Parent Health Beliefs, Social Determinants of Health, and Child Health Services Utilization Among US School-age Children With Autism

Abstract

Objective Substantial variation exists in ASD care by race, ethnicity, and socioeconomic status; however, the role of parent health beliefs in this variation is poorly understood. Study goals were to (1) examine variation in parent beliefs about ASD prognosis and treatment according to social determinants of health (SDH) and (2) assess whether this variation was associated with variable health services utilization, among 1420 children with special health care needs (CSHCN) having autism spectrum disorder (ASD). Methods We used linked data from the 2011 Survey of Pathways to Diagnosis and Treatment and the 2009/10 National Survey of Children with Special Health Care Needs. Bivariate and multivariate analyses assessed variation in parent beliefs according to race/ethnicity, household income, and parent educational attainment. Further analyses assessed whether variation in beliefs was associated with use of psychotropic medication, traditional therapy, or complementary/alternative therapy for ASD. Results Parents of lower educational attainment or who had lower income were more likely to think that their child’s condition was a mystery. Near-poor families were less likely to feel they had the power to change the child’s condition. Parents of minority children were more likely than white children to view their child’s condition as temporary. However, these differences in beliefs only had modest associations with variation in use of the health services analyzed. Conclusions Some SDH-related variation exists in health beliefs among parents of children with ASD, but these differences may not be the main factors accounting for ASD health care disparities.

Timeliness of Autism Spectrum Disorder Diagnosis and Use of Services Among U.S. Elementary School–Aged Children

“…Pathways did not collect information about what therapy services parents were offered, why parents chose or rejected any particular services, or whether current services were specifically for ASD versus some other developmental/behavioral problem. Parents’ beliefs about ASD may play a role in subsequent treatment decisions (35, 42); research exploring parents’ beliefs regarding treatment or longitudinal studies following families’ treatment decisions may elucidate these findings. Future research should explore why children were using certain therapies at high rates (e.g., psychotropic medications which are not generally indicated for ASD).…”

“…Child and family factors previously associated with age of ASD diagnosis and ASD-related health services utilization served as covariates (34, 35). Factors included child age, gender, race/ethnicity, health insurance type, functional limitations status, household income relative to federal poverty level (FPL), parent education, census region, and family structure.…”

“…We studied four measures of ASD-related health services use; each has previously varied among children with ASD (35, 38, 39) and/or related conditions (40). Psychotropic medication use was identified if the child was taking any psychotropic medication “to meet his/her developmental needs” currently on a regular basis, including stimulants, antidepressants, anxiolytics, mood stabilizers, anti-seizure medications, antipsychotics, and sleep medications.…”

The effect of Medicaid waivers on ameliorating racial/ethnic disparities among children with autism

“…While these disparities have been well documented, much less research has addressed why these disparities exist and how to ameliorate them. One line of thinking suggests that disparities exist at least in part because of cultural differences in parental beliefs and health‐seeking behavior interacting with a system of care insensitive to these differences . Fewer studies have examined the extent to which system‐level efforts to improve access to care ameliorate these disparities for children with ASD, despite evidence of the impact of such interventions and policies in other areas of health care .…”

Parents’ Use of Complementary Health Approaches for Young Children with Autism Spectrum Disorder

“…Parental use of CHA for children with ASD in the United States and Europe ranges from 17.3% (Zuckerman, Lindly, Sinche, & Nicolaidis, 2015) to 47.0% (Salomone, Charman, McConachie, & Warreyn, 2015). In addition, CHA use is more common in children with ASD compared to other children, even those with other developmental disabilities (Akins, Krakowiak, Angkustsiri, Hertz-Picciotto, & Hansen, 2014; Valicenti-McDermott et al, 2013; H.…”