JMIR Publications

ABSTRACT

Background:

Despite the advent of newer therapeutic agents, many individuals with T2D will require insulin treatment. Insulin refusal and cessation of treatment in this group is common and their needs under explored.

Objective:

To understand the experiences and perspectives of individuals with type 2 diabetes who have been recommended or prescribed insulin therapy, expressed on online health forums.

Methods:

Setting: Retrospective archived forum threads from the two largest, freely and publicly accessible diabetes health forums in the UK were screened over a 12-month period (August 2019-20). Design: Within the Diabetes UK forum, the search term ‘insulin (title only)’ was employed to identify relevant threads. Within Diabetes.co.uk, threads were screened within an existing ‘Type 2 with insulin’ message board. Three independent researchers coded the forum threads and posts. Pertinent themes and subthemes were identified and have been illustrated by paraphrasing of members quotes, to ensure anonymity. Participants: n=299 posts from 29 threads from Diabetes UK and n=295 posts from 28 threads from Diabetes.co.uk, were analysed over the study period. Fifty-seven threads in total met the inclusion criteria and were included in the thematic analysis.

Results:

Four overarching themes with subthemes were generated to illustrate the unmet needs that had prompted members to seek information, advice and support outside of their usual care provision, via the forums: (1) unmet practical needs and self-management support; including insulin injection technique, titration, travel, driving with insulin and utilising new technology, (2) psychological and peer support; advice, encouragement and empathy, which was readily offered and well received, (3) seeking and providing extended lifestyle advice; discussions around alternative diet strategies, types of activity and their effects on glycaemia and body weight, and (4) relationships with health care professionals (HCPs); including recounting of problematic experiences such as paternalism, lack of HCP knowledge and inadequate provision of effective insulin focused diabetes self-management education.

Conclusions:

This is the first study to utilise data from online health forums, to characterise the experiences and perspectives of people with T2D who are recommended or prescribed insulin therapy. The observed naturalistic conversations have generated useful insights. Our findings suggest there are additional needs that are not being currently met by health care providers. They also suggest that problematic relationships with HCPs remain a barrier to effective insulin therapy. The study results will help to directly inform insulin focused diabetes self-management and support strategies, in order to enable individuals to achieve their best outcomes.