University of Worcester Worcester Research and Publications

A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease

Muse, Kate ORCID:, Johnson, E. and David, A.L. (2021) A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease. International Journal of Environmental Research and Public Health, 18 (15). p. 8038. ISSN Online: 1660-4601,

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Inflammatory bowel disease (IBD) consists of Crohn’s disease and ulcerative colitis, chronic conditions involving inflammation and ulceration of the gastrointestinal tract. Individuals with IBD may be susceptible to experiencing health-related stigma: experienced, perceived, or internalised social exclusion, rejection, blame, or devaluation resulting from negative social judgements based on the disease. This qualitative research synthesis draws together findings from 38 studies describing lived experiences to develop a unified interpretative account of the experience of stigma in IBD. Analysis developed two categories: ‘The IBD journey’ explores the dynamic ways in which having IBD impacted on individuals’ self-identity and ‘a need to be understood’ examines the tension between wanting to be understood whilst feeling their true experiences needed to be hidden from or were misjudged by the social sphere. The overarching concept ‘feeling of otherness’ highlights that, rather than a static, binary experience, individuals moved across a continuum ranging from the excluding experience of feeling stigmatised and othered, to the inclusive experience of integration. Individuals fluctuated along this continuum across different physical, social, and health contexts. Psychological adjustment to IBD, drawing on experience of adaptive coping, and reconnecting with valued others through illness disclosure strengthened stigma resistance during more challenging times

Item Type: Article
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Copyright: © 2021 by the authors.
Licensee MDPI, Basel, Switzerland.
This article is an open access article
distributed under the terms and
conditions of the Creative Commons
Attribution (CC BY) license (https://

A pdf file of this article is available to download from this WRaP record.

Uncontrolled Discrete Keywords: stigma, inflammatory bowel disease, colitis;, ulcerative, Crohn’s disease, meta-synthesis, patient experiences, qualitative research
Divisions: College of Business, Psychology and Sport > School of Psychology
Related URLs:
Copyright Info: Open Access article
Depositing User: Kate Muse
Date Deposited: 14 Sep 2021 08:32
Last Modified: 14 Sep 2021 09:29

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