Disease-related Stigma Research Articles

An evolutionary concept analysis: stigma among women living with hepatitis C

BackgroundStigma is a complex social phenomenon that leads to marginalization and influences the course of illness. In the context of hepatitis C virus (HCV), stigma is a well-documented barrier to accessing care, treatment, and cure. In recent years, HCV rates among women have increased, resulting in an urgent need to address stigma and its harmful effects. The purpose of this concept analysis was to investigate stigma in the context of women living with HCV using Rodgers’ evolutionary method.MethodsPubMed, CINAHL, Scopus, Medline, PsycINFO, and Nursing and Allied Health were used to identify articles describing HCV stigma among women. Articles from peer-reviewed journals and geographic locations, published between 2002–2023, were included in the analysis. As specified in Rodgers’ evolutionary method, articles were analyzed with a focus on the concept’s context, surrogate and related terms, antecedents, attributes, examples, and consequences.ResultsFollowing screening, 33 articles were selected for inclusion in the analysis. Discrimination and marginalization were identified as surrogate and related terms to stigma; and antecedents of stigma were identified as limited knowledge, fear of diagnosis, and disclosure. Prevalent attributes of stigma in the literature were described as feelings of decreased self-worth, negative stereotyping, and fear of transmission. Importantly, HCV stigma among women is unique in comparison to other forms of infectious disease-related stigma, primarily due its impact on women’s identity as mothers and caregivers. Stigmatization of women living with HCV resulted in negative consequences to personal relationships and healthcare access due to decreased health-seeking behaviours. Although access to HCV treatment has changed considerably over time, a temporal analysis could not be completed due to the limited number of articles.ConclusionsStigma in the context of women living with HCV has its own unique antecedents, attributes, and consequences. This enhanced understanding of stigma among women living with HCV has the potential to inform improved and more effective approaches to care, which will be required to reach HCV elimination. Furthermore, this analysis identifies stigma layering and stigma in the direct-acting antiviral treatment era as areas for more in-depth future inquiry.

Oxytocin modulation of explicit pandemic stigma in men with varying social anxiety levels

ObjectiveStigma can create divisions within societies, hindering social cohesion and cooperation. Notably, it has significant public health implications, especially during infectious disease outbreaks like COVID-19. However, little is known about the neural and molecular basis of disease-related stigma and their association with individual differences. MethodsTo address this gap, we performed a double-blind, placebo-controlled, within-subject design study with 70 males, to investigate the effect of intranasal oxytocin (OT) administration on the explicit and implicit processing of disease-related stigma (i.e., COVID-19 stigma). After self-administrated 24 IU of OT or placebo, participants completed a stigma evaluation task and an Implicit Association Test (IAT) to assess the explicit and implicit processes of stigma evaluation, respectively. ResultsThe results showed that oxytocin amplified the differences between participants with high and low social anxiety in explicit COVID-19 stigma, with a higher inclination to attribute the stigmatized status of the stigmatized targets (i.e., COVID-19 related group) to personal causes in high social anxiety individuals, but reduced blame towards the stigmatized targets in low social anxiety individuals under oxytocin compared to placebo treatment. Furthermore, oxytocin strengthened the connections between responsibility attribution and the other processes (i.e., emotional, approach motivation, social deviance). While no modulation of oxytocin on implicit stigma emerged, oxytocin did modulate the associations between specific dimensions of explicit stigma (i.e., social deviance and approach motivation) and implicit stigma. ConclusionIn conclusion, these findings demonstrated that intranasal oxytocin administration could temporally impact the explicit cognitive judgment in disease-related stigma but not the implicit aspect; furthermore, it modulated in distinct ways in individuals with different levels of social anxiety. These findings highlight the trait-dependent oxytocin modulation on disease-related stigma, implying that oxytocin is partly involved in the endocrine system of disease-related stigma. By unraveling the molecular basis of stigma and its association with individual traits, such as social anxiety, we can tailor interventions to meet specific needs of different individuals in the future.

