Latino Parents' Perspectives on Barriers to Autism Diagnosis

Abstract Objective Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children. Methods Five focus groups and 4 q...

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Veröffentlicht in:Academic pediatrics 2014-05, Vol.14 (3), p.301-308
Hauptverfasser: Zuckerman, Katharine E., MD, MPH, Sinche, Brianna, MPH, Mejia, Angie, MA, CAS, Cobian, Martiza, BA, Becker, Thomas, MD, PhD, Nicolaidis, Christina, MD, MPH
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container_end_page 308
container_issue 3
container_start_page 301
container_title Academic pediatrics
container_volume 14
creator Zuckerman, Katharine E., MD, MPH
Sinche, Brianna, MPH
Mejia, Angie, MA, CAS
Cobian, Martiza, BA
Becker, Thomas, MD, PhD
Nicolaidis, Christina, MD, MPH
description Abstract Objective Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children. Methods Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis. Results Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system. Conclusions Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.
doi_str_mv 10.1016/j.acap.2013.12.004
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We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children. Methods Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis. Results Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system. Conclusions Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.</description><identifier>ISSN: 1876-2859</identifier><identifier>EISSN: 1876-2867</identifier><identifier>DOI: 10.1016/j.acap.2013.12.004</identifier><identifier>PMID: 24767783</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Adult ; autism spectrum disorder ; Child ; Child Development Disorders, Pervasive - diagnosis ; Child, Preschool ; Delayed Diagnosis ; Female ; Health Knowledge, Attitudes, Practice ; Health Services Accessibility ; Hispanic Americans ; Humans ; Income ; Male ; Neonatal and Perinatal Medicine ; Parents ; Pediatrics ; Physician-Patient Relations ; Qualitative Research ; Social Stigma ; Young Adult</subject><ispartof>Academic pediatrics, 2014-05, Vol.14 (3), p.301-308</ispartof><rights>Academic Pediatric Association</rights><rights>2014 Academic Pediatric Association</rights><rights>Copyright © 2014 Academic Pediatric Association. Published by Elsevier Inc. All rights reserved.</rights><rights>2013 Academic pediatric Association. Published by Elsevier Inc. All rights reserved. 2013</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c510t-c8ce5098b265728cb6f74a07ce5940c4186b5e004533b1ee60209aff84177c03</citedby><cites>FETCH-LOGICAL-c510t-c8ce5098b265728cb6f74a07ce5940c4186b5e004533b1ee60209aff84177c03</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktohtml>$$Uhttps://www.sciencedirect.com/science/article/pii/S1876285913004245$$EHTML$$P50$$Gelsevier$$H</linktohtml><link.rule.ids>230,314,776,780,881,3537,27901,27902,65306</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/24767783$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Zuckerman, Katharine E., MD, MPH</creatorcontrib><creatorcontrib>Sinche, Brianna, MPH</creatorcontrib><creatorcontrib>Mejia, Angie, MA, CAS</creatorcontrib><creatorcontrib>Cobian, Martiza, BA</creatorcontrib><creatorcontrib>Becker, Thomas, MD, PhD</creatorcontrib><creatorcontrib>Nicolaidis, Christina, MD, MPH</creatorcontrib><title>Latino Parents' Perspectives on Barriers to Autism Diagnosis</title><title>Academic pediatrics</title><addtitle>Acad Pediatr</addtitle><description>Abstract Objective Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children. Methods Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis. Results Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system. Conclusions Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.</description><subject>Adult</subject><subject>autism spectrum disorder</subject><subject>Child</subject><subject>Child Development Disorders, Pervasive - diagnosis</subject><subject>Child, Preschool</subject><subject>Delayed Diagnosis</subject><subject>Female</subject><subject>Health Knowledge, Attitudes, Practice</subject><subject>Health Services Accessibility</subject><subject>Hispanic Americans</subject><subject>Humans</subject><subject>Income</subject><subject>Male</subject><subject>Neonatal and Perinatal Medicine</subject><subject>Parents</subject><subject>Pediatrics</subject><subject>Physician-Patient Relations</subject><subject>Qualitative Research</subject><subject>Social Stigma</subject><subject>Young Adult</subject><issn>1876-2859</issn><issn>1876-2867</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2014</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kUtr3DAUhUVoaR7tH8iieNduxtHDlmQIgTSPJjCQQLO_yJrrVBOPNJHsgfz7yEwytF10JSGdc3T0XUKOGS0ZZfJkWRpr1iWnTJSMl5RWe-SAaSVnXEv1Ybevm31ymNKSUim0lp_IPq-UVEqLA3I6N4Pzobg3Ef2QvhX3GNMa7eA2mIrgix8mRpfPiiEU5-Pg0qq4dObRh-TSZ_KxM33CL2_rEXm4vnq4uJnN737eXpzPZ7ZmdJhZbbGmjW65rBXXtpWdqgxV-bSpqK2Ylm2NuX4tRMsQJeW0MV2nK6aUpeKInG1j12O7woXNRaPpYR3dysQXCMbB3zfe_YbHsIFq-rEUOeD7W0AMzyOmAVYuWex74zGMCVjNGi2kok2W8q3UxpBSxG73DKMwUYclTNRhog6MQ66dTV__LLizvGPOgtOtADOlTcYJyTr0FhcuZtawCO7_-Wf_2G3vvLOmf8IXTMswRp_5A4OUDfBrmvs0diaym2esrznyp-c</recordid><startdate>20140501</startdate><enddate>20140501</enddate><creator>Zuckerman, Katharine