P604 Stigma in Inflammatory Bowel Disease
L. Dibley*, C. Norton,1 E. Mason-Whitehead2
1King's College London, Florence Nightingale Faculty of Nursing & Midwifery, London, United Kingdom,
2University of Chester, United Kingdom
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 leading to faecal incontinence (FI) is a prominent feature of 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 (interpretive) phenomenological study explored the lived experience of IBD-related stigma.
Using purposive stratified sampling, 40 members of a national IBD charity were recruited. Participants did or did not experience FI, and did or did not feel stigmatised. This variation in the sample enabled exploration of the relationship between IBD, FI and stigma, and identification of features in the non-stigmatised which contributed to their transcendence of stigma. Unstructured individual interviews (digitally recorded and professionally transcribed) took place in consenting participants' homes between May and November 2012. Data was analysed using Diekelmann's hermeneutic method.
Eight 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 changes according to social setting and is fuelled by the antisocial nature of the disease. The more affected report more negative aspects of the themes outlined above. Many types of stigma are reported, including kinship stigma - that uniquely directed at the person by someone with whom they have a close biological or intimate bond. Certain characteristics or childhood experiences seem to contribute to stigma reduction and stigma resistance is most likely in those with a positive sense of control, a support network which suits their needs, and mastery over life and illness. These people recognise, expect and experience stigmatising attitudes from others but are not negatively affected by these.
IBD-related stigma occurs regardless of continence status, negatively affecting the chronic illness experience. Time, experience, and suitable support enhance stigma resilience. IBD nurses and clinicians can direct patients towards stigma resilience by helping those who struggle the most to identify ways of achieving a sense of control, building support networks, and becoming increasingly competent and masterful in managing their condition.