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- Ahlström, Gerd, et al.
(författare)
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A comprehensive rehabilitation programme tailored to the needs of adults with muscular dystrophy.
- 2006
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Ingår i: Clinical Rehabilitation. - : SAGE Publications. - 0269-2155 .- 1477-0873. ; 20:2, s. 132-141
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: To assess if activities of daily living (ADL), coping and quality of life could be improved in adults with muscular dystrophy through a comprehensive rehabilitation programme. DESIGN: Quasi-experimental, controlled clinical study comparing patients with similar age and disease aspects. SETTING: Two different counties in Sweden, being either study or control setting. SUBJECTS: The study group comprised 37 adults (21 women, 16 men; mean age 50 years), while the control group comprised 39 people (25 women, 14 men; mean age 46 years). INTERVENTIONS: Four rehabilitation sessions tailored to different medical, physical and psychosocial needs of the patients, comprising a total of 10 days over a period of 18 months. MAIN MEASURES: ADL, the Mental Adjustment to Cancer Scale measuring coping strategies, the Sickness Impact Profile measuring health-related quality of life, the Hospital Anxiety and Depression Scale, and the Psychosocial Well-being Questionnaire. RESULTS: No significant differences were found between groups with regard to the outcome measures. There was increased dependence on others in ADL after 18 months in both groups, but it was more pronounced in the control group. Furthermore, a clear trend was observed in the data with regard to coping patterns, the control group using more coping strategies such as 'Helplessness/hopelessness' (P= 0.057), 'Anxious preoccupation' (P = 0.085) and 'Fatalistic' (P= 0.073) when being compared to the study group. CONCLUSIONS: No apparent effects on ADL were found from the rehabilitation programme, although there was a tendency of reduction of maladaptive coping patterns in the study group. This initial study may provide the rationale and basis for a randomized controlled trial.
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| 4. |
- Ahlström, Gerd, et al.
(författare)
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Assessment of coping with muscular dystrophy : a methodological evaluation.
- 1994
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Ingår i: Journal of Advanced Nursing. - 0309-2402 .- 1365-2648. ; 20:2, s. 314-323
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Tidskriftsartikel (refereegranskat)abstract
- There is no published research on coping with muscular dystrophy among adults. In the present study, two questionnaires, the Reaction to the Diagnosis of Cancer Questionnaire (RDCQ) and the Mental Adjustment to Cancer scale (MAC), were modified in order to measure coping with muscular dystrophy (MD). A total of 60 people (16-64 years) with diagnosed MD answered the questionnaires in two interviews including semi-structured questions. The replies to these questions were analysed by two independent judges on the basis of the RDCQ and MAC categories for coping. The purpose was twofold: to investigate if cancer-coping categories could be used for the classification of interview answers concerning coping with MD, and to gain knowledge about specific coping with MD. Analysis indicated that 82% of replies to semi-structured questions concerned with emotion/appraisal-focused coping with MD can be described by means of RDCQ and MAC categories. Eight new categories were developed to classify the remaining 18%: Anticipation, Creation of new life values, Minimization, Establishment of control over everyday life, Secretiveness, Fear, Social comparison and Coping with heredity. In addition, 997 replies were classified to represent problem-focused coping. The judges reached good agreement with respect to the proportions of replies in the respective coping categories. However, kappa (kappa) values were within the range of fair to good agreement.
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| 6. |
- Ahlström, Gerd, et al.
(författare)
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Coping with illness-related problems and quality of life in adult individuals with muscular dystrophy.
- 1996
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Ingår i: Journal of Psychosomatic Research. - 0022-3999 .- 1879-1360. ; 41:4, s. 365-376
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Tidskriftsartikel (refereegranskat)abstract
- Illness-related problems and coping were examined in 60 individuals with muscular dystrophy (MD) identified in a population survey of the county of Orebro, Sweden. In addition, the extent to which coping is related to quality of life (QoL) was investigated as was the impact of impairment and disability on the relation between coping and QoL. Emotion/appraisal-focused coping was utilized by respondents more than twice as often as problem-focused coping. High QoL was significantly correlated to "Stoic acceptance" and "Tried alternative treatment." Low QoL was associated with "Helpless/hopeless," "Anxious preoccupation," "Minimization," "Social comparison," "Establishment of control over everyday life," "Performs the task with the aid of an appliance" and "Accepts help or leaves it to others." When measures of impairment and disability were included in the analysis, the impact of these measures explained the association between coping and physical QoL by 16% to 43%.
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| 7. |
- Ahlström, Gerd, et al.
(författare)
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Coping with illness-related problems in persons with progressive muscular diseases : the Swedish version of the Ways of Coping Questionnaire.
- 2002
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 16:4, s. 368-375
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Tidskriftsartikel (refereegranskat)abstract
- 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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| 10. |
- Ahlström, Gerd
(författare)
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Coping with Neuromuscular disease and the Implications for Interventions
- 2008
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Ingår i: The First International Symposium on Psychosocial Aspects of Neuromuscular Disorders. - Bilbao, June 20-21 2008 : University of Deusto, Bilbao. ; , s. 1-
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Konferensbidrag (refereegranskat)abstract
- Coping with Neuromuscular disease and the Implications for Interventions The lecture is based on results from three theses and about 25 scientifically articles about the plight of the patient with muscular dystrophy (MD), and the patients’ ways of coping with illness-related problems from a psychosocial perspective. MD is a group of inherited disorders characterised by muscular weakness caused by muscle wasting. Three subgroups are distinguished in our research: one group with different types of proximal MD and the other two groups characterized chiefly by distal weakness. The research was to elucidate how persons with muscular dystrophy experience their everyday life over a ten years period. The research includes four data collections with qualitative and quantitative methods. The data was selected in three different county councils in Sweden. 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. Besides muscular weakness the persons have the strain it means to have a hereditary disease. The deterioration in a decennium was mainly with regard to ambulation. The number of persons walking without assistive devices and working has almost been halved. They experienced periods of sorrow due to losses of independence, control, status and social roles and the loss of one’s identity as a healthy person. The sorrow connecting with repeated losses are in the literature designate as chronic or episodic sorrow. Also, in the lecture the patients’ illness trajectory were described by a model of Sullivan (1994) into four dimensions in order to increase the understanding of what it means to live with muscular dystrophy. The aim of interventions is to support the patient’s appropriate ways of coping as Problem-focused coping/Searching for a solution, Fighting spirit/Struggling, Re-appraising of life values, Maintaining hope, Social comparison, Laughing and joking and Caring about self.
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