Recommendations for Diversifying Racial and Ethnic Representation in Autism Intervention Research: A Crossover Review of Recruitment and Retention Practices in Pediatric Mental Health

Abstract

Disparities in diagnosis and access to healthcare and therapeutic services are well-documented for children with autism spectrum disorder (ASD) from minoritized races and ethnicities, but there is little empirical research to guide the selection and implementation of interventions and practices that will effectively support racially/ethnically diverse children with ASD and their families. This cross-over systematic review summarizes parent-mediated intervention research of children with or at risk for mental health disorders to identify potentially effective recruitment and retention strategies for diverse participants in parent-mediated intervention research for children with autism. Electronic database keyword, lead author name searches in PyschNet, MEDLINE, and ancestral searches were conducted to identify 68 relevant articles that used experimental designs to evaluate the effects of parent-mediated interventions on children with or at risk for mental health disorders. Articles were coded for participant demographics; intervention setting and type, recruitment and retention strategies, cultural adaptation of intervention, and reported attrition. Findings are discussed and applied to practices in autism parent-mediated intervention research. Suggestions for future research and limitations are discussed.

Priorities, barriers, and facilitators for nutrition-related care for autistic children: a qualitative study comparing interdisciplinary health professional and parent perspectives

“…Parents were recruited via flyers at local non-profit Regional Centers and on two Southern California Facebook autism parenting support groups. To address the lack of perspectives from people of color and fathers in the literature, we intentionally sought to achieve a racially and ethnically diverse group of parents, including both mothers and fathers ( 19 , 20 ). Eligible parents were English-speaking, the primary caregiver of an autistic child between the ages of 3–18 years, and primarily responsible for feeding their child.…”

Reported quality indicators and implementation outcomes of community partnership in autism intervention research: A systematic review

“…According to Williams et al (2023), the use of advisory boards is more likely to increase the representation of diverse community members and help close the research‐to‐practice gap in the autism field by having representative community members directly involved in both research and implementation processes. In addition, Machalicek et al (2022) synthesized mental health intervention literature with a specific focus on recruitment and retention of marginalized participants with neurodevelopmental disabilities, which included partnership with community agencies or organizations that are serving populations of interest.…”