Stigma in steatotic liver disease: A survey of patients from Saudi Arabia.

A recent name change of nonalcoholic fatty liver disease (NAFLD) or metabolic dysfunction-associated fatty liver disease (MAFLD) to metabolic dysfunction-associated steatotic liver disease was primarily driven by potential stigma associated with the terminology. This stigma can be different between patients and healthcare providers and differ according to geographic regions of the world. Our aim was to better understand stigma and disease burden among patients with NAFLD enrolled in the global survey from Saudi Arabia (SA). Members of the Global NASH Council created a 68-item survey about patients' experience with NAFLD, covering history of stigmatization and discrimination due to the disease, various aspects of the disease burden [(Liver Disease Burden (LDB), 35 items, 7 domains], and perception of various diagnostic terms for NAFLD. Patients whose country of residence was SA were asked to complete the survey. The survey was completed by 804 patients with NAFLD from SA. Of all enrolled patients, 17% ever disclosed having NAFLD/nonalcoholic steatohepatitis (NASH) to family/friends. The most commonly used term for the disease was "fatty liver" (96% used it at least sometimes, 79% frequently or always). There were 3.7% who reported experiencing stigma or discrimination (at least sometimes) due to obesity/overweight versus only 2.7% due to NAFLD. Female patients reported a history of stigmatization or discrimination more frequently than males: 5.9% versus 3.0% due to obesity ( P = 0.06) and 5.4% versus 1.8% due to NAFLD ( P = 0.01). There were 43% of patients who reported ever missing or avoiding a visit to a primary care provider due to NAFLD (48% male vs 28% female, P < 0.0001). The greatest social-emotional burden among patients with NAFLD (by LDB) was being or being identified as a person with liver disease (10% agree, 4% male vs 26% female) and feeling like they could not do anything about their liver disease (6.4% agree, 3% male vs 16% female). Regarding how patients perceived diagnostic terms, there were no substantial differences between "fatty liver disease", "NAFLD", "NASH", and "MAFLD". Stigmatization in terms of disease burden, disease-related stigma, and perception of various diagnostic terms are rarely observed in patients with NAFLD in SA. In comparison to male patients, female patients with NAFLD reported more commonly a history of stigmatization and discrimination and a significantly greater disease burden. The findings will help inform policymakers to develop programs to increase awareness and provide education about stigma related to NAFLD.

Negative disease-related stigma 3-months after hemorrhagic stroke is related to functional outcome and female sex

ObjectivesThe objective of this study was to determine factors associated with negative disease-related stigma after hemorrhagic stroke. Materials and methodsPatients with non-traumatic hemorrhage (ICH or SAH) admitted between January 2015 and February 2021 were assessed by telephone 3-months after discharge using the Quality of Life in Neurological Disorders (Neuro-QoL) Negative Disease-Related Stigma Short Form inventory. We evaluated the relationship between disease-related stigma (T-score >50) and pre-stroke demographics, admission data, and poor functional outcome (3-month mRS score 3–5 and Barthel Index <100). ResultsWe included 89 patients (56 ICH and 33 SAH). The median age was 63 (IQR 50–69), 43 % were female, and 67 % graduated college. Admission median GCS score was 15 (IQR 13–15) and APACHE II score was 12 (IQR 9–17). 31 % had disease-related stigma. On univariate analysis, disease-related stigma was associated with female sex, non-completion of college, GCS score, APACHE II score, and 3-month mRS score (all p < 0.05). On multivariate analysis, disease-related stigma was associated with female sex (OR = 3.72, 95 % CI = 1.23–11.25, p = 0.02) and 3-month Barthel Index <100 (OR = 3.46, 95 % CI = 1.13–10.64, p = 0.03) on one model, and female sex (OR = 3.75, 95 % CI = 1.21–11.58, p = 0.02) and 3-month mRS score 3–5 (OR = 4.23, 95 % CI = 1.21–14.75, p = 0.02) on a second model. ConclusionFunctional outcome and female sex are associated with disease-related stigma 3-months after hemorrhagic stroke. Because stigma may negatively affect recovery, there is a need to understand the relationship between these factors to mitigate stroke-related stigma.

