1. Service Evaluation of sleep system provision: What factors help compliance, and what factors hinder compliance
Positive positioning microsystems team- Early years and community therapy team.
Sheffield Children’s NHS Foundation Trust
Background
Children and young people with limited movement and conditions that affect their muscle tone are at risk of changes to their body shape, such as changes in spinal position, shape of their rib cage, or their hip position. Changes to body shape can lead to other problems, such as difficulties with breathing, digestion, pressure areas, or pain, and at times corrective surgery is needed. Part of the role of the community therapy team includes working with children, young people and their families to encourage positive positioning. Positive positioning includes using things like bean bag supports, chairs with support, standing frames, and overnight positioning aids called sleep systems, all to help protect someone’s body shape (supported by the NICE guidelines for spasticity management in children and young people 2012).
Case study evidence shows that using sleep systems can help protect body shape, and even correct body shape where changes have already occurred (Goldsmith, Hill 2010). We were aware however, that, of all positive positioning equipment, sleep systems require the most effort and commitment from parents / guardians to implement. We wanted to find out what things helped the children, young people and families we work with to use sleep systems, and what made it hard, to see if there were any changes we needed to make to our service to better support their use.
What helped compliance?
Aim: Find out what factors support parental compliance on introduction and ongoing use of sleep systems, and what factors hinder this.
Objectives:
What we are doing as a service that works, and we need to do more of?
Is there anything we currently do that we need to stop doing?
Do we need to introduce anything new?
75% of respondents used the whole system every night all night, 17% used part of the system all night, and 8% used all of the system for part of the night, every night.
Systems were still successful when introduced in teenage years
91% of respondents rated the training they received on provision of the equipment as 3-5, where 1 is unhelpful, and 5 is very helpful.
75% felt they had had enough ongoing support.
In general, understanding why the system was in use and seeing results helped compliance.
Children and young people’s quality of sleep generally stayed the same or improved after introduction of the sleep system.
What we asked:
We sent out a questionnaire to all the families of children with GMFCS 4 and 5 cerebral palsy or equivalent on our caseload who had a sleep system at the time of the survey to find out parents views about:
Why their child was given a sleep system
Ease of use
How often it was used
How parents felt about the equipment
Sleep patterns pre / post provision
Usefulness of training
Support received post provision
What factors encouraged them to continue using the equipment
What advice would they would give to another family about to start using a sleep system
Quality of sleep before use of sleep system (parents report)
Quality of sleep with sleep system in use
What hindered compliance?
16% reported continence issues made the system difficult to use
50% stated they had had difficulties with temperature
33% stated they found the amount of time it took to use the system caused difficulties
25% of respondents felt they did not have enough ongoing support
Parents said…
I would recommend trying the sleep system. My child suffered a lot of discomfort pains and didn’t sleep well. I had to move position in the night, now I don’t have to. it is more of a bed time routine. it’s worth all the effort for your child. Has kept my child’s spine straight. Big thumbs up!
Benefits are long term so have patience. It has improved our situation dramatically.
What are we going to do about it?
Ongoing support needed: support families with problem solving, facilitate reflection to notice progress / effectiveness
Band 4 role supporting postural management in early years to continue
Clearer pathway of support for mainstream / special schools
Leaflet of problem solving ideas for common problems of continence and temperature regulation.
Understanding the rationale for it’s use is important. Its becoming second nature.
Try it out but persevere with it. Once the child gets used to it it can make a huge difference
Clare Lawson March 2019
2. Imms C, Reillly S, Carlin J, Dodd K (2008) Diversity of participation in children with cerebral palsy, Developmental Medicine and Child Neurology, 50:
1. Hoogsteen L, Woodgate R (2010) Can I play A Concept Analysis of Participation in Children with Disabilities, Physical and Occupational Therapy in Pediatrics, 30 (4):
References
3. Getz M, Hutzler Y, Vermeer A (2006) Effects of aquatic interventions in children with neuromotor impairments: a systematic review of the literature, Clinical Rehabilitation, 20: