CHILDREN with chronic kidney disease can find out more about their treatment and the people who help them at Birmingham Children’s Hospital thanks to a new book.
My Kidney Journey was created by Get Better Books together with a multidisciplinary team from the hospital including renal nurses and play workers, to help children prepare for their kidney treatment journey.
Funded by Kidney Research UK, Quadrant Events Ltd and Birmingham Children’s Hospital Charity, the playful, interactive books show what to expect at the different stages of their kidney treatment using a fun approach to alleviate anxiety.
The children’s book is designed to encourage the recipients to colour, comment, write questions, draw and stick things in – creating important engagement so that the children and their families can explore the journey together.
There’s also information about transplant, dialysis, nutrition and dietary advice and importantly space for the children to write in about their feelings and any questions they want to ask their healthcare team.
Catriona Ryan, cystinosis/CKD clinical nurse specialist at Birmingham Children’s Hospital, said: “The book is fun, interactive and engaging. It’s the first of its kind to be produced and will support young children, giving them a voice and a way to process their thoughts and feelings in a way which makes sense to them.
“The whole nephrology team is really proud of My Kidney Journey and are thankful to Get Better Books and Kidney Research UK who together with our own charity, Birmingham Children’s Hospital Charity, have made it a reality.”
All young children with chronic kidney disease will receive their own copy of the book which comes with felt tips and a drawstring bag.
The book can be used by the children and their families to talk about treatments they may require for their kidney disease at different stages of their journey.
Chris Beyga, trusts manager from Kidney Research UK, said: “The children will often have been through a great deal in their short lives.
“The team at Get Better Books have worked closely with the fantastic clinical team at Birmingham including clinical nurse specialist Catriona Ryan.
“It has been a real collaborative effort to forge something really pertinent and special for children, siblings and their parents.”
Non-profit publishers Get Better Books have previously worked with Great Ormond Street Hospital and Alder Hey Children’s Hospital in Liverpool to create bespoke patient materials for children facing a range of clinical conditions.
