'Nobody wants to talk about that stuff': a qualitative investigation of the anticipated public perceptions of individuals with Inflammatory Bowel Disease

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Edwards, Elia-Jade
Oaten, Megan
Wishart, Darren
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2025
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Abstract

Objective Little research has explored in-depth qualitative opinions on anticipated public views of Inflammatory Bowel Disease (IBD) among those with the condition, and the potential impact of these views on wellbeing. This study explored the perceptions and reactions anticipated by those with IBD from the public (RQ1), and the impact these anticipated perceptions have on participants’ physical and psychological health, and their quality of life (RQ2).

Method Twenty participants (aged 18–56 years) were recruited via Crohn’s and Colitis Australia and online IBD support forums. Individual, semi-structured interviews were conducted with participants. To avoid researcher bias, two independent data coders conducted thematic analysis to identify themes and subthemes.

Results The themes identified by both coders were further examined and reported. Four themes were identified: (1) poor public awareness of IBD; (2) difficulties with disclosure; (3) emotional and social public reactions; and lastly, (4) ‘self-exclusion’. Most participants indicated that their physical health and quality of life are not impacted by their anticipated views, however, some participants reported that their psychological health is impacted.

Conclusion This study uncovered the adverse impact of anticipated public views on psychological health. Regarding study implications, self-excluding behaviours should be routinely assessed in clinical practice.

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Psychology & Health

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© 2025 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is not altered, transformed, or built upon in any way. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.

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This publication has been entered in Griffith Research Online as an advance online version.

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Public health

Clinical and health psychology

Social and personality psychology

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Edwards, E-J; Oaten, M; Wishart, D, 'Nobody wants to talk about that stuff': a qualitative investigation of the anticipated public perceptions of individuals with Inflammatory Bowel Disease, Psychology & Health, 2025

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