oru.sePublications
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
Quality of life in patients with muscular dystrophy and their next of kin
Örebro University, Department of Nursing and Caring Sciences.
2005 (English)In: International Journal of Rehabilitation Research, ISSN 0342-5282, E-ISSN 1473-5660, Vol. 28, no 2, p. 103-109Article in journal (Refereed) Published
Abstract [en]

The aims of this study were to investigate quality of life (QoL) among adult patients with muscular dystrophy (n=46) and their next of kin (n=36) and to investigate the influence of disease-related and demographic factors on QoL. The questionnaire 'Subjective estimation of quality of life' was used. The results show that patients had lower QoL than their next of kin regarding having no work or meaningful occupation, energy, self-assuredness, self-acceptance and emotional experiences. Age of onset of disease had an impact on QoL. The need for a ventilator had an influence only on assessment of energy. Patients without a partner assessed lower than those who had a partner. In the case of a person who is young and single the onset of muscular dystrophy reduces the likelihood of having a partner or children and affects personal economy negatively. Assessment of relationship to friends was lower among next of kin who provided daily help than among those who provided help once a week. There is a need for recurrent rehabilitation during life-long disabilities and a need to give particular support to those with early onset of disease, those who are single and those who are childless. It is also important to include the patient's close relations when giving rehabilitation.

Place, publisher, year, edition, pages
2005. Vol. 28, no 2, p. 103-109
National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-2822PubMedID: 15900179OAI: oai:DiVA.org:oru-2822DiVA, id: diva2:134669
Available from: 2005-05-04 Created: 2005-05-04 Last updated: 2018-01-13Bibliographically approved
In thesis
1. Living with deteriorating and hereditary disease: experiences over ten years of persons with muscular dystrophy and their next of kin
Open this publication in new window or tab >>Living with deteriorating and hereditary disease: experiences over ten years of persons with muscular dystrophy and their next of kin
2005 (English)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[sv]
Att leva med en progressiv och ärftlig sjukdom : erfarenheter utifrån ett tioårsperspektiv från personer med muskeldystrofi och deras närmaste anhörig
Abstract [en]

The overall aim of this thesis was to elucidate haw persona with muscular dystrophy (MD) and their next of kin experience and describe their daily lives over the last ten years. MD is a group of inherited disorders characterised by muscular weakness caused by muscle wasting. Both qualitative and quantitative methods were used. Forty-isx individuals with MD and 36 next of kin were interviewed (Studies I, III, IV). Both groups completed the questionnaire Subjective Quality of Life (SQoL), (Study V). Persons with MD also completed the questionnaires Sickness Impact Profile and Self-report ADL (Study II). The interviews were subjected to qualitative content analysis. The persons with MD described the change from being independent to being an individual in need of assistive devices and/or personal support to manage activities of every day life (StudyI). Besides muscular weakness persons with MD have hte strain it means to have a hereditary disease, which also affects the family (Study III). The deterioration during a decennium was primarily with regard to ambulation. The number of persons walking without assistive devices has decreased from 40 to 23 and that of those working has almost been halved, from 21 to 11 (Study II). Next of kin have a special vulnerability in form of an emotional and practical lonliness in addition to actual and anticipatory losses. The relationship was described as related to obligation and/or love. To have an orientation towards tasks (obligation) was linked to a feeling of being weighed down by demands, while having an orientation towards relationship (love) was linked to a feeling of quality in life (Study IV). The persons with MD scored lower on most items in the SQoL than the next of kin (Study V). Patients without a partner scored lower on QoL as a whole than those with a partner. Those with an early onset of disease scored lower on personal economy. Next of kin who gave daily help assessed their relationships to friends lower than those who gave weekly help (Study V). This thesis provides knowledge of the trajectory with MD over time on the basis of a ten-year follow up. It also broadens the knowledge of how the hereditary aspect is experienced both by those with MD and their next of kin. How the next of kin of adult persons with MD experience their situation is an issue that has been overlooked in previous research.

Place, publisher, year, edition, pages
Örebro: Örebro universitetsbibliotek, 2005. p. 88
Series
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 15
Keywords
Social sciences, muscular dystrophy, chronic disease, ten year follow up, next of kin, ICF, activity, sickness impact, hereditary aspects, illness related problems, quality of life, multimethod, content analysis
National Category
Social Sciences Social Work
Research subject
Disability Research
Identifiers
urn:nbn:se:oru:diva-112 (URN)91-7668-427-X (ISBN)
Public defence
2005-06-03, Wilandersalen, Universitetssjukhuset, Örebro, 13:00
Opponent
Supervisors
Available from: 2005-05-04 Created: 2005-05-04 Last updated: 2017-10-18Bibliographically approved

Open Access in DiVA

No full text in DiVA

PubMed
By organisation
Department of Nursing and Caring Sciences
In the same journal
International Journal of Rehabilitation Research
Social Sciences InterdisciplinaryNursing

Search outside of DiVA

GoogleGoogle Scholar

pubmed
urn-nbn

Altmetric score

pubmed
urn-nbn
Total: 85 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