Psychoeducational programs such as the Mental Health in Diabetes Optimal Health Program (MINDS OHP) are generally well received among people with type 1 diabetes, with areas for improvement identified through participant focus groups, according to the results of research published in BMC Endocrine Disorders.
Researchers conducted a qualitative study with a convenience sample of people with type 1 diabetes to evaluate the experiences of participants in the MINDS OHP study, a psychoeducational self-empowerment intervention.
The study included 10 participants (6 women; mean age, 47 years) with type 1 diabetes who had participated in MINDS OHP. Five of the 10 participants took part in a focus group; the remaining 5 were interviewed individually in a face-to-face setting.
Two overarching themes — MINDS OHP experiences and lived experience with diabetes — with 5 subthemes each emerged from these interviews.
In overall discussions of MINDS OHP experiences, the 5 subthemes included program benefits, timing and follow-up, suggested improvements, collaborative partners, and materials suitability. Feedback for the program was “highly positive” across interviews, with most participants emphasizing the relevance, educational value, and broad perspective that the program provided. Most participants appreciated the timing of the program and its novelty, with participants suggesting that early delivery — ideally from the first day of diagnosis — is best.
In terms of improvements, participants suggested that the program could better support those with type 1 diabetes by including diabetes educators in the creation and facilitation of each session, as well as better training facilitators for diabetes management. One participant also suggested that the program provide a list of psychiatrists or other mental health professionals who were familiar with the program as a potential source for referrals.
The support and flexibility of the program was also praised, with 1 participant suggesting that the MINDS OHP program should be offered both to and by health professionals who are involved in the care of individuals with type 1 diabetes. Another suggested that the program should encourage a family member or caregiver to attend for at least 1 session, and further programming for caregivers would be appreciated and valued.
The primary area for improvement was the mode of delivery and access to the program. Participants suggested that program outreach could improve by incorporating phone or video conferencing technology, meeting participants in their homes to improve accessibility, and working to remove geographic barriers in some regions. Program workbooks and exercises were generally well received.
In discussions of lived experiences with type 1 diabetes, the 5 subthemes included mental health, support networks, stigma and shame, management intrusiveness, and adolescence and critical life points.
Participants primarily emphasized the importance of the MINDS OHP program in supporting their well-being. Discussants mentioned the impact of type 1 diabetes on mental health due to the complexity and intrusiveness of disease management, as well as how stress affects diabetes. Participants consistently discussed the idea of “bridging the gap” between diabetes care and mental health care.
Also emphasized was the importance of peer connection and support when living with type 1 diabetes — particularly the understanding provided by peers with diabetes. Peer support was indicated as one of the most important things, alongside family support, which was described as integral.
Participants also identified stigma as a key stressor in living with type 1 diabetes; people indicated they were ashamed to disclose their diagnosis due to “numerous negative connotations” and the perceived ignorance about type 1 diabetes within society and among family members.
The constant vigilance needed to manage diabetes was identified as a contributor to diabetes-related stress. Constant monitoring of blood sugar led to exacerbated stress in both patients and their families. Adolescents were identified as particularly vulnerable to diabetes-related distress and adverse health consequences. One participant stated that addressing so-called critical time points, such as initial diagnosis or adolescence, can help teens with type 1 diabetes address their mental health and physical health at the same time.
Limitations of this research includes the small sample size, although the researchers were able to justify it as sufficient due to the type of study.
“The MINDS OHP was generally well received as a psychoeducational intervention for individuals with [type 1 diabetes],” the researchers wrote, adding that the findings highlight gaps — including “the failure to address more overtly the needs of family members and adolescents, particularly early on.”
“It is recommended that bridging this gap will contribute to improved development, reach, and impact of the program,” they concluded. “Consideration should be given to the inclusion of the program in the clinical management of diabetes, preferably in primary care.”
Ferrier L, Ski CF, O’Brien C, et al. Bridging the gap between diabetes care and mental health: perspectives of the Mental Health in Diabetes Optimal Health Program (MINDS OHP). BMC Endocr Disord. 2021;21(1):96. doi:10.1186/s12902-021-00760-3