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

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.

Validating the Revised Illness Perception Questionnaire as a Measure of Parent Perceptions of Autism Spectrum Disorder.

The illness perception questionnaire (IPQ) and its revision (IPQ-R) measure perceptions about health-related diagnoses and the influence of cognitions on coping. In this study, the factor structure of a version revised for use with autism spectrum disorder (ASD) was investigated with a sample of parents (n = 361) whose children have ASD. Subsequently, multidimensional item response theory was used to evaluate item and subscale properties. Results indicated items from five of the seven IPQ-R-ASD scales loaded as expected, though subscales related to control were not distinct. Additionally, parents' response patterns were evaluated and discussed. Use of this measure in ASD-focused research may enhance understanding of how parents' cognitions of their child's ASD impacts treatment selection, treatment implementation, and overall family well-being.