The experience of stigma in people with inflammatory bowel disease with or without incontinence:a hermeneutic phenomenological study - A thesis submitted in partial fulfilment of the University’s requirements for the Degree of Doctor of Philosophy\ud September, 2014

Doctoral thesis English OPEN
Dibley, Lesley ; Faculty of Society and Health, Buckinghamshire New University, High Wycombe, UK ; Coventry University

A stigma is ‘an attribute that is deeply discrediting,’ often contravening social norms, and perceived by others as being undesirable. Inflammatory Bowel Disease (IBD) is a chronic illness characterised by symptoms of diarrhoea, urgency, and vomiting occurring in a relapsing and remitting pattern. Regular or temporary loss of bowel control is a prominent feature of the disease and may lead to stigmatisation through infringement of social hygiene rules. Although stigma in IBD has been measured in quantitative studies, there is a dearth of qualitative evidence. This Heideggerian (hermeneutic) phenomenological study explores the lived experience of IBD-related stigma.\ud Using purposive stratified sampling, 40 members of a national IBD charity were recruited. Participants did or did not experience faecal incontinence, and did or did not feel stigmatised. Unstructured individual interviews (digitally recorded and professionally transcribed) took place in consenting participants’ homes between May and November 2012. Data were analysed using Diekelmann’s hermeneutic method.\ud Seven relational themes (present in some transcripts) and three constitutive patterns (present in all transcripts) emerged. IBD-related stigma is a complex experience, mostly of anticipated or perceived stigma, which often decreases over time. Stigma changes according to social settings and relationships, but arises from the challenges the disease presents in maintaining social privacy and hygiene rules. Stigma resilience appears most likely in those with a positive sense of control, a support network (particularly of close and intimate others) which suits their needs, and mastery over life and illness.\ud IBD-related stigma occurs regardless of continence status and can cause emotional distress. Time, experience, and robust social support enhance stigma resilience. Further research is needed to confirm features which enable resilience, and to develop stigma-reduction strategies that will promote resilience in this patient group.
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