The information-seeking behaviour of Egyptian parents of children with Autism Spectrum Disorder (ASD): a descriptive study

PurposeThe purpose of this study is to investigate the information-seeking behavior of Egyptian parents of autistic children.Design/methodology/approachThe study sample consists of 61 parents across Egypt, divided into six focus groups, as equal as possible, to represent Northern, Middle and Southern Egypt.FindingsDmographically, of the 61 parents, 32 (52.5%) were fathers, and 29 (47.5%) were mothers. A large number of parents' ages ranged from 31 to 45 years old. The highest percentage of them was holding a BA, followed by a high school/diploma, and the highest percentage was found to be married. The parents of autistic children followed many methods and channels to obtain supportive information related to their children's disease. They used many types of information, which varied between formal and informal sources. While just over a quarter of Egyptian parents prefer to use formal sources (books, newspapers, magazines, health publications, pamphlets, as well as specialized libraries), more than three-quarters of them used informal sources, such as mobile/smartphones, the Web, social media and social networking sites. The information related to the search for institutions supporting autistic people came in the first place, then that information related to searching for specialized centers in treating autistic children, then information related to rehabilitation, integration and psychological support centers for these children and then information related to the search for financial aid provided by charitable or even government agencies. Some parents were found to have limited awareness of their children's treatment mechanism, as some of them do not consider the need to treat their children in a systematic, continuous, and systematic manner. Similarly, the lack of basic services and shortage of government centers specializing in the treatment of these children. Parents also emphasized the lack of government support, as well as the lack of curative research centers. Some also pointed out that there was a shortage of workshops for the rehabilitation of their children and themselves as well.Originality/valueThis research is considered to be the first research of its kind at the local and Arab levels, which is also one of the few studies at the regional level that is interested in this community of information seekers. The findings of this research can raise awareness about the information behavior of Egyptian parents of autistic children among those who are interested in the role of the information and its use by specific groups of the information society, as well as decision makers.Peer reviewThe peer review history for this article is available at: https://publons.com/publon/10.1108/OIR-11-2020-0494