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“Giving the gift of life twice”: Understanding the lived experiences of parent donors and non-donors in pediatric haploidentical hematopoietic cell transplantation
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  • Megan Schaefer,
  • Vanessa Aguilera,
  • Kendra Parris,
  • Alanna Long,
  • Brandon Triplett,
  • Sean Phipps
Megan Schaefer
St Jude Children's Research Hospital
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Vanessa Aguilera
St Jude Children's Research Hospital
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Kendra Parris
St Jude Children's Research Hospital
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Alanna Long
St. Jude
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Brandon Triplett
St. Jude Children's Research Hospital
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Sean Phipps
St. Jude Children's Research Hospital
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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.
03 Sep 2021Submission Checks Completed
03 Sep 2021Assigned to Editor
03 Sep 2021Submitted to Pediatric Blood & Cancer
08 Sep 2021Reviewer(s) Assigned
30 Sep 2021Review(s) Completed, Editorial Evaluation Pending
01 Oct 2021Editorial Decision: Revise Minor
28 Oct 20211st Revision Received
28 Oct 2021Submission Checks Completed
28 Oct 2021Assigned to Editor
29 Oct 2021Review(s) Completed, Editorial Evaluation Pending
29 Oct 2021Editorial Decision: Accept