Chronic illness stigma is a global public health issue. Most widely studied in HIV/AIDS and mental illness, stigmatization of patients living with inflammatory bowel disease (IBD), chronic autoimmune conditions affecting the digestive tract, has garnered increasing attention in recent years. In this paper, we systematically review the scientific literature on stigma as it relates to IBD across its three domains: perception, internalization, and discrimination experiences. We aim to document the current state of research, identify gaps in our knowledge, recognize unique challenges that IBD patients may face as they relate to stigmatization, and offer suggestions for future research directions. Based on the current review, patients living with IBD may encounter stigmatization and this may, in turn, impact several patient outcomes including quality of life, psychological functioning, and treatment adherence. Significant gaps exist related to the understanding of IBD stigma, providing opportunity for future studies to address this important public health issue.

/pdf/a-systematic-review-of-disease-related-stigmatization-in-1zwmj2w7v5.pdf

A systematic review of disease-related stigmatization in patients living with inflammatory bowel disease

Objectives This qualitative study examines how and why adolescents living with visible and invisible chronic illnesses choose to share their condition with individuals within their social environments. Methods A sample of 25 adolescents were recruited from five subspecialty services: Spina bifida, rheumatology, cardiology, cystic fibrosis, and renal transplant/dialysis. Recruits completed a semi-structured interview designed to explore: (1) to whom adolescents disclose their conditions, (2) motivation and conditions under which they disclose, (3) content of disclosure, and (4) barriers to disclosure. Results Family members closely connected to treatment or management are most likely to be primary targets of disclosure. Regardless of social network size, respondents disclosed their illness to few peers. Common reasons for disclosure were perceived trust and shared experience with illness and disability. Reasons for withholding disclosure include perceived fear of rejection, pity, and perceptions of being seen as vulnerable or different. Discussion Disclosure was found to be influenced by (a) the visibility of a condition, (b) the anticipated response from the recipient, (c) practical needs, and (d) a decision that disclosure is justified. These findings inform clinical practice, warrant the need for further study, and insinuate practical solutions to combat the socio-emotional impact of nondisclosure among adolescents.

Living a secret: Disclosure among adolescents and young adults with chronic illnesses.

https://opus.lib.uts.edu.au/bitstream/10453/127851/3/Living%20with_am.pdf

Living with Inflammatory Bowel Disease: A review of qualitative research studies.

Self-management, including medication adherence, is associated with improved health and outcomes for patients with inflammatory bowel disease. The concept of self-management is complex, but can be divided into those aspects that involve the individual patient, those that involve the provider-patient relationship, and those that encompass the social environment. At the individual level, enhancing problem-solving skills and self-efficacy have both been shown to improve self-management tasks, particularly adherence to treatment. However, it is critical to consider these domains from a lifespan perspective because these processes by which self-management can be improved are distinct for children, adolescents, young adults, and adults. A particular emphasis is placed on strategies to improve self-management of older adolescents and young adults as they transition from pediatric to adult providers. The review concludes with recommendations for providers, including rationale and techniques for assessing and promoting patient self-efficacy, encouraging the development of problem-solving skills, improving the patient-provider relationship, and enhancing social support. Providers are encouraged to utilize elements of problem-solving skills training, engage in collaborative relationships with their patients, and offer their patients recommendations for how to increase the quality of their social support networks as ways of increasing overall self-management.

/pdf/self-management-in-patients-with-inflammatory-bowel-disease-4lrhs0wxc3.pdf

Self-management in patients with inflammatory bowel disease: strategies, outcomes, and integration into clinical care.

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 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.

/pdf/the-experience-of-stigma-in-inflammatory-bowel-disease-an-40x309mhc3.pdf

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

For young adults with inflammatory bowel disease (IBD), perceived stigma has been found to be a salient concern. Drawing on interviews with individuals with IBD aged 18-29 (n = 16), this article uses rhetorical discourse analysis to explore how stigma is discursively constructed by young adults, with a focus on the moral underpinnings of the participants' talk. Their representations showed both felt stigma and enacted stigma; principally related to the perceived taboo surrounding the symptoms of their condition, which often led to the non-disclosure or concealment of the condition. The different ways in which stigma is manifested in the accounts present a challenge to recent arguments questioning the relevance of this concept in chronic illness research, though it was found that it is not adequate to look at stigma alone and, given the unstable nature of IBD, negotiating stigma in relation to possible charges of deviance is a pertinent issue for these young adults. For instance, non-disclosure because of shame could result in individuals experiencing blame. Accounts were constructed through a range of discursive strategies, allowing the participants to present themselves in morally appropriate ways throughout. Suggestions are made about future directions in addressing stigma and deviance in relation to this cohort.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/1467-9566.12148

Stigma, deviance and morality in young adults' accounts of inflammatory bowel disease.

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Stigma, deviance and morality in young adults' accounts of inflammatory bowel disease.