E., MD, MPH</creator><creator>Sinche, Brianna, MPH</creator><creator>Mejia, Angie, MA, CAS</creator><creator>Cobian, Martiza, BA</creator><creator>Becker, Thomas, MD, PhD</creator><creator>Nicolaidis, Christina, MD, MPH</creator><general>Elsevier Inc</general><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>20140501</creationdate><title>Latino Parents' Perspectives on Barriers to Autism Diagnosis</title><author>Zuckerman, Katharine E., MD, MPH ; Sinche, Brianna, MPH ; Mejia, Angie, MA, CAS ; Cobian, Martiza, BA ; Becker, Thomas, MD, PhD ; Nicolaidis, Christina, MD, MPH</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c510t-c8ce5098b265728cb6f74a07ce5940c4186b5e004533b1ee60209aff84177c03</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2014</creationdate><topic>Adult</topic><topic>autism spectrum disorder</topic><topic>Child</topic><topic>Child Development Disorders, Pervasive - diagnosis</topic><topic>Child, Preschool</topic><topic>Delayed Diagnosis</topic><topic>Female</topic><topic>Health Knowledge, Attitudes, Practice</topic><topic>Health Services Accessibility</topic><topic>Hispanic Americans</topic><topic>Humans</topic><topic>Income</topic><topic>Male</topic><topic>Neonatal and Perinatal Medicine</topic><topic>Parents</topic><topic>Pediatrics</topic><topic>Physician-Patient Relations</topic><topic>Qualitative Research</topic><topic>Social Stigma</topic><topic>Young Adult</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Zuckerman, Katharine E., MD, MPH</creatorcontrib><creatorcontrib>Sinche, Brianna, MPH</creatorcontrib><creatorcontrib>Mejia, Angie, MA, CAS</creatorcontrib><creatorcontrib>Cobian, Martiza, BA</creatorcontrib><creatorcontrib>Becker, Thomas, MD, PhD</creatorcontrib><creatorcontrib>Nicolaidis, Christina, MD, MPH</creatorcontrib><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Academic pediatrics</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Zuckerman, Katharine E., MD, MPH</au><au>Sinche, Brianna, MPH</au><au>Mejia, Angie, MA, CAS</au><au>Cobian, Martiza, BA</au><au>Becker, Thomas, MD, PhD</au><au>Nicolaidis, Christina, MD, MPH</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Latino Parents' Perspectives on Barriers to Autism Diagnosis</atitle><jtitle>Academic pediatrics</jtitle><addtitle>Acad Pediatr</addtitle><date>2014-05-01</date><risdate>2014</risdate><volume>14</volume><issue>3</issue><spage>301</spage><epage>308</epage><pages>301-308</pages><issn>1876-2859</issn><eissn>1876-2867</eissn><abstract>Abstract Objective Latino children are diagnosed with autism spectrum disorders (ASDs) at older ages and at the point of more severe symptoms. We sought to qualitatively describe community, family, and health care system barriers to ASD diagnosis in Latino children. Methods Five focus groups and 4 qualitative interviews were conducted with 33 parents of Latino children previously diagnosed with an ASD. Participants described Latino community perceptions of autism and barriers they experienced during the diagnostic process. Sessions were audiorecorded and transcribed. Transcripts were coded by 2 researchers, and data were analyzed using thematic analysis. Results Parents reported low levels of ASD information and high levels of mental health and disability stigma in the Latino community. Parents had poor access to care as a result of poverty, limited English proficiency, and lack of empowerment to take advantage of services. Providers sometimes dismissed parents' concerns. The ASD diagnostic process itself was slow, inconvenient, confusing, and uncomfortable for the child. These factors led many parents to normalize their child's early behaviors, deny that a problem existed, and lose trust in the medical system. Conclusions Additional educational outreach to Latino families, destigmatization of ASD, streamlining the ASD diagnostic process, and providing additional support to Latino parents of at-risk children may decrease delays in ASD diagnosis among Latino children.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>24767783</pmid><doi>10.1016/j.acap.2013.12.004</doi><tpages>8</tpages><oa>free_for_read</oa></addata></record>
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source MEDLINE; Elsevier ScienceDirect Journals
subjects Adult
autism spectrum disorder
Child
Child Development Disorders, Pervasive - diagnosis
Child, Preschool
Delayed Diagnosis
Female
Health Knowledge, Attitudes, Practice
Health Services Accessibility
Hispanic Americans
Humans
Income
Male
Neonatal and Perinatal Medicine
Parents
Pediatrics
Physician-Patient Relations
Qualitative Research
Social Stigma
Young Adult
title Latino Parents' Perspectives on Barriers to Autism Diagnosis
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