The participation of children with intellectual disabilities : including the voices of children and their caregivers in India and South Africa

Abstract

There is a shortage of research on the participation of children with intellectual disabilities from middle-income countries. Also, most child assessments measure either the child’s or the caregiver’s perceptions of participation. Participation, however, is an amalgamation of both perspectives, as caregivers play a significant role in both accessing and facilitating opportunities for children’s participation. This paper reports on both perceptions—those of children with intellectual disabilities and those of their caregiver, in India and South Africa. A quantitative group comparison was conducted using the Children’s Assessment of Participation and Enjoyment (CAPE) that was translated into Bengali and four South African languages. One hundred child–caregiver dyads from India and 123 pairs from South Africa participated in the study. The results revealed interesting similarities and differences in participation patterns, both between countries and between children and their caregivers. Differences between countries were mostly related to the intensity of participation, with whom, and where participation occurred. Caregiver and child reports differed significantly regarding participation and the enjoyment of activities. This study emphasises the need for consideration of cultural differences when examining participation and suggests that a combined caregiver-and-child-reported approach may provide the broadest perspective on children’s participation.