Unmet needs of siblings of pediatric stem cell transplant recipients.
OBJECTIVE
In 2010, the Bioethics Committee of the American Academy of Pediatrics issued recommendations that pediatric hematopoietic stem cell donors should have an independent advocate. Formulating appropriate guidelines is hindered by the lack of prospective empirical evidence from families about the experience of siblings during typing and donation. Our aim was to provide these data.


METHODS
Families with a child scheduled to undergo hematopoietic stem cell transplant were recruited. All family members, including children aged 9 to 22 years, were eligible. Qualitative interviews were conducted within 3 time periods: pretransplant, 6 to 8, and 9 to 11 months posttransplant. Quantitative scales assessing decision satisfaction and regret were administered at time 2.


RESULTS
Thirty-three families were interviewed. Of the 119 family members, 76% perceived there was no choice in the decision to HLA-type siblings; 77% perceived no choice in sibling donation; 86% had no concerns about typing other than needle sticks; and 64% had no concerns about donation. Common concerns raised were dislike of needle sticks (19%), stress before typing results (14%), and fear of donation (15%). Posttransplantation, 33% of donors wished they had been given more information; 56% of donors stated they benefited from donation. Only 1 donor expressed regret posttransplant.


CONCLUSIONS
Most family members did not view sibling typing and donation as a choice, were positive about the experience, and did not express regrets. We recommend education for all siblings before typing, comprehensive education for the donor by a health care provider pretransplant, and systematic donor follow-up after transplantation.
Emory School of Medicine, Atlanta, Georgia; Department of Hematology and Medical Oncology, Winship Cancer Institute, Atlanta, Georgia; rpentz@emory.edu.
Rebecca D
RD
Pentz
Department of Pediatrics, The Children's Hospital of Philadelphia and Perelman School of Medicine, University of Pennsylvania, Philadelphia, Pennsylvania;
Melissa A
MA
Alderfer
Departments of Hematology and Oncology, and Transplant Program, Alberta Children's Hospital, Calgary, Alberta, Canada;
Wendy
W
Pelletier
Department of Hematology/Oncology, Children's Mercy Hospital, Kansas City, Missouri;
Kristin
K
Stegenga
Emory School of Medicine, Atlanta, Georgia; Department of Pediatrics, Children's Healthcare of Atlanta, Aflac Cancer and Blood Disorders Center, Atlanta, Georgia;
Ann E
AE
Haight
Department of Hematology and Medical Oncology, Winship Cancer Institute, Atlanta, Georgia;
Kristopher A
KA
Hendershot
Department of Hematology and Medical Oncology, Winship Cancer Institute, Atlanta, Georgia;
Margie
M
Dixon
Department of Biostatistics and Informatics, University of Colorado Denver, Denver, Colorado; and.
Diane
D
Fairclough
Department of Nursing Research and Quality Outcomes, Children's National Health Systems, Washington, District of Columbia.
Pamela
P
Hinds
D000223:Adaptation, Psychological; D000293:Adolescent; D002648:Child; D004992:Ethics, Medical; D005239:Fear; D005260:Female; D005500:Follow-Up Studies; D006301:Health Services Needs and Demand; D018380:Hematopoietic Stem Cell Transplantation / Q000941:ethics / Q000523:psychology*; D006650:Histocompatibility Testing / Q000523:psychology; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000523:psychology; D007406:Interview, Psychological; D008297:Male; D016602:Needlestick Injuries / Q000523:psychology; D010344:Patient Advocacy / Q000941:ethics; D035781:Siblings / Q000523:psychology*; D013315:Stress, Psychological / Q000150:complications; D014019:Tissue Donors / Q000193:education / Q000941:ethics / Q000523:psychology*; D055815:Young Adult
donor advocates; ethics; guidelines; hematopoietic stem cell transplant; sibling donors