Focused ethnography explores freedom, flexibility, and psychosocial benefits in type 1 diabetes after islet transplantation, indicating significant lifestyle improvements.
Introduction and Objective: Type 1 diabetes (T1D) requires constant self-management and carries substantial psychological and lifestyle burdens. Cell-based therapies such as islet transplantation (ITx) may reduce reliance on exogenous insulin and meaningfully alter lived experience. Objectives: To explore perceptions of freedom, flexibility and risk among ITx recipients and health-care providers (HCPs). Secondly, to increase awareness of ITx benefits and challenges for individuals with T1D, HCPs, and policymakers. Methods: Using focused ethnography, semi-structured interviews were conducted with adult ITx recipients, family members, and transplant-HCPs. Thematic analysis was used to systematically identify and interpret patterns across participant narratives. Results: Identified themes reflected increased autonomy, quality of life, and re-engagement in restricted activities. Participants described freedom from constant T1D vigilance, leading to greater daily flexibility, psychological relief, and renewed social and professional participation. Additionally, HCP-patient relationships were central to care trajectories, with trust, advocacy, and shared decision-making shaping T1D care, transplantation experiences, and sustained outcomes. Conclusion: ITx offers both biomedical and psychosocial benefits for people living with T1D. Findings underscore the importance of patient-reported outcomes (PROs) that capture daily experiences, psychosocial well-being, and relational aspects of care. Developing novel tools for measuring perceived freedom, flexibility, quality of life, and care relationships beyond glycemic metrics will be essential to fully assess the impact of emerging cell treatments and possible curative therapies. Disclosure R. Lucciantonio: Speaker's Bureau; Current; Abbott Diabetes, Dexcom, Inc. Advisory Panel; Ended; Diabetes Canada, Novo Nordisk Canada Inc. Speaker's Bureau; Current; Tandem Diabetes Care, Inc. Consultant; Current; Medtronic, Insulet Corporation. Research Support; Ended; Vertex Pharmaceuticals Incorporated. R. Crossman: None. P. Senior: Consultant; Ended; Abbott. Consultant; Current; Dexcom, Inc. Consultant; Ended; GlaxoSmithKline plc. Research Support; Current; Eli Lilly and Company. Consultant; Current; Novo Nordisk, Sana Biotechnology Inc., Sanofi, Vertex Pharmaceuticals Incorporated. Consultant; Ended; Ypsomed AG. Funding Canadian Institute of Health Research (524598)
No takes yet. Share an insight, caveat, or question.
Lucciantonio et al. (2026) studied this question.
Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context: