Children in South Africa with and without Intellectual Disabilities’ Rating of Their Frequency of Participation in Everyday Activities

Abstract

In a low-and middle-income country (LMIC) such as South Africa, not much is known about how children with intellectual disabilities (ID) participate in everyday activities, as no studies to date have compared their participation to peers without ID from the same background. Using a newly developed, contextually valid measure of participation, Picture my Participation (PmP), 106 children with (73) and without ID (33), rated their frequency of participation in activities of daily living. Previous international research has established that children with ID tend to participate less frequently than children without ID in everyday activities outside of the school setting. However, much of this research is based on proxy ratings from caregivers rather than children with ID themselves. There is a growing body of evidence that suggests children with disabilities have uniquely different views of their own participation than their caregivers. The existing research evidence is also delimited to studies conducted predominantly in high income contexts (HICSs). Since it is universally acknowledged that participation patterns are affected by the environment, it is important to evaluate the generalizability of the current evidence to LMICs. The current study found that there were many similar patterns of participation between the two groups although significant differences were noted in social, community, leisure and self-care activities. We compare these results to findings from studies conducted in HICs and find that there are similarities but also differences across contexts. This study highlights the importance of gaining a child’s perspective of participation and understanding how intellectual disability can affect participation relative to peers without ID in LMICS.

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“…A comparative study demonstrated that children with disabilities from low-income families had disadvantages regarding social and community participation, access to health service and self-care compared with peers from high-income families. 10 Moreover, those results corroborated with our caregivers' complaints about the socioeconomic scenario, evidencing the need for complex dynamics for the care of Recent findings on the perception of parents and health professionals about the care of children with CZS showed positive aspects of patient-centred care, highlighting the quality of the SUS to meet the biopsychosocial demands of these children. 35 Early access to health care has positive effects on children with CZS.…”

“…35 Early access to health care has positive effects on children with CZS. 10 Our results also indicated that adequate access to health services and spatial accessibility in cities is essential for the routine organization of families with children with CZS. 34 The favourable disposition of health service (i.e., localization, spatial accessibility and transportation adequacy) for people with disabilities were a requirement for life planning of families, as observed in findings regarding the transition to adulthood of children with disabilities.…”

“…Early access to health care has positive effects on children with CZS 10 . Our results also indicated that adequate access to health services and spatial accessibility in cities is essential for the routine organization of families with children with CZS 34 .…”

“…Promoting social inclusion of children with CZS is challenging and requires lifelong professional assistance, psychological, social support and family‐centred interventions 6–8 . In this sense, the International Classification of Functioning, Disability and Health (ICF) defines participation as the ‘involvement in a life situation’ and it is influenced by environmental factors, such as physical, social and attitudinal aspects (i.e., physical features of the house and school, relationship to close family, community activities, health services, communication and transportation) 9,10 …”

“…[6][7][8] In this sense, the International Classification of Functioning, Disability and Health (ICF) defines participation as the 'involvement in a life situation' and it is influenced by environmental factors, such as physical, social and attitudinal aspects (i.e., physical features of the house and school, relationship to close family, community activities, health services, communication and transportation). 9,10 Children with disabilities have restricted access to health and educational services compared with children without disabilities. 11,12 However, monitoring children with developmental disabilities is demanding and possibly not equitable.…”