Patient experiences of diabetes and hypertension care during an evolving humanitarian crisis in Lebanon: A qualitative study

Abstract

Humanitarian health care models increasingly incorporate care for non-communicable diseases (NCDs). Current research evidence focuses on burden of disease, service provision and access to care, and less is known about patient’s experience of the continuum of care in humanitarian settings. To address this gap, this study explored experiences of displaced Syrian and vulnerable Lebanese patients receiving care for hypertension and/or diabetes at four health facilities supported by humanitarian organisations in Lebanon. We conducted in-depth, semi-structured qualitative interviews with a purposive sample of patients (n = 18) and their informal caregivers (n = 10). Data were analysed thematically using both deductive and inductive approaches. Both Syrian and Lebanese patients reported interrupted pathways of care. We identified three typologies of patient experience at the time of interview; (1) managing adequately from the patient’s perspective; (2) fragile management and (3) unable to manage their condition(s) adequately, with the majority falling into typologies 2 and 3. Patients and their families recognised the importance of maintaining continuity of care and self-management, but experienced substantial challenges due to changing availability and cost of medications and services, and decreasing economic resources during a period of national crises. Family support underpinned patient’s response to challenges. Navigating the changing care landscape was a significant burden for patients and their families. Interactions were identified between mental health and NCD management. This study suggests that patients experienced disrupted, non-linear pathways in maintaining care for hypertension and diabetes in a humanitarian setting, and family support networks were key in absorbing treatment burden and sustaining NCD management. Recommendations are made to reduce treatment burden for patients and their families and to support sustainable condition management.