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.

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 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: 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: To describe how parents with deafblindness experience parenting and family life.

MATERIALS AND METHODS: This a qualitative interview study. Fourteen parents with deafblindness were interviewed. Most were mothers (n = 10), with ages ranging between 33 and 57 years (mean 46 years). Interviews were transcribed, and the analysis was done using inductive qualitative content analysis.

RESULTS: The analysis resulted in the overarching theme, 'Living family life as a parent with deafblindness is not a walk in the park, but it is rewarding', and three subthemes, 'Being a competent parent despite having deafblindness', 'Needing support to fulfil my parental obligations' and 'Parenting is a struggle due to my deafblindness'. The results encompass many experiences and feelings and illustrate the complex reality of these parents in their parental role and family life.

CONCLUSION: The parents expressed their joy in being parents, but these feelings were intertwined with negative aspects of being unable to take on the desired responsibility or not receiving the necessary support. When requested, tailored support should be offered from social services, health care and rehabilitation services in order for parents with deafblindness to take on the parental responsibility they want and to be able to actively participate in family life.

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: 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.

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.

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.

PURPOSE: The study purpose was to, with the help of ICF and the CPS model, describe and explain patterns of co-occurring problems with participation in everyday life activities, body functioning and environment for children who completed brain tumor treatment.

MATERIALS AND METHODS: Hospital, habilitation and school records for nine children (5-11 yrs.) diagnosed with brain tumor, were retrospectively reviewed for everyday problems after treatment completion. These problems were linked to ICF codes. Median code distribution within ICF constructs participation, body function, body structure, activity, and environment were calculated to generate typical (close to median) and atypical (distant from median) patterns of problems on individual and group levels. Two children were in-depth analyzed with collaborative problem-solving (CPS) model to identify participation problems and plausible explanations.

RESULTS: In total, 4543 ICF linked codes revealed similarities and differences between individuals. The selected child-cases displayed educational challenges and peer-relational problems. The ICF codes related to activity, body function and environment revealed plausible explanations for the children's documented problems with participation in everyday life.

CONCLUSIONS: The combination of ICF and CPS can provide a comprehensive view of the child's problems and guide development of participation in everyday life-focused interventions for children treated for brain tumors.Implications for rehabilitationCare should be guided by interventions and support directed at individual children and their everyday life.The International Classification of Functioning, Disability and Health (ICF) framework can support identification of the individual child's patterns of problems and how these affects the child's everyday life.It is recommended to start by identifying participation problems when using ICF to identify and describe problems in children's natural settings.The collaborative problem-solving model can guide healthcare, habilitation and school services when identifying and acting on typical and atypical problem patterns experienced by these children.

PURPOSE: The aim of the study was to elucidate experiences of living with muscular dystrophy in terms of consequences for activity over 10 years. METHODS: The study population was identified in a prevalence study in a county of Sweden. Forty-six persons of this cohort with MD were interviewed. A qualitative research approach was chosen. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) was used for categorization. RESULTS: Nearly all the subjects experienced a deterioration of physical capacity. Most obvious were the restrictions on mobility and increased fatigue and feebleness. The persons described psychosocial consequences of the muscular dystrophy as well as stigma when the disability had become more obvious. In spite of reported distress several persons experienced better psychological adaptation over time. The image of the future was often dark but several focus on today and avoid thoughts about the future. ICF showed some limitation with regard to temporal aspects, emotions and the subjective perspective. CONCLUSIONS: The knowledge of the trajectory with MD is important in order to offer the best possible treatment and support. Repeated assessment by ICF can serve as a valuable source of such knowledge, and a development of the classification would increase its usefulness in future analysis of functioning and disability.

Purpose: The aim of this study was to investigate the driving performance of drivers with autism spectrum disorders under complex driving conditions.

Method: Seventeen drivers with autism spectrum disorders and 18 typically developed drivers participated in a driving simulator trial. Prior to the assessment, participants completed the Driving Behaviour Questionnaire and measurements of cognitive and visual-motor ability. The driving simulation involved driving in an urban area with dense traffic and unpredictable events.

Results: In comparison with the typically developed group, drivers with autism spectrum disorders reported significantly more lapses in driving, committed more mistakes on the driving simulator, and were slower to react in challenging situations, such as driving through intersections with abrupt changes in traffic lights. However, they were also less likely to tailgate other vehicles, as measured by time-to-collision between vehicles, on the driving simulator.

