Maternal and Child Health Research Program

Advancing Applied MCH Research

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(SDAS) Racial/Ethnic Disparities in Family Burden & Health Care of Children with Autism

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Project Number: R40 MC 19927
Grantee: Brandeis University
Department/Center: Lurie Institute
Project Date: 9/01/2010

Final Report

(SDAS) Racial/Ethnic Disparities in Family Burden & Health Care of Children with Autism Final Report (PDF) Exit Disclaimer

Principal Investigator

Susan Parish, Ph.D.
Director, Lurie Institute
Heller School 415 South Street MS 035
Waltham, MA  02454-9110
Phone: (919)962-6434
Email: slp@brandeis.edu

Age

  • Infancy (0-12 months)
  • Toddlerhood (1-2 years)
  • Early Childhood (3-5 years)
  • Middle Childhood (6-11 years)
  • Adolescence (12-18 years)

Race/Ethnicity

  • African American
  • Hispanic/Latino

Abstract

Numerous US policy objectives call for research and interventions to reduce racial/ethnic health care disparities. However, few studies have addressed this important issue for children in general, and no studies have examined the extent or correlates of racial/ethnic health care disparities for children with autism and other developmental disabilities. Although research has established that Black and Hispanic children are less likely to be diagnosed than White children, and Hispanic children are diagnosed at a significantly later age than their White counterparts, little other evidence exists about the extent of racial/ethnic health care disparities in this population. Therefore, this study has four aims: (1) To identify the extent and correlates of racial and ethnic disparities in health care access, health care quality and health service utilization of Black and Hispanic children with autism and other developmental disabilities; (2) To examine differences in the health care access, health care quality, and health service utilization of Hispanic children with autism and other developmental disabilities by one dimension of acculturation, parental primary language. Parents whose primary language is Spanish are less likely to be acculturated to US conceptualizations of disability and the US health service system; (3) To identify the extent and correlates of racial and ethnic family burden disparities of Black and Hispanic children with autism and other developmental disabilities; and (4) To examine differences in the family burden of Hispanic children with autism and other developmental disabilities by parental primary language. The four major outcomes include: (a) family burden, measured as absolute out-of-pocket spending, spending relative to family income, whether parents stopped or reduced work to care for the child, and parents' need for mental health services; (b) health care access, measured by insurance coverage, continuity of coverage, adequacy of coverage, having a usual care provider; (c) health care service utilization, measured by number of visits, receipt of preventive care, timely receipt of needed care, referrals to specialty care, receipt of specialty needed care; and (d) health care quality, measured as receipt of care within a medical home, parental satisfaction with care, culturally competent care, and receipt of professional care coordination. The study will specifically determine whether patterns of racial/ethnic disparities persist after controlling for socioeconomic status, severity of impairment, and health insurance status. Identifying the correlates of racial/ethnic health care disparities is imperative as a first step in developing interventions that effectively promote optimal development of vulnerable children with autism. Using existing data from the 2005-06 wave of the National Survey of Children with Special Health Care Needs, we will conduct bivariate and multivariate logistic regression analyses. Models will be estimated with appropriate weighting and variance adjustment. The results of the study will be published in four papers, presented at two scientific or policy meetings, and disseminated via at least two fact sheets.

Publications

Listed is descending order by year published.

Parish SL, Magaña S, Son E, Swaine JG. Studying racial and ethnic health care disparities among children with intellectual and developmental disabilities using the National Survey of Children with Special Health Care Needs. International Review of Research in Developmental Disabilities. 2013;45:173-204. doi:10.1016/B978-0-12-407760-7.00005-0

Magaña S, Parish SL, Rose RA, Timberlake M, Swaine JG. Racial and ethnic disparities in quality of health care among children with autism and other developmental disabilities. Intellect Dev Disabil. 2012 Aug;50(4):287-99. PubMed PMID: 22861130.

Parish S, Magaña S, Rose R, Timberlake M, Swaine JG. Health care of latino children with autism and other developmental disabilities: quality of provider interaction mediates utilization. Am J Intellect Dev Disabil. 2012 Jul;117(4):304-15.

Keywords

Autism, Special Health Care Needs, Developmental Disabilities, Access to Health Care, Health Care Utilization, Health Disparities, Cultural Competence, Mental Health & Wellbeing

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