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

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.

Early Identification of Barriers and Facilitators to Self-Management Behaviors in Pediatric Patients With Sickle Cell Disease to Minimize Hematopoietic Cell Transplantation Complications.

Hematopoietic cell transplantation (HCT) is an elective, curative treatment option for patients with sickle cell disease (SCD). Transplant requires extensive self-management behaviors to be successful. The purpose of this study was to describe potential barriers and facilitators to self-management in a group of pediatric patients with SCD prior to HCT and their medical outcomes post-HCT. A multiple case study approach was used to describe 4 pairs of transplant recipients grouped by age, donor type, and donor source. Each pair included a case with minimal and increased post-HCT complications. Complications included readmissions, graft-versus-host disease, systemic infections, and survival in the first year post-HCT. Variables were retrospectively collected and content analyzed to identify barriers and facilitators within and across pairs using existing self-management frameworks. While higher risk transplants experienced more complications, 3 of the 4 cases with increased complications had a larger number of modifiable barriers identified compared with those experiencing minimal complications. At least one modifiable barrier and multiple facilitators were identified in all cases. A standardized psychosocial assessment process with an established plan to mitigate barriers and promote facilitators to self-management is essential to optimize outcomes in patients with SCD undergoing elective HCT.

Decision making in pediatric hematopoietic cell transplantation: Influential factors vary among diseases.

Hematopoietic cell transplantation (HCT) is not a trivial treatment decision in pediatrics. We sought to understand what influences this decision-making process from the perspectives of the pediatric patients, their family, and physicians. Using integrative review methods, we identified 19 relevant studies: six qualitative, ten quantitative, and three mixed methods. Synthesis of the results revealed six themes describing patient, family, and provider decision-making processes with distinct subthemes contrasting influential factors among malignant and nonmalignant diseases. Identification of what influences HCT decision making will aid in development of decision support, education, and communication strategies. The child/adolescent voice and provider perspective warrant more attention.