This is the accepted version of a paper published in Patient Education and Counseling. This paper has been peer-reviewed but does not include the final publisher proof-corrections or journal pagination.

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.

Introduction Social validation or the inclusion of stakeholders in the research process is beneficial, as it may decrease bias, increases efficacy, and prevents harm. For direct stakeholders such as individuals with autism spectrum disorder (ASD), social validation has mostly included participants who do not experience significant speech, language, and communication limitations while frequently omitting individuals with ASD who have complex communication needs (CCN). The presence of CCN indicates that augmentative and alternative communication (AAC) strategies are needed for individuals to express themselves. Social validation should not be limited to being participants in an intervention but should include involvement in the research process. This requires an understanding of the current trends, levels, and mechanisms of involvement in AAC research. Purpose This review aimed to identify and describe the inclusion of direct stakeholders with ASD in the social validation of AAC research. Method A scoping review was conducted following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews) methodology to identify AAC research that included stakeholders with ASD (direct and indirect) for social validation and to evaluate their level of involvement using the Typology of Youth Participation and Empowerment pyramid framework. Results Twenty-four studies were identified. Studies primarily included indirect stakeholders (e.g., caregivers) giving in-depth perspectives, while direct stakeholders were limited to being intervention participants. Conclusions Voices of direct stakeholders with ASD and CCN remain limited or excluded in research. Reasons for the exclusion of individuals with ASD and CCN from research and strategies for future inclusion are raised and discussed.

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.

Introduction: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. Method: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities.Results: Six youth aged 19-34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum.