Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

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Rabba, A. S., Dissanayake, C., & Barbaro, J. (2020). Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design. JMIR Pediatrics and Parenting, 3(2), e15786. https://doi.org/10.2196/15786

Publication date: 20 Jul 2020 Added to AutiHub: 7 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
3
Publication authors identified as autistic
1 / 3 (33.3%)
  1. Aspasia Stacey Rabba
  2. Cheryl Dissanayake
  3. Josephine Barbaro *

Abstract

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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 07:09.

Cited references
45
With a DOI
39
Without a DOI, from raw bibliography text
6
2 / 45 (4.4%) cited references include at least one author identified as autistic.
References with data to complete
6 / 45 (13.3%)
References with detected author names
43 / 45 (95.6%)
Without detected author names
2
Without a structured title
6
Without a stable identifier
6
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
159
From DOI or external metadata
159
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
20 / 159 (12.6%) names are linked to an author already present in AutiHub. 139 / 159 (87.4%) names are not yet linked.
Names linked to a person identified as autistic
2 / 159 (1.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 2 / 20 (10.0%). Distinct people identified as autistic: 1 / 152 (0.7%).
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