Functional seating for children with whole body extensor spasms
We’re developing revolutionary chairs that move with children during spasms. It will give them relief from discomfort and, for the first time in their lives, the confidence and freedom they need to sit independently.
Any product resulting from this research would benefit children across the world and not just in the UK.
We’re working 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.
What is the need?
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.
Who will the project benefit?
The main beneficiaries of this project will be children with severe neurodisability who experience whole body spasms. The seat may also help children with less severe disability who may benefit from the opportunity to explore and experiment with movement that that the seat affords them.
The age range of those affected
Children are affected from birth and throughout their lives. The impact of Cerebral Palsy can increase with age as joint mobility reduces and permanent abnormal posture develops. Though not directly life limiting, CP often results in complications in other aspects of health. Only half of children with severe cerebral palsy reach the age of 20 years.
Total number of children (up to age 12) affected by dystonic cerebral palsy in the UK
There are 2,200 children in the UK with dystonic cerebral palsy between the ages of 4 years and 11 years.
Westbom et al found prevalence to be 0.2/1000 in children between 4 and 11y.This is a value scaled for the UK population from Swedish data. Sweden has similar or better health provision when compared with the UK. Specific UK data for dystonic CP (rather than the larger group with dyskinetic CP) could not be found.
The prevalence of children with the most severe disability due to cerebral palsy, scoring V on the Gross Motor Function Classification Scale, was 0.4/1000 in children aged 4-11y. This equates to about 4,400 children in the UK.
Ref: L Westbom, G Hagglund and E Nordmark, “Cerebral palsy in a total population of 4–11 year olds in southern Sweden, Prevalence and distribution according to different CP classification systems.” BMC Pediatrics, v7 n41, 2007.
Annual number of new cases (in the UK):
The birth rate for children with dystonic cerebral palsy is 0.27/1000 births (in Sweden).
Ref: K Himmelmann, G Hagberg, L M Wiklund, M N Eek, P Uvebrant, “Dyskinetic cerebral palsy: a population based study of children born between 1991 and 1998”, Dev. Med. & Child Neuro, 49:246-251, 2007.
This scales to 184 infants with Dystonic Cerebral Palsy born every year in the UK.
10% of 22-25 week births have severe neuromotor disability
Ref: Nicholas S. Wood, Neil Marlow, Kate Costeloe, Alan T. Gibson, Andrew R. Wilkinson, “Neurologic and Developmental Disability after Extremely Preterm Birth”, N Engl J Med 2000; 343:378-384, August 10, 2000
This scales to 898 children with severe neuromotor disability born in the UK per year. Not all will survive the neonatal period. Other children not born at 22-25 weeks gestation will also acquire severe neuromotor disability.
It should be noted that any seat product resulting from this research would benefit children across the world and not just in the UK.
What is our role?
Our role is to lead and coordinate the project, raise funds, ensure that the research complies with regulations on ethics and carry out research, design and technology evaluation.
Prototypes – 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.
User Involvement – we have 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.
Findings from the project so far are:
- Children can learn to employ seat movements functionally.
- The dynamic seat seems 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 accommodates 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.
Presentations and publications
T. Adlam, R. Orpwood, A. Wisbeach, “Experiences and Research into Dynamic Seating for People with Severe Extensor Spasms”, Ann. Conf. Posture and Mobility Group, University of the West of England, July 2013.
T. Adlam, E. Johnson, R. Orpwood, A. Wisbeach, “A Seat for Children that Cannot Sit”, North East Regional Orthotics Conference: Equality of Care for Cerebral Palsy, University of Newcastle, 12th January 2013.
T. Adlam, H. Alger, A. Wisbeach, R. Orpwood, “Soft and Semi-Soft Prototyping in Assistive Technology Research: Reducing the Human Unknowns Without Costly Manufacture”, Rehabilitation Engineering and Assistive Technology Society of North America (RESNA), Toronto, Canada, June 5 – 8, 2011.
Adlam T., Orpwood R., Wisbeach A., “Supporting Independence and Inclusion: Compliant Seating for Children with Cerebral Palsy and Whole Body Extensor Spasms”, in “Assistive Technology From Adaptive Equipment to Inclusive Environments”, eds: Emiliani P, Burzagli L, Como A, Gabbanini F, Salminen A, IOS Press, Amsterdam, Sept. 2009.
Adlam T., Orpwood R., Wisbeach A., “Design Considerations in Compliant Seating for Children with Whole Body Extensor Spasms” ,RAATE Conference, Coventry University, December 2008.
Adlam T., Orpwood R., Wisbeach A., “A compliant seat for a child with dystonic cerebral palsy and whole body extensor spasms”, Ann. Conf. IPEM, Bath, September 2008.
Project Lead: Dr Tim Adlam
For more information please contact Dr Tim Adlam firstname.lastname@example.org 01225 824103
Last updated 07.10.16