Information behaviour of parents of children with autism spectrum disorder (ASD): a case study

Abstract

Introduction. This investigation focuses on the information behaviour of parents of children with autism spectrum disorder (ASD) inside an organisation (Aletea) located in Montevideo-Uruguay. This study aims to make visible the information needs these parents experience when making decisions for their children’s welfare. It is the first phase of an investigation to provide an indepth comparison with other countries. Method. A literature review, database analyses and web searches were done to standardise the current work with the methodology of the field. Also, with a convenience sample, 12 semi-structured interviews were conducted among parents of this organisation. Analysis. Qualitative analyses were carried out as all the interviews were recorded on audio with prior consent of the interviewees. The questions were classified into categories and sub-categories for a better understanding of the results. Results. Parents' information practices demonstrate obstacles and difficulties in seeking and accessing available and reliable sources regarding autism spectrum disorder. The lack of information generated at local levels leads to consulting and sharing information with their closest contacts and social networks, especially their peers in parent groups. Conclusion. It is considered necessary to continue with this line of research both in Uruguay and around the world since there is a lack of studies on this subject.

The complex information needs of Chinese parents of children with autism spectrum disorder

“…It is thereafter related to the knowledge reserve and mastery of parents. Before the age of three, parents need initial and regular guidance as newcomers to dealing with ASD (Chávez and Sabelli, 2020). As rehabilitation progressed, parents gradually acquire knowledge and skills, and thus the need for this information gradually decreases.…”

“…Parents urgently need guidance and planning advice, especially at the beginning of the diagnosis. This is because most families do not begin to understand ASD until the child is diagnosed (Ch avez and Sabelli, 2020;Grant et al, 2015). In addition, parents have concerns about their child's future development.…”

“…, 2017). Chávez and Sabelli's (2020) studies on the information behaviours of parents of autistic children identified obstacles and difficulties in obtaining reliable information sources. They shared information with the closest people and social networks to compensate for the lack of organisational information, especially peers in the same situation.…”

Information needs and services for autism in China: is there any gap between them?

“…On the other hand, the lack of information leads parents of autistics to consult, share and exchange information online (e.g. online forum) (Chávez and Sabelli, 2020; Lin and Chang, 2018). For these special groups, the online environment allows them to more freely ask for sensitive information (Ruthven et al , 2018), and the online UGC has become fresh and effective research data for the study on health information needs (Hasler et al , 2014; Ji et al , 2017).…”