Caught in the web – internet safety has a different meaning for children living with ill-health

The Police Community Clubs of Great Britain approached us this week to sponsor internet safety books for one of our local primary schools. We publish networking sites for people with long-term conditions so supporting internet safety and the responsible use of social networks is at the core of what we do.

Soon the children of Carlton Hill Primary School in Brighton will each get a copy Caught in the Web featuring the characters Barney and Echo. The story looks at cyber bullying and the dangers of arranging face-to-face meetings with “friends” you’ve met online. The book has stories, puzzles and games that deliver really sensible advice including the statement “telling people you don’t know your personal details is not a good idea.”

So if this kind of sharing is not a good idea for children generally what are the implications for children living with chronic health conditions? And how can children with long-term health conditions rate the information they seek online?

These are a really important questions at the forefront of our minds as we work with CICRA to develop new information materials for children and young people living with Crohn’s disease and ulcerative colitis (UC).

We are at the information gathering stage – we have spent two fun-filled, if exhausting, days with families and children living with the realities of inflammatory bowel disease (IBD). We have been asked questions ranging from: ‘why is my poo red?’ and ‘how does azathioprine work’ to ‘do doctors ever give you medicine that makes you worse?’ and ‘will I be able to have children?’

These were from the pre-teens and give an indication of how engaged even relatively young children are in their care.

We also have the results of almost 200 survey forms completed by children and parents. The answers reveal the extent to which the internet has become an essential tool both to find information about your health condition and to reach out to other parents or people living with IBD.


Dr Google

According to the initial results, parents are almost twice as likely to turn to the internet than their child’s doctor to answer a question about their disease. Children and young people also favour the internet, although their number one source of information is Mum and Dad (who may in turn be turning to Dr Google to find the answers).

According to Ofcom (2013 data) 91% of five 15 year olds use the internet. Estimated weekly volume internet use at home increased with the age of the child: six hours for five to seven year-olds, eight hours for eight to 11 year olds and 17 hours for 12 to 15 year-olds. If the upward trend has continued this figures will have increased.

So it’s unsurprising that when looking for information themselves children who replied to our survey overwhelmingly favour online and mobile over paper. One clued-up respondent say they looked for information on the internet, “though sometimes things on Google are false”.


Trusted information

And that is the key to the issue. How to educate children not just about their condition, but how to find reliable information about that condition? In the information era, how to evaluate the message becomes as vitally important as the message itself.

A substantial proportion of parents in our survey think the transition process, where children start to take responsibility for their own health, should begin between 12-14. One comments: “Many children with chronic illness are engaged and knowledgeable. The sooner they learn the easier it becomes part of life.”

So the lessons on finding reliable healthcare information online need to start early. There is no doubt that there is great information available online and it has enormous power to engage and educate.


Modulen March

In the office we are enjoying Modulen March, a video diary posted on You Tube by Paediatric IBD nurse Mick Cullen. He has stepped into his patients’ shoes and is living on liquid feed for a month. His diary is hugely entertaining and will resonate with children, who have been deprived of Easter or Christmas feasts while on the regime (Irish Mick endured a dry St Patrick’s night). First-hand experience is already sparking ideas in Mick’s mind about the new advice he will give to families when a child is prescribed the feed.

Mick’s diary is a cheap and immediate means to reach both patients and healthcare professionals and carries a really important message. It’s an example of a great online campaign in action from a really trustworthy source. One of our aims will be to give children a simple tool to rate online health information and the source that has generated it.

Then there is the advice from Barney and Echo about sharing information online. Social media can be a great way to meet people who have a health condition. But how many people do you want to know you have Crohn’s – is that something to share on Facebook? The #Belfie campaign (where people posted pictures of their stomas online to raise awareness of IBD) was a huge success. But would you want an under-18 to take part?


‘Coming out’

People with chronic conditions can face bullying in school and discrimination in the workplace so ‘coming out’ with a condition in your social media profile might need careful consideration.

Simple rules like keeping your Facebook profile private and limiting the personal information you post need to be communicated early. On our own websites members take a responsible posting pledge and can opt for a public or private profile, crucially they can switch between the two whenever they want, giving control to the user.

These issues and more will be addressed as we work with CICRA, young patients and parents to develop new information to meet the needs of the young people with Crohn’s and UC. What is clear is that internet safety has a different meaning for those living with a long-term condition and as health educators it is an issue we need to address.

Published on: March 18, 2016