Stigma and Disclosure in Patients With Inflammatory Bowel Disease

Abstract

Stigma in patients suffering from chronic disease is associated with worse clinical outcomes and secondary medical issues such as depression, anxiety, and decreased quality of life. We believe various forms of stigma can have different clinical significance in patients with inflammatory bowel disease (IBD). With further insight and research, we suggest that these forms of stigma could be identified and targeted by researchers or clinicians to lessen the psychological disease burden in patients and to potentially improve their physical well-being. In the current review, we discuss public perceptions, knowledge, and stigmatization of IBD, the prevalence of various forms of IBD stigma, and the impact of such stigma on patient outcomes. We also discuss IBD disclosure, its association with stigma, and the tendencies and effects of such disclosures among youth and adult patient populations. We finish the review by highlighting possible modalities and research areas for future IBD interventions.

A Feeling of Otherness: A Qualitative Research Synthesis Exploring the Lived Experiences of Stigma in Individuals with Inflammatory Bowel Disease

“…Hiding the disease inhibited individual's ability to build effective support networks, a known outcome of concealment in other stigmatising health conditions [24,81]. It was also difficult and effortful to conceal IBD from others due to 'flare ups' and noticeable impacts on life such as missing social events, leaving people feeling vulnerable to 'involuntary' disclosure [82]. Disclosure was made more challenging by the lack of public knowledge and understanding about IBD [83] and societal norms which dictate that the bowels and faeces are not something that should be discussed in social settings [24].…”

“…This resulted in feelings of liberation and empowerment, supporting their recovery from social disconnection. Such voluntary and planned disclosure of stigmatised diseases is recognised as a crucially important factor in patient health and wellbeing [82]. However, it was not only disclosure of the diagnostic label but full disclosure of the impact of this disease which seemed key in feeling understood and connected to others.…”

“…The disparity between perceived and enacted stigma suggests individuals may overestimate the threat of stigma from others and raises the potential of re-examination of threat-appraisals. Navigating the complexities of the disclosure process and helping individuals with IBD decide when, to whom, and how to disclose their diagnosis will also be important [82]. Supportive disclosure may also have the additional benefit of improving interpersonal interactions and therefore reducing stigmatising attitudes of others [84].…”

Resilience as a Mediator of the Association Between Perceived Stigma and Quality of Life Among People With Inflammatory Bowel Disease

“…Patients with IBD tend to perceive illnessrelated stigma because of public misconceptions about etiology, variability in course, and fear of incontinence, which leads to concealment and social withdrawal (22,46). The concealment of disease could probably decrease communication and connections with others, increasing feelings of isolation and depression (47). However, since not all patients perceived stigma had a poor QOL, some authors pointed out that additional factors should be considered when explaining how psychosocial burden exerts adverse effects.…”

Perceived Stigma and Self-Efficacy of Patients With Inflammatory Bowel Disease-Related Stoma in China: A Cross-Sectional Study

“…However, post-ostomy changes and complications, such as altered body image, stool leakage, social isolation, ostomy-related dermatitis, sexual dysfunction, psychological distress, and perceived loss of control, result in decreased quality of life (6)(7)(8). Given these circumstances, patients with stoma are at risk of experiencing perceived stigma, which describes the degree to which individuals perceive discrimination directed at them or others (9). Perceived stigma is associated with decreases in self-efficacy and is a significant predictor of poorer outcomes in patients with IBD (10).…”