Pilot Project, Year 4
Parents Taking Action to Improve Autism Services Access for Navajo Families in Northern Arizona: Intervention Adaptation and Pilot Trial
Autism is a complex, neurodevelopmental disability that affects many U.S. children. Autism often necessitates the use of many services to optimize health.
Profound racial and ethnic disparities exist in access to autism services and have been established for children who are Latinx, African American or Black, and American Indian or Alaska Native (AI/AN). Coconino County has an estimated 39,478 (28.5%) individuals who are AI/AN including 32,472 who are Navajo.
Little is known, however, about Navajo parent/guardian experiences raising children with autism and service access barriers. Moreover, no intervention to reduce health disparities has targeted Navajo families of children with autism. A critical need, therefore, exists to generate new knowledge on Navajo parent/guardian perceptions of autism that can inform an intervention to improve service access.
The proposed mixed-methods study will aim to:
- Conduct focus groups and interviews with Navajo parents/guardians of children with autism in year 1 to generate new knowledge on Navajo parent/guardian experiences raising children with autism.
- Adapt Parents Taking Action, an evidence-based intervention, for Navajo families of children with autism in year 1.
- Conduct a pilot trial of the adapted intervention with 10 Navajo parents/guardians of children with autism ages 2-12 years to determine its feasibility, acceptability, and culturally appropriate outcomes measurement in year.
This research will help to advance health equity for Navajo families of children with autism, and the adapted intervention can potentially be spread to more Navajo families and other tribal and/or rural communities.
Funding: The study is funded by NIMHD/NIH U54MD012388, and by a 2020 Organization for Autism Research Applied Research Competition grant.
About the investigators
Olivia Lindly, PhD
Publications Accordion Closed
Lindly, O., Henderson, D. E., Vining, C., Running Bear, C., Nozadi, S.S. & Bia, S. (under review). “Know your children, who they are, their weakness, and their strongest point”: A qualitative study on Diné parent experiences accessing autism services for their children.
Lindly, O. J., Running Bear, C. L., Henderson, D. E., Lopez, K., Nozadi, S. S., Vining, C., Bia, S., Hill, E., & Leaf, A. (under review). Adaptation of the Parents Taking Action program for Diné families of children with autism.
Lopez, K., Lindly, O., Running Bear, C., Xu, Y., & Dueñas, A. (in preparation). Community partnerships and autism intervention studies with underserved children throughout COVID-19.
Conferences Accordion Closed
Running Bear, C., Lindly, O., & Henderson, D. (2023, March). Diné Parents Taking Action: Diné parents of children with autism. Poster will be presented at the Council for Exceptional Children annual conference, Louisville, KY.
Lopez, K., Lindly, O., Running Bear, C., Xu, Y., & Dueñas, A. (2023, January). Community partnerships and Autism intervention studies with underserved children throughout COVID-19. Presented at the 27th Annual Conference of the Society for Social Work and Research, Phoenix, AZ.
Running Bear, C., Lindly, O., & Henderson, D. (2022, October). Diné Parents Taking Action pilot project: Initial findings. Poster presented at the National Indian Education Association 53rd Annual Convention and Trade Show, Oklahoma City, OK.
Lindly, O., Running Bear, C., & Henderson, D. (2022, June). Lessons learned and initial findings from the Diné Parents Taking Action pilot project. Presented at the Institute for Human Development, Northern Arizona University, Evidence for Success Hybrid Disability conference, Phoenix, AZ.
Lindly, O., Running Bear, C., & Henderson, D. (2022, March). Parents Taking Action to improve autism services access for Navajo families in Northern Arizona: Preliminary qualitative findings. Poster presented at the RCMI Consortium National Conference, Virtual.
Lindly, O., Running Bear, C., & Henderson, D. (2021, December). Parents Taking Action to improve autism services access for Navajo families in Northern Arizona. Poster presented at the Southwest Health Equity Research Collaborative, Research Poster Presentation and Reception, Flagstaff, AZ.