Endre søk
RefereraExporteraLink to record
Permanent link

Direct link
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Annet format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annet språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf
Living with a hereditary disease: persons with muscular dystrophy and their next of kin.
Högskolan i Jönköping, Hälsohögskolan, HHJ, Avd. för omvårdnad. Högskolan i Jönköping, Hälsohögskolan, HHJ. Kvalitetsförbättringar, innovationer och ledarskap inom vård och socialt arbete.
2005 (engelsk)Inngår i: American Journal of Medical Genetics, ISSN 0148-7299, E-ISSN 1096-8628, Vol. 136A, nr 1, s. 17-24Artikkel i tidsskrift (Fagfellevurdert) Published
Abstract [en]

This qualitative study describes conceptions and experiences of the hereditary aspect of muscular dystrophy (MD) from both the patients' and the next of kin's perspective. Different diagnoses of MD are included: dystrophia myotonica, myopathia distalis tarda hereditaria, Becker MD, facioscapulohumeral MD, limb-girdle MD, Emery-Dreifuss and undetermined proximal MD (Duchenne MD is not included). Interviews were conducted with 46 persons with MD and 36 next of kin. The interviews were subjected to inductive content analysis. Only two in each group did not spontaneously mention anything related to the fact that MD is disease with dominant or recessive inheritance. It was found that heredity has a prominent place in the thoughts and feelings of the family. These thoughts were classified as Becoming aware of MD and its hereditary nature, looking into the pedigree, acquiring an understanding of MD, thoughts about genetic testing, interpreting the risk, whether to have children or not, feelings related to the future, and feelings of responsibility and guilt. Families with MD need medical information and the opportunity for genetic testing as well as support and counseling in coming to terms with living with a hereditary disease, whether or not that includes a decision to take a test.

sted, utgiver, år, opplag, sider
2005. Vol. 136A, nr 1, s. 17-24
Emneord [en]
Adult, Aged, Aged; 80 and over, Family Health, Female, Genetic Counseling/psychology, Genetic Screening/psychology, Health Education, Humans, Interviews, Male, Middle Aged, Muscular Dystrophies/*diagnosis/*genetics/psychology, Pedigree, Risk Factors, Sweden
HSV kategori
Identifikatorer
URN: urn:nbn:se:hj:diva-3673PubMedID: 15889411OAI: oai:DiVA.org:hj-3673DiVA, id: diva2:34493
Tilgjengelig fra: 2007-10-10 Laget: 2007-10-10 Sist oppdatert: 2017-12-12bibliografisk kontrollert

Open Access i DiVA

Fulltekst mangler i DiVA

Andre lenker

PubMedhttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=15889411&dopt=Citation

Person

Ahlström, Gerd

Søk i DiVA

Av forfatter/redaktør
Ahlström, Gerd
Av organisasjonen
I samme tidsskrift
American Journal of Medical Genetics

Søk utenfor DiVA

GoogleGoogle Scholar

pubmed
urn-nbn

Altmetric

pubmed
urn-nbn
Totalt: 206 treff
RefereraExporteraLink to record
Permanent link

Direct link
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Annet format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annet språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf