Changes in Siblings over Time after the Death of a Brother or Sister to Cancer

Abstract

Background

Limited research has examined the impact of a child’s death from cancer on siblings. Even less is known about how these siblings change over time.

Objective

This study compared changes in siblings 1 (T1) and 2 (T2) years after the death of a brother or sister to cancer based on bereaved parent and sibling interviews.

Interventions/Methods

Participants across 3 institutions represented 27 families and included bereaved mothers (n=21), fathers (n=15), and siblings (n=26) ranging from 8 to 17 years of age. Participants completed semi-structured interviews. Content analysis identified emerging themes and included frequency counts of participant responses. McNemar tests examined differences in the frequency of responses between T1 and T2 data.

Results

Participants reported similar types of changes in bereaved siblings at both time points, including changes in sibling relationships, life perspectives, their personal lives, and school performance. A new theme of “openness” emerged at T2. Frequencies of responses differed according to mother, father, or sibling informant. Overall, participants less frequently reported changes at T2 versus T1. Compared to findings in the first year, participants reported greater sibling maturity at follow-up.

Conclusion

Overall changes in bereaved siblings continued over 2 years with less frequency over time, with the exception of increases in maturity and openness.

Implications for Practice

Providers can educate parents regarding impact of death of a brother or sister over time. Nurses can foster open communication in surviving grieving siblings and parents as potential protective factors in families going through their grief.

In the United States, about 16,000 new cancer diagnoses are estimated annually for children up to 19 years of age.¹ Despite significant medical advances, nearly 2,000 of those children will die from the disease.¹ The death of a child not only affects parent caregivers, but also the entire family.² Research suggests that experiencing the death of a sibling is actually quite common, affecting between 5 and 8% of children with one or more siblings in the United States.³ With the U.S. Census Data noting that 78% of American children live with at least 1 sibling and 69% live with two parents,⁴ we can estimate that childhood cancer deaths impact about 4,680 parents and siblings living in the immediate home, and multitudes of additional loved ones and friends each year.

Siblings may be uniquely affected by the death of a brother or sister because of the distinct and powerful nature of the sibling relationship.^{2, 5, 6} Rising numbers of blended families (e.g., with step siblings or half siblings) and diverse family living arrangements in the US are on the rise, resulting in many siblings who have brothers or sister of various ages and wide age gaps;⁷ however, siblings often spend significant time together and some spend more time with each other than they do with parents, teachers, peers, or alone. Siblings are friends, competitors, and confidantes.⁸ Brothers and sisters influence one another’s development and play key roles in family structure and dynamics. Thus, the death of a sibling is a substantial stressor with both short- and long-term consequences, potentially positive and negative, for surviving brothers and sisters.^{6, 9, 10}

Negative effects of experiencing the death of a sibling are numerous. Bereaved siblings often deal with their grief alone as they do not want to upset their grieving parents, contributing to the risk for complicated grief and symptoms of post-traumatic stress disorder.¹¹ The impact of sibling grief can be long-term, with adult siblings reporting effects up to 9 years later,^{12, 13} Estimates of bereaved siblings falling short 0.23 to 0.52 years in schooling can impact subsequent socioeconomic outcomes such as earnings, social assistance, and teen pregnancy rates.³ In a study of siblings bereaved for approximately 12 years, almost all reported that the death still affected them, and half reported the experience currently impacted their educational and career goals.¹⁴

Researchers have examined changes specific to siblings after the death of a brother or sister from cancer based on parent perspectives^{2, 15} and self-reports from siblings.^{14, 16–19} Reported changes have included anxiety,¹⁴ depression,¹⁴ risky behaviors,^{2, 14} and decreased communication with family members.^{2, 20} Differences in changes over time have been noted in a few studies. For example, Rosenberg and colleaugues¹⁴ noted that changes in siblings (e.g., anxiety, depression, substance abuse) occurred during the first year post-death and then returned back to baseline. In another study, both stability and change was noted for siblings at 6 and 18 months post-death.²

With the exception of Martinson’s¹⁸ work, longitudinal studies that focus on changes in bereaved siblings over time are generally lacking, as is the number of reports that include simultaneous parent and sibling reports.⁹ In addition, in many studies, the duration of time since death widely varies, ranging from 7 months²¹ to 25 years,¹² and most include adolescents and young adults (e.g., 10 years of age and up).^{12, 14, 19, 22} Only a few studies have included younger children (e.g., pre-school to adolescents).^{21, 23} Thus, the aim of this study was to address these methodological issues and compare changes in bereaved siblings (ages 8–17) based on parent and sibling perspectives in the first and second years after the death of a child to cancer.

