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| 2. |
- Ahlström, Gerd, et al.
(author)
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A comprehensive rehabilitation programme tailored to the needs of adults with muscular dystrophy.
- 2006
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In: Clinical Rehabilitation. - : SAGE Publications. - 0269-2155 .- 1477-0873. ; 20:2, s. 132-141
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Journal article (peer-reviewed)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.
(author)
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A Psychometric Evaluation of the Family Collaboration Scale and an Investigation of How the Close Family of Frail Older Patients Perceive the Collaboration with Healthcare Professionals on Acute Medical Wards at Hospitals in Sweden
- 2022
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In: Healthcare. - : MDPI. - 2227-9032. ; 10:3
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Journal article (peer-reviewed)abstract
- The inclusion of family members in the acute care of older persons with complex needs results in better coordination of care and reduces the frequency and/or duration of rehospitalisation. Therefore, healthcare professionals need a tool to assess the collaboration with family members on acute hospital wards. The aims were to test the psychometric properties of the Swedish version of the Family Collaboration Scale (FCS), to investigate family members' perception of collaboration with healthcare professionals on acute medical wards in Sweden and to compare the data with the corresponding Danish results. Three hundred and sixty family members of frail patients aged 65 or older from 13 acute medical wards answered the FCS questionnaire. In addition to descriptive statistics, psychometric methods were applied. The internal consistency of the Swedish version of the FCS was excellent, and confirmatory factor analysis revealed that its factor structure was equivalent to that of the original Danish FCS. The respondents' ratings indicated better perceived collaboration than in the Danish case. Older age than 60 was associated with worse collaboration with healthcare professionals regarding Influence on discharge than younger respondents. Those with compulsory and health or nursing education showed better collaboration. The Swedish version of the FCS should be further evaluated for its retest reliability and as an outcome measure in intervention studies.
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| 5. |
- Ahlström, Gerd, et al.
(author)
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Ageing people with intellectual disabilities and the association between frailty factors and social care : A Swedish national register study
- 2022
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In: Journal of Intellectual Disabilities. - Thousand Oaks, CA : Sage Publications. - 1744-6295 .- 1744-6309. ; 26:4, s. 900-918
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Journal article (peer-reviewed)abstract
- The aim of this study was to describe the social care provided for different age groups of people with intellectual disability, 55 years or above, and to investigate the association between such care and frailty factors for those with diagnosed level of intellectual disabilities. Descriptive and logistic regression analyses were used. Commonest forms of social care among the 7936 people were Residential care, Daily activities and Contact person. Home help and Security alarm increased with age. The frailty factors significantly associated with increased social care were age, polypharmacy and severe levels of intellectual disabilities. Persons most likely to be in residential care were in the age group 65–79 with polypharmacy and severe disability. The results indicate a need for further research of how frailty factors are considered in social care and longstanding medication, especially then severe intellectual disability hinders communication. A national strategic plan for preventive interventions should be developed to ensure the best possible healthy ageing. © The Author(s) 2021.
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| 7. |
- Ahlström, Gerd, et al.
(author)
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Assessment of coping with muscular dystrophy : a methodological evaluation.
- 1994
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In: Journal of Advanced Nursing. - 0309-2402 .- 1365-2648. ; 20:2, s. 314-323
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Journal article (peer-reviewed)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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| 10. |
- Ahlström, Gerd, et al.
(author)
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Breaking up and a new beginning when one’s partner goes into a nursing home : An interview study
- 2021
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In: Healthcare. - : MDPI AG. - 2227-9032. ; 9:6
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Journal article (peer-reviewed)abstract
- In aging societies worldwide, spouses take on great responsibility for care when their partner continues to live at home. Nursing home placement occurs when the partner becomes too frail due to multimorbidity, and this will cause a change in the spouse’s life. This study aimed to explore the spouse’s experience of their partner’s move to a nursing home. Two interviews were conducted at 9-month intervals within the project entitled “Implementation of Knowledge-Based Palliative Care in Nursing Homes”. Thirteen spouses from both urban and rural areas were included, with an age-range of 60–86 years (median 72). Qualitative content analysis was performed. The main findings were captured in two themes: Breaking up of close coexistence and Towards a new form of daily life. The first encompassed processing loneliness, separation and grief, exhaustion, increased burden, and a sense of guilt. The second encompassed a sense of freedom, relief, acceptance, support and comfort. Professionals in both home care and nursing home care need to develop and provide a support programme conveying knowledge of the transition process to prevent poor quality of life and depression among the spouses. Such a programme should be adaptable to individual needs and should ideally be drawn up in consultation with both partners.
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| 11. |
- Ahlström, Gerd, et al.
(author)
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Collaboration and guidelines for the coordination of health care for frail older persons with intellectual disability : A national survey of nurses working in municipal care
- 2021
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In: Nursing Open. - : Wiley. - 2054-1058. ; 8:3, s. 1369-1379
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Journal article (peer-reviewed)abstract
- Aims: To describe and compare perceptions of collaboration between care providers on the part of three groups of Registered Nurses working in municipal care and having particular responsibility concerning the care of frail older people with intellectual disability (ID); and, furthermore, to investigate the presence of and compliance with guidelines for the coordination of care. Design: National survey study with cross-sectional design. Methods: Nurses (N = 110) with key positions concerning people with ID answered a national questionnaire about collaboration, guidelines and coordinated individual plans. Descriptive and comparative statistical analyses were applied. Results: The meetings on cooperation and coordination of interventions were attended most frequently by nurses, and least frequently by social workers. The nurses were overall satisfied with the collaboration but perceived shortcomings in the case of inpatient and outpatient psychiatric care. Only in about half of the meetings for making care plans participated the people with intellectual disability and next of kin.
