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  • 1.
    Abbott, Allan
    et al.
    Department of Physical Therapy, Karolinska University Hospital, Stockholm, Sweden; Department of Clinical Science, Intervention and Technology, Division of Orthopaedics, Karolinska University Hospital, Karolinska Institute, Stockholm , Sweden.
    Hedlund, Rune
    Department of Orthopaedics, Institute for Clinical Science, University of Gothenburg, Gothenburg, Sweden.
    Tyni-Lenné, Raija
    Department of Physical Therapy, Karolinska University Hospital, Stockholm, Sweden.
    Patient’s experience post-lumbar fusion regarding back problems, recovery and expectations in terms of the international classification of functioning, disability and health.2011In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 33, no 15-16, p. 1399-1408Article in journal (Refereed)
    Abstract [en]

    PURPOSE:

    To describe within the context of the International Classification of Functioning, Disability and Health (ICF), patient's experiences post-lumber fusion regarding back problems, recovery and expectations of rehabilitation and to contrast with the content of outcome measures and the ICF low back pain (LBP) core sets.

    METHODS:

    The study has a cross-sectional and retrospective design and involves 20 lumbar fusion patients. Using the ICF, qualitative content analysis of semi-structured interviews 3-6 months post-surgery was performed. This was compared with the ICF related content of the Oswestry Disability Index (ODI), Medical Outcome Study Short Form 36 (SF-36), European Quality of Life Questionnaire (EQ5D) and the ICF LBP core sets.

    RESULTS:

    Patient's experiences were most frequently linked to psychological, sensory, neuromusculoskeletal and movement related body function chapters of the ICF. The most frequently linked categories of activity and participation were mobility, domestic activities, family relationships, work, recreation and leisure. Environmental factors frequently linked were the use of analgesics, walking aids, family support, social security systems, health care systems and labour market employment services.

    CONCLUSIONS:

    This study highlights important ICF related aspects of patient's experiences post-lumber fusion. The use of the comprehensive ICF core sets is recommended in conjunction with ODI, SF-36 and the EQ5D for a broader analysis of patient outcomes post-lumbar fusion.

  • 2. Adolfsson, Margareta
    et al.
    Granlund, Mats
    Pless, Mia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Disability and Habilitation.
    Professionals' views of children's everyday life situations and the relation to participation2012In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 34, no 7, p. 581-592Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim was to determine professionals' views of everyday life situations (ELS) of importance for children and to explore how ELS correlate with the construct "Participation". This study was part of a larger work to develop a structured tool with code sets to identify child participation and support children with disabilities to describe what matters most for them in intervention planning.

    Method: The study had a concurrent mixed methods design. Information from one open-ended question and questionnaires were linked to the ICF-CY component Activities and Participation. Two concurrent data sets were compared.

    Results: Proposed ELS were distributed across ICF-CY categories from low to high level of complexity and context specificity. The correlation with participation became stronger for the later chapters of the component (d7-d9). Differences between respondents due to working field, country, and children's ages were explored. Acts and tasks seemed most important for the youngest children, whereas ELS shifted towards societal involvement for adolescents.

    Conclusion: Eleven categories related to ICF-CY chapters d3-d9 emerged as ELS. Two age groups (infants/preschoolers and adolescents) are required to develop code sets for the new tool. The results need triangulation with other concurrent studies to provide corroborating evidence and add a family perspective.

  • 3.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, Mia
    Uppsala universitet.
    Professionals' views of children's everyday life situations and the relation to participation2012In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 34, no 7, p. 581-592Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim was to determine professionals’ views of everyday life situations (ELS) of importance for children and to explore how ELS correlate with the construct ‘Participation’. This study was part of a larger work to develop a structured tool with code sets to identify child participation and support children with disabilities to describe what matters most for them in intervention planning.

    Method: The study had a concurrent mixed methods design. Information from one open-ended question and questionnaires were linked to the ICF-CY component Activities and Participation. Two concurrent data sets were compared.

    Results: Proposed ELS were distributed across ICF-CY categories from low to high level of complexity and context specificity. The correlation with participation became stronger for the later chapters of the component (d7-d9). Differences between respondents due to working field, country, and children’s ages were explored. Acts and tasks seemed most important for the youngest children whereas ELS shifted towards societal involvement for adolescents.

    Conclusion: Eleven categories related to ICF-CY chapters d3-d9 emerged as ELS. Two age groups (infants/preschoolers and adolescents) are required to develop code sets for the new tool. The results need triangulation with other concurrent studies to provide corroborating evidence and add a family perspective.

  • 4.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Johnson, Ensa
    Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa.
    Nilsson, Stefan
    Jönköping University, School of Health and Welfare, HHJ. CHILD. University of Gothenburg, Sweden.
    Pain management for children with cerebral palsy in school settings in two cultures: Action and reaction approaches2018In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 18, p. 2152-2162Article in journal (Refereed)
    Abstract [en]

    Background: Children with cerebral palsy (CP) face particular challenges, e.g. daily pain that threaten their participation in school activities. This study focuses on how teachers, personal assistants, and clinicians in two countries with different cultural prerequisites, Sweden and South Africa, manage the pain of children in school settings.

    Method: Participants’ statements collected in focus groups were analysed using a directed qualitative content analysis framed by a Frequency of attendance-Intensity of involvement model, which was modified into a Knowing-Doing model.

    Results: Findings indicated that pain management focused more on children’s attendance in the classroom than on their involvement, and a difference between countries in terms of action-versus-reaction approaches. Swedish participants reported action strategies to prevent pain whereas South African participants primarily discussed interventions when observing a child in pain.

    Conclusion: Differences might be due to school- and healthcare systems. To provide effective support when children with CP are in pain in school settings, an action-and-reaction approach would be optimal and the use of alternative and augmentative communication strategies would help to communicate children’s pain. As prevention of pain is desired, structured surveillance and treatment programs are recommended along with trustful collaboration with parents and access to “hands-on” pain management when needed.

  • 5.
    Adolfsson, Margareta
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Malmqvist, Johan
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, Mia
    Uppsala universitet.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Behavioural Science and Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Identifying Child Functioning from an ICF-CY Perspective: Everyday Life Situations Explored in Measures of Participation2011In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 33, no 13-14, p. 1230-1244Article in journal (Refereed)
    Abstract [en]

    Purpose. This study was part of a larger work to develop an authentic measure consisting of code sets for self- or proxy-report of child participation. The aim was to identify common everyday life situations of children and youth based on measures of participation.

    Method. The study was descriptive in nature and involved several stages: systematic search of literature to find articles presenting measures for children and youth with disabilities, identifying measures in selected articles, linking items in included measures to the ICF-CY, analysing content in measures presented as performance and participation and identifying aggregations of ICF-CY codes across these measures.

    Results. A large number of measures for children and youth with disabilities were identified but only 12 fulfilled the inclusion criteria. A slight distinction in content and age appropriateness appeared. Measures presented as performance covered all the ICF-CY Activities and Participation chapters, whereas measures presented as participation covered five of nine chapters. Three common everyday life situations emerged from the measures: Moving around, Engagement in play and Recreation and leisure.

    Conclusion. Only a small number of life situations for children and youth emerged from items in selected measures, thus, other sources are needed to identify more everyday life situations.

  • 6.
    Adolfsson, Margareta
    et al.
    Högskolan för lärande och kommunikation, Högskolan i Jönköping.
    Malmqvist, Johan
    Högskolan för lärande och kommunikation, Högskolan i Jönköping.
    Pless, Mia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Research in Habilitation and Disability.
    Granuld, Mats
    Identifying child functioning from an ICF-CY perspective: everyday life situations explored in measures of participation2011In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 33, no 13-14, p. 1230-1244Article in journal (Refereed)
    Abstract [en]

    Purpose. This study was part of a larger work to develop an authentic measure consisting of code sets for self- or proxy-report of child participation. The aim was to identify common everyday life situations of children and youth based on measures of participation.

    Method. The study was descriptive in nature and involved several stages: systematic search of literature to find articles presenting measures for children and youth with disabilities, identifying measures in selected articles, linking items in included measures to the ICF-CY, analysing content in measures presented as performance and participation and identifying aggregations of ICF-CY codes across these measures.

    Results. A large number of measures for children and youth with disabilities were identified but only 12 fulfilled the inclusion criteria. A slight distinction in content and age appropriateness appeared. Measures presented as performance covered all the ICF-CY Activities and Participation chapters, whereas measures presented as participation covered five of nine chapters. Three common everyday life situations emerged from the measures: Moving around, Engagement in play and Recreation and leisure.

    Conclusion. Only a small number of life situations for children and youth emerged from items in selected measures, thus, other sources are needed to identify more everyday life situations.

  • 7.
    Ahlgren, Christina
    et al.
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Physiotherapy. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Fjellman-Wiklund, Anncristine
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Physiotherapy.
    Hamberg, Katarina
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine. Umeå University, Faculty of Social Sciences, Umeå Centre for Gender Studies (UCGS).
    Johansson, Eva E
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Stålnacke, Britt-Marie
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Rehabilitation Medicine.
    The meanings given to gender in studies on multimodal rehabilitation for patients with chronic musculoskeletal pain: a literature review2016In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 38, no 23, p. 2255-2270Article, review/survey (Refereed)
    Abstract [en]

    Purpose: The purpose of this study is to assess and describe the meanings given to "gender" in scientific publications that evaluate multidisciplinary, interdisciplinary or multimodal rehabilitation for patients with chronic musculoskeletal pain.

    Method: A systematic literature search for papers evaluating multimodal rehabilitation was conducted. The PubMed and EBSCO databases were searched from 1995 to 2015. Two or three researchers independently read each paper, performed a quality assessment and coded meanings of gender using qualitative content analysis.

    Results: Twenty-seven papers were included in the review. Gender was used very differently in the MMR studies investigated but primarily it referred to factual differences between men and women. Only one paper provided a definition of the concept of gender and how it had been used in that study. In the content analysis, the meaning of gender formed three categories: "Gender as a factual difference", "The man is the ideal" and "Gender as a result of social role expectations".

    Conclusions: The meaning of the concept of gender in multimodal rehabilitation is undefined and needs to be developed further. The way the concept is used should be defined in the design and evaluation of multimodal rehabilitation in future studies.

    Implications for rehabilitation

    Healthcare professionals should reflect on gender relations in encounters with patients, selection of patients into rehabilitation programs and design of programs. In rehabilitation for chronic pain the patients' social circumstances and cultural context should be given the same consideration as biological sex and pain symptoms.

