Disease-related Stigma Research Articles

Considering Health Care Needs in a Rural Parkinson Disease Community.

People living with Parkinson disease (PD) have multiple health care needs that intensify over time, because the disease is both chronic and degenerative. Past research indicates that issues with mobility, financial constraints, and lack of support networks impede access to health care for people with PD. These challenges are elevated for individuals who live in rural communities due to the lack of local health care professionals and specialists and support resources, and the need to travel to see providers/specialists. The research objective was to have PD community stakeholders identify health care barriers and resources as well as possibilities for improved health care in a rural state. Focus groups were conducted in the context of a community-based participatory research (CBPR) approach. Focus group data collection helped create comfort and parity in the discussion, while a CBPR approach allows for authenticity of the findings because members of the community in question are involved as researchers. The responses were recorded and transcribed verbatim. Coding and organizing of themes was completed manually and using NVIVO 10 software. Qualitative analysis revealed three main themes, PD issues, access issues, and stigma. These themes described disease-related stigma and concerns about disease progression and treatment, as well as challenges in accessing information, providers, and support by the PD stakeholders. The study results provided insight into the needs of people living with PD in rural communities. Rural PD stakeholders proposed the use of technology (e.g., telehealth) to provide support to improve health care for people with PD.

The challenges of hepatitis C management in Iran: A qualitative study with patients.

The patient's perspective concerning the treatment process and the knowledge of the challenges and problems that they encounter can help to improve their treatment conditions. The present study aimed at analyzing the experiences of hepatitis C virus (HCV) patients in Iran and the challenges encountered during the management and treatment process. Semi-structured in-depth and face-to-face interviews were conducted. The criteria for selecting patients were as follows: HCV-positive subjects, with confirmed diagnosis of HCV, and under treatment. Content analysis was used to analyze the data. MAXQDA Ver11 software was used to better manage data. This study is based on the "Consolidated Criteria for Reporting Qualitative Research" (COREQ) checklist. Twenty-one HCV patients were interviewed. The mean age of participants was 36.14 ± 11.29 years. Seven themes with 20 subthemes emerged from the content analysis of the interviews, namely, (a) disease-related stigma, (b) lack of knowledge, (c) psychological problems, (d) financial problems, (e) complications of treatment, (f) lack of family and community support, and (g) health-care system. The findings of this study showed that a range of economic, social, and cultural problems could affect the treatment of HCV patients. Health policy and decision makers should try to provide them with a better management.

Does genetics matter for disease-related stigma? The impact of genetic attribution on stigma associated with rheumatic heart disease in the Western Cape, South Africa

IntroductionA common concern in African genomic research is that such work may cause, or increase, stigma associated with particular diseases or population groups. While there is some evidence suggesting that genetic attribution of disease might impact stigma, there exists no evidence for the situation in African populations. With increasing genomic research in African populations, questions about the effect of genetic attribution on disease-related stigma are salient for stakeholders involved in implementation and regulation. To understand better the relationship between stigma and genetic attribution, we interviewed people with Rheumatic Heart Disease (RHD) in the Western Cape of South Africa. MethodWe conducted 11 focus group discussions with RHD patients of mixed-ancestry in the Western Cape, exploring the impact of genetic attribution on stigma. Participants had previously consented to participate in genomic research, attending information sessions on genetics. We explored the impact of genetic attribution by introducing both genetic and environmental causes to RHD and by specifically probing how these various causes would likely impact selected features of disease stigma. ResultsParticipants reported varying experiences of stigma relating to RHD, such as labelling, social exclusion and discrimination at the workplace. They had some understanding of genetics, either in general, or in relation to their illness. Participants’ understanding depicted multiple causal models to explain RHD including genetic, environmental and bacterial causation. Overall, participants did not make a connection between genetics as a cause of RHD and their experiences of stigma. DiscussionIn this study we found no support for the concern that genetic attribution of RHD, understood by participants in our study as a genetic predisposition to developing the disease, would impact stigma associated with it. Our findings provide some reassurance that genomic research may be unlikely to cause an increase in disease-related stigma in the South African context.

Addressing Disease-Related Stigma During Infectious Disease Outbreaks.

Outbreaks of emerging infectious disease are a constant threat. In the last 10 years, there have been outbreaks of 2009 influenza A (H1N1), Ebola virus disease, and Zika virus. Stigma associated with infectious disease can be a barrier to adopting healthy behaviors, leading to more severe health problems, ongoing disease transmission, and difficulty controlling infectious disease outbreaks. Much has been learned about infectious disease and stigma in the context of nearly 4 decades of the human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome pandemic. In this paper, we define stigma, discuss its relevance to infectious disease outbreaks, including how individuals and communities can be affected. Adapting lessons learned from the rich literature on HIV-related stigma, we propose a strategy for reducing stigma during infectious disease outbreaks such as Ebola virus disease and Zika virus. The implementation of brief, practical strategies such as the ones proposed here might help reduce stigma and facilitate more effective control of emerging infectious diseases.

Ebola virus disease-related stigma among survivors declined in Liberia over an 18-month, post-outbreak period: An observational cohort study.

