Improving Retention of Diverse Samples in Longitudinal Research on Developmental Disabilities

Am J Intellect Dev Disabil. 2023 Mar 1;128(2):164-175. doi: 10.1352/1944-7558-128.2.164.

Abstract

Developmental disabilities (DD) research has depended on volunteer and clinical samples, with limited racial/ethnic diversity. This study focused on improving diversity and retention in DD research. The sample included 225 parents with a child with DD and 4,002 parents without children with DD from diverse racial/ethnic groups, drawn from Midlife in the United States, a national longitudinal study. Unexpectedly, parents of children with DD from diverse racial/ethnic groups were more likely to participate longitudinally than other groups. Relative participant payment was a factor that enhanced their likelihood of retention. This research illustrates how large national studies can be leveraged to increase representativeness and ongoing participation of diverse racial/ethnic groups, especially in combination with other factors, such as parenting a child with DD.

Keywords: developmental disabilities research; diversity; retention in longitudinal research.

MeSH terms

  • Child
  • Developmental Disabilities*
  • Humans
  • Longitudinal Studies
  • Parenting
  • Parents*
  • Social Group
  • United States