Article

Moving beyond perceptions: Internalized stigma in the irritable bowel syndrome

Neurogastroenterology & Motility

May 2014
26(7)

DOI:10.1111/nmo.12357

Authors:

Tiffany H Taft

Northwestern University

Megan E. Riehl

University of Michigan

Laurie Keefer

Icahn School of Medicine at Mount Sinai

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 ResultsThe 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 & InferencesPatients 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.

EXAMINING THE IMPACTS OF VISIBILITY AND A LEARNED DIAGNOSIS ON STIGMA AGAINST ROMANTIC PARTNERS WITH IRRITABLE BOWEL SYNDROME: AN EXPERIMENTAL STUDY OF STEREOTYPICAL, AFFECTIVE, AND BEHAVIORAL RESPONSES TO PARTNERS' SYMPTOMS

Thesis

Full-text available

Nov 2024

Annelise Klettner

Irritable Bowel Syndrome (IBS) is a functional gastrointestinal disorder (FGID) characterized by alterations in bowel habits without biological markers. Many patients diagnosed with IBS report experiencing stigma of their condition due to the negative social implications of IBS and the illness historically viewed as psychosomatic. The literature addresses how IBS influences the experiences of patients and their perceptions of stigma; however, less research has focused on the perspective of observers, and even less on the visibility of IBS- namely, the social taboo surrounding bowel dysfunction, and how it affects reactions and decisions toward individuals with IBS, specifically in the context of romantic relationships. The current investigation evaluated the effect of the partner’s IBS visibility and diagnosis on four types of reactions towards dating partners with the disorder in a non-clinical sample of adults: 1) perceived stigma, 2) endorsed stereotypes, 3) affective states, and 4) behavioral responses. Additionally, the study explored partner gender differences and their role in shaping these reactions under visible and diagnosis aspects of the condition. Participants (N=435) were randomly assigned to one of four hypothetical dating scenarios that manipulated the visibility and diagnosis of the IBS dating partner. Subsequently, participants reported the gender of their hypothetical partner and reactions regarding their relationship with the partner. The findings from successfully manipulated participants revealed that neither the partner’s diagnosis nor gender had significantly influenced the level of stigma participants had for the partner. However, the visibility of their condition significantly increased perceived stigma and negative stereotyping, affective states, and behavioral reactions towards the IBS dating partner, with these reactions being stronger when the partner had no diagnosis. Theoretical and practical implications of the findings are discussed.

Improving Clinician-Patient Communication Alleviates Stigma in Patients With Functional Dyspepsia Receiving Antidepressant Treatment

Article

Full-text available

Jan 2022

Background/aims: Antidepressants are effective in patients with functional dyspepsia (FD). However, stigma associated with FD and antidepressants may affect treatment adherence. This study aims to explore possible communication strategies to alleviate stigma and improve adherence in patients with FD. Methods: In this randomized, single-center, and single-blind trial, 160 patients with FD initiating antidepressant treatment were recruited. Different communication strategies were performed when prescribing antidepressants. Participants in Group 1 were told that brain is the "headquarters" of gut, and that antidepressants could act as neuromodulators to relieve symptoms of FD through regulating the functions of gut and brain. Participants in Group 2 were told that antidepressants were empirically effective for FD. Stigma scores, medication-related stigma, treatment compliance, and efficacy were analyzed. Results: After 8-week antidepressant treatment, the proportion of patients with FD with decreased stigma scores in Group 1 was significantly higher than in Group 2 (internalized stigma: 64.10% vs 12.00%; perceived stigma: 55.13% vs 13.33%; P < 0.01). Medication-related stigma was lower in Group 1 than in Group 2 (P < 0.05 for 3 of 4 questions). Concurrently, patients in Group 1 had better treatment compliance (0.71 ± 0.25 vs 0.60 ± 0.25, P < 0.01) and efficacy. In Group 1, participants with decreased post-treatment stigma scores showed better treatment compliance and efficacy than those with non-decreased scores. Decrease in stigma scores positively correlated with treatment compliance. Conclusion: Improving knowledge of patients with FD of the disease and antidepressants via proper communication may be an effective way to alleviate stigma and promote adherence.

Experiences of ethnic minority patients who are living with a primary chronic bowel condition: a systematic scoping review with narrative synthesis

Article

Full-text available

Aug 2021
BMC GASTROENTEROL

Background Prevalence of chronic gastrointestinal diseases has been rising amongst ethnic minority populations in Western countries, despite the first-generation migrants originating from countries of low prevalence. Differences caused by genetic, environmental, cultural, and religious factors in each context may contribute towards shaping experiences of ethnic minority individuals living with primary bowel conditions. This review aimed to explore the experiences of ethnic minority patients living with chronic bowel conditions. Methods We conducted a systematic scoping review to retrieve qualitative, quantitative, and mixed methods studies from eight electronic databases, and manually searched reference lists of frequently cited papers. Results Fourteen papers met the inclusion criteria: focussing on inflammatory bowel disease, irritable bowel syndrome, and coeliac disease. Core themes were narratively analysed. South Asians had limited understanding of inflammatory bowel disease and coeliac disease, hindered by language and literacy barriers, particularly for older generations, suggesting that culturally relevant information is needed. Family support was limited, and Muslim South Asians referred to religion to understand and self-manage inflammatory bowel disease. Ethnic minority groups across countries experienced: poor dietary intake for coeliac disease and inflammatory bowel disease, cultural conflict in self-managing diet for inflammatory bowel disease which increased anxiety, and there was a need for better quality of, and access to, healthcare services. British ethnic minority groups experienced difficulties with IBD diagnosis/misdiagnosis. Conclusions Cultural, religious, and social contexts, together with language barriers and limited health literacy influenced experiences of health inequalities for ethnic minority patients living with chronic bowel diseases.

Experiences of Ethnic Minority Patients Who Are Living with a Primary Bowel Condition or Bowel-Related Symptoms of Other Chronic Diseases: A Systematic Review

Preprint

Full-text available

Feb 2021

Background: Prevalence of chronic gastrointestinal diseases has been rising amongst ethnic minority populations in Western countries, despite the first-generation migrants originating from countries of low prevalence. Differences caused by genetic, environmental, cultural, and religious factors in each context may contribute towards shaping experiences of ethnic minority individuals living with primary bowel conditions. This review aimed to explore the experiences of ethnic minority patients’ living with chronic bowel illnesses and bowel-related symptoms of other chronic diseases. Methods: We systematically searched for qualitative, quantitative, and mixed methods studies on eight electronic databases and manually searched reference lists of frequently cited papers. Fifteen papers met the inclusion criteria: focussing on inflammatory bowel disease, irritable bowel syndrome, coeliac disease and prostate cancer survivors experiencing bowel symptoms. Results: Core themes were narratively analysed. South Asians had limited understanding of their illness and language and literacy barriers, particularly older generations, suggesting a need for culturally relevant inflammatory bowel disease and coeliac disease information. Family support was limited, and Muslim South Asians referred to religion to understand and self-manage inflammatory bowel disease. Ethnic minority groups across countries experienced poor dietary intake for coeliac disease and inflammatory bowel disease, cultural conflict in self-managing diet for inflammatory bowel disease, increased anxiety, and the need for better quality of, and access to, healthcare services. UK ethnic minorities had problems with IBD diagnosis/misdiagnosis. Self-efficacy positively impacted bowel symptoms in prostate cancer survivors. Conclusions: Cultural, religious, and social contexts, together with language barriers and limited health literacy influenced experiences of health inequalities for ethnic minorities with chronic bowel diseases.

The impact of stigma on medication adherence in patients with functional dyspepsia

Article

Full-text available

Jul 2020
NEUROGASTROENT MOTIL

Background Psychological factors contribute to the pathogenesis of functional dyspepsia (FD). Antidepressant agents are beneficial in treatment of refractory FD. However, their efficacy is greatly hindered by the poor treatment adherence. Stigma is present in patients with chronic diseases or mental disorders and could affect adherence. The present study was aimed to evaluate stigma prevalence in FD patients and to explore the impact of stigma on treatment adherence to antidepressants. Methods Functional dyspepsia patients unsatisfied with the regular first‐line treatment and received newly initiated antidepressant medicine were recruited and subjected to antidepressant treatment for 8 weeks. Stigma scales and symptom scores of dyspepsia, depression, and anxiety were analyzed before and after treatment. Associations between stigma and medication adherence were evaluated. Key results One hundred and ten of the enrolled 138 participants reported minimal disease‐related internalized stigma, and 28 reported mild stigma before antidepressant therapy. Male gender, lower education, and higher scores of dyspepsia, depression, and anxiety were predictors of stigma before treatment. The mean stigma scores increased after 8‐week antidepressant treatment. A proportion (36.4%‐89.9%) of patients showed stigma attached to antidepressant therapy in the 4‐question survey. Post‐treatment stigma scores negatively correlated with treatment adherence and efficacy. Patients with decreased post‐treatment stigma scores displayed better medication adherence and symptom improvement compared to those with elevated or unaltered post‐treatment stigma scores. Conclusions Patients with refractory FD report stigma attached to the disease and antidepressants. It is an obstacle to treatment adherence and efficacy of antidepressant medication in FD therapy.

Validation of the Health-Related Felt Stigma and Concealment Questionnaire

Article

Full-text available

May 2020
J PEDIATR PSYCHOL

Objective: Stigma is associated with many health conditions, including chronic pain. Research on health-related stigma is limited by the lack of validated instruments that distinguish among various stigma-related constructs. We aimed to develop and validate such a measure for pediatric functional abdominal pain (FAP). Felt stigma (FS) was defined as comprising both perceived and internalized stigma. Stigma concealment (SC) was defined as efforts by stigmatized individuals to prevent others from learning of their condition. Methods: Using a theory-driven approach, we adapted items from existing self-report measures of stigma to construct the health-related FS and Concealment Questionnaire (FSC-Q). Patients with FAP (N = 179, ages 11-17) completed the preliminary FSC-Q and health-related measures hypothesized to be associated with stigma. Cognitive interviewing and exploratory factor analysis (EFA) informed the final version of the measure. Results: EFA identified a 2-factor model comprised of FS and SC. The FS and SC scales exhibited good internal consistency and construct validity. Consistent with study hypotheses, both factors were significantly associated with anxiety, depression, pain catastrophizing, pain threat, physical symptoms, and pain interference/disability. Higher FS was associated with higher mental healthcare utilization. The subset of participants meeting criteria for irritable bowel syndrome (IBS) reported higher FS and SC compared with those without IBS. Conclusion: The FSC-Q may help advance research on health-related stigma in FAP and other chronic health conditions by allowing for assessment of distinct stigma-related constructs.

Internalized Stigma in Patients with Eosinophilic Gastrointestinal Disorders

Article

Full-text available

Mar 2020
J CLIN PSYCHOL MED S

The aim of the current study is to evaluate internalized stigma in individuals diagnosed with an eosinophilic gastrointestinal disorder (EGID) and its impact on psychosocial and health-related outcomes. The final study sample consisted of 149 patients with a self-reported EGID diagnosis for at least 6 months. Participants completed measures evaluating internalized stigma, disease-specific quality of life, emotional distress (anxiety, depression) and answered questions regarding healthcare utilization. Overall, increased internalized stigma was associated with decreased disease-specific quality of life, and increased anxiety and depression. In addition, participants with greater overall internalized stigma felt that treatments were less effective, and the internalized stigma subscales of alienation and discrimination were associated with increased outpatient visits and endoscopies, respectively. Providers working with EGID patients should assess for signs of internalized stigma, such as social withdrawal and alienation. Psychogastroenterology services that deliver evidence-based psychological interventions may reduce some of the negative impacts of internalized stigma.

Perceived Stigma and Its Association With Participation Following Traumatic Brain Injury

Article

Full-text available

Jan 2018

Individuals with traumatic brain injury (TBI) may experience stigma in the form of negative attitudes or discriminatory behaviors, which are external actions directed toward the individual with the disability. Awareness of these negative attitudes, behaviors, and stereotypes related to one’s condition is known as perceived stigma. Perceived stigma has been shown to be problematic in other populations because of its association with various negative mental and physical health outcomes. However, further research is needed on the factors related to perceived stigma in individuals with TBI as well as its association with community participation. The present study explored the associations of experiential and affective factors with perceived stigma in a sample of 504 individuals with TBI as well as the association of perceived stigma with community participation. Independent variables included experiential factors (preinjury years of education, preinjury occupation) and postinjury affective factors (depression, anxiety); demographic characteristics (age, gender, race/ethnicity) and injury severity served as covariates. Outcome variables included perceived stigma and community participation. Results of structural regression modeling revealed that affective factors were associated with perceived stigma, which was associated with community participation. Affective factors were associated with community participation only when perceived stigma was removed from the model. The findings of this research hold significant treatment implications for individuals with TBI such that modifying evidence-based practices to include consideration of perceived stigma may increase community participation for individuals with TBI.

Stigma perceptions in patients with eosinophilic gastrointestinal disorders

Article

Jul 2017

This study aims to evaluate the presence of perceived stigma in people diagnosed (self-reported) with an eosinophilic gastrointestinal disorder and examine the relationship to the patient's health-related quality of life and additional psychosocial patient-reported outcomes. One hundred forty-nine patients diagnosed for a minimum of 6 months participated in the study. Eligible participants completed questionnaires to assess perceived stigma, psychological functioning, and health-related quality of life. Perceived stigma was moderately associated with a decrease in total health-related quality of life and perceived treatment efficacy. Additionally, greater perceived stigma was positively correlated with an increase in anxiety, depression, and healthcare utilization. The study demonstrates the influence of perceived stigma on several aspects of health-related quality of life in patients with these illnesses. As such, it is important for health professionals to be aware of stigma in patients diagnosed with an eosinophilic gastrointestinal disorder.

Stigmatization toward irritable bowel syndrome and inflammatory bowel disease in an online cohort

Article

Aug 2016
NEUROGASTROENT MOTIL

Background: Stigma is associated with many negative health outcomes. Research has examined perceived and internalized stigma in individuals with irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD), but less has been done to evaluate levels of enacted stigma associated with these conditions. The aim of this study was to evaluate the presence of enacted stigma toward IBS and IBD in the general population compared to an adult-onset asthma (AOA) control group. Methods: Participants were recruited via social media and a research-dedicated website and completed all measures online. Participants were randomized to one of six clinical vignettes: (i) IBD male, (ii) IBD female, (iii) IBS male, (iv) IBS female, (v) AOA male, or (vi) AOA female. Participants read the assigned vignette and then completed measures of emotional empathy, level of familiarity, and enacted stigma. Key results: Participants reported higher levels of enacted stigma toward IBS compared to both IBD and AOA. No differences in stigma were found between IBD and AOA. Higher levels of familiarity were most strongly correlated with reduced IBD-related stigma, with weaker but still significant correlations between level of familiarity and IBS and AOA. Higher levels of emotional empathy were associated with reduced stigma for IBD, IBS, and AOA. Conclusions & inferences: Individuals with IBS experience greater levels of enacted stigma compared to IBD and AOA. This finding is consistent with previous research that has shown greater levels of perceived and internalized stigma in IBS compared to IBD.

