Reducing Disparities: Increasing Efficacy of Latino Parents of Children With Autism Spectrum Disorders
Recent research has found that Latino children in the US are less likely than white children to be diagnosed with an ASD, are more likely to be diagnosed later, and once diagnosed are less likely to receive public and specialty services for children with ASD. Latino children with ASD have also been found to have lower access, utilization and quality of health care than white children with ASD. Factors that contribute to these barriers include language barriers, lower socio-economic status, and limited information and knowledge about autism and resources. We developed and pilot tested an intervention using Promotoras de Salud (community health workers) to address the educational and informational needs of Latino immigrant parents. The intervention included 8 home visits conducted by the promotoras who were themselves Spanish speaking parents of children with an ASD. Promotoras were trained in manual content. We reported previously on quantitative results of the pilot study and found significant differences between pre and post-tests using the Family Outcome Scale. The focus of the present paper is to understand the mechanisms by which change may occur by examining qualitative data. Our research questions are, 1) How do the promotoras foster change in their work with parents of a child with ASD; and 2) What aspects of the program and content are most valuable to parents?
Methods:
We analyzed qualitative responses from two participant focus groups held after completing the program. There were 14 focus group participants in total. Each of the authors reviewed the transcripts independently and identified themes in response to our 2 research questions. We then met to agree upon working definitions of themes and proceeded to code transcripts independently until saturation was reached.
Results:
Regarding RQ1, participants indicated the importance of having a role model who also has a child with ASD. One participant said, “it’s beautiful how they (promotoras) are also experiencing the same thing..how they have already had experiences they can share and have been in our shoes.” Participants also felt that the promotoras gave them hope for their children’s progress, “I think they gave us hope of how our children can advance.” For RQ2, many participants discussed the value of knowing they had the right to ask for services, “now I know I have the right to insist on services my child has the right to receive.” Participants also appreciated better understanding their child’s diagnosis, “It was very useful because the truth is, we didn’t know what the definition of autism was very well.”
Implications for Practice:
To address racial/ethnic disparities among children with autism in receiving treatments and services, culturally based interventions that empower parents are needed. Qualitative findings from our pilot study suggest that interactions between the promotora and participant helped participants feel empowered and more efficacious in knowing their child’s needs and rights and how to advocate for services. A key aspect of these interactions is the peer mentoring that takes place.