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Being kin of an adult person with muscular dystrophy
Örebro University, Department of Nursing and Caring Sciences.
Örebro University, Department of Nursing and Caring Sciences.
Örebro University, Department of Nursing and Caring Sciences.
(English)Manuscript (preprint) (Other academic)
National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-2821OAI: oai:DiVA.org:oru-2821DiVA, id: diva2:134668
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
Keyword
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

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Ahlström, GerdSunvisson, Helena

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CiteExportLink to record
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Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
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  • en-US
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More languages
Output format
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