Practical Review on the Impact of Celiac Disease on the Patient

Article

Full-text available

Feb 2023

Celiac disease (CD) is a multisystem immune-mediated disorder resulting in enteropathy of the small intestine with the ingestion of gluten, in genetically susceptible individuals. This condition impact 1% of the population and can result in the development of other conditions such as chronic fatigue, anemia, osteoporosis, aphthous stomatitis, elevated liver enzymes, joint pain, infertility, peripheral neuropathy, and epilepsy. In this review, we outline the clinical presentation of CD, the physiological differences between CD and non-celiac gluten sensitivity, proper management and the need for thorough patient education to increase adherence to a gluten free diet and reduce GI symptoms.

Cultural considerations in gastroenterology: barriers to care and a call for humility and action

Article

Full-text available

Oct 2024

Culture is a broadly defined term and patients’ cultural identity may show up in the medical setting in visible and invisible ways. In this paper, we aim to discuss cultural considerations in gastrointestinal (GI) care. Our definition of “culture” reflects the commonly ascribed race and ethnicity and will also discuss other minority groups such as sexual and gender minorities (SGMs). We will review what is known about rates of GI conditions across various cultural groups, acknowledging that our data reflect inequity in representation. While the healthcare system has overall shown an increased awareness of the role that systemic and institutional racism plays in affecting patient care, this has not been widely studied in the context of GI though has a profound impact. Multiple factors affect the interaction between patients’ cultural identities and engagement in and quality of GI care. Stigma related to cultural factors or cultural intersection has the capacity to shape if, when, and how medical care is approached, received and applied. Conditions and symptoms in GI are often complicated; health literacy (HL) is the ease with which patients can navigate getting from diagnosis to treatment and engage in self-management and also interacts with cultural context. Some aspects of a patient’s experience, background and skill are imperceptible and require the healthcare provider to attend to treatment with humility, respect and self-reflection if they wish to effectively engage. We introduce the concept of cultural humility to GI and offer practical suggestions for those providing clinical care. We also call for future investment in a diverse healthcare delivery system and continued legislation to promote social equity.

Perceived Stigma in Patients with Autoimmune Hepatitis

Article

Full-text available

Dec 2023
J CLIN PSYCHOL MED S

Perceived stigma (PS) adversely impacts psychosocial and disease outcomes in patients with chronic liver diseases (CLD), and those with autoimmune hepatitis (AIH) may be at risk for PS given inaccurate assumptions about the origin of their diagnosis. The aims of the current study are to describe the frequency of PS in patients with AIH, compare rates of PS in AIH to rates of PS in primary biliary cholangitis (PBC) and CLD, and examine demographic correlates of PS. 262 adults with AIH (95% female, Mage = 51.53 years) completed online questionnaires on demographics, disease information, and PS. 54–68% reported PS with themes of selective disclosure, non-disclosure, or hiding diagnosis. PS was higher in those with AIH compared to those with PBC, but lower than those with various CLD. Age was inversely related to PS. Given the results, provider screening of PS and integration of clinical health psychologists may be helpful for identifying PS in patients with AIH.

Stigma and Efficacy of Zhizhu Kuanzhong Capsules Versus Doxepin in the Treatment of Refractory Functional Dyspepsia: A Randomized Controlled Trial

Article

Jul 2023

Background/aims: Stigma related with antidepressants is prevalent in patients with functional dyspepsia. It affects medication compliance and efficacy. Herbal medicine acquired a deep-rooted cultural identity in relieving dyspeptic symptoms in Asians. The research was designed to compare the effectiveness of Zhizhu Kuanzhong capsules (ZZKZ) versus doxepin hydrochloride (doxepin) on alleviating stigma and medication nonadherence among patients with refractory FD (rFD). Methods: Patients with rFD from February 2021 to February 2022 were randomly allocated to receive either doxepin (n = 56) or ZZKZ (n = 57) combined with omeprazole for 4 weeks. Medication possession ratio (MPR), the disease- and medication-associated stigma were analyzed. The scales were utilized to assess dyspeptic symptoms (Leeds Dyspepsia Questionnaire) and psychological conditions (Generalized Anxiety Disorder Questionnaire and Patient Health Questionnaire). Results: The MPR values for ZZKZ were significantly higher than those for doxepin (P < 0.001). The stigma scores decreased in ZZKZ group while increased in doxepin group compared to baseline after treatment. The proportion of patients showing ZZKZ-associated stigma was significantly lower than doxepin-associated stigma (P < 0.001). The MPR values were negatively correlated with post-treatment stigma scores in both groups (P < 0.001). Dyspeptic symptoms and psychological condition were improved in both groups after treatment, with no significant difference on post-treatment Leeds Dyspepsia Questionnaire, Generalized Anxiety Disorder Questionnaire, or Patient Health Questionnaire scores between 2 groups. Conclusion: ZZKZ is superior to doxepin in alleviating stigma and medication non-adherence, with comparable efficacy in improving dyspeptic symptoms and psychological condition of patients with rFD.

Article

Full-text available

Jul 2022
J HEALTH PSYCHOL

The objective of this study was to explore stigma related to breast cancer among Druze women and men and identify factors associated with low screening rates among Druze women. A sample of 270 Druze women and men completed an online questionnaire adapted to detect breast cancer stigma and internalized breast cancer stigma. Independent samples t-test results showed higher scores for men compared to women, at a significant level, on four of the Breast Cancer Stigma scales: awkwardness, avoidance, policy opposition, and personal responsibility. Independent samples t-test results also showed higher scores for men compared to women, at a significant level, on two of the Internalized Breast Cancer Stigma scales: stereotype endorsement and discrimination experience. These results suggest a need for psychoeducation about breast cancer screening for minority groups such as the Druze, with male partners of women who are diagnosed with breast cancer being the main target recipients.

Stigma experiences of patients living with gastroparesis

Article

Full-text available

Aug 2021
NEUROGASTROENT MOTIL

Introduction Stigmatization toward chronic digestive diseases is well documented. Patients perceive others hold negative stereotypes toward their disease and may internalize these beliefs as true. Because of this, stigmatization is associated with poor outcomes across disease‐related and psychosocial domains. No study to date evaluates stigmatization toward patients living with gastroparesis (GP), a poorly understood disease affecting gastric motility. We aimed to gain deep understanding of stigma in patients living with gastroparesis. Methods Patients with GP were recruited from two university‐based gastroenterology practices as well as patient advocacy support groups. Participants underwent a semi‐structured qualitative interview about their experiences with stigma related to their GP diagnosis, which were audio‐recorded and transcribed to text for analysis using a grounded theory approach. Major themes with representative quotations were documented. Results Twenty‐three patients participated. The majority were White, female, with idiopathic GP under the care of a gastroenterologist. All patients reported stigma related to GP. Seven major themes were found: stigma from healthcare providers, stigma within interpersonal relationships, GP as an invisible disease, blame, unsolicited suggestions on how to manage disease, disclosure, and stigma resistance. Conclusions This is the first study to describe stigma experiences in patients with GP. The results suggest patients experience considerable stigmatization toward their condition from multiple sources. Patients also demonstrated resistance to negative beliefs, which can serve as a protective factor for the negative effects of disease stigma. Clinicians should be aware of stigma in GP patients, including their own potential internal biases and behaviors.

The Path Forward: Assessing a Pilot Competency‐Based Curriculum on Disorders of Gut‐Brain Interaction for Gastroenterology Trainees

Article

Full-text available

May 2025
NEUROGASTROENT MOTIL

There is the lack of representation of disorders of gut‐brain interaction in postgraduate curricula in both Europe and the United States, resulting in a knowledge gap and discomfort of general gastroenterologists in managing these highly prevalent conditions. We report findings from a pilot competency‐based curriculum focused on principles of managing DGBI across six U.S. adult fellowship programs with no pre‐existing curricula and found that a didactic based curriculum can significantly improve medical knowledge; however, there was no significant change in attitudes towards patients with DGBI. This mini review contextualizes these findings and highlights practical challenges surrounding DGBI content integration during gastroenterology training. We propose future initiatives such as scalable curricula on a national level that consciously focus on the intentional cultivation of the attitudes and skills to improve patient outcomes as well as separate initiatives to ensure continuous faculty development.

The Association Between Weight Stigma and Gastrointestinal Symptoms and Irritable Bowel Syndrome

Article

Full-text available

Apr 2025

Both experiences of weight stigma (EWS) and the internalization of weight bias (IWB) have been linked to negative health outcomes. The relationship between weight stigma (EWS and IWB) and gastrointestinal (GI) symptoms, however, has not yet been explored. The aim of the present study was to assess the associations between weight stigma (EWS and IWB) and general GI symptoms and irritable bowel syndrome (IBS). Participants (N = 406) were recruited through a Qualtrics research panel, approximating the body mass index distribution across adults in the United States. Five general GI symptom clusters (i.e., epigastric pain, diarrhea and discomfort, reflux, nausea and vomiting, constipation) were assessed, along with total GI symptom burden and symptoms consistent with IBS. In hierarchical regression analyses, EWS and IWB showed significant positive associations with each GI symptom cluster (epigastric pain, diarrhea and discomfort, reflux, nausea and vomiting, constipation) and total symptom burden. Binary logistic regression was also conducted to assess the association between IWB, EWS, and IBS. Both IWB and EWS were significantly associated with IBS in separate regressions. Results suggest that both EWS and IWB may be linked to experiences of GI symptoms, including IBS. Future research should explore the existence of these relationships, determine the stability of the associations, and identify any causal pathways.

Is the social withdrawal subscale a valid instrument to assess social withdrawal among colorectal cancer survivors with permanent stomas? A validation study

Article

Full-text available

Mar 2025
BMC PSYCHIATRY

Background Although social withdrawal is common among colorectal cancer (CRC) survivors with permanent stomas, it has been poorly addressed due to a lack of valid assessment tools. The social withdrawal subscale (SWS) from the Internalized Stigma of Mental Illness (ISMI) scale shows promise for assessing social withdrawal. However, there was no available data on its validity for this purpose. This study aimed to investigate the reliability and validity of the SWS as a screening tool for identifying survivors at risk of social withdrawal. Methods Two separate convenience samples of 127 and 245 CRC survivors with permanent stomas were selected. Item analysis and exploratory factor analysis (EFA) were conducted with the first sample of 127 survivors. Confirmatory factor analysis (CFA), reliability analysis, and tests for convergent and discriminant validity were performed with the second sample of 245 survivors. Additionally, the screening cut-off score and accuracy of the SWS scores were determined using receiver operating characteristic (ROC) curves. Results The item-total correlation coefficients of the SWS ranged from 0.530 to 0.787. The EFA demonstrated a single-factor structure for the SWS. The CFA confirmed appropriate construct validity (χ²/df = 103.115/52 = 1.983, goodness-of-fit index (GFI) = 0.925, comparative fit index (CFI) = 0.959, and root mean square error of approximation (RMSEA) = 0.068). The test–retest reliability was 0.849. Pearson correlation analysis showed significant and moderate to large relationships between the SWS and the chosen criterion measures, supporting its good convergent validity. ROC analysis identified SWS scores of ≥ 15 as the optimal screening cut-off, with a sensitivity of 86.5%, specificity of 50.5%, and an area under the curve (AUC) of 0.748 (95% CI: 0.673–0.823, P < 0.001). Conclusion The SWS demonstrates acceptable reliability and validity for measuring social withdrawal among CRC survivors with permanent stomas. Future studies should further evaluate its utility in clinical settings.

How Does Disgust Affect Mpox Prevention? Examining the Underlying Mechanisms of Perceived Severity and Perceived Susceptibility Moderated by Stigma

Article

Full-text available

Jun 2024
HEALTH COMMUN

The study aims to examine the influencing mechanism of incidental exposure to Disgusting GraphicsInformation (DGI) about Monkeypox (Mpox) on the intention of prevention behavior. This study first investi-gates the components of disgust and then examines the mechanism of disgust’s influence. The study usesa cross-sectional survey design among respondents who have been incidentally exposed to DGI about Mpox(N = 368). The results showed that disgust toward Mpox is the most effective component among otherproposed ones (disgust toward graphics, information sources, and patients). Disgust not only positivelyinfluences prevention intention, but also indirectly influences prevention intention through perceived severityrather than perceived susceptibility. Moreover, moderated mediation was found, indicating that stigma towardpatients prevents people from adopting preventive behaviors. Both theoretical and practical implications arediscussed.

Patient-Physician Relationship in Irritable Bowel Syndrome: Review on Empathy and Stigma

Article

Full-text available

Feb 2024

Irritable bowel syndrome (IBS) lacks a clear understanding of the disease‘s pathogenesis and effective treatments thus producing frustration among providers and patients, leading to the stigmatization of the disease and the patients with the syndrome. A literature search was performed to make a hermeneutical review on empathic patient-provider communication and IBS. The relationship is defined by partners being dependent on one another in the pursuit of obtaining good outcomes. It is a unique interaction depending not only on the individual qualities of each partner but also on the specific patterns of the patient-physician synergy. Empathy is crucial for any relationship. It helps to recognize the other as the other of myself, a person like me. Meanwhile, stigmatization results from identifying and labelling human differences and stereotyping persons who are linked to undesirable characteristics. IBS is at high risk of stigmatization in various contexts and settings including health care, causing patients and physicians misconceptions and distress, which in turn leads to the worsening of the disease in patients and burnout in physicians. Narrative-based medicine helps create a holistic perspective of a patient’s problems and health, thus providing a tool for an empathic doctor-patient relationship that fosters mutual understanding and helps patients with IBS make sense of symptoms, increases their ability to manage their IBS in a psychologically flexible manner, subsequently helping them maintain their quality of life.

