Beliefs about sharing illness experiences: Development of a scale and relationship with symptoms of fibromyalgia

The aim of the current research was to evaluate, in people with fibromyalgia, the extent to which beliefs about sharing illness experiences are associated with functioning and distress, and to explore the mediating role of illness behaviours. A new scale was designed to address this.

The Beliefs about Sharing Illness Experiences (BASIE) scale was developed, and initial tests of reliability and validity were conducted. A cross-sectional design was used to determine relationships, including mediation analyses.

Individuals with fibromyalgia (n = 147) and a comparison group of individuals without fibromyalgia (n = 47) completed questionnaires online. Construct validity was assessed by comparing these two groups. Convergent validity was assessed through correlations with the BASIE and measures of support-seeking and self-sacrifice. Correlation analyses were used to determine relationships with illness behaviours and outcome measures (distress and global impact). Mediation analyses were used to test the indirect effects of illness behaviours.

The BASIE was correlated with expected convergent measures and had good internal consistency (Cronbach's alpha = .939). Individuals with fibromyalgia had significantly higher scores than the comparison group. There was a direct relationship between BASIE scores and outcomes, in terms of functioning and distress. The relationship between BASIE scores and functioning was partially mediated by personal/emotional support-seeking and all-or-nothing behaviours, and not by symptom-related support-seeking or limiting behaviours.

Beliefs about sharing illness experiences may be a key factor in maintaining cycles of distress and symptoms in people with fibromyalgia, together with all-or-nothing behaviours and personal/emotional support-seeking. Statement of contribution What is already known on this subject? Maintenance of fibromyalgia is likely to be a complex autopoietic relationship including symptoms, beliefs, behaviours, and emotions. Research suggests possible roles of beliefs about unacceptability of emotions and beliefs around interpersonal situations, and behaviours in social situations as well as limiting and all-or-nothing behaviours. People with fibromyalgia may experience stigma, sometimes resulting in secrecy around their condition and symptoms. What does this study add? The BASIE is a 21-item questionnaire that measures beliefs around sharing illness experiences. Individuals with fibromyalgia hold stronger beliefs around unacceptability of sharing illness experiences. These beliefs are related to functioning and distress, partially mediated by illness behaviours.