Utilizing Crowdsourcing to Incorporate the Voice of the Family When Developing a Diabetes Distress Intervention

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.

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.

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.

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.