Conclusions: The performances of licensed drivers with autism spectrum disorders appeared to be safer in respect to car-following distance but were poorer in their response to challenging traffic situations. Driver education for individuals with autism spectrum disorders should focus on quick identification of hazards, prompt execution of responses, and effective allocation of attention to reduce lapses in driving. 

Purpose: To conduct a systematic review of self- and proxy-report fatigue assessment tools used in studies of people with cerebral palsy (CP) of all ages, and to develop a fatigue assessment tool decision tree for clinicians and researchers.

Materials and methods: Five electronic databases (MEDLINE, PsycInfo, CINAHL, Web of Science and Cochrane) were searched to September 2021 to identify studies assessing self-reported fatigue in people with CP of any age. The assessment tools utilised were extracted and two reviewers appraised the tool characteristics, clinical utility and psychometric properties. A decision tree for selecting fatigue assessment tools was constructed.

Results: Ten assessment tools were identified across thirty-nine studies, three of which are valid and reliable for assessing fatigue severity and impact in people with CP. A four-level fatigue assessment tool decision tree was constructed. No valid and reliable tool for assessing cognitive fatigue was identified; responsiveness has not been evaluated in any tool for people with CP.

Conclusions: Physical fatigue screening and assessment tools for people with CP are available and are presented in our decision tree, however their utility as outcome measures remains unclear. Cognitive fatigue is understudied and poorly understood, further work is required in this area.

IMPLICATIONS FOR REHABILITATION 

• Current measurement tools to screen and assess physical fatigue in people with cerebral palsy (CP) are valid and reliable and are presented in our 4-level decision tree to guide assessment tool selection.
• The responsiveness of these measurement tools to screen and assess physical fatigue has not been evaluated, therefore their utility as outcome measures in people with CP is unclear.
• Cognitive fatigue is understudied and poorly understood in people with CP.
• Valid and reliable tools to assess cognitive fatigue in people with CP are not available.

Purpose: To evaluate long-term effects in self-perceived occupational performance and satisfaction in Activities of Daily Living (ADL) for patients with Whiplash Associated Disorders (WAD) with chronic pain in an interdisciplinary rehabilitation programme, and investigate patients' opinions of programme effects. Method: A mixed-method with sequential explanatory design was used. Fifty-three patients with WAD were followed-up 12 months after discharge. The Canadian Occupational Performance Measure was used to evaluate the change in ADL and the Multidimensional Pain Inventory for psychosocial functioning. Telephone interviews, based on five structured questions about the perceived impact of the rehabilitation programme, were made. Results: The 12-month follow-up showed significant ADL improvement (p<0.001). There was less interference in daily activities due to pain (p<0.01), and life control increased. More people were back to work. Interviews revealed the programme's environment as strengthening and safe, and participants felt they were met with respect. Key success factors were to be treated with respect to being part of the social context and to obtain new knowledge. Conclusions: The interdisciplinary rehabilitation programme had initiated a process of change towards a more active life for the participants. They had found a new way of managing their lives. Despite the absence of pain reduction, they managed ADL in a better way, had more life control and returned to work to a higher degree.Implications for RehabilitationChronic pain after WAD effects the entire life for many people.Long-term effects on activities of daily living, life control and work ability have shown positive results after an interdisciplinary rehabilitation programme based on behavioural and cognitive principles.The key success factors were to be treated with respect to being a part of a social context and to obtain new knowledge. 

Purpose: To analyse the cost-effectiveness of the activity-based Health Education Programme ’Discovering New Ways’ versus a standard Individual Programme. Method: Two-hundred and twenty-nine persons were randomized to either the Health Education Programme or an Individual Programme. The present study is based on 131 persons who participated in the 28-month follow-up. Costs for the low vision clinic were documented prospectively along with external costs. A cost-effectiveness analysis was done using cases with an improved level of perceived security in daily activities as the effectiveness measure. Results: The Health Education Programme led to significantly more cases with an improved level of perceived security (45 vs. 10%, CI 95%: 21-49, p value < 0.001) and the total social cost per treatment was lower (28 004 vs. 36 341 SEK). Taken separately the low vision clinic costs were slightly higher due to a higher prescription of assistive devices, but external costs were lower for the Health Education Programme compared to the Individual Programme, though neither of these differences was statistically significant. Conclusion: The results suggest that replacing the standard Individual Programme with the Health Education Programme ’Discovering New Ways’ is cost-effective as more persons experience increased security to a lesser total cost.