Methods

This study was part of a larger mixed-methods multi-site longitudinal study that examined parent and sibling coping and adjustment after a child’s death from cancer. The research team included clinical psychology and nursing researchers with extensive clinical and research experience related to pediatric oncology and palliative care. The larger study included school visits and home assessments generally in the first (T1) and second (T2) years post-death. This paper reports on the analysis of data about changes in siblings collected via interviews with bereaved parents and siblings participating in both T1⁹ and T2 home visits.

Participants

Of 60 eligible bereaved families, 41 (68%) participated in T1 home visits. Twenty-seven bereaved families participated in both T1 and T2 home visits. Of those 27 families, participants included mothers (n = 21), fathers (n =15), and siblings (n = 26). Mothers averaged 40.4 (SD=8.0) years of age, and 81% (n =17) were White. Fathers averaged 44.1 (SD=8.9) years of age, and 73% (n =11) were White. Parents had completed 14.5 (SD=1.9) years of education on average. Siblings had a mean age of 12.3 (SD=2.5) years and were primarily female (69% n=18), and white (73% n=19). Data at T1 were collected an average of 11.1 months (SD=3.5) post-death, while data at T2 were collected an average of 23.8 months (SD=5.0) post-death.

Procedures and Measures

Following institutional review board approval, bereaved families were recruited from three children’s hospitals in the U.S. and Canada 3 to 12 months after their child’s death from cancer. Eligible families had a bereaved sibling ages 8 to 17 years, were English-speaking, and lived within 100 miles of the hospital. Adopted, half-siblings, and step siblings were eligible if they had regular ongoing contact with the ill child. In cases where families had more than 1 eligible sibling, one sibling (ages 8–17) was randomly selected to participate. Home assessments at 1 (T1) and 2 (T2) years post-death concluded with an interview with open-ended questions with parents and siblings in separate rooms selected for privacy. This paper reflects data collected from the interview questions related to changes in siblings after the death of a brother or sister. At T1, researchers asked siblings:

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?)

At T1, 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, or with their family, with friends?)

At T2, siblings were asked:

We’ve talked to other kids who tell us that they’ve experienced changes as a result of their brother or sister’s death, but others have identified few changes. Some tell us about negative changes, others tell us about changes in a more positive direction. We’d like to know how you’ve changed since the last time we were here about a year ago.

At T2, researchers asked parents:

How has (participating child) changed since the last time we were here? (If needed probes included; do you see anything different in mood, behavior, relationships with family, at school, and with friends?)

Analysis

Content analysis for T1 data was previously described and published.⁹ Researchers applied this same content analysis process to the T2 transcripts. Three researchers independently read transcripts from T2 participant interviews. They coded the first 15 transcripts to first determine if the T1 coding scheme fit the T2 data. The researchers determined the T1 coding scheme did fit the T2 data; thus, they continued to independently code the rest of the transcripts based on the T1 coding scheme and included frequency counts of changes reported by bereaved parents and siblings. Researchers coded whether each theme and subtheme was either present at least once or not present in each transcript (e.g., as opposed to counting the total number of times themes appeared in each transcript.) After independently coding all of the T2 data, the 3 researchers met to discuss coding discrepancies and reach consensus. McNemar tests compared the frequencies between T1 and T2 reports (α = .05).

Results

The 3 major themes that emerged from participant reports at T1⁹ also characterized T2 data and included: (a) personal changes, (b) changes in relationships and (c) no changes. These themes and subthemes were described in detail with exemplar quotes reflecting T1 in our previous paper T1.⁹ Themes and subthemes (Table 1) are described below with exemplar quotes from T2.

Table 1.

