Tag Archives: ASD

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

Article Authored By: Ivana Martinović and Ivanka Stričević

Reviewed by: Camille Hyatt, Richard Schock, Kate Lasky, Sandra Nunez Currier, and Nicole Cooksey-Voytenko

Link to article: http://www.informationr.net/ir/21-4/isic/isic1609.html

Review of “Information Needs and Behaviour of Parents of Children with Autism Spectrum Disorders: Parents’ Reports on their Experiences and Perceptions” by Ivana Martinović and Ivanka Stričević

http://www.informationr.net/ir/21-4/isic/isic1609.html

Article Synopsis and International Perspective
In a recent fact sheet entitled Autism Spectrum Disorders published November 2019 by the World Health Organization, rates of autism (ASD) among children are estimated to be as high as one in 165, while further noting that when examined longitudinally, this number appears to be steadily increasing. While public awareness of neurodiversity-related issues has grown, this awareness may be, in part, ascribed to increased diagnoses; regardless, public awareness has not kept pace with the rate of increase in diagnoses (Martinović & Stričević, 2016). Thus, significant information gaps remain among parents of children with ASD, both in developed countries where there are more avenues for ASD care and opportunities and in countries such as Croatia where much work in this area remains to be done (Martinović & Stričević, 2016).
Researchers Ivana Martinović and Ivanka Stričević sought to examine this subject from the perspective of Croatian parents of children recently diagnosed with ASD. They jointly presented the results of their study at the ISIC information behavior conference in Zadar, Croatia, in September 2016. The authors note the rising incidence of ASD and a concurrent lack of information on the topic available to parents of such children. Martinović and Stričević, utilizing a convenience sampling technique, identified 13 participants with children with ASD who were willing to engage with the researchers, sharing their experiences and information needs. As Martinović and Stričević note, the lack of previously gathered data among the Croatian populace points to a definite need for further studies.

Core Research Questions
Because there is no prior data as to information-seeking behavior for parents of children with ASD in Croatia, Martinović and Stričević begin their study with basic research questions, trying to discern the parents’ information needs. Interestingly, though they are defining information-seeking behavior, their aim is to “provide medical specialists with recommendations… [for] providing information to parents within the sphere of medical and social care,” (Martinović & Stričević, 2016) intimating that the “where” of Martinović’s and Stričević’s question, “where [do] they perform their searches[?]” is likely not the library, which is a shift in perspective. In the United States, for example, information-seeking behavior is generally considered by librarians, less by medical professionals. How much do American medical specialists consider the information-seeking behavior of their patients and families, and are they receptive to recommendations from outside researchers?
The research questions asked by Martinović and Stričević were:
What kind of information needs do parents of children with ASD have?
How do parents of children with ASD seek information that they need?
How do parents assess information they found?
What barriers do they face when seeking information? (Martinović & Stričević, 2016)
In observing this list of questions, there are noted holes in the research area of services provided for children with ASD, which would make for a strong follow-up to this study, and building blocks for ASD infrastructure in Croatia.

Study Methods
The study utilized a semi-structured interview that was audiotaped and transcribed for analysis purposes. The subjects interviewed were 13 parents whose children were diagnosed with ASD and between the ages of 3 ½ – 20 years old. Study data included the gender of the parent, the child’s age, and how long the child has been diagnosed with ASD.
Study participants were reached by the Association of Families of Children with Autism ‘Dar’ in Osijek, Croatia. Each participant was given a code for identification to keep their identity confidential. All of the interviews (~20 minutes in length) were subject to qualitative content analysis and translated into English.

Findings and Conclusions
Martinović and Stričević found that parents of children with ASD were looking for general facts about autism. Typically, these parents had no prior knowledge of what autism is, or how to deal with it. Initially, they wanted to know what it is, how it can be treated, what therapies are best, and what lies ahead for their child (Martinović & Stričević, 2016). Parents wanted to find out if their child would be able to go to a regular school, become independent, and have a normal life. Parents found the majority of their information on their own using the internet, books, other printed materials, professionals, and other parents with similar experiences. Parents did not receive adequate information from doctors and had to find it independently, often becoming overwhelmed with an overload of confusing information. The most trusted information came from other parents as well as specialists. To determine if the information was sound, they tested it on their own child to see the results. The sheer amount of information written in medical terms often contrasted one with the other, and the lack of ASD expertise or experience were reported as barriers for parents when searching for information.

What American Libraries Can Learn
American libraries can benefit from the global practice of research about parents of children with ASD. Ivana Martinović and Ivanka Stričević of the Croatian community highlight inequities in access that can be tested and possibly reflected in American communities. Concrete data around the information-seeking behavior of this community helps librarians provide access to needed information through taught search methods and in-house awareness of ASD services and organizations.
“Many results of this research match the findings of other researches from foreign countries. One can conclude that parents of children with ASD have the same information needs, regardless of the part of the world they come from” (Martinović & Stričević, 2016). American libraries and librarians can take away critical findings from the article for immediate practice, such as the importance of curating local resources and raising awareness about ASD within their communities to prevent inequities in access to information when it is most critical for parents. American libraries can also drive and participate in local research — “Hospital, higher education institutions and public libraries should conduct regular studies of the health information needs and information seeking behaviour of parents of children with ASD in order to equip their users with relevant health information” (Martinović & Stričević, 2016).

References

Martinović, I. & Stričević, I. (2016). Information Needs and Behaviour of Parents of Children with Autism Spectrum Disorders: Parents’ Reports on their Experiences and Perceptions. Proceedings of ISIC, the Information Behaviour Conference, Zadar, Croatia, 20-23 September, 2016: Part 1. Information Research, 21(4), paper isic1609. Retrieved from http://InformationR.net/ir/21-4/isic/isic1609.html

World Health Organization, (2019, 7 November). Autism spectrum disorder. https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders