Siblings of children with cancer need support to ameliorate the challenges they encounter; however, little is known about what types and sources of support exist for siblings.
1. Introduction
A pediatric cancer diagnosis causes disruptions within the family including shifting of roles, finances, and resources. The focus on the needs of the diagnosed child often leaves siblings feeling anxious, alone, and distracted
[1][2][1,2]. Siblings may experience poor psychosocial adjustment, including poor school functioning, cancer-related traumatic stress, and poorer quality of life
[3][4][5][3,4,5]. Due to distress and challenges with adjustment among siblings of children with cancer
[4][6][4,6], supportive care, including providing education and psychological supports, for siblings is recommended as a standard of care in pediatric oncology
[7].
Social support is broadly defined as the provision of assistance, comfort, or resources to individuals that alleviate stress and assist in coping
[8]. The stress-buffering hypothesis of social support
[9] has been extensively explored and suggests that social support offers resources and promotes coping to buffer stress. Social support is well established as a key factor in health outcomes and adjustment in children and adolescents
[10][11][12][13][10,11,12,13].
Few studies have examined siblings’ perspectives of their social support or associations between support and adjustment
[14][15][14,15]. A recent scoping review suggested that social support is indeed helpful to siblings; however, the most important sources and types of helpful support for siblings of children with cancer remain unclear
[16].
2. Social Support of Siblings of Children with Cancer
Previous work has identified that siblings of children with cancer are at risk for poor adaptation, difficulties in school, and altered relationships with members of their social networks
[4][6][4,6]. Barriers to supporting siblings have also been identified
[17][18][29,30], and structured support may not be available to many siblings. COVID-19 has further limited access to supportive services
[19][31]. Notably, no siblings in
the researcheour
s study mentioned receiving support or information from the oncology team or hospital for themselves, and when formal services from a therapist were obtained for siblings, it was reported as having occurred as a result of a parent or teacher concern and support.
In this study,
thwe
researchers aimed to advance
the researchersour understanding of social support among siblings and to fill a gap in the literature by characterizing sibling social support networks and identifying the sources and types of support they find helpful.
The researchersWe identified that existing, informal supports were most meaningful and helpful to siblings during their brother or sisters’ cancer and that this support most often came from sources closest to them. Siblings identified specific examples of support across a variety of social support domains. The examples of support received from their networks were relatively typical for adolescents
[20][21][32,33], contributed to the siblings’ sense of security, and made them feel cared for during the stressful experience of cancer within the family. These findings are consistent with other research demonstrating siblings' challenges
[15] and their desire to be seen and involved when a brother or sister has cancer
[1][2][1,2].
In this study,
thwe
researchers aalso aimed to identify through narratives how the sources and types of support given to siblings alleviate the “hardest things” they have encountered since their brother or sister’s cancer diagnosis. Sibling social networks were primarily made up of family members and close friends, highlighting the importance of support within close relationships. Unfortunately, lack of awareness of sibling support needs within the family is a recognized barrier to sibling support
[18][30]. Based on
the our
esearchers findings, siblings seem to benefit from meaningful connections formed when others regularly check in on their well-being and allow them space to express their specific needs. In turn, as others learn of siblings’ needs, they may be better able to provide congruent support or seek out appropriate professional support when needed. Supports such as providing distraction activities, humor, and understanding of their experience help siblings in small ways to meet the challenges they face being a sibling of a child with cancer. In addition, while most support came from parents, others such as extended family or community can support siblings (and parents) by providing these types of support.
Siblings in
the our
esearchers study expressed being acutely aware of the challenges that their diagnosed brother or sister and parents faced and the implications of this on themselves. Siblings also indicated that their parents and family members’ well-being was important and contributed to their own sense of emotional security and coping. Previous research has documented similar findings noting that pre-existing family challenges, inadequate resources, or poor parental coping can contribute to poor adjustment to cancer in all family members including siblings
[22][23][34,35]. Clinicians can routinely assess for these psychosocial issues within families, stratify risk, and improve health equity using tools like the Psychosocial Assessment Tool
[24][36].
Important sibling supports were often related to being seen, involved, or part of the family.
The Our
esearchers overarching theme of being “involved” may be more about siblings leveraging their own power to create or enhance cohesion and connection between themselves and their important supporters, rather than a desire for increased responsibility at home or in the care of the child with cancer. These findings align with family systems theory
[25][37] and suggest that family focused interventions may be the most impactful for siblings because positive changes within their relationships with their most important social network members—family members—may enhance intervention effects.
Clinicians treating children with cancer can use
the our
esearchers findings to offer additional evidence and guidance to parents about keeping adolescent siblings involved, supported, and connected as they navigate the cancer trajectory.
The researchersOur findings point to helpful support coming from siblings’ existing and informal social networks, available to siblings in their day-to-day activities, outside of structured hospital and community-based interventions. Previous research has demonstrated that siblings of children with other chronic illness experience similar emotional and psychological challenges
[26][27][38,39] to those of children with cancer.
The Our
esearchers reported findings should be compared to those reported by siblings of other childhood illnesses and may be applicable and useful in supporting other sibling groups.
This is among the first studies to report on the social networks of siblings, and
the reseaour
chers findings should be interpreted with caution. While participant selection was purposive, the sample was relatively small and under-represents the racial and ethnic diversity that is prevalent in the general population of adolescents in the United States
[28][40]. In addition, many children who participated were recruited from SuperSibs, a program that recognizes the needs of siblings of children with cancer. These families may be more aware and in tune with sibling support needs. Finally,
the our
esearchers sample was entirely composed of two parent families; the known challenges for single parent families
[29][41] were not integrated into
the our
esearchers findings.
The researchersOur findings may in fact represent a “best case”, as participants often expressed having adequate supportive resources.
It is important to note that siblings with supportive resources may still have unmet social support needs if the support they receive is mismatched to their specific challenges. These mismatches of support and need may play a role in poor or ineffective adjustment to the cancer experience. Furthermore, while emotional support was the most frequently reported type of support, it may not be the most needed; rather it may be the most easily offered or cognitively accessible to this age group. More work is needed to determine the specific support needs of individual siblings and how to leverage the supports available to them to promote their healthy adjustment. Future studies could undertake a more traditional social network analysis examining how support, cohesion, or the heterogeneity of their network influences sibling outcomes. Lastly, our research noted some differences in reports of appraisal support by gender, and other research suggests that cultural influences play a role in what supports are desired
[30][42]. Additionally, this generation is the most diverse generation in US history
[28][40] (race, ethnicity, orientation and gender identity), and that should be accounted for in research. Future research efforts should further examine and confirm if specific types of support are more relevant to specific demographic groups or socioeconomic aspects of families.