The utility of the International Classification of Functioning construct as a statistical tool - operationalizing mental health as an indicator of adolescent 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 rehabilitationConsidering 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.

Success Factors Enabling Employment for Adults on the Autism Spectrum from Employers' Perspective.

Employment outcomes for individuals with autism spectrum disorder (ASD) are poor and there is limited understanding on how best to support individuals with ASD in the workplace. Stakeholders involved in the employment of adults with ASD, including employers and employment service providers have unique insights into the factors influencing employment for this population. Organisational and individual factors facilitating successful employment for adults with ASD across Australia and Sweden were explored, including the supports and strategies underpinning employment success from an employers' perspective. Three themes including Knowledge and Understanding of ASD, Work Environment and Job Match emerged, suggesting that a holistic approach was key to supporting success, with employer knowledge and understanding of ASD underpinning their ability to facilitate employment.

How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge.

BACKGROUND: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff's perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions. OBJECTIVES: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers). METHOD: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection. RESULTS: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered. CONCLUSION: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children's hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.

Linking youths' mental, psychosocial, and emotional functioning to ICF-CY: lessons learned.

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.

Pain management for children with cerebral palsy in school settings in two cultures: action and reaction approaches.

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. Implications for rehabilitation • When providing support, hands-on interventions should be supplemented by structured preventive programs and routines for parent collaboration (action-and-reaction approach). • When regulating support, Sweden and South Africa can learn from each other; ○ In Sweden, the implementation of a prevention program has been successful. ○ In South Africa, the possibilities giving support directly when pain in children is observed have been beneficial.

Methods for conceptualising 'visual ability' as a measurable construct in children with cerebral palsy.

BACKGROUND: Vision influences functioning and disability of children with cerebral palsy, so there is a growing need for psychometrically robust tools to advance assessment of children's vision abilities in clinical practice and research. Vision is a complex construct, and in the absence of clarity about this construct it is challenging to know whether valid, reliable measures exist. This study reports a method for conceptualising 'visual ability' as a measurable construct. METHODS: Using the items from 19 assessment tools previously identified in a systematic review, this study used a two-phase process: first, deductive content analysis linked items to the International Classification of Functioning, Disability and Health - Child and Youth version (ICF-CY), and second, vision-specific 'Activity'-level items were explored using inductive thematic analysis. RESULTS: The linking and content analysis identified that existing assessment tools are measuring vision across the ICF-CY domains of Body Functions, Activities and Participation, and Environmental and Personal Factors. Items specifically coded to vision at the Activity level were defined as measuring 'how vision is used', and these items form the basis of the conceptualisation that 'visual ability' is measurable as a single construct. The thematic analysis led to the identification of 3 categories containing 13 themes that reflect a child's observable visual behaviours. Seven abilities reflect how a child uses vision: responds or reacts, initiates, maintains or sustains looking, changes or shifts looking, searches, locates or finds, and follows. Four interactions reflect the contexts in which a child uses their vision to purposefully interact: watches and visually interacts with people and faces, objects, over distance, and with hands. Finally, two themes reflect a child's overall use of vision in daily activities: frequency of use, and efficiency of use. CONCLUSIONS: This study demonstrates an approach to exploring and explaining a complex topic utilising World Health Organization language and building on existing research. Despite the complexity of vision, the concept of 'how vision is used' can be clearly defined as a measurable construct at the Activity level of the ICF-CY. This study has identified observable visual behaviours that may be developed into items assessing how vision is used in daily activities.

Professionals' Perceptions about the Need for Pain Management Interventions for Children with Cerebral Palsy in South African School Settings.

Pain is common in children with cerebral palsy (CP) and may have negative consequences for children's success in their studies. Research has shown that pain in childhood negatively influences individuals' participation and quality of life in later years. This study investigated how professionals in South African school settings respond to children's need for pain management in an attempt to enable the children to be active participants in school activities, despite their pain. The study was descriptive and followed a qualitative design (i.e., focus group interviews with semistructured questions and a conventional content analysis). Five government schools for children with special education needs in South Africa's Gauteng province participated. Participants/Subjects: Thirty-eight professionals who represented eight professions. Professional statements on the topic were collected from five focus group sessions conducted during one week. Qualitative content analysis of the data was performed. Similar statements were combined, coded, and sorted into main categories and subcategories. The analysis identified three main categories for pain management: environmental, treatment, and support strategies. In addition, four groups of statements emerged on how contextual factors might affect pain in children with CP and their participation in school settings. It is important to train professionals in pain management and to implement structured models for pain prevention and management to ensure that best practices are adhered to for children with CP who suffer from acute or chronic pain.

