Community-Partnered Participatory Research in Autism:

Engaging Underresourced African American, Korean and Latino Communities

Hyon Soo Lee1, Felica Jones2, Fernanda A. Castellón1, Jolan Smith3, Aziza Lucas-Wright2,4, Sheryl Kataoka1, Ingrid Channa1, Connie Kasari1
1Department of Education, Human Development and Psychology, University of California, Los Angeles,2 Healthy African American Families,
3California State University, Long Beach, 4Charles R. Drew University of Medicine and Science

Background Demographic & Descriptive Data

• Engaging low-income, racial/ethnic minority and non-English speaking families in research remains a challenge in Excluding conference organizers, volunteers, performers and vendors (50+), 153 attendees came to the conference.
the field (Lord et al., 2005).
• Underresourced minorities’ low research participation may involve cultural and historical reasons. For example:
*Note: Some attendees selected multiple roles
African Americans (AAs), who have experienced history of racism and abuse in research distrust the scientific
community (Corbie-Smith et al., 2002).
Korean Americans, the majority of whom are first-generation immigrants and limited English proficient (Pew
Research Center, 2017), are excluded from most ASD studies due to a dearth of research offered in Korean.
Latinos struggle with cultural barriers such as machismo – fathers may see having a child with ASD as a “poor
reflection on them as a man” and refuse to participate in research (Zuckerman et al., 2013).
• In community-partnered participatory research (CPPR), researchers and community members form trusting
relationships through equal power sharing in all phases of research (Jones & Wells, 2007).
• CPPR conferences have shown success in engaging underresourced communities in other disciplines, such as
cancer (Jones et al., 2013), depression (Mendel et al., 2011), public health (Iyer et al., 2015), and stroke (Bharmal Results
et al., 2016), but have not been examined in ASD.
After the conference, attendees showed significant increases in scores on the following: *Note: Bonferroni adjusted p-value=.0033

Aim I know how to find out about effective It’s safe to be in an autism research I know the core deficits of autism
I can depend on community agencies that help
families of children with disabilities to give me
The goal of the study was to examine whether a CPPR conference can engage underresourced AA, Korean, and autism therapies (t(94)=5.19, p<.001). study (t(93)=5.21, p<.001). spectrum disorders (t(94)=3.04, p=.003). specific information about autism therapies
Latino communities and increase attendees’ perceived ASD knowledge and trust toward research. (t(94)=3.50, p=.001).
(M = 4.20, SD =.70)
(M = 3.94, SD =.82) (M = 3.96, SD =.89) (M = 4.09, SD = .76)
(M = 3.74, SD =.92) (M = 3.63, SD =1.06) (M = 3.78, SD = .99)
(M = 3.41, SD =.96)
Method
• This study is part of the AIR-B III Network’s larger CPPR study, which has provided free autism conferences in
the community for five consecutive years
• The current data are from the 2018 conference held in a Los Angeles African American church Pre Post Pre Post Pre Post Pre Post

The Autism Workgroup Latinos also showed increased understanding of research participants’ rights (t(39)=3.59, p=.001).
• Consists of researchers, community-based organization members, parents, self-advocates from diverse cultural AAs showed no change in any items, in part due to their higher baseline scores.
backgrounds Asians showed an increase in perceived knowledge in core deficits of ASD only (t(24))=3.29, p=.003).
• Meets monthly to discuss research design, project updates, recruitment, conference planning, data analysis and Attendees agreed that the conference increased their knowledge in autism, services, advocacy, and transitions, and that
dissemination the conference helped them make new connections. AA and Latinos rated the conference higher than Asians.
Conference Theme: The Power of Connectivity in the Community Discussion
• Community and academic partners jointly decided on conference topics and speakers, developed surveys,
reviewed past years’ evaluation data, led conference sessions and collected data • The CPPR conference successfully engaged diverse underresourced communities, increased attendees’ perceived ASD knowledge and
research trust, and was highly rated.
• Main topics: advocacy, transition, AIR-B research updates
• Each group’s baseline knowledge, culture-specific attitudes, and native language likely contributed to differential results by race/ethnicity.
• Surveys collected: demographics, perceived ASD knowledge and research trust, and conference evaluation
• Future research should consider incorporating culturally-adapted content in CPPR conferences and examine research-community
• English, Korean, and Spanish materials and interpretation were provided partnerships’ long-term impact on the autism community.
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HSS) under grant # UA3MC11055, the Autism Intervention Research Network on Behavioral Health (AIR-B). Contact: Hyon Soo Lee hyonsoolee@g.ucla.edu