. 2024 Jul 23;10(1):75.

doi: 10.1186/s40900-024-00602-1.

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

Julia E Blanchette^{1

2}, Claudia B Lewis³, Chantel S Shannon^{3

4}, Anuhya Kanchibhatla^{3

5}, Jorden Rieke^{3

6}, Mary Jane Roche^{7

8}, Dove-Anna Johnson^{3

9}, Dionne Williams³, Shay Webb^{10

8}, Crystal N Diaz^{11

8}, Erika L Lundgrin^{3

9

12}, Nancy A Allen¹³, Michelle L Litchman¹³, Betul Hatipoglu^{3

9}

Affiliations

¹ Department of Medicine, Diabetes and Metabolic Care Center, Division of Endocrinology, University Hospitals, Cleveland, OH, USA. jeb195@case.edu.
² School of Medicine, Case Western Reserve University, Cleveland, OH, USA. jeb195@case.edu.
³ Department of Medicine, Diabetes and Metabolic Care Center, Division of Endocrinology, University Hospitals, Cleveland, OH, USA.
⁴ College of Public Health, Kent State University, Kent, OH, USA.
⁵ Department of Nutrition, Undergraduate Studies, Case Western Reserve University, Cleveland, OH, USA.
⁶ Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH, USA.
⁷ The Diabetes Link, Boston, MA, USA.
⁸ Young Adult Living with Type 1 Diabetes/Lay Person Community Member, New Hampshire, North Carolina, California, USA.
⁹ School of Medicine, Case Western Reserve University, Cleveland, OH, USA.
¹⁰ College of Pharmacy and Health Sciences, Campbell University, Buies Creek, NC, USA.
¹¹ Global Disease Biology, University of California, Davis, CA, USA.
¹² Divison of Pediatric Endocrinology, Rainbow Babies and Children's Hospital, Cleveland, OH, USA.
¹³ College of Nursing, University of Utah, Salt Lake City, UT, USA.

PMID: 39044303
PMCID: PMC11265338
DOI: 10.1186/s40900-024-00602-1

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

Julia E Blanchette et al. Res Involv Engagem. 2024.

. 2024 Jul 23;10(1):75.

doi: 10.1186/s40900-024-00602-1.

Authors

Affiliations

¹ Department of Medicine, Diabetes and Metabolic Care Center, Division of Endocrinology, University Hospitals, Cleveland, OH, USA. jeb195@case.edu.
² School of Medicine, Case Western Reserve University, Cleveland, OH, USA. jeb195@case.edu.
³ Department of Medicine, Diabetes and Metabolic Care Center, Division of Endocrinology, University Hospitals, Cleveland, OH, USA.
⁴ College of Public Health, Kent State University, Kent, OH, USA.
⁵ Department of Nutrition, Undergraduate Studies, Case Western Reserve University, Cleveland, OH, USA.
⁶ Frances Payne Bolton School of Nursing, Case Western Reserve University, Cleveland, OH, USA.
⁷ The Diabetes Link, Boston, MA, USA.
⁸ Young Adult Living with Type 1 Diabetes/Lay Person Community Member, New Hampshire, North Carolina, California, USA.
⁹ School of Medicine, Case Western Reserve University, Cleveland, OH, USA.
¹⁰ College of Pharmacy and Health Sciences, Campbell University, Buies Creek, NC, USA.
¹¹ Global Disease Biology, University of California, Davis, CA, USA.
¹² Divison of Pediatric Endocrinology, Rainbow Babies and Children's Hospital, Cleveland, OH, USA.
¹³ College of Nursing, University of Utah, Salt Lake City, UT, USA.

PMID: 39044303
PMCID: PMC11265338
DOI: 10.1186/s40900-024-00602-1

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords: Community-engaged participatory action research; Emerging adults; Financial stress; Health insurance; Health insurance literacy; Type 1 diabetes.

Plain language summary

Aim of the research: This study aims to tailor a financial and health insurance Toolkit to emerging adults, ages 18–30, with type 1 diabetes. Including the insight from racially and ethnically diverse and Medicaid-insured individuals in developing the Toolkit is essential.

Background to the research: Emerging adults with type 1 diabetes have stressful challenges such as navigating the healthcare system, the costs of diabetes, and general diabetes self-management. This stress is worsened by low levels of health insurance literacy and leads to suboptimal diabetes outcomes. This issue affects many individuals but dramatically impacts those who are racially and ethnically diverse or Medicaid-insured.

Design and methods used: Six online content-creation meetings were held to understand the Toolkit content needs and preferences. We analyzed the meeting transcripts to uncover common themes. Patient and public involvement: An academic research team, a national organization (The Diabetes Link), and a Community Advisory Board (CAB) partnered together. The CAB members were racially and insurance-diverse emerging adults with type 1 diabetes and content (financial, insurance, clinical diabetes) experts. We will continue to collaborate with the CAB members to develop a research protocol to test the effects of the Toolkit.

Dissemination: The research findings will be shared with young adult type 1 diabetes stakeholders, healthcare providers, and community and professional organizations. Dissemination strategies will include publications, community and scientific conference presentations, community events, and social media resources and content. The finalized Toolkit will be publicly available on the Diabetes Link Resource Hub.

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Conflict of interest statement

The authors declare no competing interests.

Figures

**Fig. 1**
Pilot Work: Toolkit on web browser and phone (Left) and diabetes link resource hub (Right)

**Fig. 2**
Pilot toolkit and proposed toolkit content

See this image and copyright information in PMC

References

1. Centers for Disease Control. Just Diagnosed With Type 1 Diabetes 2021 https://www.cdc.gov/diabetes/basics/diabetes-type-1-diagnosis.html.
1. Foster NC, Beck RW, Miller KM, Clements MA, Rickels MR, DiMeglio LA, et al. State of type 1 diabetes management and outcomes from the T1D Exchange in 2016–2018. Diabetes Technol Ther. 2019;21(2):66–72. 10.1089/dia.2018.0384 - DOI - PMC - PubMed
1. Arnett JJ, Emerging Adulthood. A theory of development from the late teens through the Twenties. Am Psychol. 2000;55(5):469–80. 10.1037/0003-066X.55.5.469 - DOI - PubMed
1. Peters A, Laffel L. Diabetes Care for emerging adults: recommendations for Transition from Pediatric to Adult Diabetes Care systems: table 1. Diabetes Care. 2011;34(11):2477–85. 10.2337/dc11-1723 - DOI - PMC - PubMed
1. Vitale RJ, Wentzell K, Laffel LMB. Fear that one day I may not be able to afford insulin: the emotional burden of diabetes costs during emerging Adulthood. Diabetes Technol Ther. 2022;24(12):915–9. 10.1089/dia.2022.0170 - DOI - PMC - PubMed

Grants and funding

G-2305- 05992/Leona M. and Harry B. Helmsley Charitable Trust

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

Affiliations

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

Authors

Affiliations

Abstract

Plain language summary

Conflict of interest statement

Figures

References

Grants and funding

LinkOut - more resources

Full Text Sources

Research Materials