Sibling perceptions of living with a young person with <scp>D</scp>own syndrome or autism spectrum disorder: An integrated review

Mandleco, Barbara; Webb, Ann Elisabeth Mason

doi:10.1111/jspn.12117

Cited by 47 publications

(37 citation statements)

References 88 publications

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“…Understanding cultural differences in coping and adjustment has a key role to play in practice. Research shows that if age-appropriate information and support are provided, siblings can benefit from better relationships with their autistic sibling (Mandleco & Webb, 2015;Petalas, et al, 2009;Roeyers & Mycke, 1995). However, what is unclear is whether and how this information and support needs to be tailored for children in different cultures.…”

Section: Introductionmentioning

confidence: 99%

Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom

Tsai

Cebula

Liang

et al. 2018

Research in Developmental Disabilities

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Background: A child's diagnosis of autism impacts their whole family, in both positive and negative ways, that may be influenced by cultural beliefs. Aims: We aimed to describe the experiences of mothers and typically-developing siblings of children with autism in two cultural contexts. Methods: Fourteen mother-sibling dyads from Taiwan and the UK participated in semi-structured interviews. Results: Whilst there were similarities in sibling experiences, a negative tone regarding the influence of autism was more evident in Taiwan, where families also cited societal judgement and culturalspecific expectations. In the UK, a more balanced tone was apparent: mothers emphasised educating and involving the siblings. It is speculated that UK siblings had a greater understanding of their parents' stress, leading to more adaptive family dynamics. Various types of support service were mentioned in the UK, whereas the availability of social services and support appeared to be relatively limited in Taiwan. Implications:Our data suggest that cultural context may have a significant impact on the responses of the family members. This is mediated by both differences in attitudes and traditions, and availability of resources. Support for family members needs to be sensitive to such cultural differences, as well as recognising positive experiences.3

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Section: Introductionmentioning

confidence: 99%

Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom

Tsai

Cebula

Liang

et al. 2018

Research in Developmental Disabilities

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“…Em alguns casos, o irmão autista passa a ser visto mais como um filho, independentemente de ser mais novo ou mais velho, e esta inversão de papéis pode ocorrer devido à necessidade da família de se adaptar à nova situação, por isso é comum que os irmãos ajudem os pais nas tarefas diárias durante todas as fases do ciclo familiar, buscando amenizar a sobrecarga de tarefas, principalmente da mãe, pois estas se encarregam da maior responsabilidade, causando instabilidade em seu nível de estresse e equilíbrio emocional. (Mandleco & Webb, 2015;Vieira & Fernandes, 2013). Esta inversão de papéis é também chamada de parentificação, e pode ocorrer nas famílias onde há membros com deficiências, acarretando em aspectos positivos e negativos dependendo do contexto familiar (Tomeny, Barry, Fair, & Riley, 2017).…”

Section: ) Subsistema Fraternounclassified

As experiências de famílias com filhos autistas: uma revisão integrativa da literatura

Anjos

Morais

2021

CienciasPsi

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Uma revisão integrativa da literatura científica nacional e internacional sobre autismo e família analisou 91 artigos publicados entre 2013 e 2020. Prevaleceram artigos internacionais, empíricos, com delineamento qualitativo, realizados com cuidadores, com foco em experiências que levam a altos níveis de estresse, depressão e sobrecarga familiar. A análise de conteúdo dos artigos gerou quatro categorias: vivências, desafios e manutenção das relações familiares (n= 38); recursos e estratégias para enfrentar os desafios (n= 29); subsistema fraterno (n= 10); e rede de apoio social (n= 14). Os resultados são úteis para pensar pesquisas e trabalhos voltados para famílias com crianças autistas a partir de perspectivas ainda pouco estudadas e que incluem seus aspectos positivos e fortalecedores na leitura das adversidades vivenciadas.

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“…These factors highlight the unique vantage point from which siblings might speak to the strengths and positive qualities their brother or sisters might possess. Although the sibling literature has grown substantially over the last two decades (Hodapp et al, ), research in this area has focused most heavily on the quality of sibling relationships (Rossetti & Hall, ), sibling roles (Lee & Burke, ), the provision of supports to siblings (Hartling et al, ), and the personal perspectives of siblings (Mandleco & Webb, ). Additional research is needed to explore how siblings view their brothers and sisters with intellectual and developmental disabilities.…”

Section: Introductionmentioning

confidence: 99%

Seeing strengths: Young adults and their siblings with autism or intellectual disability

Carter

Carlton

Travers

2020

Research Intellect Disabil

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Background Understanding the positive qualities of individuals with intellectual and developmental disabilities can provide a much‐needed counterpoint to deficit‐based depictions of disability. Method This study examined how 163 young adults (ages 18–30) viewed the strengths of their brothers and sisters with intellectual disability or autism using the Assessment Scale for Positive Character Traits‐Developmental Disabilities (Woodard, 2009). In addition, the authors examined factors that may shape their perspectives. Results Overall, siblings' ratings of strengths were moderate to high, indicating an overall portrait of strengths. The majority of brothers and sisters with disabilities was described as having multiple strengths and their profiles on this measure were highly individualized. Lower overall ratings were associated with several variables, including not using speech as a primary mode of communication, exhibiting challenging behaviours, having autism and not currently living together. Conclusions The authors offer recommendations for future research and practice related to supporting siblings with and without disabilities.

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Sibling perceptions of living with a young person with Down syndrome or autism spectrum disorder: An integrated review

Abstract: Nurses caring for families raising youth with Down syndrome or autism spectrum disorder can enhance sibling development by providing individual interventions reflecting siblings' perceptions of the experience.

Cited by 47 publications

References 88 publications

Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom

Siblings’ experiences of growing up with children with autism in Taiwan and the United Kingdom

As experiências de famílias com filhos autistas: uma revisão integrativa da literatura

Seeing strengths: Young adults and their siblings with autism or intellectual disability

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