Purpose

This study describes the development of four age-based item code sets from WHO's International classification of functioning disability and health, children and youth version (ICF-CY). Given the continuing goal of universal implementation of the ICF-CY, a reduced set of codes was identified from more than 1600 codes to facilitate the use of the classification for clinical, research and policy applications of the ICF-CY

Methods

The ICF-CY developmental code sets were developed by consensus using the Delphi method. A multi-disciplinary group of international experts representing 27 countries from 5 WHO world regions completed a series of iterative online surveys to rate categories of child functioning essential for inclusion in the respective age-based code set.

Results

Four age-based code sets covering 37, 52, 60 and 57 codes across four domains of the ICF-CY were successfully derived with a high level of participant consensus. The code sets align with developmental theory and represent essential indicators of functioning defining key stages of child development.

Conclusion

The ICF-CY developmental code sets offer a common, universal language of childhood functioning and disability with global application for multidisciplinary research, clinical practice and policy.

Implications for rehabilitation

Broad umbrella terms, such as children with disabilities, neurodiversity and neurodevelopmental disabilities are widely used in the literature but not defined in a consistent, universal language.

Codes from the International Classification of Functioning, Disability and Health-Children and Youth Version (ICF-CY) offer a universal language of health and functioning.

ICF-CY item codes were developed by consensus for four age groups of children, providing a universal language of disability for:

• epidemiological studies of disability prevalence
• screening and assessment tools
• documenting intervention goals and outcomes

Purpose: Evidence is increasing for effective virtual reality therapy for motor rehabilitation for children with Cerebral Palsy. We assessed the feasibility of a virtual reality therapy mode of intervention, appropriateness of measures, and potential cost-effectiveness.

Methods: A 12-week, 2-group, parallel-feasibility trial (ISRCT 17624388) using Nintendo Wii FitTM at home. Children aged 5–16, with ambulatory Cerebral Palsy, who were able to follow simple instructions were randomised to two groups; one supported by physiotherapists (individualised activity programme), the other unsupported with children having free choice (control). Children were assessed in clinic at baseline, week 6, and week 12 by blinded assessors. Feasibility of the intervention was assessed via recruitment, adherence, and usefulness of measurement tools.

Results: Forty-four children were eligible (out of 48 approached): 31 consented, 30 were randomised, 21 completed the study; 10 in the supported group and 11 in the unsupported group. Nine children discontinued from tiredness, after-school activities, homework, surgery, technical difficulties or negative system feedback. The supported group completed 19 of 36 (IQR 5-35) possible sessions; the unsupported group 24 of 36 sessions (IQR 8-36). Gross Motor Function Measure scores varied by Cerebral Palsy severity after the intervention. There were no adverse events.

Conclusion: Virtual reality therapy offers potential as a therapeutic adjunct for children with Cerebral Palsy, warranting substantive confirmatory study. Gross Motor Function Measure, with modifications to improve sensitivity, appeared appropriate as a primary measure, with Timed up and Go test secondary. The intervention was inexpensive costing £20 per child. An explanatory trial to evaluate the clinical/cost-effectiveness of commercial system virtual reality therapy is feasible with minor methodological adaptation.

Implications for rehabilitation

• Home-based interactive computer gaming was feasible, safe and cost effective as a therapy adjunct.
• Discontinue if additional pressures are present: imminent surgery, family resilience to technical difficulties, negative system feedback, after-school activities.
• Change in Gross Motor Function Measurement scores varied by severity of Cerebral Palsy. 

Purpose:

To evaluate the feasibility and therapeutic effect of engaging children of differing neuromotor and cognitive ability in a virtual reality (VR) tabletop workspace designed to improve upper-limb function.

Method:

Single-subject experimental design with multiple baselines was employed. Four children with hemiplegia participated in VR-based training between nine and 19, 30-minute sessions, over three-four weeks. Outcomes were assessed from the perspective of the International Classification of Functioning, Disability and Health; considering body function, activity performance and participation. Upper-limb performance was assessed using system-measured variables (speed, trajectory and accuracy) and standardized tests. Trend analyses were employed to determine trends on system variables between baseline phase and treatment phases. Standardised measures were compared between pre- and post-training.

Results:

Two children made progress across system variables with some translation to daily activities. Performance of the other two children was more variable, however, they engaged positively with the system by the end of the treatment phase.

Conclusions:

The VR (RE-ACTION) system shows promise as an engaging rehabilitation tool to improve upper-limb function of children with hemiplegia, across ability levels. Trade-offs between kinematic variables should be considered when measuring improvements in movement skill. Larger trials are warranted to evaluate effects of augmented feedback, intensity and duration of training, and interface type to optimise the system's effectiveness.

