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

Figures & data

Figure 1 PRISMA flow diagram for systematic review of stigmatization in inflammatory bowel diseases.

Abbreviations: IBD, inflammatory bowel disease; PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Table 1 Relevant studies of inflammatory bowel disease (IBD) stigmatization

Authors	Study description	No of subjects	Stigma measured	Key findings
Bernhofer et al^Citation92	Qualitative interview of pain experiences during hospital stay	16	Perceived	Labeled as difficult, needy, drug-seeking, unable to tolerate pain properly
Czuber-Dochan et al^Citation94	Qualitative interview health care professionals perceptions of IBD-related fatigue	20	Enacted	Frustration and poor understanding of IBD-related fatigue
Dibley and Norton^Citation90	Mixed qualitative interview, cross-sectional survey of experiences with fecal incontinence	611	Perceived	Concerns about how others view IBD, increased social withdrawal/isolation to protect from potential shame
Frohlich^Citation99	Qualitative interview of coping with IBD-related stigma	17	Perceived	Feelings of guilt from being a burden, feeling of relief after disclosure to safe others
Saunders^Citation98	Qualitative interview of stigma experiences	4	Perceived	Nondisclosure due to embarrassment from symptoms, challenges related to passing as normal
Czuber-Dochan et al^Citation93	Qualitative interview of fatigue experiences	46	Perceived	Health care providers have little understanding of IBD-related fatigue
Danielsen et al^Citation110	Qualitative interview of impact of ostomy on quality of life	15	Internalized	Positive experiences with ostomy, feeling in control of disease management
Taft et al^Citation113	Cross-sectional survey of internalized stigma/stigma resistance	191	Internalized	33% report internalized stigma, alienation, and social withdrawal most common; the majority engage in stigma resistance behaviors
Taft et al^Citation87	Cross-sectional survey comparing perceived stigma in irritable bowel syndrome (IBS) and IBD	496	Perceived	IBS patients report greater stigma than IBD, larger impact on patient outcomes for stigmatized IBD patients
Taft et al^Citation42	Cross-sectional survey measuring perceived stigma	211	Perceived	84% report some perceived stigma. Stigma increases psychological distress, decreases quality of life
Voth and Sirois^Citation109	Cross-sectional survey of self-blame and adjustment	259	Internalized	Self-blame about IBD correlates with poorer outcomes
Smith et al^Citation111	Cross-sectional survey of stigma of ostomy	195	Internalized	Ostomy contributes to feelings of shame, self-stigma
Finlay et al^Citation101	Cross-sectional survey of racial minority experiences	148	Perceived	Caucasians are more likely to disclose IBD status than African-Americans
Looper and Kirmayer^Citation105	Cross-sectional survey of felt stigma in functional vs organic illnesses	89	Perceived	Perceived stigma is significantly correlated with poorer psychological functioning; no difference in stigma perception between IBS and IBD
Krause^Citation91	Qualitative interview of social representations of IBD	19	Internalized	Many patients report feelings of shame related to their IBD diagnosis and symptoms
Daniel^Citation26	Qualitative interview of young adult experiences	5	Perceived, enacted, internalized	Feel others think they use IBD for secondary gain, poor body image/damaged, feel different, feel discredited, shame, concerns about disclosure
de Rooy et al^Citation95	Cross-sectional survey of IBD patient concerns	241	Perceived	Older patients, women, patients with ulcerative colitis, lower educational level report greater stigma
Levenstein et al^Citation25	Cross-sectional survey of IBD patient concerns	2,002	Perceived, internalized	Body stigma, feeling dirty, concerns of being a burden reported in patients living in multiple countries
Moskovitz et al^Citation106	Cross-sectional survey of social support and surgical outcomes	86	Perceived	Poor social support is correlated with worse surgical outcomes
Mayberry^Citation115	Cross-sectional survey of personnel managers and workplace discrimination	195	Enacted	30% would not provide leave for outpatient care. IBD impacts promotion decisions in 8% of managers. 60% would make accommodations
Moody et al^Citation104	Cross-sectional survey of social implications of childhood IBD	64	Perceived	50% of students report teachers unsympathetic toward IBD
Mayberry et al^Citation102	Cross-sectional survey of workplace/education discrimination	116	Enacted	50% of patients with Crohn’s disease had trouble finding work compared to 24% of controls
Moody et al^Citation100	Cross-sectional survey of employer attitudes toward IBD	53	Enacted	25% of employers would not continue to employ people if they developed IBD, 30% would not provide time off work to attend appointments
Drossman et al^Citation23	Questionnaire validation of IBD patient concerns	991	Perceived	Body image, concerns about being a burden, feeling dirty or smelly common concerns
Salter^Citation108	Qualitative interview of stigma of ostomy	7	Internalized	Ostomy increases self-stigma, shame, body image issues
Wyke et al^Citation103	Cross-sectional survey of workplace discrimination	170	Perceived, enacted	81% disclosed IBD, 80% coworkers, 77% employers generally helpful about IBD

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