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Decision-making, knowledge, and psychosocial outcomes in pediatric siblings identified to donate hematopoietic stem cells. J Psychosoc Oncol 2019 May-Jun;37(3):367-382

Date

10/30/2018

Pubmed ID

30372379

DOI

10.1080/07347332.2018.1489443

Scopus ID

2-s2.0-85055723241

Abstract

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.

Author List

Hoag J, Igler E, Karst J, Bingen K, Kupst MJ

Authors

Kristin M. Bingen PhD Professor in the Pediatrics department at Medical College of Wisconsin
Jennifer A. Hoag PhD Associate Professor in the Pediatrics department at Medical College of Wisconsin
Jeffrey S. Karst PhD Assistant Professor in the Pediatrics department at Medical College of Wisconsin




MESH terms used to index this publication - Major topics in bold

Adolescent
Child
Decision Making
Feasibility Studies
Female
Health Knowledge, Attitudes, Practice
Hematopoietic Stem Cells
Humans
Longitudinal Studies
Male
Prospective Studies
Qualitative Research
Siblings
Social Support
Tissue Donors
Young Adult
jenkins-FCD Prod-468 69a93cef3257f26b866d455c1d2b2d0f28382f14