Implications for Rehabilitation:

The RE-ACTION system shows promise as a relatively low-cost solution to support therapies for upper-limb function and activity participation for children with hemiplegia and associated conditions. The combination of goal-directed tasks, augmented feedback, and engaging exploratory environments is a potentially quite powerful rehabilitation solution for children. Increased task engagement supported positive outcomes of the International Classification of Functioning, Disability and Health - Children and Youth version, including body function and activity levels as well as enhanced participation. Larger experimental trials are required to test the capacity of the system to progress the skills of children with multiple disabilities.

PURPOSE: This review sought to answer the question "What are the barriers and facilitators influencing people's experience of return to work following spinal cord injury?"

METHODS: Studies that met the selection criteria were identified, presented and critically appraised using National Institute for Health and Care Excellence guidelines. Thematic synthesis was completed with studies possessing strong methodological rigor. Synthesis and interpretation involved three stages; coding of primary data; development of descriptive themes reflective of the primary data; and establishment of analytical themes to answer the review question.

RESULTS: Data from nine papers were included in the thematic synthesis. Several descriptive themes and three analytical themes were drawn from the data to answer the research question. Analytical themes included: a matrix of personal and environmental factors exists requiring complex navigation in order to create possibilities and opportunities for postinjury employment; the process of seeking or gaining employment shares a reciprocal relationship with the temporal nature of adjustment to spinal cord injury; and there is an intrinsic need for occupational engagement through paid employment.

CONCLUSIONS: Returning to or gaining employment after spinal cord injury is a fundamentally difficult experience for people. Multiple strategies are required to support the navigation of the process. There is, however, a need in people with spinal cord injury, to be a worker, and with that comes the inherent benefits of being employed. Implications for rehabilitation Returning to work should be a significant focus of spinal cord injury rehabilitation. Employment is both possible and health promoting following spinal cord injury. Multiple strategies are required to support people to navigate the return to work process. It is important to be cognizant of the individual motivations for being a worker and the complexity of the adjustment process. Spinal cord injury centers can provide a consistent and supportive framework and culture of positivity about employment after spinal cord injury.

Purpose:The Weekly Calendar Planning Activity is a performance test aiming to examine how subtle problems with executive functioning influence the performance of multi-step activities in daily life. The purpose of this study was to explore the Swedish version of the Weekly Calendar Planning Activity, regarding test-retest reliability and possible learning effects. Material and methods:Twenty-four adults with psychiatric, neurodevelopmental or mild intellectual disorders and with difficulties in executive functioning performed the test on three separate occasions, with two weeks apart. Test-retest reliability was determined using intraclass correlation coefficients. Possible learning effects were evaluated. The smallest detectable change was calculated to determine the precision of individual scores. Results and conclusion:The intraclass correlation coefficients between the first two test occasions were weak (0.42-0.66), but were acceptable to excellent (0.65-0.91) between test occasions 2 and 3. There was a considerable amount of random variation in the results, but little systematic variation, indicating no or possibly a small learning effect in the total number of accurately recorded appointments. This variation indicates a need to use two consecutive baseline measurements when the Swedish version of the Weelky Calendar Planning Acitivity is used as an outcome measure. Together, our results suggest that the Swedish version of the Weelky Calendar Planning Acitivity is a useful performance-based measure of how subtle problems in executive functioning affects activity performance.

Purpose:

The purpose of this study is to provide a description of the learning environment at Folk High School for participants with high-functioning autism and to examine their learning experience at Folk High School.

Methods:

A qualitative interview study was conducted with 21 participants who were enrolled at Folk High School which had been adapted to suit young adults with high-functioning autism. The interviews were analysed by means of a thematic content analysis which resulted in the identification of 6 themes related to learning experiences at Folk High School.

Results:

The participants enjoyed themselves and felt secure at Folk High School. They felt that they and their academic endeavours were suitably recognised, acknowledged, and understood. They reported that the teaching was suitably adapted for them and they felt that they could succeed in their studies. A frequent report that they made concerned their experience of clear structures in the teaching process and its predictability. The participants stated that Folk High School has the ability to satisfy each participant's needs, which entailed lower levels of perceived stress than what they had experienced in their previous schooling. The participants experienced personal development during their time at Folk High School.

Conclusions:

Folk High School, and its special character, is able to successfully satisfy the needs of participants with high-functioning autism. Many of the participants, for the first time in their lives, experienced a sense of inclusion in an educational system and felt that they could succeed in their studies. However, there exists a risk that they become institutionalised, which entails that the participants function well primarily in Folk High School's safe and caring environment.

