Having a child with a liver condition brings with it many complications. Apart from all the medical issues to contend with, parents understandably worry about how it will affect their child’s emotional wellbeing. This is something which has long been a priority for CLDF and one of the reasons we created Hive.
What is Hive?
Hive is our Facebook-based social network created by young people exclusively for young people with a liver condition or transplant. It consists of two groups – CLDF Hive is for 13 to 17 year olds and CLDF Hive+ is for those aged 18 – 24. Members of Hive can access peer support, share experiences and voice what matters to them when it comes to their liver journey. The pages are monitored by CLDF staff and our Hive Ambassadors to ensure safety for our members.
CLDF’s Young People Digital & Engagement Officer, Louise Hawkes explains:
“We know that because liver disease in young people is rare, it can be isolating and many young people, even those with a wide circle of friends, feel that those friends can’t really understand what it’s like to be in their position. Hive is a safe space for our young people to be open and honest and know that the people they are chatting to will have a relatable understanding.
“It’s also a format for sharing information. For example we have recently introduced a new section where employment, education and training opportunities are shared. Many of our young people miss out on a lot of school so additional courses can help them to build up their CV, and it’s great to get tips on this from their peers.”
Hive Hangouts
Virtual Hive Hangouts take place on a monthly basis where members can get together with each other and with the CLDF support team.
“Hangouts were a lifeline for our young people during lockdown but continue to be valuable now,” says Louise. “Our young people are spread throughout the UK, so knowing that they can catch up on a regular basis with others who completely understand and can help support them is really beneficial.”
Hannah* who is 14, admits that she was initially reluctant to join Hive:
“ I joined during lockdown when I joined in the Zoom calls doing activities like escape rooms and crafts. I have to be honest, I needed a lot of encouragement, seeing as I literally did not know anyone and it took me a while to participate and actually talk! I think the best thing about it is being able to talk to someone about your illness who truly understands and also making new friends that aren’t in school.
“To anyone who’s nervous about joining, I would say it’s a great way to learn more about yourself and even if you don’t want to talk at first you’ll love it after a while. Me myself I really didn’t want to join but now I’m really glad I did!”
Although young people cannot join Hive until they are 13, we do welcome children from nine to 12 on the Zoom Hive Hangouts. Our experience has shown that it’s around this age that they start to ask questions about their liver condition and how it might affect them, so seeing how others are getting can be very helpful.
Shelley was delighted with her 12 year old daughter’s reaction to joining in her first Hive Hangout:
“She was buzzing with excitement and said ‘I can’t believe I’m not alone’. I think I had underestimated the importance of her knowing that she is not the only child who has experienced life with a liver disease before during and after transplant,” she said.
“I would certainly recommend CLDF Hive to parents of other youngsters with a liver condition. It’s an easy and safe way they can connect with others in their situation without investing significant time or expense. And the feeling of understanding and belonging brings real benefits.”
It’s a view echoed by Nicky, whose 11 year old daughter looks forward to the monthly get togethers: “Holly enjoys them so much that she joined in one recently from her hospital bed, just after having an endoscopy. I think that says it all really!”
If you would like your teenager to join Hive or you have a 9 to 12 year old you feel would benefit from joining in a Hive Hangout email Louise at ypo@childliverdisease.org.
*Names have been changed
