Decision-making, knowledge, and psychosocial outcomes in pediatric siblings identified to donate hematopoietic stem cells

• Published in: Journal of psychosocial oncology 2019-05, Vol.37 (3), p.367-382
• Main Authors: Hoag, Jennifer, Igler, Eva, Karst, Jeffrey, Bingen, Kristin, Kupst, Mary Jo
• Format: Article
• Language: English
• Subjects: Adolescent; Alternative approaches; BMT; Caregivers; Child; Consciousness; Decision Making; donor; Emotional distress; Feasibility Studies; Female; Health Knowledge, Attitudes, Practice; Hematopoietic Stem Cells; HSCT; Humans; Longitudinal Studies; Male; pediatric; Pediatrics; Prospective Studies; Psychological Distress; Qualitative Research; sibling; Siblings; Siblings - psychology; Social Support; stem cell; Tissue Donors - psychology; Tissue Donors - statistics & numerical data; Young Adult
• ISSN: 0734-7332; 1540-7586
• DOI: 10.1080/07347332.2018.1489443

Purpose: To (a) describe the decision-making experience and psychosocial outcome of sibling hematopoietic stem cell (HSC) donors, and (b) to determine the feasibility of completing a prospective and longitudinal assessment of HSC sibling donors at a single institution. Design: A mixed-methods approach was utilized. Sample and methods: 12 potential siblings HSC donors aged 10-21 years completed various psychological measures and participated in semi-structured interviews at three time points in the donation experience: pre-donation, within 1 week after the harvest procedure, and six months post-donation. Caregivers also completed parent-proxy measures. Findings: Qualitative analysis indicated donors want to make their own decision about donation but may not be given the option or may feel that there is no choice given their limited awareness of alternative options. Donors felt well prepared for the donation procedure but demonstrated a poor understanding of possible recipient outcomes. A minority of donors endorsed emotional distress prior to and after donation; however, this was not linked to recipient health. Forty percent of donors felt that they had inadequate support following their donation. Small sample size restricted quantitative data analysis. Conclusions and implications: Utilizing a donor advocate offers opportunity to work with donors to encourage decision-making tied to ideals rather obligation, increase education about possible recipient outcomes, and offer support at key times, such as when a recipient dies. Future research should include prospective multi-site studies.