Development and pilot testing of a communication training for persons with rheumatic and musculoskeletal diseases

Abstract

Background: Persons with rheumatic and musculoskeletal diseases (RMDs) frequently experience problems in disease-related communication in their daily lives. Based on an online survey and interviews with experts, we develop and evaluate a training (“KOKOS-Rheumaâ€) to enhance the communication skills of persons with RMDs in various situations (communication at work, with doctors, acquaintances, strangers and staff members of authorities and institutions). The project is funded by the Deutsche Rheuma-Liga Bundesverband e.V (DRL). Methods: We pursue a participatory research project: Four persons with RMDs are involved throughout the project (“research partnersâ€). To assess the feasibility and acceptance of the training before the evaluation, the training is conducted by one research partner and one researcher each in two groups in February 2016. Eight women between 42 and 65 (M= 52.13 years, SD=7.28) participated in the first pilot group and completed an evaluation sheet. Findings: All participants of the first pilot group stated that the training would change their communication and each of them wrote down aspects which they want to change. They also would recommend the KOKOS-Rheuma-training. The first pilot group also provided information regarding improvements such as some small changes in the sequence of the training and the design of the material. Discussion: The findings are used to amend the training and influence the design of the train-the trainer workshop for members of the DRL who will be trainers of KOKOS-Rheuma during the evaluation phase. The evaluation will provide evidence whether KOKOS-Rheuma can positively influence the social participation of persons with RMDs.