Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.
Por:
Stahmer AC, Vejnoska S, Iadarola S, Straiton D, Segovia FR, Luelmo P, Morgan EH, Lee HS, Javed A, Bronstein B, Hochheimer S, Cho E, Aranbarri A, Mandell D, Hassrick EM, Smith T and Kasari C
Publicada:
1 ago 2019
Ahead of Print:
11 mar 2019
Resumen:
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.
Filiaciones:
Stahmer AC:
Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA, 95817, USA.
Vejnoska S:
Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA, 95817, USA
Iadarola S:
Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY, 14642, USA
Straiton D:
Perelman School of Medicine, Center for Mental Health Policy and Services Research, University of Pennsylvania, 3535 Market St., Rm. 3100, Philadelphia, PA, 19104, USA
Department of Psychology, Michigan State University, 316 Physics, Rd., East Lansing, MI, 48824, USA
Segovia FR:
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
Luelmo P:
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
Department of Special Education, San Diego State University, 5500 Campanile Dr., San Diego, CA, 92182, USA
Morgan EH:
Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA, 95817, USA
Lee HS:
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
Javed A:
Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY, 14642, USA
Bronstein B:
Perelman School of Medicine, Center for Mental Health Policy and Services Research, University of Pennsylvania, 3535 Market St., Rm. 3100, Philadelphia, PA, 19104, USA
Hochheimer S:
Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY, 14642, USA
Cho E:
College of Education, California State University, Sacramento, 6000 J St., Sacramento, CA, 95819, USA
Aranbarri A:
Departments of Psychiatry, Psychology & Human Development, University of California, Davis MIND Institute, 2825 50th St, Sacramento, CA, 95817, USA
Mental Health Department, Sant Juan de Deu Barcelona Children's Hospital, Itaka Building 1st floor, Passeig Sant Joan de Déu 2, 08950 Esplugues de Llobregat, Barcelona, Catalonia, Spain
Mandell D:
Perelman School of Medicine, Center for Mental Health Policy and Services Research, University of Pennsylvania, 3535 Market St., Rm. 3100, Philadelphia, PA, 19104, USA
Hassrick EM:
A.J. Drexel Autism Institute, Drexel University, 3020 Market Street | Suite 560, Philadelphia, PA, 19104, USA
Smith T:
Division of Developmental and Behavioral Pediatrics & Strong Center for Developmental Disabilities, University of Rochester Medical Center, 265 Crittenden Blvd., Rochester, NY, 14642, USA
Kasari C:
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
Open Access
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