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MA/PhD Theses Abstracts of Current Students & Alumni |
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Rosenberg, Deborah M. 1999. A Study of Adults with Congenital Heart Disease.
Abstract:There are approximately one million adults in the United States with congenital heart disease, a population that is expected to increase (Sommerville, et al. 1991). Extant data on social and long-term medical outcomes of this population are limited. This study is an investigation of the functional abilities of some adults with congenital heart disease in the state of Florida. The major focus of the research is on employment as a measure of functional level. The study methodology included qualitative and quantitative data collection. Twenty semi-structured interviews ere conducted with adults with congenital heart disease from the Tampa General Hospital at the University of South Florida Medical Center. The interview narratives were analyzed for beliefs regarding illness and disability. The information gathered was used to construct a survey instrument used with the study group. Surveys were mailed to ACHD patients from three medical centers within the state: Tampa, Orlando, and Jacksonville. Seventy-three persons responded to the survey; the data collected constituted the quantitative aspect of the study and were analyzed by statistical methods (zI test, T-test, and Poisson's test). Results obtained indicate that members of the sample were similar to the general US population in terms of marital status and ethnicity, rates of employment, and health insurance coverage. Members of the sample, however, had significantly higher rates of post-secondary education. Additionally, forty-five percent of the sample experienced fatigue, but only twenty-five percent reported missing work or leisure activities because of their heart defect, as they did not consider disability to constitute a reason to miss work the way illness did. Recommendations made were to: 1) educate physicians and patients about the effects of fatigue in this sample and 2) allow disabled persons to keep government sponsored health insurance, as ways of enabling them to enter or re-enter the work force; 3) implement a national database of congenital heart disease patients to allow data collection of the population as it grows; 4) conduct further research into disabled populations attitudes regarding the differences between illness and disability.
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