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.