Abstract
BackgroundThe internet provides an ideal avenue to share information, advice, and support regarding autism. However, many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based information.ObjectiveThis study aims to use participatory action research (PAR) with end users (ie, parents) and clinicians to develop a web-based resource (Pathways Beyond Diagnosis) to improve timely access to quality, evidence-based information, and support for families after their child is diagnosed with autism.MethodsThe PAR approach involves 4 phases: (1) cooperative researcher-stakeholder planning, (2) cooperative researcher-stakeholder–based action, (3) stakeholder observation, and (4) cooperative researcher-stakeholder reflection. A total of 15 participants (parents, n=3; clinicians, n=9; and researchers, n=3) attended individual or group participatory design workshops. This was followed by the translation of knowledge and ideas generated during the workshops to produce mockups of webpages and content, rapid prototyping, and one-on-one consultations with end users to assess the usability of the website developed.ResultsA total of 3 participatory design workshops were held with the participants, each followed by a knowledge translation session. At the end of the PAR cycle, an alpha prototype of the website was built and a series of one-on-one end user consultation sessions were conducted. The PAR cycle revealed the importance of 6 key topic areas (understanding autism, accessing services, support, gaining funding, putting it all together, and looking into the future) associated with the time of diagnosis, which were incorporated into the beta version of the website.ConclusionsThe development of the Pathways Beyond Diagnosis website using PAR ensures that families have ready access to practical and evidence-based information following a young child’s diagnosis. The website guides families to access relevant, reputable, and evidence-based information in addition to summarizing key challenges encountered after diagnosis (ie, grief, sharing the diagnosis) and the importance of self-care.
Highlights
In the last 5 years, the proportion of users accessing the internet for health services or health research has increased two-fold from 22% in 2014 to 2015 to 46% in 2016 to 2017 [1]
The development of the Pathways Beyond Diagnosis website using participatory action research (PAR) ensures that families have ready access to practical and evidence-based information following a young child’s diagnosis
This paper reports the developmental process of a web-based resource for parents of newly diagnosed children with autism spectrum disorder (ASD)
Summary
In the last 5 years, the proportion of users accessing the internet for health services or health research has increased two-fold from 22% in 2014 to 2015 to 46% in 2016 to 2017 [1]. For parents of children with autism spectrum disorder (ASD), the internet is the most frequently used approach to obtain information [2,3]. Knowing where to look and what to read is one of the greatest challenges in today’s web-based world. When parents receive their child’s diagnosis of ASD, they are often left to navigate the world after the diagnosis on their own without much clarity on steps. The internet is the preferred medium for sourcing autism information, there are currently no guidelines for finding high-quality websites [7]. Many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based information
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