Living with and managing type 1 diabetes in humanitarian settings: A qualitative synthesis of lived experience and stakeholder tacit knowledge

Abstract

Humanitarian health actors are beginning to better consider and manage non-communicable diseases, such as diabetes, in emergency and protracted crisis settings. However, a focus on the more globally prevalent type 2 diabetes (T2D) dominates. Blind spots prevail in the unmet needs for type 1 diabetes (T1D), a chronic autoimmune condition where individuals are unable to produce insulin, thereby dependent on lifelong insulin therapy and blood glucose management. Although some T1D management requirements overlap with those of T2D, the immediate risk of fatal complications following insulin therapy disruption, the earlier age of onset during childhood, adolescence or young adulthood, and its lower prevalence compared to T2D within communities and local health systems mean that T1D requires nuanced consideration and targeted interventions. Intending to inform program and policy design for people with T1D (PWT1D), we synthesized themes of lived experience from PLWT1D and their caregivers, and the tacit working knowledge of health providers and policymakers in the context of local humanitarian operations. Through a strategic search of health databases (up to July 2023), we identified 11 articles that include interview excerpts from PWT1D, caregivers, healthcare providers and policymakers about T1D management in humanitarian settings. We used reflexive thematic analysis to guide data extraction, coding, and synthesis, resulting in the identification of four overarching themes: food and insulin security, family relations, knowledge translation, and response to diagnosis. The narratives highlight harsh trade-offs made by PWT1D and their families in the face of insulin and food insecurity, as well as the damaging impact of low T1D education in families, communities and health systems. Targeted family and community-based solutions are urgently required, alongside systemic reforms and international collaboration to enable better T1D coping and management in humanitarian settings.