Background Both parents of children with JIA and rheumatology nurses have informed FRA from time to time that there is a need for an initial information package. There was a demand for information that catered to children's needs and provided support for them and their closest relatives at the stage when the diagnosis is shared with the family.
Objectives The aim of the project was to make an information package for children aged 0 to 12. A child with JIA needed to be provided with information that took into consideration the child's age and developmental stage so that any fears that the child might have as a result of him or her learning of the disease were allayed. Not only information is provided through the information package; the content can also be used to encourage discussions between a parent and a child. We also wanted to include items that give pleasure, such as a stuffed toy in the form of a bunny. A further aim was to increase awareness of FRA among families with children so that as many as possible would find the services offered by FRA and its local member associations.
Methods The first stage of the project involved conducting a survey in order to find out what the package should contain. The survey was directed to parents to children with JIA, rheumatology nurses and rheumatologists. The content of the information package:
1) An initial information binder with the following information: about JIA, food, physical activities & play, sitting & writing, eyes & dental care. There is also a separate section directed to parents. 2) A so-called gym tail and easy-to-do gymnastic instructions. 3) Bunny 4) Coloured pencils and a pen thickener. 5) A picture book about visiting a rheumatology clinic for the child. 6) Brochures: e.g. information about JIA for the closest relatives of a child diagnosed with JIA and health care professionals, information about FRA for families with children. 7) Gymnastics bag The second stage involved planning the content and the look of the material. The information package and its content needed be positive and functional – the package as a whole had to be suitable for children. The pictures and text for the picture bookwere also produced in cooperation with the healthcare professionals. Multiple channels were used to spread the information that the package had been completed, e.g. social media, the FRA website and emails to the target group.In addition, the rheumatology careunits were given instructions and informed of what to expect.
Results The packages were very well received. We have received positive feedback from both rheumatology clinics and families with children suffering from JIA.
Conclusions There was a real need for the information packages,and the information that they provide help both the families and the healthcare staff. When a child suffers from an illness, it affects the whole family, and hence it is crucial that comprehensive – and comprehensible – information and support are available so that everyday life runs smoothly and is meaningful, and so that a child with an illness does not feel like he or she is a burden to the family but considers him- or herself an equal member of the family.
We have received positive feedback from both rheumatology professionals and the families of children with JIA.
Acknowledgements Abbvie, Pfizer, BMS, Roche,The Finnish Society for Rheumatology and the Finnish Society of Rheumatology Nurses,Åberg Express,TNT Finland,Handitec,Paintek,Anglo-Nordic and of course all the individual persons, who helped with the project.
Disclosure of Interest None declared
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