How engagement with an online community may affect self-management of anxiety in people with asthma (Preprint)

BACKGROUND Asthma and anxiety are interlinked but research on how to better support self-management of asthma-linked anxiety is scarce. Anxiety can perpetuate asthma symptoms and is a known trigger for asthma attacks. Individuals may be seeking support from peers in online health communities (OHCs), although it is unclear how this affects self-management behaviour. OBJECTIVE To explore how engagement with an OHC may address unmet needs in individuals who are experiencing asthma-linked anxiety and how this may impact on self-management behaviours. METHODS Posts were identified using search terms ‘anxiety’, ‘anxious’ and ‘panic’ in an established, moderated UK OHC. Threads containing these posts, written between 2007 and 2021, were selected if users went back to comment on the outcome of the advice received. The posts were analysed qualitatively using thematic analysis. RESULTS A total of 213 posts across 32 threads were analysed from 83 participants. Demographic information was rarely disclosed: six reported their age (21-65 years; median 25.5), one identified as female, none reported their ethnicity. Three themes were identified: i) the nature of the anxiety in the context of asthma, ii) informational and emotional support, and iii) the impact on support-seekers. Anxiety stemmed from medication side-effects, unresolved asthma symptoms, absence of a definitive diagnosis, and embarrassment when using inhalers in public. Anxiety-related medication side-effects included palpitations, panic attacks and suicidal thoughts primarily associated with starting combination inhalers like Fostair and Symbicort, and Montelukast. A lack of a definitive diagnosis was also reported as distressing and anxiety-triggering as individuals were afraid of not being listened to by clinicians. Users in the OHC responded by sharing personal experiences, encouraging consultation with healthcare professionals, emotional support and offering advice that could be followed without requiring a doctor’s appointment. Emotional support and increased connectedness were frequently able to alleviate anxiety. Other common OHC advice focused on self-education and improving inhaler technique. As a result of OHC engagement, support-seekers reported greater self-efficacy, self-advocacy and connectedness, reflected in actions such as booking healthcare appointments, preparing for discussions with doctors, and feeling more confident in expressing asthma-related needs to employers. CONCLUSIONS This study provides qualitative evidence of unmet needs related to asthma-linked anxiety and suggests that engagement with an OHC may support its self-management. Greater clinician awareness of asthma-linked anxiety and its triggers is needed. Consultations should address medication side-effects that may trigger anxiety, offer clearer safety-netting, resources for managing social anxiety, and recognise the heterogeneity of asthma diagnosis. Treating asthma as a single, uniform diagnosis may overlook the causes of some patients’ symptoms, increasing anxiety and potentially worsening their symptoms. Further interventional research is needed to quantitatively evaluate these findings.