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

Author

Listed:
  • Kate Muse

    (School of Psychology, University of Worcester, Worcester WR2 6AJ, UK)

  • Emma Johnson

    (Children’s Psychological Medicine, Oxford Children’s Hospital, Oxford University Hospitals NHS Foundation Trust, Oxford OX3 9DU, UK)

  • Annabel L. David

    (Children’s Psychological Medicine, Oxford Children’s Hospital, Oxford University Hospitals NHS Foundation Trust, Oxford OX3 9DU, UK)

Abstract

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.

Suggested Citation

  • Kate Muse & Emma Johnson & Annabel L. David, 2021. "A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease," IJERPH, MDPI, vol. 18(15), pages 1-28, July.
    • Handle: RePEc:gam:jijerp:v:18:y:2021:i:15:p:8038-:d:604252
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    References listed on IDEAS

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    1. Barned, Claudia & Stinzi, Alain & Mack, David & O’Doherty, Kieran C., 2016. "To tell or not to tell: A qualitative interview study on disclosure decisions among children with inflammatory bowel disease," Social Science & Medicine, Elsevier, vol. 162(C), pages 115-123.
    2. Cook, Jonathan E. & Purdie-Vaughns, Valerie & Meyer, Ilan H. & Busch, Justin T.A., 2014. "Intervening within and across levels: A multilevel approach to stigma and public health," Social Science & Medicine, Elsevier, vol. 103(C), pages 101-109.
    3. Jacqueline Sammut & Josianne Scerri & Rita Borg Xuereb, 2015. "The lived experience of adults with ulcerative colitis," Journal of Clinical Nursing, John Wiley & Sons, vol. 24(17-18), pages 2659-2667, September.
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    Cited by:

    1. María José de Dios-Duarte & Andrés Arias & Carlos Durantez-Fernández & Virtudes Niño Martín & Elena Olea & María Ángeles Barba-Pérez & Lucía Pérez-Pérez & Rosa M. Cárdaba-García & Ana Barrón, 2022. "Flare-Ups in Crohn’s Disease: Influence of Stress and the External Locus of Control," IJERPH, MDPI, vol. 19(20), pages 1-12, October.
    2. Alon Alalouf & Michal Soffer, 2023. "Stigma Management, Social Support, and quality of life: an exploratory study among people with Crohn’s Disease," Applied Research in Quality of Life, Springer;International Society for Quality-of-Life Studies, vol. 18(1), pages 455-471, February.

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