The literature – the only kind currently available – is the result of research which produced substantial evidence that some key emotional and practical support needs faced by parents of children with JIA were not being addressed.
Kate Llewelyn, head of information services at Arthritis Care, explained: ‘Juvenile arthritis is a painful condition. It can be very isolating and have a huge impact on family life. As well as having to adjust to life with medication and hospital appointments, family life is disrupted and parents can feel anxious, scared and even guilty that their child is in so much pain.
Arthritis Care’s free information aims to fill the gap and reassure parents by giving them the facts to help them manage their lives in a more confident way.’
The main booklet, titled My Child has Arthritis – a Practical Guide for Parents, covers the emotional impact on a family and gives a practical look at managing the condition, including tips from other parents. Three additional leaflets offer a guide to three types of JIA and the treatment options – oligoarticular JIA, systemic JIA, and polyarticular JIA.
US-born actress and singer Kelly-Anne Lyons has been Arthritis Care’s celebrity supporter for young people since March 2011 and is backing the campaign: ‘I was diagnosed with juvenile arthritis at the age of 13 and I know that, without the support of my parents, family and friends, it could have been a very isolating experience.
The information that Arthritis Care is now providing demystifies the whole topic of juvenile arthritis and helps parents who are trying to come to terms with the fact that their child has arthritis. I know that my parents would have really benefited from something like this had it been available at the time of my diagnosis.’
Parents of children with JIA have already praised the booklet. Marie-Louise Grant of Bath said: This is a very comprehensive booklet which covers all aspects of JIA and answers many questions that parents may have, from the primary stages of diagnosis. The information is detailed and the terminology is easy to understand.’
Sharon Whiffen of Weston-Super-Mare agreed: ‘A booklet for parents is a brilliant idea because, when you have just been told that your child has arthritis and you haven’t got much information, the facility to read a booklet gives you more of an insight into what it’s all about. It’s so useful to have help from people who are in the same position. It gives you that bit of support and encouragement.
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