Perceived participation. A comparison of students with disabilities and students without disabilities

According to a recent study (Almqvist & Granlund, accepted), participation is not strongly related to type and degree of disability but probably to the context of the individual as well as generic personal factors. Such diverse factors can over time become orchestrated and pull the development of individuals with disability in a certain direction. This study compares how 959 students with and without disabilities in two age-groups 7–12 and 13–17 perceive their participation in school activities. The main method of analysis is one-way-ANOVA. The result indicates that students without disabilities rated their perceived participation higher, especially in unstructured “free”; activities. Further, students without disabilities experience a higher degree of autonomy and rate the availability of school activities as higher. Students with disabilities rate their interaction with teachers as better and more frequent, but their interaction with peers as less frequent. These differences increase with age and may reinforce a stigmatization process

Examining the rights of children with intellectual disability in South Africa : children’s perspectives

BACKGROUND. Human rights provide fundamental conditions for people to maintain dignity and selfdetermination and protect a nation’s most vulnerable citizens. In South Africa, children with intellectual disability who experience socioeconomic disadvantage may be particularly vulnerable due to their cognitive impairments and inability to garner needed resources. METHOD. The perceptions of children with intellectual disability regarding their access to basic amenities in their home environments were examined to determine whether their positive human rights were met. Risk factors were examined in relation to these perceptions. RESULTS. The results suggested that participants generally reported high degrees of access to basic resources. Logistic regressions suggested socioeconomic risk factors (e.g., income, education, household size, relationship status) were negatively related to children’s reports of access to food and their own beds and positively related to having someone available to explain confusing concepts to them. CONCLUSIONS. The positive human rights of children living in high risk environments should be monitored to ensure all South Africans have their rights met.http://www.tandfonline.com/loi/cjid20hb201

Play in retrospection

The aim of this study is to analyze and describe how adults with visual disability, motor disability and Asperger syndrome retrospectively identify and experience play in their childhood. Fifteen adults, aged 25 to 76 years, were interviewed about their play experiences. A qualitative approach was adopted with the aim to describe qualitatively different experiences of play. The findings indicate that play experiences merge like mirror images with participation and exclusion as two divergent sides of play. The data suggest that niches for play experiences include three components related to participation and exclusion: a personal component, a social component and an environmental component. Type of disability is one of many aspects making up the three components without being a central feature within any of the components. Type of disability affects personal characteristics and preferences, form of social interaction and the environmental requirements for participating in play but not the experience of play per se. Unique to this study is the importance assigned to the concept of niche. Perceived niches are based on memories and also influence the construction of memories. Thus, they function as a link between perceptions of experiences of play from childhood to adulthood

Beyond diagnosis: the relevance of social interactions for participation in inclusive preschool settings

Purpose: This study aims to explore the role of three specific factors within the child-environment interaction process - engagement, independence and social interactions - in influencing development and learning of children with disabilities in inclusive preschool settings. The main question is whether children can be categorised in homogenous groups based on engagement, independence and social interactions (proximal variables within a biopsychosocial framework of human development). The study also examined whether children with the same diagnosis would group together or separately, when trying to identify clusters of engagement, independence and social interactions, and additionally whether such clusters vary as a function of individual child characteristics, and/or as a function of structural and process characteristics of preschool environment. Methods: Data was taken from an intervention study conducted in mainstream preschools in Portugal. A person-centered cluster analysis was conducted to explore group membership of children with various diagnoses, based on their engagement, independence and social interaction profiles. Results: Results show that children clustered based on similarity of engagement, independence and social interaction patterns, rather than on diagnosis. Besides, it was found that quality of peer interaction was the only predictor of cluster membership. Conclusion: These findings support the argument that participation profiles may be more informative for intervention purposes than diagnostic categories, and that preschool process quality, namely peer interaction, is crucial for children's participation.info:eu-repo/semantics/publishedVersio

Human rights of children with intellectual disabilities : comparing self-ratings and proxy ratings

