An audit was undertaken in 2016-17 to evaluate the care delivered by Children’s Therapy Services for children and young people with cerebral palsy. The audit standards were constructed directly from NICE guideline CG145, Spasticity in under 19’s: Management (2012). Good practice was recognised with children receiving postural management programmes, orthotic intervention, active and passive stretching, however practice was inconsistent with fewer children receiving blocks (4-6 weeks) of targeted therapy and few children receiving progressive resistance strength training.
Following the audit a strength training group for children and young people with cerebral palsy was established by Lucy James, Hannah Marchant and Sarah Stangroom. Many barriers were overcome in setting this up, including staffing, appropriate clinical space and access to equipment and resources.
The group has been further developed through collaborative working with a Paediatric Counsellor within the trust, integrating her expertise and support into the group both for parents/carers and children. She has attended one session of the group with the children, and one session of the group with parents/carers. Recognising mental health problems and emotional difficulties in children with Cerebral Palsy is emphasised in Cerebral Palsy in under 25’s: assessment and management (NICE, 2017). This guideline states that up to 1 in 4 children and young people with cerebral palsy may experience emotional and behavioural difficulties such as low self-esteem, and that these issues can be as important as physical health problems for children and young people with cerebral palsy.
Aims and objectives
The aim of the strength training group was not only to strengthen muscles to improve posture and function, but to also provide an opportunity for children in mainstream education to socialise with other children who have cerebral palsy and to access support from the Paediatric Counsellor.
Section 1.2.13 of the NICE guidelines for Spasticity in Under 19s states ‘consider muscle-strengthening therapy where the assessment indicates that muscle weakness is contributing to loss of function or postural difficulties.’ We have therefore ensured that the child’s physiotherapist has identified areas of weakness which is contributing to loss of function / pain / postural deformities, which would then benefit from specific strength training.
Section 1.15.6 of the NICE guideline for Cerebral Palsy in under 25’s states ‘Think about and address the following contributory factors if a change in emotional state occurs in a child or young person with cerebral palsy:
- pain or discomfort (see section 1.13)
- frustration associated with communication difficulties
- social factors, such as a change in home circumstances or care provision.’
As stated above muscle strengthening therapy may improve musculoskeletal pain in children and young people with cerebral palsy, and pain may be a factor in any emotional difficulties they may be experiencing. The social context of the group and meeting other children with similar difficulties and making new friends may also support a child or young person’s emotional wellbeing.
Section 1.15.4 of the Nice Guideline for Cerebral Palsy in under 25’s states: ‘Recognise that emotional and behavioural difficulties (for example, low self-esteem) are reported in up to 1 in 4 children and young people with cerebral palsy.’ It continues in section 1.15.5 to state ‘Any multidisciplinary team should:
- recognise that mental health problems and emotional difficulties can be as important as physical health problems for children and young people with cerebral palsy
- explore such difficulties during consultations’
The collaborative working undertaken in this group with the Paediatric Counsellor supports implementation of this aspect of the guidance, as she was able to facilitate discussion and offer support for children and their parents/carers.
Section 1.2.14 of the NICE guidelines for Spasticity in Under 19s states ‘direct muscle-strengthening therapy towards specific goals using progressive repetitive exercises performed against resistance’. It is ensured that the children undertake progressive resistance training with the use of rucksacks containing weights. The weight used by each individual child is recorded for each specific exercise, and progressed through the 6 week duration of the programme once they have achieved 3 sets of 10 repetitions with that weight. The children participate in repetitive functional exercises in a circuit based format. These exercises include; heel raises, forward step ups, lateral step ups, half kneel to stand, sit to stands, and a static exercise bike. The children work for 2 minutes on each station, then rest for 2 minutes. The children work in pairs to encourage conversation and support amongst the group, and allow for an active role whilst resting i.e. counting the number of repetitions the other child completes. The number of repetitions is recorded on a sheet, which the child then takes home to complete two further sessions at home throughout the week. The physiotherapist leading the group informs parents/carers of how much weight the child should have in their rucksack, so that they can mimic this at home using water bottles.
Both of these NICE Guidelines clearly state that children and young people should receive child-focused, individualised care by a multidisciplinary team.
Reasons for implementing your project
The progressive strength training group was established as direct result of a clinical audit of Nice Guideline 145, as it was identified that although strengthening exercises were part of physiotherapy management for 94% of children, only 16 % of children had undertaken progressive repetitive exercises performed against resistance. This was much lower than our audit standard pass rate of 80%, and the strength training group presented an opportunity to implement this NICE recommendation in a cost effective manner.
It had also been recognised by therapists that many children and young people with cerebral palsy educated in mainstream schools do not know any other children with the same condition or similar difficulties, and some may experience emotional difficulties related to their physical impairments and difficulties participating in activities with their peers. It was also recognised that there may be limited opportunities for parents and careers of children with cerebral palsy to meet and offer each other support, aside from online social media platforms.
Prior to the establishment of this group, strength training was undertaken in one to one physiotherapy sessions, with exercises often given for completion at home or in school. As the exercises were completed independently without the direct guidance of a Physiotherapist, the exercises could not be tailored or progressed in line with the definition of progressive resistance strength training. If children or young people attended a block of weekly Physiotherapy sessions, strengthening exercises were often completed, however therapists did not make use of weighted backpacks.
Group strength training therapy has been well documented in literature as an effective way of implementing strength training for children and young people with cerebral palsy (Morton et al 2003; Damiano et al 2010).
