Abstract
Background: Type 1 diabetes (T1D) is a complex chronic condition that contributes to various health complications, including mental health challenges. This is because the demands of the day-to-day management of T1D can take a psychological toll. This is especially true for young adults (18-29 years) who, in addition to the need to cope with the social, physical, and emotional changes of this age stage, are also learning to self-manage their condition more independently. Despite the importance placed on understanding the health issues of young adults living with T1D and offering more personalized care options, there are known challenges to engaging this population in health research. These challenges are attributed to several causes, including exclusionary and stigmatizing recruitment approaches, and skepticism about research due to unbalanced power differentials, historical misuse of data, and a lack of meaningful existing relationships. To capture the necessary voices in co-design work, one solution to overcome these challenges is to further engage people with lived experience in study processes, including recruitment.
Objective: To detail an intentional approach to engaging individuals with lived experience of T1D and mental health challenges in the development and implementation of a recruitment strategy. This strategy was designed in tandem with the co-design of an innovative integrated care program that emphasizes the perspectives and experiences of these key stakeholders.
Methods: Recognizing the need to design models of care to meet the complexity of living with both T1D and mental health challenges for young adults, a multi-phase mixed methods co-design trial titled Technology-enabled Collaborative Care for Young Adults with Type 1 Diabetes and Diabetes Distress (TECC-T1D3) is ongoing. Young adults with T1D have been engaged in project planning, prototype development, and in the design and testing of a structured, user-friendly, and scalable mental health intervention. While a co-design approach has been used since study inception, during the planning of the co-design phase of the project it was identified that there was further need for strategic recruitment of participants that reflect the diverse needs of this population. To do this, a Partner Advisory Council (PAC) made up of eight members led a sophisticated recruitment approach that included the use of established list-servs, community groups, and one-on-one connections.
Results: Over the course of just a few months, the PAC recruited 19 young adults with lived experience to participate in one-on-one co-design interviews, and 4 young adults, 4 family and friends, and 4 health professionals and researchers to participate in two co-design events. The efficient recruitment of a diverse sample has provided invaluable insights into the nuanced challenges faced by this population, shaping the subsequent development of the integrated care program.
Next Steps: An understanding based in the rich, varied, and complex lived experiences of those living with T1D contribute to the development of critically necessary community-based care solutions capable of addressing health disparities – especially for those living with co-occurring mental health challenges. Building on this success, PAC members will continue to play a pivotal role in the ongoing research process as co-researchers.