Examining Differences in Family Impact Among a Racially and Ethnically Diverse Population of Parents of Children with Autism Spectrum Disorder

Background: Raising a child with autism spectrum disorder (ASD) has a substantial influence on family caregivers’ emotional and physical health and wellbeing. A recent meta-analysis reported that parents of children with ASD experienced significantly higher levels of parenting stress compared to parents of children with other and without developmental disabilities. Existing literature rarely addresses culture and the possible role that race and/or ethnicity (as a proxy for culture) might contribute towards family impact. Little is known about how families from different racial and ethnic backgrounds report family impact beyond individual stressors associated with caregiving.

Objectives: The purpose of this study was to examine a following research question: What differences in family impact exist among a racially and ethnically diverse population-based sample of caregivers of children with ASD? Additionally, we explored differences between English- and Spanish-speaking Hispanics.

Methods: Using publicly-available data from the 2005-2006 and 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN; CDC, 2005, 2009), this retrospective, cross-sectional study examined family impact among caregivers (N= 5,178) of children with ASD. Family impact was defined by the financial impact, time spent caregiving, and work impact variables, and evaluated in five racial and ethnic groups: 1) white, non-Hispanic; 2) any race, English-speaking Hispanic; 3) any race, Spanish-speaking Hispanic; 4) black, non-Hispanic; and 5) 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 2.0 times more likely (95% CI: 1.14-3.55) to report spending 11+ hours caring for their child as compared to white, non-Hispanic caregivers. Examination of time spent caregiving 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 racial/ethnic groups.

Conclusions: The unique contribution of this study is that financial and time spent caregiving impacts differed between racial/ethnic groups within this U.S. population-based sample. 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. Additional research is needed to determine whether caregivers who reported spending greater than 11 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. Racial and ethnic differences exist in providing and spending more for direct care, but they do not necessarily represent disparities. With other demographic variables controlled for, these findings suggest the need to support caregivers in the most meaningful way in their preferred methods of providing care.