Differences in Perceived Need for Medical,Therapeutic,and Family Support Services Among Caregivers of Children With Autism Spectrum Disorder

PURPOSE: To identify differences in caregiver-reported perceived need for treatment services, including therapy services, among children with autism spectrum disorder (ASD) from five racial and ethnic groups in two cross-sectional population-based datasets.

RATIONALE: Caregivers of children with ASD from racial or ethnic minority groups experience greater difficulty than nonminority caregivers obtaining care. Identifying racial and ethnic differences in perceived need for treatment among caregivers of children with ASD will improve understanding of disparities in care seeking.

DESIGN: A cross-sectional analysis of two population-based telephone survey datasets, the 2005–2006 and 2009–2010 National Survey of Children with Special Health Care Needs datasets (Centers for Disease Control and Prevention, 2008).

PARTICIPANTS: Caregivers of children with ASD between 0 and 17 yr of age (N = 5,178; n _2005–2006= 2,123; n _2009–2010 = 3,055).

METHOD: Variables were selected from among 400 in the concatenated datasets. Six service types were included that reflect commonly used interventions among children with ASD: specialty physician care, prescription medication, specialized therapies (occupational therapy, speech therapy, physical therapy), child MH care, respite care, and family MH services. We used five categories to examine race/ethnicity: White, non-Hispanic; any race, English-speaking Hispanic; any race, Spanish-speaking Hispanic; Black, non-Hispanic; and other race, non-Hispanic. Additional covariates were selected for multivariate analyses based on Andersen’s Behavioral Model and included predisposing, enabling, and need characteristics that may have an impact on the outcome variable of interest (perceived service need).

ANALYSIS: Bivariate analyses of racial and ethnic categories and perceived need for six commonly used services used by children with ASD were conducted on concatenated survey datasets from both years. Multivariate logistic regressions within concatenated datasets were conducted to examine associations between racial and ethnic category and perceived service needs while controlling for predisposing, enabling, and child factors.

RESULTS: In adjusted multivariate analyses, both Hispanic caregivers and Black, non-Hispanic caregivers reported greater need for occupational, speech, and physical therapy than White, non-Hispanic caregivers. Compared with caregivers of White, non-Hispanic children with ASD, caregivers of Hispanic children reported less need for prescription medications. Caregivers of Black, non-Hispanic children with ASD reported less need for prescription medications and for child and family MH services than caregivers of White, non-Hispanic children. No racial or ethnic differences were found in perceived need for specialty medical care or respite care.

DISCUSSION: Caregivers of children with ASD from different racial and ethnic backgrounds differentially perceive need for different types of care. Their perceptions may in turn affect how they prioritize and seek care, independent of their child’s specific needs.

IMPACT: Practitioners who work with children with ASD, including occupational therapists, physicians, and MH providers, should consider caregiver knowledge and attitudes toward various evidence-based services that are available. Caregiver perceptions may have an impact on reported child needs and service receipt. Understanding racial and ethnic differences in caregiver perceptions is one way to inform culturally competent, evidence-based care.

References

Centers for Disease Control and Prevention, National Center for Health Statistics, State and Local Area Integrated Telephone Survey. (2008). National Survey of Children With Special Health Care Needs. Retrieved June 10, 2013, from http://www.cdc.gov/nchs/slaits/cshcn.htm