TY - JOUR
T1 - Navigating decisional conflict as a family when facing the decision of stem cell transplant for a child or adolescent with sickle cell disease
AU - Schulz, Ginny Lynn
AU - Kelly, Katherine Patterson
AU - Holtmann, Megan
AU - Armer, Jane Marie
N1 - Funding Information:
The first author conducted this research while a doctoral candidate at the University of Missouri Sinclair School of Nursing and was supported by the Doctoral Degree Scholarship in Cancer Nursing ( 127291-DSCN-15-079-01-SCN and 130681-DSCNR-17-090-03-SCN ) from the American Cancer Society . This project was also supported by grant number R24HS022140 from the Agency for Healthcare Research and Quality . The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality. The authors would also like to thank the patients and families for their participation and inspiration.
Publisher Copyright:
© 2020 Elsevier B.V.
PY - 2021/5
Y1 - 2021/5
N2 - Objective: Patients with sickle cell disease (SCD) face unpredictable disease, with stem cell transplant being a curative treatment option with risks. The aim of this study was to describe the level and source of decisional conflict in families of children/adolescents with SCD facing a transplant decision. Methods: A multiple-case study approach described decisional conflict in various SCD severity/donor risk decisional contexts. Cases included parents, child/adolescent with SCD, and sibling donor. The level and source of conflict was measured via O'Connor's Decisional Conflict Scale and analyzed using pattern-matching and cross-case synthesis. In-depth descriptions of conflict sources were obtained through thematic analysis of observation and interview data. Results: Among 11 participants in four cases (i.e. family units) decisional conflict was not unique not to the decisional context. Conflict levels represented a level that can be linked with feeling unsure and decisional delay. The theme, ‘navigating decisional conflict together’, described how family units discussed uncertainties. Conclusion: Varying levels and sources of decisional conflict exist in pediatric patients with SCD and their families considering transplant. Practice Implications: In our cases, decisional conflict and the transplant decision occurred at the family-level. Clinicians should encourage all family members to participate in discussions concerning transplant.
AB - Objective: Patients with sickle cell disease (SCD) face unpredictable disease, with stem cell transplant being a curative treatment option with risks. The aim of this study was to describe the level and source of decisional conflict in families of children/adolescents with SCD facing a transplant decision. Methods: A multiple-case study approach described decisional conflict in various SCD severity/donor risk decisional contexts. Cases included parents, child/adolescent with SCD, and sibling donor. The level and source of conflict was measured via O'Connor's Decisional Conflict Scale and analyzed using pattern-matching and cross-case synthesis. In-depth descriptions of conflict sources were obtained through thematic analysis of observation and interview data. Results: Among 11 participants in four cases (i.e. family units) decisional conflict was not unique not to the decisional context. Conflict levels represented a level that can be linked with feeling unsure and decisional delay. The theme, ‘navigating decisional conflict together’, described how family units discussed uncertainties. Conclusion: Varying levels and sources of decisional conflict exist in pediatric patients with SCD and their families considering transplant. Practice Implications: In our cases, decisional conflict and the transplant decision occurred at the family-level. Clinicians should encourage all family members to participate in discussions concerning transplant.
KW - Case study
KW - Decision making
KW - Families
KW - Stem cell transplant
UR - http://www.scopus.com/inward/record.url?scp=85096902851&partnerID=8YFLogxK
U2 - 10.1016/j.pec.2020.10.011
DO - 10.1016/j.pec.2020.10.011
M3 - Article
C2 - 33234442
AN - SCOPUS:85096902851
SN - 0738-3991
VL - 104
SP - 1086
EP - 1093
JO - Patient Education and Counseling
JF - Patient Education and Counseling
IS - 5
ER -