Fellowship for Michelle Roberts: From Survival to Living Well: A Socioecological Approach to Understand Acquired Disability and Advance Health Equity in Rural Appalachia

ABSTRACT People with disabilities are at risk of dying up to 20 years earlier than people without disabilities and are twice as likely to develop asthma, depression, diabetes, obesity, oral diseases, and stroke due to systemic and persistent health inequities. Appalachian Kentucky, an underserved rural area, has disability rates twice as high as the national average: 22.9% of Appalachian Kentuckians are disabled compared to 15.6% of non- Appalachian Kentuckians and 12.7% of Americans overall. Despite being the largest minority group in the United States and experiencing persistent inequities, people with disabilities remain underrepresented in biomedical and behavioral science research. This inequity and a lack of existing research compel us to obtain grounded insights on how people experiencing a serious health event manage post-hospitalization acquired disability and what supports are needed to mitigate health challenges. To address and alleviate long-term disability and associated health inequities, we propose a deep ethnographic investigation to understand the nature of disability acquired after an acute health event, including subsequent care throughout the life course, in the disproportionately affected rural communities of Appalachian Kentucky. Ethnographic studies enable a holistic—personal, environmental, sociocultural, and political—perspective to understand individuals’ everyday lived experiences and identify opportunities to reduce adverse health outcomes. Specifically, while formal medical care plays an invaluable role in saving the lives of people who experience an acute health event such as traumatic injury or stroke, these patients and their families are often left to manage the enduring challenges of living with acquired disability on their own. Our long-term objective is to reduce health inequities by identifying approaches to better support people with disabilities and their families. We propose two related aims: (1) to ethnographically investigate and describe experiences of acquired disability among those with disabilities, their informal caregivers (family and social relations), and formal caregivers (health and human service providers) in Appalachian Kentucky and (2) to develop, refine, and verify a shared, culturally meaningful model of disability that identifies the challenges faced by disabled Appalachian Kentuckians, strategies for living well with disability, and opportunities to improve care and quality of life. A robust understanding of disability and care based on grounded experiences will inform the development of culturally meaningful interventions to mitigate health inequities and improve quality of life for people with disabilities and their families.