Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services

Aubyn Stahmer, Sarah Vejnoska, Suzannah Iadarola, Diondra Straiton, Francisco Rienosa Segovia, Paul Luelmo, Elizabeth H. Morgan, Hyon Soo Lee, Asim Javed, Briana Bronstein, Samantha Hochheimer, Eun Mi Cho, Aritz Aranbarri, David Mandell, Elizabeth Mc Ghee Hassrick, Tristram Smith, Connie Kasari

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
JournalJournal of Racial and Ethnic Health Disparities
DOIs
StatePublished - Jan 1 2019

Fingerprint

Autistic Disorder
autism
Caregivers
caregiver
Hispanic Americans
Focus Groups
qualitative method
Cognition
national minority
community
English language
speaking
cognition
quality of life
experience
low income
Language
Group
Quality of Life
Interviews

Keywords

  • Autism spectrum disorder
  • Cross-cultural
  • Parent perspectives
  • Service access

ASJC Scopus subject areas

  • Health(social science)
  • Anthropology
  • Sociology and Political Science
  • Health Policy
  • Public Health, Environmental and Occupational Health

Cite this

Caregiver Voices : Cross-Cultural Input on Improving Access to Autism Services. / Stahmer, Aubyn; Vejnoska, Sarah; Iadarola, Suzannah; Straiton, Diondra; Segovia, Francisco Rienosa; Luelmo, Paul; Morgan, Elizabeth H.; Lee, Hyon Soo; Javed, Asim; Bronstein, Briana; Hochheimer, Samantha; Cho, Eun Mi; Aranbarri, Aritz; Mandell, David; Hassrick, Elizabeth Mc Ghee; Smith, Tristram; Kasari, Connie.

In: Journal of Racial and Ethnic Health Disparities, 01.01.2019.

Research output: Contribution to journalArticle

Stahmer, A, Vejnoska, S, Iadarola, S, Straiton, D, Segovia, FR, Luelmo, P, Morgan, EH, Lee, HS, Javed, A, Bronstein, B, Hochheimer, S, Cho, EM, Aranbarri, A, Mandell, D, Hassrick, EMG, Smith, T & Kasari, C 2019, 'Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services', Journal of Racial and Ethnic Health Disparities. https://doi.org/10.1007/s40615-019-00575-y
Stahmer, Aubyn ; Vejnoska, Sarah ; Iadarola, Suzannah ; Straiton, Diondra ; Segovia, Francisco Rienosa ; Luelmo, Paul ; Morgan, Elizabeth H. ; Lee, Hyon Soo ; Javed, Asim ; Bronstein, Briana ; Hochheimer, Samantha ; Cho, Eun Mi ; Aranbarri, Aritz ; Mandell, David ; Hassrick, Elizabeth Mc Ghee ; Smith, Tristram ; Kasari, Connie. / Caregiver Voices : Cross-Cultural Input on Improving Access to Autism Services. In: Journal of Racial and Ethnic Health Disparities. 2019.
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