  • 8.
    Ahlstrand, Inger
    et al.
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Björk, Mathilda
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. Jönköping University, School of Health and Welfare, HHJ. ADULT.
    Thyberg, Ingrid
    AIR/Rheumatology Unit, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linköping University Hospital, Linköping, Sweden.
    Börsbo, Björn
    Rehabilitation Medicine, IKE, Department of Clinical and Experimental Medicine, Faculty of Health Sciences, Linköping University, Sweden.
    Falkmer, Torbjörn
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Rehabilitation. School of Occupational Therapy, La Trobe University, Melbourne, VIC, Australia.
    Pain and Daily Activities in Rheumatoid Arthritis2012In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 34, no 15, p. 1245-1253Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe experiences of pain and its relationship to daily activities in people with rheumatoid arthritis (RA). Method. Seven semi-structured focus group discussions were conducted with 33 men and women of different ages with RA. Data were analysed with content analysis. Results. Pain affected everyday life and may be a barrier to perform valued activities. Regarding the impact of pain on participation and independence, personal factors and the social environment were found to be important. It could be a struggle to find the right activity balance, since it was easy to be overactive, triggering subsequent elevation of pain levels. However, the participants also described activities as a mediator of pain and a distraction from it.Conclusion. The relationship between pain and daily activities in RA was complex. Pain as an impairment was expressed to be related to activity limitations and participation restrictions, as well as to contextual factors. These findings highlight the clinical importance of paying attention to the complexity of pain and its relation to daily activities and participation.

  • 9.
    Ahlstrand, Inger
    et al.
    ADULT, HHJ, Hälsohögskolan, Högskolan i Jönköping.
    Björk, Mathilda
    Avd. för rehabilitering, HHJ, Hälsohögskolan, Högskolan i Jönköping.
    Thyberg, Ingrid
    Linköping University, Department of Medical and Health Sciences, Rehabilitation Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Center, Department of Rheumatology.
    Börsbo, Björn
    Linköping University, Department of Medical and Health Sciences, Rehabilitation Medicine. Linköping University, Faculty of Health Sciences.
    Falkmer, Torbjörn
    Linköping University, Department of Medical and Health Sciences, Rehabilitation Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Habilitation in Central County.
    Pain and daily activities in Rheumatoid Arthritis2012In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 34, no 15, p. 1245-1253Article in journal (Refereed)
    Abstract [en]

    Aim: The aim of this study was to describe experiences of pain and its relationship to daily activities in people with rheumatoid arthritis (RA). Method: Seven semi-structured focus group discussions were conducted with 33 men and women of different ages with RA. Data were analysed with content analysis. Results: Pain affected everyday life and may be a barrier to perform valued activities. Regarding the impact of pain on participation and independence, personal factors and the social environment were found to be important. It could be a struggle to find the right activity balance, since it was easy to be overactive, triggering subsequent elevation of pain levels. However, the participants also described activities as a mediator of pain and a distraction from it. Conclusion: The relationship between pain and daily activities in RA was complex. Pain as an impairment was expressed to be related to activity limitations and participation restrictions, as well as to contextual factors. These findings highlight the clinical importance of paying attention to the complexity of pain and its relation to daily activities and participation.

  • 10.
    Ahlström, Gerd
    et al.
    Jönköping University, School of Health Science, HHJ, Dep. of Nursing Science. Jönköping University, School of Health Science, HHJ. Quality improvements, innovations and leadership in health care and social work.
    Karlsson, Ulf
    Disability and quality of life in individuals with postpolio syndrome.2000In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 22, no 9, p. 416-422Article in journal (Refereed)
    Abstract [en]

    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.

  • 11.
    Aho, Anna Carin
    et al.
    Malmo Univ, Sweden.
    Hultsjö, Sally
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Cty Hosp Ryhov, Sweden.
    Hjelm, Katarina
    Uppsala Univ, Sweden.
    Perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support and using a wheelchair: an interview study2019In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 41, no 19, p. 2289-2298Article in journal (Refereed)
    Abstract [en]

    Purpose: To describe perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support to manage daily life and using a wheelchair for ambulation, from the affected young adults and their parents perspectives. Method: A qualitative and descriptive study design was used. Semi-structured interviews were held with 14 young adults diagnosed with recessive limb-girdle muscular dystrophy and 19 parents. Phenomenography was used for data analysis. Results: The diagnosis was described as being a shock and difficult to comprehend but also as a relief and a tool for information. Beginning to use a wheelchair was perceived to be mentally difficult but it also provided freedom. New ways of living involved physical, emotional, practical, and social difficulties as well as experiences of learning to adapt to the disease. The transition was overshadowed by concern about disease progression and influenced by facilitating factors, which were young adult being seen as a person; supportive family and friends; mobilized internal resources; meaningful daily activities; adapted environment; and professional support. Conclusions: The different perceptions expressed in this study highlight the importance of identifying personal perceptions and needs in order to optimize support provided by healthcare professionals.

  • 12. Aho, Anna Carin
    et al.
    Hultsjö, Sally
    Hjelm, Katarina
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Caring Sciences.
    Perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support and using a wheelchair: an interview study2019In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 41, no 19, p. 2289-2298Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To describe perceptions of the transition from receiving the diagnosis recessive limb-girdle muscular dystrophy to becoming in need of human support to manage daily life and using a wheelchair for ambulation, from the affected young adults' and their parents' perspectives.

    METHOD: A qualitative and descriptive study design was used. Semi-structured interviews were held with 14 young adults diagnosed with recessive limb-girdle muscular dystrophy and 19 parents. Phenomenography was used for data analysis.

    RESULTS: The diagnosis was described as being a shock and difficult to comprehend but also as a relief and a tool for information. Beginning to use a wheelchair was perceived to be mentally difficult but it also provided freedom. New ways of living involved physical, emotional, practical, and social difficulties as well as experiences of learning to adapt to the disease. The transition was overshadowed by concern about disease progression and influenced by facilitating factors, which were young adult being seen as a person; supportive family and friends; mobilized internal resources; meaningful daily activities; adapted environment; and professional support.

    CONCLUSIONS: The different perceptions expressed in this study highlight the importance of identifying personal perceptions and needs in order to optimize support provided by healthcare professionals.

    Implications for Rehabilitation

    • The different perceptions described in this study emphasize the need for person-centered care for young adults living with recessive limb-girdle muscular dystrophy and their parents.
    • Regular controls and professional support to cope with the disease and its consequences should be offered, not only at the time of diagnosis but also throughout disease progression.
    • Beginning to use a wheelchair can be a psychologically distressing process, which has to be acknowledged by healthcare professionals when introducing it.
    • Healthcare professionals should not only recognize the importance of having social relations and activities that are meaningful but also be a link to authorities in society and to interest organizations that can help to facilitate the person's management of the disease.
  • 13.
    Aho, Anna Carin
    et al.
    Linnaeus Univ, Dept Hlth & Caring Sci, Vaxjo, Sweden.
    Hultsjö, Sally
    Cty Hosp, Psychiat Clin, Jonkoping, Sweden.
    Hjelm, Katarina
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Young adults' experiences of living with recessive limb-girdle muscular dystrophy from a salutogenic orientation: an interview study.2015In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 37, no 22, p. 2083-2091Article in journal (Refereed)
    Abstract [en]

    To describe young adults' experiences of living with recessive limb-girdle muscular dystrophy (LGMD2) from a salutogenic orientation. Methods: A qualitative explorative interview study, including 14 participants aged 20-30 years, was performed focusing on comprehensibility, manageability and meaningfulness in daily life. Content analysis was used for data analysis. Result: Living with LGMD2 not only implies learning to live with the disease and the variations between good and bad periods but also means trying to make sense of a progressive disease that brings uncertainty about future health, by striving to make the best of the situation. Disease progression involves practical and mental struggle, trying to maintain control over one's life despite vanished physical functions that require continual adjustments to the body. Restrictions in a double sense were described, not only due to the disease but also due to poor comprehension of the disease in society. Lack of knowledge about LGMD2 among professionals often results in having to fight for the support needed. Conclusion: In order to manage daily life, it is important to be seen and understood as an individual in contacts with professionals and in society in general, to have informal social support and meaningful activities as well as access to personal assistance if necessary. Implications for Rehabilitation Recessive limb-girdle muscular dystrophy (LGMD2) is a group of progressive disorders, which manifest in physical and psychological consequences for the individual. According to the salutogenic orientation, people need to find life comprehensible, manageable and meaningful, i.e. to achieve a sense of coherence (SOC), but living with LGMD2 may recurrently challenge the individual's SOC. Through the holistic view of the individual's situation that the salutogenic orientation provides, professionals may support the individual to strengthen SOC and thereby facilitate the movement towards health.

  • 14.
    Aho, Anna-Carin
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hultsjö, Sally
    Cty Hosp, Jönköping.
    Hjelm, Katarina
    Linköping University.
    Young adults' experiences of living with recessive limb-girdle muscular dystrophy from a salutogenic orientation: an interview study2015In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 37, no 22, p. 2083-2091Article in journal (Refereed)
    Abstract [en]

    Purpose: To describe young adults' experiences of living with recessive limb-girdle muscular dystrophy (LGMD2) from a salutogenic orientation. Methods: A qualitative explorative interview study, including 14 participants aged 20-30 years, was performed focusing on comprehensibility, manageability and meaningfulness in daily life. Content analysis was used for data analysis. Result: Living with LGMD2 not only implies learning to live with the disease and the variations between good and bad periods but also means trying to make sense of a progressive disease that brings uncertainty about future health, by striving to make the best of the situation. Disease progression involves practical and mental struggle, trying to maintain control over one's life despite vanished physical functions that require continual adjustments to the body. Restrictions in a double sense were described, not only due to the disease but also due to poor comprehension of the disease in society. Lack of knowledge about LGMD2 among professionals often results in having to fight for the support needed. Conclusion: In order to manage daily life, it is important to be seen and understood as an individual in contacts with professionals and in society in general, to have informal social support and meaningful activities as well as access to personal assistance if necessary.Implications for RehabilitationRecessive limb-girdle muscular dystrophy (LGMD2) is a group of progressive disorders, which manifest in physical and psychological consequences for the individual.According to the salutogenic orientation, people need to find life comprehensible, manageable and meaningful, i.e. to achieve a sense of coherence (SOC), but living with LGMD2 may recurrently challenge the individual's SOC.Through the holistic view of the individual's situation that the salutogenic orientation provides, professionals may support the individual to strengthen SOC and thereby facilitate the movement towards health.

