Lilly Augustine

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.

Does thinking and doing the same thing amount to involved participation? Empirical explorations for finding a measure of intensity for a third ICF-CY qualifier

Background: Participation as involvement in a situation includes two dimensions; doing the activity and the experience of involvement. Objectives: The ICF-CY only measures doing using the capacity and performance qualifiers, a dimension measuring the experience is needed; a third qualifier. Hypothesis: The experienced involvement of pupils in school activities is higher when thinking and doing coincided. Methods: By comparing self-reported experiences of involvement of children, data about what children were thinking and doing during activities were gathered from 21 children with and 19 without disabilities in inclusive classrooms. Results: A relationship exists between an index of the subjective experience of involvement and whether children were thinking and doing the same things. Conclusion: This index can be constructed using measures of concentration, control, involvement, and motivation. Choice is influential, as knowledge about why an activity is undertaken affects involvement. Additionally, increased subjective experience of involvement gives better psychological health and well-being.

Trends in health complaints from 2002 to 2010 in 34 countries and their association with health behaviours and social context factors at individual and macro-level

BACKGROUND This article describes trends and stability over time in health complaints in adolescents from 2002 to 2010 and investigates associations between health complaints, behavioural and social contextual factors at individual level and economic factors at macro-level. METHODS Comprising N = 510 876 11-, 13- and 15-year-old children and adolescents in Europe, North America and Israel, data came from three survey cycles of the international Health Behaviour in School-aged Children (HBSC) study. Age- and gender-adjusted trends in health complaints were examined in each country by means of linear regression. By using the country as the random effects variable, we tested to what extent individual and contextual variables were associated with health complaints. RESULTS Significant associations are stronger for individual level determinants (e.g. being bullied, smoking) than for determinants at macro-level (e.g. GDP, Gini), as can be seen by the small effect sizes (less than 5% for different trends). Health complaints are fairly stable over time in most countries, and no clear international trend in health complaints can be observed between 2002 and 2010. The most prominent stable determinants were being female, being bullied, school pressure and smoking. CONCLUSION Factors associated with health complaints are more related to the proximal environment than to distal macro-level factors. This points towards intensifying targeted interventions, (e.g. for bullying) and also targeting specific risk groups. The comparably small effect size at country-level indicates that country-level factors have an impact on health and should not be ignored.

Trends in multiple recurrent health complaints in 15-year-olds in 35 countries in Europe, North America and Israel from 1994 to 2010

BACKGROUND Health complaints are a good indicator of an individuals psychosocial health and well-being. Studies have shown that children and adolescents report health complaints which can cause significant individual burden. METHODS Using data from the international Health Behaviour in School-aged Children study, this article describes trends in multiple recurrent health complaints (MHC) in 35 countries among N = 237 136 fifteen-year-olds from 1994 to 2010. MHC was defined as the presence of two or more health complaints at least once a week. Logistic regression analysis was performed to evaluate trends across the five survey cycles for each country. RESULTS Lowest prevalence throughout the period 1994-2010 was 16.9% in 1998 in Austria and highest in 2006 in Israel (54.7%). Overall, six different trend patterns could be identified: No linear or quadratic trend (9 countries), linear decrease (7 countries), linear increase (5 countries), U-shape (4 countries), inverted U-shape (6 countries) and unstable (4 countries). CONCLUSION Trend analyses are valuable in providing hints about developments in populations as well as for benchmarking and evaluation purposes. The high variation in health complaints between the countries requires further investigation, but may also reflect the subjective nature of health complaints.

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.

Relationships between physical education (PE) teaching and student self-efficacy, aptitude to participate in PE and functional skills : with a special focus on students with disabilities

