Availability and usability of resources for parents of a child living with a disability : an analysis and evaluation of websites (Preprint)

BACKGROUND The internet is a valuable resource for parents of typical children, who are looking for information about their children's growth and development and how to boost them. However, for parents of children with special needs, especially for non-English-speaking parents, there are anecdotal reports stating that specific and accurate information is not available on the internet. OBJECTIVE This study aims to describe the type of information available on the internet for French-speaking parents of children with disability as well as assess the quality of the information collected. METHODS We carried out a search of the existing relevant websites targeted at parents of children with disability. We used a validated instrument to extract structural, textual, and visual characteristics of these websites and evaluate their usability. RESULTS In all, 42 websites were analyzed; of these, the information had been validated by a trustworthy source in only 18 (43%) websites. Networking opportunities for parents were available in only 7 (17%) websites. Most websites provided information related to autism spectrum disorder (20/42, 42%) and learning disabilities (19/42, 45%), and only a few websites discussed other disability types such as behavorial disorders and developmental language disorders (4/42, 10% each). Community, social, and civic life (9/42, 22%); domestic life (12/42, 29%); and mobility (15/42, 36%) were the less frequently covered topics. With regard to the usability evaluation, 22 of the 42 (52%) websites received a global score <70%, whereas 20 (48%) scored ≥70. CONCLUSIONS Although the internet is an infinite source of information, it is not necessarily actionable for parents of children with disability. Some information remains difficult to find online, and networking opportunities with other parents dealing with similar challenges are scarce.