TY - JOUR
T1 - Conceptualization of Autism in the Latino Community and its Relationship with Early Diagnosis
AU - Zuckerman, Katharine E.
AU - Sinche, Brianna
AU - Cobian, Martiza
AU - Cervantes, Marlene
AU - Mejia, Angie P
AU - Becker, Thomas
AU - Nicolaidis, Christina
N1 - Publisher Copyright:
Copyright © 2014 Lippincott Williams & Wilkins.
PY - 2014/10/10
Y1 - 2014/10/10
N2 - Objective: Early identification of autism spectrum disorders (ASD) has been linked to improved long-term developmental outcomes. However, Latino children are diagnosed later than white non-Latino children. We aimed to qualitatively assess the understanding and conceptualization of ASD in the Latino community to understand potential community barriers to early diagnosis.Methods: We conducted 5 focus groups and 4 qualitative interviews with 30 parents of typically developing Latino children in Oregon. Participants were asked structured questions concerning video vignettes that follow a Latina mother from the time she begins to worry about her 3-year-old son's behaviors to the time he receives an ASD diagnosis. Focus groups and interviews were audio-recorded, transcribed, and independently coded. Coded data were analyzed using thematic analysis.Results: Many Latino families in the study had not heard of ASD or had little information about it. Families sometimes assumed that ASD red flags were normal or could be attributed to family dysfunction. Families also had concerns about provider communication and access to language services. Having a child with a developmental delay was associated with embarrassment, rejection, and family burden, making it difficult for parents to raise developmental concerns with providers.Conclusions: Pediatric providers should not assume that Latino parents have heard of ASD or know its symptoms. Providers should be aware that parents may be reluctant to mention concerns because of cultural factors. The health care system needs to improve resources for Latino parents with limited English proficiency. Policies should encourage the use of developmental screening in primary care.
AB - Objective: Early identification of autism spectrum disorders (ASD) has been linked to improved long-term developmental outcomes. However, Latino children are diagnosed later than white non-Latino children. We aimed to qualitatively assess the understanding and conceptualization of ASD in the Latino community to understand potential community barriers to early diagnosis.Methods: We conducted 5 focus groups and 4 qualitative interviews with 30 parents of typically developing Latino children in Oregon. Participants were asked structured questions concerning video vignettes that follow a Latina mother from the time she begins to worry about her 3-year-old son's behaviors to the time he receives an ASD diagnosis. Focus groups and interviews were audio-recorded, transcribed, and independently coded. Coded data were analyzed using thematic analysis.Results: Many Latino families in the study had not heard of ASD or had little information about it. Families sometimes assumed that ASD red flags were normal or could be attributed to family dysfunction. Families also had concerns about provider communication and access to language services. Having a child with a developmental delay was associated with embarrassment, rejection, and family burden, making it difficult for parents to raise developmental concerns with providers.Conclusions: Pediatric providers should not assume that Latino parents have heard of ASD or know its symptoms. Providers should be aware that parents may be reluctant to mention concerns because of cultural factors. The health care system needs to improve resources for Latino parents with limited English proficiency. Policies should encourage the use of developmental screening in primary care.
KW - Autism spectrum disorder
KW - Delayed diagnosis
KW - Health services accessibility
KW - Hispanic Americans
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U2 - 10.1097/dbp.0000000000000091
DO - 10.1097/dbp.0000000000000091
M3 - Article
C2 - 25186120
AN - SCOPUS:84916640917
SN - 0196-206X
VL - 35
SP - 522
EP - 533
JO - Journal of Developmental and Behavioral Pediatrics
JF - Journal of Developmental and Behavioral Pediatrics
IS - 8
ER -