Managing Health Without Stable Housing: Dimensions of Treatment Burden and Patient Capacity for People With Chronic Health Conditions Experiencing Homelessness

Abstract

Although chronic health conditions and homelessness are prevalent problems in the United States and globally, little research has used the lens of burden of treatment theory to examine the experiences of people facing these challenges simultaneously. This study aimed to illuminate dimensions of treatment burden, which refers to the work of being a patient with chronic conditions, and patient capacity to manage this burden in a sample of people experiencing homelessness and chronic health problems in Buffalo, New York, United States. We completed in-depth interviews with men and women recruited from a homelessness services organization (N = 27) and applied core concepts from burden of treatment theory to our analysis to probe how participants navigated tasks related to treatment and self-care. Using codebook thematic analysis involving three coders, results revealed four interconnected themes of complex coordination, self-monitoring, obtaining and using prescriptions and medical supplies, and communication and explaining health issues, which were confirmed through member checking (N = 6). These dimensions of treatment burden were dynamically impacted by patient capacity factors—which included trauma, medical mistrust, health literacy, and social support—as well as by social determinants of health such as housing and income. Findings support the need for more formal collaboration mechanisms between healthcare providers and social service agencies, active involvement of patients in their health plans, and policies such as Housing First to improve access to stable and affordable housing and social services for people with complex health issues.