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25-02-2019 | Brief Report

Brief Report: Participation of Black and African-American Families in Autism Research

Auteurs: Wendy E. Shaia, Helen M. Nichols, Sarah Dababnah, Karen Campion, Nicole Garbarino

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 5/2020

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Abstract

Black and African-American families are underrepresented in research on autism spectrum disorder (ASD) and few studies have explored how to increase their involvement. To address this gap in the literature, this study explored the perspectives of 22 Black families raising children with ASD in order to identify facilitators and barriers to research participation; as well as suggestions to increase their involvement in ASD studies. Facilitators to research involvement included a desire to contribute to ASD research inclusive of Black families; to seek information and support for child and/or caregiver; and, to engage with culturally responsive research team members. Barriers to research involvement included stigma; denial, shame, and/or embarrassment; distrust of the research process; lack of time/interest; and research material inaccessibility or literacy issues.
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Metagegevens
Titel
Brief Report: Participation of Black and African-American Families in Autism Research
Auteurs
Wendy E. Shaia
Helen M. Nichols
Sarah Dababnah
Karen Campion
Nicole Garbarino
Publicatiedatum
25-02-2019
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 5/2020
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-019-03926-0