An emerging group of adults with type 1 diabetes are building and using their own artificial pancreas systems (e.g. AndroidAPS, OpenAPS, Loop). These systems are currently not endorsed by regulatory bodies. We explored the experiences of adults with type 1 diabetes with these ‘user-led’ systems, to understand: 1) perceived differences in experience compared to their previous diabetes management, 2) challenges encountered, and 3) how they overcome these.
We conducted semi-structured telephone interviews with 23 Australian adults (age 25-64 years; 10 women; previously 21 using insulin pump, 23 using continuous glucose monitoring), with experience (1-34 months) of user-led systems. Interviews were recorded, transcribed, and analysed thematically.
Compared to their previous diabetes management, participants reported a range of benefits including more stable glucose levels, better sleep quality and reduced psychological burden. The challenges reported included technical and financial issues (associated with building their system), being unable to seek support from healthcare professionals or industry, and their own/others’ perceptions of risk. Participants overcame challenges through the empowerment gained from building their own systems, and seeking out support from others (e.g. peers using ‘user-led’ systems and family members). Peer support was important for technical support and building confidence (via modelled behaviour and the reassurance of having a 24/7 online community).
Australian adults experience several benefits from user-led diabetes technologies, however these are juxtaposed by the challenges of building their own systems. Participants are able to navigate these challenges due to support (especially from peers), and the empowerment gained from building/using their own systems.