Dataset Information

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

ABSTRACT: 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.

SUBMITTER: Stahmer AC

PROVIDER: S-EPMC6936957 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Publications

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Stahmer Aubyn C AC Vejnoska Sarah S Iadarola Suzannah S Straiton Diondra D Segovia Francisco Reinosa FR Luelmo Paul P Morgan Elizabeth H EH Lee Hyon Soo HS Javed Asim A Bronstein Briana B Hochheimer Samantha S Cho EunMi E Aranbarri Aritz A Mandell David D Hassrick Elizabeth McGhee EM Smith Tristram T Kasari Connie C

Journal of racial and ethnic health disparities 20190311 4

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, explanatio ...[more]

PMID: 30859514

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Project description:This study explores the emergence and productivity of word order usage in Mandarin-speaking typically-developing (TD) children and children with autism spectrum disorder (ASD), and examines how this emergence relates to frequency of use in caregiver input. Forty-two caregiver-child dyads participated in video-recorded 30-min semi-structured play sessions. Eleven children with ASD were matched with 10 20-month-old TD children and another 11 children with ASD were matched with 10 26-month-old TD children, on expressive language. We report four major findings: (1) Preschool Mandarin-speaking children with ASD produced word order structures with pervasive ellipsis at similar rates to language-matched TD children, but also displayed differences from TD children in their usage of SVt and VtO frames; (2) Grammatical productivity was observed in both TD children and children with ASD; moreover, children with ASD with higher expressive language produced less stereotyped language; (3) Both TD children and children with ASD heard a range of word orders in their caregivers' input, with TD children's input greater in amount and complexity; however, caregivers of both groups also showed no age/language-related changes in word order usage; (4) Few word-order-specific correlations emerged between caregivers and their children; however, strong correlations were observed for mean length of utterances (MLU) for both groups: Caregivers who produced longer/more complex utterances had children who did the same. Taken together, it seems that despite their pragmatic deficits, the early grammatical knowledge of word order in Mandarin-exposed children with ASD is well preserved and in general follows the typical developmental pattern. Moreover, caregiver input is broadly rather than finely tuned to the linguistic development of TD children and children with ASD, and plays a more important role in children's general syntactic development than in specific word order acquisition. Thus, early word order usage in preschool Mandarin-speaking TD children and children with ASD may be influenced by both caregiver input and child abilities.

Project description:AimThe aim of the study was to identify the most prioritized strategies in improving access to primary care services (PCS) for homeless immigrants.BackgroundThe issue of improving access to PCS for homeless immigrants is a complex and multifaceted one, and yet there is limited research on the strategies aimed at improving these services. Hence, the need for more studies that directly engage homeless immigrants and service providers in understanding their barriers to accessing PCS and their preferences for improving access to these services.MethodsThe study used a two round Delphi method to elicit the views of stakeholders. The Delphi process utilized a web-based questionnaire. The stakeholders included healthcare providers and voluntary sector providers. The first round had a total of 58 items belonging to 14 categories. The second round comprised a total of 25 items belonging to 12 categories which were preselected based on participants' ranking of their importance in the first round. Participants were required to rank the relative importance of all the items on a 5-point Likert scale. Data were analysed using the STATA-15 software package.FindingsA total of 12 stakeholders participated in both rounds of the Delphi survey. The top three strategies encompassed fighting against discrimination and prejudice, improving and promoting mental health services, and empowering homeless immigrants. These evidence-based strategies hold the potential to support the implementation of healthcare interventions aimed at improving access to PCS and healthcare outcomes for homeless immigrants. However, it is crucial to conduct further research that includes homeless immigrants in the Delphi study to gain insights into the strategies that are most important to them in enhancing access to PCS, as they are the primary target users. Such research will contribute to the development of comprehensive and effective interventions tailored to the specific needs of homeless.

Dataset Information

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Publications

Caregiver Voices: Cross-Cultural Input on Improving Access to Autism Services.

Similar Datasets

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