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Citation link: http://nbn-resolving.de/urn:nbn:de:gbv:46-00103326-15
00103326-1.pdf
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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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