Development of the PROMIS pediatric stigma and extension to the PROMIS pediatric stigma: skin item banks

Article

Full-text available

Jan 2024
QUAL LIFE RES

Purpose To develop the PROMIS Pediatric Stigma (PPS) and Skin (PPS-Skin) by constructing a common metric for measuring stigma in children with various conditions, while capturing the unique features of each condition. Methods Data from 860 children, ages 8–17, with a diagnosis of epilepsy, pNF (neurofibromatosis type 1 associated neurofibroma plexform), MD (muscular dystrophy), cancer, or skin conditions recruited from three projects were analyzed. Children with epilepsy, pNF and MD (sample-1) completed the original 18-item Neuro-QoL Stigma, while children with cancer and skin conditions (e.g., atopic dermatitis, psoriasis, and genetic skin disorders; sample-2) completed a 16-item version and 6 additional skin related items. Exploratory factor analysis (EFA) and confirmatory analysis (CFA) were used to evaluate unidimensionality of 24 stigma items. Differential item functioning (DIF) was used to evaluate measurement equivalence on group, gender, age, and conditions. Item response theory model (IRT) was used to construct the final measure. Results Sufficient unidimensionality was supported by both EFA and CFA. No items showed significant DIF indicating stable measurement properties across groups of comparison. All items fit the IRT model and were able to be calibrated together to form the PPS which consists of 18 core items. The PPS-Skin (18 cores items + 6 skin items) was developed by calibrating 6 skin items onto the common metric as the PPS. Conclusions We used IRT techniques to successfully develop the PPS and the PPS-Skin, which share a common metric and account for unique and common concerns related to chronic conditions.

Social inequalities in aggravating factors of somatic symptom persistence (SOMA.SOC): study protocol for a mixed-method observational study focusing on irritable bowel syndrome and fatigue

Article

Full-text available

Apr 2023

Introduction Some studies indicate that persistent somatic symptoms (PSS) are more prevalent among individuals with a low socioeconomic status (SES) and a migration background. However, factors explaining social inequalities in PSS are largely unknown. It is expected that aggravating factors of PSS like illness perception, illness beliefs (health literacy, stigma), illness behaviour and health anxiety may play an important role for this explanation. The SOMA.SOC study will examine social inequalities (according to SES and migration) in factors contributing to symptom persistence in irritable bowel syndrome (IBS) and fatigue. Methods and analysis The project will collect both quantitative and qualitative data. Quantitative data will be gathered via a representative telephone survey in Germany (N=2400). A vignette design will be used depicting patients varying in sex, condition (IBS/fatigue), occupational status (low/high) and migration (yes/no). In the survey, we will assess public knowledge and beliefs (eg, health literacy), attitudes (stigma) and personal experiences with the condition (eg, somatic symptom burden). Complementary, longitudinal qualitative interviews will be conducted with patients (n=32 at three time points, resulting in N=96 interviews) who will also vary according to sex, condition, occupational status and migration. Patients will be recruited from primary care practices in Hamburg. The interviews will cover origin and development of the condition, coping and help-seeking as well as social interactions and perception of the disease by others (eg, perceived stigma). SOMA.SOC is part of the interdisciplinary SOMACROSS (Persistent SOMAtic Symptoms ACROSS Diseases) research unit. Ethics and dissemination The study protocol was approved by the Ethics Committee of the Hamburg Medical Association on 25 January 2021 (reference number: 2020–10194- BO-ff). Informed consent will be obtained from all participants. The main findings will be submitted for publication in peer-reviewed journals within 12 months of study completion.

Doctors Speak: A Qualitative Study of Physicians’ Prescribing of Antidepressants in Functional Bowel Disorders

Article

Full-text available

Jun 2022
CULT MED PSYCHIAT

Tricyclic antidepressants (TCAs) are frequently prescribed for chronic functional pain disorders. Although the mechanism of action targets pain perception, treating patients with TCAs for disorders conceptualized as “functional” can promote stigmatization in these patients because it hints at psychological dimensions of the disorder. The goal of this study was to understand how physicians prescribe TCAs in the face of this challenge. We interviewed eleven gastroenterologists in tertiary care clinics specializing in functional gastrointestinal disorders, such as irritable bowel syndrome. We found that the physicians interviewed (1) were aware of the stigma attached to taking antidepressants for a medical condition, (2) emphasized biological, as opposed to psychological, mechanisms of action, (3) while focusing on biological mechanisms, they nevertheless prescribed TCAs in a way that is highly attentive to the psychology of expectations, making specific efforts to adjust patients’ expectations to be realistic and to reframe information that would be discouraging and (4) asked patients to persist in taking TCAs despite common and, at times, uncomfortable side effects. In this context of shared decision making, physicians described nuanced understanding and behaviours necessary for treating the complexity of functional disorders and emphasized the importance of a strong patient-provider relationship.

Gastroenterology Trainees’ Attitudes and Knowledge towards Patients with Disorders of Gut‐Brain Interaction

Article

Full-text available

May 2022
NEUROGASTROENT MOTIL

Introduction Disorders of gut‐brain interaction (DGBI) are highly prevalent, estimated to affect about 40% of the global population. Patients with DGBI are still inadequately treated and face stigma which adversely impacts their disease course. Methods A 12‐question multiple‐choice anonymous survey was distributed electronically to all adult gastroenterology fellowship program directors across the United States. Data were collected on demographics, training, attitudes, and knowledge in managing patients with DGBI. Results 9.8% and 15.9% of all trainees reported that their attendings and peers often demonstrated a dismissive attitude towards patients with DGBI, respectively. 21.4% of all trainees often felt frustrated or burned out when seeing patients with DGBI with increasing odds of burnout by years of training (OR 4.4 for F3 trainees, trainees in their third year of training). Significantly, more female trainees reported frustration and burnout when seeing patients with DGBI (p = 0.005). 28.6% of all trainees report they often do not want to see patients with DGBI in their outpatient GI practice, including 39.6% of F3 trainees. 27.1% of F3 trainees reported that they were uncomfortable with titrating neuromodulators and only 31.6% of all trainees were comfortable knowing when to refer to a gastropsychologist. Discussion Many trainees expressed some unwillingness and discomfort in managing patients with DGBI. Potential interventions will require a multi‐pronged and longitudinal approach with education and training initiatives at the trainee level and beyond and exploring systemic healthcare delivery innovations to remove barriers.

Stigma perceived by patients with functional somatic syndromes and its effect on health outcomes – A systematic review

Article

Full-text available

Jan 2022
J PSYCHOSOM RES

Background Patients with functional somatic syndromes (FSS) experience stigma which arguably affects their health. Aim To determine the presence of perceived stigma and its effects on physical and mental health in patients with FSS compared to patients with comparable explained conditions. Methods A comprehensive search of PubMed, Embase, PsycINFO, CINAHL and Cochrane Library was performed to select studies focusing on stigma perceived by patients with irritable bowel syndrome (IBS), fibromyalgia (FM) or chronic fatigue syndrome (CFS), comparing these patients to patients with comparable but explained conditions. Results We identified 1931 studies after duplicate removal. After screening we included eight studies: one study about all three FSS, one about IBS, five about FM and one about CFS. We found that patients with IBS did not consistently experience higher levels of stigma than those with a comparable explained condition. Patients with CFS and FM experienced higher levels of stigma compared to patients with comparable explained conditions. All studies showed a correlation between stigma and negative health outcomes. Discussion Patients with FSS experience stigma and negative health outcomes. However, experiencing stigma is not restricted to patients with FSS, as many patients with explained health conditions also experience stigma. Whether stigma has more negative health consequences in patients with FSS compared to patients with explained health conditions remains unclear and should be assessed in future research.

Utilizing Google Trends to Assess Worldwide Interest in Irritable Bowel Syndrome and Commonly Associated Treatments

Article

Full-text available

Mar 2021
DIGEST DIS SCI

Background Examining the prevalence of irritable bowel syndrome (IBS) across regions has been challenging given significant methodological heterogeneity.AimsWe aimed to perform a uniform assessment of the global burden of IBS using data from Google Trends, a novel, online tool.Methods Google Trends measures popularity of a search term in a given week compared to popularity of all search terms in that week, calculated as relative search volume (RSV). We compiled data on the popularity of IBS and its treatments across 173 countries between 2014 and 2018. We compared Google Trends popularity for IBS with prior epidemiological prevalence data, while controlling for gross domestic product (GDP) per capita and physician density.ResultsOf the 173 countries with Google Trends data, 137 countries also had data for GDP per capita and physician density. Worldwide popularity of IBS as a search topic increased from 79 to 89 (13% increase by RSV) over the 5-year period between 2014 and 2018. Country-specific change in IBS RSV ranged from − 35% (Nigeria) to + 64% (Pakistan). There was poor correlation between the Google Trends data and prior epidemiological data (0.08, Pearson correlation, p = 0.64). Popularity of the low-FODMAP diet increased the most among 8 common therapies (RSV 41 to 89, 117% increase).Conclusions Google Trends is a novel tool that can complement traditional epidemiological methods in gastrointestinal disease. Future research is needed to assess its utility and accuracy as a measure of disease burden across different gastrointestinal diseases.

Social Stigma Towards People with Medically Unexplained Symptoms: the Somatic Symptom Disorder

Article

Full-text available

Jun 2020
PSYCHIAT QUART

Melike Eger Aydogmus

The majority of previous studies on mental health stigma have focused on medically explained symptoms and the studies on medically unexplained symptoms (MUS) have only assessed the consequences of internalized stigma. A new category in DSM 5, named as somatic symptom disorder (SSD), includes multiple somatic disorders with medically-explained or -unexplained somatic symptoms. This study aimed to test the effects of social stigma on people with SSD with MUS depending on the attribution model. In a class environment, 348 college students from different regions in Turkey were presented with a vignette on a person with SSD with MUS and asked to complete a survey including demographics and attitudes towards that person. Along the same lines with previous findings for other mental disorders, the path analysis using AMOS revealed that stigma-related cognitions (i.e., dependency, dangerousness and responsibility) shaped people’s affective (i.e., anger and pity) and behavioral responses (i.e., social distance) to these people. The most important predictor of social distance was pity and the level of contact was not related to social distance. In conclusion, anti-stigma interventions towards SSD with MUS should involve building empathy towards these patients and educating people about this disorder contrary to the recommended interventions for other mental health disorders stressing the importance of contact.

Desperately seeking a cure: Treatment seeking and appraisal in irritable bowel syndrome

Article

Mar 2018

Objectives: Irritable bowel syndrome (IBS) is common and adversely affects patients' quality of life. Multiple potential treatment options exist for patients (and clinicians) to choose from, with limited evidence to inform treatment selection. The aim was to explore how patients with IBS go about seeking and appraising different treatment modalities, with a view to elucidating the psychological processes involved and identifying opportunities to improve clinical practice. Design: Qualitative study nested within a randomized controlled trial of therapist-delivered and web-based cognitive behavioural therapy versus treatment-as-usual for IBS. Methods: A total of 52 people participated in semi-structured interviews about their prior experiences of treatments for IBS. Transcripts were analysed using inductive thematic analysis. Results: Key themes (desperation for a cure, disappointment at lack of cure, appraising the effects of diverse treatments, and hope for positive effects) clustered around an overarching theme of being trapped within a vicious cycle of hope and despair on treatment seeking. A desperation and willingness drove interviewees to try any treatment modality available that might potentially offer relief. Coming to accept there is no cure for IBS helped interviewees escape the vicious cycle. Treatments were appraised for their effects on symptoms and quality of life while also considering, but rarely prioritizing, other aspects including convenience of the regimen itself, whether it addressed the perceived root causes of IBS, perceived side-effects, and cost. Conclusion: Treatment seeking in IBS can be challenging for patients. Supportive discussions with health care professionals about illness perceptions, treatment beliefs, and goals could improve patients' experiences. Statement of contribution What is already known on this subject? Irritable bowel syndrome (IBS) is a highly prevalent chronic relapsing functional gastrointestinal disorder. Studies show few treatment modalities provide complete symptom relief. IBS is associated with emotional and physical distress, and negatively impacts personal, social, and professional aspects of quality of life. What does this study add? Patients appraise IBS treatments for impact on quality of life and treatment characteristics. Developing acceptance and coping strategies helps escape treatment-seeking vicious cycles of hope and despair. Clinicians could better support patients by discussing their illness perceptions, treatment goals, and values.

Perceived Stress, Its Physiological Correlates, and Quality of Life in Patients With Irritable Bowel Syndrome

Article

May 2018
BIOL RES NURS

Irritable bowel syndrome (IBS) is a chronic, common disorder of the gastrointestinal tract associated with high psychological comorbidity and diminished quality of life. Patients with IBS display a heightened sensitivity to stress, although the literature is inconsistent as to whether they have a dysregulated stress response. The purpose of the present investigation, a substudy of a larger research effort, was to examine physiological correlates of perceived stress in patients with IBS (cortisol and adrenocorticotropic hormone) and to explore associations between perceived stress and quality of life. A total of 101 participants (35 with IBS [predominant subtypes IBS-constipation and IBS-diarrhea] and 66 healthy controls [HCs]) completed self-report inventories regarding perceived stress and quality of life, and fasting peripheral blood was drawn. Participants with IBS did not differ from the HC in demographic or physiological measures but did differ in psychological measures, reporting significantly higher levels of perceived stress and lower levels of quality of life. Perceived stress and quality of life were not significantly associated in IBS participants. However, differential findings of the stress response were found within IBS participants by sex, race, and subtype. These findings illustrate the heterogeneity of the IBS patient population, underscore the necessity of evaluating larger sample sizes and increasing the diversity of such samples to include males and ethnic minorities, and demonstrate the importance of taking an individualized approach to evaluation and treatment in the IBS patient population.

Self-Perception of Iranian Patients during their life with Irritable Bowel Syndrome: A Qualitative Study

Article

Full-text available

Dec 2017

Background Irritable bowel syndrome (IBS), as a chronic digestive disorder, impacts extensively on the quality of life, emotional well-being and self-identity. Chronic illness disrupts taken-for-granted notions about self. No qualitative study was found regarding patients’ experience of life with irritable bowel syndrome (IBS) in Iran. Objective To explore the self-perception of lived experience of IBS patients. Methods A qualitative study with hermeneutic phenomenological approach was conducted on 12 IBS patients who had been referred to three central clinics (2 governmental and 1 private) affiliated to Shiraz University of Medical Sciences. The data were collected through in-depth semi-structured interviews from July 2015 to September 2016 by purposeful sampling. Thematic analysis was carried out using Van Manen’s six-step methodological framework as a guide. In addition, MAXQDA software was used for data management. Results In this study, two main themes “the threatened self” and “deep self-knowledge”, emerged during the life of patients with IBS, indicating the meaning of self-perception of such patients. The theme of “the threatened self” consisted of two subthemes of “fear from stigmatization” and “bad sense of self”. The subthemes of “body knowledge”, “self-acceptance” and “personal growth” were related to deep self-knowledge. Conclusion The results of the present study could be applied in designing and implementation effective and holistic care of IBS patients.