  • 15.
    Alföldi, Peter
    et al.
    Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center. Linköping University, Department of Medical and Health Sciences, Division of Community Medicine.
    Gerdle, Björn
    Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center. Linköping University, Department of Medical and Health Sciences, Division of Community Medicine.
    Wiklund, Tobias
    Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center. Linköping University, Department of Medical and Health Sciences, Division of Community Medicine.
    Comorbid insomnia in patients with chronic pain: a study based on the Swedish quality registry for pain rehabilitation (SQRP)2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 20, p. 1661-1669Article in journal (Refereed)
    Abstract [en]

    Purpose: This study investigates the prevalence of insomnia and its relationship to other symptoms and health aspects in patients with chronic pain. Methods: Patients with chronic pain conditions (n = 845) referred to a multidisciplinary pain centre completed surveys provided by the Swedish quality registry for pain rehabilitation (SQRP). The SQRP collects data on socio-demographics, health status, symptoms of pain, mood and insomnia and life satisfaction. Results: The majority of patients (65.3%) had clinical insomnia according to the insomnia severity index (ISI). Insomnia correlated significantly but weakly with pain, depression, anxiety and coping; the strongest multivariate correlations were found with depression and anxiety followed by pain interference and pain severity. Pain intensity, depression and anxiety correlated stronger than ISI with respect to the two investigated aspects of health. Conclusions: The prevalence of insomnia is high in patients with chronic pain conditions, but the level of importance in relation to other symptoms for health aspects is low, and the associations with other important symptoms are relatively weak. One way to increase the effects of multimodal rehabilitation programs may be to provide interventions directed specifically at insomnia rather than focusing only on interventions that address pain, depression and anxiety. Implications for Rehabilitation The prevalence of insomnia is high in patients with complex chronic pain conditions. Relatively low correlations existed between insomnia and pain intensity, depression, anxiety and other psychological aspects. Pain intensity, anxiety and depression were more important for perceived health aspects than insomnia. One way to increase the effects of multimodal rehabilitation programs may be to also include interventions directed directly to insomnia.

  • 16.
    Algurén, Beatrix
    et al.
    Institute of Neuroscience and Physiology, Section of Clinical Neuroscience and Rehabilitation Medicine, University of Gothenburg, Sweden.
    Lundgren-Nilsson, Åsa
    Institute of Neuroscience and Physiology, Section of Clinical Neuroscience and Rehabilitation Medicine, University of Gothenburg, Sweden.
    Stibrant-Sunnerhagen, Katharina
    Institute of Neuroscience and Physiology, Section of Clinical Neuroscience and Rehabilitation Medicine, University of Gothenburg, Sweden.
    Facilitators and barriers of stroke survivors in the earlypost-stroke phase.2009In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 31, no 19, p. 1584-1591Article in journal (Refereed)
    Abstract [en]

    Purpose. To identify facilitators and barriers among persons with first-ever stroke discharged to the home in the first 3 months post-stroke by means of ICF categories.

    Method. Stroke survivors were interviewed using semi-structured questions based on the ICF categories of Environmental factors of the Comprehensive ICF Core Set for Stroke (extended version) at 6 weeks and at 3 months post-stroke.

    Results. The study sample exists of 67 stroke survivors with an average age of 71 years (51% women). Eleven environmental factors from the ICF chapters ‘support and relationship’, ‘products and technology’ and ‘services, systems and policies’ were experienced to be facilitators and only ‘physical geography’ was experienced as a barrier by 50% or more of the participants in the study.

    Conclusions. It was possible to document facilitators and barriers among stroke survivors in a structured way using ICF categories. The high number of experienced facilitators gives an idea of how well stroke care functions in Sweden. There is a great need for further studies examining environmental factors in the post-stroke phase.

  • 17.
    Algurén, Beatrix
    et al.
    Jönköping University, School of Health Science.
    Lundgren-Nilsson, Åsa
    Institute of Neuroscience and Physiology, University of Gothenburg, Sweden.
    Stibrant-Sunnerhagen, Katharina
    Institute of Neuroscience and Physiology, University of Gothenburg, Sweden.
    Functioning of stroke survivors - a validation of the ICF core set for stroke in Sweden.2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no 7, p. 551-559Article in journal (Refereed)
    Abstract [en]

    Purpose. To validate the body functions and activities and participation part of the extended International Classification ofFunctioning, Disability, and Health (ICF) core set for stroke with a Swedish population in the first 3 months post-stroke.

    Method. At 6 weeks and at 3 months post-stroke, stroke survivors were evaluated by 59 ICF categories of body functions, 59 categories of activities and participation from the stroke ICF core set (extended version).

    Results. The study sample included 99 stroke survivors (54% women) with an average age of 72 years. Statistical significantproblems were identified in 28 ICF categories of body functions and in 41 ICF categories of activities and participation atboth time points, at 6 weeks and at 3 months. About 17 ICF categories were reported as problems in independent (i.e. modified Rankin Scale (mRS)2) and about 34 categories in dependent (i.e. mRS42) stroke survivors.

    Conclusions. The results suggest a possible reduction of the stroke ICF core set from 59 to 28 categories of body functionsand from 59 to 41 categories of activities and participation. Hence, feasibility of the core set for multiprofessional assessment increases and the core set might find more integration in clinical practice. The number of problems in mobility and self-care mainly distinguished between independent and dependent stroke survivors.

  • 18. Almborg, Ann-Helene
    et al.
    Welmer, Anna-Karin
    Stockholm University, Faculty of Social Sciences, Aging Research Center (ARC), (together with KI).
    Use of the international classification of functioning, disability and health (ICF) in social services for elderly in Sweden2012In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 34, no 11, p. 959-964Article in journal (Refereed)
    Abstract [en]

    ABSTRACT To examine the content of health information in acts of social services of elderly people in relation to the International Classification of Functioning, Disability and Health (ICF) and to describe the health information in the different parts of the acts according to the ICF. Health information of 25 acts from four municipalities was analysed and the concepts were linked to ICF codes, using the established coding rules. The health information consisted of 372 concepts, which were linked to 122 specific ICF codes. The concepts in the acts were mostly linked to the ICF component Activities and Participation, except for the current functioning concepts where the ICF component Body functions was the most frequent. The 3rd level was most frequent in Activities and Participation and in Environmental factors, and the 2nd level was most frequent in Body functions. The ICF covers the concepts and terms contained in the acts to a large extent. Furthermore, the results show that the ICF codes differ in the different parts of the acts. The ICF provides a coherent and structured documentation, which contributes to a legally secure assessment of assistance. The selection of ICF codes can be used in development of "code sets" for social services for elderly.

  • 19.
    Almborg, Ann-Helene
    et al.
    Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Natl Board Hlth & Welf, Nord Ctr Classificat Hlth, S-16030 Stockholm, Sweden.
    Welmer, Anna-Karin
    ARC, Karolinska Inst, Dept Neurobiol Care Sci & Soc, Stockholm, Sweden.
    Use of the International Classification of Functioning, Disability and Health (ICF) in social services for elderly in Sweden2012In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 34, no 11, p. 959-964Article in journal (Refereed)
    Abstract [en]

    Purpose: To examine the content of health information in acts of social services of elderly people in relation to the International Classification of Functioning, Disability and Health (ICF) and to describe the health information in the different parts of the acts according to the ICF. Method: Health information of 25 acts from four municipalities was analysed and the concepts were linked to ICF codes, using the established coding rules. Results: The health information consisted of 372 concepts, which were linked to 122 specific ICF codes. The concepts in the acts were mostly linked to the ICF component Activities and Participation, except for the current functioning concepts where the ICF component Body functions was the most frequent. The 3rd level was most frequent in Activities and Participation and in Environmental factors, and the 2nd level was most frequent in Body functions. Conclusions: The ICF covers the concepts and terms contained in the acts to a large extent. Furthermore, the results show that the ICF codes differ in the different parts of the acts. The ICF provides a coherent and structured documentation, which contributes to a legally secure assessment of assistance. The selection of ICF codes can be used in development of "code sets" for social services for elderly.

  • 20.
    Alriksson-Schmidt, Ann I.
    et al.
    Lund Univ, Div Orthopaed, Dept Clin Sci, Lund, Sweden..
    Arner, Marianne
    Karolinska Inst, Dept Clin Sci & Educ, Stockholm, Sweden.;Soder Sjukhuset, Dept Hand Surg, Stockholm, Sweden..
    Westbom, Lena
    Lund Univ, Skne Univ Hosp, Dept Clin Sci, Paediat, Lund, Sweden.;Karolinska Inst, Astrid Lindgren Childrens Hosp, Dept Womens & Childrens Hlth, Stockholm, Sweden..
    Krumlinde-Sundholm, Lena
    Lund Univ, Dept Hlth Sci, Fac Med, Lund, Sweden..
    Nordmark, Eva
    Rodby-Bousquet, Elisabet
    Lund Univ, Div Orthopaed, Dept Clin Sci, Lund, Sweden.;Lund Univ, Dept Hlth Sci Fac Med, Lund, Sweden..
    Hägglund, Gunnar
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Clinical Research, County of Västmanland. Lund Univ, Div Orthopaed, Dept Clin Sci, Lund, Sweden..
    A combined surveillance program and quality register improves management of childhood disability2017In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 39, no 8, p. 830-836Article in journal (Refereed)
    Abstract [en]

    Purpose: To describe a concept for prevention of secondary conditions in individuals with chronic neuromuscular disabilities by using two Swedish developed follow-up-programmes for cerebral palsy (CP; CPUP) and myelomeningocele (MMC; MMCUP) respectively as examples. Method: This paper describes and outlines the rationale, development and implementation of CPUP and MMCUP. Results: Both programmes are multidisciplinary longitudinal follow-up programmes that simultaneously serve as national registries. The programmes are population-based and set in Swedish habilitation clinics. Most children (95%) born 2000 or later with CP are enrolled in CPUP and the recruitment of adults is underway. CPUP has also been implemented in Norway, Denmark, Iceland, Scotland and parts of Australia. In MMCUP, almost all children with MMC born 2007 or later participate and individuals of all ages are now invited. The registries provide epidemiological profiles associated with CP and MMC and platforms for population-based research and quality of care improvement. Conclusions: Through multidisciplinary follow-up and early detection of emerging complications individuals with CP or MMC can receive less complex and more effective interventions than if treatment is implemented at a later stage. Possibilities and challenges to design, implement and continuously run multidisciplinary secondary prevention follow-up programmes and quality registries for individuals with CP or MMC are described and discussed.Implications for rehabilitationIndividuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions.Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions. IMPLICATIONS FOR REHABILITATION Individuals with disabilities such as cerebral palsy or myelomeningocele are at risk of developing secondary conditions. Multidisciplinary population-based longitudinal follow-up programmes seem effective in preventing certain types of secondary conditions.

