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- Boström, Katrin, et al.
(author)
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Sickness impact in people with muscular dystrophy : a longitudinal study over 10 years.
- 2005
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In: Clinical Rehabilitation. - London : Edward Arnold. - 0269-2155 .- 1477-0873. ; 19:6, s. 686-694
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Journal article (peer-reviewed)abstract
- OBJECTIVE: To describe changes of function in terms of sickness impact over 10 years in adult patients with different types of muscular dystrophy. DESIGN: Patients with muscular dystrophy answered the Sickness Impact Profile and Self-report ADL questionnaires in 1991 and 2001. SETTING: The study population was identified in a comprehensive prevalence study in the county of Orebro, Sweden. SUBJECTS: The study group comprised 44 people grouped according to whether they had myotonic dystrophy or muscular dystrophy with proximal or distal muscles affected. MAIN MEASURES: Comparison was made between assessments of sickness impact in terms of function at the two time points. RESULTS: Most obvious deterioration over time was in activities of daily living that require finger and arm strength. Ambulation was significantly decreased in myotonic dystrophy and proximal muscular dystrophy. Those walking without assistive devices decreased from 91% to 52%, and the number with a disability pension increased from 36 to 55%. There was a relatively small influence with regard to psychosocial dysfunction assessed by the Sickness Impact Profile. CONCLUSIONS: This longitudinal study shows the deteriorating functions reported by patients with muscular dystrophy. This knowledge could be used to formulate new interventions in order to offer appropriate support and treatment to this patient group.
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| 3. |
- Lindner, Helen Y. N., 1967-, et al.
(author)
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Upper limb prosthetic outcome measures : Review and content comparison based on International Classification of Functioning, Disability and Health
- 2010
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In: Prosthetics and Orthotics International. - : Ovid Technologies (Wolters Kluwer Health). - 0309-3646 .- 1746-1553. ; 34:2, s. 109-128
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Research review (peer-reviewed)abstract
- The International Classification of Functioning, Disability and Health (ICF) has been recommended as a framework for evaluation of aspects of health. The aim of this study was to compare the contents of outcome measures for upper limb prosthesis users by using the ICF. Measurement focus and psychometric properties of these measures were also investigated. Outcome measures that used upper limb prosthesis users as subjects in their development and psychometric evaluations were selected. The psychometric studies (n - 14) were reviewed and scored and the items in the measures were linked to the ICF. One measure for all ages (ACMC), five paediatric measures (CAPP-FSI, CAPP-PSI, PUFI, UBET and UNB) and two adult measures (OPUS and TAPES) were selected. The concepts extracted (n - 393) were linked to 54 categories in the ICF. The ACMC, CAPP-FSI, UBET, UNB and PUFI measure categories mostly under the ICF component 'Activity and participation'. The TAPES and OPUS also measure ICF categories that describe the emotional and social status of a person. The main conclusion is that the use of a mixture of outcome measures would give a better picture on the aspects of our clients. Measures that focus on the social interaction in paediatric users are required.
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| 5. |
- Mundhenke, Lotta, et al.
(author)
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Experiences of Swedish children with disabilities : activities and social support in daily life
- 2010
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In: Scandinavian Journal of Occupational Therapy. - London, United Kingdom : Informa Healthcare. - 1103-8128 .- 1651-2014. ; 17:2, s. 130-9
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Journal article (peer-reviewed)abstract
- AIM: The purpose of this study was to describe experiences of everyday activities and social support in daily life in children with disabilities.METHOD: Interviews were conducted with 33 children (14 girls and 19 boys, aged 7-13 years) with physical, intellectual, or neuro-psychiatric disability. Interviews were analysed using qualitative content analysis.RESULTS: In many ways, the children described themselves as being like any other child or adolescent. Their narratives showed that they had developed strategies to cope with the consequences of their disability, both socially and in the performance of daily activities. The children received social support in everyday activities, mainly from their family and close friends. Meeting other children with the same disability supported opportunities for identification. However, their experiences of everyday activities were in many cases associated with sadness, especially when they could not participate in activities with their peers.CONCLUSIONS: According to the children's statements, it is important for people close to these children, both habilitation staff and others, to take responsibility for improving emotional, informative, and instrumental support in order to enable the children to perform and participate in everyday activities.
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| 6. |
- Nätterlund, Birgitta, et al.
(author)
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Activities of daily living and quality of life in persons with muscular dystrophy.
- 2001
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In: Journal of Rehabilitation Medicine. - : Medical Journals Sweden AB. - 1650-1977 .- 1651-2081. ; 33:5, s. 206-211
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Journal article (peer-reviewed)abstract
- The study concerns 77 adults with muscular dystrophy (mean age 49 years) in two counties in Sweden. The purpose was to investigate activities of daily living, quality of life and the relationship between these. Data collection was performed with "the Activity of Daily Living Staircase", "the Self-report Activity of Daily Living" and the Quality of Life Profile. The results indicated that over half of the subjects were dependent on others, chiefly in activities requiring mobility. Muscular dystrophy had mostly negative consequences, and nearly half stated that life would have offered more without it. Few significant diagnosis-related (no gender-related) differences emerged regarding activities of daily living and quality of life. Lower quality of life can only partly be explained by greater disability (r=0.30-0.54). Therefore quality of life as a measurement of rehabilitation outcomes might be based both on physical status, disability and psychosocial factors in terms of positive and negative consequences.
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| 9. |
- Nätterlund, Birgitta, et al.
(author)
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Disability, coping and quality of life in individuals with muscular dystrophy : a prospective study over five years.
- 2000
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In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 22:17, s. 776-785
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Journal article (peer-reviewed)abstract
- PURPOSE: The present study investigates progressive muscular dystrophy over a five year period. The purpose is twofold: to describe changes over time and to investigate relations between disability, coping and quality of life. METHOD: The study group comprised 45 adults (16 men and 29 women), with an average age of 44 years. All were assessed in 1991 and 1996, with the following instruments: the ADL staircase, the Self-report ADL, the Mental Adjustment to Cancer scale, the Sickness Impact Profile and the Psychosocial well-being questionnaire (Kaasa). RESULTS: Increasing disability was accompanied by an increase in dependence on others and a significant deterioration of health-related quality of life and with regard to 'Satisfaction'. The predominant type of coping was 'Fighting spirit', whilst 'Fatalism' showed the greatest decline over time. 'Ambulation' and the ADL staircase correlated with 'Physical index' on the SIP. Correlations between disability, coping and quality of life were moderate. The results can serve as a basis for planning and evaluation of recurring rehabilitation for persons with MD.
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