What was needed
Children learn to control their bodies by experimenting with movement. They are able to use that control to look, communicate and play. Children with severe dystonic cerebral palsy cannot sit independently, so they are placed in specialist seats that provide all the support they need. However, rigid seating prevents the child from experimenting with movement and learning how to control their own posture.
We looked at how to develop revolutionary chairs that move with children during spasms. We wanted to consider how they could give them relief from discomfort and, for the first time in their lives, the confidence and freedom they needed to sit independently.
Who could benefit
The main beneficiaries of this project were children with severe neurodisability who experience whole body spasms. The seat was also considered as able to help children with less severe disability who could benefit from the opportunity to explore and experiment with movement that that the seat affords them.
There are 2,200 children in the UK with dystonic cerebral palsy between the ages of 4 years and 11 years.
An estimated 184 infants are diagnosed with dystonic cerebral palsy born every year in the UK.
Design and development
We designed and built a series of prototypes between 2008 and 2012. The final prototype was evaluated at a school in London by a little boy called Tito who grew out of his seat in 2015.
We worked with two children, their parents, and their care team at school (physiotherapy, occupational therapy). They were consulted on the initial design, throughout the design process and were closely involved in the evaluation process.
What we found out:
- Children can learn to employ seat movements functionally.
- The dynamic seat seemed to improve hand and head function.
- The child was able to operate a switch in the dynamic seat, but could not do so in his static seat.
- Spasm force rises rapidly at a hard positional stop, but are blunted by a force limited stop.
- Limit spasms by force, not position.
- The dynamic seat reduced spasm forces.
- The child liked the seat, welcomed its arrival after modifications with a huge grin, and was disappointed when it was temporarily taken away.
- The child maintained a more symmetrical posture in the dynamic seat compared with the static seat. This is because the seat accommodated asymmetric spasms which do not then cause asymmetric postural displacements in the seat.
- The seat was designed to accommodate spasms in leg movement as much as possible, while reducing displacement of the head and shoulders. It is the head and shoulders that are the primary functional areas of the body in a seated child. The head is the focus for social interaction and learning through the ears and eyes. The seat should not disrupt eye-gaze or balance so as reduce disruption to the child’s activities and interactions. The shoulders provide a base for the arms and hands, which are the primary means by which the child interacts with the physical world.
- The seat has been fitted with a head switch so that he can operate a wide variety of devices. He did not have sufficient head control to operate a head switch while seated in his static seat.
We worked in partnership with a number of individuals and groups:
- Hortensia Gimeno from the Complex Movement Disorders Service at Evelina London Children’s Hospital.
- Dr. Kate Martin – A Consultant Paediatrician in Neurodisability at Community Child Health, Sirona Care and Health, Bath.
- A group of interested scientists and clinicians from the UK and Europe – they will hopefully use their expertise to support future research.
- James Leckey Design – we have a Memorandum of Understanding with Lauren Finney, Director of Research and Development at Leckey. We have signed a mutual NDA. Leckey has contributed in kind to the research.
- Vranch House – an Independent Day School in Exeter for children with significant physical difficulties.
This project is being funded by Action Medical Research, The Sir William Coxen Trust Fund, The Beatrice Laing Trust, The Bernard Lewis Family Charitable Trust, The Henry Smith Trust, Sir Jules Thorn Charitable Trust, The Barbara Ward Charitable Trust, The Wessex Youth Trust, Rooney Foundation, Sparks and other anonymous donors.