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Published on: September 6, 2017
Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors
Nina D Wagner-Johnston1, Susan M Hannum2, JaAlah-Ai Heughan2
1Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, Maryland.
Insights
Children donating stem cells for parents often feel obligated, regardless of family dynamics. Most are satisfied, but improved education and emotional support are needed for donors.
Area of Science:
- Medicine
- Hematology
- Transplantation
Background:
- Children increasingly serve as stem cell donors for parents undergoing blood and marrow stem cell transplant.
- The influence of family functioning on donor decision-making and the specific support needs of haploidentical donor children remain underexplored.
Purpose of the Study:
- To explore children's perspectives on the stem cell donation experience for their parents.
- To identify unmet needs and the impact of family functioning on the donation decision and experience.
Main Methods:
- Qualitative research design utilizing 15 semistructured telephone interviews.
- Participants were adult children who donated stem cells for a parent.
- Interviews covered the donation trajectory from screening to post-transplant follow-up.
Main Results:
- Major themes included perception of choice, the act of giving back, donation burdens, anticipated parental health benefits, and impact on the parent-child relationship.
- Most participants reported high family functioning, though some strain was noted.
- Family functioning seldom influenced the decision to donate; a sense of obligation was prevalent.
- Donors expressed high satisfaction with their decision and the ability to help their parent.
Conclusions:
- Children donating stem cells for parents often act out of obligation, with family functioning playing a minor role in the decision.
- Despite burdens, donors are generally satisfied, highlighting the importance of the 'act of giving back'.
- Healthcare teams should enhance donor education on screening delays and recipient complications, and provide crucial emotional support post-donation.
Abstract:
Increasingly, adolescent, young adult, and adult children are relied upon as donors for their parents undergoing blood and marrow stem cell transplant. How family functioning impacts donors' decision making and whether haploidentical donor children have unique supportive care needs is unknown. In this qualitative research study, we conducted 15 semistructured telephone interviews among individuals who underwent blood or marrow stem cell donation for their parent. Interviews explored donors' perspectives of the transplant experience across the trajectory from screening through early post-transplant follow-up and elicited unmet needs. Major themes included: (1) perception of choice, (2) act of giving back, (3) burdens of donation, (4) anticipated health benefit to parent, and (5) impact of donation on parent/child relationship. The majority of participants described high family functioning, but strain was also evident. Family functioning rarely was reported as affecting the decision to donate, with all donors expressing a sense of obligation. Participants were overwhelmingly satisfied with their decision and the ability to give back to their parent. Suggestions for the health care team to improve the donation experience focused on increased education about potential delays in screening, better description of possible complications for recipients, and provision of emotional support following donation.
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