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The experience of stigma in inflammatory bowel disease: an interpretive (hermeneutic) phenomenological study

The experience of stigma in inflammatory bowel disease: an interpretive (hermeneutic) phenomenological study

Dibley, Lesley ORCID: 0000-0001-7964-7672, Norton, Christine and Whitehead, Elizabeth (2017) The experience of stigma in inflammatory bowel disease: an interpretive (hermeneutic) phenomenological study. Journal of Advanced Nursing, 74 (4). pp. 838-851. ISSN 0309-2402 (Print), 1365-2648 (Online) (doi:https://doi.org/10.1111/jan.13492)

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Abstract

Aim:
To explore experiences of stigma in people with inflammatory bowel disease

Background:
Diarrhoea, urgency and incontinence are common symptoms in inflammatory bowel disease. Social rules stipulate full control of bodily functions in adulthood: poor control may lead to stigmatisation, affecting patients’ adjustment to disease. Disease-related stigma is associated with poorer clinical outcomes but qualitative evidence is minimal.

Design:
An interpretive (hermeneutic) phenomenological study of the lived experience of stigma in inflammatory bowel disease.

Methods:
Forty community-dwelling adults with a self-reported diagnosis of inflammatory bowel disease were recruited purposively. Participants reported feeling stigmatised or not and experiencing faecal incontinence or not. Unstructured interviews took place in participants’ homes in the United Kingdom (September 2012 – May 2013). Data were analysed using Diekelmann’s interpretive method.

Findings:
Three constitutive patterns - Being in and out of control, Relationships and social Support and Mastery and mediation - reveal the experience of disease-related stigma, occurring regardless of continence status and because of name and type of disease. Stigma recedes when mastery over disease is achieved through development of resilience - influenced by humour, perspective, mental wellbeing and upbringing (childhood socialisation about bodily functions). People travel in and out of stigma, dependent on social relationships with others including clinicians and tend to feel less stigmatised over time.

Conclusion:
Emotional control, social support and mastery over disease are key to stigma reduction. By identifying less resilient patients, clinicians can offer appropriate support, accelerating the patient’s path towards disease acceptance and stigma reduction.

Item Type: Article
Uncontrolled Keywords: inflammatory bowel disease; interpretive hermeneutic phenomenology; nurses; stigma; qualitative research; Goffman; Heidegger
Faculty / Department / Research Group: Faculty of Education & Health
Faculty of Education & Health > Department of Adult Nursing & Paramedic Science
Faculty of Education & Health > Health & Society Research Group
Last Modified: 16 May 2019 09:44
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: GREAT b
Selected for GREAT 2019: GREAT 3
URI: http://gala.gre.ac.uk/id/eprint/17854

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