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Cristin-resultat-ID:
907359
Sist endret:
10. februar 2012, 10:46
Resultat
Poster
2010
People with rare diseases - common experiences
Lisbet Grut
og
Marit Hoem Kvam
Presentasjon
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
Om resultatet
Poster
Publiseringsår: 2010
Beskrivelse
Beskrivelse
Engelsk
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.
Vis
fullstendig beskrivelse
Bidragsytere
Bidragsytere
Lisbet Grut
Forfatter
ved Helse ved SINTEF AS
Marit Hoem Kvam
Forfatter
ved Helse ved SINTEF AS
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