“But you’ve got to do something yourself as well”: Coping with fibromyalgia syndrome (FMS): perspectives of those affected and those treating them in Saarland

Abstract

Background: The complexity of the symptoms of fibromyalgia syndrome (FMS) poses a particular challenge for both those affected and those treating persons with the condition. The present study deals with the questions of coping with FMS from the perspective of both those affected and those treating them and their assessment of needs and requirements in terms of health services. Methods: In a qualitative study design, the individual views of 10 FMS patients and 10 healthcare providers were examined. The patients were selected by means of “purposive sampling” and questioned in guideline-based, problem-centred interviews. Evaluation was carried out by means of content analysis. Results: Both FMS patients and healthcare providers noted problems with availability and accessibility of health services. In addition, some patients felt that they were not taken seriously by their healthcare providers. Care providers in turn experienced reservations about the psychosomatic component on the part of patients. Self-initiative seems to be important for a positive approach to living with FMS. Conclusion: Self-help groups and regionally available networks represent important support possibilities, not least with regard to the psychosomatic component of FMS. Improved coordination of care services can be achieved by promoting interdisciplinary networking. Strengthening the self-initiative of patients and promoting the work of self-help groups can help those affected to develop individual coping strategies.