Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): a qualitative study of their psychosocial experience.

Abstract

To examine the psychosocial impact of pediatric hematopoietic stem cell transplants (HSCTs) on sibling donors, particularly in unsuccessful HSCTs. Fifteen sibling HSCT donors, 8 who had participated in successful transplants, and 7 whose recipient sibling died, were interviewed (M age = 19.6 years at time of interviews, and 13.3 years at time of sibling's HSCT). Grounded theory methodology was used to derive themes from interviews. Siblings in the unsuccessful transplant group reported greater negative impact and feelings of guilt following the HSCT and were less likely to experience positive psychological effects. Both groups reported that informed consent involved "no choice" and that psychological aspects of the procedure outweighed physical aspects. Some themes differentiated sibling donors of successful and unsuccessful transplants, while others were common to both groups. All emergent themes reinforced the importance of providing sibling donors with developmentally appropriate, accurate information and long-term psychological support.