Carers and JIA
You need to regard yourself an expert in caring for your child as you are the one who will spend most time doing so. Your aim is to achieve a good understanding of the needs of both yourself and your child and explain this to your team of supporters be they family, friends or clinicians. Never ever regard yourself as a victim. There will always be someone better off and worse off than yourself. Take each day as it comes but remain in control as best you can. The Basics In Australia about 6000 children are affected by arthritis, making it as common as Type 1 diabetes. Every child’s JIA is different and responds differently to treatment. It is very difficult to predict how long JIA will last, its severity or how often it might swing between being almost symptom-free to being disabling. There is still no cure for JIA but some children go into remission, meaning symptoms disappear for a period of time then may return.
If you think your child has JIA, appears sore and stiff and moves with difficulty go to your GP and ask for a referral to a rheumatologist. The rheumatologists will examine your child and may well conduct a series of tests, similar to the following:
- FBC - full blood count. A blood test to check for anything abnormal that might be important in managing the illness.
- RF - rheumatoid factor. An antibody detected by a blood test. This is an indicator of the type of JIA your child has.
- ESR - erythrocyte sedimentation rate. A blood test that detects how much inflammation there is in the body.
- CRP - C-reactive protein. This is also a test that detects inflammation.
- ANA - antinuclear antibody. This test is used to do two things. It helps identify the type of arthritis your child has, and it is an important indicator for your child’s risk of developing eye problems.
- HLA-B27 - A blood test that helps to determine the type of arthritis that your child may have.
- X-ray - Takes pictures of your child’s joints to see any damage and how they change with time.
- MRI or CT scans. They do much the same as X-rays but in greater detail.
To achieve the best possible health outcomes, the management of your child’s JIA will involve a team effort over a long period of time. It is important that you and your child are at the centre of the care team, involved in all aspects of health management and decision- making. Depending on the child’s individual needs, the team may include:
- Rheumatologist (paediatric rheumatologist if available)
- General practitioner (GP)
- Rheumatology nurse (if available)
- Occupational therapist (OT)
- Ophthalmologist (specialist eye doctor)
- Podiatrist, Orthotist
- Child psychologists/Counsellors/ Play therapists/Social workers
- Teachers and school support staff
- Other family members – siblings, grandparents and carers.
Just remember that you and your child are driving the show and seeking support. Always ask your clinicians to explain anything you don’t understand. As early as possible, involve your child in their treatment. Allow your child to take part in some decisions related to his or her care.
The Big “P” for Pain
Pain is a very common symptom of JIA, even when children are on therapies that are effectively treating their underlying condition. High levels of pain can result in children with JIA being less physically active and may reduce their participation in school, social and family activities. It can also result in sleep disruption and poor sleep quality, which in turn can cause daytime fatigue, reduced mood and increased sensitivity to pain – essentially creating an ongoing pain cycle. A range of interventions including medicines, use of hot and cold treatments, relaxation and distraction techniques, deep breathing, massage, gentle stretching and exercise can assist in relieving pain. Refer to our pain section. Children with sore joints may be reticent to move but staying in one position for too long, including lying down or resting, can cause pain so children should be encouraged to move regularly to alleviate stiffness and pain. As a parent, you are well placed to pick up on cues that your child is in pain, even if they can or do not articulate it. These may include the child becoming quiet, withdrawn or more clingy, sad or irritable, or changes in appetite, play and sleep. Parents play a key role in assisting children to accurately describe their pain (its location, type and its intensity), communicating this to the care team and assisting the child to develop skills in self-management of their pain.
Physical activity is essential for good health and wellbeing in all children, and even more so for children with JIA. It assists to: * relieve stiffness, improve joint mobility and range of movement * maintain/enhance muscle and bone strength * improve physical function and independence. It is important that your child remains as active as possible, every day. For children, play is a vital part of physical, cognitive and social development. It promotes imagination and a positive sense of self. Playing with others encourages the development of social skills and friendships. For the child with JIA, play can be a time to explore unfamiliar experiences or express feelings and anxieties associated with living with their condition. If your child is in pain or having a flare, you may need to invite a few children into their play circle rather than expect them to join the neighbourhood rough and tumble.
Look After Yourself
Most importantly, parents of children with JIA need to take care of themselves too. Be sure to make time for things you enjoy, spend time with your partner and/or friends and find ways to deal with stress. In order to give care to others, you need stress relief, support, and time for yourself and your family. You’ve earned it. Avoid the pitfalls of caregiver burnout by giving yourself regularly scheduled breaks (this includes a vacation every now and then too!). This may also help:
- Relaxation techniques are vital. Practicing them often will enable you to feel calmer, happier, and better able to help others.
- Protect your own health. Research suggests that a caregiver's immune function is often suppressed by the stress of caring for others. Boost your resistance by eating well, getting enough rest and exercise, and pursuing activities that bring you pleasure.
- Join a support group to talk out frustrations with other people in your situation and to get helpful ideas.
- A blend of assertiveness and cognitive restructuring skills can help you share the work, instead of taking on everything yourself. Spell out to other family members what needs to be done and what sort of help would be best. If no one offers help, ask for it.
- When someone offers help, accept.
- Accept that circumstances change quickly. Periodically reassess what you can offer and what assistance you need. If it's getting too hard to complete certain needs, ask family members for help or consider other options, such as hiring paid caregivers to take on these tasks.
- Accentuate your spiritual connectedness to something greater than yourself, be it to God, community, or the natural world.
View this useful Ted Talk
If you are in Australia find help here:
- Rheumatologist: Australian Rheumatology Association
- General practitioner:The Royal Australian College of General Practice
- Physiotherapist: Australian Physiotherapy Association
- Occupational therapist: Occupational Therapy Australia
- Psychologist: Australian Psychological Society
- Dietitian: Dietitians Association of Australia
- Podiatrist: Australian Podiatry Council
- Exercise physiologist: Exercise and Sports Science Australia