RT Journal Article
SR Electronic
T1 Online forum users’ views and experiences of managing irritable bowel syndrome: a qualitative analysis of discussion content
JF BJGP Open
JO BJGP Open
FD Royal College of General Practitioners
SP bjgpopen20X101084
DO 10.3399/bjgpopen20X101084
A1 Emma Teasdale
A1 Hannah Clarke
A1 Nick Chen
A1 Hazel Everitt
YR 2020
UL http://bjgpopen.org/content/early/2020/10/12/bjgpopen20X101084.abstract
AB Background Irritable bowel syndrome (IBS) is common and often negatively affects quality of life. Patients frequently perceive medical interventions as inadequate and seek support from other sources, including online discussion forums.Aim To explore online discussion forum topics posted by people with IBS.Design & setting A qualitative study exploring three UK-based online discussion forums.Method A scoping review identified UK-based discussion forums with high activity and frequent use, which did not require a password/registration to view posts (two IBS-specific and one general health forum). Internal search functions were used to identify and export relevant discussion threads relating to managing IBS. Inductive thematic analysis of exported discussions was undertaken.Results Analysis identified two main overarching themes from 122 relevant discussion threads: 1) sharing information and practical advice about lifestyle changes; and 2) receiving emotional support. The most prevalent topics were lifestyle changes, including diet, using oral preparations (for example, supplements or probiotics), and physical activity. Dietary changes were usually considered positive, and most hopeful for potentially alleviating symptoms. Emotional support was also regularly offered with expressions of empathy, kindness, and gratitude, and a sense of users feeling less alone. Some discussions raised concern around potentially inappropriate symptomatic reassurance, and negative or conflicting advice.Conclusion Online forums seem, generally, to be a positive experience for those posting, but include potential risks of misinformation. Most posts focus on symptomatic relief through lifestyle change and/or emotional support. Clinicians could gain a better understanding of patients’ ideas, concerns, and expectations of IBS diagnosis and management by asking about patient-acquired online forum information.