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.
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.
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.
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