oru.sePublikationer
Ändra sökning
RefereraExporteraLänk till posten
Permanent länk

Direktlänk
Referera
Referensformat
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Annat format
Fler format
Språk
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Annat språk
Fler språk
Utmatningsformat
  • html
  • text
  • asciidoc
  • rtf
Living with a chronic deteriorating disease: the trajectory with muscular dystrophy over ten years
Örebro universitet, Institutionen för vårdvetenskap och omsorg.
Örebro universitet, Institutionen för vårdvetenskap och omsorg.
2004 (Engelska)Ingår i: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 26, nr 23, s. 1388-1398Artikel i tidskrift (Refereegranskat) Published
Abstract [en]

Purpose: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. Methods: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) was used for categorization. Results: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. Conclusions: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.

Ort, förlag, år, upplaga, sidor
2004. Vol. 26, nr 23, s. 1388-1398
Nationell ämneskategori
Omvårdnad Tvärvetenskapliga studier inom samhällsvetenskap
Forskningsämne
Vårdvetenskap
Identifikatorer
URN: urn:nbn:se:oru:diva-2818DOI: 10.1080/0963-8280400000898OAI: oai:DiVA.org:oru-2818DiVA, id: diva2:134665
Tillgänglig från: 2005-05-04 Skapad: 2005-05-04 Senast uppdaterad: 2018-01-13Bibliografiskt granskad
Ingår i avhandling
1. Living with deteriorating and hereditary disease: experiences over ten years of persons with muscular dystrophy and their next of kin
Öppna denna publikation i ny flik eller fönster >>Living with deteriorating and hereditary disease: experiences over ten years of persons with muscular dystrophy and their next of kin
2005 (Engelska)Doktorsavhandling, sammanläggning (Övrigt vetenskapligt)
Alternativ titel[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.

Ort, förlag, år, upplaga, sidor
Örebro: Örebro universitetsbibliotek, 2005. s. 88
Serie
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 15
Nyckelord
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
Nationell ämneskategori
Samhällsvetenskap Socialt arbete
Forskningsämne
Handikappvetenskap
Identifikatorer
urn:nbn:se:oru:diva-112 (URN)91-7668-427-X (ISBN)
Disputation
2005-06-03, Wilandersalen, Universitetssjukhuset, Örebro, 13:00
Opponent
Handledare
Tillgänglig från: 2005-05-04 Skapad: 2005-05-04 Senast uppdaterad: 2017-10-18Bibliografiskt granskad

Open Access i DiVA

Fulltext saknas i DiVA

Övriga länkar

Förlagets fulltext

Personposter BETA

Ahlström, Gerd

Sök vidare i DiVA

Av författaren/redaktören
Ahlström, Gerd
Av organisationen
Institutionen för vårdvetenskap och omsorg
I samma tidskrift
Disability and Rehabilitation
OmvårdnadTvärvetenskapliga studier inom samhällsvetenskap

Sök vidare utanför DiVA

GoogleGoogle Scholar

doi
urn-nbn

Altmetricpoäng

doi
urn-nbn
Totalt: 110 träffar
RefereraExporteraLänk till posten
Permanent länk

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