It was considered that offering a one hour group session to 6 children, with one Physiotherapist and one Therapy Assistant would be an efficient use of staffing and space. As the group is suitable for school aged children, it was important the sessions could be run after school to minimise any impact on their education of attending frequent therapy appointments. The service does not have capacity both in staffing and space to offer one to one sessions for all children with cerebral palsy after school, so the group was a more productive method of delivering this intervention.
The group also ensured focused intervention, as during a one to one physiotherapy review there can often be several topics of discussion around orthotics, school, home exercise programmes, onward referals and current functional difficulties. Within the group time can be spent completing specific exercises and therapist attention can be focused on tailoring and progressing the exercises for each individual child. The group also promoted compliance with exercise completed at home, adding to the benefit for each child.
Involvement of the Trust’s Paediatric Counsellor also ensured efficiency through enabling timely access to her support, and reducing the number of referrals made on to her service.
Progressive resistance strength training is shown to improve the gait, function and mobility of children and young people with cerebral palsy. Strength training is also shown to improve muscle length and reduce the risk of secondary complications such as muscle contracture. This is therefore a cost effective intervention through preventing secondary complications, and the need for more costly Orthopaedic surgery or botulinum toxin injections.
It is also well documented that children and young people with cerebral palsy are more sedentary and do not undertake as much regular physical exercise as typically developing peers. This group therefore also serves the purpose of promoting physical activity in this population and improving self-efficacy, so young people with cerebral palsy are more likely to undertake exercise and live healthy lifestyles in adulthood, maximizing their independence and minimising their potential future reliance on healthcare resources.
The current population of children with cerebral palsy within our service and attending mainstream schools or pre-schools is 93. We identified approximately 40 children within the local population who would potentially benefit from attending the strength training group.
How did you implement the project
The team discussed the audit results and an article published in the Association of Paediatric Chartered Physiotherapists journal regarding a pilot strength training group that had been conducted in another Trust. We decided to complete a trial group for 6 weeks, with children with cerebral palsy of Gross Motor Function Classification (GMFCS) levels I-II.
Staffing and space available were reviewed to establish the best day of the week and time to run the group. Therapists were encouraged to discuss the group with children/young people and their parents/carers and to make a referral to the group if interest was expressed. Referral was simple with a spreadsheet waiting list all therapists could access.
Validated Outcome measures including the Gross Motor Function Measure (GMFM) standing component (Sections D), Timed Up and Go and Sit to Stands in 30 seconds were completed with each child prior to and following completion of the group. Following the initial trial group, improvements were seen in the outcome measures for each child. As the group was successful it was continued with subsequent groups organised once sufficient numbers of children had been referred. Due to the significant benefits seen and need to ensure adequate numbers, children could be re-referred to the group indefinitely.
Parents / carers remained on site whilst children were in their group sessions, in an adjacent room. Space constraints limited opportunity for parents/carers to be present in the same room.
Child and parent/carer feedback was gathered at the last session of each group, to inform any changes that were made and to ensure their satisfaction. Feedback was consistently positive and reiterated the benefits of running a group for these children.
Following the initial trial, 3 subsequent blocks of 6 weeks were completed. The Paediatric Counsellor attended the 1st and 3rd sessions of the most recent block.
It was identified that some new equipment was required to ensure patient safety and availability of appropriate weights. The service therefore purchased new Paediatric parallel bars, and a set of 0.5 – 2kg dumbbell weights. These new resources have been of benefit to the service as they can now be used within children’s one to one physiotherapy sessions.
Challenges were met when children in the group were of a lower functional ability than others, however exercises were adapted to ensure the child could perform them as safely and independently as possible. For example, one child was unable to perform standing heel raises, so completed ankle plantarflexion with resistance band instead.
It has also been challenging to complete the outcome measures for each child during the first and last sessions of the group, due to the staffing available and need to manage the other children in the group. It is planned that going forwards outcome measures will be completed to prior to and following the group by the child’s Physiotherapist in a one to one session.
The Gross Motor Function Measure section D was only completed during the first trial group, due to the time consuming nature of these. As above this outcome measure may be used during one to one sessions to highlight a child’s precise functional level and to identify improvements and changes both in the short and long term.
Attendance to the group was variable; however use of home exercise sheets which were filled in between sessions proved beneficial in maximising compliance and commitment to the exercise programme.
The team completed this project within their existing resources, with the intention of resource savings, as they reasoned that seeing children in a group setting with up to 6 children and 2 members of staff would be a more efficient way of delivering progressive strength training compared to individual 1:1 sessions. One session in the group setting required 0.3 therapist hours per child, compared to 1 therapist hour per child for individual sessions. The actual cost saving was not formally measured, and there were limitations to the cost saving of the group due to attendance, and as some children requiring more direct support within the group may have benefitted more from individual therapy sessions. In theory, a progressive strength traing group attended to full capacity who are the necesary functional level, would be a cost-saving intervention.
Although a repeat audit has not yet been completed, feedback gathered from children and parents/carers has been overwhelmingly positive, both in terms of the physical benefit and social aspects of meeting and engaging with other children that have cerebral palsy.
Objective improvements have also been seen in the outcome measures completed. In the first group, all children improved by at least one second in the Timed Up and Go test and by 4 points in the standing component (section D) of the Gross Motor Function Measure.
Key learning points
The group has been successful however there have been challenges in running the group with mixed ages and abilities, as some children required more one to one support to be able to complete the exercises, and some children required more support to maintain their focus on the tasks. Going forward we are exploring the possibility of running two groups, one for children aged 6-11, and one for children aged 12-15. It may also be of benefit for parents to be present in the class so that they can become more familiar with their child’s exercises for effective completion of these at home. The presence of the Paediatric counsellor in the first session of the group facilitated discussion and formation of relationships between the children, potentially improving their engagement with each other in the subsequent sessions.