The inclusion of children with disabilities in oral health research: A systematic review

OBJECTIVE: This systematic review aimed to describe the extent to which oral health research since the advent of the United Nations Convention on the Rights of the Child, the United Nations Convention on the Rights of Persons with Disabilities and the current movement on the inclusion of voices of children, has been done on or with children with disabilities. METHODS: A systematic review of the dental literature for children with disabilities from 2001 to 2017 was conducted. Electronic databases were searched for oral health literature on the involvement of children with disabilities. Each identified article was examined by 2 reviewers against the inclusion criteria and categorized according to the extent to which children with disabilities were involved in oral health research, type of study, children's ages, type of impairment and the country of origin. RESULTS: The search included 113 articles after application of the exclusion criteria. Of these papers, 6.2% were classified as research with children, 41.6% used proxies to gain the perspective of children with disabilities and 52.2% were classified as research on children with disabilities. The majority of studies, which attempted some form of inclusion, were from Sweden and India. CONCLUSIONS: Most oral health research is conducted on children with disabilities (viewing them as objects) rather than with them (viewing them as active participants). Unlike previous systematic reviews which report an increase in the inclusion of the voices of children in oral health research, children with disabilities were mostly excluded from research. Future research should attempt to use methods which involve children with disabilities as fully as possible in the research process. This ensures that their perspectives are obtained and their voices are heard.