Stigma and quality of life in lung cancer patients: The mediating effect of distress and the moderated mediating effect of social support

ObjectiveThis study aimed to investigate the mediating effect of distress on the relationship between stigma and quality of life (QOL) in lung cancer patients, and to explore the moderated mediating effect of social support. MethodsA total of 184 individuals diagnosed with primary lung cancer participated in the study. Data on general and disease-related characteristics, stigma, distress, QOL, and social support were collected using a comprehensive structured questionnaire. Medical records were also utilized for an in-depth analysis of disease-related attributes. The data were meticulously analyzed using the SPSS PROCESS macro ver. 3.4 for detailed insights. ResultsThe findings elucidated a clear pathway whereby stigma negatively impacted patients' QOL through the mediating effect of distress. Interestingly, the extent of this impact was significantly influenced by the presence of friendship support, underscoring its unique moderated mediating role. Conversely, support from family and health care professionals did not demonstrate a significant influence in this context. ConclusionsThese findings underscore the importance of addressing stigma and distress to improve the QOL of lung cancer patients. The study highlights the pivotal role of friendship support in moderating this relationship, suggesting the need for tailored interventions to strengthen social networks. These insights provide valuable guidance for developing more nuanced and effective patient support strategies in oncology care.

Disease-related Stigma After Hemorrhagic Stroke is Related to Functional Outcome and Female Sex (P1-5.015)

Disease-related Stigma After Hemorrhagic Stroke is Related to Functional Outcome and Female Sex (P1-5.015)

Investigating the prevalence of body dysmorphic disorder among Jordanian adults with dermatologic and cosmetic concerns: a case–control study

Body Dysmorphic Disorder (BDD) is an underexplored psychiatric condition in Middle Eastern countries, particularly in patients with dermatologic concerns, where alterations in appearance may elevate the risk of BDD. We studied patients at Jordan University Hospital's general dermatology and cosmetic clinics from July to September 2022, comparing them to healthy controls. Patients with dermatologic conditions were evaluated per the International Classification of Diseases (ICD-10) criteria by trained dermatologists. All participants completed the Dysmorphic Concerns Questionnaire (DCQ), Perceived Stress Scale, Patient Health Questionnaire-2, General Anxiety Disorder Assessment tool-2. We assessed BDD prevalence using four DCQ cutoffs: 9, 11, 14, and 17, reporting effect sizes as odds ratios (OR). Our study involved 1500 participants, with an average age of 29.3 (± 14.8) years and a female-to-male ratio of 3.15-to-1. At the 9, 11, 14, and 17 DCQ cutoffs, BDD prevalence was 78.2%, 54.2%, 26.5%, and 11.7%, respectively. Patients with dermatologic concerns were more likely to exhibit clinical BDD symptoms than controls at the 11-cutoff (OR: 1.26; 95% CI 1.01–1.58; p < 0.05). Conversely, those with cosmetic concerns were more prone to clinical BDD than controls at cutoffs 9 (OR: 2.26; 95% CI 1.28–3.97; p < 0.05) and 11 (OR: 1.50; 95% CI 1.03–2.20; p < 0.05). Our logistic regression revealed consistent associations between higher DCQ scores and elevated anxiety, depression, perceived skin disease-related stigma, and reduced quality of life (p < 0.05). In conclusion, patients with dermatologic issues and those seeking cosmetic procedures are at significant risk of developing BDD, necessitating proactive screening and referrals for specialized care by dermatologists due to the associated psychological distress and unproductive consultations. Providing specialized training for healthcare professionals to establish an integrated care approach to address the needs of patients with BDD should be the focus of future research projects.

