Qualitative Study of Pathways to Care among Adults with Diabetes in Rural Guatemala

Objective The burden of diabetes mellitus is increasing in low-income and middle-income countries (LMICs). Few studies have explored pathways to care among individuals with diabetes in LMICs. This study evaluates care trajectories among adults with diabetes in rural Guatemala. Design A qualitative investigation was conducted as part of a population-based study assessing incidence and risk factors for chronic kidney disease in two rural sites in Guatemala. A random sample of 807 individuals had haemoglobin A1c (HbA1c) screening for diabetes in both sites. Based on results from the first 6 months of the population study, semistructured interviews were performed with 29 adults found to have an HbA1c≥6.5% and who reported a previous diagnosis of diabetes. Interviews explored pathways to and experiences of diabetes care. Detailed interview notes were coded using NVivo and used to construct diagrams depicting each participant’s pathway to care and use of distinct healthcare sectors. Results Participants experienced fragmented care across multiple health sectors (97%), including government, private and non-governmental sectors. The majority of participants sought care with multiple providers for diabetes (90%), at times simultaneously and at times sequentially, and did not have longitudinal continuity of care with a single provider. Many participants experienced financial burden from out-of-pocket costs associated with diabetes care (66%) despite availability of free government sector care. Participants perceived government diabetes care as low-quality due to resource limitations and poor communication with providers, leading some to seek care in other health sectors. Conclusions This study highlights the fragmented, discontinuous nature of diabetes care in Guatemala across public, private and non-governmental health sectors. Strategies to improve diabetes care access in Guatemala and other LMICs should be multisectorial and occur through strengthened government primary care and innovative private and non-governmental organisation care models.