TY - JOUR
T1 - Assessing Early Supportive Care Needs among Son or Daughter Haploidentical Transplantation Donors
AU - Wagner-Johnston, Nina D.
AU - Hannum, Susan M.
AU - Heughan, Ja Alah Ai
AU - Abshire, Martha
AU - Wolff, Jennifer L.
AU - Yarkony, Kathryn
AU - Symons, Heather
AU - Jones, Richard J.
AU - Dy, Sydney M.
N1 - Publisher Copyright:
© 2020 American Society for Transplantation and Cellular Therapy
PY - 2020/11
Y1 - 2020/11
N2 - 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.
AB - 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.
KW - Haploidentical child donors
KW - Qualitative
KW - Supportive care
UR - http://www.scopus.com/inward/record.url?scp=85090154071&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85090154071&partnerID=8YFLogxK
U2 - 10.1016/j.bbmt.2020.08.005
DO - 10.1016/j.bbmt.2020.08.005
M3 - Article
C2 - 32781288
AN - SCOPUS:85090154071
SN - 1083-8791
VL - 26
SP - 2121
EP - 2126
JO - Biology of Blood and Marrow Transplantation
JF - Biology of Blood and Marrow Transplantation
IS - 11
ER -