Date Presented 04/04/19
Little is known about how families from different racial and ethnic backgrounds report family impact associated with caregiving children with autism. We examined family impact variables among caregivers from different racial and ethnic backgrounds from the National Survey of Children with Special Healthcare Needs (n=5,178) and found significant differences on financial spending and time spent caregiving. These differences may impact providers' work to engage in culturally relevant therapy.
Primary Author and Speaker: Teal Benevides
Contributing Authors: Jiwon Lee, Jessica Franks, Nonye Nwosu
PURPOSE: Raising a child with autism spectrum disorder (ASD) has a substantial influence on family caregivers’ emotional and physical health and well-being. Recent meta-analysis reported that parents of children with ASD experienced significantly higher levels of parenting stress compared to parents of children with other developmental disabilities and parents of children without developmental disabilities (Hayes & Watson, 2013). Existing literature rarely addresses culture and the possible role that race and/or ethnicity (as a proxy for culture) might contribute towards family impact in families of children with ASD. Additionally, little is known about how families from different racial/ethnic backgrounds report family impact beyond individual stressors associated with caregiving in this population. The specific research question the study answers is: What differences in family impact exist among a racially/ethnically diverse population-based sample of caregivers of children with ASD?
METHODS: Using publicly-available data from the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN; CDC, 2013), this retrospective, cross-sectional study examined family impact among caregivers (N= 5,178) of children with ASD. Family impact was defined as financial impact, time spent caregiving, and work impact variables, and was 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. Multivariate logistic regression in Stata 14.1 was used to analyze the association of race and ethnicity with family impact variables, while controlling for child and family covariates.
RESULTS: In logistic regression models adjusted for characteristics of the child and family, English-speaking Hispanic caregivers were 2.4 times more likely (95% CI: 1.38-4.31) to report spending 12+ hours caring for their child with ASD as compared to white, non-Hispanic caregivers. Examination of financial impact revealed that white non-Hispanic caregivers were significantly more likely to spend $500 or more on their child’s care than black (OR=1.8, 95%CI: 1.18-2.80), Spanish-speaking Hispanic caregivers (OR=3.60, CI: 1.69-7.64), and caregivers of other racial/ethnic backgrounds (OR=2.32, CI: 1.55-3.49). No significant differences were observed in job impact variables between race/ethnicity groups.
CONCLUSION: The unique contribution of this study is that financial and time caregiving impact differ between racial/ethnic groups within a U.S. population-based sample of respondents who care for children with ASD. Further investigation into caregiver preferences for spending on services and supports between caregivers of different racial and ethnic backgrounds can clarify how and why caregivers make decisions about care. Further studies are warranted to understand whether caregivers who reported spending greater than 12 hours a week were compelled to engage in this level of caregiving due to lack of finances or lack of other support, or whether the caregiver chose to engage in caregiving based on preference, cultural expectations, or family norms.
IMPACT: This study adds evidence that financial and time caregiving impact differs between racial/ethnic groups within a U.S. population-based sample of respondents who care for children with ASD. Practitioners should be aware of preferred differences in time and financial spending and support caregivers in providing care in the most meaningful way for that family.
References
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43(3), 629-642. doi:10.1007/s10803-012-1604-y
Centers for Disease Control and Prevention, National Center for Health Statistics & State and Local Area Integrated Telephone Survey. (2013). National survey of children with special health care needs. Retrieved from http://www.cdc.gov/nchs/slaits/cshcn.htm
