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Parent and Provider Perspectives on the Diagnosis and Management of Autism in a Chinese Immigrant Population

Sakai, Christina, MD*; Mulé, Christina, PhD*; LeClair, Amy, PhD; Chang, Frances, MEd*; Sliwinski, Samantha, MPH*; Yau, Yoyo, MA; Freund, Karen M., MD, MPH

Journal of Developmental & Behavioral Pediatrics: May 2019 - Volume 40 - Issue 4 - p 257–265
doi: 10.1097/DBP.0000000000000660
Original Article
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Objective: Minority families experience disparities in the diagnosis and management of autism spectrum disorder (hereafter “autism”). To date, the experiences of Chinese immigrant families in the United States have not been explored. Utilizing parent and provider perspectives, this research sought to identify barriers and facilitators to the diagnosis and management of autism among Chinese immigrant children.

Methods: We conducted semistructured qualitative interviews with 16 parents of Chinese children diagnosed with autism and 16 providers who assist in the diagnosis and management of autism. Participant characteristics were analyzed utilizing descriptive statistics. Interviews were audiorecorded, transcribed, translated, and independently coded by 2 researchers until consensus was reached. Coded data were analyzed using a modified grounded therapy approach.

Results: Parents and providers both identified cultural beliefs as an influence on the understanding and acceptance of autism as a diagnosis. There was a high degree of alignment in themes related to barriers to health care access and parent-provider communication. Recommendations to improve the system of care include (1) supporting communication, (2) cultural sensitivity, and (3) care coordination programming.

Conclusion: Findings reinforce that diagnosis and treatment of autism should take into account culturally specific beliefs about child developmental norms and should address systems-, provider-, and family-level barriers.

*Department of Pediatrics, Tufts Medical Center, Tufts University School of Medicine, Boston, MA;

Clinical and Translational Sciences Institute, Tufts University School of Medicine, Boston, MA;

Boston Chinatown Neighborhood Center, Boston, MA.

Address for reprints: Christina Sakai, MD, Department of Pediatrics, Tufts Medical Center, Tufts University School of Medicine, 800 Washington St #334, Boston, MA 02111; e-mail: csakai@tuftsmedicalcenter.org.

The project described was supported by the Deborah Monroe Noonan Memorial Research Fund and received assistance from the Child Health Working Group, part of the Addressing Disparities in Asian Populations through Translational Research program at the Tufts Clinical and Translational Science Institute, supported by the National Center for Advancing Translational Sciences, the National Institutes of Health, Award Number UL1TR002544. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Disclosure: The authors declare no conflict of interest.

See related commentary on page 301

Received August 24, 2018

Accepted January 31, 2019

Copyright © 2019 Wolters Kluwer Health, Inc. All rights reserved.