Disease-Related Stigma, Emotional Regulation and Depression in Patients with HIV

Background: HIV/AIDS has become one of the major global health burdens. Self-stigma and emotion dysregulation in people living with HIV (PLWH) have become urgent issues and have attracted the attention of both physicians and epidemiologists. Aim: To examine the relationship between disease-related stigma, emotional regulation, and depression in patients with HIV. Method: A cross-sectional study was conducted. A purposive sample of 100 patients—70 male and 30 female diagnosed with HIV/AIDS was collected from two public hospitals in southern Punjab. Patients who had been diagnosed as being HIV positive for at least three months were included in the study. The age range of participants was 18 to 50 years. Patients with other medical issues were excluded from the study. Measures for data collection were the Discrimination and Stigma Scale (DISC), Difficulties in Emotional Regulation Scale (DERS), and Hamilton Depression Scale. The data was evaluated using SPSS version 24. Pearson’s correlation was applied. Results: There is an inverse relationship (-.34**) obtained between disease-related stigma and emotional regulation, whereas a significant positive relationship (r =.41**) is found between disease-related stigma and depression. A negative relationship (r=-.59**) is also examined between emotional regulation and depression. Emotional regulation is a mediator between disease-related stigma and depression in patients with HIV. There is a significant gender difference in depression. The mean score of depression is high among females as compared to males. Practical Implication: It improved the psychological health of HIV-positive patients by categorizing the issues they face. Conclusion: It was concluded that disease-related stigma is positively related to depression while emotional regulation is inversely related to depression. Emotional regulation also plays a mediating role between self-stigma and depression in patients with HIV positive. Women scored higher on depression as compared to men. Keywords: HIV Patients, Psychological Impact, Psychological Distress and Social Stigma.

Disease characteristics influence the privacy calculus to adopt electronic health records: A survey study in Germany.

The electronic health record (EHR) is integral to improving healthcare efficiency and quality. Its successful implementation hinges on patient willingness to use it, particularly in Germany where concerns about data security and privacy significantly influence usage intention. Little is known about how specific characteristics of medical data influence patients' intention to use the EHR. This study aims to validate the privacy calculus model (PCM) regarding EHRs and to assess how personal and disease characteristics, namely disease-related stigma and disease time course, affect PCM predictions. An online survey was conducted to empirically validate the PCM for EHR, incorporating a case vignette varying in disease-related stigma (high/low) and time course (acute/chronic), with N = 241 participants, aged 18 years and older residing in Germany with no previous experience with the diseases mentioned in the respective medical reports. Participants were randomized (single-blinded) into four groups in parallel: high stigma and acute time course (n = 74), high stigma and chronic time course (n = 56), low stigma and acute time course (n = 62) and low stigma and chronic time course (n = 49). The data were analyzed using structural equation modeling with partial least squares. The model explains R² = 71.8% of the variance in intention to use. The intention to use is influenced by perceived benefits, data privacy concerns, trust in the provider, and social norms. However, only the disease's time course, not stigma, affects this intention. For acute diseases, perceived benefits and social norms are influential, whereas for chronic diseases, perceived benefits, privacy concerns, and trust in the provider influence intention. The PCM validation for EHRs reveals that personal and disease characteristics shape usage intention in Germany. The need for tailored EHR adoption strategies that address specific needs and concerns of patients with different disease types. Such strategies could lead to a more successful and widespread implementation of EHRs, especially in privacy-conscious contexts.

COVID-19-related stigma within a rural South African community: A mixed methods analysis.

