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Exercises 1 - Why do exercises?

The three main modes of treatment
The use of a complex variety of medicines, daily exercises and splints together form the key modes of treating juvenile arthritis. Each of these brings their own challenges for the family, and means different healthcare professionals become involved in your family. The ideal would be that this wide range of people would work closely together and give consistent advice, despite working from different clinics or hospitals. The reality is that despite agreeing broad aims of treatment, advice from healthcare professionals about how to deliver treatment is often conflicting, confused or absent.

This section can only offer general guidance from the parents' perspective. You must also seek individual advice for your child from your team of professionals. Always follow the instructions given by your doctor, and if in doubt, don't hesitate to ask for further explanations.

Why should children with arthritis do exercises? 
Children with arthritis need to do general and specific exercises because:-

• They help children maintain a better range of joint movement and joint mobility.
• They help prevent deformities.
• They help improve muscle stamina, strength and suppleness so that as the child grows their joints continue to mature in correct alignment with each other.
• They help build up bone density and strength which is especially important while the skeleton is developing and to counteract osteoporosis.
• It helps the child keep a fit and healthy heart, lung, digestive and other body systems.
• They increase energy levels and improve sleep patterns.
• They can be enjoyable, sociable and confidence building.

Current dilemmas for exercises at home

A daily routine of exercises can make a big difference in maintaining movement and in preventing joint contractures (when the joints get fixed in one position). In specialist physiotherapy departments Physiotherapists have been able to work daily with children with contractures and after some weeks help the child regain normal movement. Specialist physiotherapists have developed expertise in helping children with severe arthritis and their families over many years.

In America, Canada and the United Kingdom there is a tradition going back more than thirty years of prescribing an aggressive programme of daily exercises for families to complete at home. However, there is little research evidence validating different ways to help families deliver an effective exercise programme in the long term. While working in a well equipped hospital physiotherapy gym, Physiotherapists have the advantages of knowledge, authority, equipment, space, their uniform, and one-to-one attention, and perhaps the group pressure from the presence of other children undertaking the same routine at the same time.

At home, the situation is utterly different, and in order to succeed parents need extra training, support and assistance.

The 2001 Brighton study examined in detail many of the difficulties reported by families which were in keeping with those reported in other contemporary and earlier studies. The findings from these studies indicated that many families soon stop trying to do the exercises, while others invest considerable time, energy and effort to do them but their efforts are rarely monitored by therapists. Therefore the exercises undertaken may be ineffective or incorrect. The research also showed that the exercises focussed parent/child conflict, had an emphasis of illness and performance, excluded siblings, and were emotionally very demanding for parents, children and siblings. Families reported they were only given a leaflet to guide them about how to do the exercises or were only shown once how to do the exercises.

A very few therapists insist that the full programme of thirty repeated movements for each exercise should be completed by families. Most other therapists adopt a more creative approach to help the families use a variety of games and activities which would also achieve the aims of the exercise routine. Most clinicians have been aware of considerable difficulties families encounter and try to work within realistic parameters of the family resources and circumstances.

Key elements for an achievable home exercise routine
Having outlined some of the problems, there remains the enduring fact that exercise in general helps children with arthritis, and a well planned, effective programme of daily exercises can be especially beneficial.

An effective exercise routine achievable in the long term needs to be:

1. age appropriate, so that you choose relevant rhymes and games for a four year old which will be very different from those used for motivating an eight year old child.
2. creative, in order to stop the routine from becoming so grindingly boring that both adult and child stop doing it. Having themes for some activities, or doing new ones all help add interest to a very boring routine.
3. relevant and negotiated so that parent, child and therapist understand the resources available at home (like space, mats, other children's needs, parents work commitments). It is also helpful for there to be a set of options, or contingency plans, so that you can try plan 'B' if plan 'A' does not work.
4. understood by those trying to do the exercises at home. The supervising parent, and their partner need to understand why the routine is necessary, and the specific aims of each movement. This is not rocket science, and most parents can understand simple explanations. For example 'this exercise is to help build up the muscle strength at the top of her leg so that she has more stamina, which will help her walk for longer periods'. Where parents do not understand the aims or technique the exercises are unlikely to be carried out. As the young person develops they too should be taught about why the exercise are important, and how they should be accurately carried out.
5. agreed by both parents, research shows that when only one parent is informed about the routine there is often serious disagreement between partners about how aggressively or accurately the routine should be carried out. From the beginning it may help to involve grandparents or other adults in learning about the routine. This means that the responsibility of the routine is shared rather than left to one adult (usually the mother), that supervising adults support one another, and together the family are more likely to deliver an achievable routine.
6. realistic, therapists may ask you to complete the routine every single day, and to complete it even if any joint is inflamed, swollen and painful. This may be the clinical ideal but in practice, you may find it more achievable to do it for week days only, or for batches of three weeks followed by a 'therapy holiday'. If you do it in this planned way it is achievable by more families, and the whole family know where they are in the routine. If you do it every day, it will become a considerable strain for the family but can be achieved by determined parents.