  • 21.
    Alwin, Jenny
    et al.
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment. Linköping University, Faculty of Health Sciences.
    Persson, Jan
    Linköping University, Department of Medical and Health Sciences, Health Technology Assessment. Linköping University, Faculty of Health Sciences.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Physiotherapy. Linköping University, Faculty of Health Sciences.
    Perception and significance of an assistive technology intervention - the perspectives of relatives of persons with dementia2013In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 35, no 18, p. 1519-1526Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim of this study was to examine relatives' perception of an assistive technology intervention aimed at persons with dementia (PwDs) and their relatives, and to examine whether, and how, experiences of the intervention process differed between relatives valuing the intervention to be of high, and relatives perceiving it to be of low significance. Method: A total of 47 relatives of PwDs within the Swedish Technology and Dementia project were interviewed telephonically using a modified version of the Patient perspective on Care and Rehabilitation process instrument. A total of 46 participants were divided into two groups depending on whether they valued the intervention to be of great significance (GS group; N = 33) or of some/no significance (SNS group; N = 13). Results: Several aspects of the intervention were perceived as highly important, e.g. being shown consideration and respect, and having somewhere to turn. The results indicate that relatives in the GS group perceived certain aspects of the intervention process as highly fulfilled to a larger extent than did relatives in the SNS group. Conclusions: This study illustrates how process evaluations can be used to increase the understanding and to identify improvement aspects of interventions.

  • 22.
    Andersson, H. Ingemar
    Kristianstad University, School of Health and Society.
    Increased mortality among individuals with chronic widespread pain relates to lifestyle factors: a prospective population-based study2009In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, p. 1-8Article in journal (Refereed)
    Abstract [en]

    Purpose. Widespread chronic pain has been related to disability and loss of quality of life, but in a few epidemiological studies also to increased mortality. The aim of this study was to further investigate the relationship between chronic pain, lifestyle factors and all cause mortality. Methods. A random sample of an adult (age 25-74) Swedish population (n = 1609) responded to a comprehensive questionnaire on pain, other symptoms, lifestyle, work and socioeconomic factors in 1988. Mortality data for this cohort between 1988 and 2002 were analysed. Survival analysis (Kaplan-Meier) and Cox proportional regression were used to study initially reported factors influencing survival. Results. Individuals with widespread chronic pain showed an increased mortality risk (hazard ratio, HR = 1.95, CI: 1.26-3.03) compared to the group without chronic pain. Death due to cardiovascular disease accounted for the increased mortality. Adjustment for lifestyle factors eliminated the excess risk. Conclusions. Increased mortality among individuals with widespread chronic pain is related to factors like smoking, sleep disturbances and low physical activity. The result emphasises the importance of including lifestyle factors in a cognitive-behavioural rehabilitation process. It remains to be shown whether health promotion activities aimed at lifestyle could change mortality among individuals with chronic pain.

  • 23.
    Andrews, Jaimi
    et al.
    School of Exercise and Health Sciences, Edith Cowan University, Perth, Western Australia, Australia.
    Falkmer, Marita
    Jönköping University, School of Education and Communication, HLK, CHILD. School of Occupational Therapy and Social Work, Curtin University, Perth, Western Australia, Australia.
    Girdler, Sonya
    School of Exercise and Health Sciences, Edith Cowan University, Perth, Western Australia, Australia; School of Occupational Therapy and Social Work, Curtin University, Perth, Western Australia, Australia.
    Community participation interventions for children and adolescents with neurodevelopmental intellectual disability: A systematic review2015In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 37, no 10, p. 825-833Article in journal (Refereed)
  • 24.
    Appelros, Peter
    et al.
    Örebro University, Department of Clinical Medicine.
    Nydevik, Ingegerd
    Terént, Andreas
    Living setting and utilisation of ADL assistance one year after a stroke with special reference to gender differences2006In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 28, no 1, p. 43-49Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To examine living setting and need for ADL assistance before and one year after a first-ever stroke with special focus on gender differences. METHODS: One-year survivors from a population-based stroke study (n = 377) were studied with regard to place of living, need for ADL assistance and who provided the help. Stroke severity, cognitive impairment, post-stroke depression as well as risk factors were evaluated. RESULTS: Before the stroke 48 patients (13%) lived in special housing (service flats or nursing homes), and one year after the stroke, 50 of the survivors (20%) lived in such accommodations. Before the stroke, 80 (21%) of the patients needed help with their personal ADL, while 90 (36%) needed help after one year. The increased need was fulfilled by relatives. Female spouses more often helped their male counterparts, and they tended to accept a heavier burden. Age, living alone, stroke severity, cognitive impairment, pre-stroke ADL dependency and depression were predictors for special housing. CONCLUSIONS: In a time when more and more stroke survivors are cared for at home, it is important to pay attention to the situation of the caregivers. Female caregivers seem to be in an especially exposed position by accepting a heavier burden.

  • 25.
    Arnadottir, Solveig A
    et al.
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Physiotherapy.
    Gunnarsdottir, Elin D
    Stenlund, Hans
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Epidemiology and Global Health.
    Lundin-Olsson, Lillemor
    Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Physiotherapy.
    Participation frequency and perceived participation restrictions at older age: applying the International Classification of Functioning, Disability and Health (ICF) framework2011In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 33, no 23-24, p. 2208-2216Article in journal (Refereed)
    Abstract [en]

    Purpose: To identify variables from different components of International Classification of Functioning, Disability and Health (ICF) associated with older people's participation frequency and perceived participation restrictions. Method: Participants (N = 186) were community-living, 65-88 years old and 52% men. The dependent variables, participation frequency (linear regression) and perceived participation restrictions (logistic regression), were measured using The Late-Life Function and Disability Instrument. Independent variables were selected from various ICF components. Results: Higher participation frequency was associated with living in urban rather than rural community (beta = 2.8, p < 0.001), physically active lifestyle (beta = 4.6, p < 0.001) and higher cognitive function (beta = 0.3, p = 0.009). Lower participation frequency was associated with being older (beta = -0.2, p = 0.002) and depressive symptoms (beta = -0.2, p = 0.029). Older adults living in urban areas, having more advanced lower extremities capacity, or that were employed had higher odds of less perceived participation restrictions (adjusted odds ratio [OR] = 5.5, p = 0.001; OR = 1.09, p < 0.001; OR = 3.7, p = 0.011; respectively). In contrast, the odds of less perceived participation restriction decreased as depressive symptoms increased (OR = 0.8, p = 0.011). Conclusions: Our results highlight the importance of capturing and understanding both frequency and restriction aspects of older persons' participation. ICF may be a helpful reference to map factors associated with participation and to study further potentially modifiable influencing factors such as depressive symptoms and advanced lower extremity capacity.

  • 26.
    Arvidsson, Patrik
    et al.
    Örebro University, School of Health and Medical Sciences, Örebro University, Sweden. Centre for Research & Development, Uppsala University/County Council of Gävleborg, Gävle, Sweden.
    Granlund, Mats
    Swedish Institute for Disability Research, Örebro University, Örebro , Sweden; Swedish Institute for Disability Research, Örebro University, Örebro , Sweden.
    Thyberg, Ingrid
    Department of Clinical and Experimental Medicine, Faculty of Rheumatology, Linköping University, Linköping, Sweden.
    Thyberg, Mikael
    Swedish Institute for Disability Research, Örebro University, Örebro, Sweden; Department of Medical and Health Sciences, Faculty of Rehabilitation Medicine, Linköping University, Linköping, Sweden.
    Important aspects of participation and participation restrictions in people with a mild intellectual disability2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 15, p. 1264-1272Article in journal (Refereed)
    Abstract [en]

    Purpose: This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability.

    Method: Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n = 69). The items were ranked by perceived importance, performance and by combined measures. Furthermore, the measures were related to a single question about subjective general well-being.

    Results: Rankings of performance highlighted about the same items as "important participation", while rankings of low performance addressed quite different items compared with "important participation restriction". Significant correlations were found between subjective general well-being and high performance (r = 0.56), high performance/high importance (important participation) (r = 0.56), low performance (r = -0.56) and low performance/high importance (important participation restriction; r -0.55).

    Conclusions: The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation.

  • 27.
    Arvidsson, Patrik
    et al.
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Medicinska och farmaceutiska vetenskapsområdet, centrumbildningar mm, Centre for Research and Development, Gävleborg.
    Granlund, Mats
    Thyberg, Ingrid
    Thyberg, Mikael
    Important aspects of participation and participation restrictions in people with a mild intellectual disability2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 15, p. 1264-1272Article in journal (Refereed)
    Abstract [en]

    Purpose: This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability. Method: Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n = 69). The items were ranked by perceived importance, performance and by combined measures. Furthermore, the measures were related to a single question about subjective general well-being. Results: Rankings of performance highlighted about the same items as "important participation", while rankings of low performance addressed quite different items compared with "important participation restriction". Significant correlations were found between subjective general well-being and high performance (r = 0.56), high performance/high importance (important participation) (r = 0.56), low performance (r = -0.56) and low performance/high importance (important participation restriction; r -0.55). Conclusions: The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation.

  • 28.
    Arvidsson, Patrik
    et al.
    Örebro University, Sweden; Uppsala University, Sweden .
    Granlund, Mats
    Örebro University, Sweden; Jönköping University, Sweden .
    Thyberg, Ingrid
    Linköping University, Department of Clinical and Experimental Medicine, Division of Inflammation Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Heart and Medicine Center, Department of Rheumatology.
    Thyberg, Mikael
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Anaesthetics, Operations and Specialty Surgery Center, Pain and Rehabilitation Center. Örebro University, Sweden.
    Important aspects of participation and participation restrictions in people with a mild intellectual disability2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 15, p. 1264-1272Article in journal (Refereed)
    Abstract [en]

    Purpose: This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability. Method: Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n = 69). The items were ranked by perceived importance, performance and by combined measures. Furthermore, the measures were related to a single question about subjective general well-being. Results: Rankings of performance highlighted about the same items as "important participation", while rankings of low performance addressed quite different items compared with "important participation restriction". Significant correlations were found between subjective general well-being and high performance (r = 0.56), high performance/high importance (important participation) (r = 0.56), low performance (r = -0.56) and low performance/high importance (important participation restriction; r -0.55). Conclusions: The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation.

