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 language | English (US) |
|---|---|
| Journal | Journal of Racial and Ethnic Health Disparities |
| DOIs | |
| State | Published - Jan 1 2019 |
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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 journal › Article
}
TY - JOUR
T1 - Caregiver Voices
T2 - Cross-Cultural Input on Improving Access to Autism Services
AU - Stahmer, Aubyn
AU - Vejnoska, Sarah
AU - Iadarola, Suzannah
AU - Straiton, Diondra
AU - Segovia, Francisco Rienosa
AU - Luelmo, Paul
AU - Morgan, Elizabeth H.
AU - Lee, Hyon Soo
AU - Javed, Asim
AU - Bronstein, Briana
AU - Hochheimer, Samantha
AU - Cho, Eun Mi
AU - Aranbarri, Aritz
AU - Mandell, David
AU - Hassrick, Elizabeth Mc Ghee
AU - Smith, Tristram
AU - Kasari, Connie
PY - 2019/1/1
Y1 - 2019/1/1
N2 - 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.
AB - 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.
KW - Autism spectrum disorder
KW - Cross-cultural
KW - Parent perspectives
KW - Service access
UR - http://www.scopus.com/inward/record.url?scp=85062885747&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85062885747&partnerID=8YFLogxK
U2 - 10.1007/s40615-019-00575-y
DO - 10.1007/s40615-019-00575-y
M3 - Article
AN - SCOPUS:85062885747
JO - Journal of racial and ethnic health disparities
JF - Journal of racial and ethnic health disparities
SN - 2197-3792
ER -