Infectious disease-related stigma is a pervasive global issue that impedes disease control efforts by increasing reluctance to seek treatment or engagement in prevention behaviors for fear of ostracism. Despite this, there is limited research on COVID-19 stigma in Africa, specifically rural South Africa, which has faced infectious disease-related stigma throughout the HIV epidemic. Population-based surveys were conducted among 1,662 adults living in the Agincourt Health and Socio-Demographic Surveillance System (AHDSS) area in Mpumalanga, South Africa, in August-October 2020 and August-October 2021. Surveys measured anticipated COVID-19-related stigma from low to high levels. Changes in stigma between surveys were compared using Wilcoxon ranked sign tests, and log-binomial models estimated the association between socio-demographic factors and anticipated stigma at both intervals. Qualitative interviews were conducted in 2022 among 31 adults who completed the original surveys, and the data were analyzed thematically to describe anticipated, perceived, and enacted stigma. Anticipated stigma significantly decreased from the first to the second survey (p-value:<0.0001). Stigma was significantly higher among older age groups. In 2020, those less knowledgeable about COVID-19 were 2.24 times as likely to have higher levels of anticipated stigma compared to those who were more knowledgeable (RR:2.24, 95% CI: 1.90,2.64). Fear of being stigmatized influenced willingness to disclose infection. Participants perceived COVID-19 stigma as similar to HIV/AIDS stigma, but concern and fear reduced over time, with differences observed across generations and sexes. For some, fear of death and mistrust of others endorsed enacting stigma toward others. While COVID-19 stigma decreased over time in rural South Africa, different forms of stigma persisted and influenced participants' willingness to reveal their COVID-19 infection status. Given South Africa's history with infectious disease-related stigma hindering public health efforts, it is crucial that government bodies prioritize strategies to mitigate stigma in rural communities.

Stigma and infectious diseases in Africa: examining impact and strategies for reduction

Stigma poses a significant barrier to accessing care, managing, and preventing infectious diseases in Africa. The authors conducted an extensive search across Scopus, PubMed, ScienceDirect, and Google Scholar to identify relevant English-language articles, with no constraints on publication dates, using the keywords “Stigma,” and “Infectious Disease,” in conjunction with “Africa.” This article explores the multifaceted nature of stigma associated with infectious diseases, highlighting its impact on healthcare access and public health outcomes. It delves into the current situation of infectious disease-related stigma in Africa, emphasizing the various diseases and contexts affected. The article identifies drivers of stigma, including negative attitudes, misinformation, and institutional practices, and discusses their role in perpetuating discrimination. Importantly, it provides recommendations for addressing infectious disease stigma in Africa through comprehensive strategies encompassing health education, contact-based interventions, professionalized counselling and peer support services, and community engagement. The article calls for collaboration among governments, healthcare organizations, NGOs, and community leaders to implement holistic strategies that prioritize inclusivity and stigma reduction. Ultimately, it underscores the urgent need to combat stigma to improve healthcare access and outcomes for individuals affected by infectious diseases in Africa.

Disease-Related Stigma, Stigmatizers, Causes, and Consequences: A Systematic Review.

Stigma is a sociological concept that is important in medicine and health because it threatens health as much as the disease itself. We aimed to explore the causes, stigmatizers, consequences and coping strategies related to the stigma of diseases by systematically analyzing relevant literature. This systematic review examined 65 articles on Disease-Related Stigma by searching Noormags, Magiran, SID, Google Scholar, and PubMed databases. The articles were published in Persian and English between 2001 and 2022 and conducted in Iran. We used a three-step systematic review process to select articles that met the research criteria. Conflict in society, lack of knowledge, specific characteristics of the disease, and the contagious nature of disease are the main causes of stigma, leading to stigmatization by different groups such as significant others, generalized others, institutional others, and macro others. Patients experiencing stigma face various psychological, physical, and social complications, and they may use concealment as a coping strategy, which can pose a potential threat to society's general health. By knowing the causes and stigmatizers of disease-related, it is possible to reduce stigma with less cost and time.

Barriers and Facilitators of Premarital Genetic Counseling for Sickle Cell Disease in Northern Nigeria.

In high-income countries, premarital genetic counseling for Sickle Cell Disease (SCD) is a standard practice. However, in Nigeria, there is no formal premarital genetic counseling program available for SCD. We conducted a series of focus group discussions with health care professionals, patients with SCD, and parents of the patients with or without SCD to gain an understanding of their attitudes and beliefs towards SCD/Sickle Cell Trait and premarital genetic counseling for SCD. Data were analyzed using Charmaz's constructivist grounded theory approach. Two themes were highlighted in the analysis as follows: (1) the difference between the perception of premarital sickle cell screening among individuals with SCD versus the general population, and (2) the personal beliefs and physical challenges that could lead to the avoidance of premarital screening within the general community. Lack of disease-related knowledge, testing facilities, transportation, and stigma associated with the disease were the most commonly perceived barriers to premarital testing. Also, a willingness to receive premarital testing for SCD exists within our community to reduce the spread of the disease and advocate for improved health-related quality of life of patients with SCD. The content and structure of a premarital genetic counseling program in Kano, Northern Nigeria, needs to be developed.