  • 29.
    Arvidsson, Patrik
    et al.
    Swedish Institute for Disability Research, Örebro University, Örebro, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Thyberg, Ingrid
    Department of Clinical and Experimental Medicine, Faculty of Rheumatology, Linköping University, Linköping , Sweden.
    Thyberg, Mikael
    Swedish Institute for Disability Research, Örebro University, Örebro , Sweden.
    Important aspects of participation and participation restrictions in people with a mild intellectual disability2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 15, p. 1264-1272Article in journal (Refereed)
    Abstract [en]

    Purpose: This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability.

    Method: Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n  = 69). The items were ranked by perceived importance, performance and by combined measures. Furthermore, the measures were related to a single question about subjective general well-being.

    Results: Rankings of performance highlighted about the same items as “important participation”, while rankings of low performance addressed quite different items compared with “important participation restriction”. Significant correlations were found between subjective general well-being and high performance (r = 0.56), high performance/high importance (important participation) (r = 0.56), low performance (r = –0.56) and low performance/high importance (important participation restriction; r = –0.55).

    Conclusions: The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation.

  • 30.
    Augustine, Lilly
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD. Kristianstad University, Sweden.
    Lygnegård, Frida
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue).
    Adolfsson, Margareta
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Linking youths’ mental, psychosocial, and emotional functioning to ICF-CY: Lessons learned2018In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 19, p. 2293-2299Article in journal (Refereed)
    Abstract [en]

    Purpose: Linking ready-made questionnaires to codes within the International Classification of Functioning, Disability and Health, Children and Youth Version with the intention of using the information statistically for studying mental health problems can pose several challenges. Many of the constructs measured are latent, and therefore, difficult to describe in single codes. The aim of this study was to describe and discuss challenges encountered in this coding process.

    Materials and methods: A questionnaire from a Swedish research programme was linked to the International Classification of Functioning, Disability and Health, Children and Youth Version and the agreement was assessed.

    Results: Including the original aim of the questionnaire into the coding process was found to be very important for managing the coding of the latent constructs of the items. Items from the International Classification of Functioning, Disability and Health, Children and Youth Version chapters with narrow definitions for example mental functions, were more easily translated to meaningful concepts to code, while broadly defined chapters, such as interactions and relationships, were more difficult.

    Conclusion: This study stresses the importance of a clear, predefined coding scheme as well as the importance of not relying too heavily on common linking rules, especially in cases when it is not possible to use multiple codes for a single item.

    • Implications for rehabilitation
    • The International Classification of Functioning, Disability and Health, Children and Youth Version, is a useful tool for merging assessment data from several sources when documenting adolescents’ mental functioning in different life domains.

    • Measures of mental health are often based on latent constructs, often revealed in the description of the rationale/aim of a measure. The latent construct should be the primary focus in linking information.

    • By mapping latent constructs to the International Classification of Functioning, Disability and Health, Children and Youth Version, users of the classification can capture a broad range of areas relevant to everyday functioning in adolescents with mental health problems.

    • The subjective experience of participation, i.e., the level of subjective involvement, is not possible to code into the International Classification of Functioning, Disability and Health, Children and Youth Version. However, when linking mental health constructs to the International Classification of Functioning, Disability and Health, Children and Youth Version codes, the two dimensions of participation (the being there, and the level of involvement) need to be separated in the linking process. This can be performed by assigning codes focusing on being there as separate from items focusing on the subjective experience of involvement while being there.

  • 31.
    Augustine, Lilly
    et al.
    Kristianstad University, Faculty of Health Science, Research Environment Children's and Young People's Health in Social Context (CYPHiSCO). Kristianstad University, School of Education and Environment, Avdelningen för Psykologi. Jönköping University.
    Lygnegård, Frida
    Jönköping University.
    Granlund, Mats
    Jönköping University.
    Adolfsson, Margareta
    Jönköping University.
    Linking youths' mental, psychosocial, and emotional functioning to ICF-CY: lessons learned2017In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 19, p. 2293-2299Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Linking ready-made questionnaires to codes within the International Classification of Functioning, Disability and Health, Children and Youth Version with the intention of using the information statistically for studying mental health problems can pose several challenges. Many of the constructs measured are latent, and therefore, difficult to describe in single codes. The aim of this study was to describe and discuss challenges encountered in this coding process.

    MATERIALS AND METHODS: A questionnaire from a Swedish research programme was linked to the International Classification of Functioning, Disability and Health, Children and Youth Version and the agreement was assessed.

    RESULTS: Including the original aim of the questionnaire into the coding process was found to be very important for managing the coding of the latent constructs of the items. Items from the International Classification of Functioning, Disability and Health, Children and Youth Version chapters with narrow definitions for example mental functions, were more easily translated to meaningful concepts to code, while broadly defined chapters, such as interactions and relationships, were more difficult.

    CONCLUSION: This study stresses the importance of a clear, predefined coding scheme as well as the importance of not relying too heavily on common linking rules, especially in cases when it is not possible to use multiple codes for a single item. Implications for rehabilitation The International Classification of Functioning, Disability and Health, Children and Youth Version, is a useful tool for merging assessment data from several sources when documenting adolescents' mental functioning in different life domains. Measures of mental health are often based on latent constructs, often revealed in the description of the rationale/aim of a measure. The latent construct should be the primary focus in linking information. By mapping latent constructs to the International Classification of Functioning, Disability and Health, Children and Youth Version, users of the classification can capture a broad range of areas relevant to everyday functioning in adolescents with mental health problems. The subjective experience of participation, i.e., the level of subjective involvement, is not possible to code into the International Classification of Functioning, Disability and Health, Children and Youth Version. However, when linking mental health constructs to the International Classification of Functioning, Disability and Health, Children and Youth Version codes, the two dimensions of participation (the being there, and the level of involvement) need to be separated in the linking process. This can be performed by assigning codes focusing on being there as separate from items focusing on the subjective experience of involvement while being there.

  • 32.
    Axelsson, Anna Karin
    et al.
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Imms, Christine
    Australian Catholic University, Melbourne.
    Wilder, Jenny
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Strategies that facilitate participation in family activities of children and adolescents with profound intellectual and multiple disabilities: parents’ and personal assistants’ experiences2014In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 36, no 25, p. 2169-2177Article in journal (Refereed)
    Abstract [en]

    Purpose: Participation throughout one's life plays a significant role for development and emotional well-being. For this reason, there is a need to identify ways to facilitate participation in family activities for children and adolescents with profound intellectual and multiple disabilities (PIMD).

    Methods: The study design was qualitative and explorative, based on semi structured interviews with 11 parents and 9 personal assistants of children with PIMD.

    Results: The interviews revealed participation-facilitating strategies relating to the children's/adolescent's proximal environment, such as "Availability and acceptability of the activity", "Good knowledge about the child" and a "A positive attitude of people close to the child", as well as strategies related to the children/adolescents themselves: "Sense of belonging", "Possible for the child/adolescent to understand", "Opportunities to influence" and "Feeling of being needed".

    Conclusions: Children and adolescents with PIMD are dependent on support obtained through their environment. The identified strategies, individually adapted through awareness and knowledge by the parents and the personal assistants, provide important evidence to assist our understanding in gaining understanding about how to improve participation in family activities of children and adolescents with PIMD.

    Implications for Rehabilitation Participation-facilitating strategies related to the child/adolescent and his or her proximal environments are identified to improve participation in children and adolescents with profound intellectual and multiple disabilities (PIMD). Examples of strategies for the child's/adolescents' proximal environment include "good knowledge about the child/adolescent", and, for the child/adolescent, include creating "sense of belonging" and "opportunities to influence". Identifying and making these strategies explicit may assist in enhancing the participation of children and adolescents with PIMD in family activities. People in the child's/adolescent's proximal environment need to set the scene for participation.

  • 33.
    Backman, Ellen
    et al.
    School of Health and Welfare, Halmstad University, Sweden.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ, Dep. of Social Work. Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD. Jönköping University, School of Health and Welfare, HHJ. SALVE (Social challenges, Actors, Living conditions, reseach VEnue).
    Karlsson, Ann-Kristin
    Department of Research and Development, Region Halland, Halmstad, Sweden.
    Documentation of everyday life and health care following gastrostomy tube placement in children: a content analysis of medical records2019In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, p. 1-11Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Everyday routines play a vital role in child functioning and development. This study explored health professionals' documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.

    METHODS: The medical records of 39 children (median age 38 months, min-max: 15-192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY.

    RESULTS: One overall theme, "Seeking a balance", captured the view of life with a gastrostomy and the health care provided. Two categories, "Striving for physical health" and "Depicting everyday life" with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component "Body functions".

    CONCLUSIONS: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy. Implications for Rehabilitation There is a need for increased awareness in healthcare professionals for a more consistent and holistic healthcare approach in the management of children with gastrostomy tube feeding. This study suggests that an expanded focus on children's participation in everyday mealtimes and in the healthcare follow-up of gastrostomy tube feeding is important in enhancing the intervention outcome. Multidisciplinary teams with a shared bio-psycho-social understanding of health would contribute to a situation in which the everyday lives of households adapt to living with gastrostomy. Routine care for children with gastrostomy should follow a checklist combining crucial physiological aspects of gastrostomy tube feeding with seemingly mundane family functions in order to achieve a successful gastrostomy tube feeding intervention.

  • 34.
    Backman, Ellen
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI). Regional Habilitation Centre, Region Halland, Kungsbacka, Sweden.
    Granlund, Mats
    CHILD Research group, SIDR, School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Karlsson, Ann-Kristin
    Department of Research and Development, Region Halland, Halmstad, Sweden.
    Documentation of everyday life and health carefollowing gastrostomy tube placement in children: a content analysis of medical records.2019In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165Article in journal (Refereed)
    Abstract [en]

    Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals’ documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals. Methods: The medical records of 39 children (median age 38 months, min–max: 15–192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY. Results: One overall theme, “Seeking a balance”, captured the view of life with a gastrostomy and the health care provided. Two categories, “Striving for physical health” and “Depicting everyday life” with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component “Body functions”. Conclusions: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy.Implications for Rehabilitation There is a need for increased awareness in healthcare professionals for a more consistent and holistic healthcare approach in the management of children with gastrostomy tube feeding. This study suggests that an expanded focus on children’s participation in everyday mealtimes and in the healthcare follow-up of gastrostomy tube feeding is important in enhancing the intervention outcome. Multidisciplinary teams with a shared bio-psycho-social understanding of health would contribute to a situation in which the everyday lives of households adapt to living with gastrostomy. Routine care for children with gastrostomy should follow a checklist combining crucial physiological aspects of gastrostomy tube feeding with seemingly mundane family functions in order to achieve a successful gastrostomy tube feeding intervention.  © 2019 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

  • 35.
    Behm, Lina
    et al.
    University of Gothenburg.
    Zidén, Lena
    University of Gothenburg.
    Dunér, Anna
    University of Gothenburg.
    Falk, Kristin
    University of Gothenburg.
    Dahlin-Ivanoff, Synneve
    University of Gothenburg.
    Multi-professional and multi-dimensional group education--a key to action in elderly persons.2013In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 35, no 5, p. 427-35Article in journal (Refereed)
    Abstract [en]

    PURPOSE: This study was intended to evaluate a multi-professional health-promoting and disease-preventive intervention organized as multi-professional senior group meetings, which addressed home-dwelling, independently living, cognitively intact elderly persons (80±), by exploring the participants' experiences of the intervention.

    METHOD: The focus group methodology was used to interview a total of 20 participants. The informants had participated in four multi-professional senior group meetings at which information about the ageing process and preventive strategies for enhancing health were discussed.

    RESULTS: The overall finding was that the elderly persons involved in the intervention lived in the present, but that the supportive environment together with learning a preventive approach contributed to the participants' experiencing the senior meetings as a key to action.

    CONCLUSIONS: Elderly persons who are independent may have difficulty accepting information about preventing risks to health. However, group education with a multi-professional approach may be a successful model for achieving an exchange of knowledge, which may possibly empower the participants, give them role models, the opportunity to learn from each other and a sense of sharing problems with people in similar circumstances.

  • 36. Berglund, Britta
    et al.
    Mattiasson, Anne-Cathrine
    Sophiahemmet University College.
    Randers, Ingrid
    Sophiahemmet University College.
    Dignity not fully upheld when seeking health care: experiences expressed by individuals suffering from Ehlers-Danlos syndrome2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no 1, p. 1-7Article in journal (Refereed)
    Abstract [en]

    Aim. The principle of human dignity has assumed importance in ethics and constitutional law throughout the 20th century in the Western world. It calls for respect of each individual as unique, and of treating him or her as a subject, never as a mere object. As such, the principle constitutes an ethical cornerstone in health care. Patients suffering from Ehlers-Danlos syndrome (EDS) challenge medical care and knowledge in health-care professionals' as symptoms sometimes are vague. Individuals with this disorder have reported not being respected when seeking health care. Purpose. To describe encounters in health-care situations when individuals suffering from EDS experienced that their dignity was not fully upheld. A further aim was to describe the long-term consequences of these experiences. Method. A study-specific questionnaire was designed, where individuals with EDS described their encounters with health care from a personal perspective. Results. After qualitative content analysis, the following five categories were identified: 'Being ignored and belittled by health-care professionals,' 'Being assigned psychological and/or psychiatric explanations', 'Being treated and considered merely as an object', 'Being trespassed in one's personal sphere' and 'Being suspected of family violence'. Consequences of these encounters were 'Mistrusting the physician' and 'Risking bad health'. Conclusions. The memory of not being respected is substantial for individuals with EDS and can last for years. As a result, lack of trust for the health-care system is created and they may experience difficulties in future encounters with health care. Therefore, health-care professionals should base their actions on norms that protect human dignity and confirm each patient as a unique human being with resources and abilities to master their own life.

  • 37. Berglund, Britta
    et al.
    Nordström, Gun
    Hagberg, Catharina
    Mattiasson, Anne-Cathrine
    Sophiahemmet University College.
    Foot pain and disability in individuals with Ehlers-Danlos syndrome (EDS): impact on daily life activities2005In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 27, no 4, p. 164-9Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To investigate the amount and severity of podiatric problems in individuals with EDS as well as the consequences on daily life activities, and to compare these results with the results from a comparison group of the general population. METHOD: The Manchester Foot Pain and Disability Schedule (MFPDS) and a demographic and foot-specific form were mailed. RESULTS: One hundred and thirty-six individuals with EDS and 292 from the comparison group responded. The median MFPDS total score in the EDS group was 33 (range 17-49) (mean 32, SD 8) and in the comparison group 17 (range 17-41) (mean 19, SD 4) (P < 0.001). The items most frequently marked with 3 points in the EDS group were: 'I avoid standing for a long time', 'I catch the bus or use the care more often', and 'I get irritable when my feet hurt' (56, 46 and 43%, respectively). When comparing the NRS score (i.e. Numeric Rating Scale) regarding pain intensity between the EDS group (median 5) and the comparison group (median 0), a statistically significant difference was found (P < 0.001). Other foot problems than pain were reported by 73% (n = 100) of the EDS group and by 21% (n = 60) of the comparison group (P < 0.001). The presence of flat feet in the EDS group and the comparison group was reported by 55% (n = 75) and 8% (n = 23) respectively. CONCLUSION: Individuals' with EDS endure difficulties with their mobility due to their foot problems and related disability. It is therefore of utmost importance to find ways to assess the actual foot status for this group and to support the individuals with solutions to their problems with ambulation.

  • 38.
    Bergman, Stefan
    Research and Development Centre, Spenshult, Oskarström, Sweden.
    Psychosocial aspects of chronic widespread pain and fibromyalgia2005In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 27, no 12, p. 675-683Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To study the impact on health status as measured by SF-36 in groups of subjects having chronic musculoskeletal pain with different degree of generalization: No chronic pain (NCP), chronic regional pain (CRP), chronic widespread pain (CWP), CWP with a stricter 'Manchester' definition (CWP-M), and clinically defined fibromyalgia (FM). The study also examines the association between psychosocial and lifestyle background variables, and these pain-groups.

    METHOD: A cross-sectional study with a postal survey to 3928 subjects, constituting a representative sample of the adult general population, followed by clinical examination in a selected group of subjects with CWP. CWP and FM were diagnosed according to ACR 1990 fibromyalgia criteria. Health status was measured by SF-36 Health Survey.

    RESULTS: Patients with CWP, CWP-M, and FM were found to present with more severe impairment of health status than the other two population groups. Several psychosocial factors, such as belonging to a lower socio-economic group, being an immigrant, living in a compromised housing area, having lower educational level, experiencing lower social support and having a family history of chronic pain, were associated with the populations with CWP and FM.

    CONCLUSIONS: The spectrum of impact on health and association to background variables, with respect to a stricter definition of CWP, indicates that these factors are important to attend to in the understanding and management of CWP and FM.

    © 2005 Taylor & Francis Group Ltd.

  • 39.
    Bergström, Maria
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences.
    Sverker, Annette
    Linköping University, Department of Culture and Society, Division of Social Work. Linköping University, Faculty of Arts and Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Activity and Health.
    Larsson Ranada, Åsa
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences.
    Valtersson, Eva
    Linköping University, Department of Health, Medicine and Caring Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Activity and Health.
    Thyberg, Ingrid
    Linköping University, Department of Biomedical and Clinical Sciences, Division of Inflammation and Infection. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Rheumatology.
    Ostlund, Gunnel
    Malardalen Univ, Sweden.
    Björk, Mathilda
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Rheumatology.
    Significant others influence on participation in everyday life - the perspectives of persons with early diagnosed rheumatoid arthritis2020In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 42, no 3, p. 385-393Article in journal (Refereed)
    Abstract [en]

    Purpose: To describe the meaning of significant others in relation to participation in everyday life of persons with early diagnosed rheumatoid arthritis (RA). Materials and methods: Fifty-nine persons participated in this interview study. Inclusion criteria were three years experience of diagnosis and being of working age. Semi-structured interviews were conducted using critical incident technique (CIT), and the material was analysed using content analysis. Results: Four categories were revealed: (1) My early RA causes activity adaptations for us all, referring to the person and significant others modifying activities. (2) Making the significant others balance between shortfalls and participation, where the participants distinguished between needing help and feeling involved in activities. (3) Physical interactions with significant others, referring to both the problematic and manageable impact RA could have on body contact. (4) Emotions in relation to activities with others, where participants described feelings of failing others, and anxiety about future activities. Conclusions: For persons with early diagnosed RA, significant others can be both hindering and facilitating for participation in everyday life. As a clinical implication, it is valuable to identify how significant others can be involved in the rehabilitation process, to enhance participation in everyday life early in the disease process.

  • 40.
    Bertilsson, Monica
    et al.
    University of Gothenburg, Sweden .
    Petersson, Eva-Lisa
    University of Gothenburg, Sweden .
    Östlund, Gunnel
    Linköping University, Department of Social and Welfare Studies, Social Work. Linköping University, Faculty of Arts and Sciences.
    Waern, Margda
    University of Gothenburg, Sweden .
    Hensing, Gunnel
    University of Gothenburg, Sweden .
    Capacity to work while depressed and anxious - a phenomenological study2013In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 35, no 20, p. 1705-1711Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim was to explore experiences of capacity to work in persons working while depressed and anxious in order to identify the essence of the phenomenon capacity to work. Method: Four focus groups were conducted with 17 participants employed within the regular job market. Illness experiences ranged from symptoms to clinical diagnoses. A phenomenological approach was employed. Results: The phenomenon of capacity to work was distinguished by nine constituents related to task, time, context and social interactions. The phenomenon encompassed a lost familiarity with ones ordinary work performance, the use of a working facade and adoption of new time-consuming work practices. Feelings of exposure in interpersonal encounters, disruption of work place order, lost "refueling and a trade-off of between work capacity and leisure-time activities was also identified. The reduced capacity was pointed out as invisible, this invisibility was considered troublesome. Conclusions: A complex and comprehensive concept emerged, not earlier described in work capacity studies. Rehabilitation processes would benefit from deeper knowledge of the individuals capacity to work in order to make efficient adjustments at work. Results can have particular relevance both in clinical and occupational health practice, as well as in the workplaces, in supporting re-entering workers after sickness absence.

  • 41.
    Bertilsson, Monica
    et al.
    Göteborgs universitet.
    Petersson, Eva-Lisa
    Göteborgs universitet.
    Östlund, Gunnel
    Linköpings universitet.
    Wearn, Magda
    Göteborgs universitet.
    Hensing, Gunnel
    Göteborgs universitet.
    Capacity to work while depressed and anxious - a phenomenological study2013In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 35, no 20, p. 1705-1711Article in journal (Refereed)
    Abstract [en]

    Purpose: The aim was to explore experiences of capacity to work in persons working while depressed and anxious in order to identify the essence of the phenomenon capacity to work. Method: Four focus groups were conducted with 17 participants employed within the regular job market. Illness experiences ranged from symptoms to clinical diagnoses. A phenomenological approach was employed. Results: The phenomenon of capacity to work was distinguished by nine constituents related to task, time, context and social interactions. The phenomenon encompassed a lost familiarity with one’s ordinary work performance, the use of a working facade and adoption of new time-consuming work practices. Feelings of exposure in interpersonal encounters, disruption of work place order, lost “refueling” and a trade-off of between work capacity and leisure-time activities was also identified. The reduced capacity was pointed out as invisible, this invisibility was considered troublesome. Conclusions: A complex and comprehensive concept emerged, not earlier described in work capacity studies. Rehabilitation processes would benefit from deeper knowledge of the individual’s capacity to work in order to make efficient adjustments at work. Results can have particular relevance both in clinical and occupational health practice, as well as in the workplaces, in supporting re-entering workers after sickness absence.Implications for Rehabilitation

    • The reduced capacity to work due to depression and anxiety is not always understandable or observable for others, therefore, the rehabilitation process would benefit from increased knowledge and understanding of the difficulties afflicted individuals experience at work.

    • Identifying tasks that contribute to “refueling” at work might enhance the success of the rehabilitation.

    • Rehabilitation programs could be tailored to better address the inabilities that impact on the capacity to work when depressed and anxious.

  • 42.
    Beukes, Eldre W.
    et al.
    Anglia Ruskin Univ, England.
    Manchaiah, Vinaya
    Linköping University, Department of Behavioural Sciences and Learning, Disability Research. Linköping University, Faculty of Arts and Sciences. Linköping University, The Swedish Institute for Disability Research. Lamar Univ, TX 77710 USA; Audiol India, India; Manipal Univ, India.
    Andersson, Gerhard
    Linköping University, Department of Behavioural Sciences and Learning, Psychology. Linköping University, Faculty of Arts and Sciences. Karolinska Inst, Sweden.
    Allen, Peter M.
    Anglia Ruskin Univ, England; Anglia Ruskin Univ, England.
    Terlizzi, Paige M.
    Lamar Univ, TX 77710 USA.
    Baguley, David M.
    Anglia Ruskin Univ, England; Nottingham Biomed Res Ctr, England; Univ Nottingham, England.
    Situationally influenced tinnitus coping strategies: a mixed methods approach2018In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 24, p. 2884-2894Article in journal (Refereed)
    Abstract [en]

    Purpose: The primary aim of this study was to identify coping strategies used to manage problematic tinnitus situations. A secondary aim was to determine whether different approaches were related to the level of tinnitus distress, anxiety, depression, and insomnia experienced. Materials and methods: A cross-sectional survey design was implemented. The study sample was adults interested in undertaking an Internet-based intervention for tinnitus. Self-reported measures assessed the level of tinnitus distress, depression, anxiety, and insomnia. An open-ended question was used to obtain information about how problematic tinnitus situations were dealt with. Responses were investigated using qualitative content analysis to identify problematic situations. Further data analysis comprised of both qualitative and quantitative methods. Results: There were 240 participants (137 males, 103 females), with an average age of 48.16 years (SD: 22.70). Qualitative content analysis identified eight problematic tinnitus situations. Participants had either habituated to their tinnitus (7.9%), used active (63.3%), or passive (28.8%) coping styles to manage these situations. Those who had habituated to tinnitus or used active coping strategies had lower levels of tinnitus distress, anxiety, and depression. Conclusions: The main problematic tinnitus situations for this cohort were identified. Both active and passive coping styles were applied to approach these situations. The coping strategies used most frequently and utilised in the widest range of problematic situations were using sound enrichment and diverting attention.

  • 43.
    Bhambhani, Yagesh
    et al.
    Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada.
    Mactavish, Jennifer
    Faculty of Kinesiology and Recreation Management, University of Manitoba, Winnipeg, Canada.
    Warren, Sharon
    Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada.
    Thompson, Walter R.
    Department of Kinesiology and Health, Georgia State University, Atlanta, GA, United States.
    Webborn, Anthony
    Sussex Centre for Sport and Exercise Medicine, Chelsea School Research Centre, University of Brighton, United Kingdom.
    Bressan, Elizabeth
    Department of Sport Science, Stellenbosch University, South Africa.
    De Mello, Marco Tuilo
    Medicina e Biologia Do Sono, Universidade Federal de Sao Paulo, Sao Paulo, Brazil.
    Tweedy, Sean
    School of Human Movement Studies, University of Queensland, Brisbane, Australia.
    Malone, Laurie
    Lakeshore Foundation, Research and Education, Birmingham, AL, United States.
    Fröjd, Kennet
    University of Gävle, Faculty of Health and Occupational Studies, Department of Health and Caring Sciences, Sports and health. Swedish Development Centre for Disability and Sport.
    Van De Vliet, Peter
    International Paralympic Committee, Bonn, Germany.
    Vanlandewijck, Yves
    Faculty of Kinesiology and Rehabilitation Sciences, Catholique University, Leuven, Belgium.
    Boosting in athletes with high-level spinal cord injury: Knowledge, incidence and attitudes of athletes in paralympic sport2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no 26, p. 2172-2190Article in journal (Refereed)
    Abstract [en]

    Autonomic dysreflexia (AD) is unique to individuals with spinal injuries (SCI) at T6 or above and can be voluntarily induced. Although AD improves wheelchair racing performance in some athletes, it also elicits exaggerated blood pressure, which could be dangerous. The International Paralympic Committee considers AD doping and banned its use. Purpose. The purpose of this study is to evaluate AD knowledge, incidence and attitudes (KIA) of Paralympians with SCI. Methods. An existing questionnaire was modified to include questions of AD KIA, validated by three experts and piloted with a small sample. It was administered on-line, mailed to members of a scientific network and distributed during the Beijing Paralympic Games. Fisher Exact test was used to evaluate differences across gender, injury and education. Results. Of 99 participants, 54.5% had previously heard of AD while 39.4% were unaware; 16.7%, all males, had used AD to enhance performance. Participants reported that AD was (1) useful for middle (78.6%) and long distance (71.4%), marathon (64.3%) and wheelchair rugby (64.3%); (2) somewhat dangerous (48.9%), dangerous (21.3%) or very dangerous (25.5%) to health. Results were not influenced by age, injury level or injury duration. Conclusions. Findings indicate the need for educational programmes directed towards enhancing the AD knowledge of rehabilitation professionals, coaches and trainers working with SCI individuals.

  • 44.
    Biguet, Gabriele
    et al.
    Department of Neurobiology, Care Sciences and Society, division of Physiotherapy, Karolinska institutet.
    Nilsson Wikmar, Lena
    Department of Neurobiology, Caring Sciences and Society, Division of Physiotherapy, Karoliniska Institutet.
    Bullington, Jennifer
    Ersta Sköndal University College, Department of Health Care Sciences.
    Flink, Berit
    Department of Neurobiology, Care Sciences and Society, Division of Physiotherapy, Karolinska Institutet.
    Löfgren, Monika
    Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet.
    Meanings of "acceptance" for patients with long-term pain when starting rehabilitation2016In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 38, no 13, p. 1257-1267Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The study aimed to elucidate the meaning of acceptance in relation to the lived body and sense of self when entering a pain rehabilitation programme.

    METHODS: Six women and three men with long-term pain were interviewed. The interviews were analysed according to interpretative phenomenological analysis.

    RESULTS: The analysis revealed three different meaning structures, first: acceptance as a process of personal empowerment, "the only way forward". Here, the individuals expressed that the body felt integrated: a trusting cooperation between self and body gave rise to hope. Second: acceptance as an equivocal project, a possible but challenging way forward. The hopeful insight was there, acknowledging that acceptance was the way to move forward, but there was also uncertainty and doubt about one's ability with a body ambiguous and confusing, difficult but important to understand. Third, in acceptance as a threat and a personal failure, "no way forward" the integration of the aching body in sense of self was impossible and pain was incomprehensible, unacceptable and unfair. Pain was the cause of feeling stuck in the body, affecting the sense of self and the person's entire life.

    CONCLUSIONS: The meaning of acceptance was related to acceptance of the persistency of pain, to how the individual related to the lived body and the need for changes in core aspects of self, and to the issue of whether to include others in the struggle of learning to move on with a meaningful life. Implications for Rehabilitation Healthcare professionals should be aware that individuals with long-term pain conceptualize and hold different meanings of acceptance when starting rehabilitation; this should be considered and addressed in rehabilitation programmes. The meaning given to acceptance is related to the experience of the lived body and the sense of self, as well as to getting legitimization/acceptance by others; therefore these aspects need to be considered during rehabilitation. The process of achieving acceptance seems to embrace different processes which can be understood as, and facilitated by, an embodied learning process. The bodily existential challenges presented in the present study, for example to develop an integrated and cooperative relationship with the painful body, can inspire health professionals to develop interventions and communication strategies focusing on the lived body. A wide range of competencies in rehabilitation clinics seems to be needed.

  • 45.
    Bjornsdottir, Sigrun Vala
    et al.
    Univ Iceland, Fac Med, Ctr Publ Hlth Sci, Reykjavik, Iceland;HNLFI Rehabil Clin, Hverageroi, Iceland.
    Triebel, Jan
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Surgical Sciences, Orthopaedics. HNLFI Rehabil Clin, Hverageroi, Iceland.
    Arnljotsdottir, Margret
    HNLFI Rehabil Clin, Hverageroi, Iceland.
    Tomasson, Gunnar
    Univ Iceland, Fac Med, Ctr Publ Hlth Sci, Reykjavik, Iceland.
    Valdimarsdottir, Unnur Anna
    Univ Iceland, Fac Med, Ctr Publ Hlth Sci, Reykjavik, Iceland;Harvard Sch Publ Hlth, Dept Epidemiol, Boston, MA USA.
    Long-lasting improvements in health-related quality of life among women with chronic pain, following multidisciplinary rehabilitation2018In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 40, no 15, p. 1764-1772Article in journal (Refereed)
    Abstract [en]

    Purpose:

    To determine whether observed health-related quality-of-life improvements after four-week traditional multidisciplinary pain management program and additional neuroscience education and mindfulness-based cognitive therapy for chronic pain are sustained at six-month follow-up.

