“Giving the gift of life twice”: Understanding the lived experiences of parent donors and non-donors in pediatric haploidentical hematopoietic cell transplantation

Abstract

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.

Parents’ experiences of living with a child with cancer undergoing hematopoietic stem cell transplantation: a qualitative content analysis study

“…In line with these findings, in a qualitative study involving parents from the anticipation stage to the completion of their child's HSCT, participants consistently reported numerous positive outcomes despite facing significant difficulties. These benefits encompassed increased spirituality, gaining a new perspective on life, strengthening parent-child relationships, a greater appreciation for life, and a desire to help families whose children will undergo this process in the future (Schaefer et al, 2022). In another qualitative study, it was identified that parents of children receiving HSCT developed a desire to help others, felt empathy toward others, established stronger relationships with their spouses, family members, and acquaintances, and acquired newfound personal strength to endure life's hardships (Beckmann et al, 2021).…”