IBD Camp Oasis: A look at Participants' Social-Emotional Well-Being and Protective Factors During Camp and Beyond.

Camp Oasis is an annual week-long camp serving children with inflammatory bowel disease (IBD) and hosted by the Crohn's and Colitis Foundation. Youth with IBD are at increased risk for mental health challenges, with Camp Oasis potentially mitigating these risks. The aim of this study is to measure change in and predictors of social-emotional well-being and protective factors of self-worth as a result of attending Camp Oasis. Between 2012 and 2019, a voluntary survey was administered to participants and their caregivers to reflect on their perceptions of social/emotional well-being and protective factors related to chronic disease. T-tests compared change in participants' and caregivers' perceptions before and after camp; path analyses examined the key predictors of social-emotional well-being. A total of 6011 online surveys were analyzed. Participants and caregivers reported consistently positive perceptions of participants' experiences during and after camp. Significant improvements in confidence, independence, activity, comfort around others, being more open about disease, and taking medication as expected were observed. Being new to Camp Oasis was one of the strongest predictors of both disease-related self-efficacy and social connections after camp. The uniformly high rates of participants' perceptions during camp suggest camp is a life-changing experience for youth with IBD, reduces disease-related stigma, and enhances confidence and social skills. Participants' positive experiences appear to foster notable benefits after camp in terms of openness, their sense of belonging, connections, and confidence.

COVID-19-related stigma among infected people in Sweden; psychometric properties and levels of stigma in two cohorts as measured by a COVID-19 stigma scale.

Epidemics have historically been accompanied by stigma and discrimination. Disease-related stigma has often been shown to have severe consequences for physical, mental and social wellbeing and lead to barriers to diagnosis, treatment and prevention. The aims of this study were to investigate if a HIV-related stigma measure could be adapted and valid and reliable to measure COVID-19-related stigma, and also to investigate levels of self-reported stigma and related factors among people in Sweden with experience of COVID-19 and compare levels of COVID-19-related stigma versus HIV-related stigma among persons living with HIV who had experienced a COVID-19 event. Cognitive interviews (n = 11) and cross-sectional surveys were made after the acute phase of the illness using a new 12-item COVID-19 Stigma Scale and the established 12-item HIV Stigma Scale in two cohorts (people who had experienced COVID-19 (n = 166/209, 79%) and people living with HIV who had experienced a COVID-19 event (n = 50/91, 55%). Psychometric analysis of the COVID-19 Stigma Scale was performed by calculating floor and ceiling effects, Cronbach's α and exploratory factor analysis. Levels of COVID-19 stigma between groups were analysed using the Mann-Whitney U test. Levels of COVID-19 and HIV stigma among people living with HIV with a COVID-19 event were compared using the Wilcoxon signed-rank test. The COVID-19 cohort consisted of 88 (53%) men and 78 (47%) women, mean age 51 (19-80); 143 (87%) living in a higher and 22 (13%) in a lower income area. The HIV + COVID-19 cohort consisted of 34 (68%) men and 16 (32%) women, mean age 51 (26-79); 20 (40%) living in a higher and 30 (60%) in a lower income area. The cognitive interviews showed that the stigma items were easy to understand. Factor analysis suggested a four-factor solution accounting for 77% of the total variance. There were no cross loadings, but two items loaded on factors differing from the original scale. All subscales had acceptable internal consistency, showed high floor and no ceiling effects. There was no statistically significant difference between COVID-19 stigma scores between the two cohorts or between genders. People living in lower income areas reported more negative self-image and concerns about public attitudes related to COVID-19 than people in higher income areas (median score 3 vs 3 and 4 vs 3 on a scale from 3-12, Z = -1.980, p = 0.048 and Z = -2.023, p = 0.024, respectively). People from the HIV + COVID-19 cohort reported more HIV than COVID-19 stigma. The adapted 12-item COVID-19 Stigma Scale may be valid and reliable for measurement of COVID-19-related stigma. However, specific items may need to be rephrased or replaced to better correspond to the COVID-19 context. People who had experienced COVID-19 reported low levels of COVID-19-related stigma in general but people from lower income areas had higher levels of negative self-image and concerns about public attitudes related to COVID-19 than people from areas with higher income, which may call for targeted interventions. Although exhibiting more pronounced HIV stigma levels, people living with HIV who had experienced COVID-19 reported COVID-19-related stigma of the same low magnitude as their peers not living with HIV.