Themes and Subthemes that Emerged from Participant Reports at T1 and T2

Theme/Subtheme	Definition
PERSONAL CHANGES
Personality:	Changes in personal characteristics of bereaved siblings.
Maturity	A quality of being mature or emotionally advanced.
Withdrawn	Quiet; stays to themself or not wanting to talk with others.
Compassion	Concern or sympathy for others.
Sadness	Depressed or unhappy.
Anger	Hostile or annoyed.
Fear of another death	Afraid of experiencing another death in the family.
Opennessa	More open to communicate thoughts and feelings with others, including topics related to the deceased child.
School work	Changes in siblings’ attitudes toward and interest in school work.
Goals/life perspective:	Changes in siblings’ aspirations and general attitude about life.
Life priorities	Changes in the siblings’ priorities.
Motivated by deceased sibling	Motivated by the memory of the deceased brother or sister.
Activities/interests	Changes in siblings’ hobbies or extracurricular activities, things they like to do.
CHANGES IN RELATIONSHIPS
Peer changes	Changes in the dynamics of the siblings’ friendships, including friendships lost or gained.
Peer relationships closer	Friendships became stronger.
Family relationships closer	Relationships with family members became stronger.
Sibling role change	Sibling adjusting to a new role in the family as the oldest, youngest, or only child.
Family relationships more distant	Relationships with family members became weaker.
NO CHANGES
No changes attributed to death	No reports of any changes.
Changes attributed to development	Changes perceived as part of normal childhood development.

^aThe new theme of openness emerged at T2

Personal Changes

Personal changes included changes in siblings’ personalities, including increased maturity, becoming more withdrawn, compassionate, sad, angry, or fearful of another death. Eleven mothers, 4 fathers, and 10 siblings reported that bereaved siblings developed a greater maturity. A mother shared, “She’s starting to learn new things…how to realize what life is all about. She’s growing now.” A father said, “She’s continuing to grow up.” A sibling reported, “I’m a teenager, but I don’t have that whole angsty depressed thing. I mean I don’t complain about my life and worry about things and I don’t think I am ugly and sad and unpopular and unloved like a lot of kids at my age do. And I don’t need constant reassurance about that. So I would say I am more comfortable with myself than a lot of my friends. And also how I look at things is more a big picture than small bits like they are worried about.”

Some bereaved siblings were more withdrawn since T1 as reported by 2 mothers and 1 father but no siblings. A mother said, “She’s become a little more quiet, to herself.” One mother, zero fathers, and 2 siblings said that bereaved siblings were more compassionate. A mother said, “I’ve seen positive things going on…trying to help others.” One sibling had been “doing more volunteer work since they died…trying to help others.”

Participants also reported negative changes since T1, such as an overall sadness or anger A mother reported, “She’ll be sad and cry that she misses [deceased child].” A father said, “…the dealing with the grief, and his reaction to strong emotion is anger. So the anger comes out, has come out more, much more vividly in the last year.” Only 1 participant, a sibling, reported maintaining the fear of experiencing another death.

Changes in attitudes toward and interests in schoolwork

Three mothers, zero fathers, and 7 siblings reported changes related to schoolwork. A mother said, “We put her in a private school…the second week she just cried, cried every day. Didn’t want to go.” A sibling said, “I’m doing better in my schoolwork because…I am not focusing all my time with [deceased child].”

Changes in goals and life perspectives

Since T1, participants continued reports of changes in bereaved siblings’ life priorities. A sibling shared, “I got a better outlook on life, and I learned to value more because it can easily be taken away from me.” One mothers, zero fathers, and 2 siblings reported that siblings were still motivated by the memory of their deceased sibling. A sibling said, “I’ve had some positive changes because she set a very good example for me. She was always encouraging me to do the right thing. And, I know that she’d want the best for me.”

Changes in activities and interests

An increase in or loss of interest in activities was reported by 3 fathers and 2 siblings. A father reported, “We see her getting more and more active in lots of things, with the work that she’s doing with her charity work, continues to expand and grow, so I think that’s been good.” Contrarily, another father perceived that his daughter showed a loss of interest in activities: “We don’t play games like we used to when (deceased child) was here and that’s one difference. (Deceased child) always wanted game night, we’d play games with him, you know, we really enjoyed it, and (bereaved sibling) would play, too. You know she just doesn’t bring it up too much.” A sibling said, “We used to like go on cruises and everything when (deceased child) was here, and we don’t anymore.”

