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People with rare diseases - common experiences

Abstract

the study bulits on a contextual approach based on semi-structured face to face interviews. The most typical common experience was the feeling of being alone with problems and needs. A ’rare’ experience is that of falling outside the vast field of knowledge of the health and welfare professionals. One consequence of more individualisation and privatisation of services is the demand for self-decision in matters that concern the individual. To be able to act as a citizen vis-à-vis the general health and welfare service it is essential to be informed and to have knowledge. Most participants in this study receive support to act as citizens by their contact with a resource centre and a support organisation.

Category

Poster

Language

English

Author(s)

Affiliation

  • SINTEF Digital / Health Research

Presented at

The 5th EUROPEAN CONFERENCE FOR RARE DISEASES

Place

Krakow

Date

13.05.2010 - 15.05.2010

Organizer

Eurordis

Year

2010

View this publication at Cristin