End-user perspectives on the development of an online intervention for parents of children on the autism spectrum.
Susannah Hermaszewska, Jacqueline Sin
PMID 33423522WHAT IT FOUND
Parents of autistic children described online services as fragmented and hard to trust.
They asked for a single hub combining peer support, clear diagnosis pathways, and direct access to professionals like SLTs and OTs, with content they could search by their child's specific needs.
Key findings
01Parents reported that difficulties with formal services, including long waiting times and inadequately trained staff, prevented them from accessing local support or even knowing it existed.
02Participants requested an online community that allows them to filter discussion boards by topic, location, and their child's condition to find relevant support.
03Parents specifically wanted direct access to healthcare professionals, naming speech and language therapists and occupational therapists, to provide expert opinion alongside peer support.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
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What it does not show
The study involved only 17 parents from London and South East England, so the views may not represent parents in other regions or with different cultural backgrounds. Three of the five focus groups had only three participants, which is smaller than recommended, potentially limiting the diversity of views shared. This was a design study for an intervention that has not yet been built or tested, so it reports what parents *want*, not what actually works.
Declared interests
The authors declared no potential conflicts of interest. The study was funded by the University of Reading's School of Psychology and Clinical Language Sciences for travel expenses.
The easy way to misread this
Do not assume this online intervention exists or has been proven effective. This paper reports what parents said they wanted during the design phase. The intervention was not built, tested, or shown to improve outcomes in this study.