The Occupational Therapist
The role of the Occupational Therapist (OT) in treating children/young people with JIA is very diverse, ranging from:
- assessing your child’s ability to perform day-to-day tasks and routines and suggesting alternative ways to carry out tasks
- offering practical support and advice on assistive gadgets/aids
- offering advice on pain management and techniques to improve sleep and energy levels
- acting as a liaison between your family, healthcare team and school about current needs and future careers advice.
The OT’s aim is to promote and preserve your child’s normal childhood activities as they progress through all the usual developmental stages and into a productive adulthood so that they:
- feel confident in their abilities to perform everyday tasks and routines
- maintain good hand and wrist function
- are as independent as possible
- keep up with their peers in terms of their social and emotional wellbeing.
The OT will help children/young people achieve these by helping them to set realistic goals within a realistic timeframe.
When might my child be referred to an Occupational Therapist?
When your child goes to an out-patient clinic appointment you may be asked to fill in a Children's Health Assessment Questionnaire (CHAQ) before the appointment with the doctor. These questionnaires give the doctor an idea of how well your child's disease is being managed and how independent they are in their everyday activities. Sometimes, the doctor may ask an OT to carry out a more comprehensive assessment of your child’s physical abilities to determine whether they need extra help and assistance.
Difficulties in being able to perform even the most basic tasks often result from symptoms affecting the joints of the upper limbs, particularly the wrists and hands. Physical symptoms, such as stiff, swollen and painful joints can mean children don’t want to take part in activities because they are worried it might hurt or cause further joint damage. They may also be worried they won’t do as well as their friends or be able to keep up with them.
Pain can also affect how well your child may sleep or delay the onset of sleep. A disturbed night’s sleep can really affect your child’s ability to function during the day and can lead to developing abnormal sleeping patterns, which can leave them feeling exhausted.
What might the OT do for my child?
As part of the multi-disciplinary team (MDT) the OT works closely with families and children/young people to find out how JIA affects their daily lives and recognises every child’s needs are different. The OT will ask questions about any physical symptoms such as pain and stiffness, their self care such as washing and dressing, and chores such as tidying their bedroom etc. as well as details about how they are coping at school and during leisure activities to try and find out:
- which joints are affected, severity of pain and range of movements
- does anything make the symptoms better/worse
- do they have any stiffness and does this vary during the day
- how much help they need for certain tasks
- are there any difficulties at home and school/college and what these are
- how much sleep is your child is getting.
Once the OT has all this information they will be able to see whether your child needs any help and create a treatment plan specific to their physical and emotional needs. This may include a more focussed assessment for example:
- hand/wrist assessment – if your child has arthritis in their wrists and/or hands the OT will examine them to:
- determine their ability to move the hands/wrists and grip effectively
- their ability to carry out activities which require dexterity
- hand writing assessment- this may be carried out if writing is causing hand/wrist pain or, they are finding it difficult coping with increased written workloads. The OT will look at their:
- seating posture
- writing posture/grip and writing speed
Practical ways the OT can help
The OT can help by suggesting:
- hand/wrist exercises to strengthen or stretch specific muscles
- pain management advice techniques to help to reduce pain and stiffness in their hands and wrists
- activity modification by suggesting different ways to do an activity for example, adopting a more supported seating posture, taking regular rest breaks and getting the correct pen grip with or without the help of a pencil/pen grip aid
- splinting - splints are sometimes used:
- when joints are very painful and the pain and stiffness are having an effect on their ability to carry out certain tasks
- to stabilise a joint if there is deviation or subluxation (ie. misalignment/dislocation) at the joint
- to stretch out soft tissues which have tightened and caused loss of movement to e.g. a finger joint
- Teaching relaxation techniques and techniques to increase sleep and energy levels
- Liaison between family, healthcare team and school - communicating with teachers and special educational needs coordinators and providing the school with relevant information, advice and recommendations that will support your child attend and participate in lessons and extracurricular activities during their school day. The OT may occasionally visit your child's school to:
- assess the school environment and school day
- carry out specific assessments where professional evidence is required to support a need for concessions e.g. additional time during examinations, giving pupils access to a laptop to enable them to type during examinations or for more extensive pieces of work where prolonged writing causes pain.
- Goal setting: after the OT has identified any problems which are affecting your child’s daily life they will help them set goals by considering which problem is the most important or urgent to them. To help your child achieve these they will agree smaller goals and a timeframe which are realistic and achievable.
- Pacing/energy conservation: when your child is working towards a specific goal or trying to increase their muscle strength and endurance it’s important they pace themselves. OTs can help your child to set the right pace for themselves so that smaller targets towards reaching their goals can be achieved. In promoting independence, pacing techniques may be required to build up full participation in some daily activities and in some cases the OT can offer advice on appropriate assistive gadgets/aids or may make a supportive splint which would enable them to continue to be independent in an activity during a flare of their disease.
The way OTs work may be slightly different in different units but their key skill lies in the individual assessment of your child within your family, community and school. The often long-term relationship between your child and their OT means they are a good source of support and advice to help your child to develop and maintain an independent life.
By Mrs Gaby Willis (Occupational Therapist)
Original article: 05/01/2015
Next review due: 05/01/2018