Disease-related everyday communication of persons with rheumatic and musculoskeletal diseases—Results of a participatory research project

Abstract Objective The aim of the present study is to describe and analyse significant factors of disease-related everyday communication of persons with RMDs in a nationwide project in Germany funded by the Deutsche Rheumaliga Bundesverband e.V. (German League against Rheumatism). Methods In this participatory research project four persons with RMDs are involved. An online questionnaire addressing context, difficulties, and burden of disease-related everyday communication was answered by 1.015 persons with RMDs. Social and communication skills were recorded by questionnaires to capture social insecurity and patient communication competence. Results More than half of the participants reported difficulties in disease-related conversations across various situations. The majority of these persons suffer from this experience particularly in conversations at the work environment or with staff members of authorities. They feel unconfident especially in situations which require saying “no”. Furthermore, compared to the general population persons with RMDs have more anxiety about contact with others. Conclusion Strengthening the social skills of persons with RMDs in conversations related to everyday situations can promote a self-determined life and contribute to the maintenance of social participation. Pratice implications Based on the results, a communication skills training for persons with RMDs will be developed.