Living with type 1 diabetes in Neno, Malawi: A qualitative study

AbstractBackgroundThe prevalence of type 1 diabetes (T1D) is thought to be growing in low-income countries such as Malawi, despite a lack of epidemiological data and published literature in many areas. In low-income countries, T1D care is frequently impacted by challenges in diagnosis and management, including misdiagnosis and access to insulin, which can increase prevalence of severe complications and affect T1D outcomes. Access to high-quality T1D care remains limited in Malawi, with fairly low availability and high cost of insulin as well as other supplies and diagnostics, lack of T1D knowledge, and absence of readily accessible guidelines. In the Neno district, Partners In Health established advanced care clinics at district hospitals provide comprehensive, free care for T1D and other noncommunicable diseases. Here we seek to examine the impact of living with T1D, knowledge and self-management, and facilitators and barriers to T1D care in this district.MethodsWe conducted a qualitative study consisting of interviews conducted in Neno, Malawi with people living with type 1 diabetes (PLWT1D), their families, providers, and civil society members to explore the psychosocial and economic impact of living with T1D, T1D knowledge and self-management, and facilitators and barriers to accessing care.ResultsThis study found that PLWT1D had good knowledge and practice of self-management activities for T1D. Key facilitators to care identified by informants included extensive patient education and availability and provision of free insulin and supplies. Significant barriers included distance from health facilities, food insecurity, and low literacy/numeracy. Informants described T1D as having a notable psychosocial and economic impact on PWLT1D and their families, notably worrying about having a lifelong condition, high transportation costs, and reduced ability to work. While home visits and transport refunds helped facilitate access to the clinic, informants reported the refunds as inadequate given high transport costs faced by patients.ConclusionsT1D was found to have a significant impact on PLWT1D and their families. Our findings represent important areas of consideration in design and implementation of effective programs for treating PLWT1D in resource-limited settings. Facilitators to care identified by informants may be applicable and beneficial in similar settings, while persisting barriers represent areas for continued improvement in Neno.