Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
The illness experience of adult persons with muscular dystrophy.
Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. Quality improvements, innovations and leadership in health care and social work.
2001 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 23, no 17, p. 788-798Article in journal (Refereed) Published
Abstract [en]

PURPOSE: The purpose of the present study is to describe the illness experience of persons with muscular dystrophy, their experience of activities of daily living, and whether there are any differences in how different types of muscular dystrophy affect people's lives. METHOD: Fifty-eight subjects were interviewed on two occasions. The interviews with 15 subjects (five for each type of muscular dystrophy; proximal muscular dystrophy, myotonic muscular dystrophy, myopathia distalis tarda hereditaria) were subjected to inductive content analysis. The interviews were about experiences of the first symptoms, learning of the diagnosis, life in general from then to the present, managing daily living and thoughts about the future. RESULTS: After a deductive validation procedure the results were presented as three core narratives', one for each type of muscular dystrophy. The illness experience was mainly similar irrespective of type of muscular dystrophy. Learning of the incurable, progressive, hereditary disease was traumatic and the subjects hoped the diagnosis was wrong. They felt uncertain about the future, and were sad and worried about the consequences of a hereditary disease for their children. CONCLUSION: The results will enable rehabilitation staff to better understand the patient's need for psychosocial support.

Place, publisher, year, edition, pages
2001. Vol. 23, no 17, p. 788-798
Keywords [en]
Adaptation; Psychological, Adult, Disease Progression, Female, Humans, Male, Middle Aged, Muscular Dystrophies/*psychology, Quality of Life/psychology, Social Support
National Category
Nursing Nursing
Identifiers
URN: urn:nbn:se:hj:diva-3695DOI: 10.1080/09638280110065344PubMedID: 11762881OAI: oai:DiVA.org:hj-3695DiVA, id: diva2:34515
Available from: 2007-10-10 Created: 2007-10-10 Last updated: 2017-12-12Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full textPubMedhttp://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed&cmd=Retrieve&list_uids=11762881&dopt=Citation

Authority records

Ahlström, Gerd

Search in DiVA

By author/editor
Ahlström, Gerd
By organisation
HHJ, Dep. of Nursing ScienceHHJ. Quality improvements, innovations and leadership in health care and social work
In the same journal
Disability and Rehabilitation
NursingNursing

Search outside of DiVA

GoogleGoogle Scholar

doi
pubmed
urn-nbn

Altmetric score

doi
pubmed
urn-nbn
Total: 156 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf