Children with musculoskeletal conditions are often socially isolated because their school, their friends and their extended family don’t properly understand their disease.
Children with JIA and other musculoskeletal conditions often live with ongoing pain and fatigue and can be sidelined at sporting activities or simply not invited to events because the organisers fear causing injury or pain.
To tackle this issue, Musculoskeletal Australia has launched a suite of resources as part of its MSK Kids program to help parents and children communicate the nature of their condition to their wider social network.
The MSK Kids Care Pack contains the Individual Health Care Plan, which is a form completed by the paediatric rheumatologist to help parents educate the school and community about what their child is capable of doing and their needs.
The Individual Health Care Plan includes information such as medications and what needs to be considered when a child is going on school camp or participating in PE.
“The idea is the family then sits down with someone at school and goes through the Health Care Plan so the school has a full understanding of what is needed,” says Buffy Squires, the MSK Kids Program manager.
“The feedback we often get from families is that when they give the information to school, no one at the school is responsible for it. So, the buck would get passed around a bit between the year coordinator and the school nurse and so on.
“So, we’ve tried to get around that problem by getting parents to say, ‘Okay, we’re having a sit-down meeting. Who at the school is going to be responsible for this?’ And you have one point of contact.”
Another aspect of the care plan would be the child’s susceptibility to illness, said Ms Squires.
Children with MSK conditions are at greater risk of complications from diseases such as chickenpox, so it’s important for the school to contact the parent and let them know if another student has come down sick so their child can stay home.
“So, it’s really just a resource that enables the school and the family and the paediatric rheumatologist to all work together and ensure that the child is getting the best possible outcome for their child at school,” said Ms Squires.
The MSK Kids Care Pack also contains the “Rheum Record”, a 20-page booklet with information about JIA and tips on how to effectively manage the condition.
All paediatric rheumatology clinics in Australia – around a dozen in hospitals and 30 private clinics – were sent a physical copy of the MSK Kids Care Pack towards the end of last year.
If you haven’t received yours, you can contact email@example.com
Some of the resources are available to download online for free at:
The MSK Kids Live online portal was also launched late last year to connect children with MSK conditions living in Australia and New Zealand.
Around 1 in 800 Australian children aged 0-17 currently live with JIA, and around 20,000 children have an MSK condition.