    Method:

    This observational longitudinal follow-up study, with complete follow-up of 75 women, 61.5% of initial traditional approach group (treated 2001-2005) and 56 (62.2%) receiving the new approach (treated 2006-2009). Pain intensity and quality of life were measured at baseline and six months after interventions. Analysis of variance (ANOVA) and paired samples t-tests were used for statistical analysis.

    Results:

    Both groups showed sustained improvements in pain intensity (traditional approach = -10.6 [p < 0.001]; new approach = -14.5 [p < 0.001]) and quality of life (traditional approach = 6.4 [p < 0.001]; new approach = 6.9 [p < 0.001]). Sleep was not sustained among traditional approach group (change = 2.4 [p = 0.066]), whereas all other domains among both groups were sustained. Significant decline was observed from discharge to six month among both groups with the exception of the sleep domain among the traditional approach group, pain intensity among the new approach and financial status among both groups. No baseline differences were revealed between responders and nonresponders.

    Conclusions:

    Multidisciplinary interventions for women with chronic pain conditions improved quality of life and pain intensity with lasting improvements observed half a year after treatment completion.

  • 46.
    Björck-Åkesson, E
    et al.
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Wilder, J
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Granlund, M
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Pless, M
    Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden.
    Simeonsson, R
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Adolfsson, M
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Almqvist, L
    School of Health Sciences, Jönköping University, Jönköping, Sweden.
    Augustine, L
    Swedish Institute of Public Health, Östersund, Sweden.
    Klang, N
    Academy for Education, Communication and Culture, Mälardalen University, Västerås, Sweden.
    Lillvist, Anne
    Academy for Education, Communication and Culture, Mälardalen University, Västerås, Sweden.
    The International Classification of Functioning, Disability and Health and the version for children and youth as a tool in child habilitation/early childhood intervention - feasibility and usefulness as a common language and frame of reference for practice2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no S1, p. S125-S138Article in journal (Refereed)
    Abstract [en]

    Early childhood intervention and habilitation services for children with disabilities operate on an interdisciplinary basis. It requires a common language between professionals, and a shared framework for intervention goals and intervention implementation. The International Classification of Functioning, Disability and Health (ICF) and the version for children and youth (ICF-CY) may serve as this common framework and language. This overview of studies implemented by our research group is based on three research questions: Do the ICF-CY conceptual model have a valid content and is it logically coherent when investigated empirically? Is the ICF-CY classification useful for documenting child characteristics in services? What difficulties and benefits are related to using ICF-CY model as a basis for intervention when it is implemented in services? A series of studies, undertaken by the CHILD researchers are analysed. The analysis is based on data sets from published studies or master theses. Results and conclusion show that the ICF-CY has a useful content and is logically coherent on model level. Professionals find it useful for documenting children's body functions and activities. Guidelines for separating activity and participation are needed. ICF-CY is a complex classification, implementing it in services is a long-term project.

  • 47.
    Björck-Åkesson, Eva
    et al.
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Wilder, Jenny
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Granlund, Mats
    Jönköping University, School of Health and Welfare, HHJ. CHILD. Jönköping University, School of Education and Communication, HLK, CHILD.
    Pless, Mia
    Simeonsson, Rune
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Adolfsson, Margareta
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Almqvist, Lena
    Jönköping University, School of Education and Communication, HLK, CHILD.
    Augustine, Lilly
    Jönköping University, School of Health and Welfare, HHJ. CHILD.
    Klang, Nina
    Lillvist, Anne
    The international classification of functioning, disability and health and the version for children and youth as a tool in child habilitation/early childhood intervention: feasibility and usefulness as a common language and frame of reference for practice2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no S1, p. 125-138Article in journal (Refereed)
    Abstract [en]

    Early childhood intervention and habilitation services for children with disabilities operate on an interdisciplinary basis. It requires a common language between professionals, and a shared framework for intervention goals and intervention implementation. The International Classification of Functioning, Disability and Health (ICF) and the version for children and youth (ICF-CY) may serve as this common framework and language. This overview of studies implemented by our research group is based on three research questions: Do the ICF-CY conceptual model have a valid content and is it logically coherent when investigated empirically? Is the ICF-CY classification useful for documenting child characteristics in services? What difficulties and benefits are related to using ICF-CY model as a basis for intervention when it is implemented in services? A series of studies, undertaken by the CHILD researchers are analysed. The analysis is based on data sets from published studies or master theses. Results and conclusion show that the ICF-CY has a useful content and is logically coherent on model level. Professionals find it useful for documenting children's body functions and activities. Guidelines for separating activity and participation are needed. ICF-CY is a complex classification, implementing it in services is a long-term project.

  • 48.
    Björck-Åkesson, Eva
    et al.
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Wilder, Jenny
    School of Health Sciences, Jönköping University, Jönköping, Sweden .
    Granlund, Mats
    School of Health Sciences, Jönköping University, Jönköping, Sweden .
    Pless, Mia
    Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden .
    Simeonsson, Rune
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Adolfsson, Margareta
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Almqvist, Lena
    Mälardalen University, School of Health, Care and Social Welfare. Mälardalens högskola.
    Klang, Nina
    Mälardalen University, School of Education, Culture and Communication.
    Lillvist, Anne
    Mälardalen University, School of Education, Culture and Communication.
    The International Classification of Functioning, Disability and Health and the version for children and youth as a tool in child habilitation/early childhood intervention: Feasibility and usefulness as a common language and frame of reference for practice2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no SUPPL. 1, p. 125-138Article in journal (Refereed)
    Abstract [en]

     Early childhood intervention and habilitation services for children with disabilities operate on an interdisciplinary basis. It requires a common language between professionals, and a shared framework for intervention goals and intervention implementation. The International Classification of Functioning, Disability and Health (ICF) and the version for children and youth (ICF-CY) may serve as this common framework and language. This overview of studies implemented by our research group is based on three research questions: Do the ICF-CY conceptual model have a valid content and is it logically coherent when investigated empirically? Is the ICF-CY classification useful for documenting child characteristics in services? What difficulties and benefits are related to using ICF-CY model as a basis for intervention when it is implemented in services? A series of studies, undertaken by the CHILD researchers are analysed. The analysis is based on data sets from published studies or master theses. Results and conclusion show that the ICF-CY has a useful content and is logically coherent on model level. Professionals find it useful for documenting children's body functions and activities. Guidelines for separating activity and participation are needed. ICF-CY is a complex classification, implementing it in services is a long-term project

  • 49.
    Björck-Åkesson, Eva
    et al.
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Wilder, Jenny
    School of Health Sciences, Jönköping University, Jönköping, Sweden .
    Granlund, Mats
    School of Health Sciences, Jönköping University, Jönköping, Sweden .
    Pless, Mia
    Department of Public Health and Caring Sciences, Uppsala University, Uppsala, Sweden .
    Simeonsson, Rune
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Adolfsson, Margareta
    School of Education and Communication, Jönköping University, Jönköping, Sweden.
    Almqvist, Lena
    Swedish Institute of Public Health, Östersund, Sweden.
    Klang, Nina
    Academy for Education, Communication and Culture, Mälardalen University, Västerås, Sweden.
    Lillvist, Anne
    Academy for Education, Communication and Culture, Mälardalen University, Västerås, Sweden.
    The International Classification of Functioning, Disability and Health and the version for children and youth as a tool in child habilitation/early childhood intervention: Feasibility and usefulness as a common language and frame of reference for practice2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no SUPPL. 1, p. 125-138Article in journal (Refereed)
    Abstract [en]

    Early childhood intervention and habilitation services for children with disabilities operate on an interdisciplinary basis. It requires a common language between professionals, and a shared framework for intervention goals and intervention implementation. The International Classification of Functioning, Disability and Health (ICF) and the version for children and youth (ICF-CY) may serve as this common framework and language. This overview of studies implemented by our research group is based on three research questions: Do the ICF-CY conceptual model have a valid content and is it logically coherent when investigated empirically? Is the ICF-CY classification useful for documenting child characteristics in services? What difficulties and benefits are related to using ICF-CY model as a basis for intervention when it is implemented in services? A series of studies, undertaken by the CHILD researchers are analysed. The analysis is based on data sets from published studies or master theses. Results and conclusion show that the ICF-CY has a useful content and is logically coherent on model level. Professionals find it useful for documenting children's body functions and activities. Guidelines for separating activity and participation are needed. ICF-CY is a complex classification, implementing it in services is a long-term project

  • 50.
    Björck-Åkesson, Eva
    et al.
    Högskolan för lärande och kommunikation, Högskolan Jönköping.
    Wilder, Jenny
    Akademin för utbildning, kultur och kommunikation, Mälardalens högskola.
    Granlund, Mats
    Hälsohögskolan, Högskolan Jönköping.
    Pless, Mia
    Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences.
    Simeonsson, Rune J.
    University of South Carolina/Chapel Hill.
    Adolfsson, Margareta
    Högskolan för lärande och kommunikation, Högskolan Jönköping.
    Almqvist, Lena
    Akademin för hållbar samhälls- och teknikutveckling, Mälardalens högskola.
    Augustine, Lilly
    Statens Folkhälsoinstitut.
    Klang, Nina
    Akademin för utbildning, kultur och kommunikation, Mälardalens högskola.
    Lillvist, Anne
    Akademin för utbildning, kultur och kommunikation, Mälardalens högskola.
    The International Classification of Functioning, Disability and Health and the version for children and youth as a tool in child habilitation/early childhood intervention: feasibility and usefulness as a common language and frame of reference for practice.2010In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 32, no S1, p. S125-S138Article in journal (Refereed)
    Abstract [en]

    Early childhood intervention and habilitation services for children with disabilities operate on an interdisciplinary basis. It requires a common language between professionals, and a shared framework for intervention goals and intervention implementation. The International Classification of Functioning, Disability and Health (ICF) and the version for children and youth (ICF-CY) may serve as this common framework and language. This overview of studies implemented by our research group is based on three research questions: Do the ICF-CY conceptual model have a valid content and is it logically coherent when investigated empirically? Is the ICF-CY classification useful for documenting child characteristics in services? What difficulties and benefits are related to using ICF-CY model as a basis for intervention when it is implemented in services? A series of studies, undertaken by the CHILD researchers are analysed. The analysis is based on data sets from published studies or master theses. Results and conclusion show that the ICF-CY has a useful content and is logically coherent on model level. Professionals find it useful for documenting children's body functions and activities. Guidelines for separating activity and participation are needed. ICF-CY is a complex classification, implementing it in services is a long-term project.

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