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.

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.

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.

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.

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.

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.

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.

Objective: The aim of this study was to clarify the association of scoliosis and windswept hips with immobility, lying position, and time in lying, in adults with cerebral palsy (CP).

Methods: This cross-sectional study included 830 adults (469 males and 361 females) with a diagnosis of CP, 16-73 years, and classified at levels I-V according to the Gross Motor Function Classification System (GMFCS). Subjects' Gross motor function classification system level, presence and severity of scoliosis, hip and knee joint range of movement, lying position, postural ability in lying, and time in lying were used to identify connections between them.

Results: Adults who are immobile in the lying position have higher odds of both scoliosis and windswept hips. Spending more than 8 h daily in the same lying position, increased the odds of having scoliosis, while lying solely in a supine position, resulted in higher odds of windswept hips.

Conclusions: The "preferred" habitual posture frequently observed in immobile adults with CP, leads to established distortion of their body shape. The results indicate the need for early introduction of appropriate posture control, in immobile individuals with CP, from a young age.

IMPLICATIONS FOR REHABILITATION The preferred posture, observed in immobile adults with cerebral palsy, leads to a distortion of their body shape. One in four adults with cerebral palsy use only one position when in bed. The results indicate the need for early introduction of appropriate posture control in individuals unable to change position.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Purpose: To describe how managers of employees on sick-leave, due to chronic pain conditions, experience participating in a three-party meeting using the Demand and Ability Protocol (DAP) in the return-to-work process.

Materials and methods: This study is based on individual semi-structured interviews with 17 managers of employees with chronic pain. Interviews were conducted after participating in a three-party meeting including the employee, manager, and a representative from the rehabilitation team. The data were analyzed using thematic analysis with an inductive approach.

Results: Two main themes were identified–“to converse with a clear structure and setup” and “to be involved in the employee’s rehabilitation.” The first theme describe experiences from the conversation, and the second theme reflected the managers’ insights when being involved in the employee’s rehabilitation. The themes comprise 11 sub-themes describing how the DAP conversation and the manager′s involvement in the rehabilitation may influence the manager, the manager-employee relationship, and the organization.

Conclusions: This study show, from a manager's perspective, how having a dialogue with a clear structure and an active involvement in the employee’s rehabilitation may be beneficial for the manager-employee relationship. Insights from participating in the DAP may also be beneficial for the organization.

IMPLICATIONS FOR REHABILITATION

* A structured dialogue between the employee, employer, and rehabilitation supports the return to work (RTW) process

* A structured dialogue and collaboration may strengthen the relationship between the manager and employee

* An active engagement of managers in the employeès RTW process is beneficial for the manager-employee relationship, and for the organisation

* Healthcare professionals should collaborate with the workplace to promote participation of managers. © 2022 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.

Purpose: To describe how managers of employees on sick-leave, due to chronic pain conditions, experience participating in a three-party meeting using the Demand and Ability Protocol (DAP) in the return-to-work process.

Materials and methods: This study is based on individual semi-structured interviews with 17 managers of employees with chronic pain. Interviews were conducted after participating in a three-party meeting including the employee, manager, and a representative from the rehabilitation team. The data were analyzed using thematic analysis with an inductive approach.

Results: Two main themes were identified - "to converse with a clear structure and setup" and "to be involved in the employee's rehabilitation." The first theme describe experiences from the conversation, and the second theme reflected the managers' insights when being involved in the employee's rehabilitation. The themes comprise 11 sub-themes describing how the DAP conversation and the manager ' s involvement in the rehabilitation may influence the manager, the manager-employee relationship, and the organization.

Conclusions: This study show, from a manager's perspective, how having a dialogue with a clear structure and an active involvement in the employee's rehabilitation may be beneficial for the manager-employee relationship. Insights from participating in the DAP may also be beneficial for the organization.

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.

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.

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.

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.

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.

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.

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.

Purpose To explore multi-professional teamwork in relation to the physical environment in three newly built or renovated stroke units. Materials and methods An observational study was undertaken. The participants were all staff members of a multi-professional team working in the reviewed stroke units. The data were collected using behavioural mapping and semi-structured observations, and they were analysed by content analysis and descriptive statistics. Results Out of all the observations in the behavioural mapping, very few were of two or more members from the team together with a patient. None of the included stroke units had a co-location for all the members of the multi-professional team. Three main categories emerged from the analysis of the interviews: (i) the hub of the unit; (ii) the division of places; and (iii) power imbalance. All the categories reflected the teamwork in relation to parts of the physical environment. Conclusion The design of the physical environment is important for multi-professional teamwork. Emphasis must be placed on better understanding the impact of the physical environment and on incorporating the evidence related to multi-professional teamwork during the design of stroke units.