BACKGROUND : A child rights-based approach to research articulates well with Article 12 of the United Nations Convention on the Rights of the Child (CRC) and highlights the importance and value of including children’s own views about aspects that concern them. The aim of this study is to compare children with intellectual disability’s own ratings (as self-raters) to those of their primary caregivers (as proxy raters) regarding human rights of children. The study also aims to establish whether there is an inter-rater agreement between the self-raters and proxy raters concerning Maslow’s hierarchy of needs. METHOD : This study is nested in a larger study examining the human rights of children with intellectual disability in South Africa. In total, 162 children with intellectual disability from 11 schools across three provinces and their primary caregivers participated by answering parts of a Children’s Rights Questionnaire (CRQ) developed by the researchers based on the United Nation’s CRC.We compared the answers for six questions in the questionnaire that were addressed to self-raters (children) and proxy raters (primary caregivers) in the same way. RESULTS : Questions regarding basic needs, such as access to clean water or whether the child had food to eat at home, were answered similarly by self-raters and proxy raters. Larger differences were found when self-raters and proxy raters were asked about whether the child had things or friends to play with at home. Socio-economic variables seemed to affect whether self-raters and proxy raters answered similarly. CONCLUSION : The results underscore the importance of promoting children’s rights to express themselves by considering the opinions of both the children as self-raters and their primary caregivers as proxy raters – not only the latter. The results indicate that it is especially important to include children’s own voices when more complex needs are surveyed. Agreement between selfand proxy ratings could be affected by socio-economic circumstances.http://onlinelibrary.wiley.com/journal/10.1111/(ISSN)1365-22142016-11-30hb201

Agreement between children with long-term health conditions and their primary caregivers on reports of perceived participation

BackgroundThere is limited knowledge regarding the perceived participation of children with long-term health conditions in everyday activities. Children may have perceptions that differ from those of their primary caregivers. It is unclear whether children and caregivers rate their participation in everyday situations in the same way.ObjectivesWe aimed to explore the level of agreement pertaining to perceived participation (attendance and involvement) and examine whether differences exist in the rank order of activities selected as the three most important between reports from children with long-term health conditions and their primary caregivers.MethodsThe simplified Chinese version of the Picture My Participation (PMP-C; Simplified) was used in an interview with children with long-term health conditions; meanwhile, their primary caregivers finished the questionnaire independently. Data were analyzed using Wilcoxon tests, weighted kappa values, and Spearman's rank order correlation.ResultsChildren with long-term health conditions reported significantly lower attendance scores for six activity items (p < 0.05) and higher involvement scores for two activity items (p < 0.05) than their primary caregivers did. An overall slight to fair agreement in perceived participation was found at the child–caregiver dyad level, though differences in dyads were observed. A strong correlation was identified between the rank order of the most important activities for both groups (r = 0.81).ConclusionsDifferences may exist between the perceived participation of children with long-term health conditions, as reported by primary caregivers and the children themselves. The findings highlight that children with long-term health conditions exhibit unique views with respect to their perceived participation and have to be asked regarding their perceptions themselves

Agreement between participation ratings of children with intellectual disabilities and their primary caregivers

BACKGROUND : Participation of children with ID it is argued must be understood in relation to the fit with the environment. Since caregivers are a vital factor within the close environment of a child with intellectual disability, their perceptions are unequivocally important. AIMS : The main aim of this study is to describe the self-reported participation of children with ID and the perceptions of their primary caregivers. Both frequency of attendance and perceived importance of activity was measured with self-reported and proxy-reports. METHODS AND & PROCEDURES : A custom developed Picture my Participation (PmP) survey was utilised in an interview format with children with intellectual disability whilst their primary caregivers completed the survey independently. RESULTS : Overall, the perceptions of children with intellectual disabilities and of primary caregivers showed similarities regarding attendance and activities considered important. On group level, both children and primary caregivers perceived the child to have a high level of attendance of Formal learning in school, Family mealtime, Interacting with family and Celebrations. An overall poor agreement in perceived frequency of attendance was found. However, in child-primary cargiver-dyads poor agreement in perceived frequency of attendance was found. CONCLUSIONS : While primary caregivers and children’s ratings of attendance and selection of the most important activities appeared somewhat similar, there was a noted difference, in that primary caregivers’ were uniform in their selection, whilst there was a diversity in the selection of activities amongst children.The South African National Research Foundation (NRF) (101566) and the Swedish Foundation for International Cooperation in Research and Higher Education (STINT) (SA2015-6253).https://www.elsevier.com/locate/redevdis2021-09-01hj2021Centre for Augmentative and Alternative Communication (CAAC