Podcasts zur Psychoedukation bei Reizdarmsyndrom: Eine mixed methods-Analyse

Article

Mar 2025
Z GASTROENTEROL

Zusammenfassung Das Reizdarmsyndrom macht einen bedeutenden Anteil gastroenterologischer Konsultationen aus. Psychoedukation bei Reizdarmsyndrom kann zur Verbesserung des klinischen Outcomes sinnvoll sein. Podcasts stellen potenziell ein geeignetes Medium zur Psychoedukation dar. Ziel der vorliegenden Studie war es daher, deutschsprachige Podcasts zum Thema Reizdarmsyndrom hinsichtlich ihrer Eignung zur Patient:innenedukation zu evaluieren und sowohl Podcast-Empfehlungen als auch praxisorientierte Formulierungsbeispiele für Behandelnde zu identifizieren. In einer Stichtagserhebung wurden von Fachkräften produzierte Podcasts zu Erklärungsmodellen des Reizdarmsyndroms identifiziert und einer Mixed-Methods-Analyse unterzogen. Der fachliche Inhalt wurde quantitativ anhand einer leitlinienbasierten Checkliste und die enthaltenen Erklärungsmodelle qualitativ mit Hilfe einer Thematischen Analyse evaluiert. Aus insgesamt 132 identifizierten Podcast-Folgen wurden 53 Folgen (Dauer M = 31 Minuten, SD = 15.5) in die Analyse einbezogen. Im Durchschnitt erreichten die Podcast-Folgen 16 von 60 möglichen Punkten, die am besten bewertete Folge 37 Punkte. Die qualitative Analyse zeigte neben hilfreichen Formulierungsbeispielen stigmatisierende bis missverständliche Äußerungen. In Podcasts finden sich hochwertige Erklärungsmodelle des Reizdarmsyndroms, wobei eine sich thematisch ergänzende Kombination von Behandelnden als eine Ressource zur Erleichterung der Psychoedukation genutzt werden kann.

Störungen der Darm-Hirn-Achse (gut-brain axis)

Chapter

Jan 2025

Sigrid Elsenbruch

Review of the Patient Burden and Therapeutic Landscape of Irritable Bowel Syndrome with Constipation in the United States

Article

Full-text available

Aug 2024

Irritable bowel syndrome (IBS) is a common disorder of the gut–brain axis. IBS with constipation (IBS-C) accounts for approximately one-third of IBS cases and is associated with substantial burden of illness and decreased quality of life. This narrative review provides an overview of the current and upcoming treatment options and disease management for IBS-C from a US perspective and discusses the importance of the relationship between patient and health care provider in diagnosis and treatment. A positive diagnostic strategy for IBS-C is recommended, based on clinical history, physical examination, and minimal laboratory tests. An effective communication strategy between patients and health care professionals is essential to ensure early diagnosis and reduce both health care costs and overall disease burden. Treatment typically begins with lifestyle interventions and nonpharmacologic options, such as dietary interventions, fiber supplements, and osmotic laxatives. In patients with inadequate response to these therapies, 4 currently available therapies (lubiprostone, linaclotide, plecanatide, and tenapanor) approved by the US Food and Drug Administration may relieve IBS-C symptoms. These agents are generally well tolerated and efficacious in improving IBS-C symptoms, including constipation and abdominal pain. In patients with persistent abdominal pain and/or psychological symptoms, brain–gut behavioral therapy or neuromodulator therapy may be beneficial.

The link between anticipated and internalized stigma and depression: A systematic review

Article

Full-text available

Apr 2024
SOC SCI MED

Stigmatized groups may experience psychological distress. Yet, some studies show no significant relation between stigma and mental health outcomes. This systematic review investigates the link between anticipated and internalized stigma, and one mental health outcome, depression. We aimed to (1) determine whether anticipated and internalized stigma predicts levels of depression, and (2) review the quality of evidence for this link. We searched PsycInfo, PubMed and EMBASE databases. Eighty-three studies (N = 34,705) met our inclusion criteria, across five stigma categories: Sexual and gender minorities; HIV/AIDS; Illness or disability-related (non-HIV); Weight, and Other. We reviewed evidence within each category and study design and developed a narrative synthesis. Sixty studies (72.3%) supported the proposed link, which varied across categories from 53.6% to 100%. Using the NIH quality assessment tool, most studies were of fair quality. Most cross-sectional studies (76.7%) straightforwardly supported the positive relation between internalized and/or anticipated stigma and depression, while only 40% of longitudinal studies did. Implications for the study of stigma and mental health outcomes are discussed.

Learning from functional disorders – From a feminist perspective and beyond

Article

Jul 2023
J PSYCHOSOM RES

The Pervasive Impact of the Stigmatization of Gastrointestinal Diseases—A Patient’s Perspective

Article

Dec 2022
GASTROENTEROL CLIN N

Stigma is a centuries-old phenomenon that pervades chronic digestive diseases, regardless of classification. Patients with gastrointestinal (GI) illness perceive others hold stigmatizing beliefs about them and their illness, including from medical professionals, and may go on to internalize or believe these negative stereotypes as true. These perceptions seem to be based on the thought that the public views GI diseases negatively. The effects of GI stigma are substantial and influence quality of life, psychological distress, treatment adherence, disease severity, and health-care utilization. These realities underscore the need for stigma to be addressed by the GI community and measures taken to mitigate its impacts.

Relevance and needs of irritable bowel syndrome (IBS): Comparison with inflammatory bowel disease (IBD). (Please, if you are not interested in IBS, read it.)

Article

Nov 2022

Introduction In our opinion there is an imbalance between the relevance of irritable bowel syndrome (IBS), and the resources that are provided. Objective To review the different factors that determine (or should determine) the interest of gastroenterologists in IBS, comparing it with inflammatory bowel disease (IBD). For this, 7 different areas have been analyzed: 1. Medical impact; 2. Social impact; 3. Academic importance; 4. Clinical relevance; 5. Scientific relevance; 6. Public relevance; and 7. Personal aspects of the doctor. Results The prevalence is 10 times higher in IBS, which represents up to 25% of gastroenterologist visits. Both pathologies alter the quality of life, in many cases in a similar way. The social cost is very important in both cases (e.g.: absenteeism of 21 and 18%) as well as the economic cost, although much higher in medication for IBD. Academic dedication is more than double for IBD, both in university and in MIR training. Scientific relevance is greater in IBD, with a number of publications four times higher. Public relevance is not very different between the two entities, although IBD patients are more associative. Doctors prefer IBD and tend to stigmatize IBS. Conclusion In our opinion, to reduce this imbalance between needs and resources, human and material, in IBS it is essential to make drastic changes both in educational aspects, communication skills, prioritization according to the demands of patients, and reward (personal and social) of physicians.

Importance of temporality and context in relation to life habit restrictions among patients with systemic lupus erythematosus: A psychosocial qualitative study

Article

Full-text available

Aug 2022
LUPUS

Objective Life habits (LH) encompass an individual’s engagement in daily activities such as nutrition, fitness, personal care, communication, housing, and mobility, along with his/her social role (responsibility, interpersonal relationships, community life, education, employment, and recreation). This qualitative study explores the nature and context of LH restrictions in systemic lupus erythematosus (SLE) individuals across their SLE journey. Methods Narrative interviews were conducted with adult SLE patients. Interview transcripts were subjected to a thematic content analysis, using the Disability Creation Process model as a framework. Results Forty participants were interviewed. Three major themes were highlighted: (1) Temporality, capabilities, and environmental contexts: although all participants experienced LH restrictions at some point, the expression of these limitations depended on the individual’s and SLE disease characteristics as well as on temporal (time of life and lupus course) and environmental (material, social, and societal) contexts. (2) Identity issues, illness stigma, and (fear of) discriminations: LH were discussed through the lens of participants’ social roles and identities. While illness stigma can influence social relations, it is also expressed at a societal level. (3) Masking and minimizing strategies: due to illness stigma and fear of discrimination, participants developed strategies to manage their relationships, including masking and minimization. Their use was both advantageous and disadvantageous regarding LH. Conclusions For individuals with SLE, LH restrictions must be considered as an ongoing process that takes place within specific contexts. Our findings provide many opportunities for interventions that can benefit patients and their families, as well as healthcare providers.

The long haul: Lived experiences of survivors following different treatments for advanced colorectal cancer: A qualitative study

Article

Mar 2022
EUR J ONCOL NURS

Purpose Modern treatments, including surgery and palliative chemotherapy without surgery, enable longer survival for people with advanced/recurrent colorectal cancer (CRC). Qualitative research comparing the physical and psychosocial outcomes of these different treatments is lacking. This study therefore aimed to explore and compare the physical and psychosocial challenges and survivorship experiences of people who receive different treatments for advanced CRC, through a qualitative study. Method Adults with CRC who have undergone treatment for advanced/recurrent CRC were recruited 0.5–2 years post-surgery or, for palliative chemotherapy participants, 0.5–2 years post-diagnosis of advanced CRC. Qualitative semi-structured telephone interviews, analysed via framework analysis, explored quality of life (QoL) experiences. Demographic, clinical, and QoL data (Functional Assessment of Cancer Therapy – Colorectal (FACT-C), Distress Thermometer) were collected to characterise the sample and inform the framework analysis. Results A diverse sample of 38 participants (22 female) participated, with ages ranging 27–84 (Median = 59), FACT-C 56–132 (Median = 102), and distress (0–10 (Median = 3). Analysis of interviews revealed three overarching themes: 1) the overwhelming impact of protracted, complex illness; 2) compounding and interacting effects of multiple treatments, impacts, and multimorbidity; and 3) the long haul is unpredictable, bumpy, and wearing. These themes reveal that people with advanced CRC experience many challenges due to the complex nature of the illness, its treatment, and side effects. Conclusions Survivors require continued multi-disciplinary supportive care throughout follow-up to manage survivorship challenges. Guideline-led survivorship care and routine monitoring of physical and psychosocial wellbeing throughout follow up is imperative to manage patient expectations and support advanced CRC survivors.

Relevancia y necesidades del Síndrome del Intestino Irritable (SII): comparación con la Enfermedad Inflamatoria Intestinal (EII).(Por favor, si no te interesa el SII léelo)

Article

Jan 2022

In our opinion there is an imbalance between the relevance of irritable bowel syndrome (IBS), and the resources that are provided. Objective: To review the different factors that determine (or should determine) the interest of gastroenterologists in IBS, comparing it with inflammatory bowel disease (IBD). For this, 7 different areas have been analyzed: 1. Medical impact; 2. Social impact; 3. Academic importance; 4. Clinical relevance; 5. Scientific relevance; 6. Public relevance; and 7. Personal aspects of the doctor. Results: The prevalence is 10 times higher in IBS, which represents up to 25% of gastroenterologist visits. Both pathologies alter the quality of life, in many cases in a similar way. The social cost is very important in both cases (eg: absenteeism of 21 and 18%) as well as the economic cost, although much higher in medication for IBD. Academic dedication is more than double for IBD, both in university and in MIR training. Scientific relevance is greater in IBD, with a number of publications four times higher. Public relevance is not very different between the two entities, although IBD patients are more associative. Doctors prefer IBD and tend to stigmatize IBS. Conclusion: In our opinion, to reduce this imbalance between needs and resources, human and material, in IBS it is essential to make drastic changes both in educational aspects, communication skills, prioritization according to the demands of patients, and reward (personal and social) of physicians.

Deconstructing stigma as a barrier to treating DGBI: Lessons for clinicians

Article

Full-text available

Jan 2021
NEUROGASTROENT MOTIL

Stigma, defined as social devaluation based on negative stereotypes toward a particular population, is prevalent within health care and is a common phenomenon in disorders of gut‐brain interaction (DGBI). Characteristically, DGBI including functional dyspepsia (FD) lack a structural etiology to explain symptoms, have high psychiatric co‐morbidity, and respond to neuromodulators traditionally used to treat psychopathology. As a result, these disorders are frequently and wrongly presumed to be psychiatric and carry a great deal of stigma. Stigma has profound adverse consequences for patients, including emotional distress, medication non‐adherence, barriers to accessing care, and increased symptoms. The basis for stigma dates back to the 17th Century concept of mind‐body dualism. Patients and health care providers need to understand the factors that promote stigma and methods to ameliorate it. In this minireview, we address the data presented in Yan et al.'s (Neurogastroenterol Motil, 2020, e13956). We offer concrete solutions for clinicians to mitigate the impact of stigma to optimize treatment adherence and clinical outcomes for patients with DGBI.

Patient empowerment and working with complex patients with functional gastrointestinal disorders

Chapter

Aug 2017

Gut-Tracking as Cultivation

Conference Paper

Jul 2020

Antidepressants in inflammatory bowel disease

Article

Feb 2020

Gut–brain dysregulation has been recognized by the scientific community as being crucial to the understanding of chronic gastrointestinal conditions, and this has translated into the practice of a newly established discipline, psychogastroenterology. Along with psychotherapy, antidepressants (a subtype of central neuromodulators) have been proposed as treatments for gut–brain disorders that might benefit both psychological and gastrointestinal health. Antidepressants have been found to be effective for the treatment of comorbid anxiety and depression, pain and impaired sleep. Although the efficacy of antidepressants is well established in disorders of gut–brain interaction (DGBI), evidence is only now emerging in IBD. This Perspective discusses the use of antidepressants in DGBI and IBD, focusing on how what we have learnt about the role of antidepressants in DGBI could be applied to help optimize the management of IBD. This Perspective discusses the use of antidepressants in disorders of gut–brain interaction (DGBI) and IBD, focusing on how what we have learnt about the role of antidepressants in DGBI could help optimize the management of IBD.

Stigma and irritable bowel syndrome: a taboo subject?

Article

Jan 2020

This Review highlights the stigma associated with irritable bowel syndrome and its impact on patient care and clinical outcomes. Stigma around irritable bowel syndrome is prevalent among the general public, health-care professionals, and co-workers, and is often related to poor understanding of the condition. Furthermore, stigma is associated with unsatisfactory outcomes for people with irritable bowel syndrome, including increased health-care use, psychological distress, and impaired quality of life. Comparative studies suggest that stigma is much higher for irritable bowel syndrome than it is for inflammatory bowel disease, a so-called organic gastrointestinal disorder with overlapping symptomatology. In this Review, we discuss the lack of interest in irritable bowel syndrome among members of the general public and health-care professionals, and the need for it to be better understood. These problems should be addressed by appropriate educational strategies to raise awareness and by relevant interventions.

