Living with Muscular Dystrophy: Illness Experience, Activities of Daily Living, Coping, Quality of Life and Rehabilitation

Nätterlund, Birgitta

doi:10.1080/110381201750464511

Cited by 6 publications

(12 citation statements)

References 93 publications

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“…They received the WCQ by mail and returned the completed questionnaire to one of the authors (GA). This group had been identified in connection with earlier studies (13, 19). Seven persons were excluded as they returned the questionnaire without answering the questions because they could not remember any specific situation related to MD as stressful.…”

Section: Muscular Dystrophymentioning

confidence: 69%

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Coping with illness‐related problems in persons with progressive muscular diseases: the Swedish version of the Ways of Coping Questionnaire

Ahlström¹,

Wenneberg²

2002

Scandinavian Caring Sciences

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One of the most widely used self-assessment inventories of coping is the Ways of Coping Questionnaire. The aims of the study were to describe coping with illness-related problems in persons with muscular diseases and to investigate the influence of demographic variables. Also, the reliability of the Swedish version of the Ways of Coping Questionnaire was to be evaluated. Forty-four persons with muscular dystrophy and 32 persons with postpolio syndrome, along with a comparison group of 214 students, completed the questionnaire. The findings of this study show that there are some different coping patterns in students as compared with persons with chronic disease. The coping strategy Distancing was used more and the strategy Accepting Responsibility used less frequently in the chronic disease groups and may be an expression of the inevitable physical limitations caused by the progressiveness of muscular dystrophy and postpolio syndrome. Furthermore, persons with muscular dystrophy also used less problem-focused coping in the form of Confrontive Coping and Planful Problem Solving when compared with the postpolio and student groups. In addition, women in the three groups employed the strategy of Seeking Social Support more often than did men. Regarding the psychometric properties of the Swedish version of the Ways of Coping Questionnaire, internal consistency was acceptable for the total score, but lower and not acceptable for several of the subscales. In the student group, but not in the chronic disease groups, there were low correlations between subscales, which indicate discriminative ability. More research is necessary to further investigate the reliability and validity of the Swedish version of the Ways of Coping Questionnaire before this instrument can be used routinely to assess coping patterns in patients with chronic disease.

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Section: Muscular Dystrophymentioning

confidence: 69%

“…This study is part of a research programme about progressive muscular diseases in Sweden (12–14). The findings of this programme show that persons with progressive muscular diseases are using many different strategies in order to cope with illness‐related stress (8, 12, 14).…”

Section: Introductionmentioning

confidence: 99%

Coping with illness‐related problems in persons with progressive muscular diseases: the Swedish version of the Ways of Coping Questionnaire

Ahlström¹,

Wenneberg²

2002

Scandinavian Caring Sciences

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“…The distribution and the severity of functional deficits determine the ADL problems (Nätterlund, 2001). In this study, patients with MD1 were included.…”

Section: Introductionmentioning

confidence: 99%

Effects of a hand training programme in five patients with myotonic dystrophy type 1

Aldehag

Jonsson

Ansved

2005

Occupation Therapy Intl

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The aim of this study was to evaluate hand function and self-rated occupational performance before and after specific hand training in five participants with myotonic dystrophy (MD) type 1. MD is the commonest of the muscular dystrophies with adult onset and is associated with muscle weakness, wasting and myotonia. Compensatory techniques and strategies are mostly offered as the only intervention therapy. In the present study, the participants were their own controls using pre- and post-test measures. Each participant was tested at intervals a total of nine times before and nine times after hand training. A hand-held myometer (Microfet2), Grippit, Purdue Pegboard and self-rated myotonia were used as outcome measures. Occupational performance was assessed pre- and post-test using the Canadian Occupational Performance Measurement (COPM) in which the participants rated their own performance and satisfaction in five self-chosen occupational performance areas. The participants performed hand training for a total of three months, three times per week using a specific resistance training programme including Theraputty, a silicone-based putty. Hand function was significantly increased and a positive change in self-rated occupational performance was noted after the training period. This study indicates that hand training has a positive effect on hand function, i.e. motor function and occupational performance. The present results need to be replicated in a controlled study including a larger number of patients and over a longer period of time.

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“…''It is only by their activities that people can demonstrate what they are, or what they hope to be'' [26, p. 18]. When an individual has the capacity to meet the challenges of his/her activities, the result can be an optimal state relating to health, well-being, and quality of life (22,24,27). The rhythm of daily life is structured by roles, habits, routines, time, and space (28Á30), and everyday activities can be viewed as ''essential in the life-long project of living one's life'' (29).…”

Section: Introductionmentioning

confidence: 98%

A new life with aphasia: everyday activities and social support

Nätterlund

2010

Scandinavian Journal of Occupational Therapy

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People who develop aphasia must adjust their lifestyles and learn to cope with the activity limitations that may follow from their disability. The purpose of this study was to describe aphasic individuals' experiences of everyday activities and social support in daily life. Interviews were conducted with 20 people with aphasia, and analysed with qualitative content analysis. The results show that everyday activities changed considerably with the onset of aphasia, and the participants were hindered from participating in activities by communication problems or physical disabilities. Aphasia led to the loss of friends and colleagues, and the interviewees often felt lonely. They generally received a lot of social support from close relatives, but support from the healthcare system was lacking. They need different kinds of social support to help them manage their aphasia and everyday activities and to improve their participation in society. Further studies are needed to improve our knowledge of everyday activity and social support for people with aphasia, and what it means to live with aphasia.

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Living with Muscular Dystrophy: Illness Experience, Activities of Daily Living, Coping, Quality of Life and Rehabilitation

Cited by 6 publications

References 93 publications

Coping with illness‐related problems in persons with progressive muscular diseases: the Swedish version of the Ways of Coping Questionnaire

Coping with illness‐related problems in persons with progressive muscular diseases: the Swedish version of the Ways of Coping Questionnaire

Effects of a hand training programme in five patients with myotonic dystrophy type 1

A new life with aphasia: everyday activities and social support

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