Information seeking by parents of children with physical disabilities: An exploratory qualitative study.
Parents trust peer networks first; meet them there and teach a three-source rule for reliable disability information.
01Research in Context
What this study did
Ivy et al. (2017) talked with parents who have children with physical disabilities. They asked how these parents find and check disability-related information.
The team used open-ended questions and group chats. Parents shared real stories about where they look for help and how they decide what to trust.
What they found
Parents pick different sources for different needs. They lean on other parents and closed Facebook groups when they want lived-experience tips.
Before they act, they cross-check facts with at least two more places. Peer stories plus doctor sheets give them peace of mind.
How this fits with other research
Ouyang et al. (2024) show parent training works best when it starts simple and grows. Ivy et al. (2017) explain why: parents first want friendly peer voices, not dense manuals. Together, the papers say begin training in parent-run spaces, then add clinical layers.
Marsack-Topolewski et al. (2025) carry the idea into adulthood. They find parents still juggle jobs and caregiving for grown children with ASD. The same peer networks W et al. saw for childhood info now help aging parents find respite and job leads.
Andrews et al. (2024) seem to clash at first. Their survey says autistic adults learn more and feel less stigma from blogs than from clinics. Ivy et al. (2017) praise triple-source checking, which often includes clinics. The gap closes when you see M et al. count blogs as one valid source in a wider check, matching the parents' rule of "peer plus pro."
Why it matters
You can save parents hours of hunting. Hand them a short list of vetted peer groups and teach the triple-check habit: peer story, professional site, and one more source. Start parent training inside these trusted spaces and you will see faster buy-in and better fidelity.
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02At a glance
03Original abstract
BACKGROUND: Evidence suggests that parents of children with disabilities feel that not all their information needs are being met, but it remains unclear how parents try to fill these information gaps. AIMS: The aim of this study is to describe how parents of children with physical disabilities search for and evaluate information. METHODS: Qualitative semi-structured interviews were conducted with 15 parents of children with a disability, aged 1.5-21 years. Data were analysed using thematic analysis. RESULTS: There was much variation in information needs between parents. Parents used different sources, depending on the type of information needed, the most important being healthcare professionals, peers, and websites. Peers played an important role in information provision and were the preferred source of experience-based knowledge and support. The Internet is a widely used medium to search for information and to access various sources. There was a general preference for closed Internet communities for peer contact. Information was commonly evaluated by comparing sources. CONCLUSIONS AND IMPLICATIONS: Parents use different sources for different information needs, and evaluate information by comparing them. Healthcare professionals and parents can support each other in locating and evaluating information including experience-based knowledge. Healthcare professionals should guide parents in their search for information and experience-based knowledge from peers.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2016.11.015