Purpose: The aim of this work was to qualitatively explore the personal perspectives of prosthetic and orthotic users, in the context of their past and present experiences and understand their insights for the future.

Materials and Methods: A narrative exploration study design employing a phenomenological approach was used. Semi-structured interviews were conducted with three female and two male prosthetic and orthotic users from Australia and the United Kingdom. Interviews were analysed, coded and key themes and sub-themes identified. 

Results: Three themes were identified. The Maximising Opportunity theme linked sub-themes of recreation and pushing boundaries.  The Health Care Network theme included sub-themes of communication, peer support and building a team. The final theme, Changes over time, included sub-themes of disability perception, advice and advancements over time. 

Conclusion: Prosthetic and orthotic users identified there had been vast changes in disability perception, disability rights, and their role in the health care system, along with the variety of technology and materials available. Key findings were that prosthetic and orthotic users want to be listened to, considered central to the health care team, and had a deep understanding of their own health care needs.

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.

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.

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.

Purpose

Various stakeholders contribute to the development of healthy physical activity habits in adolescents with autism spectrum disorder (ASD). Parents and stakeholders seek collaborative actions but little is still known about such efforts. The purpose of this study was thus to explore how professionals from different services experience stakeholder collaboration when promoting participation in physical activity for these adolescents.

Method

Five focus group discussions were held with 17 professionals from education, health care, community, and sports organizations, engaged in the promotion of physical activity in adolescents with ASD. The data were analyzed with qualitative content analysis.

Results

The discussions revolved around a central theme: Collaboration is needed to promote physical literacy among adolescents with ASD. The professionals though experienced that this collaboration was hampered by the low priority given to physical activity issues within different organizations, by limited resources, lack of knowledge, and unclear roles.

Conclusions

Notwithstanding the professionals? different roles, all agreed that physical activity issues need to be prioritized and that each stakeholder needs to acknowledge the shared responsibility of collaboration. However, more clear routines for collaboration that include joined efforts but also highlight the organization-specific responsibilities might enhance the collaborative efforts.

IMPLICATIONS FOR REHABILITATIONI

n-depth understanding of both the adolescents? needs and the environments in which physical activity is promoted is required if participation in physical activity among adolescents with ASD is to be enhanced.Families and professionals within different organizations need to be supported to collaborate when mapping and meeting the adolescents? physical activity needs. Issues regarding developing physical activity habits need to be prioritized.Professionals, such as education, health, and community professionals who are important for the promotion of healthy physical activity habits need to be included in multi-stakeholder meetings.

PURPOSE: Various stakeholders contribute to the development of healthy physical activity habits in adolescents with autism spectrum disorder (ASD). Parents and stakeholders seek collaborative actions but little is still known about such efforts. The purpose of this study was thus to explore how professionals from different services experience stakeholder collaboration when promoting participation in physical activity for these adolescents.

METHOD: Five focus group discussions were held with 17 professionals from education, health care, community, and sports organizations, engaged in the promotion of physical activity in adolescents with ASD. The data were analyzed with qualitative content analysis.

RESULTS: . The professionals though experienced that this collaboration was hampered by the low priority given to physical activity issues within different organizations, by limited resources, lack of knowledge, and unclear roles.

CONCLUSIONS: Notwithstanding the professionals' different roles, all agreed that physical activity issues need to be prioritized and that each stakeholder needs to acknowledge the shared responsibility of collaboration. However, more clear routines for collaboration that include joined efforts but also highlight the organization-specific responsibilities might enhance the collaborative efforts.

• In-depth understanding of both the adolescents' needs and the environments in which physical activity is promoted is required if participation in physical activity among adolescents with ASD is to be enhanced.
• Families and professionals within different organizations need to be supported to collaborate when mapping and meeting the adolescents' physical activity needs.
• Issues regarding developing physical activity habits need to be prioritized.
• Professionals, such as education, health, and community professionals who are important for the promotion of healthy physical activity habits need to be included in multi-stakeholder meetings.

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.

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.

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.

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.

Background

The ICF provides a common scientific language for the study of health and functioning. Adolescent mental health, operationalized as engagement in life situations, is one aspect of functioning. Engagement as mental health has a bi-directional relation with environmental factors.

Aim

To test the statistical utility of the International Classification of Functioning (ICF) classification in coding adolescent mental health and mental health problems.

Methods

Using data measuring mental health in a representative Swedish sample of 12-13-year-olds linking responses to the classification codes. The internal structure of the classification system constructs was tested using factor analysis.

Results

A factorial solution could be found for most chapters indicating that the ICF framework and coding system could be used; however, the variance explained was quite low. Linking worked better at code-level, rather than chapter level. Items measuring risk behavior or risk factors are loaded in separate constructs.