Implications for rehabilitation

• A supportive environment including both formal and social learning is paramount for people with high-functioning autism.
• Individually adapted teaching that is structured and predictable improve the conditions under which they can focus on their studies and enjoy academic success.
• The teachers' relational competence and ability to show interest in each individual are crucial.
• Social- and special-pedagogic competencies need to co-exist so as to improve learning conditions.
• Internship/workplace training can provide an important social learning experience for participants, as they learn about themselves and others and as they develop their social competence.
• To practice living on one's own is a significant challenge, but it can create opportunities to learn about one?s self and to develop a sense of responsibility and other social skills.

Purpose: Environmental variables have been explored in studies of the development of young children with motor delays. Linking environmental variables to the International Classification of Functioning, Disability and Health – Children and Youth (ICF-CY), environmental factors (EFs) categories can provide a common language for documenting their contribution to developmental outcomes. This review of studies aimed to (1) link EFs for developmental outcomes in infants with or at risk for motor delays to ICF-CY categories and (2) synthesize the influences of EFs (with ICF-CY linkage) on developmental outcomes.

Method: A systematic literature search was performed of multiple databases. After applying selection criteria, environmental variables in 28 articles were linked to ICF-CY categories and underwent qualitative synthesis.

Results: Results indicated that physical environmental variables could be linked successfully to ICF-CY EFs categories, but not social environmental variables. Multiple environmental variables were associated with motor and other developmental outcomes.

Conclusion: Difficulties in linking social factors to ICF-CY categories indicate that additional EFs codes may need to be considered in the ICF-CY revision processes. The review provides empirical data on relationships between EFs and developmental outcomes in children with or at risk for motor delay.

Purpose: To explore and describe what physiotherapists experience they need to know about patients with non-specific low back pain (NSLBP) to make decisions about intervention.

Method: Four focus groups containing a total of 21 physiotherapists were carried out in Sweden. Interviews were transcribed and qualitative content analysis performed. The manifest content was coded and categorised, and a theme emerged. Extracted symptoms and signs were linked to ICF codes.

Result: Physiotherapists’ clinical reasoning represented a broad view on low back pain (LBP) including codes from all ICF components. The participants argued for individualisation of intervention to a specific patient’s problems. A theme of case complexity emerged, involving three levels: easy case, characterised by impairment in body function with close relation to specific body structures; complex case, characterised by impairments in body function, particular mental functions, activity limitations and participation restrictions, particular management of activity level and very complex case, characterised by impairments in body function, activity limitations and participation restrictions, and contextual factors, with help-seeking behaviour as a particular feature.

Conclusion: The physiotherapists’ clinical reasoning reflected a broad view on patients with NSLBP, with variations related to case complexity. The use of ICF codes contributed to understanding that the physiotherapists applied a broad perspective on NSLBP as a health condition as well as to knowledge about how physiotherapists’ understand patients with NSLBP.

Physiotherapists’ use of the ICF in clinical practice might facilitate identification and assessment of specific patient’s back pain problem as they occur in daily life and therefore be helpful in rehabilitation planning. Findings might also have an educational value.

Purpose: To investigate how physiotherapists talk about the choice of intervention for patients with NSLBP, particularly how professionals manage clinical encounters that may be experienced as challenging.

Method: Discourse analysis was performed of four focus groups’ talk. Twenty-one experienced physiotherapists working in primary health care in southern Sweden participated.

Results: Four focal themes appeared: Responsibility for health and health-related problems; Normalization – what counts as a normal back pain problem in relation to living an ordinary life; Change process – how to lead one’s life; and Individualization of the intervention in relation to the individual patient but also from the physiotherapists’ point of view. The themes shape an over-arching pattern of Problem-solving – which concerned both the professional task and the back pain problem, and was related to varying case complexity. This may have implications for the intervention the individual patient will be offered and on outcome.

Conclusions: Physiotherapists’ attitudes and approaches seem to entail components of professional and personal values which may influence patients’ access to health care, with a risk for unequal assessment and intervention as a consequence. We argue that enhanced physiotherapist-patient collaboration, including patient-led problem-investigation, is a prerequisite for improved outcome in terms of patient satisfaction, and for physiotherapy development. Future investigations of patients’ roles in specific face-to-face encounters are needed.

Purpose: To appraise and synthesize evidence from previous systematic reviews (SRs) concerning the impacts of goal setting on engagement in the rehabilitation process and on outcomes of participation and occupational performance for individuals with acquired brain injury (ABI).

