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Quality of life in patients with muscular dystrophy and their next of kin
Örebro universitet, Institutionen för vårdvetenskap och omsorg.
2005 (engelsk)Inngår i: International Journal of Rehabilitation Research, ISSN 0342-5282, E-ISSN 1473-5660, Vol. 28, nr 2, s. 103-109Artikkel i tidsskrift (Fagfellevurdert) 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.

sted, utgiver, år, opplag, sider
2005. Vol. 28, nr 2, s. 103-109
HSV kategori
Forskningsprogram
Vårdvetenskap
Identifikatorer
URN: urn:nbn:se:oru:diva-2822PubMedID: 15900179OAI: oai:DiVA.org:oru-2822DiVA, id: diva2:134669
Tilgjengelig fra: 2005-05-04 Laget: 2005-05-04 Sist oppdatert: 2018-01-13bibliografisk kontrollert
Inngår i avhandling
1. Living with deteriorating and hereditary disease: experiences over ten years of persons with muscular dystrophy and their next of kin
Åpne denne publikasjonen i ny fane eller vindu >>Living with deteriorating and hereditary disease: experiences over ten years of persons with muscular dystrophy and their next of kin
2005 (engelsk)Doktoravhandling, med artikler (Annet vitenskapelig)
Alternativ tittel[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.

sted, utgiver, år, opplag, sider
Örebro: Örebro universitetsbibliotek, 2005. s. 88
Serie
Studies from The Swedish Institute for Disability Research, ISSN 1650-1128 ; 15
Emneord
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
HSV kategori
Forskningsprogram
Handikappvetenskap
Identifikatorer
urn:nbn:se:oru:diva-112 (URN)91-7668-427-X (ISBN)
Disputas
2005-06-03, Wilandersalen, Universitetssjukhuset, Örebro, 13:00
Opponent
Veileder
Tilgjengelig fra: 2005-05-04 Laget: 2005-05-04 Sist oppdatert: 2017-10-18bibliografisk kontrollert

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