A Systematic Review Examining Caregivers' of Color Experiences with the Diagnostic Process of Autism Spectrum Disorder

Autor/inn/en	Fisher, Allison P.; Lynch, James D.; Jacquez, Farrah M.; Mitchell, Monica J.; Kamimura-Nishimura, Kelly I.; Wade, Shari L.
Titel	A Systematic Review Examining Caregivers' of Color Experiences with the Diagnostic Process of Autism Spectrum Disorder
Quelle	In: Autism: The International Journal of Research and Practice, 27 (2023) 4, S.876-889 (14 Seiten) PDF als Volltext Verfügbarkeit
Zusatzinformation	ORCID (Fisher, Allison P.)
Sprache	englisch
Dokumenttyp	gedruckt; online; Zeitschriftenaufsatz
ISSN	1362-3613
DOI	10.1177/13623613221128171
Schlagwörter	Autism Spectrum Disorders; Caregivers; Racial Differences; Ethnicity; Cultural Relevance; Racism; Racial Discrimination; Clinical Diagnosis; Barriers; Interpersonal Communication; Minority Groups; Children; Parent Attitudes; Allied Health Personnel; Family (Sociological Unit); Affordances + Suchen Sie Ihr Suchwort? Autism; Autismus; Caregiver; Carer; Betreuungsperson; Pfleger; Rassenunterschied; Ethnizität; Rassismus; Racial bias; Interpersonale Kommunikation; Ethnische Minderheit; Child; Kind; Kinder; Elternverhalten; Familie
Abstract	There are racial/ethnic disparities in the diagnosis of autism spectrum disorder, including delayed diagnosis, discrimination, and a lack of culturally responsive care. The perspectives of caregivers of color are critical in improving delivery of equitable care. We systematically reviewed articles pertaining to experiences with the diagnostic process among caregivers of color. We entered key terms into five databases to identify literature from 2000 to 2021. Fifteen qualitative studies met inclusion criteria, representing 253 caregivers. We used inductive methods to examine themes across racial and ethnic groups and assessed the quality of included studies. Families of color identified multiple factors that negatively affected the diagnostic process. Systems-level factors included long wait lists and financial concerns. Provider-level factors included minimization of caregiver concerns, a "wait and see" approach, biases, and lack of knowledge. Caregivers also described individual (e.g. knowledge) and family factors (e.g. stigma) that delayed diagnosis and complicated the diagnostic process. Communication barriers were commonly reported, which impeded understanding of autism spectrum disorder. Some families described providers, other individuals, community networks, and self-advocacy as facilitators. Interventions targeting systems- (e.g. Medicaid expansion) and provider-level (e.g. increase training in autism spectrum disorder) factors are needed to increase equity in the autism spectrum disorder diagnostic process. (As Provided).
Anmerkungen	SAGE Publications. 2455 Teller Road, Thousand Oaks, CA 91320. Tel: 800-818-7243; Tel: 805-499-9774; Fax: 800-583-2665; e-mail: journals@sagepub.com; Web site: https://sagepub.com
Erfasst von	ERIC (Education Resources Information Center), Washington, DC
Update	2024/1/01