Year of Publication

2018

Degree Name

Doctor of Philosophy (PhD)

Document Type

Doctoral Dissertation

College

Arts and Sciences

Department

Anthropology

First Advisor

Dr. Mary Anglin

Abstract

This medical anthropology dissertation is an intersectional study of the illness experiences of African-American women living with the chronic autoimmune syndrome systemic lupus erythematosus (SLE), commonly known as lupus. Research was conducted in Memphis, Tennessee from 2013 to 2015, with the aim of examining the healthcare resources available to working poor and working class women using public sector healthcare programs to meet their primary care needs. This project focuses on resources available through Tennessee’s privatized public sector healthcare system, TennCare, during the first phases of the Patient Protection and Affordable Care Act (ACA). A critical medical anthropological analysis is used to examine chronically ill women’s survival strategies regarding their daily health and well-being. The objectives of this research were to: 1) understand what factors contribute to poor women’s ability to access healthcare resources, 2) explore how shared illness experiences act as a form of community building, and 3) document how communities of color use illness narratives as a way to address institutionalized racism in the United States. The research areas included: the limits of biomedical objectivity; diagnostic timeline in relation to self-reported medical history; effects of the relationship between socio-economic circumstance and access to consistent healthcare resources, including primary and acute care, as well as access to pharmaceutical interventions; and the role of non-medical support networks, including personal support networks, illness specific support groups, and faith based organizations. Qualitative methods were used to collect data. Methods included: participant observation in support groups, personal homes, and faith based organizations, semi-structured group interviews, and open-ended individual interviews. Fifty-one women living with clinically diagnosed lupus or undiagnosed lupus-like symptoms participated in individual interviews. Additionally twenty-one healthcare workers, including social workers, Medicaid caseworkers, and clinic support staff were interviewed in order to contextualize current state and local health programs and proposed changes to federal and state healthcare policy.

Digital Object Identifier (DOI)

https://doi.org/10.13023/ETD.2018.199

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