PARE0007 Family day by the swiss league against rheumatism: a networking event for children affected by jia and their families
Authors: M. Roffler, V. Krafft
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> In Switzerland 0,7 out of 1'000 children is affected by juvenile idiopathic arthritis (JIA). The incidence of JIA is 11:100'000 (1). The families affected by JIA are spread over three different language regions (the German, French and Italian regions). It is difficult for these families to get in touch with other affected families since there is no support group for JIA. A support group has never been established due to the uneven distribution in Switzerland. <h3>Objectives</h3> The aim is to offer continuing education for parents of affected children concerning their chronic disease, as well as their dealing with the illness as a family. Furthermore parents and children shall attain the opportunity to exchange information about their experiences and problems with peers in an informal setting. <h3>Methods</h3> The Swiss League Against Rheumatism has established the so-called "Family Day" (German: Familientag) which features a program for affected children/youths and their siblings as well as a separate program for their parents on the same day. In order to enable families from all Swiss language regions to participate in the "Family Day", it takes place separately in German and French in both language regions. Since most Italian speaking families in Switzerland either speak German or French, the "Family Day" is equally open to them. The Swiss League Against Rheumatism collaborates with the task group "Paediatric Rheumatology Switzerland" in order to develop relevant contents. The program for the parents aims at imparting medical therapeutic knowledge about their child's disease. Several additional main topics (e.g. uveitis, developmental paediatrics) are chosen and presented by certified experts. All are made in layman language and explain medical terms thoroughly. The parents additionally get the opportunity for formal and informal exchange within their group. The children and youth program (0–16 yrs.) is dedicated to a specific non-medical topic (e.g. magic tricks). The children are divided into several age-specific subgroups and are assisted by staff from the Swiss League Against Rheumatism. Teenagers (11–16 yrs.) may attend a specialized program during half a day. The "Family Days" are easily financed by foundation endowments. <h3>Results</h3> From 2011 to 2017 329 families (1157 individuals) participated in the "Family Day", of which 27% were in the French-speaking part of Switzerland. For participating parents this event became essential in order to educate themselves concerning their child's disease and to exchange experiences with other affected families. For most families the "Family Day" has become a fixed event in their yearly calendar. Many families participate on a regular basis for several years. <h3>Conclusions</h3> The "Family Day" has been taking place for 7 years and remains an objective for the future. Demand from parents of affected children continues to be strong and continues to increase. Since support groups have not yet been possible to implement due to demographics, this one-day-event remains a unique resource for affected families. <h3>Reference</h3> [1] Hofer M. Personal communication. Prof. Dr. med. January 30, 2018. <h3>Disclosure of Interest</h3> None declared