Journal article
Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services
Journal of racial and ethnic health disparities, v 6(4), pp 752-773
11 Mar 2019
PMID: 30859514
Featured in Collection : UN Sustainable Development Goals @ Drexel
Abstract
Decades of research have established that racial ethnic minority, low-income, and/or non-English speaking children with autism spectrum disorder (ASD) are diagnosed later than white children, and their families experience greater difficulty accessing services in the USA. Delayed access to timely diagnosis and early intervention may impact child outcomes and family quality of life. Despite their cognition of these disparities and their significant impact on the lives of those affected, explanations for the barriers experienced by underserved families are elusive, likely due to the complex interaction between structural and family factors. This study used qualitative methods to gather family and provider perspectives of perceived barriers and facilitators to obtaining an ASD diagnosis and accessing ASD-related services for underserved families. Themes from focus groups and interviews with families from three cultural groups (black, Hispanic/Latino, and Korean) and three primary languages (English, Korean, and Spanish) highlight specific barriers related to family, community, and systemic challenges as well as facilitators to accessing care for these populations. Family experiences are expanded upon with viewpoints from the providers who work with them. Recommendations are made for reducing disparities in the existing ASD service system including increasing professional, family, and community education; increasing culturally responsive care; improving provider-family partnerships; and addressing practical challenges to service access.
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Details
- Title
- Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services
- Creators
- Aubyn C. Stahmer - Mind (Poland)Sarah Vejnoska - Mind (Poland)Suzannah Iadarola - University of Rochester Medical CenterDiondra Straiton - University of PennsylvaniaFrancisco Rienosa Segovia - Department of Psychiatry, University of California, Los Angeles Graduate School of Education & Information Studies & Center for Autism Research & Treatment, UCLA Semel Institute 68-268, Los Angeles, CA, 90024, USA.Paul Luelmo - Center for Autism and Related DisordersElizabeth H Morgan - Drexel UniversityHyon Soo Lee - University of California, Los AngelesAsim Javed - University of Rochester Medical CenterBriana Bronstein - University of PennsylvaniaSamantha Hochheimer - University of Rochester Medical CenterEunMi Cho - California State University, SacramentoAritz Aranbarri - Boston Children's HospitalDavid Mandell - University of PennsylvaniaElizabeth McGhee Hassrick - Drexel UniversityTristram Smith - University of Rochester Medical CenterConnie Kasari - University of California, Los Angeles
- Publication Details
- Journal of racial and ethnic health disparities, v 6(4), pp 752-773
- Publisher
- Springer Nature
- Resource Type
- Journal article
- Language
- English
- Academic Unit
- A.J. Drexel Autism Institute; Drexel University
- Web of Science ID
- WOS:000477609500012
- Scopus ID
- 2-s2.0-85062885747
- Other Identifier
- 991020099425904721
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- Collaboration types
- Domestic collaboration
- International collaboration
- Web of Science research areas
- Public, Environmental & Occupational Health