Conclusions

When coding items for statistical purposes, code-level rather than chapter level is to be preferred. Also, participation in risk behavior loads in separate factors indicating that these behaviors are separate from other types of participation.

Implications for rehabilitation

Considering some challenges with varying level of detail in the ICF-CY's chapters, the framework can be used to identify the content of mental health questionnaires to be used in rehabilitation. To provide more detailed information in rehabilitation addressing mental health, a code-level solution is more appropriate than a chapter level solution. Despite the use of same ICF-CY codes, negative participation, i.e., risk behavior, measures a different dimension than positive participation, is especially relevant in rehabilitation addressing mental health.

PURPOSE: Having a neurodevelopmental disorder (NDD) increases the risk of mental health problems and lower participation. We investigated the trajectories of mental health problems and participation in adolescents with NDD and compared these with trajectories for peers without NDD. In addition, the relationship between participation, mental health (well-being), and mental health problems were investigated.

MATERIALS AND METHODS: Data from a Swedish longitudinal survey study (LoRDIA) was used and adolescents with and without self-reported NDD were followed from 12/13 to 17 years, in three waves. Mental health problems were measured using the Strength and Difficulties Questionnaire, and well-being was measured with the Mental Health Continuum short form.

RESULTS: Adolescents with NDD experience more mental health problems than adolescents without NDD. Hyperactivity, a key feature of NDD, remains stable, while emotional problems and psychosomatic complaints, increase over time for girls, independent of NDD. Participation is stable over time but is more related to well-being than to NDD or mental health problems.

CONCLUSIONS: Gender is an important factor with girls exhibiting more problems. Mental health explains more of the variation in participation than mental health problems and NDD. Probably participation intervention can enhance mental health which may protect from mental health problems.

Implications for rehabilitation

• Mental health, i.e., emotional-, social-, and psychological well-being is more strongly related to participation and to reduced levels of mental health problems than having an NDD or not, thus assessing mental health separately from measuring NDD is important.
• Interventions focusing on participation may lead to higher mental health and having high mental health (flourishing) may facilitate participation.
• Girls with self-reported NDD seem to have a higher burden of mental health problems, especially if they also are languishing, i.e., having low mental health, therefore a strong focus on this group is needed both in research and clinical practice.
• Half of all adolescents are flourishing, independently of NDD or not, even if they are experiencing some symptoms of mental health problems, adolescents with NDD who are also languishing, have much higher ratings of mental health problems.

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.

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.

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.

Purpose: The aim was to culturally validate a questionnaire about children's/youth's participation to be used in a Swedish context. Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed. Results: The interviews provided support for the questionnaire's relevance by being a tool to assess important aspects of participation, to gain insights into one's own/the child's participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where "parades" are unusual in Sweden and therefore removed, while "singing in choir" was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase children's participation.

Purpose: The aim was to culturally validate a questionnaire about childrens/youths participation to be used in a Swedish context. Methods: FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed. Results: The interviews provided support for the questionnaires relevance by being a tool to assess important aspects of participation, to gain insights into ones own/the childs participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where "parades" are unusual in Sweden and therefore removed, while "singing in choir" was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account. Conclusions: The questionnaire can be used for establishing meaningful goals and to potentially increase childrens participation.

Purpose 

The aim was to culturally validate a questionnaire about children's/youth's participation to be used in a Swedish context.

Methods

FUNDES-Child, based on the well-established CASP, was chosen. Questions about engagement and hindering factors were added to the existing questions about frequency and independence in 20 activity areas. Using a qualitative, explorative design, 16 interviews with children/youths/caregivers were made to explore opinions about the questionnaire. Follow-up interviews confirmed the result of the revised questionnaire. Qualitative content analysis was performed.

Results

The interviews provided support for the questionnaire's relevance by being a tool to assess important aspects of participation, to gain insights into one's own/the child's participation, and to promote ideas about what causes the degree of participation. To achieve comprehensiveness, no activity area was found to be missing nor superfluous. However, some examples were needed to be modified where "parades" are unusual in Sweden and therefore removed, while "singing in choir" was added. In search for comprehensibility, opinions about the layout of the first version were raised and a varying degree of understanding of wording and concepts were found and thus taken into account.

Conclusions

The questionnaire can be used for establishing meaningful goals and to potentially increase children's participation.

Implications for rehabilitation

• Participation is of great importance for children's functioning, well-being, and development.
• Cultural validation of well-established participation questionnaires is a priority and questions about important aspects of participation need to be included.
• Interviews with children/youth and caregivers guided revisions to reach relevance, comprehensiveness, and comprehensibility of the Swedish FUNDES-Child (FUNDES II-SE).
• Children/youths, caregivers, and others may increase their awareness concerning the child's/youth's participation by responding to the questionnaire.

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.

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.

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.