Disease-related stigma among people who inject drugs in Toronto amidst the COVID-19 pandemic

BackgroundStigma overwhelmingly affects people who inject drugs. The COVID-19 pandemic posed unique challenges for people who inject drugs, who are already stigmatized as being “dangerous and spreading disease.” The present study explored ways in which stigma was experienced by a sample of people who inject drugs in Toronto, Canada following COVID-related public health precaution measures. MethodsQualitative interviews were conducted with people who inject drugs (n = 24) recruited from supervised consumption sites in Toronto, Canada. The semi-structured interview guide focused on the impact of COVID-19 on participants’ health and social well-being. Interviews took place six-months after initial COVID-19 precautions (September-October 2020). We used thematic analysis to examine findings, with stigma being an emergent theme. ResultsParticipants described heightened acts of stigma after COVID-19 restrictions were implemented, including feeling treated as “diseased” and the cause of COVID-19′s spread. They reported being less likely to receive emergency care during events such as overdoses. Participants perceived increased disease-related stigma evident through actions of stigma, including amplified dehumanization by the public, others avoiding all contact with them, and more discrimination by police and hospital systems. ConclusionParticipants provided specific examples of how stigmatizing behaviors harmed them after COVID-19 precautions began. It is plausible that stigma contributed to the dramatic increase in fatal overdoses, difficulty accessing housing, and further difficulty accessing needed healthcare in our setting. Integrating evidence-based harm reduction approaches in areas where stigma is evident might offset harms stemming from disease-related stigma and mitigate these harms during future public health emergencies.

"As if we are branded with the mark of Cain": stigma, guilt, and shame experienced by COVID-19 survivors in Israel - a qualitative study.

Stigma is associated with harmful health outcomes, and it fuels social and health inequalities. It can undermine social cohesion and encourage social exclusion of groups, which may contribute to secrecy about disease symptoms, avoidance of disease testing and vaccination, and further spread of a contagious illness. Stigmatization is a social process set to exclude those who are perceived to be a potential source of disease and may pose a threat to effective interpersonal and social relationships. In this qualitative study, we delved into the stigmatization experiences of twenty COVID-19 recovered patients during the COVID-19 first wave, using in-depth semi-structured interviews conducted during November 2020. Using thematic analysis, we found that the process of stigmatization was all-encompassing, from the stage of diagnosis throughout the duration of the disease and the recovery phases. On the basis of the data, we hypothesized that stigma is a significant public health concern, and effective and comprehensive interventions are needed to counteract the damaging and insidious effects during infectious disease pandemics such as COVID-19, and reduce infectious disease-related stigma. Interventions should address provision of emotional support frameworks for the victims of stigmatization and discrimination that accompany the COVID-19 pandemic and future pandemics. This study was conducted in the early days of the COVID-19 pandemic, when uncertainty about the disease was high and fear of contamination fueled high levels of stigmatization against those who became ill with Covid-19.

