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1.
J Autism Dev Disord ; 2024 Jan 17.
Article in English | MEDLINE | ID: mdl-38231382

ABSTRACT

PURPOSE: To understand the ways in which autistic Latinx children experience disparities in diagnosis, healthcare, and receipt of specialty services. METHODS: 417 individuals who identified as Latinx caregivers of autistic children who were members of the same integrated healthcare system in Northern California were surveyed. Responses were analyzed using the child's insurance coverage (Government or Commercial) and caregiver's primary language (Spanish or English). RESULTS: Compared to the commercially-insured, government-insured participants accessed several services at a higher rate and were less likely to cite the high cost of co-pays as a barrier. CONCLUSION: There were no significant differences in service access by language status, but Spanish speakers were more likely to cite health literacy as a barrier to receiving care.

2.
Autism ; 25(3): 731-743, 2021 04.
Article in English | MEDLINE | ID: mdl-32551940

ABSTRACT

LAY ABSTRACT: The transition from pediatric to adult care is a critical inflection point for the long-term health of youth with autism spectrum disorders and other special health care needs. However, for many patients, their caregivers, and providers, the transition lacks coordination. This survey study demonstrates that pediatric and adult providers struggle to implement many components of transition best practices for youth with autism and other chronic conditions, highlighting the urgent need for enhanced medical coordination and additional transition training and resources.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Transition to Adult Care , Adolescent , Adult , Autism Spectrum Disorder/therapy , Child , Delivery of Health Care , Humans , Surveys and Questionnaires
3.
Public Health Genomics ; 23(3-4): 122-132, 2020.
Article in English | MEDLINE | ID: mdl-32698180

ABSTRACT

INTRODUCTION: Biospecimens are tools that have the potential to improve early identification and treatment for autism spectrum disorders (ASD) and bipolar disorders (BPD). Unfortunately, most biobanks lack racial/ethnic diversity. One challenge to including a diverse sample of youth is recruiting and engaging families. OBJECTIVE: We sought to better understand facilitators and barriers to participation in biospecimen research among a diverse group of parents of youth with ASD and BPD. METHODS: The current study involved 3 Mental Health Research Network sites. At each site, parents participated in an interview that explored attitudes and beliefs about genetic research. Interviews were audio-recorded, and audio files were transcribed and coded using content analysis. RESULTS: A total of 58 interviews were conducted. Four challenges emerged: (1) contacting and engaging potential research participants, (2) motivating potential participants to read recruitment and consent materials, (3) motivating participation in research, in general, and (4) motivating participation in research involving biospecimen donation, specifically. CONCLUSIONS: Participants were eager to participate as long as the research process involved trust, clarity, and flexibility. Future research involving youth with mental health conditions would benefit from implementing multimodal strategies for recruitment and data collection and sharing knowledge gained by the research with study participants.


Subject(s)
Autism Spectrum Disorder , Bipolar Disorder , Genetic Research/ethics , Patient Participation , Patient Selection/ethics , Autism Spectrum Disorder/genetics , Autism Spectrum Disorder/psychology , Biological Specimen Banks , Bipolar Disorder/genetics , Bipolar Disorder/psychology , Child , Female , Humans , Male , Patient Participation/methods , Patient Participation/psychology
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