Exploring methodologies for establishing prevalence of deafblindness in children: A scoping review

Deafblindness refers to a functional restriction of both hearing and vision, and presents at all ages. Determining prevalence of deafblindness, particularly in children, is challenging. The aim of this review was to explore and assess methodologies previously used to determine the prevalence of childhood deafblindness in both peer-reviewed and grey literature. Five databases were included in the search – Medline (OVID), PubMed, Scopus, CINAHL, and PsycINFO. Thirteen peer-reviewed articles and 11 documents from the grey literature met inclusion criteria for the review. In exploring the literature on deafblindness in children, it is evident that the characteristics and needs of this population are not well described. Approaches adopted by researchers show inconsistencies in how deafblindness is defined, assessed and diagnosed, making comparison challenging. To understand the needs of this group, it is critical that the childhood deafblind population is accurately described. Recommendations are made for the assessment of the population of children with deafblindness.