Margareta Adolfsson

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.

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?

ObjectiveThis 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. DesignEmpirical 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. ResultsParticipation 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. ConclusionsThe 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.

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 childrens 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.

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 staffs 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.

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. Implications for Rehabilitation A child’s functioning and disability is best understood when diagnosis is supplemented by a functional description. Children and parents need opportunities expressing their opinions during intervention planning. Models to connect interventions to participation in everyday life situations enhance children’s motivation.

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

ABSTRACT 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

Abstract 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.

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

Abstract 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.

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

Abstract 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.

Everyday Life Situations of School-Aged Children with Severe Disabilities: What are the Goals for the Future? An Exploratory Study

This study investigated present and future everyday life situations (ELS) in home, school, work, and leisure environments for a group of school-aged children with severe disabilities, including complex disorders and a combination of disabilities. The purpose was to explore universal ELS; clarify how the children can be supported in their development of autonomy; and to gather information on potential overall goals for interventions. To make data comparable, all reported ELS were linked to the International Classification of Functioning, Disability and Health, Child and Youth version (ICF-CY) and listed along with information on the setting. Both today, and in the future, recreational activities and participation in school or work were of highest importance, but few reported ELS involved directly interacting with other children. More ELS were predicted to occur outside the home and with a higher degree of autonomy. Therefore, interventions would be focused on the overall goal that children with severe disabilities take initiatives to become independent and to form relationships with others.