A Systematic Review of Recruiting and Retaining Sociodemographically Diverse Families in Neurodevelopmental Research Studies

J Autism Dev Disord. 2023 Apr 6. doi: 10.1007/s10803-023-05968-x. Online ahead of print.

Abstract

Underrepresentation of socioeconomically, culturally, and/or linguistically diverse (SCLD) children with neurodevelopmental disorders (NDD) and their families has become a focal point for researchers. This systematic review aimed to identify researchers' strategies for recruiting and retaining SCLD families of children with NDD, published between 1993 and 2018. One hundred twenty-six articles were included, and study samples were categorized as "High SCLD" and "Low SCLD". Chi-square tests of independence were used to determine associations between sample composition (i.e., High/Low SCLD sample) and study characteristics reported. Significant associations were found between sample composition and studies that explicitly stated intention to recruit SCLD families, χ2(1) = 12.70, p < .001, Phi = 0.38 (moderate); and for studies that reported the following participant characteristics: language, χ2(1) = 29.58, p < .001, Phi = 0.48 (moderate-to-large); and race/ethnicity + SES + language, χ2(1) = 19.26, p <. 001, Phi = 0.39 (moderate). However, associations were not found between recruitment and retention approaches and whether studies included High SCLD or Low SCLD samples. Further study of NDD researchers' recruitment and retention approaches that successfully include SCLD families is needed.

Keywords: ADHD; Autism; Diverse families; Neurodevelopmental disorder; Recruitment; Research participation; Retention; Underrepresentation.