Empowering emerging adults with type 1 diabetes: crafting a financial and health insurance toolkit through community-based participatory action research

• Published in: Research involvement and engagement 2024-07, Vol.10 (1), p.75-12, Article 75
• Main Authors: Blanchette, Julia E, Lewis, Claudia B, Shannon, Chantel S, Kanchibhatla, Anuhya, Rieke, Jorden, Roche, Mary Jane, Johnson, Dove-Anna, Williams, Dionne, Webb, Shay, Diaz, Crystal N, Lundgrin, Erika L, Allen, Nancy A, Litchman, Michelle L, Hatipoglu, Betul
• Format: Article
• Language: English
• Subjects: Adults; Analysis; Community-engaged participatory action research; Diabetes therapy; Emerging adults; Financial stress; Health insurance; Health insurance industry; Health insurance literacy; Hospitals; Literacy; Medicaid; Social networks; Type 1 diabetes; Type 2 diabetes
• ISSN: 2056-7529; 2056-7529
• DOI: 10.1186/s40900-024-00602-1

Emerging adults aged 18-30 years face challenges during life transitions, with an added burden of navigating the health care system and additional costs associated with diabetes. This stress is compounded by overall low levels of health insurance literacy in this population, as people may not know about available financial and health care resources to minimize suboptimal diabetes outcomes. This study aimed to tailor a financial and health insurance toolkit to emerging adults with type 1 diabetes, including racially, ethnically diverse, and Medicaid-insured individuals, through community-based participatory action research. An academic research team and community members from a national organization held six online community advisory board (CAB) content-creation meetings to understand how to tailor a financial and health insurance Toolkit. The CAB was comprised of six racially and insurance-diverse emerging adults with type 1 diabetes and four content experts (clinical, financial, and insurance). Six 60-minute online CAB meetings were held via University Hospitals (UH)-encrypted Zoom over five months. Pre-reading materials were emailed to CAB members before the meetings. A moderator established the purpose of each meeting and briefly discussed meeting rules before each meeting commenced. During the meetings, the moderator guided the discussions and provided the CAB members opportunities to respond and build on one another's feedback. A deductive thematic qualitative analysis was utilized. Three researchers independently coded the cross-referenced and de-identified CAB meeting transcripts and then convened to reach a group consensus. Two CAB members performed member-checking. The following key themes emerged to tailor the Toolkit: ensuring that content covers empowerment and self-advocacy, including genuine stories and multimedia visuals for aesthetics, addressing clinician bias, acknowledging racial and ethnic disparities in care, incorporating cultural representation, and demystifying Medicaid stigma. By successfully partnering with the CAB and a community organization through a community-based participatory action research approach, we will develop a financial and health insurance Toolkit tailored to the needs of racially and ethnically diverse and Medicaid-insured emerging adults with type 1 diabetes.