In November, OAR’s Board of Directors authorized funding for six new applied autism research studies in 2021. These new grants, totaling $240,000, bring OAR’s total research funding to more than $4.4 million since 2002. This study is supported by a gift from the Lisa Higgins Hussman Foundation. This is the fourth of six previews to be featured in The OARacle this year.
For underserved children—especially those belonging to racial and ethnic minority groups and/or living in rural areas—disparities in access to and the quality of autism spectrum disorder (ASD) services are pronounced and persistent. The disparities stem from the intersections between sociocultural factors, like traditions and beliefs, and systems of care. Those disparities, along with lack of health care access and poor clinical encounters, often result in reduced services for autistic children and their families.
Olivia Lindly, PhD, MPH, assistant professor in the Department of Health Sciences at Northern Arizona University, will lead a research study that seeks to reduce barriers to care for Navajo parents and children. Coconino County in Northern Arizona has an estimated 39,478 American Indian residents, with Navajos comprising the largest segment. Dr. Lindly’s two-year OAR-funded study, Parents Taking Action to Improve Autism Services Access for Navajo Families in Northern Arizona, will:
- Conduct focus groups and interviews with Navajo parents/guardians of autistic children in year 1 to generate new knowledge on Navajo parent/guardian experiences raising these children including barriers to services access.
- Adapt Parents Taking Action (PTA), an evidence-based intervention, for Navajo families of autistic children in year 1.
- Conduct a pilot trial of the adapted intervention with 15 Navajo parents/guardians of autistic children ages 2 to 12 years to determine its feasibility, acceptability, and culturally appropriate measurement of outcomes in year 2.
Year 1: Focus groups: Thirty Navajo parents and/or guardians who have at least one autistic child between the ages of 2 and 12 will participate in focus groups. Each participant will receive $30 for participating. Each focus group will include six to 10 parents each along with a Navajo interpreter fluent in Diné, and two members of the research team to facilitate the groups. The goal is to find out about parental experiences raising autistic children, particularly the barriers parents have experienced in trying to access care for their autistic children and the types of home-based services and supports that would be useful to them. In addition to the information gathered through the focus groups, participants will provide sociodemographic information by filling out a questionnaire.
Year 1: Advisory group: An advisory group made up of local ASD experts, community-based ASD services providers, and Navajo parents/guardians of autistic children will provide input on adapting the PTA intervention.
Year 1: Intervention adaptation: The research team will adapt PTA, a culturally tailored, parent education intervention. Originally developed for Latinx parents with intellectually and developmentally disabled children, including autistic children, PTA relies on training parents of older autistic children to lead the lessons for parents with younger autistic children, all of whom share a common ethnicity. Results from several studies showed significantly improved child and parent outcomes, including improved child social communication, maternal confidence, and frequency in the use of evidence-based practices and number of evidence-based services received by the autistic child.
Year 2: Pilot intervention: Three to five Navajo parent leaders will deliver the adapted intervention. After training via videoconferencing, each leader will work on the intervention with two to four parents, working in participants’ homes or virtually through a series of one- to two-hour sessions delivered weekly or at other intervals that work for both the leader and the parent. Adapted intervention content may include understanding the diagnosis of ASD, identifying evidence-based treatments, learning advocacy skills, and learning evidence-based approaches to enhance social communication skills and manage behaviors. The intervention will likely include a leader’s manual with instructions on how to deliver the content, a participant manual that includes all of the content, a folder with information on local service resources for participants, and video clips about the lesson content.
In addition to analyzing data obtained from the focus groups, the team will evaluate the results of the pilot trial of the intervention. For that evaluation, each intervention leader will complete a checklist after each session and a member of the research team will also independently observe and complete the fidelity checklist for two visits. The research team will collect data from participants before the beginning of the first session, midway through the intervention, and after the intervention is completed, including demographic data, such as parent age and education, child age and sex, and an assessment of autism severity. The team will also collect measures of confidence and frequency using intervention strategies and number and type of services used at each data point. For interventions conducted in person, the team will assess parent-child interaction at the three data collection time points by videotaping parents playing with their child in order to evaluate their interactions. Quantitative and qualitative data on participant satisfaction with the intervention will be gathered midway through the intervention and at completion.
By offering Navajo parents an intervention adapted for their specific needs, this study has the potential to increase their knowledge of autism, foster greater use of evidence-based strategies for autism in the home, improve children’s social communication, and increase joint attention. In addition, the project has the potential to advance culturally informed research and practice for Navajo families and lead to recommendations for practice, policy, and future research involving Native families impacted by autism.
Providing models of care for underserved families with autistic children that are culturally appropriate, low cost, and potentially sustainable may also better equip Navajo parents with knowledge and skills that may enhance their day-to-day quality of life in relation to their child’s autism.
Sherri Alms is the freelance editor of The OARacle, a role she took on in 2007. She has been a freelance writer and editor for more than 20 years.