Many parents can be anxious when their child is sick. So looking online for health information can help them understand their child’s medical condition and take an active role in treatment. Seeking health information can also be a coping strategy for parents coming to terms with their child’s illness.
But parents have reported being worried about whether the online health information they find is reliable and relevant, and are concerned about the possibility of misdiagnosis. They can also feel overwhelmed by the amount of information online, which can be difficult to understand.
Just more than half of the parents we surveyed for a recent study were hesitant to act on, or present the information they found online, to the treating doctor. This was despite the fact 73% believed the information influenced the questions they asked the doctor.
Previous studies have highlighted barriers to parents discussing their online research with doctors. They include finding a suitable time, given the doctor’s high workload, and a fear of being perceived as “bossy”, “a whinger”, “difficult” or “pushy”.
Other difficulties may arise if the doctor lacks interest in the information parents find because they believe it lacks credibility or is irrelevant.
A 2015 study found that, of the 110 parents of children with cancer who searched for online medical information, only 47% shared it with their child’s oncologist, but around 86% would have liked to have done so.
Unlike doctors, parents aren’t trained in how to verify the information they find. When seeking health information online or in parenting forums, it’s important to make sure it’s credible and discuss it with the doctor.
Parents looking for information
Our interviews with parents found online health information can provide reassurance and improve adherence to treatment.
We surveyed 308 parents of sick children at The Children’s Hospital at Westmead. We found 90% of parents searched for health information online. Of these, almost all (95%) looked for information after seeing their child’s doctor and many (63%) did so beforehand.
Some parents, especially those aged under 45, used online parenting forums (29%) or social media such as Facebook (27%) for health information.
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Most parents (88%) who went online for health information before seeing the doctor wanted to prepare questions. Most (84%) wanted to find out what their child’s medical condition might be.
Of the parents who searched for information after seeing their child’s doctor, 94% wanted to know more about their child’s condition and 90% had more questions after thinking about what the doctor said.
Where to look
Only some parents (29%) believed the health information they found online was correct and just 61% understood it. Only a little more than half (57%) investigated to see if a website, app or Facebook group was trustworthy before accepting or using the information.
Most parents said they wanted help searching for (69%) and assessing (77%) the trustworthiness of online health information.
Parents can ask their child’s doctor to recommend a website so they can find out more about their child’s medical condition. And they can discuss with the doctor whether the online information they find is trustworthy and relevant.
Some online health information or advice from parenting forums may be untrustworthy, irrelevant to the child’s condition or incorrect. This can lead to misinformation, potentially harming the child and increasing parents’ anxiety and guilt.
When looking up health information online, parents can remember it’s more likely to be trustworthy if it’s on websites that are:
- aimed at consumers and funded or supported by state and federal health departments (raisingchildren.net.au and healthdirect)
- operated by public health institutions such as major teaching hospitals (The Sydney Children’s Hospitals Network and The Royal Children’s Hospital Melbourne), state and federal health departments (NSW Health), government organisations (Australian Broadcasting Corporation) and universities
- operated by not-for-profit charities, foundations and professional societies (National Asthma Council Australia and ReachOut)
- approved by reputable online health accrediting organisations (Health On the Net) or featuring their logo (Mayo Clinic).
Also look to see if the health information is:
- written by qualified health professionals
- based on evidence-based research or the work of an expert panel (it’s helpful if the website cites the source of its information)
- aimed at giving consumers information (such as Choosing Wisely Australia)
- balanced, unbiased and unemotional
- up to date, listing a recent revision date
- separated from advertising
- any funding is declared.
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The study was conducted by Griffith Medical School student Shruti Yardi while on a University of Sydney summer research scholarship in 2015.