Changes in relationships

Participants reported changes in sibling relationships since T1, including peer relationships, family relationships, and the bereaved siblings’ role within the family. Changes in siblings’ peer relationships included the changes in dynamics of siblings’ friendships and friendships that were lost/gained or became weaker/stronger. A father said, “The first year of loss, was for him, more of a cocooning, more of anger without focal points. Just anger. He started a little over a year ago, coming back to the interactive person that he always has been with his friends and support group…. ” Changes in family relationships included siblings’ relationships with family members becoming closer or more distant. A sibling said “It has brought us closer together, having my brother die, ‘cause it just showed us that we can lose each other really fast.” On the contrary, a mother said, “Her and her brother fight more.” A father said, “[Mother] ended up basically moving out of [sibling’s] life, and creating a new life away from him, and then still attempting to hook back in but not in a healthy way.” Participants also shared about changes in bereaved siblings’ roles within the family. A mother said, “He’s getting to where he’s living his life as him… He’s always stressed to my family, ‘I’m not [deceased child]. Quit comparing me.’…He’s more of his own person now.”. The final theme included participants reporting no changes attributed to the death of the child.

Additionally, a new personality subtheme of “openness” emerged at T2. Four (15%) siblings, 1 (5%) mother, and 1 (7%) father reported that bereaved siblings were more open to communicate their thoughts and feelings with others, including topics related to the deceased child. A mother said, “She’s a little more open about talking about (deceased child). Whereas before she didn’t want it discussed at all.” A father from another family reported, “The cocoon’s coming off.” Siblings shared, “More people know what is going on in my life, and I can tell more people” and “I grew out of my shell.” Another sibling said, “…I’m more open about it now…you don’t have to hold it in.”

Comparison of frequency counts over time and across informants

Tables 2, 3, and 4 compare frequency counts (e.g., the number of participants who reported themes/subthemes at any time during the interview) of changes between T1 and T2 data as reported by mothers, fathers, and siblings. Siblings more frequently reported changes in their maturity at 2 years (p = .039) compared to 1 year post-death, the only statistically significant change. Other categories for sibling change were not significantly different between T1 and T2. Siblings more often reported sadness, openness, life priorities, and no changes at T2 compared to T1. Mothers and fathers reported more peer changes for siblings and more distant family relationships at T2 compared to T1. Fathers more frequently reported changes in sibling activities and interests, closer peer relationships, sibling role changes, and no changes at T2 compared to T1. At T2, siblings most commonly reported changes in maturity, schoolwork, life priorities, and no changes. Both moms and dads most commonly reported changes in maturity, peer changes, and changes attributed to development at T2, while more dads than moms or siblings reported no changes.

Table 2.

Counts and Frequencies of Siblings (n = 26) who Reported Themes/Subthemes at T1 and T2

Themes and Subthemes	T1	T2
PERSONAL CHANGES
Personality:
Maturity	3 (12%)	10 (39%)a
Withdrawn	0 (0%)	0 (0%)
Compassion	6 (23%)	2 (8%)
Sadness	1 (4%)	2 (8%)
Anger	0 (0%)	0 (0%)
Fear of another death	1 (4%)	1 (4%)
Openness	n/a	4 (15%)
School work	7 (27%)	7 (27%)
Goals/life perspective:
Life priorities	5 (19%)	6 (23%)
Motivated by deceased sibling	4 (15%)	2 (8%)
Activities/interests	3 (12%)	2 (2%)
CHANGES IN RELATIONSHIPS
Peer changes	5 (19%)	5 (19%)
Peer relationships closer	4 (15%)	1 (4%)
Family relationships closer	6 (23%)	4 (15%)
Sibling role change	3 (12%)	2 (8%)
Family relationships more distant	2 (8%)	2 (8%)
NO CHANGES
No changes attributed to death	3 (12%)	6 (23%)
Changes attributed to development	0 (0%)	2 (8%)

^aMaturity T1 vs. T2, p=.039

Table 3.

Counts and Frequencies of Mothers (n = 21) who Reported Themes/Subthemes at T1 and T2

Themes and Subthemes	T1	T2
PERSONAL CHANGES
Personality:
Maturity	4 (19%)	11 (52%)
Withdrawn	3 (14%)	2 (10%)
Compassion	3 (14%)	1 (5%)
Sadness	4 (19%)	1 (5%)
Anger	3 (14%)	0 (0%)
Fear of another death	0 (0%)	0 (0%)
Openness	n/a	1 (5%)
School work	5 (24%)	3 (14%)
Goals/life perspective:
Life priorities	3 (14%)	3 (14%)
Motivated by deceased sibling	3 (14%)	1 (5%)
Activities/interests	3 (14%)	0 (0%)
CHANGES IN RELATIONSHIPS
Peer changes	0 (0%)	5 (24%)
Peer relationships closer	2 (10%)	0 (0%)
Family relationships closer	3 (14%)	1 (5%)
Sibling role change	4 (19%)	3 (14%)
Family relationships more distant	1 (5%)	3 (14%)
NO CHANGES
No changes attributed to death	4 (19%)	3 (14%)
Changes attributed to development	4 (19%)	5 (24%)

Table 4.

