Information needs and behaviour of parents of children with autism spectrum disorders: parents’ reports on their experiences and perceptions

Abstract

Introduction. The paper presents the findings on the information needs and behaviour of parents whose children exhibit a range of autism spectrum disorders. Beside literature review on the topic, it brings the findings of a study conducted in the Osijek-Baranya County (Croatia).

Method. The study utilized a semi-structured interview format.

Analysis. The analysis includes 13 interviews in total. The interview transcripts were used as the data for qualitative analysis.

Results. The results demonstrate which information needs parents of children with autism spectrum disorders have before and in various stages upon finding out that the development of their child is not compliant with regular developmental norms. The results also reveal what kind of information parents seek and which information sources they use while seeking information related to autism spectrum disorders as well as what parents do and which barriers they face when searching for and evaluating information.

Conclusion. The research results show that prior to the initial suspicion of an autism spectrum disorder, parents often lack information and knowledge on the disorder and its possible manifestations in the child’s behaviour, which is reflected in late and hampered determination of disorder symptoms, therapy and rehabilitation. The information that parents seek relates to public services and support, therapy and rehabilitation, proper education for the child, relevant institutions, professional assistance in the childcare and immediate responses to daily problems. They feel confused because the sources of information they use offer different solutions. The closing section of the paper offers some recommendations for further research as well as their implications in practice.

Keywords: information needs, information resources, information behaviour, information seeking, information barriers, parents, children with autism spectrum disorders, autism

Paper is published in Information Research 21(4): Information needs and behaviour of parents of children with autism spectrum disorders: parents’ reports on their experiences and perceptions 

Information sharing and seeking in diverse contexts
Location: Aula Magna Date: September 21, 2016 Time: 4:00 pm - 4:30 pm Ivanka Stričević Ivanka Stričević Ivana Martinović Ivana Martinović