Materials and methods: Systematic review of SRs following the preferred reporting items for SRs and meta-analysis guidelines. Sixteen full text articles were assessed for eligibility, from which four were included in the review. The Critical Appraisal Skills Programme checklists for SRs was used to rate quality and risk of bias.

Results: Four SRs of moderate to high quality included a variety of methodologies. Evidence of moderate quality showed clients’ active participation in goal setting had positive impacts on the client and their engagement in the process. Findings suggested that goal-directed interventions, particularly in outpatient rehabilitation, may improve occupational performance. There was some indication that goal setting may support adherence to therapeutic exercises, but relevance to rehabilitation outcomes was less clear. Findings related to participation outcomes were minimal.

Conclusions: Goal setting is a complex and multidimensional process. Goal setting may contribute to improved engagement in rehabilitation although few studies explored occupational performance and participation outcomes for individuals with ABI.

Implications for rehabilitation

• Active goal setting may contribute to improved engagement in rehabilitation, however, including individual clients in the goal setting process requires creativity and flexibility on behalf of professionals.
• A model is presented to promote understanding of the personal and environmental barriers and facilitators that may interact with goal setting approaches to promote engagement in rehabilitation.
• There is a need for more research exploring impact of active client-centered goal setting on occupational performance and participation outcomes for people with acquired brain injury.

Purpose As the group of technology-dependent children with long-term tracheostomy continues to expand, we aimed to explore parents' lived experience of everyday life with a child dependent on long-term tracheostomy. Materials and methods Six parents of four children were interviewed and the transcripts analyzed using Giorgi's descriptive phenomenology. Results All aspects of everyday life, parent-child interaction, and interaction with the surrounding outside world were affected by technology dependency. Parents played an active role by acting both as a protective shield between the outside world and the child and as an enabling bridge to help the child interact with the outside world. The active and involved role of parents is interwoven in all aspects, levels, and directions of interaction and everyday life. The lived experiences can be described in four themes: caution and risk awareness due to technology, meeting the demands of technology dependence, strained and constrained by technology dependence, and conflicted feelings about technology dependence. Conclusions Long-term tracheostomy and technology-dependency affect and shape everyday life. Practical implications from the study suggest that re-design and co-design between all stakeholders involved are needed to support parental well-being, coping and enhance patient safety for this growing population and their parents.

MHADIE project (Measuring Health and Disability in Europe: Supporting policy development) aimed at developing realistic, evidence-based and effective national policies for persons with disabilities. A preliminary step towards this goal was the demonstration on the feasibility of employing the ICF in clinical, educational and statistical fields, which corresponds to the recognised need to enhance the European Union's capacity of analysis of disability, as highlighted in its Disability Action Plan 2006–2007. The ultimate outcome of the project is the production of 13 policy recommendations, dealing with statistics clinical and educational areas, and four general policy recommendations focusing on: (a) the need of coordinating and integrating disability conceptualisation at all policy levels and across sectors; (b) the need of conducing longitudinal cohort studies which include children aged 0–6; (c) the need of reviewing transportation policies in light of the requirements of persons with disabilities; (d) the need of reviewing all disability policies to emphasise and support the role of the family, which is a consistent and substantial environmental facilitator in the lives of persons with disabilities.

In Sierra Leone, West Africa, there are many people with disabilities in need of rehabilitation services after a long civil war. Purpose: The aim of this qualitative study was to explore the experiences of prosthetic and orthotic service delivery in Sierra Leone from the local staff’s perspective. Method: Fifteen prosthetic and orthotic technicians working at all the rehabilitation centres providing prosthetic and orthotic services in Sierra Leone were interviewed. The interviews were transcribed and subjected to latent content analysis. Results: One main theme emerged: sense of inability to deliver high-quality prosthetic and orthotic services. This main theme was generated from eight sub-themes: Desire for professional development; appraisals of work satisfaction and norms; patients neglected by family; limited access to the prosthetic and orthotic services available; problems with materials and machines; low public awareness concerning disabilities; marginalisation in society and low priority on the part of government. Conclusions: The findings illustrated traditional beliefs about the causes of disability and that the public’s attitude needs to change to include and value people with disabilities. Support from international organisations was considered necessary as well as educating more prosthetic and orthotic staff to a higher level.

Purpose: This study compared the in-the-moment experiences among mothers of children with Autism Spectrum Disorders (ASD) by their household status (i.e., single versus coupled) and region of residence (i.e., regional versus major city area).

