Utilizing Crowdsourcing to Incorporate the Voice of the Family When Developing a Diabetes Distress Intervention.
Document Type
Article
Publication Date
Spring 2025
Identifier
DOI: 10.2337/ds24-0024
Abstract
OBJECTIVE: Diabetes distress (DD) is the negative emotional toll of living with or caring for type 1 diabetes, encompassing the pervasiveness of its daily demands. We recently developed Remedy to Diabetes Distress (R2D2), a screen-to-treat intervention for families of school-aged children with type 1 diabetes. This article reports on the use of crowdsourcing methods to design the intervention and capture the voice of parent stakeholders.
RESEARCH DESIGN AND METHODS: We recruited 41 parents of 8- to 12-year-olds with type 1 diabetes. In a secure online social network, we posted study questions to participants, who could respond to our questions and view and comment on other participants' responses (i.e., participants could interact as a "crowd"). An iterative approach allowed our questions to move from broad to specific, enabling parent input on treatment content.
RESULTS: Using a conceptual model of DD, we examined responses and applied codes to distill qualitative categories. We established substantial agreement on identified categories, with fidelity at κ = 0.615. In addition to providing broad feedback (e.g., on preferred language for common phrases used in type 1 diabetes interventions), parents also provided feedback on specific treatment components and the overall tone of the intervention. Parents highlighted benefit-finding and positive talk/self-talk as pertinent for incorporation into treatment.
CONCLUSION: This study illustrates the use of crowdsourcing methods to capture the voices of parents of school-aged children with type 1 diabetes when designing a DD intervention. The next phase of R2D2 will be a small pre-trial to evaluate the feasibility and acceptability of the intervention, followed by a proof-of-concept randomized controlled trial (RCT), during which family voices will continue to be incorporated.
Journal Title
Diabetes Spectr
Volume
38
Issue
2
First Page
180
Last Page
189
PubMed ID
40386817
Recommended Citation
Kahhan NA, Patton SR, Milkes AI, Clements MA, Pierce JS. Utilizing Crowdsourcing to Incorporate the Voice of the Family When Developing a Diabetes Distress Intervention. Diabetes Spectr. 2025;38(2):180-189. Published 2025 Feb 4. doi:10.2337/ds24-0024
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