Doctoral Dissertation Research: Examining the Social and Medical Management of Disability Care in Rural Communities

Urgent medical care plays an invaluable role in saving the lives of people who experience a health emergency. However, less is known about how families manage and make decisions about longer-term healthcare needs of those who acquire disabilities after such health emergencies. This doctoral dissertation examines the social, political, and economic impacts of living with an acquired disability and identifies opportunities that could support people to live well with disabilities over the long-term. In addition to providing scientific training in empirical data collection and analysis for a graduate student in anthropology, research findings will be made available to people and families facing care needs from acquired disabilities, and with local organizational partners and state agencies to support new policies for healthcare and social support. It will also broaden the participation of scientists and communities in an EPSCoR jurisdiction. To investigate the relationship between disability, family care, and health decision-making the investigators will undertake long-term qualitative and community participatory research that includes participant observation, interviews, concept mapping, and photovoice. The researchers test for the impacts of multiple social, interpersonal, and systemic factors that drive decisions that people make for longer-term disability care. The research contributes to the anthropology of disability, medical anthropology of rural health systems, and the social science of biomedicine. This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.