Developing a head and neck stabilising aid for children with narcolepsy when travelling in the car
Narcolepsy is a disabling sleep disorder characterised by excessive daytime sleepiness and muscle weakness precipitated by strong emotions, known as cataplexy. Children and young people (CYP) with narcolepsy inevitably fall asleep on car journeys and the loss of head control can cause significant parental anxiety as well as pain and discomfort for CYP. There is currently no available, effective support for these CYP.
The Sheffield Children’s Sleep Team worked together with designers and researchers from Lab4Living (Sheffield Hallam University), CYP with narcolepsy, and their families to explore this unmet need further. Families were at the centre of each stage of the project, and a suite of 9 prototypes were developed through a series of co-design workshops. The prototypes were designed to be fully functional and incorporated a range of innovative methods of providing head, neck, and upper body support, whilst also considering comfort, safety, acceptability, durability, aesthetics, and potential stigma. Early feedback from families has been positive and indicated that several of the prototypes warrant further development.
STAGE OF DEVELOPMENT BEFORE WORKING WITH NIHR CYP MEDTECH
SUPPORT PROVIDED BY NIHR CYP MEDTECH
NIHR CYP MedTech facilitated an introduction between The Sheffield Children’s Sleep Team and Lab4Living, a design-led research department at Sheffield Hallam University.
NIHR CYP MedTech supported the project team by identifying relevant funding calls and co-authoring grant applications.
NIHR CYP MedTech are providing day-to-day management of the project and associated co-design activities.
The team are continuing co-design work with CYP and families, and are seeking next stage funding to develop the prototypes further.
This project addresses a significant problem for a generally underserved community of CYP and families. The continued engagement of families throughout the project has ensured the prototypes developed are built on rich understandings of the day-to-day impacts of travelling in the car for CYP with narcolepsy and/or cataplexy, and responds to these challenges sensitively and practically. The continued buy-in from families and clinicians involved in the project highlights the importance of addressing this issue.
This project has been presented at several conferences, including:
- Child Health Technology 2021
- British Sleep Society 2019
- Royal College of Paediatrics and Child Health 2019
This project received Medical Research Council ‘Confident in Concept’ funding to take the project from initial idea to early prototypes. The project team are currently applying for further funding to continue the development of the prototype head and neck supports.
Last updated: 18 May 2022