Roald Dahl's Marvellous Childrens Charity

Marvellous Nurse Inventing Room

A place where amazing new creations are dreamed up and turned into reality by Marvellous nurses

Nurse and children illustration

Thanks to support from our friends at the Burdett Trust for Nursing, Roald Dahl's Marvellous Children's Charity is able to support innovative nurse-led research projects.

Our aim through the Marvellous Nurse Inventing Room is to improve the quality of care for seriously ill children and young people. The programme also helps to improve skills in leadership, research and project management for nurses.

We have selected twelve projects to enter the Marvellous Nurse Inventing room, which will run for three years. Below you can read a synopsis of each project.

 "Get Ready ‘Cos Here We Come!”

A Youth-led Project to Improve Transition in Epilepsy Services  

The young people leading this study all have epilepsy and have gone through a transitioning process from child to adult health services. They will work together to create an animation, a film, a booklet or an app to help other young people with epilepsy who will go through this transition process in the future. Watch the film.

"Haemophilia Selfies" Empowering Boys 

A group of young boys with haemophilia will be asked to take a 'selfie' whilst injecting their clotting factor. These photographs alongside motivational messages will be added to a closed Facebook group, with the aim of encouraging other young boys to be proud of and gain confidence in self injecting. 

Study Of Living with a platelet Function disorder (SO-LIFE)

This project will use focus groups to see how having a platelet function disorder (PFD) affects children's lives. This information will be used to create a series of film clips for those affected by PFD, including the children and the health professionals.

Investing in Happiness

A group of young people aged between seven and eleven with rare diseases will creatively explore what makes them happy. The findings will be used to test out the idea of using a 'happiness bank or box' to help the young people with rare diseases build resilience.

“Our Living Wall”: Art, Inspiration, Connection and Fun

A living wall will be created in the heart of Helen House Children's Hospice. This wall will be a large space for children to paint and draw on. Once completed, the wall will be photographed and shared on digital screens and on their website. The aim is to help the children accept who they are and give them an opportunity to take ownership of their environment.

Piloting, Validating and Using a Patient Reported Experience Measure (PREM) for Sickle Cell Disease  

This project will test a questionnaire looking at patient reported experiences to assess the services provided to children and young people with sickle cell disease. Once tested this questionnaire can be used by other sickle cell healthcare providers to test patients' experiences of services.

Voice of the Child – testing the Communications Passport

A communications passport can be used to help children who can't communicate verbally express their needs, desires, likes, dislikes and preferences. The passport will be rolled out to all children at the Jessie May Hospice. This will enable them to test it thoroughly to see if it improved children's happiness, confidence and ability to connect with nursing staff.

A Tablet-based, Interactive Biography for Neurologically Disabled Children

Children and young people on Ward 1B at the Great North Children's Hospital with complex neurological disabilities will be given a tablet. The tablet will contain child-centred information, therapeutic games, fun apps and a child-based 'biography' showing key moments during the hospital stay. The tablet should help children, their parents and the professionals share and understand the child's experiences of being in hospital. 

CATS: Children and Adolescents Telehealth in Sickle Cell Disease 

Home visits help children and young people with sickle cell disease manage their pain before it becomes serious. As home visits are very time consuming for the health professionals, this project will pilot the use of a video app installed on a tablet so that this consultations can take place remotely. 

Creating a Family Participation Assessment Tool Across Health, Education and Social Services   

This project will look at how seriously ill children and young people and their parents can communicate their experiences of the health, education and social services. A tool will be created to allow these families to express their views so that the services can be held accountable for their level of engagement. 

The Superhero Kit 

Children with juvenile arthritis have to have very painful injections and some children don't understand why. This project will create a superhero kit, which will include a book, a cape and a doll that represents the main character in the book. The children are only allowed to wear the cape during the injections when they will become a superhero.

A Road Less Travelled: mapping children's and families emotional journey following moderate to severe  burns

During this project parents and children will be interviewed and filmed at various points during a burns injury. This will be used to create a short film about the emotional journey that children and their families go through after a moderate to severe burn. 

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