Background For patients with an immune-mediated inflammatory disease (IMID), starting a family can seem like a daunting decision due to the lack of information and guidance around how IMID affects pregnancy. In addition to the normal concerns about pregnancy, living with a chronic illness raises complicated questions about the ability to conceive, caring for a young child or even whether patients should become parents given the potential for children to inherit the disease. As patients seek answers – and often find none – they can begin to lose hope, and some may forgo the decision to have a family altogether. The “Swedish Young Rheumatics” partnered up with another young IMID association, “Young with Psoriasis” and AbbVie to produce an informative and hope giving book. The collaboration resulted an informative book that provides a wealth of information on family planning for IMID patients
Objectives We recognized that this was an issue that no one wanted to take on, but something very important in most young patient's life.
The purpose was to create a book that filled the void, something to start a discussion round and something to find comfort and support in for everybody involved.
The book also addresses questions regarding medication, adoption and IVF
Methods In order to show the broadest and truest spectra of the topic, both “Swedish Young Rheumatics” and “Young with Psoriasis” searched through their channels, to find members who wanted to share their stories on the topic. The search was carried out through social media and their member magazines. Singles and couples were interviewed by an external party, finally 7 couples and 4 singles stories reached the book. The stories contain hope, longing, happiness, strength and a lot of questions is raised and answered. Everybody were interviewed in depth and their stories accompanied by beautiful pictures taken in their natural environment. All medical parts of the book were approved and checked by Prof of Dermatology Mona Ståhle and Prof of Rheumatology Lennart Jacobsson.
Results The result is a highly informative photo-filled book that provides a wealth of information on family planning for IMID patients. “Starting a Family” captured a range of positive stories from young couples with IMID conditions who had been successful in starting a family, weaving a narrative of hope and providing definitive answers around family planning. The book has also led to initiated discussions with new target groups such as midwives, and the Associations have reached out with their messages in new channels, which have resulted in new valuable contacts and relationships. The book has been distributed for free to everybody who has got in contact with one of the associations and also to health care, both through the associations and the project partner AbbVie.
Conclusions The Swedish Rheumatism Association believes in the importance of empowering the patients. By offering tools for self-help combined with personal advice from a professional health care worker we can support a general movement towards a healthier lifestyle.
Disclosure of Interest None declared