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

摘要

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 stigmatization, 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 stigmatized 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 well‐being and upbringing (childhood socialization about bodily functions). People travel in and out of stigma, dependent on social relationships with others including clinicians and tend to feel less stigmatized 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.