Exploring the Experiences and Perspectives of Insulin Therapy in Type 2 Diabetes via Web-Based UK Diabetes Health Forums: Qualitative Thematic Analysis of Threads

BACKGROUND: Despite the advent of type 2 diabetes (T2D) remission strategies and novel therapeutic agents, many individuals with T2D will require insulin treatment to achieve target glycemia, with the aim of preventing or delaying diabetes complications. However, insulin refusal and cessation of treatment in this group are common, and their needs are underreported and relatively unexplored. OBJECTIVE: This study aimed to explore the experiences and perspectives of individuals with T2D for whom insulin therapy is indicated as expressed on web-based health forums, in order to inform the development of evidence-based structured educational and support strategies and improve health care provider awareness. METHODS: Retrospective archived forum threads from the 2 largest, freely and publicly accessible diabetes health forums in the United Kingdom were screened over a 12-month period (August 2019-2020). The Diabetes UK and Diabetes.co.uk forums were searched for relevant threads. A total of 3 independent researchers analyzed the forum threads and posts via thematic analysis. Pertinent themes were identified and illustrated by paraphrasing members’ quotes to ensure anonymity. A total of 299 posts from 29 threads from Diabetes UK and 295 posts from 28 threads Diabetes.co.uk were analyzed over the study period. In all, 57 threads met the inclusion criteria and were included in the final analysis. RESULTS: Four overarching themes were generated to illustrate the unmet needs that prompted members to seek information, advice, and support regarding insulin therapy outside of their usual care provision via the forums: empowerment through sharing self-management strategies, seeking and providing extended lifestyle advice, relationships with health care professionals, and a source of psychological peer support. CONCLUSIONS: This is the first study to collect data from web-based health forums to characterize the experiences and perspectives of people with T2D for whom insulin therapy is indicated. The observed naturalistic conversations have generated useful insights; our findings suggest that there are significant unmet self-management and psychological needs within this group that are not being met elsewhere, prompting the seeking of information and support on the web. These include practical aspects such as insulin injection technique, storage and dose titration, driving and travel considerations, the emerging use of technology, and a strong interest in the effects of extended lifestyle (diet and activity) approaches to support insulin therapy. In addition, problematic relationships with health care professionals appear to be a barrier to effective insulin therapy for some. In contrast, seeking and offering mutually beneficial, practical, and psychological support from peers was viewed as enabling. The study results will help to directly inform insulin-focused self-management and support strategies to enable individuals in this group to achieve their best outcomes.