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Gender Consciousness: Understanding the Illness Experiences and Explanatory Models of Men and Women with ALS in Georgia

Carter, Chelsey Roxanne (2012)
Honors Thesis (100 pages)
Committee Chair / Thesis Adviser: Brown, Peter J
Committee Members: Armelagos, George ; Stolley, Karen ; Stutz, Aaron
Research Fields: Anthropology, Medical and Forensic
Keywords: illness narrative; chronic illness; gender
Program: College Honors Program, Anthropology
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Gender Consciousness: Understanding the Illness Experiences and Explanatory Models of Men and Women with ALS in Georgia

Narratives of illness, disability, mental disorders, genetic disorders, chronic conditions, dying and death play a key role in shaping our understanding of the human condition. In the past decades efforts have been made to better understand these anthropological illness narratives, with an increasing on chronic illness. This medical anthropological research project is a crosssectional study of the illness experience of men and women with amyotrophic lateral sclerosis, ALS. ALS presents a particular set of challenges for the construction of an illness narrative, as it has no known etiology, no treatment, and no cure. A critical medical anthropological approach is used to examine the limits and challenges of biomedicine through the lived experience of men and women with a visible and life-limiting chronic illness. The research aims were: 1) determine how health behaviors (with regard to terminal illness) vary between genders 2) identify the impact of gender on the attitudes of men and women with ALS related to family, emotional support, identity, and explanatory models 3) understand how individuals cope with an illness with no known etiology, no treatment and no cure. The study used nine participants, five men and four women living in Georgia. Qualitative and quantitative methods were used to collect data, including: semi-structured interviews, structured questionnaire including psychosocial instruments to assess coping style, and participant observation of support group meetings. Results identified both gendered and universal themes among individuals with ALS, and reflect various coping measures and health behaviors that emerge for men and women with ALS.

Table of Contents

Table of Contents -- Preface -- Chapter 1: Introduction/Background -- Introduction -- The Project -- Illness Narratives -- Gender and Illness -- Chronicity -- Disease vs. Illness -- Chapter 2: Literature Review of ALS -- History of ALS -- Symptoms of ALS -- Diagnosis/Etiology -- Chapter 3: Methodology -- Study Population -- Study Design -- Data Analysis -- Limitations -- Chapter 4: ALS Stories -- Demographics of Study Population -- Narratives -- Support Groups -- Brief COPE Questionnaire Results -- Chapter 5: Discussion -- Unique female experiences -- Unique male experiences -- Common experiences -- Explanations and factors affecting illness experiences -- Future Research -- Conclusion -- Bibliography


application/pdf Honors Thesis 100 pages (880.7 KB) [Access copy of Honors Thesis]
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