Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design
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Aspasia Stacey Rabba1,2, Cheryl Dissanayake1,2, Josephine Barbaro1,2
1Olga Tennison Autism Research Centre, La Trobe University, Melbourne, Australia.
Insights
This study developed the Pathways Beyond Diagnosis website using participatory action research (PAR) to provide families with essential, evidence-based autism information and support after diagnosis.
Area of Science:
- Autism Spectrum Disorder Research
- Digital Health Interventions
- Family Support Systems
Background:
- The internet offers valuable resources for autism information, but quality control is often lacking.
- Families need a centralized, reliable source for evidence-based autism information post-diagnosis.
Purpose of the Study:
- To develop a web-based resource, Pathways Beyond Diagnosis, using participatory action research (PAR).
- To improve timely access to quality, evidence-based information and support for families of children newly diagnosed with autism.
Main Methods:
- Employed a 4-phase participatory action research (PAR) approach involving parents, clinicians, and researchers.
- Conducted participatory design workshops, knowledge translation sessions, and user consultations for website development and usability testing.
Main Results:
- Identified 6 key topic areas crucial for families post-diagnosis: understanding autism, accessing services, support, funding, integration, and future planning.
- Developed an alpha prototype and subsequently a beta version of the Pathways Beyond Diagnosis website based on user feedback and identified needs.
Conclusions:
- The Pathways Beyond Diagnosis website, developed through PAR, provides families with accessible, practical, and evidence-based information following a child's autism diagnosis.
- The resource addresses key challenges such as grief and disclosure, while emphasizing the importance of self-care for families.
Background:
The 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.
Objective:
This 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.
Methods:
The 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.
Results:
A 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.
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 summarizing key challenges encountered after diagnosis (ie, grief, sharing the diagnosis) and the importance of self-care.
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