Cristin-resultat-ID: 907359
Sist endret: 10. februar 2012, 10:46
Resultat
Poster
2010

People with rare diseases - common experiences

Bidragsytere:
  • Lisbet Grut og
  • Marit Hoem Kvam

Presentasjon

Navn på arrangementet: The 5th EUROPEAN CONFERENCE FOR RARE DISEASES
Sted: Krakow
Dato fra: 13. mai 2010
Dato til: 15. mai 2010

Arrangør:

Arrangørnavn: Eurordis

Om resultatet

Poster
Publiseringsår: 2010

Beskrivelse Beskrivelse

Tittel

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.

Bidragsytere

Lisbet Grut

  • Tilknyttet:
    Forfatter
    ved Helse ved SINTEF AS

Marit Hoem Kvam

  • Tilknyttet:
    Forfatter
    ved Helse ved SINTEF AS
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