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Using Community Engagement Methods to Guide Study Protocol Decisions for School-Aged Children With Type 1 Diabetes
Fayo Abadula1, Lori C Jordan2, Lauren LeStourgeon1
1Division of Pediatric Psychology, Department of Pediatrics, Vanderbilt University Medical Center, Nashville, TN.
Insights
Engaging caregivers through surveys and Community Engagement (CE) Studios is vital for successful type 1 diabetes research. This input helps refine study protocols, ensuring participant willingness and optimizing recruitment for pediatric neurocognitive studies.
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.
Introduction:
Many challenges exist in developing multisite protocols for newly diagnosed children with type 1 diabetes. Our research team engaged community members to increase the likelihood of study success during a planning grant for a longitudinal study aimed at understanding risk and protective factors for neurocognitive function in school-aged children newly diagnosed with type 1 diabetes.
Methods:
Two methods were used to obtain caregiver input into study protocol decisions. The first was a survey given to caregivers of children with diabetes (n = 21) about which aspects of the study protocol would make families more or less likely to participate. The second was a Community Engagement (CE) Studio to obtain recommendations from a diverse group of caregivers of children with diabetes (n = 7) on key aspects of recruitment and enrollment.
Results:
Results from both the survey and the CE Studio indicated that caregivers were interested and willing to participate in a longitudinal study of this nature. Both methods resulted in similar preferences for the type and amount of compensation, convenient study visits, flexible scheduling options, and receipt of neurocognitive test results. Recommendations from the CE Studio included additional strategies to minimize participant burden and enhance communication around study participation.
Conclusion:
Both the feasibility survey and the CE Studio were useful mechanisms to obtain caregiver input during the study's planning and design phase. Uniquely, the CE Studio approach offers researchers the ability to gain valuable community member input with minimal staff effort.
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