Self‐stigma Among Korean Patients with Diabetes: A Concept Analysis

Article

Jan 2019

Aims and Objectives The goal of the present study was to conduct a concept analysis of self‐stigma among patients with diabetes and introduce an operational definition of self‐stigma. Background Due to fears of being monitored, patients with diabetes often conceal their disease and/or withdraw from social relationships. These behaviors negatively affect patients’ self‐care and socialization. Design A concept analysis was conducted using a three‐phase (theoretical phase, field work phase, final analysis phase) hybrid method by Schwartz‐Barcott and Kim (1986). Methods During the theoretical phase, a literature search was conducted using PubMed and CINAHL. Using COREQ guidelines, in the field work phase, in‐depth interviews were conducted with nine participants with diabetes. The recorded data were analyzed using a grounded theory approach. Results from both were included in the analytic phase. Results In the field work phase, nine patients with diabetes (four men and five women; mean age = 57.00 ± 21.93 years) participated in the interview. The mean duration of diabetes was 21.44 ± 12.39 years. The self‐stigma concept included three categories with nine attributes: affective (negative feelings and feeling sorry for others who have concerns about me), cognitive (low self‐esteem and self‐efficacy, perceived weakness, low expectations for the future, worry for children, and disease burden), and behavioral factors (social withdrawal and avoiding disease disclosure). The nine attributes included 23 indicators. Conclusions Self‐stigma among patients with diabetes is defined as a state in which patients develop negative self‐feelings as they deal with the disease. This can cause diminished self‐esteem and self‐efficacy, as well as a tendency to avoid disclosing the illness along with social withdrawal. Relevance to Clinical Practice Based on this self‐stigma concept analysis, we clarified the attributes of diabetes self‐stigma and distinguish it from social stigma in nurse professionals during patient education and clinical assessment. This article is protected by copyright. All rights reserved.

Self-stigmatization in patients with bipolar disorder

Article

Full-text available

Aug 2013
NEUROENDOCRINOL LETT

Background: Prejudicial beliefs, emotions, and behaviours cause discrimination against people labeled as mentally ill. This stigmatization is sometimes internalized by the patients, leading to self-stigmatization. Specific features and impacts of stigmatization and self-stigmatization in patients with bipolar illness are the subjects of this review. Method: Studies were identified through PUBMED, Web of Science and Scopus databases as well as existing reviews. The search terms included "bipolar disorder", "stigma", "self-stigma" psychoeducation", "psychotherapy", "psychosocial treatment". Key articles listed in reference lists were searched. Results: Considerable recent evidence indicates that bipolar patients and their families are stigmatized, and that this stigmatization affects their quality of life as well as social functioning. The severity of stigmatization in bipolar disorder is greater than that in people with depression. There is also evidence of self-stigmatization which further decreases the quality of life. Stigmatization and self-stigmatization were shown to be one of the barriers that delay or prevent effective treatment, and thus exert adverse effects on the outcomes of bipolar disorder. Conclusion: Stigma affects the experience of illness as well as social functioning in patients with bipolar disorder. The impact of stigma on the lives and treatment outcomes of patients with bipolar disorder mandates intensive effort of mental health research and policy to address this problem. Much has been done against the stigmatization of the mentally ill. But the fight against stigma remains a fundamental objective of health programs for mental health.

Complementary and Alternative Medicine and Mind–Body Therapies for Treatment of Irritable Bowel Syndrome in Women

Article

Full-text available

Nov 2013

Irritable bowel syndrome (IBS) is a common gastrointestinal disorder, characterized by chronic or recurrent abdominal pain with constipation, diarrhea and/or an alternation of the two, and often bloating. Complementary and alternative medicine (CAM) consists of a group of medical treatments that are not commonly considered to be a part of traditional medicine. CAM is commonly used for difficult-to-treat chronic medical conditions. Many patients choose CAM because there are only a limited number of treatments available for IBS or because they would like to have a 'natural therapy'. Mind-body therapies for IBS have proven efficacy, but have not been well accepted by patients or practitioners for treatment. This article reviews the use of CAM and mind-body therapies in IBS, with a focus on probiotics, acupuncture, herbal medicines and psychological therapies.

Self-stigma, quality of life and schizophrenia: An outpatient clinic survey in Nigeria

Article

Full-text available

Jun 2014
INT J SOC PSYCHIATR

Background Stigma is a major obstacle to the treatment and recovery of people with mental illness. In Nigeria, there is a dearth of information on internalization of stigma and its effect on treatment outcome measures such as quality of life. Aim and objectives The aim of the study was to assess self-stigma among patients with schizophrenia attending a psychiatric hospital outpatient clinic, and the relationship of self-stigma to the socio-demographic, clinical characteristics and quality of life of the patients. Method Two hundred and fifty-six consecutive outpatient attendees of the Neuropsychiatric Hospital, Aro, Abeokuta in Nigeria with a Diagnostic and Statistical Manual of Mental Disorders, fourth edition (DSM-IV) diagnosis of schizophrenia were recruited for the study. The diagnosis of schizophrenia was established with the Structured Clinical Interview Schedule for DSM-IV Axis I disorder (SCID), while item 17 of the Present State Examination was used to ascertain the presence of insight into the illness. The subjects were interviewed with a socio-demographic questionnaire, the Internalized Stigma of Mental Illness (ISMI) scale, the Brief Psychiatric Rating Scale (BPRS) and the World Health Organization’s Quality of Life (WHOQOL-Bref) questionnaire. Results The mean age of the subjects was 39.5 (SD = 10.6) years with males constituting 52.0% of the sample. High self-stigma was found in 18.8% of the subjects. The socio-demographic and clinical correlates of high self-stigma found using univariate analysis were low educational level (χ² = 22.69, p < .001), unemployment (χ² = 15.9, p < .001), low income (χ² = 25.03, p < .001), source of income (χ² = 12.52, p = .007) and severity of psychopathology (t = 8.245, p < .001). High self-stigma was associated with poor quality of life in all the domains of WHOQOL-Bref. Conclusion This study revealed that self-stigma was common among subjects with schizophrenia. It is associated with poor treatment outcome, highlighting the need to incorporate stigma intervention strategies into mental health care delivery.

Experienced stigmatization reduced quality of life of patients with a neuromuscular disease: a cross-sectional study

Article

Full-text available

Jul 2013

Objective To examine the influence of stigma on the quality of life of patients with a neuromuscular disease. Design Cross-sectional postal survey. Setting Outpatient clinic of the Department of Neurology, University Hospital Groningen, the Netherlands. Subjects Patients diagnosed with a neuromuscular disease. Measures The Stigma Scale for Chronic Illness, the World Health Organization Quality of Life – abbreviated version questionnaires and some background and disease-related questions. The Stigma Scale for Chronic Illness was translated into Dutch according to international guidelines. The impact of stigma on quality of life was estimated using hierarchical multiple regression analysis after controlling for the extent of limitations and patient characteristics. Results In total 235 patients (75% response rate) were diagnosed with neuromuscular disease and represented all four categories of the approximately 600 neuromuscular diseases. Most patients (86%) reported self stigma, while 64% reported to experience enacted stigma. Experienced quality of life was moderate to good. Stigma contributed to a unique and substantial extent to all domains of quality of life: explained variance for the impact of stigma on quality ranged from 0.13 (social relations) to 0.34 (physical functioning) for self stigma and from 0.09 (social relations) to 0.11 (physical and psychological health, and quality of the environment). Conclusion Self stigma was a stronger predictor for poorer quality of life compared with enacted stigma. In other words: patients suffered more from shame and fear for discrimination (self stigma) than from the really experienced discrimination and exclusion (enacted stigma).

Mobile Health Applications for the Most Prevalent Conditions by the World Health Organization: Review and Analysis

Article

Full-text available

Jun 2013
J MED INTERNET RES

New possibilities for mHealth have arisen by means of the latest advances in mobile communications and technologies. With more than 1 billion smartphones and 100 million tablets around the world, these devices can be a valuable tool in health care management. Every aid for health care is welcome and necessary as shown by the more than 50 million estimated deaths caused by illnesses or health conditions in 2008. Some of these conditions have additional importance depending on their prevalence. To study the existing applications for mobile devices exclusively dedicated to the eight most prevalent health conditions by the latest update (2004) of the Global Burden of Disease (GBD) of the World Health Organization (WHO): iron-deficiency anemia, hearing loss, migraine, low vision, asthma, diabetes mellitus, osteoarthritis (OA), and unipolar depressive disorders. Two reviews have been carried out. The first one is a review of mobile applications in published articles retrieved from the following systems: IEEE Xplore, Scopus, ScienceDirect, Web of Knowledge, and PubMed. The second review is carried out by searching the most important commercial app stores: Google play, iTunes, BlackBerry World, Windows Phone Apps+Games, and Nokia's Ovi store. Finally, two applications for each condition, one for each review, were selected for an in-depth analysis. Search queries up to April 2013 located 247 papers and more than 3673 apps related to the most prevalent conditions. The conditions in descending order by the number of applications found in literature are diabetes, asthma, depression, hearing loss, low vision, OA, anemia, and migraine. However when ordered by the number of commercial apps found, the list is diabetes, depression, migraine, asthma, low vision, hearing loss, OA, and anemia. Excluding OA from the former list, the four most prevalent conditions have fewer apps and research than the final four. Several results are extracted from the in-depth analysis: most of the apps are designed for monitoring, assisting, or informing about the condition. Typically an Internet connection is not required, and most of the apps are aimed for the general public and for nonclinical use. The preferred type of data visualization is text followed by charts and pictures. Assistive and monitoring apps are shown to be frequently used, whereas informative and educational apps are only occasionally used. Distribution of work on mobile applications is not equal for the eight most prevalent conditions. Whereas some conditions such as diabetes and depression have an overwhelming number of apps and research, there is a lack of apps related to other conditions, such as anemia, hearing loss, or low vision, which must be filled. Available online: http://www.jmir.org/2013/6/e120/

Negative Aspects of Close Relationships are More Strongly Associated than Supportive Personal Relationships with Illness Burden of Irritable Bowel Syndrome

Article

Full-text available

Jun 2013

This study assessed the relative magnitude of associations between IBS outcomes and different aspects of social relationships (social support, negative interactions). Subjects included 235 Rome III diagnosed IBS patients (M age=41yrs, F=78%) without comorbid GI disease. Subjects completed a testing battery that included the Interpersonal Support Evaluation List (Social Support or SS), Negative Interaction (NI) Scale, IBS Symptom Severity Scale (IBS-SSS), IBS-QOL, BSI Depression, STAI Trait Anxiety, SOMS-7 (somatization), Perceived Stress Scale, and a medical comorbidity checklist. After controlling for demographic variables, both SS and NI were significantly correlated with all of the clinical variables (SS r's=.20 to .36; NI r's=.17 to .53, respectively; ps<.05) save for IBS symptom severity (IBS-SSS). NI, but not SS, was positively correlated with IBS-SSS. After performing r-to-z transformations on the correlation coefficients and then comparing z-scores, the correlation between perceived stress, and NI was significantly stronger than with SS. There was no significant difference between the strength of correlations between NI and SS for depression, somatization, trait anxiety, and IBSQOL. A hierarchical linear regression identified both SS and NI as significant predictors of IBS-QOL. Different aspects of social relationships - support and negative interactions - are associated with multiple aspects of IBS experience (e.g. stress, QOL impairment). Negative social relationships marked by conflict and adverse exchanges are more consistently and strongly related to IBS outcomes than social support.

36 Which Psychological Factors Exacerbate Irritable Bowel Syndrome? Test of a Comprehensive Model

Article

Full-text available

Jun 2013

There is evidence that psychological factors affect the onset, severity and duration of irritable bowel syndrome (IBS). However, it is not clear which psychological factors are the most important and how they interact. The aims of the current study are to identify the most important psychological factors predicting IBS symptom severity and to investigate how these psychological variables are related to each other. Study participants were 286 IBS patients who completed a battery of psychological questionnaires including neuroticism, abuse history, life events, anxiety, somatization and catastrophizing. IBS severity measured by the IBS Severity Scale was the dependent variable. Path analysis was performed to determine the associations among the psychological variables, and IBS severity. Although the hypothesized model showed adequate fit, post hoc model modifications were performed to increase prediction. The final model was significant (Chi(2)=2.2; p=0.82; RMSEA<.05) predicting 36% of variance in IBS severity. Catastrophizing (standardized coefficient (β)=0.33; p<.001) and somatization (β=0.20; p<.001) were the only two psychological variables directly associated with IBS severity. Anxiety had an indirect effect on IBS symptoms through catastrophizing (β=0.80; p<.001); as well as somatization (β=0.37; p<.001). Anxiety, in turn, was predicted by neuroticism (β=0.66; p<.001) and stressful life events (β=0.31; p<.001). While cause-and-effect cannot be determined from these cross-sectional data, the outcomes suggest that the most fruitful approach to curb negative effects of psychological factors on IBS is to reduce catastrophizing and somatization.

A Model of Internalized Stigma and Its Effects on People With Mental Illness

Article

Full-text available

Mar 2013
PSYCHIAT SERV

The investigators aimed to examine the prevalence of internalized stigma among individuals with serious mental illness and to construct and test a hypothesized model of the interrelationships among internalized stigma, self-concept, and psychiatric symptoms. One hundred individuals, most of whom were African American and had a diagnosis of serious mental illness, were receiving mental health services from one of three community outpatient mental health programs or one Veterans Affairsmedical center. They completed an interview that included measures of internalized stigma, psychiatric symptoms, self-esteem, selfefficacy, and recovery orientation. Structural equation modeling (SEM) was used to examine the interrelationships among these variables. Thirty-five percent of participants reported moderate to severe levels of internalized stigma, which was not significantly associated with any demographic variable or diagnosis. However, greater internalized stigma was associated with lower levels of self-esteem, self-efficacy, and recovery orientation, as well as with more severe psychiatric symptoms. The SEM produced a nonsignificant chi square statistic and other fit indices indicative of a good model fit (goodness-of-fit index=.96, root mean square error of approximation=.011). Results suggest that internalized stigma was prevalent and problematic among individuals with serious mental illness. There may be multiple pathways through which stigma and discrimination lead to negative outcomes, suggesting that interventions to reduce internalized stigma need to target multiple points along these pathways in order to be effective.

A Preliminary Evaluation of Internalized Stigma and Stigma Resistance in Inflammatory Bowel Disease.

Article

Full-text available

Jun 2012

Illness stigmatization among inflammatory bowel diseases (IBDs) is poorly understood. We aim to characterize internalized stigma and stigma resistance in IBD patients, and evaluate their relationships to outcomes. A total of 191 IBD patients reported internalized stigma, resistance, demographic and clinical information, and several outcomes: health-related quality of life (HRQOL), psychological distress, self-esteem, and self-efficacy. Overall 36% experienced internalized stigma and 88% moderate to high stigma resistance behaviors. Internalized stigma strongly related to poorer outcomes while resistance demonstrated a weaker, opposite effect. Internalized stigma and stigma resistance are important considerations for IBD outcomes. Interventions to reduce internalized stigma and leverage resistance are warranted.

