Background At least every ninth person with rheumatic and musculoskeletal diseases (RMDs) reports severe limitations of social participation due to multiple health problems and reduced resources . Reduced participation is frequently associated with social interactions and communication around the subject of disease-related problems . These conversations may be necessary for the patients in order to follow their interests or reach certain goals. If the patients experience difficulties in these situations, low communication skills may be significant barriers to social participation.
Objectives To identify significant factors of disease-related everyday communication of persons with RMDs in a nationwide project funded by the Deutsche Rheumaliga Bundesverband e.V. (DRL). Based on the results, a training to enhance the communication skills of persons with RMDs in various situations significant for social participation will be developed.
Methods An online questionnaire addressing context, content, difficulties, and burden of the disease-related everyday communication was answered by 1.015 persons with RMDs (87% females, mean age 55 (SD 12) years, mean disease duration 16 (SD 12) years). Communication skills were recorded by the short version of the Insecurity Questionnaire . In this participatory research project four persons with RMDs are involved throughout the project.
Results More than half of the participants report difficulties in disease-related conversations across various situations. The majority of these persons suffer from this experience as a burden particularly in conversations at the work place or in civil services. Compared to men, women report difficulties more frequently in the private environment and with representatives of public authorities and they feel a higher burden due to difficult conversations in all situations. In comparison with population samples the communication skills of persons with RMDs are lower with higher scores of the scales “fear-of-failure/criticism”, “fear-of-contact”, and “inability-to-say no” of the Insecurity Questionnaire.
Conclusions The project offers new insight into the disease-related communication of persons with RMDs. The subsequent training (“KOKOS-Rheuma”) will include difficult and strenuous conversations especially at the work place or in civil services. Persons with RMDs will be given exercises for typical situations that require saying no, adequate arguing, and giving feedback in order to reduce fear of failure and criticism.
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Disclosure of Interest None declared