This proposed research seeks to study the evolution of hemophilia between 1948 and 1988, within the context of the history of health care in the United States. During this period, hemophilia progressed from an obscure genetic disease to a treatable chronic illness, around which a model national network of comprehensive care has been developed. This cost effective system of health care delivery is now being tested by HIV and AIDS, which the hemophilia population received as a result of technology gone awry. The blood products developed to enable hemophiliacs to function normally and to overcome past problems of crippling and pain, contained the virus which imposed the scourge of AIDS upon them. The experience of this community, a microcosm of heterosexual society, has relevance for society at large. Recording changes in provider-consumer relationships, providers' adjustments to altered responsibilities, and the comprehensive care model's strengths, adaptability, and problems in """"""""The AIDS Era,"""""""" will contribute to informing policy makers and program planners. The ethnographic approach to the study of the history of this community enriches a more traditional historical approach, relying solely on documentary analysis, by juxtaposing the subjective or """"""""emic"""""""" perspective, the insider's view on top of the """"""""etic,"""""""" or outsider's version of historical events. A total of thirty-seven individuals will be interviewed. Two groups of informants will be selected. The first group consists of twenty-seven key individuals who have participated in the shaping of events. They include representatives of the entire range of hemophilia treatment center providers, lay and staff leaders from the National Hemophilia Foundation, The World Federation of Hemophilia, government agencies, and the pharmaceutical industry. The World Federation of Hemophilia, government agencies, and the pharmaceutical industry. The second group of ten informants are hemophiliacs. They represent different age cohorts, levels of severity, and HIV statuses. They will be encouraged to relate oral histories. The interviewer will also mention events, themes, and issues introduced in the health care literature and by the other informants. The dissertation will have a chronological organizational format consisting of four major sections: Emerging from the Dismal Era, The Golden Era, The AIDS Era, and The Future. The ethnographic material will be interwoven with the information gleaned from documentary analysis of archival materials from the National Hemophilia foundation, Office of Maternal and Child Health, and the personal files of individuals who have """"""""institutional memories.""""""""

National Institute of Health (NIH)
Agency for Healthcare Research and Quality (AHRQ)
Small Research Grants (R03)
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Individual Award - Resnik, Susan G.
New York
United States
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