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