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

ABSTRACT People with disabilities are significantly more likely to experience chronic conditions and are at risk of dying up to 20-years earlier than people without disabilities due largely to systemic and persistent health inequities. Appalachian Kentucky, an underserved rural area, has twice the U.S. rate of disability—22.7% compared with

12.6% nationally. Rates of new or “acquired disability” are escalating as medical advances allow more people to survive hospitalization and live with disability, yet we lack the knowledge to help people live well post- hospitalization. Specifically, while formal medical care plays an invaluable role in saving the lives of people who

experience an acute health event, these survivors and their families are often left to manage the enduring challenges of living with acquired disability on their own. I propose a mixed methods ethnographic investigation to understand the nature of acquired disability, 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’ lived experiences and identify opportunities to reduce adverse health outcomes. Long-term health is intimately

intertwined with broader cultural and structural factors that contribute to significant health disparities for rural, disabled, and underserved populations, including informal (family and social relations), formal (health and human services), and institutional (policy and programs) forms of care. Consistent with the socioecological

model, I will identify multilevel factors impacting quality of life and long-term health and identify strategies to reduce health inequities. Obtaining grounded insights on how disability amplifies existing inequalities is necessary to inform health, policy, and structural interventions to improve quality of life and long-term health for

people with disabilities. I propose two related aims: (1) to ethnographically investigate and describe experiences of acquired disability among those with disabilities, family caregivers, health and human service providers and policymakers and (2) to develop and verify a shared cultural model of disability describing the

range of barriers, facilitators, and opportunities to help rural Appalachians live well with disability. To achieve these aims, I will obtain rigorous training in rapid ethnographic assessment, concept mapping, culturally adapted interventions, and grant writing to support my growth as an independent health equity researcher. A

robust understanding of disability based on grounded experiences will inform future culturally adapted interventions to mitigate health inequities and improve the lives of people with disabilities and their families.