Open-source automated insulin delivery systems and formal healthcare: A qualitative study of challenges in the interaction between service-users with type 1 diabetes and healthcare professionals.

OBJECTIVES: To explore the challenges that open-source automated insulin delivery systems pose to the encounter between service-users and healthcare professionals and how these challenges might be addressed in the future. METHODS: Five adult service-users and six healthcare professionals participated in semi-structured interviews. A six-step thematic analysis was conducted, the focus being on challenges and needs for improvement of the interactions. RESULTS: The analysis revealed three overarching challenges and wishes: (1) Lack of exchange of experiences. Service-users are reticent about disclosing their use of the systems to healthcare professionals. (2) Unclear ethical responsibility. Service-users are aware of their responsibility and guidelines can help to alleviate healthcare professional's legal responsibility; however, ambiguities around ethical responsibility for healthcare professionals remain an impediment to meaningful clinical interactions. (3) Unresolved individual and mutual expectations. Service-users expect better access to technology and focus on psychosocial aspects. In contrast, healthcare professionals fear the burden associated with the rising technical expectations. CONCLUSION: Transparency and openness towards open-source systems need to be part of service-user and healthcare professionals interaction. Requirements for future care include improved knowledge about the systems, an openminded approach towards user-driven initiatives among healthcare professionals, and a focus on psychosocial aspects in the interaction.

Patient perspectives on peer support for adults with type 1 diabetes: a need for diabetes-specific social capital.

AIM: To explore the function of peer support from the perspective of adults with type 1 diabetes in Denmark. METHODS: The study population consisted of 20 adults with type 1 diabetes. The sample was diverse in relation to educational background, age, sex, and cohabitation status. Inspired by action research, several methods and perspectives on peer support were explored and tested. Workshops and group and individual interviews were performed. Systematic text condensation was used to analyze data, supplemented with theory-based interpretive analysis. RESULTS: Adults with type 1 diabetes found peer support highly relevant to reduce a burdensome feeling of diabetes-specific loneliness. Peer support showed potential to create diabetes-specific social capital not only by creating reciprocal social support between peers but also, more importantly, by creating space for genuine trust and a feeling of communality. There was a widespread feeling of the pervasive impact of diabetes on daily life and thus the relevance of discussing all aspects of life. However, participants perceived peer support as particularly relevant in relation to big changes in life, for example, in family life, at work, or through treatment events such as getting an insulin pump. CONCLUSION: Peer support programs focusing on creating and establishing diabetes-specific social capital using participatory approaches seem highly relevant among adults with type 1 diabetes. Content, methods, and effects of peer support need further exploration in collaboration with adults with type 1 diabetes.