Parental Participation in Intellectual and Developmental Disability Research: A Review of Diversity

Abstract

Parents provide important insights into the psychology, behaviors, and activities of themselves and their children with intellectual and developmental disabilities (IDD). However, it is unknown how prevalent parental participation in IDD research is in general, nor the diversity of geographical locations and research methods of these studies with parental participation. The current review screened 7845 published works in 7 IDD-focused journals between 2010 and 2019. A total of 1519 articles, accounting for 19.37% of all screened works, included at least one parental measure. For each parental article, we coded the country/continent of authors/participants, measurement tools used to obtain data from parents (e.g., questionnaire, interview), and the focus of the measurement (i.e., about parents, child, or both). We found an increasing number and proportion of studies involving parents between 2010 and 2019. Most studies (76%) came from North America and Europe, whereas other continents such as Africa and South America represented less than 1% of all studies reviewed. The predominant (88.0%) measurement tools were questionnaires and interviews. More studies were about both the children and the parents (42.6%) than either only the children (31.3%) or only the parents (26.1%). Together, our review showed a somewhat limited diversity in parental participation in IDD research and these findings have important implications for future research.