Patients with fibromyalgia syndrome are often severely restricted in their ability to participate in everyday activities and in social interaction. The aim of this study was to document female patients' subjectively-perceived limitations in participation and to develop material to generate items for a specific participation questionnaire.
We collected data from 8 groups of women with fibromyalgia syndrome (n=38), and developed a hierarchical system of categories using the patients' statements (ATLAS.ti; Qualitative Data Analysis).
Our final group of categories contains 10 superordinate categories. Women with fibromyalgia syndrome often describe restrictions in their relationships with other people, and the impaired ability to engage in social and leisure activities. They speak of difficulties at the workplace, while doing housework, and complain about a lack of understanding and awareness on the part of the general public.
Fibromyalgia syndrome patients admit to be extremely impaired in a variety of social roles. Their statements have enabled us to develop a questionnaire that reflects the range of factors restricting participation from the patient's perspective.