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.

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