This article describes the family quality of life among families who are raising a young child with autism spectrum disorder. Survey research was conducted with 180 families of children with autism spectrum disorder who were receiving disability-related services in the Gauteng province of South Africa. The principle measure used was the Beach Center Family Quality of Life Scale to assess five subdomains: family interaction, parenting, emotional well-being, material/physical well-being, and disability-related support. Results indicated that families felt the most satisfied with disability-related support and the least satisfied with the family's emotional well-being. Family income, family type, and the severity level of autism were significantly associated with how satisfied families felt about their quality of life.

A higher frequency of regular family routines was strongly associated with a higher satisfaction level of FQOL. Also, cognitive appraisal of the impact of ASD acted as a mechanism through which the regularity of family routines influenced FQOL. We discuss the research and clinical implications of these findings.

ABBREVIATIONS fPRC Family of participation-related constructs LMICs Low-and middle-income countries AIM The purpose of this scoping review was to describe and map the literature available on the participation of young people (0-21y) with disabilities and/or chronic conditions living in low-and middle-income countries (LMICs). METHOD A systematic search and selection process identified 78 publications. Descriptive data were extracted using a data-charting form, and studies were mapped using the family of participation-related constructs framework. RESULTS The findings demonstrated that, although the published evidence is steadily increasing, the participation research on this vulnerable population is still either absent or very scarce in the majority of LMICs, and very little is known about the participation of children with chronic health conditions. Most studies included in this review focused on attendance or 'being there'. INTERPRETATION Although attendance is an important aspect, more needs to be done to understand children's experiences or involvement while attending, thus capturing both dimensions of participation.

No 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.

Background: Research has shown that all children and adolescents have the right to participate in their everyday life. However, little is known about what impacts the participation of children and adolescents with disabilities living in low-and middle-income countries.Objective: The present study undertakes a scoping review of research to synthesise the current literature about barriers and facilitators to participation in everyday life for children and adolescents with disabilities living in low- and middle-income countries.Method: A scoping review was conducted. The databases Psyc INFO, MEDLINE, CINAHL, Pubmed, ERIC and African Wide information were searched for studies published between 2001 and April 2018. Data was analysed using deductive content analysis. The barriers and facilitators to participation were categorised into personal factors, social factors, environmental factors, and policy and programme factors.Result: In the end, 17 articles were included for data extraction as they mentioned barriers and facilitators to participation for children and adolescents with disabilities. Most of the reviewed studies reported on barriers to participation. Only one of the studies was performed in a country classified as a low-income country; all other studies were performed in middle-income countries. The results indicate that some factors, especially social factors, could be perceived as both facilitators and barriers to participation.Conclusion: There is a lack of studies describing barriers and facilitators in low- and middle- income countries. Barriers and facilitators in proximity to the child and family are most frequently described in the literature.

A central tenant of early childhood intervention (ECI) is collaboration between professionals and the caregivers of children receiving these services. There are limited studies on caregiver perceptions of collaboration in ECI teams particularly in resource-limited countries. Sixty-four caregivers participated in this study by completing a questionnaire on their perceptions of collaboration in ECI services in South Africa. The questionnaire survey was administered in a group setting by a trained research assistant who was proficient in the Setswana language. The results revealed that caregivers have a good understanding of collaboration in ECI services. However, collaboration, in relation to family-centered practices, appeared to be undervalued by caregivers. These results are discussed and the limitations of the study as well as future recommendations are outlined.

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.