Simulation-Based Strategies Co-Designed With Young Adults for Sickle Cell Disease Self-Management.

BACKGROUND

Young adults living with sickle cell disease (SCD) face complex self-management challenges during care-seeking. Developmentally appropriate, experiential interventions remain limited. Interventions to prepare young adults for emotionally charged real-world situations such as emergency department encounters, peer communication, and independent decision-making are needed.

PURPOSE: To describe the co-design of a simulation-based self-management intervention for young adults living with SCD and conduct evaluation of 6 intervention implementation parameters: necessity, acceptability, feasibility, safety, fidelity, and preliminary effectiveness.

METHODS

Using mixed-methods design guided by community-based participatory research and human-centered design, young adults living with sickle cell disease, caregivers, and community stakeholders co-created a simulation-based intervention with 3 video-supported scenarios with structured role-play and facilitated debriefing. Thirty participants aged 18 to 20 years completed pre-post surveys and participated in post-intervention focus groups. Quantitative data were analyzed using paired-sample t-tests, and qualitative data were analyzed using inductive thematic analysis.

RESULTS

Implementation evaluation demonstrated strong outcomes across all parameters. Participants indicated that the intervention is necessary, acceptable, feasible, safe, effective, and has high fidelity. Statistically significant improvements in self-efficacy were observed post-intervention. Qualitative findings supported these outcomes, with participants reporting increased confidence in emergency department advocacy, communication with healthcare providers and peers, and proactive self-management behaviors.

CONCLUSION

Evaluation of the 6 intervention implementation parameters supports the use of simulation-based self-management intervention for young adults living with sickle cell disease. Integrating community voices and experiential learning strategies enhances self-efficacy, promotes meaningful behavior change, and improves real-world health management readiness during the critical period of emerging adulthood.