Development of Let's Get REAL: A Family Intervention for Pediatric Stem Cell Transplant and Cellular Therapy...

Youth feel uninformed in stem cell transplant and cellular therapy (SCTCT) decisions and those as young as 8 years of age want to be included in discussions. Decision support interventions for youth are few, and interventions targeting the youth-family interaction warrant attention.

The objective was to develop a family intervention to increase youth involvement in treatment decision-making (TDM) about SCTCT. A secondary objective was to obtain preliminary data on perceived usability (acceptability, feasibility, and appropriateness) of the intervention.

We used an iterative development process that included focus groups and individual interviews with an advisory panel and three groups: youth (8-17 years of age) and their parents; SCTCT providers; and experts in health communication and bioethics. Participants reviewed and discussed draft intervention materials, then completed a usability survey. Qualitative data were examined using content analysis and descriptive statistics summarized the quantitative data.

Thirty-three participants provided feedback on content, design, delivery, perceived helpfulness, goals, and possible unintended harms. We made improvements to the final content, design, and delivery based on their suggestions. For example, we incorporated preferred terms and wording throughout, more color and illustrations, and multiple modes of delivery (e.g., paper and digital). The intervention was viewed as acceptable, feasible, and appropriate for the SCTCT decision context.

A family intervention called Let's Get REAL (Ready to Engage And Learn) about SCTCT was developed with experts and intended end-users. The intervention booklet is ready for real-time testing by youth and families referred for SCTCT.