DOI: 10.3886/icpsr38525.v1
title: Reducing Barriers to Autism Care for Latino Children, Oregon, 2012-2013
title: Version 1

description: This collection includes qualitative data files from two parts of the same study that examined the barriers to autism care for Latino children in Oregon. <strong>Part 1:</strong> The research team sought to describe community, family, and health care system barriers to diagnosing autism spectrum disorders (ASD) in Latino children. Five focus groups and four individual 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. <strong>Part 2:</strong> The research team sought to assess the understanding and conceptualization of ASD in the Latino community to understand potential community barriers to early diagnosis. Five focus groups and four individual interviews were conducted with 30 parents of typically developing Latino children. 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.
description: 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. The purpose of this study was to examine barriers to care for Latino children with developmental problems.
description: Both parts of this study used a qualitative research design based on focus groups and individual interviews with parents of Latino children. <strong>Part 1:</strong> Eligible parents spoke English and/or Spanish and had a child age 2 to 10 diagnosed with autism spectrum disorders (ASD). Participants were recruited from a university autism clinic research registry, a county developmental disabilities service, and a community advocacy organization for Latino children with disabilities. Purposive sampling was used to include parents in urban and rural areas, and parents with English or Spanish as the primary language. Focus groups were conducted by a bilingual Latina facilitator and a bilingual research assistant. Groups were conducted in English or Spanish, took place at community settings in Oregon, and lasted approximately 90 minutes. Individual interviews were conducted by a bilingual research assistant at a time and place convenient for the parent. Interviews and focus groups followed the same interview guide, which was informed by literature on delayed diagnosis for other developmental and behavioral disorders. The guide had 3 domains: community perceptions and knowledge of ASD, barriers experienced before and during the ASD diagnostic process, and suggested ways to overcome barriers. The facilitator asked probing and clarifying questions or asked participants to elaborate on emerging themes. <strong>Part 2:</strong> Eligible parents self-identified as Latino, spoke English and/or Spanish, and had children between age 2 and 10 years with no major developmental or behavioral problems. Parents were recruited from 3 pediatric clinics serving significant numbers of Latinos in Northwestern Oregon. Families were purposefully selected to have adequate representation by both language and geographical area. Focus groups were led by a bilingual Latina facilitator and a bilingual research assistant, lasted 90 minutes, and included 5 to 9 parents each. Four groups took place in primary care settings, and 1 took place in a community setting. Individual interviews were conducted in person, lasted 1 hour, and were facilitated by a bilingual research assistant at a time and place convenient for the parent. Focus group and interview content were based on reactions to 4 video vignettes, performed by the same actresses in either English or Spanish. The videos, which were developed in consultation with a developmental pediatrician treating children with ASD, 2 parents of children with ASD, and 2 health care disparities researchers, depict several conversations between a fictional Latina mother and her Latina friend regarding the mother's 3-year-old son. The videos span the time from the mother's first concerns about her son's behavior to the time he receives an ASD diagnosis. Parents were asked to take the role of the mother's friend and give her advice. Vignettes were designed specifically to elicit community knowledge about ASD, awareness of resources, and community mental health stigma. All interview and focus group participants viewed the same vignettes. After each video vignette, facilitators used a semistructured interview guide to pose questions regarding the videos, such as how parents would react to the situation or how they would advise the mother. After responding to all 4 vignettes, participants were asked additional questions about barriers to mental health care in the Latino community and strategies to help Latino families during the ASD diagnostic process. Although the interview guide was the same for all groups, the facilitator asked additional questions to clarify or elaborate on emerging themes. In focus groups, the facilitator made special efforts to solicit opinions of all participants and not only from those who were the most vocal.
description: <strong>Part 1:</strong> 94 families were invited to participate; of these, 60 were reachable by mail or telephone. 30 parents (21 families) ultimately participated in 5 focus groups and 4 individual interviews. <strong>Part 2:</strong> 66 families were invited to participate; of these, 36 were reachable by mail or phone. 24 of 36 families (33 parents) eventually participated in 5 focus groups (ranging from 2 to 12 parents) and 4 individual interviews.
description: Datasets: DS0: Study-Level Files DS1: Parents of Children with Autism Spectrum Disorder Data Files DS2: Parents of Typically Developing Children Data Files
description: Parents of typically-developing Latino children and parents of Latino children with ASD.
description: face-to-face interview; mixed mode; on-site questionnaireThis study is part of Washington University in St. Louis (WUSTL) Qualitative Data Sharing (QDS) project.ICPSR has zipped 12 qualitative data files into two qualitative data packages. These packages are available for restricted download. Please refer to the ICPSR README documentation files for more information.Spanish transcripts were collected as part of this study, but they are outside the scope of using the Qualitative Data Sharing Software. To obtain access to the Spanish transcripts, please contact Dr. Katharine Zuckerman at zuckerma@ohsu.edu.