple data collection sites, good
recruitment rates that minimized ascertainment bias, and both qualitative and quantitative
analyses.
Implications for Future Research
More research is needed to further our understanding of sibling grief in response to
childhood cancer death. Future research could include longitudinal studies to examine
quantitative and qualitative reports of changes in siblings over time, as well as how parents'
own grief and adjustment affects mother and father proxy report. Studies examining
predictors of change (e.g., demographic factors, characteristics of the illness and death, or
other individual and family factors) in bereaved siblings are necessary to inform the design
and evaluation of interventions to promote healthy adaptation.
Implications for Practice
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Nurses and other clinicians may encourage families to discuss possible changes that siblings
can experience after the death of a sibling. Parents may worry about potential effects on
healthy siblings very early in the cancer illness trajectory and through bereavement, if the
child with cancer dies. Families may benefit from knowing the positive nature of siblings'
reports and by the hope offered by siblings who adapt to the death of a brother or sister.
Families may also benefit from knowing that the death of a brother or sister is profound for
some siblings. Some parents may anticipate that their bereaved children will experience
changes and become concerned if changes seem unapparent. Nurses and other clinicians can
provide reassurance that change may not be universal to all bereaved siblings. Families can
gain a sense of normalcy knowing that the range of positive and negative responses is part of
the human condition.
In conclusion, findings from this study contribute to our current knowledge of sibling
bereavement and suggest directions for further research. To love is to grieve – and sibling
grief can be manifested in many ways. Provider education on the range of sibling grief
responses could equip nurses and clinicians to better prepare families for and guide families
during bereavement. More work is needed to continue advancing the science of sibling
bereavement related to cancer so that nurses can provide optimal care to children with
cancer and their families, from the time of diagnosis, to cure or end of life, and thereafter.
NIH-PA Author Manuscript
Acknowledgments
The authors would like to thank the families who generously participated in this work. This research was supported
by a grant from the National Institutes of Health (R01 CA98217) to Cynthia Gerhardt.
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Table 1
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Frequency of Participants Reporting Changes in Bereaved Siblings
All Participants (N=99)
Siblings (n=39)
Moms (n=36)
Dads (n=24)
Personal changes
68 (69%)
27 (69%)
25 (69%)
16 (67%)
Personality
52 (53%)
17 (44%)
22 (61%)
13 (54%)
Maturity
15 (15%)
6 (15%)
8 (22%)
1 (4%)
Withdrawn
15 (15%)
2 (5%)
8 (22%)
5 (21%)
Compassion
14 (14%)
9 (23%)
3 (8%)
2 (8%)
Sadness
11 (11%)
3 (8%)
5 (14%)
3 (13%)
Anger
11 (11%)
1 (3%)
7 (19%)
3 (13%)
3 (3%)
1 (3%)
2 (6%)
0 (0%)
School work
23 (23%)
10 (26%)
10 (28%)
3 (13%)
Goals/ life perspective
21 (21%)
10 (26%)
5 (14%)
6 (25%)
Fear of another death
Life priorities
15 (15%)
8 (21%)
3 (8%)
4 (17%)
9 (9%)
4 (10%)
3 (8%)
2 (8%)
7 (7%)
3 (8%)
3 (8%)
1 (4%)
Changes in relationships
47 (47%)
22 (56%)
17 (47%)
8 (33%)
Peers
21 (21%)
13 (33%)
5 (14%)
3 (13%)
Family relationships closer
20 (20%)
9 (23%)
7 (19%)
4 (17%)
Sibling role change
18 (18%)
7 (18%)
9 (25%)
2 (8%)
Family relationships more distant
5 (5%)
3 (8%)
1 (3%)
1 (4%)
No changes attributed to death
21 (21%)
6 (15%)
10 (28%)
5 (21%)
No changes
15 (15%)
6 (15%)
6 (17%)
3 (13%)
6 (6%)
0 (0%)
4 (11%)
2 (8%)
Motivated by deceased sib
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Activities/interests
Changes attributed to development
a
a
Differences were not statistically significant using a Bonferroni-corrected alpha, p > .017
NIH-PA Author Manuscript
Cancer Nurs. Author manuscript; available in PMC 2013 September 01.