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A Paradigm for Engaging Underrepresented Communities in Autism Research
Objectives: This pilot study tested the efficacy of a community- and participant-centered paradigm for recruiting and retaining minority adolescents and young adults of low SES with extensive special education needs in behavioral autism research.
Methods: The NYC Department of Education and the University of Kansas IRBs approved this study. A community- and participant-centered paradigm was implemented over a four-month period. The first author partnered with a community organization to recruit participants. Participants attended a Title I school requiring a diagnosis of ASD. Most students are racial/ethnic minorities and qualify for free lunch. The school consists of self-contained classes with a maximum class size of 6 - 12 students.
Recruitment included proactive and reactive strategies. In addition to disseminating information on a flyer, the first author made repeated visits to the recruitment site to distribute/collect flyers and provided individual consultation on the research process to participants and their families.
Formal recruitment and assessment happened in a single session at a time and place selected by participants’ families outside of school. Each session required 10 minutes for assent and informed consent, and 60 minutes for assessment. Participants and their families were compensated $20 and $40, respectively.
Results: The paradigm was effective. 12 of 80 (15%) potential participants returned consent-to-contact forms, 10 of 12 (83%) were successfully contacted, and 10 of 10 (100%) were formally recruited and retained. All participants were male, racial and/or ethnic minorities, and adolescents or young adults (100%). The paradigm was costly in terms of time. Assessment and recruitment required 30 hours and 20 hours respectively, or 5 hours per participant. Most of this time was spent traveling to the research sites.
Conclusions: This study demonstrated the efficacy of a community- and participant-centered paradigm to engage racial/ethnic minority adolescents and young adults of low SES with extensive special education needs in behavioral autism research. Findings suggest when barriers to participation are removed, it is feasible to engage underrepresented communities in autism research. Further work is needed to learn how to make this paradigm efficient, sustainable, and scalable.
Additional references available upon request.
Ibrahim, S., & Sidani, S. (2014). Strategies to recruit minority persons: a systematic review. Journal of Immigrant and Minority Health, 16(5), 882-888.
Lennox, N., Taylor, M., Rey‐Conde, T., Bain, C., Purdie, D., & Boyle, F. (2005). Beating the barriers: recruitment of people with intellectual disability to participate in research. Journal of Intellectual Disability Research, 49(4), 296-305.
Zamora, I., Williams, M. E., Higareda, M., Wheeler, B. Y., & Levitt, P. (2016). Brief report: Recruitment and retention of minority children for autism research. Journal of Autism and Developmental Disorders, 46(2), 698-703.