Growth in the face of overwhelming pressure: A narrative review of sibling donor experiences in pediatric hematopoietic stem cell transplant

Abstract

Sibling donation in pediatric hematopoietic stem cell transplant (HSCT) can be emotionally distressing for children, but may simultaneously evoke positive emotions, and has the potential to facilitate personal growth. We conducted a narrative review of sibling donor experiences, which included an analysis of psychosocial distress and post-traumatic growth (PTG). We searched the following databases: MEDLINE, CINAHL, PsycInfo, and SCOPUS. Search concepts used to develop key terms included HSCT, siblings, children, and psychosocial outcomes. Specific inclusion criteria included a) research articles published in English in peer-reviewed journals until September 2020, and b) reported trauma symptoms and PTG characteristics of sibling donation experiences. Four themes were identified: fear and anxiety related to HLA testing, overwhelming pressure to donate, guilt and blame when the ill child died, as well as emotional and physical isolation following donation. Sibling responses also included evidence of PTG, articulated as a deepened appreciation for life, closer relationships with the ill child and other family members, increased personal strength, and spiritual growth. These results highlight a critical need for future research approaches that further empower sibling donor voices, such as those found in participatory, arts-based methodologies.