Counts and Frequencies of Fathers (n = 15) who Reported Themes/Subthemes at T1 and T2

Themes and Subthemes	T1	T2
PERSONAL CHANGES
Personality:
Maturity	0 (0%)	4 (27%)
Withdrawn	2 (13%)	1 (7%)
Compassion	2 (13%)	0 (0%)
Sadness	2 (13%)	0 (0%)
Anger	2 (13%)	1 (7%)
Fear of another death	0 (0%)	0 (0%)
Openness	n/a	1 (7%)
School work	3 (20%)	0 (0%)
Goals/life perspective:
Life priorities	3 (20%)	1 (7%)
Motivated by deceased sibling	2 (13%)	0 (0%)
Activities/interests	1 (7%)	3 (20%)
CHANGES IN RELATIONSHIPS
Peer changes	2 (13%)	5 (33%)
Peer relationships closer	0 (0%)	1 (7%)
Family relationships closer	3 (20%)	0 (0%)
Sibling role change	0 (0%)	1 (7%)
Family relationships more distant	0 (0%)	2 (13%)
NO CHANGES
No changes attributed to death	3 (20%)	4 (27%)
Changes attributed to development	1 (7%)	4 (27%)

Discussion

Researchers have seldom examined changes over time in school aged siblings of children who recently died from cancer. Little is known about how these siblings change over time based on both parent and self-reports. In this current analysis, we used qualitative content analysis and quantitative McNemar tests to examine similarities and differences between sibling changes reported by parents and siblings at one and two years post-death. We found many similarities between the findings from interviews one year apart, but some to a lesser degree. We identified a new theme related to greater openness in communication two years post-death compared to one year. Siblings were more likely to report greater maturity at follow-up (T2).

“Openness” emerged as a new theme at T2 based on reports from four siblings, one mother, and one father that we did not identify at T1. While this theme was based on a relatively small subgroup of participants, its importance warrants further consideration. Similarly in previous research, bereaved siblings were more open and communicative at 18 months post-death compared to 6 months.² Greater openness may be due to more open and honest communication occurring between siblings and others as they progress through their grief and re-establish relationships that may have been disrupted during the illness and death. Reports in the literature have strongly supported children’s and adolescents’ desires for openness and inclusion within the family.²⁴ For example, one study reported that bereaved siblings who were more open with family members had three times lower risk for anxiety compared to those who were less open.²⁵ While there is consensus in the literature regarding benefits of families taking and open and honest approach with grieving youth, Warnick²⁴ suggests that many families remain unaware of this information. More work is needed to determine how to facilitate openness earlier in the illness and grief trajectory.

Mothers, fathers, and siblings more frequently reported greater sibling maturity in the second year post-death compared to the first year. This change was statistically significant for siblings’ self-reports but not parent reports, highlighting differences in parent and sibling perspectives. Although previous work has similarly reported greater maturity in bereaved siblings,²⁶ normal development could also explain siblings’ increased maturity as they were approximately one year older. In contrast, Eilegard found lower levels of self-assessed personal maturity (p = 0.007) in bereaved siblings (19–33 years of age) two to nine years post-death compared to non-bereaved peers.¹⁷ Literature notes how developmental stages significantly impact grieving children.^{27, 28} Thus, differences in results may be due in part to variations in participant ages and time since death.

Although not statistically significant, reports of relationship changes were overall more negative at T2 compared to T1. With the exception of one father reporting closer sibling peer relationships at T2, participants less frequently reported closer peer and family relationships at 2 years post-death compared to year 1. While the frequency of sibling reports remained the same, parents more frequently reported distant family relationships at T2 compared to T1. This is somewhat counterintuitive to the greater openness noted (by 4 siblings and 2 parents) but could be explained in part by previous research that has noted decreased communication between parents and adolescents due to increasing communication with peers.^{2, 20} However, in our study, siblings and mothers more frequently reported closer peer relationships at T1 compared to T2. Some bereaved siblings feel lonely or isolated after experiencing a meaningful death and may have difficulties identifying with their peers.²⁸ More research is needed to better understand how the death of a brother or sister affects various aspects of relationships (e.g., communication, quality) for siblings over time.

