Occupational Therapy for children with JIA

What is Occupational Therapy (OT)?

The main aim of  Occupational  Therapy is to  help people of all ages live life to its fullest. They are interested in the every day activities or ‘occupations’ we all take for granted yet cause  so much distress and disruption if we are unable to do them for any reason.  In the home, such activities might include getting dressed, bathing and going up/down stairs. At school this might include, writing, doing P.E  or cookery. It may even be doing a favourite hobby or meeting friends!

Occupational Therapists or OT’s as they are commonly known,   are specially trained to work with children and young people and consider both physical and psychological needs. They  often work as part of a multi- disciplinary team  and   can help children and young people reach their full potential,  maximise their participation in activities and ensure they are fully included in all areas of life.


Occupational Therapy and Juvenile Idiopathic Arthritis

JIA  can have a profound impact upon a child/young persons ability to perform  every day activities   due to physical limitations such as  pain,  stiffness  or  fatigue. In addition,  it can also  impact upon  social and emotional well being.  A referral to an OT may prove useful in helping to overcome some of these difficulties.

Once referred, the OT will carry out an assessment of daily occupations. This may take place in clinic, at school or in the home.  S/he will be keen to analyse particular activities to determine the most appropriate course of action, this may be adapting a particular task, modifying  the environment or developing  skills. 
 

An individualised, developmentally appropriate programme will then be designed to promote maximum independence and participation.    A range of interventions may be offered including play/activity based activities designed to promote strength or range of motion, they may talk to teachers and suggest strategies to minimise fatigue, or recommend small assistive devices to promote independence. In some instances they may provide splints, suggest special equipment or adaptations to the home in order to facilitate independence. Occasionally they may prescribe a  wheelchair. More commonly the OT will offer advice,   teach useful skills and provide tips to enable you to mange your arthritis a little easier. This might include pain management strategies,  energy conservation or relaxation skills.


OT for babies/toddlers

For youngsters with JIA it is vitally important that they receive timely therapy to ensure their development is not adversely affected. In order to develop skills babies need to be able to explore their environment.  However they will quickly stop crawling or walking if their knee or wrist is hurting, or stop moving their joints fully if they become stiff.

The OT may suggest a range of interventions to help. This may include splints (please see section below), provide  specially designed   play interventions  to maximize range of motion or offer advice about  positioning, playing with your child, maximising skills etc.


Top tips for toddlers

  • Playing   with your toddler in a warm bath may provide some pain relief and allow the joints to move more freely allowing you to stretch the joints  and encourage movement.
  • Consider an afternoon tumble tots  or nursery session which  may  allow early morning stiffness to wear off and increase participation and enjoyment.
  • Involve brothers and sisters in music or action songs such as ‘one finger one thumb keep moving’, which is a great way of exercising  joints.
  • Incorporate large movements into play activities to ensure joints move though their full range
    Avoid long sedentary periods which may cause the joints to become stiff


OT with children

When  children begin school their daily occupations change dramatically  as increased demands are placed upon them . For some they may begin to realise that they are slightly different from their peer, since they may not be as independent or may not be able to enjoy all the same activities. Increasing self- esteem and maximising participation becomes a key goal at this stage.

Since a variety of activities occur during the school day It will be very important for the OT to liaise with the school at the very least, or s/he may visit the school to assess the child in the school environment. This allows the OT to see the exact demands of the school day including the physical demands of moving around the school, sitting in class writing etc. the cognitive demands such as concentration, as well as the social/emotional challenges. It can also be invaluable to teachers to  provide vital reassurance and advice who may be anxious about having a child with JIA in their class or be  unsure of  their capabilities.

From an early age it is important that children are aware of their JIA and feel they have skills to help mange some of their symptoms. This will help children feel more positive about their condition, it can also be key to building self confidence and achieving independence.  The OT  can discuss how they might tell their friends   and suggest creative ways to  remain active and  develop a healthy life style.


Learning about arthritis

  • Ask someone in your health care team to take time to explain JIA to your child in a developmentally appropriate way
  • Ask your team to provide/recommend developmentally appropriate resources you can use at home   to help teach children about their Arthritis, this might include booklets or web sites
  • Remember to re- visit   this issue regularly as your child’s cognitive skills will expand  as they grow
  • Ask about  group sessions for  children/young people  with JIA  so they can learn from each other and share experiences

Managing pain

  • Take a warm bath and allow tense muscles to relax
  • Avoid long periods in the same position
  • Warm clothes on the radiator prior to dressing
  • Try distraction using favourite activities
  • Try some relaxation
  • Always remember to take your medicine
  • Discuss pain management with your team

Managing your energy levels

  • Take regular rests and save your energy for important events that you want to do
  • During activities, sit rather than stand
  • Organise  work areas such as desks/computer stations to avoid excessive reaching & twisting
  • Plan ahead before going out, find out where the car park /bus stop is  and factor in any rest points
  • Try to have good nights sleep

