Recent research has found disparities in health care and specialty services for Latino children with ASD compared to White children, particularly among those whose parents are Spanish speaking. Contributing to these disparities are language barriers, lower socio-economic status, and limited access to information about disabilities and autism. Furthermore, Latinos are rarely included in autism intervention studies. An empowerment approach to addressing educational and informational needs of Latino parents is essential in order to better support their children with ASD.
Objectives:
The purpose of our pilot study was to develop and assess a psycho-educational intervention which aims to help Latino parents learn about child development, autism and its symptoms, advocating for services, how to share information with family members, and how reduce stress and depression among parental caregivers.
Methods:
This pilot intervention used Promotoras de Salud, which are lay community members who are bilingual, bicultural and from the same community as the participants and are trained in specific interventions. Furthermore, our promotoras were also mothers of children with an ASD. A curriculum was developed with the content listed in the objectives, and a one group pre and post-test design was used. Working with a community based organization, Wisconsin FACETS, 20 Spanish speaking mothers of children with an ASD between the ages of 2 and 8 years old were enrolled in the study. Promotoras carried out 8 home visits with each participant using the developed curriculum. Promotoras also administered the pre and post-tests, which included the following measures: Family Outcome Survey (Bailey et al., 2008); Caregiver Burden, Satisfaction and Efficacy (Heller, Miller, & Hseih, 1999), and the Center for Epidemiology Studies Depression Scale (CESD). Focus groups were held with participants after completing the program.
Results:
Pre and Post-test data showed significant improvements in all five of the Family Outcome subscales: Understanding Child’s Strengths and Needs (Pre μ=9.4, SD=4.1; post μ=14.3, SD=1.3; P<.001), Knowing your Rights and Advocating for Child (Pre μ=10.1, SD=6.4; post μ=18.1, SD=2.4; P<.001), Helping your Child Develop and Learn (Pre μ=10.3, SD=3.7; post μ=14.1, SD=2.3; P<.001), Having Support Systems (Pre μ=11.2, SD=7.0; post μ=16.5, SD=3.3; P<.05), and Accessing the Community (Pre μ=14.4, SD=8.0; post μ=21.5, SD=2.3; P<.05). We also found significant improvement in caregiver efficacy, but not in caregiver burden or satisfaction. Qualitative data shows that mothers were very satisfied with the program and valued having another parent of a child with ASD deliver the content material.
Conclusions:
Interventions are needed for Latino families of children with ASD to address the disparities in services received by their children. This pilot study used an empowerment approach to improve knowledge and skills about how to better help their children. Results suggest that this may be a promising psycho-educational intervention for Spanish speaking Latino families. A second module is currently being developed to increase parental skills in using evidenced based applied behavior analytic strategies with their child with ASD. Plans are underway to conduct a randomized trial for the first module.