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| 12. |
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| 13. |
- Ahlström, Gerd, et al.
(author)
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Coping with illness-related problems and quality of life in adult individuals with muscular dystrophy.
- 1996
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In: Journal of Psychosomatic Research. - 0022-3999 .- 1879-1360. ; 41:4, s. 365-376
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Journal article (peer-reviewed)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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| 14. |
- Ahlström, Gerd, et al.
(author)
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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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In: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 16:4, s. 368-375
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Journal article (peer-reviewed)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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| 18. |
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| 19. |
- Ahlström, Gerd
(author)
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Coping with Neuromuscular disease and the Implications for Interventions
- 2008
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In: 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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Conference paper (peer-reviewed)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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| 20. |
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| 21. |
- Ahlström, Gerd, et al.
(author)
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Disability and quality of life in individuals with muscular dystrophy.
- 1996
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In: Scandinavian Journal of Rehabilitation Medicine. - 0036-5505 .- 1940-2228. ; 28:3, s. 147-157
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Journal article (peer-reviewed)abstract
- In the county of Orebro, Sweden, 32 individuals with myotonic disorders and 25 with other types of muscular dystrophy were examined. Disability was assessed with functional tests and standardized observations of muscle function (mainly based on those proposed by Dr. Brooke), a new self-administered questionnaire regarding the Activities of Daily Living (ADL) and the ADL staircase (based on Katz ADL index). The results of the different tests of disability were highly correlated. The Sickness Impact Profile and the Kaasa test were used for assessing the quality of life, and no significant differences were found between the groups of muscular dystrophy. In an explanatory factor analysis three main factors of disability were found. The factors "walk and move" and "finger function" were fair to good associated with the quality of life. This study offers an approach for research on the consequences of muscular dystrophy using established as well as new methods.
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| 22. |
- Ahlström, Gerd, et al.
(author)
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Disability and quality of life in individuals with postpolio syndrome.
- 2000
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In: Disability and Rehabilitation. - 0963-8288 .- 1464-5165. ; 22:9, s. 416-422
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Journal article (peer-reviewed)abstract
- PURPOSE: The purpose of the study is to investigate disability and quality of life in individuals with the characteristic symptoms of postpolio syndrome. METHOD: Disability is assessed by means of the self-report activities of daily living instrument, and quality of life by means of Kaasa's questionnaire and the quality of life profile. RESULTS: The 39 subjects have on average lived with polio sequelae for 52 years. Their main difficulties are with moving, lifting and carrying. This means restricted mobility, sedentary activities and a need to prioritize. Half of them feel that polio has lessened their possibilities in life, and a quarter have still not accepted the limitations polio has involved. Nevertheless the majority report a high level of psychosocial well-being, and almost a quarter say that living with polio has meant personal development and strength. We found a significant correlation between on the one hand disability with regard to ambulation, arm strength and finger strength on the self-report ADL, and on the other hand the number of negative problems on the quality of life profile (0.33-0.45). CONCLUSION: The latter instrument needs further testing before its validity can be determined with certainty.
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| 23. |
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| 24. |
- Ahlström, Gerd, et al.
(author)
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Encounters in close care relations from the perspective of personal assistants working with persons with severe disablility.
- 2010
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In: Health & Social Care in the Community. - : Hindawi Limited. - 0966-0410 .- 1365-2524. ; 18:2, s. 180-188
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Journal article (peer-reviewed)abstract
- In Sweden adults with major and sustainable disabilities can be granted publicly financed support in the form of personal assistance after assessment and decision-making in accordance with government rules. The purpose of the present study was to explore more deeply the encounters in close care relations between personal assistants and disabled persons of working age, as well as the prerequisites for and obstacles to the success of such encounters, this from the perspective of the personal assistants. Thirty-two personal assistants (22- to 55-year old) who worked for 32 persons with serious neurological diseases living at home were interviewed. The transcribed unstructured interviews were qualitatively analysed using latent content analysis. The analyses resulted in five main themes: Perceptive awareness, Entering into the other's role, Mutuality, Handling the relationship and Personal difficulties facing the assistant. These themes illustrated that a prerequisite for the encounter's being meaningful is that the assistant should be able to observe and understand the unique needs of the disabled person. The assistant must furthermore be able to put herself/himself into the other person's position. It is also important that the personal chemistry between the assistant and the disabled person should be good. Being able to share feelings and interests with the functionally impaired person provides the assistant with positive emotional confirmation of a good relationship. A distressing dilemma the assistant faces is that of distinguishing between the working relationship and the personal friendship. In this borderline area are found experiences, feelings and events that the assistant may view as negative or even unacceptable. This study contributes to the understanding of the complexity underlying the daily community care of disabled persons with an extensive need for care and assistance.
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| 25. |
- Ahlström, Gerd, et al.
(author)
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Enjoying work or Burdened by it? : How personal Assistants Experience and Handle Stress at Work
- 2012
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In: Journal of Social Work in Disability & Rehabilitation. - : Routledge. - 1536-710X .- 1536-7118. ; 11:2, s. 112-127
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Journal article (peer-reviewed)abstract
- A personal assistant has to promote equality in living conditions for persons with severe disabilities. The aim of this study was to explore how personal assistants experience their work and what strategies they employ to alleviate work-related stress. Thirty personal assistants were interviewed and latent content analysis was performed. The findings regarding the experiences of work-related stress could be brought together under the theme of “difficulties of being in a subordinate position,” and those regarding management strategies could be brought together under the theme of “coming to terms with the work situation.” There is a need to empower personal assistants through training programs including tailored education, working communities, and coaching.
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