Exploring the Information Behavior of Primary Caregivers for Children with Autism Spectrum Disorder: An Information World Mapping Approach

Abstract

This study aims to explore the information needs of primary caregivers of children with autism spectrum disorder (ASD) when caring for the autistic children, and to identify the relationships among people, items, and places in the information world, especially the information sharing behavior. Semistructured in-depth interviews were conducted with the information world mapping visual-elicitation method. Seventeen primary caregivers of children with autism between 6 and 12 years old were interviewed. The current study found that medical information needs, parenting information needs, education information needs, moral support information needs, and everyday-life information needs are the five major information needs of the primary caregivers of children with ASD. Caregivers tend to obtain information through referrals from and among different people, items and places according to different information needs. The typical relationships among people, items, and places include starting from consulting people, back-and-forth between physical and virtual locations, and multiple referrals. As to information sharing, caregivers would only have time to share information with others when having sufficient self-confidence and being in a stable state. And information sharing is more likely to occur somewhere caregivers stay for a long time or visit regularly. While caregivers share information with professionals and families for self-interest, they share information with other caregivers on social media for altruistic purposes. Based on the findings of the current study, practical suggestions for library and information institutions, medical institutions, education institutions, and social welfare institutions are provided.

Keywords

• autism spectrum disorder
• primary caregiver
• information behavior
• information world mapping