Methods: An experience sampling method was employed to collect data, and a total of 40 mothers used an iOS device to record activity types and in-the-moment experiences for one week during school term. Mann?Whitney U test and multilevel analysis were conducted to compare the experiences of these mothers.

Results: The analyses found the following results: 1) mothers spent most time in childcare and least time in self-care activities; 2) coupled mothers were more likely to feel supported; 3) coupled mothers were less likely to feel supported in domestic tasks; 4) mothers from major city were more likely to feel challenged in self-care activities; and 5) mothers from major city were more likely to feel supported in productivity tasks.

Conclusion: Limited but significant differences between single and coupled mothers, as well as mothers from regional and major city areas, were found. Future research direction and service provisions were suggested.

Implications for rehabilitation

• This study shows that all mothers spent the most time on childcare and the least amount of time on self-care activities.
• In-the-moment experiences between single and coupled mothers, as well as mothers from major cities and mothers from regional areas, differ somewhat; however, this study builds evidence to support that these mothers? experiences are similar.
• The result of the study indicates that single mothers require extra support as they carry similar levels of responsibilities as coupled mothers, but without the support of a partner.
• Promoting a sense of control may assist all mothers to fully engage in parenting activities.

PURPOSE: To describe and analyse dental care and treatment modalities for children with complex disabilities from a biopsychosocial perspective, with special focus on dental treatment under general anaesthesia (GA) and its relationship to child's functioning.

METHOD: An ICF-CY Checklist for Oral Health was completed using structured interview, direct observations, and dental records for patients attending a specialist paediatric dentistry clinic. Descriptive and comparative data analysis was performed. Performance qualifiers from the ICF-CY component Activities and participation were used to calculate functional factors.

RESULTS: Median referral age was 1.5 years and the majority were referred by their paediatrician. Almost all visited a dental hygienist regularly. Dental treatment under GA was common and was combined in 78% of sessions with medical treatment. Children with limitations in their interpersonal interactions and relationships were most likely to have dental GA.

CONCLUSION: Children without caries experience had been referred for specialist dental care at an earlier age than children with caries experience. GA was a common treatment modality and dental and medical treatments were coordinated under the same GA for a majority of children. By using the ICF-CY, it was possible to identify functional limitations characterising children with disabilities that require dental treatment under GA. Implications for Rehabilitation Early referral to a specialist in paediatric dentistry is valuable for oral disease prevention in children with disabilities. Availability of dental treatment under general anaesthesia (GA) is also important. Combining dental and medical interventions during the same GA session optimises resources both for the individual and for the health organisation. Children with limitations in interpersonal interactions and relationships are more likely to need dental treatment under GA than other children.

Purpose: To describe 0–16-year-old children with disabilities receiving paediatric specialist dental care from a biopsychosocial perspective, with focus on relationship between oral health, medical diagnosis, and functioning. Method: A questionnaire with an International Classification of Functioning, Disability and Health – Children and Youth version (ICF-CY) Checklist for Oral Health was completed using structured interview, direct observation, and information from dental records. Descriptive data analysis was performed together with principle component analysis to calculate factors of functioning used in cluster analysis in order to present functioning profiles. Results: Ninety-nine children with at least one major medical diagnosis were included. Twenty had previous caries experience. Two factors of functioning were calculated, labelled “Physical ability” and “Intellectual ability, communication, and behaviour”. Based on functioning profiles three clusters were determined. There were no statistically significant differences in caries experience between medical diagnoses or clusters. Conclusion: It was possible to identify profiles of functioning in children with disabilities receiving specialist dental care. Despite complex disabilities, the children had good oral health. Neither medical diagnosis nor functioning was found to have a clear relationship with oral health. To understand the environmental context leading to high-quality oral health, further studies of dental management in relation to medical and oral diagnoses and child functioning are needed.

Implications for Rehabilitation

• Child Oral Health

• The use of ICF-CY makes it possible for paediatric dentists to assess children’s functioning, disability, and health from a biopsychosocial perspective, showing that the medical diagnosis alone is not enough to assess functions relevant for oral health in the individual.

• In order to adequately organize, plan, and improve dental care for this heterogenic group of young patients with disabilities a biopsychosocial approach is valuable, aiding a holistic perspective on oral health.

• Despite complex medical and functional disabilities that may challenge oral health and dental care, this study finds oral health to be good in a group of children with disabilities attending a specialist dental clinic.