The content of goals in individual educational programs for students with complex communication needs.

The aim of the study was to explore the contents of communication-related goals in individualized education programs (IEPs) for students with complex communication needs. Goals in 43 IEPs were linked to the International Classification of Functioning, Disability and Health, Children and Youth version (ICF-CY). The results show that the communication-related IEP goals contain information on multiple domains of functioning in the ICF-CY. However, judging by the amount of codes linked to ICF-CY chapters, the IEPs contain a relatively small proportion of goals that focus on interaction with others, or participation in classroom and leisure activities. Special education teachers and speech-language pathologists working with students with complex communication needs may need support to formulate communication-related IEP goals with a focus on interaction and participation in school activities.

Eina! Ouch! Eish! Professionals' Perceptions of How Children with Cerebral Palsy Communicate About Pain in South African School Settings: Implications for the use of AAC.

Most children with severe cerebral palsy experience daily pain that affects their school performance. School professionals need to assess pain in these children, who may also have communication difficulties, in order to pay attention to the pain and support the children's continued participation in school. In this study, South African school professionals' perceptions of how they observed pain in children with cerebral palsy, how they questioned them about it and how the children communicated their pain back to them were investigated. Thirty-eight school professionals participated in five focus groups. Their statements were categorized using qualitative content analysis. From the results it became clear that professionals observed children's pain communication through their bodily expressions, behavioral changes, and verbal and non-verbal messages. Augmentative and alternative communication (AAC) methods were rarely used. The necessity of considering pain-related vocabulary in a multilingual South African context, and of advocating for the use of AAC strategies to enable children with cerebral palsy to communicate their pain was highlighted in this study.

Applying the ICF to identify requirements for students with Asperger syndrome in higher education.

UNLABELLED: Higher education requires more than academic skills and everyday student-life can be stressful. Students with Asperger syndrome (AS) may need support to manage their education due to difficulties in social functioning. OBJECTIVE: As preparation for the development of a structured tool to guide student and coordinator dialogues at Swedish universities, this study aimed to identify ICF categories that reflect requirements in everyday student-life for students with AS. METHODS: Using descriptive qualitative approach, information in documents reflecting the perspectives of university students, international classifications, user/health organisations and education authorities were linked to ICF codes. RESULTS: In total, 114 ICF categories were identified, most of which related to learning, tasks and demands, communication and interactions. CONCLUSION: Students with AS need varying accommodations to be successful in higher education. In the future, ICF-based code sets, including demands on student roles, can be used as checklists to describe functioning and needs for support.

Students with disabilities in higher education - perceptions of support needs and received support: a pilot study.

Students with disabilities in higher education frequently need support to succeed in their studies. Perceived problems in managing studies and everyday life may be the same for students with different disabilities, although the reasons for support may vary between them. In this pilot study, a questionnaire aimed to survey everyday functioning in students with disabilities was tested. Thirty-four students with Asperger syndrome, motor disabilities or deafness/hearing impairments were asked 55 close-ended and open-ended questions on participation restrictions and available support programmes. One aim of this study was to test the usefulness of the questionnaire, and another aim was to identify students' perceptions of their everyday student life and the support they are offered, with a special focus on comparing perceptions of needs and support between students with Asperger syndrome and other student groups. The results indicate the need to plan recruitment of participants carefully and that the questionnaire was useful. The descriptive analyses indicated that the groups primarily reported the same difficulties; however, the open-ended comments indicated that the reasons for the problems vary between the groups. It indicates that Likert-type responses to questions concerning perceived difficulties need to be supplemented by open-ended questions on the perceived reasons to problems.

Professionals' views of children's everyday life situations and the relation to participation.

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.

Differentiating activity and participation of children and youth with disability in Sweden: a third qualifier in the International Classification of Functioning, Disability, and Health for Children and Youth?

OBJECTIVE: This article discusses the use of a third qualifier, subjective experience of involvement, as a supplement to the qualifiers of capacity and performance, to anchor activity and participation as separate endpoints on a continuum of actions. DESIGN: Empirical data from correlational studies were used for secondary analyses. The analyses were focused on the conceptual roots of the participation construct as indicated by the focus of policy documents, the support for a third qualifier as indicated by correlational data, differences between self-ratings and ratings by others in measuring subjective experience of involvement, and the empirical support for a split between activity and participation in different domains of the activity and participation component. RESULTS: Participation seems to have two conceptual roots, one sociologic and one psychologic. The correlational pattern between the qualifiers of capacity, performance, and subjective experience of involvement indicates a possible split between activity and participation. Self-ratings of participation provide information not obtained through ratings by others, and later domains in the activities and participation component fit better with measures of experienced involvement than earlier domains did. CONCLUSIONS: The results from secondary analyses provide preliminary support for the use of a third qualifier measuring subjective experience of involvement to facilitate the split between activity and participation in the International Classification of Functioning, Disability and Health, Children and Youth version, activity and participation domain.

