Roald Dahl's Marvellous Childrens Charity

Marvellous Inventing Room

A place where amazing new creations are dreamed up and turned into reality by Marvellous healthcare professionals.

marvellous inventing room

We will soon be launching our next programme: We will be calling all Play Specialists at NHS Trusts where there is a Roald Dahl Nurse in post to apply to generate ideas for projects to try out a new idea to better support seriously ill children and young people.

2014-2017

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

Our aim through the Marvellous Inventing Room Programme was to improve the quality of care for seriously ill children and young people. The programme also helped to improve skills in leadership, research and project management for children's nurses.

The twelve selected projects ran 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 who led this study all have epilepsy and have gone through a transitioning process from child to adult health services. They worked 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 were asked to take a 'selfie' whilst injecting their clotting factor. These photographs alongside motivational messages were 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 used focus groups to see how having a platelet function disorder (PFD) affects children's lives. This information was 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 creatively explore what makes them happy. The findings were 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 was created in the heart of Helen House Children's Hospice. This wall is a large space for children to paint and draw on. The wall has also been photographed, shared on digital screens and on their website. The aim was 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 tested 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 now 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 is used to help children who can't communicate verbally express their needs, desires, likes, dislikes and preferences. The passport was rolled out to all children at the Jessie May Hospice at Home to enable them to test it thoroughly to see if it improved children's happiness, confidence and ability to connect with nursing staff with very positive results.

A Tablet-based, Interactive Biography for Children with Neurological conditions

Some children and young people on Ward 1B at the Great North Children's Hospital with complex neurological conditions were given a tablet. The tablet contained child-centred information, therapeutic games, fun apps and a child-based 'biography' showing key moments during the hospital stay. The tablet helped 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 piloted the use of a video app installed on a tablet so that this consultations could take place remotely. 

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

This project looked at how seriously ill children and young people and their parents can communicate their experiences of the health, education and social services. A tool was 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 need to have very painful injections and some children don't understand why. This project created a superhero kit, which includes a book, a cape and a doll that represents the main character in the book. Through the use of the toolkit, the children's understanding of their condition and their treatment is increased and thus it reduces their anxiety.

The dissemination of the Superhero Suzie toolkit is currently being developed.

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

During this project parents and children were interviewed and filmed at various points during a burns injury. The footage was 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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