ABSTRACT Background: Students with disability show an increasing incidence of school failure. Quality teaching and appropriate support may foster high self-efficacy, a predictive factor for successful school outcomes. Physical Education (PE) can provide students with a context in which self-efficacy and participation are promoted leading to improved academic achievement. The transition into secondary school can be challenging for many students with increased educational demands, developmental changes and individual social identification coinciding. A disability may add to the challenge of success. Methods: Three groups of students, aged 13 years and enrolled in Swedish mainstream schools were targeted (n = 439). Groups included students with 1. A diagnosed disability, 2. Low grades in PE (D–F) and 3. High grades (A–C) in PE. Questionnaires were collected and analyzed from 30/439 students with a diagnosed disability (physical, neuro-developmental and intellectual) from 26 classes, their classmates and their PE-teachers (n = 25). Relationships between student self-reports and PE-teachers’ self-ratings were investigated. Also examined was the potential to which students’ functional skills could predict elevated general school self-efficacy, PE specific self-efficacy and aptitude to participate in PE. Results were compared with the total sample and between the three target groups (n = 121). Results: For students with disabilities, better self-rated teaching skills were related to lower student perceived general school self-efficacy, PE specific self-efficacy and aptitude to participate in PE. The impact of classroom climate in PE was more obvious among students with disabilities. Perceived functional skills were associated with elevated general school self-efficacy, PE specific self-efficacy and aptitude to participate in PE. Better socio-cognitive functional skills had an overall positive effect on all outcomes. Students with disabilities reported results similar to the total sample, the D–F group scored lower and the A–C group higher than the total sample and the disability group. Elevated self-efficacy in PE is six times less probable in students with disabilities, compared to the A–C group. Conclusions: Our findings that better teacher planning and grading skills, are detrimental to students disadvantaged by disability is contradictive. Improving the establishment and communication of adapted learning standards at the transition to secondary school is a crucial and a predictive factor for promoting positive school experiences for students with disability. Students with disabilities need to be assured that the intended learning outcomes can be reached by doing activities differently than their typically functioning peers. Consideration of class composition is suggested as a means of promoting a positive learning climate, which would particularly benefit students with disabilities. Allocation of resources to support student socio-cognitive skills would improve experiences for the D–F group and likely promote a positive learning environment.

Measuring self-efficacy, aptitude to participate and functioning in students with and without impairments

Abstract Including vulnerable groups of students such as students with learning disabilities in mainstream school research, require ethical considerations and questionnaire adaptation. These students are often excluded, due to low understanding or methodologies generating inadequate data. Students with disability need be studied as a separate group and provided accessible questionnaires. This pilot study aims at developing and evaluating student self-reported measures, rating aspects of student experiences of school-based Physical Education (PE). Instrument design, reliability and validity were examined in Swedish secondary school students (n = 47) including students, aged 13, with intellectual disability (n = 5) and without impairment and test–retested on 28 of these students. Psychometric results from the small pilot-study sample were confirmed in analyses based on replies from the first wave of data collection in the main study (n = 450). Results show adequate internal consistency, factor structure and relations between measures. In conclusion, reliability and validity were satisfactory in scales to measure self-efficacy in general, in PE, and aptitude to participate. Adapting proxy ratings for functioning into self-reports indicated problems. Adequacy of adjustments made were confirmed and a dichotomous scale for typical/atypical function is suggested for further analyses.

Perceived needs among parents of children with a mild intellectual disability in Sweden

Parents of children with a mild intellectual disability experience more distress and require more support than other parents. The aim was to investigate the perceived family needs of parents of children with an MID and to investigate the relationship between parents’ perceived self-efficacy in their parental role and in collaborating with professionals as well as with their perceived needs for support. Interviews were based on questionnaires to the parents of 38 children. The results revealed that parents perceived need for information, respite, and venues in which to meet other parents in similar situations. The informational needs were related to parental self-efficacy and obtaining support. A lower need for information was related to higher perceived control over services. In conclusion, it appears that professionals need to work to strengthen parents’ ability to ask for support and to express the needs. Well-informed parents will develop stronger parental self-efficacy and perceived control over services.

Factors associated with participation and change over time in domestic life, peer relations and school for adolescents with and without self-reported neurodevelopmental disorders : a follow-up prospective study

Even though participation in everyday events is a vital part in the fulfilment of human rights, adolescents with neurodevelopmental disorders often face participation restrictions in every-day acti ...

Inclusion through participation : understanding participation in the international classification of functioning, disability, and health as a methodological research tool for investigating inclusion

This paper investigates the use and validity of the International Classification of Functioning disability and health (ICF) as a common language for describing inclusive educational settings. There ...