Seeking Information and Support Online: The Development of an Online Resource ‘Pathways Beyond Diagnosis’ for Parents of Children Diagnosed with Autism Spectrum Disorder

Background: The world wide web provides an ideal avenue to share information, advice, and support about an autism diagnosis. However, many websites lack quality control and do not provide a one-stop resource for families to access necessary information.

Objectives: The aim in this study was to use participatory action research (PAR) with end users (parents, clinicians) and our research team to develop an online resource to improve timely access to, and better quality, information and support for families post-diagnosis.

Methods: The PAR approach has been successful in generating research evidence to address community-based challenges. It involves four major phases: (1) cooperative researcher-stakeholder planning, (2) stakeholder-based action, (3) stakeholder-observation, and (4) cooperative researcher-stakeholder reflection. In the present study, each phase included Participatory Design (PD) workshops, where participants attended individual and/or group meetings; this was followed by translation of knowledge and ideas generated during workshops to produce mock-ups of webpages and content; rapid prototyping; and one-on-one consultations with end users to assess usability of the website.

Results: Three PD workshops were held with 15 end users (parents of children with autism n=3, health professionals and researchers n=12). Each workshop was followed by a knowledge translation session. At the conclusion of this PAR cycle, the alpha prototype of the website was built, and one round of one-on-one end user consultation sessions was conducted. The PAR cycle revealed the importance of six key topic areas (e.g., understanding autism, accessing services, support, gaining funding, putting it all together, looking into the future) associated with the time of diagnosis.

Conclusions: The development of this website using PAR presents a promising approach to assure that families receive practical and evidence-based information about the steps to take following a child’s diagnosis. Without re-inventing what already exists, ‘Pathways Beyond Diagnosis’ seeks to inform families of where they can access relevant and reputable information but also summarises important challenges encountered post-diagnosis (i.e., grief, sharing the diagnosis).