Using content analysis to link texts on assessment and intervention to the International Classification of Functioning, Disability and Health - version for Children and Youth (ICF-CY).

OBJECTIVE: To explore how content analysis can be used together with linking rules to link texts on assessment and intervention to the International Classification of Functioning, Disability and Health - version for children and youth (ICF-CY). METHODS: Individual habilitation plans containing texts on assessment and intervention for children with disabilities and their families were linked to the ICF-CY using content ana-lysis. Texts were first divided into meaning units in order to extract meaningful concepts. Meaningful concepts that were difficult to link to ICF-CY codes were grouped, and coding schemes with critical attributes were developed. Meaningful concepts that could not be linked to the ICF-CY were assigned to the categories "not-definable" and "not-covered", using coding schemes with mutually exclusive categories. RESULTS: The size of the meaning units selected resulted in different numbers and contents of meaningful concepts. Coding schemes with critical attributes of ICF-CY codes facilitated the linking of meaningful concepts to the most appropriate ICF-CY codes. Coding schemes with mutually exclusive categories facilitated the classification of meaningful concepts that could or could not be linked to the ICF-CY. CONCLUSION: Content analysis techniques can be applied together with linking rules in order to link texts on assessment and intervention to the ICF-CY.

Identifying child functioning from an ICF-CY perspective: everyday life situations explored in measures of participation.

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 International Classification of Functioning, Disability and Health and the version for children and youth as a tool in child habilitation/early childhood intervention--feasibility and usefulness as a common language and frame of reference for practice.

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.

Exploring changes over time in habilitation professionals' perceptions and applications of the International Classification of Functioning, Disability and Health, version for Children and Youth (ICF-CY).

OBJECTIVE: This study explored how professionals in inter-disciplinary teams perceived the implementation of the World Health Organization's International Classification of Functioning, Disability and Health, version for Children and Youth (ICF-CY) in Swedish habilitation services. DESIGN: Descriptive longitudinal mixed-methods design. METHODS: Following participation in a 2-day in-service training on the ICF-CY, 113 professionals from 14 interdisciplinary teams described their perceptions of the implementation of the ICF-CY at 3 consecutive time-points: during in-service training, after 1 year, and after 2.5 years. RESULTS: Implementation of the ICF-CY in daily work focused on assessment and habilitation planning and required adaptations of routines and materials. The ICF-CY was perceived as useful in supporting analyses and in communication about children's needs. Professionals also perceived it as contributing to new perspectives on problems and a sharpened focus on participation. CONCLUSION: Professionals indicated that the ICF-CY enhanced their awareness of families' views of child participation, which corresponded to organizational goals for habilitation services. An implementation finding was a lack of tools fitting the comprehensive ICF-CY perspective. The study points to the need for ICF-CY-based assessment and intervention methods focusing on child participation.

Evaluation of in-service training in using the ICF and ICF version for children and youth.

OBJECTIVE: To study the effects of in-service training on staff's self-reported knowledge, understanding use of the International Classification of Functioning, Disability and Health (ICF) and ICF Children and Youth version (ICF-CY). DESIGN: Quasi-experimental with a questionnaire prior to training and another one year after training. METHODS: Intervention was in-service training in using the ICF and ICF-CY. Subjects were 113 professionals working in habilitation services. Two subgroups were compared: (i) subjects who reported one year after the training that they had used the ICF and ICF-CY in daily practice; and (ii) subjects who had not used these frameworks. RESULTS: The gender, age, and years of work experience of the members in the subgroups were similar. The professionals who used what they learnt from the training, and who already had knowledge about and a positive attitude to the ICF/ICF-CY prior to the training, were found to benefit most from the training. They also increased their ability to apply it to statements about everyday work. These professionals should focus on increasing their understanding and use of the ICF/ICF-CY in their everyday work and in assessment, while those who have limited prior knowledge of the ICF/ICF-CY should focus on gaining knowledge and understanding the purpose, terms and components of the framework. CONCLUSION: It is recommended that in-service training in using the ICF and ICF-CY is tailored to different groups of professionals depending on their degree of knowledge of the ICF/ICF-CY.