Background: The use of parental donors in pediatric haploidentical
hematopoietic cell transplantation is increasing, but research on the
psychosocial impact of parental donation is currently limited. We
conducted a retrospective, qualitative study to explore parental
perceptions of the donation process and the impact of being a donor (or
non-donor) on parents’ adjustment and coping with their child’s
transplant experience. Methods: Parents/caregivers of children who
underwent transplantation with a parental donor or a matched unrelated
donor (N = 136) participated in interviews and completed an open-ended
questionnaire. Both bereaved parents and parents of survivors were
surveyed. Results: Six themes were identified in the data: level of
understanding and satisfaction; perception of choice; preparation for
donation; perceptions of donation and infusion; benefit-finding; and
psychological impact of transplantation. Most parents were satisfied
with the information they received and reported a good understanding of
transplantation and donation procedures. Parents were divided on
perspectives of choice, but their responses reflect that the necessity
of saving their child’s life does not allow for choice. They described
considerable effort to prepare for transplantation, physically,
emotionally, and logistically. Parents acknowledged the psychological
impact while identifying positive outcomes that resulted from their
child’s transplant journey. Conclusions: Results highlight the unique
experiences of parental donors and non-donors from the anticipation
phase to the completion of their child’s transplant. Additionally,
findings inform supportive care guidance by highlighting the need to
assess parental donors’ emotional functioning, provide support
post-donation, and conduct bereavement follow-up.
“Giving the gift of life twice”: Understanding the lived experiences of parent donors and nondonors in pediatric haploidentical hematopoietic cell transplantation