EFFECTIVENESS OF INDIVIDUALIZED EMPOWERMENT EDUCATION ON CHILDREN WITH BETA-THALASSEMIA MAJOR: A MIXED-METHOD STUDY

In this study, it was aimed to identify the problems related to the disease process of 12-18 years old children with Beta-Thalassemia Major and to examine the effectiveness of individualized empowerment education regarding these needs. This research is a mixed-type study. In the first stage, it is aimed to determine the problems and needs of children with BTM in relation to the disease process; the phenomenological method was used. In the second stage, the pre/post-test controlled quasi-experimental method was used in a single group. "Descriptive Information Form", "Semi-Structured Interview Form" and "Questionnaire for Determining the Needs of Children with Beta Thalassemia Major" were used to collect data. The first stage, three themes were formed: treatment process, family process, and social life. Children stated that they had health problems such as fatigue, headache, weakness before erythrocyte transfusion. Also, the children felt unhappy, sad, and angry because of disease-related stigma. In the second stage, a statistically significant difference was found between the total mean scores of the empowerment education pre-test, first post-test and second post-test(X 2 =26.00, p&amp;lt;.001). As a result of the study, it was determined that individualized empowerment education had a positive effect on children's knowledge of the disease, treatment process, mother/father relationship and social life needs.

UNDERSTANDING CHALLENGES AND STRENGTHS EXPERIENCED BY CHINESE AMERICAN FAMILY CAREGIVERS OF PERSONS WITH DEMENTIA

Abstract Chinese American family caregivers of persons with dementia are often challenged by barriers to utilize caregiving support services due to language barriers, minimal understanding of dementia, limited numbers of culturally competent health care providers, as well as conflicting cultural norms, such as the disease related stigma. Subsequently, a delayed diagnosis and a hesitance to seek social support services and formal resources are prevalent among Chinese American families caring for persons with dementia. However, the resilience of these caregivers is often noted as a strength of this sub-population. We aimed to identify the challenges and strengths expressed by Chinese American family caregivers caring for persons with dementia by exploring their caregiving experiences. Using a qualitative study design, we conducted semi-structured, in-depth interviews with 26 Chinese American family caregivers of persons with dementia during the midst of COVID-19 pandemic. The data were analyzed using thematic analysis. Two themes emerged as challenges: lack of knowledge regarding early signs of dementia and family caregivers’ social isolation and loneliness. Two additional themes emerged as demonstrated strengths: utilizing technology throughout the caregiving trajectory and family caregivers’ helping behaviors. Our findings indicate potential to promote disease-related education and reduce feelings of social isolation and loneliness among Chinese family caregivers caring for persons with dementia by using technology and peer-led approaches. The examined coping strategies of Chinese American caregivers may be leveraged across disciplines to increase disease related knowledge, rates of early diagnosis, as well as the utilization of formal supports and resources.

Factors leading to delayed and challenging presentation of benign breast lumps in young females.

A delayed presentation of benign breast diseases may lead to a therapeutic challenge when they enlarge enormously or become multiple. Aim of this study was to evaluate the factors leading to delayed presentation of benign breast lumps. This cross-sectional study was conducted at Madinah Teaching Hospital and Allied Hospital, Faisalabad from January 2019 to October 2021. One hundred and forty five female patients were selected by non-probability purposive sampling. Patients with large size (>5cm) or multiple benign breast lumps were included. An interview was conducted using structured questionnaire translated in Urdu. Factors leading to delayed presentation and social impact scale for stigma were evaluated. Patients had a mean age of 26.52 ± 6.90 years. The average delay of seeking medical care was 8.48 ± 8.41 months. Factors leading to delayed presentation were; lack of knowledge n=112 (77.2%) and parda (religious issues) n=112 (77.2%), followed by poverty n=109 (75.2%), and fear of cancer n=90 (62.1%). All the sub-scales of stigma, i.e., social rejection, financial insecurity, internalized shame and social isolation were high in late presenters, though, only financial insecurity was significantly high in late presenters (p=0.03). Lack of awareness, socioeconomic factors and disease related stigma were the main factors related to delayed presentation in young females with benign breast diseases. Addressing these factors may improve timely diagnosis and management of delayed and challenging cases.