Community participation and environment of children with and without autism spectrum disorder: parent perspectives

Egilson, Snæfríður Þóra; Jakobsdóttir, Gunnhildur; Ólafsson, Kjartan; Leósdóttir, Þóra

doi:10.1080/11038128.2016.1198419

Cited by 60 publications

(75 citation statements)

References 45 publications

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“…With respect to psychological aspects, children may additionally develop self-identity and self-esteem when interacting with their peers or adults during activity participation [9]. Despite the importance of participation, preschool-aged children with ASD have been reported to participate less in educational, recreational, community, and social activities, compared to their typically developing peers [5,13,14].…”

Section: Introductionmentioning

confidence: 99%

The Relationship between Affiliate Stigma in Parents of Children with Autism Spectrum Disorder and Their Children’s Activity Participation

Lam

Tsang

et al. 2020

IJERPH

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Children with autism spectrum disorder (ASD) are reported to participate less in everyday activities, and their parents face stigma on account of having a child with ASD, which they often internalize as affiliate stigma. Studies have examined the impact of affiliate stigma on parents’ psychological well-being and social behaviors, but little is known about how affiliate stigma impacts their children’s activity participation. This study aimed to investigate the relationship between parents’ affiliate stigma and activity participation of their children with ASD. Sixty-three parents of children with ASD (aged 2–6 years) were recruited. They completed questionnaires, which captured affiliate stigma, their child’s participation (frequency and involvement) in home, preschool, and community activities, and demographic characteristics. Results indicated that these parents had a moderate level of affiliate stigma, which did not correlate with the frequency of their children’s participation in activities. However, the parents’ affiliate stigma was found to have negative impacts on their children’s involvement in overall community participation and participation in one particular activity at home. The findings highlight the importance of destigmatization of parents of children with ASD in order to promote their children’s participation in community activities.

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Section: Introductionmentioning

confidence: 99%

The Relationship between Affiliate Stigma in Parents of Children with Autism Spectrum Disorder and Their Children’s Activity Participation

Lam

Tsang

et al. 2020

IJERPH

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“…The vast majority (90 percent) of parents of children with ASD think that persons with autism are stigmatized, and stigma plays a significant role in predicting how difficult life is for the parents [33]. In addition to stigmatizing peer and adult attitudes, limitations of services (e.g., availability of support), systems (e.g., affordability), and policies (e.g., environmental arrangements) contribute to reduced access to community participation [15].…”

Section: Challenges To Making Theater Accessible To People With Asdmentioning

confidence: 99%

“…For example, children with ASD often have difficulty attending movies due to the crowds, flickering lights, darkness, and loud noise. According to a recent report, children with ASD participate less frequently in community-based events than those without ASD due to a combination of social and physical barriers and fewer supports [15]. Moreover, attendance at events is often limited by their affordability and accessibility.…”

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confidence: 99%

Autism, Art, and Accessibility to Theater

Corbett¹

2016

AMA Journal of Ethics

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Art has the ability to entertain and educate about many vital aspects of the human experience. Recently, innovative endeavors are providing greater accessibility to theatrical productions for people with autism spectrum disorder (ASD), prompting ethical questions about how accommodations to provide access to art and culture should be made, and for whom. This article uses an attributional model of stigma to explain potential differences in knowledge, attitudes, and behavior toward people with mental illness. This social cognitive model also provides clues about how to spur social change through translational education, familiarization, and advocacy to permit greater access to art for people with disabilities.

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“…Informed by results of qualitative interviews with parents [19], the PEM-CY was tested primarily with 576 parents of children with and without disability from Canada and the USA [18] and was found to have moderate to good reliability and validity. The PEM-CY has been used to measure participation of children with specific diagnoses, such as unilateral cerebral palsy [20] and autism spectrum disorder [21], to compare participation of children with different disabilities [22] and between different settings such as home, school and community [23]. The PEM-CY has been translated and culturally adapted into a number of languages, including Korean [16], Icelandic [21], Hindi (Roopa Srinivasan, personal communication), Dutch (Eftje Kern, personal communication), and Flemish (Mareike Coussens, personal communications).…”

mentioning

confidence: 99%

“…The PEM-CY has been used to measure participation of children with specific diagnoses, such as unilateral cerebral palsy [20] and autism spectrum disorder [21], to compare participation of children with different disabilities [22] and between different settings such as home, school and community [23]. The PEM-CY has been translated and culturally adapted into a number of languages, including Korean [16], Icelandic [21], Hindi (Roopa Srinivasan, personal communication), Dutch (Eftje Kern, personal communication), and Flemish (Mareike Coussens, personal communications). A German translation of the PEM-CY was developed by a group in Austria [26], however, it was not culturally adapted beyond Austria.…”

mentioning

confidence: 99%

Cross-cultural adaptation of the Participation and Environment Measure for Children and Youth (PEM-CY) into German: a qualitative study in three countries

Krieger

Schulze

Boyd

et al. 2020

Preprint

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Background Concepts such as participation and environment may differ across cultures.Consequently, to use a measure like the Participation and Environment Measure for Children and Youth (PEM-CY) in other than the original English-speaking contexts, cultural adaptation needs to be assured. The aim of this study was to cross-culturally translate and adapt the PEM-CY into German as it is used in Germany, Austria and Switzerland.Methods Fifteen parents of children and adolescents with disabilities from three German speaking countries participated in three rounds of think-aloud interviews. We followed the procedure of cultural equivalence guidelines including two additional steps. Data was analyzed by content analysis using semantic, idiomatic, experiential and conceptual equivalence.Results Results show adaptations mainly focused on experiential and conceptual equivalence. Examples of experiential equivalence included adapting the examples of activities in the PEM-CY toreflect typical ones in German speaking countries. Conceptual equivalence mainly addressed aspects of "involvement" and "environment" of children and adolescents and was reached through adaptations such as enhanced instructions and structures, and additional definitions. Conclusion This study presents a cross-cultural translation and adaptation process to develop aGerman version of the PEM-CY that is suitable for Germany, Austria and Switzerland. As participation and environment are both complex concepts to measure, conceptual equivalence posed the highest challenges for this cultural adaptation. A culturally adapted version of PEM-CY (German) is now available for research, practice and further validation.

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Community participation and environment of children with and without autism spectrum disorder: parent perspectives

Abstract: Occupational therapists should focus on decreasing environmental challenges in their efforts to facilitate participation of children with ASD in the community.

Cited by 60 publications

References 45 publications

The Relationship between Affiliate Stigma in Parents of Children with Autism Spectrum Disorder and Their Children’s Activity Participation

The Relationship between Affiliate Stigma in Parents of Children with Autism Spectrum Disorder and Their Children’s Activity Participation

Autism, Art, and Accessibility to Theater

Cross-cultural adaptation of the Participation and Environment Measure for Children and Youth (PEM-CY) into German: a qualitative study in three countries

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