Supporting Siblings Through the Allogeneic Hematopoietic Cell Transplant Process: The Perspectives of Minor and Young Adult Siblings of Successful Transplant Recipients

Allogeneic hematopoietic cell transplantation (AHCT) remains an arduous medical therapy that challenges the physical and psychological reserves of the family unit at all stages of the process. Few studies have focused on the perspectives of healthy siblings regarding the types of support needed as they journey across the AHCT trajectory. This IRB-approved qualitative study explored the minor/young adult siblings’ experiences of the AHSCT experience, specifically the types of support they would recommend to other siblings going through this experience. A retrospective interview approach was used to capture the perspectives of 12 siblings of successful pediatric matched sibling donor transplants at our institution between January 1999 and September 2009.  All 12 participants had been HLA tested, with 8 serving as matched sibling donors. Median age at the time of the AHCT was 12 years (yrs) (range, 2-23 yrs) and at the time of the interview was 16 yrs (range, 10-30 yrs). The median time between donation and the interview was 6 yrs (range, 2-10 yrs). A grounded theory approach was used to analyze and interpret transcribed interview data. Semi-structured private interviews, demographic data, and field notes were the primary sources of data. Seven themes emerged: (a) being included in the health care “family”, (b) being involved with the ill sibling, (c) being prepared for each step of the process, (d) meeting others who have been through the experience, (e) receiving reassurance and hope, (f) drawing on the support of parents/family after the procedure, and (g) talking to others about their experiences. The stories of these participants supported that the ill sibling, the family, and the health care team all play an important role in supporting them across the transplant trajectory. Interventions must be designed to focus on the unique physical, emotional and social needs of siblings to help them make sense of the transplant process. Age-appropriate educational materials will provide youth with accurate information as well as a way to help them ask questions and express emotions. Finally, providing professional support that extends beyond the transplant itself is essential for helping them piece together the meaning of the transplant and related events for their lives.