PURPOSE: The present study investigates progressive muscular dystrophy over a five year period. The purpose is twofold: to describe changes over time and to investigate relations between disability, coping and quality of life. METHOD: The study group comprised 45 adults (16 men and 29 women), with an average age of 44 years. All were assessed in 1991 and 1996, with the following instruments: the ADL staircase, the Self-report ADL, the Mental Adjustment to Cancer scale, the Sickness Impact Profile and the Psychosocial well-being questionnaire (Kaasa). RESULTS: Increasing disability was accompanied by an increase in dependence on others and a significant deterioration of health-related quality of life and with regard to 'Satisfaction'. The predominant type of coping was 'Fighting spirit', whilst 'Fatalism' showed the greatest decline over time. 'Ambulation' and the ADL staircase correlated with 'Physical index' on the SIP. Correlations between disability, coping and quality of life were moderate. The results can serve as a basis for planning and evaluation of recurring rehabilitation for persons with MD.

PURPOSE: The purpose of the present study is to describe the illness experience of persons with muscular dystrophy, their experience of activities of daily living, and whether there are any differences in how different types of muscular dystrophy affect people's lives. METHOD: Fifty-eight subjects were interviewed on two occasions. The interviews with 15 subjects (five for each type of muscular dystrophy; proximal muscular dystrophy, myotonic muscular dystrophy, myopathia distalis tarda hereditaria) were subjected to inductive content analysis. The interviews were about experiences of the first symptoms, learning of the diagnosis, life in general from then to the present, managing daily living and thoughts about the future. RESULTS: After a deductive validation procedure the results were presented as three core narratives', one for each type of muscular dystrophy. The illness experience was mainly similar irrespective of type of muscular dystrophy. Learning of the incurable, progressive, hereditary disease was traumatic and the subjects hoped the diagnosis was wrong. They felt uncertain about the future, and were sad and worried about the consequences of a hereditary disease for their children. CONCLUSION: The results will enable rehabilitation staff to better understand the patient's need for psychosocial support.

Background: The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Burn Injury Model Systems (BMS) is a nationwide database that uses patient-reported outcome measures to collect data. Though the outcome measures demonstrate good psychometric properties, the question remains whether or not these measures collect data that encompass the entire experience of burn patients over time.

Methods: Each meaningful concept included in the BMS assessments was linked to the International Classification of Functioning, Disability and Health (ICF) in order to classify and describe the content of each measure. The linking was completed by two experienced coders. The perspective of each assessment was also determined.

Results: The body function component was most frequently addressed overall followed by the activities and participation component. The component body structures and environmental factors are not extensively covered in the BMS assessments. ICF chapter and category distribution varied greatly between assessments. The assessments were of the health status perspective.

Conclusion: This study suggests a need to revisit the item composition of the BMS assessments to more evenly distribute ICF topics and subtopics that are pertinent to burn injury which will ensure a broader but more precise understanding of burn injury recovery.Implications for RehabilitationA better understanding of the data collected through the Burn Model Systems (BMS) project may contribute to improve data collection tools and ultimately lead to clinical practice innovations and improvements. Clinicians interested in using BMS data for research purposes can better understand what topics are included and excluded in the collection and what perspectives are addressed.This study highlights the need for burn clinicians around the world to lend their expertise to the WHO for the development of a much needed burn injury International Classification of Functioning, Disability and Health Core Set.

PURPOSE: To evaluate client satisfaction with prosthetic and orthotic services in Sweden, determine if satisfaction differs between clients using different devices and identify factors which influence client satisfaction.

MATERIALS AND METHODS: A cross-sectional design was used to survey 7318 clients. The survey included items related to demographics, quality of life, device comfort, device use, the extent to which clients' needs were met and satisfaction with services. Ethics approval was provided by the Swedish Ethical Review Authority.

RESULTS: A total of 2925 surveys were returned reflecting a response rate of 41%. Mean OPUS-CSS point score was 61.9(SD 16.8) with differences observed between device categories (p < 0.001). Factors that were identified as most positively influencing client satisfaction were, being a limb prosthesis user and being under 65 years. When analysing scores for individual OPUS items breast prosthesis users scored higher than users of other devices. Clients were most satisfied with the level of respect they were shown by staff (mean = 2.72/3) and less satisfied with coordination of services with other therapists/doctors(mean = 1.88/3).

CONCLUSIONS: Prosthetic and orthotic users are reasonably satisfied with the services they receive. Attention should be directed towards understanding why prosthetic users are more satisfied than orthotic users and why clients under 65 years report higher satisfaction scores.