The negative consequences of closed access to scientific data and other barriers to information access – an analysis of the health decisions of parents having children with Autism Spectrum Disorder (ASD)
The negative consequences of closed access to scientific data and other barriers to information access – an analysis of the health decisions of parents having children with Autism Spectrum Disorder (ASD)

Summary/Abstract: A diagnosis of autism can present a great challenge to the family with autistic children, especially to parents. Health information- seeking behavior is described as one of many problem-solving and stress- coping strategies in literature. The information was found to have many important functions, e.g. it can contribute to the process of acceptance, it enables parents to access health care services, then to manage their child’s difficult behavior and it might help parents to respond more effectively to the range of life- changing events that may induce stress. There are many barriers to meeting the information needs of parents having autistic children. Two different types of barriers to information access can be identified: “objective barriers” (problems communicating with health care professionals, healthcare professionals lack of skills and knowledge of managing children with autism, economic barriers to the access of information, information overload and a low level of health literacy) and “subjective barriers” (experience of social isolation and the parents’ emotional state during diagnosis, which have the potential to make the families prone to misinformation).The main aim of this paper is to describe the negative consequences of barriers to the access of scientific research and evidence-based healthcare information (e.g.: spreading anti-vaccine messages). The problem will be discussed using the example of the information- seeking and health- related behaviour of parents with autistic children.

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