New book helps families talk about kidney disease with young children

Children whose relatives have kidney disease will have a better understanding of the condition thanks to a new book published by Guy’s and St Thomas’ NHS Foundation Trust.

The Little Book About Kidneys has been designed for young children and aims to help parents and relatives explain to them what kidney disease is, how it affects them and how it is treated. It has been funded by Guy’s and St Thomas’ Kidney Patients’ Association.

The colourful illustrated book uses the character of Dougal the dog to guide children through the pages, telling them in simple terms what kidneys do and what happens if they do not work properly, how kidney disease can make people feel and provides simple information about dialysis and transplantation.

More than three million people are thought to be living with kidney disease in the UK.

Victoria Hanson, clinical nurse specialist in kidney care, wrote the book with help and advice from a child psychologist, play therapist and other colleagues from Evelina London Children’s Hospital, which is part of Guy’s and St Thomas’ NHS Foundation Trust, to make sure young children would find it interesting, accessible and informative without worrying them. She also sought feedback on the book from children of parents living with kidney disease.

Victoria said: “The idea to make the book started after a patient told me she was finding it hard to tell her children about her kidney disease and we realised there weren’t any books which explained it to children. The Little Book About Kidneys was inspired by Mummy’s Lump, a book written for children of women with breast cancer.

“Living with kidney disease and kidney failure can be stressful and worrying, and some patients find it daunting discussing the condition and treatments with young children. We hope that this book will help children to understand more about what is happening.”

Carly Anderson, a mother-of-three from Eltham in South-East London, is on the waiting list to receive a kidney and pancreas transplant. She was diagnosed with type 1 diabetes aged 13 which led to kidney problems and she now has kidney failure.

Carly, 36, said: “I thought the book was very well illustrated and informative and my four and five-year-old daughters, Billie and Jessie, enjoyed reading it. It helped them understand what I’m going through a bit more. It’s important that they understand about my kidney disease because it impacts me a lot and can take a toll on the family. I have good and bad days but sometimes I feel very tired and unwell.”

Carly, who also has a 13-year-old daughter Ellie, added: “The book is a very good idea and I think it will help other families with young children. It will help my younger children to understand more about what will happen when I have my transplant and what I’ll be like as I recover.”

A spokesperson from Guy’s and St Thomas’ Kidney Patients’ Association said: “Chronic kidney disease is life-long, affecting the patient, their family and people they are close to. Recognising the needs of children to understand ill health alleviates fear and uncertainty, and provides basic information.  Guy's and St Thomas' Kidney Patients' Association is delighted with this publication, which will help parents and carers explain kidney disease to young children.”

The book is available free of charge for Guy’s and St Thomas’ kidney patients.