NEW RECOMMENDATIONS AIM TO IMPROVE THE PHYSICAL FUNCTION OF CHILDREN AND YOUNG PEOPLE WITH CEREBRAL

New International Clinical Practice guidelines for the treatment of children with cerebral palsy have been drawn up by an expert panel of researchers including The University of Queensland and Cerebral Palsy Alliance.

With so many different therapy interventions available, it can be difficult for both parents and children to navigate through them all. What works for some, might not work for others. As a mother of twin boys with cerebral palsy (CP), CPSN's telehealth nurse Amy Seeary has learnt very quickly that when her boys enjoy their therapy and are having fun, they achieve their goals a lot quicker.

Last week, 13 recommendations were published to improve the physical function of children and young people with cerebral palsy. It was led by a team of researchers at the Cerebral Palsy and Rehabilitation Research Centre, located at the University of Queensland, along with other health professionals across Australia.

The expert panel assessed evidence and consulted with international stakeholders including parents and consumers along with clinicians and researchers. The result was 13 recommendations for guiding care and practice for the treatment of children with cerebral palsy.

In the research article, the University of Queensland states that fact sheets would be used as a way of promoting the recommendations to allied health professionals and other specialist health professionals involved in the care of children with CP.

Amy says she looks forward to seeing these resources and hopes that the distribution of fact sheets will also reach families and children. "We need to empower our children and our families to make decisions for treatment and care based on the best evidence available. This is vital to improving outcomes, independence and choice. All the while reinforcing what us parents already know: the best therapy is therapy that our child wants to do. Therapy that directly relates to their goals, that is motivating and above all, is fun!" 

Amy recommends all parents of children with cerebral palsy, to check the following recommendations out.

Recommendation 1: Client-chosen goals should be set 

The first recommendation should have always been the gold standard for working with families and children. Goals should be set by the child, or if the child is unable to, they should be set by their family or carers. We know that putting the child’s goals at the forefront improves motivation and their achievements.

• ​Intervention should always begin with understanding the child’s functional goals. If the child is unable to identify their own goals, families should be engaged to set goals considering the child’s preferences and interests.

• Goals should be functional, well defined, achievable, and measurable." 

• Goals should be incremented according to the child’s level of ability and progress.

• A written copy of the goals should be provided to the child/family.

• Goal performance should be measured at the beginning and completion of the intervention. 

Recommendation 2: Clinicians should determine the factors that are limiting goal achievement 

The second recommendation talks about how you need to identify barriers and create a plan to manage them in achieving the goals of your child.

​Clinicians should observe the child carrying out the task/goal to determine the specific skills or barriers that are limiting goal achievement.

Recommendation 3: Intervention should directly target the child’s chosen goals 

Recommendation 3 links with the first recommendation. You and your child should lead goal decision-making, and then the practitioner should be helping you to design interventions which directly focus on these goals that you and your child want to achieve.

• ​Intervention should involve active practice of the goal. Clinicians should use a ‘hands-off’ approach as much as possible, providing opportunities for the child to actively and independently practice the task they wish to achieve.

• Clinicians can assist children and young people by encouraging child-led problem-solving, identifying where task achievement is unsuccessful, and providing feedback on how task performance can be improved. 

• If the goal is broken down into part-task practice, intervention should be followed by whole-task practice of the goal once the child is ready to do so.

Recommendation 4: Intervention should be enjoyable and motivating for the child 

"Intervention should be enjoyable and motivating for the child. I really resonate with this. As parents, we know that this is the key to achieving goals."

​If the child is crying or distressed, the clinician should stop, comfort the child, and change the intervention to match the child’s ability, needs, and preferences.

Recommendation 5: Practice of goals should occur within the child’s home or community environments 

The fifth recommendation highlights how important that the practice be in our homes or a community setting that your child is very familiar with. Research evidence has continuously shown the benefits of this over traditional ‘clinic’ settings.

• ​Functional training is maximised by considering the context of practice. Achievement of the goal is more likely to be carried over into everyday life if it is practised within everyday environments, such as the child’s home or community.

• When this is not possible, practice should occur within an environment that simulates real-life as much as possible.

• Recommendations for practice at home should be given in written or visual formats.

Recommendation 6: Parent-delivered intervention is a key component of all intervention 

"One of the first things I realised with my boys’ therapies, was that a lot of it centres around parent education so that the interventions can be practiced more at home. This can be really hard to fit in to our busy schedules. I found having a conversation with their therapists and working out where we could fit them in to their usual schedule and daily activities, worked the best. So for example when my boys are sitting watching the tv, I can sit down with them and do a bit of standing practice. We can even integrate fine motor activities at meal times too. Support workers can be great to assist with therapy practice too!"

Clinicians should help you with the following: 

• ​Education, coaching, and information to support caregivers to be actively engaged in the intervention, including encouraging autonomy, problem-solving, and task specific practice of goals.

• A structured home programme, which involves practice of the child’s chosen goals. 

• Ongoing review as well as child and family support.

Recommendation 7: Children and young people and parents should remain the decision-makers throughout 

"It is good to see this recommendation being acknowledged. When we recognise that we as parents and our children ultimately know what is best for us. What therapy is working, what isn’t, and what they would like to try."

• ​Clinicians have a responsibility to provide families with up-to-date evidence, to enable them to make informed decisions about the best intervention for their child.

• Parental engagement is a key factor in the success of an intervention.

