Understanding the Family Impact of Autism Spectrum Disorder in a Racially and Ethnically Diverse Sample: Findings from the National Survey of Children with Special Health Care Needs
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Objectives Caregivers of children with autism spectrum disorder (ASD) experience stress at greater rates than caregivers of other children with developmental conditions. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving. This paper aims to examine differences in family impact variables among caregivers of ASD children from different racial/ethnic backgrounds. Methods Using data from the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs, this retrospective, cross-sectional study examined family impact among caregivers of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables and evaluated in five racial/ethnicity groups: white, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; black, non-Hispanic; and other race, non-Hispanic respondents (n = 5115). Multivariate logistic regression was used to analyze the association of race and ethnicity with family impact variables while controlling for child and family covariates. Results Significant differences were found between race/ethnicity groups of caregivers on financial spending of more than $500 per year on care and providing more than 11 h a week on direct child care. No significant differences were observed in job impact variables between race/ethnicity groups. Conclusions for Practice Racial/ethnic differences exist in providing and spending more on direct care, but they do not necessarily represent disparities. More research is needed to fully understand if family impact is affected by cultural differences in care provided for children with ASD.
KeywordsAutism spectrum disorder Family caregiver Racial/ethnic health disparities
All authors contributed to the supervision and design of the study equally. TB developed methodology, conducted and interpreted analyses, and contributed to the writing of the article. JL, NN, and JLF conducted the literature review, participated in interpretation of results and implications, and contributed to the writing of the article.
Compliance with Ethical Standards
This study was deemed exempt from the first author’s institutional review board, and all research for this manuscript was conducted in accord with prevailing ethical principles.
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