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Selbsthilfeorganisationen für seltene Erkrankungen und Gesundheitsversorgung: Gesundheitspolitische Erwartungen und Selbsthilferealität
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Other Titles: | Self-help organizations in the field of rare diseases and healthcare: The expectations of health policy und the reality of self-help | Authors: | Jagusch, Frank | Supervisor: | Müller, Rainer | 1. Expert: | Müller, Rainer | 2. Expert: | Braun, Bernard | Abstract: | Health policy expects self-help associations to make contributions to the improvement of the healthcare sector. The pilot study has explored the degree of reality of these expectations in a sample of five self-help organizations in the field of rare diseases. The study reveals that the expectations are fulfilled only in part. Self-help organizations enrich the healthcare sector with two specific qualities: their members operate with the special competencies of affected people and they have established a long-lasting cooperation with voluntary professionals. They are often a great help to the people contacting them directly, but, for a number of reasons, their supporting measures are reaching only a part of all affected people. The activities in the field of social participation have to cope with a lack of proper activists. They are able to pursue single projects successfully, but they are facing great problems in mastering the whole agenda of social participation. |
Keywords: | healthcare sector, self-helf association, self-help organization, social participation, rare disease | Issue Date: | 4-Mar-2013 | Type: | Dissertation | URN: | urn:nbn:de:gbv:46-00103326-15 | Institution: | Universität Bremen | Faculty: | FB11 Human- und Gesundheitswissenschaften |
Appears in Collections: | Dissertationen |
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