Using Community Engagement Methods to Guide Study Protocol Decisions for School-Aged Children With Type 1 Diabetes

Area of Science:

• Pediatric Endocrinology
• Neuroscience
• Community-Based Participatory Research

Background:

• Developing multisite research protocols for newly diagnosed children with type 1 diabetes presents significant challenges.
• Longitudinal studies are crucial for understanding neurocognitive function in this population.

Purpose of the Study:

• To engage community members, specifically caregivers of children with type 1 diabetes, during the planning phase of a longitudinal study.
• To gather input on study protocol design to enhance participant recruitment and study success.

Main Methods:

• Caregiver input was solicited using two primary methods: a survey (n=21) and a Community Engagement (CE) Studio (n=7).
• The survey assessed factors influencing family participation likelihood.
• The CE Studio focused on gathering recommendations for recruitment and enrollment strategies.

Main Results:

• Both methods indicated strong caregiver interest and willingness to participate in the longitudinal study.
• Caregivers expressed preferences for compensation, convenient visits, flexible scheduling, and receiving neurocognitive test results.
• The CE Studio provided additional insights for minimizing participant burden and improving communication.

Conclusions:

• Feasibility surveys and CE Studios are effective tools for obtaining crucial caregiver input in study planning.
• The CE Studio approach is particularly efficient, yielding valuable community insights with minimal research staff effort.