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<p>Studies in the field of autism spectrum disorder (ASD) have highlighted the underrepresentation of socioeconomically, culturally, and linguistically diverse (SCLD) groups in research as an area for growth towards reducing disparities in ASD care. Research outcomes are limited regarding relevance, generalizability, and utility for SCLD families, further upholding structures of health inequity. Underrepresentation in ASD research is thought to be a source of service disparities among individuals with ASD and their families. Despite recommendations for improving the engagement of SCLD families in ASD research, underrepresentation persists. Eight semi-structured interviews with SCLD mothers of children with ASD were conducted to explore what they knew about research in ASD and their preferences regarding researchers’ engagement practices. Thematic analyses revealed that SCLD parents (1) generally view research as helpful, but desire better understanding of research processes; (2) are interested in research that benefits their children across settings and development; (3) have an altruistic stance toward research participation; (4) need incentives that provide practical support for them and their families; (5) experience logistical, social, and cultural barriers to research participation; and (6) are more likely to participate in research when multiple community-based recruitment strategies are used. These initial findings offer a window into the motivators and barriers for SCLD families’ participation in ASD research and may be used to guide future study designs. Moreover, these findings warrant further discussions about community-involved research, ethical responsibilities of psychological scientists, and continued efforts in ASD research to reduce health disparities in practice.</p>

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Improving Representation in Autism Research: A Qualitative Study of Mother’s Perceptions

  • 期刊论文

  • 发表日期：

    2025年3月3日

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  • Georgina J. Sakyi,
  • Jelisa Boykin,
  • Sarah S. Mire,
  • Robin P. Goin-Kochel,
  • Chaya N. Murali

摘要

Studies in the field of autism spectrum disorder (ASD) have highlighted the underrepresentation of socioeconomically, culturally, and linguistically diverse (SCLD) groups in research as an area for growth towards reducing disparities in ASD care. Research outcomes are limited regarding relevance, generalizability, and utility for SCLD families, further upholding structures of health inequity. Underrepresentation in ASD research is thought to be a source of service disparities among individuals with ASD and their families. Despite recommendations for improving the engagement of SCLD families in ASD research, underrepresentation persists. Eight semi-structured interviews with SCLD mothers of children with ASD were conducted to explore what they knew about research in ASD and their preferences regarding researchers’ engagement practices. Thematic analyses revealed that SCLD parents (1) generally view research as helpful, but desire better understanding of research processes; (2) are interested in research that benefits their children across settings and development; (3) have an altruistic stance toward research participation; (4) need incentives that provide practical support for them and their families; (5) experience logistical, social, and cultural barriers to research participation; and (6) are more likely to participate in research when multiple community-based recruitment strategies are used. These initial findings offer a window into the motivators and barriers for SCLD families’ participation in ASD research and may be used to guide future study designs. Moreover, these findings warrant further discussions about community-involved research, ethical responsibilities of psychological scientists, and continued efforts in ASD research to reduce health disparities in practice.