Background When diagnosed with a rheumatic condition (RMD), the first concern is managing and controlling the disease. More specific topics such as how you deal with a diagnosis as a parent of a child with an RMD or how to take care of children as a young parent with an RMD are less discussed with the rheumatologist. A lot of questions and concerns about heredity and pregnancy stay unanswered too.
Objectives ReumaNet wants to offer tailor made information for young people with an RMD and a child wish and for parents of a child with an RMD.
Methods ReumaNet, the Flemish organisation for people with RMDs, organised two info sessions in September-November 2015. The two target groups were 1) young (future) parents with an RMD and 2) parents with a child with an RMD. Both target groups first met informally for sharing their personal stories, concerns, experiences and expectations. During this first meeting, they noted down several questions and concerns regarding the topic. During the second session, different specialists such as a rheumatologist, a psychologist, a gynecologist, a pediatrician, … tried to answer these specific questions and they gave more information on pregnancy and RMD's in the first group, and RMD's in children in the other group.
Results Both sessions were well attended, although more people showed up during the second session. People obviously feel more safe when they mainly have to listen to information, instead of participating in a discussion.
(Future) parents with an RMD received information regarding heredity, pregnancy, delivery, (breast)feeding and practical tips and tricks regarding taking care of children. Parents with children with an RMD received not only practical information concerning juvenile arthritis (the diagnosis, the disease, future perspectives and impact in school), but also information regarding the psychological impact of receiving and dealing with the diagnosis as a parent.
Conclusions There is a great need for information for either young parents with an RMD as well as for parents of a child with an RMD. Furthermore, these two groups will always be renewed throughout the years. This means the need for this kind of information will be ongoing. Along with organising ReuMaMaMa's, ReumaNet is also developing three brochures on these topics: “Pregnancy and heredity”, “How to take care of infants”, for parents with a RMD' and “Juvenile Arthritis”. The live sessions will be repeated every two years.
Disclosure of Interest None declared