ArticleJMIR pediatrics and parenting2020
Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design.
Article in JMIR pediatrics and parenting, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
6 citing papers in PubMed, 16 citations in OpenAlex.
- Dynamics of Digital Support Platform Use Among Family Caregivers of Children With Disabilities: Longitudinal Study.JMIR mHealth and uHealth · 2026Article
- Autism-Related Information on Websites and General-Purpose Artificial Intelligence Chatbots: Comparative, Bilingual Study.JMIR formative research · 2026Article
- Development of an eHealth Intervention in Pediatric Home Infusion Therapy: Interview Study of Needs and Preferences of Parents and Health Care Professionals.JMIR pediatrics and parenting · 2025Article
- Citizen involvement in research on technological innovations for health, care or well-being: a scoping review.Health research policy and systems · 2024Article
- ChatGPT: Artificial Intelligence as a Potential Tool for Parents Seeking Information About Autism.Cyberpsychology, behavior and social networking · 2024Article
- Becoming aWARE: The Development of a Web-Based Tool for Autism Research and the Environment.Journal of xenobiotics · 2023Article
Corrections and comments
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Authors and funding
3 authors at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
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