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 autism related services. Latino children with ASD have also been found to have lower access, utilization and quality of health care than white children with ASD. These findings are exacerbated among Latino children with ASD whose parents are immigrants. 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 caring for a child with ASD.
Objectives:
The intervention included 8 home visits conducted by the promotoras who were themselves Spanish-speaking parents of children with ASD. Promotoras were trained in the program’s content. We previously presented the quantitative findings of the pilot study and found significant differences between pre and post-tests in family empowerment and caregiver-efficacy. The focus of the present paper is to examine qualitative data to understand the mechanisms by which caregiver-efficacy is improved. Our research questions are: 1) How do the promotoras foster greater caregiver-efficacy in their work with the parents; and 2) What aspects of the program and content are most valuable to parents?
Methods:
We analyzed qualitative responses from two focus groups held after participants completed the program. There were 9 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 recode transcripts independently. When saturation was achieved, the authors reviewed the coded transcripts and reached agreement.
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 child’s progress, “I think they gave us hope for 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.”
Conclusions:
To address racial/ethnic disparities among children with autism in receiving treatments and services, culturally-based interventions that empower parents are needed. We present data from a pilot study that delivers education to Spanish-speaking immigrant parents in a way that helps them feel empowered and more efficacious in knowing their child’s needs and rights and how to advocate for services.
See more of: Services
See more of: Prevalence, Risk factors & Intervention