Community-Partnered Participatory Research in Autism: Engaging Underresourced African American, Korean and Latino Communities

Background: Despite the advancement in ASD research, engaging underresourced minorities remains a challenge. In addition to financial barriers, cultural factors contribute to these families’ low research participation. For example, many African Americans (AA) who have experienced history of research abuse distrust research; Korean Americans, the majority of whom are first-generation immigrants, are excluded from most ASD studies due to language barriers. Community members who understand cultural barriers can help motivate families to participate in research. In community-partnered participatory research (CPPR), community members share power equally with academic partners in all research phases and ensure research prioritizes community needs. CPPR utilizes community engagement conferences to educate the community and build research-community trust. CPPR conferences have shown success in engaging underresourced communities in other disciplines, but have not been examined in ASD.

Objectives: The goal of the study was to examine whether a CPPR conference can engage underresourced AA, Korean, and Latino communities and increase attendees’ perceived ASD knowledge and trust toward research.

Methods: The conference, held in a Los Angeles church for four consecutive years, was part of the AIR-B III Network’s larger CPPR study. Academic and community partners met monthly to plan the conference and multicultural staff reached out to diverse communities. Conference attendees were verbally consented to participate in demographic, perceived ASD knowledge and research trust, and conference evaluation surveys. English, Korean, and Spanish materials and simultaneous interpretation were provided. Community and academic partners co-led conference sessions, directed attendees and collected data together.

Results: Excluding staff (>50), 153 participants attended. More than half (51%) were caregivers of individuals with ASD, with 21% earning $9,999 or less annually. Races included Latino (49%), Asian (24%), AA (18%) and others (8%); 39% reported their primary language as non-English (Table 1). Bonferroni-adjusted repeated measures t-tests were conducted to examine score changes on the 15-item perceived ASD knowledge and research trust survey pre- and post-conference. Attendees showed increases in perceived knowledge in core deficits of ASD (t(94)=3.04, p=.003)), finding effective therapies (t(94)=5.19, p<.001)), and trust in community agencies (t(94)=3.50, p=.001)) and ASD research (t(93)=5.21, p<.001)) (Table 2). Analyses by race also revealed Latinos’ increased understanding of research participants’ rights. However, AA showed no change in any items, in part due to their higher baseline scores; Asians showed an increase in perceived knowledge in core deficits of ASD only. No decreases in scores were found. Attendees agreed that the conference increased their knowledge about autism and services (99%), advocating for individuals with autism (98%), transitions (100%), and that the conference helped them make new connections (99%). AA and Latinos rated the conference higher than Asians.

Conclusions: The CPPR conference successfully engaged diverse underresourced communities, increased attendees’ perceived ASD knowledge and research trust, and was highly rated. Findings highlighted the need for culturally-tailored information; the conference’s impact and ratings differed by race. Each group’s baseline knowledge, culture-specific attitudes, and native language likely contributed to differential results. Future research should consider incorporating culturally-adapted contents in CPPR conferences and examine research-community partnerships’ long-term impact on the autism community.