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

Abstract

Objectives 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. Design 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. Methods 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. Results 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. Conclusion 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. 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.

Feeling like ‘a damaged battery’: exploring the lived experiences of UK university students with ME/CFS

“…The practical implications of this research are that universities need to provide further support. Tutors, support staff and students could be provided with information about ME/CFS, delivered in the form of workshops, information sessions or information booklets, and could cover a range of similar illnesses which are also subject to stigma, such as fibromyalgia [44]. It is important that universities enable students to be the expert on their own illness, by asking them what symptoms they have, and what support they require.…”

Oral Health and Fibromyalgia Syndrome: A Systemic Review

“…Fibromyalgia therefore has clear correlations at the level of TMJ and oral health. In particular, as can be seen from the results, patients with TMD and FM show an increase in symptoms [41][42][43][44][45]. Fibromyalgia is diagnosed due to the exclusion of other pathologies and subsequent palpation of the tender points, although it is the patient's overall symptomatic picture that leads to diagnosis.…”

Beliefs about sharing illness experiences in chronic fatigue syndrome: the role of interpersonal trust and personality

“…Research has supported a range of positive consequences of illness sharing, including an increased sense of control and agency (Hinson & Sword, 2019;Stahl, 2018). Sharing personal information about illness can be a therapeutic tool in many mental health conditions (see Stratton et al, 2018) and in physical diseases such as cystic fibrosis (Borschuk et al, 2016), fibromyalgia (Wroe & Bowers, 2019), Huntington's disease (Hakimian, 2000) and HIV (Ssali et al, 2010). Hinson and Sword (2019) demonstrated the importance of sharing illness narratives in gaining a sense of agency over one's health.…”

“…There has been little systematic research on CFS patients' willingness to share illness information. The Beliefs about Sharing Illness Experiences (BASIE) scale (Wroe & Bowers, 2019) is one of the few existing measures of self-disclosure of illness experiences. The BASIE scale focuses on patients' beliefs about the acceptability of illness experience sharing.…”

“…The BASIE scale focuses on patients' beliefs about the acceptability of illness experience sharing. Wroe and Bowers (2019) examined beliefs about illness sharing among people with fibromyalgia. Compared to control participants, those with fibromyalgia believed that illness sharing was less acceptable.…”