Parental perspectives of functioning in their children with autism spectrum disorder: A global scoping review

Abstract

No reviews to date have summarized the views of parents on the functional challenges and/or strengths of their children with autism spectrum disorder. We set out to perform a scoping review aiming (a) to identify and collate global results to provide a broad description of parental perspective of functioning research and (b) to summarize these using the International Classification of Functioning Disability and Health–Child and Youth version framework. The International Classification of Functioning Disability and Health provides a language to describe the functional skills of an individual with a health condition in terms of their body structures, body functions, activities and participation, their environmental and personal factors. Given the influence that context has on functioning, and the potential impact of economic status on availability of resources, we were specifically interested to compare perspectives from high-income countries and low-/middle-income countries. Two researchers conducted a comprehensive search of English peer-reviewed studies published between 1990 and June 2016. Articles were accessed and summarized using thematic analysis. Meaningful phrases were extracted from key findings and linked to second-level International Classification of Functioning Disability and Health–Child and Youth categories following international linking rules. Thirty-three studies were identified of which only six originated from low/middle-income countries ( n = 6/33, 18%). Two studies compared perspectives from low-/middle-income countries and high-income countries ( n = 2/33, 6%). Functional themes from high-income countries included a range across the International Classification of Functioning Disability and Health–Child and Youth bio-psychosocial framework while functional themes from low-/middle-income countries were predominantly focused on environmental factors. We propose further research should consider a systematic comparison of high-income and low/middle-income countries across functional categories to get a more accurate impression of the impact of context on functioning. Lay abstract No paper to date has summarized parents’ views on the functional challenges and/or strengths of their children with autism spectrum disorder. In this review we set out to perform a scoping review aiming to (a) find and compare existing research from around the globe on parental perception of functioning and (b) summarize results from these papers using the International Classification of Functioning Disability and Health–Child and Youth version framework. Since we know that the place and circumstances we live in can have a significant influence on our functioning in daily life, we were specifically interested in comparing perceptions from high-income countries and low-/middle-income countries. Two researchers conducted a comprehensive search of English studies published between 1990 and June 2016. Papers were summarized and key findings were linked to International Classification of Functioning Disability and Health–Child and Youth categories. Thirty-three studies were identified, of which most were conducted in high-income countries ( n = 25/33, 76%) with only six studies in low/middle-income countries ( n = 6/33, 18%). Two studies compared views from low/middle-income and high-income countries ( n = 2/33, 6%). Functional themes from high-income countries included a range across the International Classification of Functioning Disability and Health–Child and Youth framework while functional themes from low-/middle-income countries were mostly focused on environmental factors. It was difficult to directly compare studies from low/middle-income and high-income countries because they investigated and discussed such different parts of functioning. We suggest that future research should use an approach that will allow researchers to directly compare functional categories in order to get a more accurate impression of the impact of context on functioning.