An Unheard Voice: The Perspectives of Siblings of Solid Organ Transplant Recipients.

Abstract

Background: Solid organ transplantation requires complex and ongoing medical management that impacts the family system. However, the experiences of siblings of transplant recipients are not well described. Therefore, the purpose of this study was to elucidate the perspectives of siblings of pediatric kidney and liver transplant recipients.

Methods: Siblings (ages 12-17 years) of kidney and liver transplant recipients completed a semi-structured interview (Via Zoom) and demographic information. The interview data were analyzed using inductive content analysis.

Results: Twelve adolescents (9 males, 2 females, 1 non-binary; M = 15.25 Years, SD = 2.13) completed a virtual interview. Four major themes emerged describing the transplant experience: (1) Transplant changes the family system: Impact on family relationships, dynamics, and cohesiveness, (2) Transplant affects social-emotional development and adjustment, (3) new meaning assigned to family and increased commitment to the health of sibling, and (4) growth from the transplant experience as a way to help others.

Conclusions: These findings affirm that the transplant event is distressing and impacts the sibling, their relationships, and family functioning in the moment and for years afterward. Opportunities exist to raise healthcare providers' awareness of providing care through a family lens, which can positively impact the patient and the family. These findings are an initial step toward developing interventions that incorporate siblings of transplant recipients in healthcare interactions and create a more family-inclusive model of care in the transplant setting.