• Intervention recommendations should be tailored to match the child’s functional ability and potential." 

• Timing and content of interventions should consider individual factors, such as age, ability level, resources, and individual child and family preferences.

• Only feasible, acceptable, and effective interventions should be recommended and/or performed.

Recommendation 8: A high enough dose of practice needs to be undertaken to achieve functional goals 

This links with recommendation 6 and that in order to achieve goals, practice is needed. Sometimes A LOT of practice.

"I often find this overwhelming. However, as I mentioned weaving practice in to the usual daily routine is helpful, and having support workers take on some of the practice along with family and friends. A grandparent holding one of my boys to stand is ticking off some of the standing time and practice they need to do. Something I have learnt though is be kind to yourself, do as much as you can but we can’t do it all."

• ​Clinicians should consider how an optimum dose can be achieved when planning intervention, including face-to-face therapy and home practice.

• The optimum dose may vary depending on the child, the complexity of the goal, the type of intervention chosen, and context/resources.

Recommendation 9: A team approach should be used to set goals and the intervention regimens 

We all know the team of a child with CP is made of many. Getting your child’s team to communicate with each other often is the key here.

​A team approach (including the child and family as team members) to setting goals and making decisions about intervention regimens can streamline services and prevent overburdening of families.

Recommendations 10 to 13 below are ‘Evidence based recommendations’. These summarise evidence-based guidelines for the treatment of gross motor function and mobility, hand use in functional activities, self-care and leisure. Each of these discuss evidence-based interventions and methods of improving participation.

"There are so many different interventions for children with CP, we have tried many-conductive education, home therapy, clinic therapy, thera suit, intensive therapy, and more recently, video modelling. Evidence can be limited for some of these therapies. So I say if it is fun and your child is benefiting, go with your intuition. A few therapies have been found to have negative impacts so it is important to go with evidence and professional recommendations. However, this can be balanced with your own intuition."

Recommendation 10: Mobility

​To improve mobility in children and young people with CP (GMFCS I–IV, all motor subtypes) we recommend mobility training using a goal-directed approach, with a focus of practice within a real-life context, compared with no intervention.

10.1 Walking speed and endurance 

​To improve walking speed and endurance in children and young people with CP, we suggest overground training (with or without a walker) (GMFCS I–IV), treadmill training (GMFCS I–III), and HABIT-ILE (GMFCS I–IV), compared with no intervention OR body functions and structure intervention. 

10.2 Gross motor function 

• ​To improve functional mobility goals and balance in children and young people with CP, we suggest goal-directed training (GMFCS I–III) and HABIT-ILE (GMFCS I–IV), compared with no intervention OR body functions and structure intervention.

• To improve gross motor function in children and young people with CP (GMFCS I–IV), we suggest either altering environmental factors (e.g. ‘context focused’) OR child-focused therapy (i.e. treatments that alter child-related factors). We suggest clinicians consider the child’s age, ability, and child/family preferences and tolerance of adjunctive interventions when selecting interventions.

Recommendation 11: Hand use 

• ​To improve goal achievement in hand use in children and young people with CP (MACS I–IV, all motor subtypes), we recommend a goal-directed or task-specific approach, compared with no intervention OR body functions and structure intervention.

• To achieve functional upper-limb goals in children and young people with unilateral CP, we recommend CIMT, bimanual therapy/HABIT (MACS I–III), and we suggest CO-OP and HABIT-ILE (MACS I–IV) compared with no intervention OR body functions and structure intervention.

• To achieve functional hand use goals in children and young people with bilateral CP, we suggest HABIT/HABIT-ILE (MACS I–III) and CO-OP (MACS I–IV) compared with no intervention OR body functions and structure intervention.

• To improve hand use in children and young people with CP classified in MACS level IV (unilateral or bilateral), we suggest a goal-directed focus plus environmental adaptations and equipment/assistive technology to maximise independence, compared with no intervention OR no equipment/assistive technology OR body functions and structure intervention. 

• We suggest clinicians consider the child’s age, ability, context/resources, and child/family preferences and tolerance of adjunctive interventions when selecting interventions.

Recommendation 12: Self-care

• ​To improve self-care goal achievement in children and young people with CP (all motor types and severities), we recommend a goal-directed and task-specific approach (for skills development) plus adaptive equipment (for safe, timely independence), compared with no intervention.

• To improve self-care skills in children and young people with CP (GMFCS I–IV, all motor types), we recommend goal-directed training, CO-OP, and HABIT, compared with no intervention or body functions and structure intervention, and we suggest HABIT-ILE (GMFCS I–IV, all motor types).

• To improve independence, safety, and decrease caregiver burden during self-care tasks for children and young people with CP (GMFCS IV and V, all motor types), we suggest adaptive equipment.

Recommendation 13: Leisure

​To improve performance of a leisure activity in children and young people with CP, we suggest clinicians combine goal-directed approaches (CO-OP, goal-direct training, HABIT-ILE for GMFCS I–IV; and goal-directed training for GMFCS V) with a focus on supporting the individual to overcome environmental, personal, and social factors that may limit participation, compared with no intervention or body functions and structure intervention.

To access the full research paper, click here.

Amy Seeary is CPSN’s Telehealth Nurse. If you have any questions for Amy, or would like to book a Telehealth appointment, you can contact her on 9478 1001 or email cpsn@cpsn.org.au