Important to note is the large number of themes that received lower or no reports of change at T2. No moms reported changes in siblings’ anger, fear of death, activities or close peers at T2. Fathers did not report T2 changes in sibling compassion, sadness, fear of death, schoolwork, being motivated by the deceased, or closer family relationships. These results do not support consistency in sibling change across time but rather suggest that fewer sibling changes occurred in the second year compared to first year post-death. This was similar to Barrera’s study that noted parent reports of adjustment difficulties for bereaved siblings at 6 months post-death but not 18 months post-death.²

We acknowledge several limitations of our study. Findings are difficult to generalize as the majority of the participants were White, English-speaking, and limited to families of children who died from cancer. Only two-thirds of families that participated at T1 also participated at T2, decreasing our sample size. We also recognize that our quantitative analysis compared categories with small frequency counts, thus limiting interpretations that should be made from our McNemar test results. Member checking (e.g., validating analytic themes with participants) was not done and could have further strengthened study findings. However, this study is one of the few to compare changes in siblings after the death of a brother or sister over time, include multiple data collection sites, and use quantitative and qualitative methods.

Many bereaved parents and siblings are willing and want to participate in research.²⁹ Further research is needed to better understand the new theme of “openness” that emerged from our T2 data. Standardized measures assessing maturity and communication longitudinally could be used to compare differences in perceptions of maturity between bereaved siblings and non-bereaved siblings of children with cancer, as well as future work to better understand perceptions of maturity as a whole. Studies should also examine changes in bereaved siblings of non-cancer related illnesses to explore differences and similarities among deaths from other life-threatening illnesses. How siblings’ growth and development affects changes specific to bereavement over time should be determined. Specifically, based on our new findings suggesting that bereaved siblings experience change over time, future research to direct interventions aimed at helping children and families adapt over time to the death of a child to cancer is important; current interventions lacking in this area could miss potential opportunities to promote positive and minimize negative changes experienced by bereaved siblings.

Findings from this study advance knowledge of bereavement for siblings and family members deeply impacted by the death of a child from cancer and have significant practice implications. Providers, and most importantly oncology nurses, can help educate parents on the benefits of taking an open and honest approach with grieving youth, particularly considering the reference from Warnick²⁴ that many families remain unaware of this information. Since they are often the only healthcare providers a family sees during a child’s cancer treatment, oncology practitioners, and oncology nurses in particular, serve as main providers to theses families during the illness phase of a child with cancer. Siblings often accompany the family to treatments, visits during hospitalizations, and are present during a sibling’s death and bereavement. Thus, oncology health care providers are in tremendously unique roles to provide longitudinal, family-centered care along a continuum both during the treatment of a child with cancer and for the family during and after bereavement. Providers can proactively support siblings during treatment and following bereavement by communicating with and educating pediatricians, schools, clergy, and community counselors regarding the grief trajectory following bereavement for siblings. After bereavement, siblings are often lost to follow-up, yet their grief journey is just beginning. Unless alerted, pediatricians, educators, and counselors are not typically on the lookout for warning signs of the sibling grief process.

Unfortunately, there is a vast discrepancy among institutions in terms of supportive care services offered for families and siblings. Sweden, for example, includes “sibling supporters” in their cancer centers that focuses care to siblings of children with cancer.³⁰ Contrarily, many pediatric oncology centers struggle to provide age appropriate services to support family-centered emotional and spiritual well-being and do not have sibling support groups in place. Siblings are so often “lost” throughout the journey of their sibling’s cancer treatment. Parent caregivers and pediatric oncology healthcare providers are often so focused on the ill child during cancer treatment and then grieve so deeply during bereavement that it can become difficult to see changes over time in bereaved siblings. Thus, private and community mental health services are often utilized by families who recognize the importance of proactively supporting emotional health and well-being.

Open communication between health care providers in the community and the pediatric oncology team is very important, and many pediatricians continue to want to be “in the loop” regarding the patient and family throughout the treatment journey to provide the best continuum of care for the family going forward. An increased awareness for pediatric oncology providers as well as the larger community of the impact of a child’s death on the family members left behind, including the provision of sibling support groups and age appropriate bereavement groups, could lesson the emotional, physical, and financial burden that the most commonly reported problems have on a community. By proactively promoting the emotional health of the whole family who has experienced the death of a child to cancer, community providers can help provide wellness for the entire community.