Meditation over Medication for Irritable Bowel Syndrome? On Exercise and Alternative Treatments for Irritable Bowel Syndrome

Article

Full-text available

Jun 2012
Curr Gastroenterol Rep

Complimentary alternative treatment regimens are widely used in irritable bowel syndrome (IBS), but the evidence supporting their use varies. For psychological treatment options, such as cognitive behavioral therapy, mindfulness, gut-directed hypnotherapy, and psychodynamic therapy, the evidence supporting their use in IBS patients is strong, but the availability limits their use in clinical practice. Dietary interventions are commonly included in the management of IBS patients, but these are primarily based on studies assessing physiological function in relation to dietary components, and to a lesser degree upon research examining the role of dietary components in the therapeutic management of IBS. Several probiotic products improve a range of symptoms in IBS patients. Physical activity is of benefit for health in general and recent data implicates its usefulness also for IBS patients. Acupuncture does not seem to have an effect beyond placebo in IBS. A beneficial effect of some herbal treatments has been reported.

A Content Analysis of Chronic Diseases Social Groups on Facebook and Twitter

Article

Full-text available

May 2012
TELEMED J E-HEALTH

Research on the use of social networks for health-related purposes is limited. This study aims to characterize the purpose and use of Facebook and Twitter groups concerning colorectal cancer, breast cancer, and diabetes. We searched in Facebook ( www.facebook.com ) and Twitter ( www.twitter.com ) using the terms "colorectal cancer," "breast cancer," and "diabetes." Each important group has been analyzed by extracting its network name, number of members, interests, and Web site URL. We found 216 breast cancer groups, 171 colorectal cancer groups, and 527 diabetes groups on Facebook and Twitter. The largest percentage of the colorectal cancer groups (25.58%) addresses prevention, similarly to breast cancer, whereas diabetes groups are mainly focused on research issues (25.09%). There are more social groups about breast cancer and diabetes on Facebook (around 82%) than on Twitter (around 18%). Regarding colorectal cancer, the difference is less: Facebook had 62.23%, and Twitter 31.76%. Social networks are a useful tool for supporting patients suffering from these three diseases. Regarding the use of these social networks for disease support purposes, Facebook shows a higher usage rate than Twitter, perhaps because Twitter is newer than Facebook, and its use is not so generalized.

Satisfaction with patient-doctor relationships in inflammatory bowel diseases: Examining patient-initiated change of specialist

Article

Full-text available

May 2012
WORLD J GASTROENTERO

To assess the reasons for, and factors associated with, patient-initiated changes in treating specialist in inflammatory bowel diseases (IBD). Prospectively identified IBD patients (n = 256) with ≥ 1 encounter at a metropolitan hospital were surveyed, including whether they had changed treating specialist and why. Negative reasons included loss of confidence, disagreement, and/or personality clash with the specialist. Of 162 respondents, 70 (43%) had ever changed specialists; 30/70 (43%) for negative reasons, 52/70 (74%) in the preceding year. Patients with negative reasons for changing (n = 30) were younger (median, 35.2 years vs 45.3 years), had higher IBD knowledge (median, 5.0 years vs 4.0 years), yet had lower medication adherence and satisfaction scores (median, 19.0 years vs 22.0 years, 14.0 years vs 16.0 years respectively, Mann-Whitney tests, all P < 0.05), compared to all other responders (n = 132). Patients with a recent change (for any reason) were more likely to have Crohn's disease, currently active disease, previous bowel resection and recent hospitalization [OR 2.6, 95% CI (1.3-5.4), 2.2 (1.0-4.7), 5.56 (1.92-16.67), 2.0 (1.3-3.0), each P < 0.05]. Changing specialist appears associated with patient- related (age, nonadherence) and contemporaneous disease-related factors (recent relapse) which, where modifiable, may enhance patient-doctor relationships and therefore quality of care.

The Impact of Stigma in Healthcare on People Living with Chronic Illnesses

Article

Full-text available

Jul 2011

Approximately half of adults are living with a chronic illness, many of whom may feel stigmatized by their chronic illness in different contexts. We explored the impact of internalized, experienced, and anticipated stigma within healthcare settings on the quality of life of 184 participants living with chronic illnesses (e.g. diabetes, inflammatory bowel disease, asthma). Results of a path analysis demonstrate that participants who internalized stigma and experienced stigma from healthcare workers anticipated greater stigma from healthcare workers. Participants who anticipated greater stigma from healthcare workers, in turn, accessed healthcare less and experienced a decreased quality of life.

Item Banks for Measuring Emotional Distress From the Patient-Reported Outcomes Measurement Information System (PROMIS®): Depression, Anxiety, and Anger

Article

Full-text available

Sep 2011
ASSESSMENT

The authors report on the development and calibration of item banks for depression, anxiety, and anger as part of the Patient-Reported Outcomes Measurement Information System (PROMIS®). Comprehensive literature searches yielded an initial bank of 1,404 items from 305 instruments. After qualitative item analysis (including focus groups and cognitive interviewing), 168 items (56 for each construct) were written in a first person, past tense format with a 7-day time frame and five response options reflecting frequency. The calibration sample included nearly 15,000 respondents. Final banks of 28, 29, and 29 items were calibrated for depression, anxiety, and anger, respectively, using item response theory. Test information curves showed that the PROMIS item banks provided more information than conventional measures in a range of severity from approximately −1 to +3 standard deviations (with higher scores indicating greater distress). Short forms consisting of seven to eight items provided information comparable to legacy measures containing more items.

Irritable Bowel Syndrome Patients’ Ideal Expectations and Recent Experiences with Healthcare Providers: A National Survey

Article

Full-text available

Jul 2009
DIGEST DIS SCI

Unlabelled: The purpose of this paper is to identify patients' ideal expectations from their healthcare providers. The IBS-Patient Education Questionnaire was developed using focus groups, and was administered to a national sample of IBS patients. Frequencies of item endorsements were obtained. Subgroup analysis was done comparing the responses for patients' ideal expectations of their healthcare providers vs. their experiences with their last provider. Among the 1,242 patients who completed the survey, the mean age was 39.3 years, educational attainment 15 years, 85% female, IBS duration 6.9 years, 1,028 (83%) had seen a physician for IBS in the past, and 92.6% have used the Internet to obtain health information. Among the subjects who have seen a physician for IBS, the most desired qualities of providers were to give comprehensive information (96%), to refer to a source for additional information (95.8%), to answer questions (95.9%), to listen (94.4%), to provide information about IBS studies and medications (94%), and to provide support (88.6%) and hope (82.1%). Importantly, patients' prior experiences with their last healthcare provider differed from their ideal expectations: "provide information" (38.3%); answer questions during the visit (68%), "to listen" (63.8%), and support (47.1%). Patients' ideal expectations from healthcare providers (what patients ideally would like to experience) relate to obtaining information and relationship needs of receiving support and hope. Notably, their prior experiences with recent healthcare providers (what patients perceived actually occurred) were different from their ideal expectations. A better understanding of different types of expectations is necessary in order to construct an effective therapeutic relationship, which is critical for the management of IBS. Practice implications: Practice guidelines for IBS should emphasize a better understanding of a patient's expectations and the therapeutic value of patient-provider communication.

A Focus Group Assessment of Patient Perspectives on Irritable Bowel Syndrome and Illness Severity

Article

Full-text available

May 2009
DIGEST DIS SCI

There is a growing need to understand from the patient's perspective the experience of irritable bowel syndrome (IBS) and the factors contributing to its severity; this has been endorsed by the Food and Drug Administration (FDA). Accordingly, we conducted focus groups to address this issue. A total of 32 patients with mostly moderate to severe IBS were recruited through advertising and were allocated into three focus groups based on predominant stool pattern. The focus groups were held using standard methodology to obtain a general assessment of the symptoms experienced with IBS, its impact, and of factors associated with self-perceived severity. Patients described IBS not only as symptoms (predominantly abdominal pain) but mainly as it affects daily function, thoughts, feelings and behaviors. Common responses included uncertainty and unpredictability with loss of freedom, spontaneity and social contacts, as well as feelings of fearfulness, shame, and embarrassment. This could lead to behavioral responses including avoidance of activities and many adaptations in routine in an effort for patients to gain control. A predominant theme was a sense of stigma experienced because of a lack of understanding by family, friends and physicians of the effects of IBS on the individual, or the legitimacy of the individual's emotions and adaptation behaviors experienced. This was a barrier to normal functioning that could be ameliorated through identifying with others who could understand this situation. Severity was linked to health-related quality of life (HRQOL) and was influenced by the intensity of abdominal pain and other symptoms, interference with and restrictions relating to eating, work, and social activities, and of the unpredictability of the condition. This study confirms the heterogeneous and multi-component nature of IBS. These qualitative data can be used in developing health status and severity instruments for larger-scale studies.

Functional somatic symptoms: A cross-ethnic comparison

Article

Full-text available

Oct 1992

Examined functional somatic symptoms reported by ethnic groups in Los Angeles (LA) and Puerto Rico (PR) and explored whether sociodemographic factors influence the number, type, and correlates of medically unexplained symptoms. The LA sample consisted of 493 US born Mexican-Americans, 619 Ss born in Mexico, and 973 non-Hispanic Whites. The PR sample included 1,551 Ss. In both LA and PR, the Diagnostic Interview Schedule was used to ascertain somatic symptoms. The mean number of functional somatic symptoms was greater among Puerto Rican Ss than among Mexican Americans born in the US or Mexico, or among non-Hispanic Whites. In all groups, women had higher levels of somatic symptoms than did males. Results support A. Kleinman and B. Good's (1985) assertion that, while major psychological syndromes are universal phenomena, their expression is determined by cultural factors.

The development and validation of the Perceived Health Competence Scale

Article

Full-text available

Apr 1995

A sense of competence or self-efficacy is associated with many positive outcomes, particularly in the area of health behavior. A measure of a sense of competence in the domain of health behavior has not been developed. Most measures are either general measures of a general sense of self-efficacy or are very specific to a particular health behavior. The Perceived Health Competence Scale (PHCS), a domain-specific measure of the degree to which an individual feels capable of effectively managing his or her health outcomes, was developed to provide a measure of perceived competence at an intermediate level of specificity. Five studies using three different types of samples (students, adults and persons with a chronic illness) provide evidence for the reliability and validity of the PHCS. The eight items of the PHCS combine both outcome and behavioral expectancies. Results from the five studies indicate that the scale has good internal consistency and test–retest reliability. The construct validity of the scale is demonstrated through the support obtained for substantive hypotheses regarding the correlates of perceived health competence, such as health behavior intentions, general sense of competence and health locus of control.

Internalized societal attitudes moderate the impact of weight stigma on avoidance of exercise

Article

Jan 2010

Functional somatic syndromes

Article

Jun 1999

The term functional somatic syndrome has been applied to several related syndromes characterized more by symptoms, suffering, and disability than by consistently demonstrable tissue abnormality. These syndromes include multiple chemical sensitivity, the sick building syndrome, repetition stress injury, the side effects of silicone breast implants, the Gulf War syndrome, chronic whiplash, the chronic fatigue syndrome, the irritable bowel syndrome, and fibromyalgia. Patients with functional somatic syndromes have explicit and highly elaborated self-diagnoses, and their symptoms are often refractory to reassurance, explanation, and standard treatment of symptoms. They share similar phenomenologies, high rates of co-occurrence, similar epidemiologic characteristics, and higher-than-expected prevalences of psychiatric comorbidity. Although discrete pathophysiologic causes may ultimately be found in some patients with functional somatic syndromes, the suffering of these patients is exacerbated by a self-perpetuating, self-validating cycle in which common, endemic, somatic symptoms are incorrectly attributed to serious abnormality, reinforcing the patient's belief that he or she has a serious disease. Four psychosocial factors propel this cycle of symptom amplification: the belief that one has a serious disease; the expectation that one's condition is likely to worsen; the "sick role," including the effects of litigation and compensation; and the alarming portrayal of the condition as catastrophic and disabling. The climate surrounding functional somatic syndromes includes sensationalized media coverage, profound suspicion of medical expertise and physicians, the mobilization of parties with a vested self-interest in the status of functional somatic syndromes, litigation, and a clinical approach that overemphasizes the biomedical and ignores psychosocial factors. All of these influences exacerbate and perpetuate the somatic distress of patients with functional somatic syndromes, heighten their fears and pessimistic expectations, prolong their disability, and reinforce their sick role. A six-step strategy for helping patients with functional somatic syndromes is presented here.

Perceived stigma in patients with functional somatic syndromes and comparable medical conditions

Article

Mar 2001
PSYCHOSOMATICS

Objective: To determine if patients with functional somatic syndromes (FSS) perceive greater levels of stigma than patients with comparable medical conditions that have a clear medical pathology. Methods: Patients with chronic fatigue syndrome (CFS), fibromyalgia (FM), or irritable bowel syndrome (IBS) were compared to multiple sclerosis (MS), rheumatoid arthritis (RA), and inflammatory bowel disease (IBS), respectively. Results: There were greater levels of perceived stigma in the combined group of FSS compared to the medical control group. When each FSS was compared to its matched control group, only CFS had a higher level of perceived stigma. These results remained when controlling for other variables relevant to stigma. Conclusions: The higher level of perceived stigma in CFS may be due to the ambiguity of its status as a medical condition. The absence of this effect in FM and IBS is consistent with a greater level of acceptance of these disorders as medical illnesses.

Social Stigma: The Psychology of Marked Relationships

Article

May 1985

Internalization of stigma and self-esteem as it affects the capacity for intimacy among patients with schizophrenia

Article

Oct 2013

The study examines the relationship between internalization of stigma, self-esteem, and the ability of people diagnosed with schizophrenia to form intimate attachments with loved ones. The study included sixty patients with schizophrenia, ages 18-60, men and women. After providing informed consent, all participants completed four questionnaires: Demographics Questionnaire, Self-Esteem Scale, Internalized Stigma of Mental Illness Scale and the Intimacy Attitude Scale-Revised. Internalization of social stigma was found to be a statistically significant core factor that affects self-esteem and the ability to create intimacy among patients with schizophrenia. There was statistically significantly less internalization of stigma of mental illness among hospitalized patients than among individuals with schizophrenia who live in the community.

