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 our support staff and our Hive Ambassadors to ensure safety for our members.
Head of Children and Families’ Services, Michelle Wilkins, 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.”
Hive Hangouts
Virtual Hive Hangouts take place on a monthly basis where members can get together with each other and with the support team.
“Hangouts began during lockdown when our young people were very restricted in who they could meet face to face,” explains Michelle. “But they are just as valuable now as 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.”
One of our Hive members, who is 15, agrees:
“My diagnosis came very much out of the blue and for the first year, I didn’t have much involvement with Hive as I tried to pretend and convince myself that I didn’t have liver disease and that it didn’t have an impact on my life when it definitely did. Joining Hive helped me accept my disease, but also helped me realise that other people are in the same boat as me.”
Although young people cannot join Hive until they are 13, we do welcome children from the age of 11 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 daughter’s reaction to joining in her first Hive Hangout when she was 12:
“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 14 year old daughter looks forward to the monthly get togethers: “Holly enjoys them so much that she has even joined in from her hospital bed! I think that says it all really.”
We welcome young people from 11 – 17 at our monthly Hive Hangouts. If you would like to join in, just email youngpeople@childliverdisease.org.
Of course, there are some issues which people prefer to discuss on a one to one basis and if this is the case and you are aged 11 – 24, email the above address to arrange a chat.
