Examining the Efficacy of a Family Peer Advocate Model in Reducing Caregiver Stress in Black and Hispanic Caregivers of Children with Autism Spectrum Disorder

Background:  Studies show that caregivers of children with developmental disabilities, and especially those with autism spectrum disorder (ASD), experience higher levels of caregiver strain than caregivers of typically developing children. Family peer advocates (FPA; often referred to as parent advocates) have been utilized across child service delivery systems to facilitate engagement in care and minimize the challenges that caregivers face. Peer-delivered advocacy services have been found to reduce isolation, normalize distress, and de-stigmatize child and family needs. Because the majority of research to date has examined caregiver strain in a largely Caucasian sample, there is a need to examine the FPA model within a more ethnically diverse population. Black and Hispanic children are experiencing disproportionately increasing rates of ASD diagnoses and are a frequently underserved population.

Objectives:  To examine the impact of focused contact with an FPA on family stress and caregiver strain. 

Methods: Sixty-seven children of Black or Hispanic descent, between the ages of 5 and 12, were screened for this study. Thirty-nine children met research eligibility criteria for ASD using the DSM-5, the Autism Diagnostic Observation Schedule (ADOS-2) and the Autism Diagnostic Interview-Revised (ADI-R) and were included in the analysis. This study used a single-blind randomized controlled design, in which caregivers were randomized to a Family Peer Advocate (FPA) group or a community care control group (control group). Caregivers in the FPA group had phone contact with a trained FPA at least twelve times over a six-month time period. Caregivers in the control group received treatment as usual within the community. All caregivers completed the Parenting Stress Index (PSI)—Short Form and Caregiver Strain Questionnaire (CSQ), both validated in autism populations, at three time points (baseline, month 3, and month 6). 

Results:  There was a significant two-way time x group interaction on the PSI for total score (p<.001), as well as each subscale. The FPA group showed significant improvement in parental stress over time on PSI total scores and all subscales, while the control group did not significantly improve on any PSI subscale. There was also a significant two-way time x group interaction on the CSQ (p<.001), indicating that the FPA group showed significantly less caregiver strain over time as compared to  the control group. 

Conclusions:  Our results demonstrate that caregivers who were paired with an FPA over a six month time period were more likely than the caregivers in the control group to report decreased stress and strain on two separate measures. This evidence supports the efficacy of this FPA model in alleviating stress levels for Black and Hispanic families of children with ASD. Future studies should include larger samples, an active treatment comparator, and a follow-up time point to see if contact with an FPA had sustained effects on parental stress levels.