Ability and disability in autism spectrum disorder:a systematic literature review employing the International Classification of Functioning, Disability and Health-Children and Youth version

Objective: This study is the first in a series of four empirical investigations to develop International Classification of Functioning, Disability and Health (ICF) Core Sets for Autism Spectrum Disorder (ASD). The objective was to use a systematic review approach to identify, number, and link functional ability and disability concepts used in the scientific ASD literature to the nomenclature of the ICF-CY (Children and Youth version of the ICF, covering the life span). Methods: Systematic searches on outcome studies of ASD were carried out in Medline/PubMed, PsycINFO, ERIC and Cinahl, and relevant functional ability and disability concepts extracted from the included studies. These concepts were then linked to the ICF-CY by two independent researchers using a standardized linking procedure. New concepts were extracted from the studies until saturation of identified ICF-CY categories was reached. Results: Seventy-one studies were included in the final analysis and 2475 meaningful concepts con tained in these studies were linked to 146 ICF-CY categories. Of these, 99 categories were considered most relevant to ASD (i.e., identified in at least 5% of the studies), of which 63 were related to Activities and Participation, 28 were related to Body functions, and 8 were related to Environmental factors. The five most frequently identified categories were basic interpersonal interactions (51%), emotional functions (49%), complex interpersonal interactions (48%), attention functions (44%), and mental functions of language (44%). Conclusion: The broad variety of ICF-CY categories identified in this study reflects the heterogeneity of functional differences found in ASD—both with respect to disability and exceptionality—and underlines the potential value of the ICF-CY as a framework to capture an individual's functioning in all dimensions of life. The current results in combination with three additional preparatory studies (expert survey, focus groups, and clinical study) will provide the scientific basis for defining the ICF Core Sets for ASD for multipurpose use in basic and applied research and every day clinical practice of ASD. Autism Res 2015, 8: 782–794. © 2015 The Authors Autism Research published by Wiley Periodicals, Inc. on behalf of International Society for Autism Research

Towards an ICF core set for ADHD : a worldwide expert survey on ability and disability

This is the second in a series of four empirical studies designed to develop International Classification of Functioning, Disability and Health (ICF and Children and Youth version, ICF-CY) core sets for attention deficit hyperactivity disorder (ADHD). The objective of this stage was to gather the opinions from international experts on which ability and disability concepts were considered relevant to functioning in ADHD. An email-based survey was carried out amongst international experts in ADHD. Relevant functional ability and disability concepts were extracted from their responses and linked to the ICF/-CY categories by two independent researchers using a standardised linking procedure. 174 experts from 11 different disciplines and 45 different countries completed the survey. Meaningful concepts identified in their responses were linked to 185 ICF/-CY categories. Of these, 83 categories were identified by at least 5 % of the experts and considered the most relevant to ADHD: 30 of these were related to Body functions (most identified: attention functions, 85 %), 30 to Activities and Participation (most identified: school education, 52 %), 20 to Environmental factors (most identified: support from immediate family, 61 %), and 3 to Body structures (most identified: structure of brain, 83 %). Experts also provided their views on particular abilities related to ADHD, naming characteristics such as highenergy levels, flexibility and resiliency. Gender differences in the expression of ADHD identified by experts pertained mainly to females showing more internalising (e.g. anxiety,low self-esteem) and less externalising behaviours (e.g. hyperactivity), leading to a risk of late- and under-diagnosis in females. Results indicate that the impact of ADHD extends beyond the core symptom domains, into all areas of life and across the lifespan. The current study in combination with three additional preparatory studies (comprehensive scoping review, focus groups, clinical study) will provide the scientific basis to define the ADHD ICF/-CY core sets for multi-purpose use in basic and applied research and every day clinical practice