Sibling Involvement in Childhood Cancer Treatment: Exploring Family Decision-Making Processes

Abstract

Objective: Siblings of youth with cancer face increased psychosocial risk. The psychosocial standards of care in pediatric oncology recommend siblings be involved in cancer treatment (i.e., visit patients during hospitalizations, receive developmentally appropriate information about cancer) to promote adjustment to cancer. However, siblings are frequently absent from treatment settings, and it is unclear how families determine siblings’ level of involvement in cancer treatment. This qualitative study aimed to characterize family decision-making regarding siblings’ involvement in cancer treatment. Methods: We conducted semi-structured qualitative interviews with 16 families (n = 22 siblings; n = 16 parents) of youth with cancer, querying siblings’ involvement in cancer treatment, families’ decision-making processes, and siblings’ levels of satisfaction with involvement. Data were transcribed, cleaned, systematically coded, and analyzed with Applied Thematic Analysis. Results: Parents often decided on sibling involvement based on competing considerations: the best interests of the child with cancer, sibling routines, logistics, and systemic barriers (e.g., scarcity of hospital-based supports). Siblings want to be included in decision-making processes regarding their involvement, which they describe helps them feel included and important. Conclusions: Providers can take active roles in facilitating communication within the family about siblings’ needs and treatment involvement preferences. Potential avenues for improvement include hospital-based sibling supports and healthcare providers’ relationships with families.

Implications for Impact Statement

Siblings describe that inclusion in family decisions regarding siblings’ involvement in cancer treatment contributes to positive treatment experiences. Providers can actively facilitate family-wide communication by advocating for sibling psychosocial needs.