Internalized Stigma of Mental Illness (ISMI) Scale: A multinational review

Article

Sep 2013

Weight Bias Internalization, Depression, and Self-Reported Health Among Overweight Binge Eating Disorder Patients

Article

May 2014
OBESITY

Objective This study aimed to examine the relationship between internalization of weight bias, which has been linked to specific negative mental health outcomes, and overall mental and physical health among overweight patients with binge eating disorder (BED). The role of depressive symptoms as a potential mediator in this relationship was also tested. Design and Methods In a cross-sectional study, 255 individuals who were overweight and seeking treatment for BED completed the Weight Bias Internalization Scale (WBIS), Short-Form 36 Health Survey (SF-36), and Beck Depression Inventory II (BDI). Regression analyses were conducted to evaluate the relationship between the WBIS and the SF-36, and bootstrapping mediation analyses were conducted to test whether BDI scores mediated this relationship. Results Higher weight bias internalization was associated with poorer self-reported health on all scales of the SF-36, and BDI scores mediated the relationship. Additional analyses revealed that WBIS scores also mediated the relationship between BDI scores and three SF-36 scales. Conclusions Weight bias internalization is associated with poorer overall mental and physical health, and depressive symptoms may play a role in accounting for this relationship in treatment-seeking overweight patients with BED.

Weight bias internalization, core self-evaluation, and health in overweight and obese persons

Article

Jan 2014
OBESITY

Objective: Weight bias has strong associations with psychopathology in overweight and obese individuals. However, self-evaluative processes, as conceptualized in the process model of self-stigma, and implications for other health-related outcomes, remain to be clarified. Design and methods: In a representative general population sample of N = 1158 overweight and obese individuals, the impact of core self-evaluation as a mediator between weight bias internalization and mental and global health outcomes as well as between weight bias internalization and health care utilization, was examined using structural equation modeling. Results: In overweight and obese individuals, greater weight bias internalization predicted lower core self-evaluation, which in turn predicted greater depression and anxiety, lower global health, and greater health care utilization. These mediational associations were largely stable in subsample analyses and after controlling for sociodemographic variables. Conclusions: The results show that overweight and obese individuals with internalized weight bias are at risk for impaired health, especially if they experience low core self-evaluation, making them a group with which to target for interventions to reduce self-stigma. Weight bias internalization did not represent a barrier to health care utilization, but predicted greater health care utilization in association with greater health impairments.

Multicultural considerations in the diagnosis and management of irritable bowel syndrome: A selective summary

Article

Jun 2013

Irritable bowel syndrome (IBS) is a common gastrointestinal disorder that is characterized by chronic and recurrent abdominal symptoms with no associated organic abnormalities. Although IBS has traditionally been considered to be more common in western cultures, a review of the literature reveals that IBS is truly a worldwide illness, affecting people in many different cultural and geographic areas. According to this review, a reasonable range for the worldwide prevalence of IBS is between 5 and 15%. Several theories for varying prevalence rates around the world are presented in this paper and methodological difficulties are discussed. Finally, this short review provides an analysis of cultural, biological, and socioeconomic differences in IBS presentation and treatment around the world.

Social media in primary health care: Opportunities to enhance education, communication and collaboration among professionals in rural and remote locations: Did you know? Practical practice pointers Social media in primary health care: Opportunities to enhance education, communication and collaboration among professionals in rural and remote locations: Did you know? Practical practice pointers

Article

Apr 2013

Social media is becoming increasingly popular in health care. Technologies that are relevant to primary health care include social networking websites, blogs, microblogging websites and Wikis.

Internalized stigma and quality of life among persons with severe mental illness: The mediating roles of self-esteem and hope

Article

Apr 2013

Cancer Care in East and Central Harlem: Community Partnership Needs Assessment

Article

Oct 2012
J CANCER EDUC

In the largely African American and Hispanic communities of East and Central Harlem in New York City (NYC), health inequities are glaring. Mortality from cancer is 20-30 % higher than in Manhattan and 30-40 % higher than rates in the general population in NYC. Despite advances in risk assessment, early detection, treatment, and survivorship, individuals in Harlem and similar urban communities are not benefiting equally. Guided by community-based participatory research, this study serves as an important step in understanding cancer care needs and the range of factors that impact the disparate rates of cancer in East and Central Harlem. Forty individual interviews were conducted with community leaders and residents. Major themes included: need for appropriate supportive services; health care access and financial challenges; beliefs related to stigma, trust, and accountability; and the impact of the physical environment on health. Education was seen as a critical area of need and intervention.

Correlates of perceived and internalized stigma among abortion patients in the USA: An exploration by race and Hispanic ethnicity

Article

Sep 2012
INT J GYNECOL OBSTET

This study estimated the proportion of abortion patients in the USA reporting perceived and internalized stigma, and assessed associations between those outcomes and women's sociodemographic, reproductive, and situational characteristics by race/ethnicity from a nationally representative dataset. Two-thirds of women reported that some people would look down on them if they knew about the abortion, and more than half of the respondents reported needing to keep their abortion a secret from friends and family. Associations between women's characteristics and abortion stigma varied by race/ethnicity. Results indicate that many abortion patients in the USA perceive and internalize stigma; certain subgroups of women are more likely to perceive or internalize stigma than others.

Internalized stigma in schizophrenia: Relations with dysfunctional attitudes, symptoms, and quality of life

Article

Sep 2012
PSYCHIAT RES

Internalized stigma refers to the process by which individuals with mental illness apply negative stereotypes to themselves, expect to be rejected by others, and feel alienated from society. Though internalized stigma has been hypothesized to be associated with maladaptive cognitions and expectations of failure, this relationship with dysfunctional attitudes has not been fully examined. In the present study, 49 individuals with schizophrenia or schizoaffective disorder completed the Internalized Stigma of Mental Illness Scale (ISMI; Ritsher et al., 2003) in addition to measures tapping defeatist performance beliefs, beliefs regarding low likelihood of success and limited resources, negative symptoms, depression, and quality of life. Consistent with prior research, internalized stigma was correlated with depression and quality of life but not with negative symptoms. Further, internalized stigma was correlated with both measures of dysfunctional attitudes. After controlling for depressive symptomatology, the relationship between internalized stigma and beliefs regarding low likelihood of success and limited resources remained significant, and though the correlation between defeatist performance beliefs and internalized stigma was no longer significant, it was of a similar magnitude. Overall, these data suggest that dysfunctional attitudes play a role in internalized stigma in individuals with schizophrenia, indicating a possible point of intervention.

The effect of culture on symptom reporting: Hispanics and irritable bowel syndrome

Article

May 2007
J AM ACAD NURSE PRAC

Purpose: To explore whether the symptoms reported by Mexican–American patients with irritable bowel syndrome (IBS) meet the current diagnostic criteria. Data sources: A retrospective review of charts of Mexican–American patients diagnosed with IBS at three large medical centers in central California was performed. Demographic information was extracted, and descriptive statistics were used to determine how symptoms were reported and whether the described symptoms met the Rome II criteria. Conclusions: Only 63% of the Mexican–American patients in this study reported symptoms that met any of the nine Rome II criteria. There was no significant difference between patients who were English dominant and those who were monolingual Spanish in the concordance of their presenting complaint and the current diagnostic criteria. In addition, there was no significant gender difference in the rate at which symptoms met the Rome II criteria. Implications for practice: Assessment of illness and its symptoms requires that the practitioner have a clear understanding of what the illness means to the patient in order to develop an accurate diagnosis and an appropriate and timely plan of treatment. This study highlights the necessity of revising the symptom-based criteria for diagnosing IBS to include a wider array of reported complaints, taking into account the impact of culture on the perception and description of symptoms.

Relaxation training as a treatment for irritable bowel syndrome

Article

Jan 1993

Although there have been many successful, controlled demonstrations of the clinical efficacy of multicomponent treatments for irritable bowel syndrome (IBS), in the present study we sought to evaluate a single component of many of these regimens, relaxation training. Eight IBS patients received a 10-session (over 8 weeks) regimen of abbreviated progressive muscle relaxation with regular home practice while 8 comparable patients merely monitored GI symptoms. Based on daily GI symptom diaries collected for 4 weeks before and 4 weeks after treatment (or continued symptom monitoring), the Relaxation condition showed significantly (p=.05) more improvement on a composite measure of primary GI symptom reduction than the Symptom Monitoring condition. Fifty percent of the Relaxation group were clinically improved at the end of treatment.

The brain - Gut pathway in functional gastrointestinal disorders is bidirectional: A 12-year prospective population-based study

Article

Jan 2012
GUT

Psychological factors are known to be associated with functional gastrointestinal disorders (FGIDs) including irritable bowel syndrome (IBS) and functional dyspepsia (FD). No prospective studies have evaluated whether it is the brain (eg, via anxiety) that drives gut symptoms, or whether gut dysfunction precipitates the central nervous system features such as anxiety. In a 12-year longitudinal, prospective, population-based study, we aimed to determine the directionality of the brain-gut mechanism in FGIDs. Participants (n=1775) were a random population sample from Australia who responded to a survey on FGIDs in 1997 and agreed to be contacted for future research; 1002 completed the 12-year follow-up survey (response rate =60%), with 217, 82 and 45 people meeting Rome II for new onset FGIDs, IBS and FD, respectively. Anxiety and depression were measured using the Delusions Symptom States Inventory at baseline and follow-up. Among people free of a FGID at baseline, higher levels of anxiety (OR 1.11; 95% CI 1.03 to 1.19, p=0.006) but not depression at baseline was a significant independent predictor of developing new onset FGIDs 12 years later. Among people who did not have elevated levels of anxiety and depression at baseline, those with a FGID at baseline had significantly higher levels of anxiety and depression at follow-up (mean difference coefficient 0.76, p<0.001 and 0.30, p=0.01 for anxiety and depression, respectively). In IBS higher levels of anxiety and depression at baseline were predictive of IBS at follow-up, while only depression was predictive of FD at follow-up. The central nervous system and gut interact bidirectionally in FGIDs.

Self-Administered Cognitive Behavior Therapy for Moderate to Severe Irritable Bowel Syndrome: Clinical Efficacy, Tolerability, Feasibility

Article

Aug 2008

Given the limitations of conventional therapies and restrictions imposed on newer pharmacologic agents, there is an urgent need to develop efficacious and efficient treatments that teach patients behavioral self-management skills for relieving irritable bowel syndrome (IBS) symptoms and associated problems. Seventy-five Rome II diagnosed IBS patients (86% female) without comorbid gastrointestinal disease were recruited from local physicians and the community and randomized to either 2 versions of cognitive behavior therapy (CBT) (10-session, therapist-administered CBT vs 4-session, patient-administered CBT) or a wait list control (WLC) that controlled for threats to internal validity. Final assessment occurred 2 weeks after the 10-week treatment phase ended. Outcome measures included adequate relief from pain and bowel symptoms, global improvement of IBS symptoms (CGI-Improvement Scale), IBS symptom severity scale (IBS SSS), quality of life (IBSQOL), psychological distress (Brief Symptom Inventory), and patient satisfaction (Client Satisfaction Scale). At week 12, both CBT versions were significantly (P < .05) superior to WLC in the percentage of participants reporting adequate relief (eg, minimal contact CBT, 72%; standard CBT, 60.9%; WLC, 7.4%) and improvement of symptoms. CBT-treated patients reported significantly improved quality of life and IBS symptom severity but not psychological distress relative to WLC patients (P < .0001). Data from this pilot study lend preliminary empirical support to a brief patient-administered CBT regimen capable of providing short-term relief from IBS symptoms largely unresponsive to conventional therapies.

Clinical Correlates of the Weight Bias Internalization Scale in a Sample of Obese Adolescents Seeking Bariatric Surgery

Article

May 2011
OBESITY

The aim of this study was to evaluate psychometric properties and clinical correlates of the Weight Bias Internalization Scale (WBIS) in a sample of obese adolescents seeking bariatric surgery. Sixty five adolescents enrolled in a bariatric surgery program at a large, urban medical center completed psychiatric evaluations, self-report questionnaires including the WBIS and other measures of psychopathology and physical assessments. The WBIS had high internal consistency (Cronbach's α = 0.92). As in previous research with adults, the one underlying factor structure was replicated and 10 of the original 11 items were retained. The scale had significant partial correlations with depression (r = 0.19), anxiety (r = 0.465), social, and behavioral problems (r = 0.364), quality of life (r = -0.480), and eating (r = 0.579), shape (r = 0.815), and weight concerns (r = 0.545), controlling for BMI. However, WBIS scores did not predict current or past psychiatric diagnosis or treatment or past suicidal ideation. Overall, the WBIS had excellent psychometric properties in a sample of obese treatment-seeking adolescents and correlated significantly with levels of psychopathology. These findings suggest that the WBIS could be a useful tool for healthcare providers to assess internalized weight bias among treatment-seeking obese youth. Assessment of internalized weight bias among this clinical population has the potential to identify adolescents who might benefit from information on coping with weight stigma, which in turn may augment weight loss efforts.

Perceptions of illness stigma in patients with inflammatory bowel disease and irritable syndrome

Article

Mar 2011
QUAL LIFE RES

To compare the experiences of perceived stigma (PS) in both patients with irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) and examine its relationship to patient-reported outcomes in both patient populations. IBD and IBS patients were recruited from an outpatient gastroenterology clinic and online via support message boards and classifieds. Participants completed a series of questionnaires to measure the perception of illness stigma, psychological functioning, and clinical and demographic data. Two hundred and sixty-nine IBS and 227 IBD patients participated. IBS patients were more likely to report high levels of perceived stigma across a wider range of sources, with the largest difference being for health care providers. Twenty-seven percent of IBS patients reported moderate to high levels of perceived stigma, compared with 8% of IBD. While perception of stigma was correlated with poorer patient-reported outcomes in both patient groups, correlations were larger for IBD compared with IBS. This study demonstrates that both IBD and IBS patients perceive stigma about their illness. As demonstrated by increased depression and anxiety, decreased self-esteem and self-efficacy, and lower quality of life in both patient groups, PS was shown to have a negative impact on clinical outcomes.

Correlates and consequences of internalized stigma for people living with mental illness: A systematic review and meta-analysis

Article

Oct 2010
SOC SCI MED

An expansive body of research has investigated the experiences and adverse consequences of internalized stigma for people with mental illness. This article provides a systematic review and meta-analysis of the extant research regarding the empirical relationship between internalized stigma and a range of sociodemographic, psychosocial, and psychiatric variables for people who live with mental illness. An exhaustive review of the research literature was performed on all articles published in English that assessed a statistical relationship between internalized stigma and at least one other variable for adults who live with mental illness. In total, 127 articles met the inclusion criteria for systematic review, of which, data from 45 articles were extracted for meta-analyses. None of the sociodemographic variables that were included in the study were consistently or strongly correlated with levels of internalized stigma. The review uncovered a striking and robust negative relationship between internalized stigma and a range of psychosocial variables (e.g., hope, self-esteem, and empowerment). Regarding psychiatric variables, internalized stigma was positively associated with psychiatric symptom severity and negatively associated with treatment adherence. The review draws attention to the lack of longitudinal research in this area of study which has inhibited the clinical relevance of findings related to internalized stigma. The study also highlights the need for greater attention on disentangling the true nature of the relationship between internalized stigma and other psychosocial variables.

