The CCAA is a registered charity (No. 1004200) run by parents and professionals
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.
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.
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.
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.
Exercises quickly become boring, so consider:-
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.
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.
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.
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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
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