JMIR Publications

ABSTRACT

Background:

The world wide web provides an ideal avenue to share information, advice, and support regarding an autism diagnosis. However, many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based, information.

Objective:

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 (‘Pathways Beyond Diagnosis’) to improve timely access to quality, evidence-based information and support for families post-diagnosis of their child with autism.

Methods:

The PAR approach involves four phases: (1) cooperative researcher-stakeholder planning, (2) stakeholder-based action, (3) stakeholder-observation, and (4) cooperative researcher-stakeholder reflection. Fifteen participants (parents (3), clinicians (9) and researchers (3) attended individual and/or group Participatory Design (PD) workshops; 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 developed website.

Results:

Three PD workshops were held with the participants, with each followed by a knowledge translation session. At the conclusion of the PAR cycle, an alpha prototype of the website was built, and a series of one-on-one end user consultation sessions was conducted. The PAR cycle revealed the importance of six key topic areas (understanding autism, accessing services, support, gaining funding, putting it all together, looking into the future) associated with the time of diagnosis, which were incorporated into the beta version of the website.

Conclusions:

The 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 summarising key challenges encountered post-diagnosis (i.e., grief, sharing the diagnosis) and the importance of self-care.