To explore the lived experiences of children with type 1 diabetes (T1D) and their caregivers in Armenia, a post-Soviet country, and to identify system-level barriers to care from the community perspective.

Qualitative study using a phenomenological design with inductive thematic analysis.

Muratsan Hospital Complex, the primary national referral centre for paediatric endocrinology, Yerevan, Armenia.

12 children aged 13–17 years with T1D and their caregivers, recruited through purposive sampling across 7 of Armenia’s 10 administrative regions.

Five themes emerged from the data: (1) barriers to care, (2) quality of care, (3) perceived control of T1D, (4) knowledge of T1D and (5) government and non-governmental organisation (NGO) support. Participants described unreliable government-supplied glucose strips, geographical barriers rooted in the centralisation of specialist care in the capital, abrupt withdrawal of state support at age 18, reliance on the KATIL NGO to fill gaps in both clinical and psychosocial support and pervasive stigma encountered across family, school and clinical settings.

Children with T1D in Armenia navigate a post-Soviet health system where provisions exist but remain fragmented, limited by centralised care, geographical barriers and variable support. This unique context shapes the relationship and expectations patients have of the healthcare system. Community perspectives are indispensable in these settings, surfacing system-level gaps that conventional data cannot capture. These findings have relevance for other health systems navigating similar structural transitions.