Make time for activity

Exercises quickly become boring,  so consider:-

  • Rotating exercises
  • Put on a favourite CD and exercise to music
  • Getting  the family to join in sessions to make it more fun
  • Encouraging  participation in fun activity sessions such a swimming
  • Encouraging  craft activities to increase dexterity or  wrist extension
  • Ask your physio or OT to talk to the P.E teacher to make suggestions to facilitate participation   in P.E classes


OT with young people

Once young people go to secondary school they face yet another set of new challenges. As well, as the social issues involving bigger and more complex social groups and greater numbers of unfamiliar teachers, the environment is often much bigger with a greater volume of school work and subsequently books to carry.   Subjects like   technology which demand complex practical skills or lessons such as science where you are required to sit on a high stool for over an hour can also prove very challenging at this stage. Work experience is an often over looked area but is an integral part of the school curriculum which can pose additional challenges and can be a soul destroying if unsatisfactory.  It is vital that this issue is explored and  the most appropriate types of  work placement is arranged  to ensure it is valuable to the young person and provides a  positive first experience of the world of work or  a valuable learning   experience about  the unique challenges of particular chosen professions.

As a young person  grows up and begins to look toward the future  it is important to build their skill bank,  not only to  be independent around the home and in the community  but also  in managing their condition.  This might include self medicating, seeing the doctor alone telling others about their arthritis or   preparing for their ultimate move to adult services. The OT will be able to help equip the young person with the necessary skills along side other colleagues in the MDT   who may  adopt a coordinated transition plan during this period.


Tips to help you work, rest...and play

At school

  • Ensure the SENCO and class teacher  is aware of your needs
  • Positioning in class is vitally important to ensure comfort and  optimum concentration
  • Arrange any extra time for exams early
  • Make sure you have any necessary equipment/support  for practical sessions
  • Ensure a contingency plan is in place in the event of having to miss school
  • Arrange for the OT to assess your school environment

At home

  • Make time for relaxation, so tidy your room and make sure it’s a  relaxing environment !
  • Share any worries you may have, rather than bottling them up
  • Ask your OT to teach you some relaxation skills

Get a good nights sleep

  • Get into a regular routine of going to bed at the same time
  • Organise your self for school the next day before going to bed
  • Turn off your mobile phone
  • Warm the bed with a hot water bottle before getting in
  • Avoid caffeine drinks

With friends…

  • Make time to see friends, they are really  important for helping us through the rough times  in life
  • Disclose your arthritis to a few close friends you can trust, they will be important allies
  • Make sure you have lots of energy in reserve if you have a party/special occasion  to go to
    Investigate whether you are eligible to learn to drive at 17


Splints

Some children/young people may benefit from wearing splints on their affected joints to help support and protect painful joints. They may also be used to prevent or correct a deformity. The OT will select the most appropriate one by taking many different things into account .Some times the OT will make their own splint or sometimes they may use a ready made one. They may recommend night time only splints or day time splints.

What ever the splint your OT will make time to discuss any concerns you may have.  for example splints worn in public might make children/young people feel different from their peers, so a flexible wearing regime or a more acceptable brightly coloured  sports type splint or even a black neoprene splint may be more acceptable.


Splinting tips

  • Remember to have your splint regularly reviewed
  • Always combine splint wearing with an active exercise programme
  • Splints should never cause red areas, report any problems immediately
  • Encourage children/young people to become involved in splint choice e.g. colour material etc. to increase adherence
  • Sticker charts may encourage younger children to wear splints


Finding an OT

Some hospitals may have their own OT’s who are experienced in working with children and young people so your consultant can easily make a referral to them. In other areas consultants GP’s  or parents can refer to community OT’s. it is important that you are referred to a paediatric OT who ideally  has rheumatology experience.  Different types of OT will be able to provide assistance in different ways: the NHS OT will largely focus on promoting inclusion at school and providing treatment programmes to maximise function. A social service OT on the other hand will largely be concerned with providing adaptations in the home. Your doctor will be able to advise you as to which type of OT is best for you.

<<back to menu>>


Occupational Therapy Written By: Janine Hackett, Lecturer in Occupational Therapy at University of Derby.

The CCAA is a registered charity (No. 1004200) run by parents and professionals

Headquarters
General Secretary: Caroline L Cox, Ground Floor, Amber Gate City Wall Road, Worcester WR1 2AH
Tel: +44 (0)1905 745 595 | Fax: +44 (0)1905 745 703 | Email: info@ccaa.org.uk

Patron: Prof. P Woo PHD. FRCP. FRCPCH
Patron: Prof. T Southwood BM. BS. FRCAP. FRDP. FRECPCH.
Patron: Dr N Hasson MB, ChB, FRCPCH.