Online forum users’ views and experiences of managing Irritable Bowel Syndrome (IBS): a qualitative analysis of discussion content

Abstract

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 and Setting: a qualitative study exploring three UK-based online discussion forums

Methods: a scoping review identified UK-based discussion forums with high activity and frequent use that 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; 2) receiving emotional support. The most prevalent topics were lifestyle changes including diet, using oral preparations (e.g. 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.

Conclusions: online forums seem generally 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.

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Identifiers

ORCID for Emma Teasdale: orcid.org/0000-0001-9147-193X

ORCID for Hazel Everitt: orcid.org/0000-0001-7362-8403

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