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dc.contributor.authorDibley, Lesley*
dc.contributor.authorNorton, Christine*
dc.contributor.authorWhitehead, Elizabeth*
dc.date.accessioned2017-12-07T10:32:17Z
dc.date.available2017-12-07T10:32:17Z
dc.date.issued2017-11-03
dc.identifier.citationDibley, L., Norton, C., & Whitehead, E. (2018). The experience of stigma in inflammatory bowel disease: An interpretive (hermeneutic) phenomenological study. Journal of Advanced Nursing, 74(4), 828-851. http://doi.org/10.1111/jan.13492
dc.identifier.issn0309-2402
dc.identifier.doi10.1111/jan.13492
dc.identifier.urihttp://hdl.handle.net/10034/620744
dc.descriptionThis is the peer reviewed version of the following article: Dibley, L., Norton, C., & Whitehead, E. (2018). The experience of stigma in inflammatory bowel disease: An interpretive (hermeneutic) phenomenological study. Journal of Advanced Nursing, 74(4), 828-851. http://doi.org/10.1111/jan.13492, which has been published in final form at https://doi.org/10.1111/jan.13492. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving
dc.description.abstractAim 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.
dc.language.isoenen
dc.publisherJohn Wiley & Sons Ltd
dc.relation.urlhttp://onlinelibrary.wiley.com/doi/10.1111/jan.13492/fullen
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/en
dc.subjectinflammatory bowel diseaseen
dc.subjectinterpretive hermeneuticen
dc.subjectphenomenologyen
dc.subjectphenomenologyen
dc.subjectstigma;en
dc.subjectGoffman;en
dc.subjectHeideggeren
dc.titleThe experience of stigma in inflammatory bowel disease: an interpretive (hermeneutic) phenomenological studyen
dc.typeArticleen
dc.identifier.eissn1365-2648
dc.contributor.departmentUniversity of Chester
dc.identifier.journalJournal of Advanced Nursingen
dc.date.accepted2017-10-16
or.grant.openaccessYesen
rioxxterms.funderKing's College, Londonen
rioxxterms.identifier.projectThis study was funded in part, data collection and transcriptions of the lead author'sen
rioxxterms.versionAMen
rioxxterms.licenseref.startdate2018-11-03
html.description.abstractAim 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.


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