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Journal of Autism and Developmental Disorders

Gepubliceerd in:

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

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.

vorige artikel Brief Report: A Gene Enrichment Approach Applied to Sleep and Autism

volgende artikel A Systematic Network of Autism Primary Care Services (SYNAPSE): A Model of Coproduction for the Management of Autism Spectrum Disorder

Within the African diaspora, individuals have varying preferences regarding self-identification as “Black”, “African American”, or other terms (Cross 1991). Although we recognize this diversity, we have chosen to use the term “Black” throughout this article to refer to any individuals of African descent, for purposes of inclusivity and consistency.

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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

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