Agreement between participation ratings of children with intellectual disabilities and their primary caregivers.
Caregiver and child with ID often disagree on activity frequency, so collect both views before you plan.
01Research in Context
What this study did
Dada et al. (2020) asked kids with intellectual disability how often they join everyday activities.
They also asked the child’s main caregiver the same questions.
Then they compared the two sets of answers to see if they matched.
What they found
At the group level, both sides said the child joined high-attendance events like school.
But when they looked pair-by-pair, child and caregiver rarely agreed on how often each activity happened.
A smooth average can hide big single-dyad gaps.
How this fits with other research
Perez et al. (2015) saw the same split in higher-functioning teens with ASD. The teens rated their own social skill use higher than parents did, a direct conceptual replication.
Fung et al. (2018) at first seems opposite: parents and day-care staff agreed well on early ASD signs. The difference is who is rating. When two adults watch the child, views line up; when the child self-reports, views diverge.
Choi et al. (2022) adds that even after ABA, caregiver Vineland scores can stay flat while the child’s own goals move ahead, again showing proxy scores miss personal progress.
Why it matters
If you write goals or progress notes from only caregiver recall, you may miss the child’s true day-to-day experience. Take two minutes to ask the child, use pictures, or let them tap a tablet scale. Blending both views gives you a richer, fairer baseline and keeps treatment centered on the client’s own world.
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02At a glance
03Original 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.
Research in developmental disabilities, 2020 · doi:10.1016/j.ridd.2020.103715