Shakila Dada1, Anna Karin Andersson2, Adele May3, Elisabeth Elgmark Andersson2, Mats Granlund2, Karina Huus2. 1. Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa. Electronic address: shakila.dada@up.ac.za. 2. CHILD Research Group, Swedish Institute for Disability Research, School of Health and Welfare, Jönkoping University Sweden, Sweden. 3. Centre for Augmentative and Alternative Communication, University of Pretoria, South Africa.
Abstract
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 & 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 ofFormal 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.
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 & 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 ofFormal 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.
Authors: Alecia Samuels; Shakila Dada; Karin Van Niekerk; Patrik Arvidsson; Karina Huus Journal: Int J Environ Res Public Health Date: 2020-09-15 Impact factor: 3.390