Internalized Societal Attitudes Moderate the Impact of Weight Stigma on Avoidance of Exercise

Article

Apr 2011
OBESITY

Experiences with weight stigma negatively impact both psychological outcomes (e.g., body dissatisfaction, depression) and behavioral outcomes (e.g., dieting, exercise). However, not everyone is equally affected by experiences with weight stigma. This study examined whether internalized societal attitudes about weight moderated the impact of weight stigma. Adult participants (n = 111) completed measures of experiences with weight stigma, as well as two indexes of internalized societal attitudes (the moderators): Internalized anti-fat attitudes and internalization of societal standards of attractiveness. Psychological outcomes included self-esteem, body dissatisfaction, drive for thinness, and bulimic symptoms; behavioral outcomes included avoidance of exercise and self-reported exercise behavior. Weight stigma was positively correlated with body dissatisfaction, drive for thinness, and bulimic symptoms, and was negatively correlated with state and trait self-esteem. Both indexes of internalized attitudes moderated the association between weight stigma and avoidance of exercise: Individuals high in anti-fat attitudes and high in internalization of societal standards of attractiveness were more motivated to avoid exercise if they also experienced a high degree of weight stigma; individuals low in anti-fat attitudes and low in internalization were relatively unaffected. Avoidance of exercise was negatively correlated with self-reported strenuous exercise. These findings suggest that weight stigma can negatively influence motivation to exercise, particularly among individuals who have internalized societal attitudes about weight. Reducing internalization might be a means of minimizing the negative impact of weight stigma and of facilitating healthy weight management efforts.

My body, my life, my choice: Practices and meanings of complementary and alternative medicine among a sample of Australian people living with HIV/AIDS and their practitioners

Article

Oct 2010
AIDS CARE

In this study we examine the sociocultural meaning and use of complementary and alternative medicine (CAM) by nine people living with HIV/AIDS (PLWHA) and four CAM practitioners. Analysis revealed five themes: focus on health not illness; resistance to antiretroviral therapy and adherence; allopathic medicine as narrow; difficulty disclosing to doctors; and a continuum of CAM that sometimes included conventional medicine and sometimes excluded it entirely. Literature on PLWHA in the West commonly describes them as sophisticated health consumers. We explore the concepts of individual responsibility in relation to health, holism, control and well-being in the context of CAM. We also consider the meaning and significance of CAM and western medicine to comment on the contemporary experience of HIV, including the possible impact of stigma and the perceived limits of allopathic medicine among some PLWHA. Understanding this will enable better insight into the treatment choices of PLWHA, particularly those who may be described as sceptical of conventional medical science.

The burden of IBS: Looking at metrics

Article

Sep 2009
Curr Gastroenterol Rep

Brennan Spiegel

Irritable bowel syndrome (IBS) is a prevalent and expensive condition that significantly impairs health-related quality of life (HRQOL) and reduces work productivity. Based on strict criteria, 7% to 10% of people have IBS worldwide. Community-based data indicate that IBS-diarrhea and IBS-mixed subtypes are more prevalent than IBS-constipation, and that patients may switch among subtype groups. IBS is 1.5 times more common in women than in men, more common in lower socioeconomic groups, and more commonly diagnosed in patients younger than 50 years of age. Patients with IBS visit the doctor more frequently, use more diagnostic tests, consume more medications, miss more workdays, have lower work productivity, are hospitalized more frequently, and consume more overall direct costs than those without IBS. Resource utilization is highest in patients with severe symptoms and poor HRQOL. Treatment decisions should be tailored to the severity of each patient's symptoms and HRQOL decrement.

Stigma Resistance in Patients With Schizophrenia

Article

Jul 2009

An individual's capacity to counteract the stigma of mental illness, stigma resistance (SR), is considered as playing a crucial role in fighting stigma. However, little is known about SR and its correlates in patients with schizophrenia or schizoaffective disorder. Exploring SR in patients with schizophrenia or schizoaffective disorder. One hundred fifty-seven participants completed the "Internalized Stigma of Mental Illness" (ISMI) Scale including its subscale on SR. Measures of perceived devaluation and discrimination, depression, self-esteem, empowerment, quality of life, and demographic and clinical variables were obtained. Two-thirds of all patients showed high SR. SR correlated positively with self-esteem, empowerment, and quality of life and negatively with stigma measures and depression. A social network with a sufficient number of friends, being single or married, in contrast to being separated, as well as receiving outpatient treatment, was associated with higher SR. SR is a new and promising concept. The development of stigma-resisting beliefs might help individuals in their hope of finding a fulfilling life and in their recovery from mental illness.

Development and initial validation of a measure of perceived stigma in irritable bowel syndrome

Article

Jun 2009
Psychol Health Med

Irritable bowel syndrome (IBS) is a poorly understood digestive disorder prone to stigmatization. We developed a measure of condition-specific perceived stigma to better understand the role of stigma in this common disorder. Questionnaire items were established through structured patient interviews. A 10-item measure assessing relevant stigma variables across social domains was then administered to 148 patients with IBS. Test-retest reliability was assessed by having a subset of 26 patients re-complete the measure after 2 weeks. Twenty-eight out of 49 (57%) interview subjects with some degree of perceived stigma related to their IBS. A 10-item measure was developed with the following areas of perceived stigmatization: limited disclosure of IBS; belief that public knowledge about IBS was low; feeling that IBS was not taken seriously; people implying that IBS symptoms are self-inflicted; role limitations because of IBS; and others having the belief that IBS is 'all in their head'. Respondents rated the 10 items on the new measure with respect to perceived stigma in the social domains of healthcare providers; spouses/significant others; family members; friends; boss/supervisor; and coworkers/classmates. Stigma scores were significantly correlated with scores from the modified HIV stigma instrument (r = 0.56; p < 0.0001). Cronbach's alpha was estimated at 0.91. Mean inter-item correlation was 0.50 and ranged from 0.29 to 0.71. Guttman's split-half reliability coefficient was estimated at 0.89. Test-retest reliability was high (r = 0.91; p < 0.0001). Patients with IBS reported the greatest degrees of perceived stigma related to coworkers, employers, and friends. Stigma dimensions which received the highest scores focused upon limited knowledge of IBS by others along with a lack of interest or understanding of others towards the condition. The IBS perceived stigma scale is a reliable, valid measure of perceived stigma related to IBS.

What Makes Individuals With Gastroesophageal Reflux Disease Dissatisfied With Their Treatment?

Article

Apr 2009

Peter Bytzer

Despite the efficacy of proton pump inhibitors (PPIs) as therapeutics for patients with gastroesophageal reflux disease (GERD) in randomized controlled trials, a number of studies have shown that a proportion of patients with GERD are not satisfied with their treatment. This article reviews the possible reasons why patients are dissatisfied with the way their disease is managed. Studies published between 1970 and 2007 were identified from PubMed, EMBASE, and the author's existing database. The 2708 publications were reviewed, and irrelevant ones were excluded. Eleven studies were found to be appropriate for use in this review. Patients who are given prescriptions for PPIs tend to be more satisfied than those given H(2)-receptor antagonists. Partial responders are likely to be more dissatisfied than patients whose symptoms are fully resolved. A decrease in health-related quality of life is associated with greater dissatisfaction. Patients are more likely to be satisfied if they are taken seriously by their physician and if their symptoms are investigated. They are also more likely to be satisfied if the patient-physician consultation is interactive. Patient satisfaction is a complex issue that depends on many factors. Patient satisfaction can be influenced by treatment regimen, general level of well-being, the bedside manner of the physician, and the quality of patient-physician communication. Improvements in recognition of GERD can improve management of the disease as well as patient satisfaction with their care and treatment.

Impact of Perceived Stigma on Inflammatory Bowel Disease Patient Outcomes

Article

Aug 2009
INFLAMM BOWEL DIS

Perceived stigma has been linked to disease outcome in several chronic illnesses. Stigmatization of illness often leads to increased psychological distress and poorer quality of life. While body stigma has been identified as a specific inflammatory bowel disease (IBD) patient concern, no study to date has systematically investigated the presence of stigma in IBD or its effects on disease course and management. Participants were recruited online and through the Illinois chapter of the Crohn's & Colitis Foundation of America. A screening measure was used to identify an established IBD diagnosis. Patients completed the Perceived Stigma Scale in IBS, Inflammatory Bowel Disease Questionnaire, Rosenberg Self-Esteem Scale, General Self-Efficacy Scale, the Brief Symptom Inventory, and the Rating Form of IBD Patient Concerns. A total of 211 patients (156 CD, 55 UC) with a confirmed diagnosis for a minimum of 6 months completed the study. Eighty-four percent of participants reported perceived stigma. Hierarchical regression demonstrated that perceived stigma accounted for 10%-22% of the variance in health-related quality of life scores, 4%-16% for psychological distress, 5% for medication adherence, 19% for self-esteem, and 8% for self-efficacy. Effect sizes were small, but comparable with more traditionally evaluated patient variables. The majority of IBD patients report some perceived stigmatization. These results suggest that perceived stigma is a significant predictor of poorer outcomes in patients with IBD when controlling for illness and demographic variables. Perceived stigma is a potentially important psychosocial factor in IBD patient care and warrants further investigation.

Patient Trust-in-Physician and Race Are Predictors of Adherence to Medical Management in Inflammatory Bowel Disease

Article

Aug 2009
INFLAMM BOWEL DIS

Adherence plays an important role in the therapeutic effectiveness of medical therapy in inflammatory bowel disease (IBD). We assessed whether trust-in-physician and Black race were predictors of adherence. We performed a cross-sectional study of Black (n = 120) and White (n = 115) IBD patients recruited from an outpatient IBD clinic. Self-reported adherence to taking medication and keeping appointments, trust-in-physician, and health-related quality of life were measured using the validated instruments, the modified Hill-Bone Compliance Scale (HBCS), the Trust-in-Physician Scale (TIPS), and the Short IBD Questionnaire (SIBDQ), respectively. Overall adherence was 65%. Higher adherence correlated with greater trust-in-physician (r = -0.30; P < 0.0001), increasing age (r = -0.19; P = 0.01), and worsening health-related quality of life (r = -0.18; P = 0.01). Adherence was also higher among White IBD patients compared to Blacks (HBSC: 15.6 versus 14.0, P < 0.0001). Trust-in-physician, race, and age remained predictors of adherence to medical management after adjustment for employment, income, health insurance, marital and socioeconomic status, and immunomodulator therapy. The adjusted odds ratio for adherence in Blacks compared to Whites was 0.29 (95% confidence interval: 0.13-0.64). Every half standard deviation increase in trust-in-physician and every incremental decade in age were associated with 36% and 47% higher likelihood of adherence, respectively. Trust-in-physician is a potentially modifiable predictor of adherence to IBD medical therapy. Black IBD patients exhibited lower adherence compared to their White counterparts. Understanding the mechanisms of these racial differences may lead to better optimization of therapeutic effectiveness.

Relaxation training as a treatment for irritable bowel syndrome

Article

Oct 1993
Biofeedback Self Regul

Although there have been many successful, controlled demonstrations of the clinical efficacy of multicomponent treatments for irritable bowel syndrome (IBS), in the present study we sought to evaluate a single component of many of these regimens, relaxation training. Eight IBS patients received a 10-session (over 8 weeks) regimen of abbreviated progressive muscle relaxation with regular home practice while 8 comparable patients merely monitored GI symptoms. Based on daily GI symptom diaries collected for 4 weeks before and 4 weeks after treatment (or continued symptom monitoring), the Relaxation condition showed significantly (p = .05) more improvement on a composite measure of primary GI symptom reduction than the Symptom Monitoring condition. Fifty percent of the Relaxation group were clinically improved at the end of treatment.

Evaluation of a new quality of questionnaire for patients with irritable bowel syndrome

Article

Jul 1997

We describe the development and evaluation of a new disease-specific instrument, the Irritable Bowel Syndrome Quality of Life Questionnaire (IBSQOL), which was designed for use in patients with irritable bowel syndrome. The IBSQOL measures 10 domains found to be relevant to patients with irritable bowel syndrome: emotional health, mental health, health belief, sleep, energy, physical functioning, diet, social role, physical role, and sexual relations. During its development and evaluation, the IBSQOL was administered to over 500 patients with irritable bowel syndrome--two groups of patients from tertiary care centres, three focus groups of 8-12 patients each, and 287 patients in a national irritable bowel syndrome support network. As a control, the IBSQOL was also administered to 37 patients who did not have irritable bowel syndrome but had other gastrointestinal disorders. Statistical analyses to test the reliability and validity of the IBSQOL were performed using Cronbach's alpha coefficient. Responses from the focus groups indicated that the IBSQOL was easy to complete and did not require too much time to fill out (approximately equal to 25 min). Statistical analyses of the final 30-item version of the IBSQOL demonstrated that it had both adequate validity and reliability (alpha > or = 0.60). A comparison of mean IBSQOL scores of persons with and without irritable bowel syndrome (but with other gastrointestinal conditions) showed no difference between the two groups with irritable bowel syndrome; however, scores for both irritable bowel syndrome groups were considerably lower than for the non-irritable bowel syndrome group, suggesting better health-related quality of life in patients who do not have irritable bowel syndrome. This further demonstrated the validity of the IBSQOL in targeting questions and domains specific to patients with irritable bowel syndrome. Evaluation of the IBSQOL included testing the questionnaire in a large number of patients, which resulted in a revised and well-constructed instrument that demonstrated both adequate validity and reliability. The IBSQOL is currently being used in large-scale clinical trials to measure changes in quality of life in patients with irritable bowel syndrome following treatment intervention.

Stigma and Disease: Changing Paradigms

Article

Oct 1998

Graham Scambler

But if diseases are not invariably stigmatising, some diseases and symptoms of disease clearly are, although which ones vary historically and across cultures. Sontag has argued that different diseases have aroused particular feelings of dread or repulsion during different eras. In the present century in the developed world, she contends, cancer has displaced tuberculosis in this respect. 3 It has been suggested too that in contemporary developed cultures more stigma typically attaches to disorders for which people are considered culpable (ie, achieved rather than ascribed stigma), and to conditions of the mind rather than the body. 4 Stigmatising diseases can be further distinguished by their visibility and intrusiveness. Goffman describes those with disorders that are stigmatising and that cannot be hidden or disguised (eg, blindness) as discredited, and those with conditions that allow people to “pass as normal” (eg, diabetes) as discreditable. Whereas the discredited may be confronted with problems of “impression management”, the discreditable may face difficulties of “information management”. 1

Moving beyond perceptions: Internalized stigma in the irritable bowel syndrome

Abstract

No full-text available

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