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.

Family Management on Children with Autism

“…Autism Spectrum Disorder (ASD) was a series of symptoms due to brain nerve damage and growth disorder which cause children to have communication and socialization disorder (Bimantara et al, 2015;Kurniawan & Rakhmawati, 2018). The important role of parent was needed to identify and manage functional disorder on children with Autism Spectrum Disorder (ASD) (Viljoen et al, 2021). The children with autism have characteristics of difficult to focus, get bored quickly, and unable to control unwanted motoric movement (Al Irsyadi & Rohmah, 2017).…”

“…Choosing an appropriate and accessible therapy place was also a challenge for parents. A lot of geographical difference of the region such as urban areas and remote areas could cause a different health service system (Viljoen et al, 2021). The other factors were diagnosis delay, referral process, insufficient primary service officer and availability of health service (de Vries, 2016;Franz et al, 2017).…”

“…The functional disorder on children was the main source for parents to look for help. Meanwhile, physical disorder on children could cause stress and life quality disorder of parents (Viljoen et al, 2021). The psychological condition of parents might change too along with the time passing according to the children development and change of parenting burden, also role and responsibility within the family (Hodgetts et al, 2015).…”

“…The challenge that must be encountered by a single parent was to accept stigma and negative opinion from social environment or family. The family sometimes did not provide support, instead of blaming the parents because of having different or abnormal child (Viljoen et al, 2021;Zhao & Fu, 2022).…”

Encanto, prática e compromisso com a produção e a disseminação da ciência do comportamento aplicada

“…Esses resultados corroboram achados de outros trabalhos e pesquisas de revisão sobre perspectivas parentais de indivíduos com TEA realizados ao redor do mundo. Os familiares das localidades citadas encontram barreiras comuns e recorrentes, como escassez de profissionais qualificados para o atendimento ao TEA, infraestrutura de saúde pública insuficiente, alto custo dos serviços de saúde mental, estigma que envolve o transtorno, consciência limitada da população em geral, grandes distâncias a serem vencidas para visitas a profissionais e pouco acesso a avaliação, tratamento e instrumentos no idioma nativo (Araripe et al, 2022;Dawson-Squibb et al, 2020;Viljoen et al, 2020). Daí, impõem-se questões éticas subjacentes no desenvolvimento de pesquisas com TEA e sobre capacitação de familiares envolvidos com o diagnóstico, em tais localidades do mundo (Daley et al, 2013), sempre examinando e buscando contemplar a validade social, como já mencionado.…”