Moving beyond perceptions: internalized stigma in the irritable bowel syndrome

• Published in: Neurogastroenterology and motility Vol. 26; no. 7; pp. 1026 - 1035
• Main Authors: Taft, T. H., Riehl, M. E., Dowjotas, K. L., Keefer, L.
• Format: Journal Article
• Language: English
• Published: England Wiley Subscription Services, Inc 01.07.2014
• Subjects: Adult; Anxiety - psychology; Depression - psychology; Female; Humans; Illnesses; internalized stigma; Irritable bowel syndrome; Irritable Bowel Syndrome - psychology; Male; Middle Aged; patient outcomes; perceived stigma; Perceptions; Psychiatric Status Rating Scales; Quality of Life - psychology; Self Concept; Severity of Illness Index; Social research; Social Stigma; Surveys and Questionnaires; Young Adult; patient outcomes; perceived stigma; internalized stigma; irritable bowel syndrome
• ISSN: 1350-1925; 1365-2982
• DOI: 10.1111/nmo.12357

Background Internalized stigma (IS) is an important construct in the chronic illness literature with implications for several patient reported outcomes. To date, no study exists evaluating IS in patients with the irritable bowel syndrome (IBS). Methods Two hundred and forty three online and clinical participants completed the following questionnaires: the IS scale for mental illness (ISMI; modified for IBS), perceived stigma scale for IBS, NIH‐PROMIS Anxiety and Depression Scales, IBS quality of life scale, and the Perceived Health Competence Scale. Demographical and clinical data were also collected. Key Results The modified ISMI was reliable and valid in this population. Participants reported both perceived and IS. Alienation was most reported, followed by social withdrawal and discrimination experiences. IS predicted 25–40% of the variance in psychological functioning, quality of life, healthcare utilization, and health competence when controlling for stigma perception and disease variables. IBS patients perceived more stigma from personal relations than healthcare providers. Hispanic participants reported more perceived stigma, indicating there may be cultural differences in IBS‐related stigma experience. Symptom severity, disruptiveness, and treatment choices are also implicated in stigma perception and internalization. Conclusions & Inferences Patients with IBS report both perceived and IS with alienation most reported. However, IS significantly predicts several patient outcomes when controlling for PS. Cultural and illness traits may influence how stigma is perceived and internalized. Future research is warranted.