Navigating decisional conflict as a family when facing the decision of stem cell transplant for a child or adolescent with sickle cell disease

Abstract

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.

Keywords: Case study; Decision making; Families; Stem cell transplant.