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People with rare diseases - common experiences

Sammendrag

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.

Kategori

Poster

Språk

Engelsk

Forfatter(e)

Institusjon(er)

  • SINTEF Digital / Helse

Presentert på

The 5th EUROPEAN CONFERENCE FOR RARE DISEASES

Sted

Krakow

Dato

13.05.2010 - 15.05.2010

Arrangør

Eurordis

År

2010

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