Naomi Shefford-Thomas, CCLG Information Executive and mum to Phoebe, who underwent almost four years of treatment for neuroblastoma, answers your questions.
A childhood cancer diagnosis can leave you feeling shocked, scared and confused, with many questions running through your mind. Searching the internet is often the first place to start for quick and easy answers, but with a huge amount of information – some trustworthy and some not so – at a person’s fingertips, it can be overwhelming, and sometimes conflicting, causing even more worry and stress. Therefore, it’s important to make sure that health information is filtered and gathered from reliable, easy-to-understand sources.
Should I search online?
There’s no right or wrong answer to how parents might feel. Some parents want to avoid looking online for many different reasons. They may not want to be distracted or worried by information that doesn’t apply to their child or may not trust everything they read and are reassured that their child’s hospital team provides all the information needed. Other parents want further background and context to the information they already have and want to look for online support. It can, among other things, help them to:
• Feel more in control and better equipped to play an active part in their child’s treatment and care at home
• Gain knowledge and advice not only about childhood cancer, but also about living and coping with cancer at home
• Feel less lonely and isolated by reading other patient and family experiences
• Feel more confident in talking to doctors by asking the questions that they want to know the answers to
What are the dangers of searching online and what should I do?
It’s sometimes tempting to constantly search online about your child’s cancer, but this can become very consuming and distracting, and may add more worry and anxiety. Taking a break from going online for a day or two from time to time can be beneficial and many parents suggest that taking each hour and day as it comes rather than racing ahead is helpful. If you find yourself becoming overloaded, it’s a good idea to talk to your child’s doctor or nurse who will go through the information with you to make things clearer in your mind and more relevant to your child.
What should I keep in mind?
Things I watched out for were how recent the information is, whether the site was UK based and whether it was a trusted, well-known source. If I couldn’t tell I would try to avoid it. If you do find yourself down an internet rabbit hole, though, please try to speak to someone in your team to talk through what you’ve seen. In my experience, this has often helped to clear my mind and reassure me of the facts. Don’t be scared to ask questions rather than allowing doubts and worries to take over.
[Add link] Download our publication ‘Searching for information and support online’
From Contact magazine issue 93 - December 2021
