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Fehlendes Wissen führt zu fehlendem Verständnis und beeinträchtigt die Empathie gegenüber Menschen mit Behinderungen und deren Lebensumständen. Diese Arbeit untersucht bisherige Methoden zur medialen Verständnisvermittlung chronischer Krankheiten mittels Seznografie. Der Fokus liegt dabei auf rheumatischen Erkrankungen. Die Analyse beinhaltet Aspekte der Wahrnemungsvermittlung, welche bislang noch nicht oder ungenügend erforscht wurden. Es werden Beispiele zu verschiedenen Inszenierungen von Krankheit und deren Auswirkungen auf die Betroffenen gesammelt und analysiert. Dabei wird beurteilt, welche Methoden zur Vermittlung eingesetzt werden können, um durch das Erlebnis von Objekten die Empathie gegenüber körperbehinderten Menschen zu steigern und in weiterer Folge deren Inklusion in die Gesellschaft zu verbessern. Die Kombination aus faktischem Wissen gekoppelt mit einer Selbsterfahrung verstärkt den Lerneffekt und kann das Verhalten nachhaltig beeinflussen. Durch das immersive verstehen einer Situation besteht die Möglichkeit Empathie aufzubauen und zu stärken. Diese Faktoren werden bei der Konzipierung mit einbezogen und sind maßgeblich für die Struktur der Ausstellung. Das erarbeitete Austellungskonzept baut auf bisherigen best practice Beispielen, sowie recherchierten Methoden auf, wobei die Besucher:innen immersiv mit dem Thema Behinderung und chronische Krankheiten konfrontiert werden. Dieses Konzept ist in Form einer Partitur dieser Arbeit beigelegt, um den Erlebnispfad durch die erarbeiteten Inhalte und Darstellungen übersichtlich zu präsentieren. Die entwickelten Objekte wurden durch Recherche und anhand von Interviews auf ihre Eignung geprüft und in ihrer Wirkung und Relevanz bestätigt.The use of objects to experience inflammatory rheumatic diseases in order to increase knowledge and understanding through perspectivetaking, with a focus on enhancing empathy. A deficiency of knowledge leads to a lack of understanding and compromises empathy towards people with disabilities and their everyday circumstances. This paper examines existing methods for communicating understanding of chronic illnesses through media using scenography. In this context, the focus is on rheumatic diseases. The analysis contains aspects of the communicative method that have not yet been researched yet or have not been sufficiently explored. Examples of different performances of illness and their impact on those people affected are gathered and discussed. It is assessed which methods of communication can be used to increase empathy towards physically disabled people - through the experience of objects - and thereby improve their inclusion in society. The combination of facts combines with an immersive experience strengthens the learning effect and can have a sustainable impact on people‘ s behaviour. Through the immersive experience of a situation, there is a possibility to build and strengthen empathy. These factors are included in the concept and are significant for the structure of the exhibition. The concept of the installation is based on existing best practice examples and researched methods, where visitors are confronted with the topic of disability and chronic diseases in an immersive way. The concept is enclosed with this work in the form of a partitur, in order to present the path of experience with the contents and representations that have been worked out in a clear way. The objects which were developed were tested by research and on the basis of several interviews for their suitability and their effectiveness and relevance were confirmed

Young people’s perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force

Introduction Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.Methods A multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still’s disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.Results Fifty-three patients (21 with RA/JIA/Still’s, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.Conclusions Despite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease

Young people's perspectives on patient-reported outcome measures in inflammatory arthritis:Results of a multicentre European qualitative study from a EULAR task force

International audienceIntroduction: Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.Methods: A multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still’s disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.Results: Fifty-three patients (21 with RA/JIA/Still’s, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.Conclusions: Despite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease