Abstract
Caregivers are an intrinsic component of the environment of children with intellectual disabilities. However, caregivers’ capacity to support children’s participation may be linked to the social support that they, as caregivers, receive. Social support may increase participation, educational, psychological, medical and financial opportunities. However, there is a lack of information on social support in middle-income countries. The current study described and compared the social support of caregivers of children with intellectual disabilities by using the Family Support Survey (FSS) in India and South Africa. The different types of social support were subsequently considered in relation to participation, using the Children’s Assessment of Participation and Enjoyment (CAPE). One hundred caregiver–child dyads from India and 123 from South Africa participated in this study. The data were analysed using non-parametric measures. Indian caregivers reported greater availability of more helpful support than did the South African caregivers. Social support was associated with children’s participation diversity (India) and intensity (South Africa). The child-/caregiver-reported participation data showed different associations with participation. Results from this study suggest that perceived social support of caregivers differs between countries and is associated with their child’s participation. These factors need to be considered when generalising results from different countries.
Highlights
IntroductionThe Child and Youth Version (ICF-CY) [2] highlighted participation as a critical health outcome [3]
The introduction of the International Classification of Functioning, Disability and Health (ICF) [1]and the Child and Youth Version (ICF-CY) [2] highlighted participation as a critical health outcome [3].participation has been highlighted as a human right for persons with disabilities at the United Nations Convention on the Rights of Persons with Disabilities [4]
The internal consistency of the Family Support Survey (FSS) [72] is reported on first, followed by the social support perceived by caregivers
Summary
The Child and Youth Version (ICF-CY) [2] highlighted participation as a critical health outcome [3]. Participation has been highlighted as a human right for persons with disabilities at the United Nations Convention on the Rights of Persons with Disabilities [4]. In spite of the fact that participation is reported to be influenced by personal and environmental factors [7,8,9], the bulk of research on participation has focused on personal factors. The current research has provided evidence of decreased participation for children with disabilities [9,10,11,12,13,14] and specific patterns of participation associated with the type and severity of a disability [15,16,17,18,19]. Studies considering the impact of environmental factors are more limited in number, but as highlighted by Anaby et al in
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