OARacle Newsletter

In November, OAR’s Board of Directors authorized funding for seven applied autism research studies in 2023. These new grants, totaling $276,212, bring OAR’s total research funding to more than $4.7 million since 2002. This article is the fourth of seven previews to be featured in The OARacle this year.    

Asian Americans constitute the fastest growing demographic group, having increased by more than 55% over the last decade and the group is projected to grow even more in coming years. The prevalence of autism among Asian American children is also rising, having grown 2.5 times faster than among non-Hispanic white children in the past 10 years. Asian immigrant families of autistic children have reported a lack of access to services, inability to understand the healthcare and special education systems, and not enough information provided.  

One of the most pronounced challenges facing Asian American families across different age groups is language and cultural barriers. Parents Taking Action: Adapting a program for Korean immigrants caring for children with autism is a 14-month OAR-funded study that will adapt an evidence-based intervention, Parents Taking Action (PTA) program. The PTA program has shown promise as an intervention with broad application to underserved populations, having been adapted for low-income Black families, Chinese immigrant caregivers, and American Indian/Alaska Native families, among others. In addition, a systematic review found that interventions targeting a specific cultural group are four times more effective than interventions provided to people who are from various cultural backgrounds, and interventions provided in a family’s native language were twice as effective as interventions provided in English. 

Led by co-principal investigators, Irang Kim, Ph.D., M.S.W., and James Lee. Ph.D., the goals of the study are to: 

• Engage key stakeholders in the adaptation, implementation, and future planning for PTA by convening a community advisory group to provide feedback on the adaptation and implementation of the PTA program. 

• Deliver the PTA program virtually to Korean immigrant caregivers of autistic children who are 8 years old or younger. 

• Assess the feasibility, acceptability, and short-term outcomes of the program for the caregiver (e.g., family functioning, parenting stress, mental health, and self-efficacy) and child (e.g., challenging behaviors). 

Dr. Kim is a bilingual (Korean and English) assistant professor at the Tulane University School of Social Work. OAR awarded her a Graduate Research Grant in 2016. This proposed study builds on the 2016 OAR-funded study, which found a need for culturally relevant early intervention services for this population.  

Dr. Lee is a bilingual (Korean and English) postdoctoral researcher in the Juniper Garden Children’s Project at the University of Kansas. His research focuses on working with underserved families of autistic children from diverse backgrounds using implementation science and cultural adaptation.  

Methodology

The researchers will use the Cultural Adaptation Checklist as a primary framework to guide the cultural adaptation, implementation, and evaluation of the PTA program. The study will consist of three phases. 

Phase 1: The researchers will work with a community advisory group to make recommendations about how to adapt and implement the program. This group comprises Korean-speaking stakeholders, including caregivers of autistic children, service providers, and advocates for autistic children nationally and internationally.  

Phase 2: The research team will adapt the PTA program for Korean immigrant caregivers, including translating the manual and modifying content to adapt to Korean cultural norms and adding material such as community resources. 

Phase 3: The research team will recruit 15 parents and three parent mentors to participate via Asian-serving community organizations across the country, as well as through social media and family support groups. To be eligible, intervention participants must:  

• Be the primary caregiver of a child 8 years old or younger with or at-risk for an autism diagnosis based on age-specific standardized autism screening instruments.  
• Speak Korean as their primary language.  

Mentors will be parents of autistic children 9 years and older. The researchers will train the mentors using a three-day online training program. 

Participants will complete online video modules (less than 30 minutes per session) weekly for 10 weeks. After completing each module, the parents will participate in online weekly discussion groups facilitated by a parent mentor. Each parent mentor will facilitate a group of four to five parents.  

Evaluation

After completing the program, participants will complete an online survey and a social validity questionnaire and take part in a one-on-one interview with one of the researchers. Parent mentors will also participate in a one-on-one interview after completing the program. These measures will enable the researchers to revise the program and to ascertain improvement in family functioning and parents’ abilities. 

Researchers will also collect basic demographic characteristics, such as comorbidity conditions, age, marital status, income, household type, and number of children.  

Practical Relevance

Culturally and linguistically diverse families of autistic children are often not included in autism research and practice. This study aims to provide a culturally responsive parenting program specifically for Korean immigrant parents of autistic children. Parent participants will learn evidence-based strategies to reduce challenging behaviors, advocacy skills, how to have conversations about autism with others, and available services in their communities.  

The program materials and resources will be available not only to participants but also to Korean-speaking caregivers of autistic children nationally and internationally. In addition, the parent mentors who are trained to facilitate discussions will be able to mentor other Korean parents.  

Finally, depending on the results of this study, the researchers plan to adapt the program for an established intervention for Korean immigrant caregivers that can be delivered in community-based organizations.  

Ultimately, the researchers hope that this study will reduce disparities in service use for culturally and linguistically diverse families, not only Korean speakers but immigrants in other populations as well.   

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.