BackgroundWhile qualitative assessments of Ebola virus disease (EVD)-related stigma have been undertaken among survivors and the general public, quantitative tools and assessment targeting survivors have been lacking.Methods and findingsBeginning in June 2015, EVD survivors from seven Liberian counties, where most of the country’s EVD cases occurred, were eligible to enroll in a longitudinal cohort. Seven stigma questions were adapted from the People Living with HIV Stigma Index and asked to EVD survivors over the age of 12 at initial visit (median 358 days post-EVD) and 18 months later. Primary outcome was a 7-item EVD-related stigma index. Explanatory variables included age, gender, educational level, pregnancy status, post-EVD hospitalization, referred to medical care and EVD source. Proportional odds logistic regression models and generalized linear mixed-effects models were used to assess stigma at initial visit and over time. The stigma questions were administered to 859 EVD survivors at initial visit and 741 (86%) survivors at follow-up. While 63% of survivors reported any stigma at initial visit, only 5% reported any stigma at follow-up. Over the 18-month period, there was a significant decrease in stigma among EVD survivors (Adjusted Odds Ratio [AOR], 0.02; 95% Confidence Interval [CI], 0.01–0.04). At initial visit, having primary, junior high or vocational education, and being referred to medical care was associated with higher odds of stigma (educational level: AOR, 1.82; 95%CI, 1.27–2.62; referred: AOR, 1.50; 95%CI, 1.16–1.94). Compared to ages of 20–29, those who had ages of 12–19 or 50+ experienced lower odds of stigma (12–19: AOR, 0.32; 95%CI, 0.21–0.48; 50+: AOR, 0.58 95%CI, 0.37–0.91).ConclusionsOur data suggest that EVD-related stigma was much lower more than a year after active Ebola transmission ended in Liberia. Among survivors who screened negative for stigma, additional probing may be considered based on age, education, and referral to care.

Accessibility and Acceptability of Infectious Disease Interventions Among Migrants in the EU/EEA: A CERQual Systematic Review.

In the EU/EEA, subgroups of international migrants have an increased prevalence of certain infectious diseases. The objective of this study was to examine migrants’ acceptability, value placed on outcomes, and accessibility of infectious disease interventions. We conducted a systematic review of qualitative reviews adhering to the PRISMA reporting guidelines. We searched MEDLINE, EMBASE, CINAHL, DARE, and CDSR, and assessed review quality using AMSTAR. We conducted a framework analysis based on the Health Beliefs Model, which was used to organize our preliminary findings with respect to the beliefs that underlie preventive health behavior, including knowledge of risk factors, perceived susceptibility, severity and barriers, and cues to action. We assessed confidence in findings using an adapted GRADE CERQual tool. We included 11 qualitative systematic reviews from 2111 articles. In these studies, migrants report several facilitators to public health interventions. Acceptability depended on migrants’ relationship with healthcare practitioners, knowledge of the disease, and degree of disease-related stigma. Facilitators to public health interventions relevant for migrant populations may provide clues for implementation. Trust, cultural sensitivity, and communication skills also have implications for linkage to care and public health practitioner education. Recommendations from practitioners continue to play a key role in the acceptance of infectious disease interventions.

Premarriage Counseling in Type 1 Diabetes.

Type 1 diabetes is a challenging illness and needs lifelong diabetes self-care. At the same time, there is a significant stigma associated with it, especially with relation to marriage. There are concerns related to premarriage disclosure, marital relationship, ability to procreate, risk during pregnancy in women, and the risk of disease in children. In this document, we discuss the issue of disease-related stigma which may become a significant challenge for a prospective spouse and the impact of type 1 diabetes on marital relationships and procreation. We also highlight the need for premarriage counseling to ensure long-term success in achieving both individual and interpersonal well-being.

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

To explore experiences of stigma in people with inflammatory bowel disease. Diarrhoea, urgency and incontinence are common symptoms in inflammatory bowel disease. Social rules stipulate full control of bodily functions in adulthood: poor control may lead to stigmatization, affecting patients' adjustment to disease. Disease-related stigma is associated with poorer clinical outcomes, but qualitative evidence is minimal. An interpretive (hermeneutic) phenomenological study of the lived experience of stigma in inflammatory bowel disease. Forty community-dwelling adults with a self-reported diagnosis of inflammatory bowel disease were recruited purposively. Participants reported feeling stigmatized or not and experiencing faecal incontinence or not. Unstructured interviews took place in participants' homes in the United Kingdom (September 2012 - May 2013). Data were analysed using Diekelmann's interpretive method. Three constitutive patterns-Being in and out of control, Relationships and social Support and Mastery and mediation-reveal the experience of disease-related stigma, occurring regardless of continence status and because of name and type of disease. Stigma recedes when mastery over disease is achieved through development of resilience-influenced by humour, perspective, mental well-being and upbringing (childhood socialization about bodily functions). People travel in and out of stigma, dependent on social relationships with others including clinicians and tend to feel less stigmatized over time. Emotional control, social support and mastery over disease are key to stigma reduction. By identifying less resilient patients, clinicians can offer appropriate support, accelerating the patient's path towards disease acceptance and stigma reduction.

Utilization of traditional, complementary and alternative medicine and mental health among patients with chronic diseases in primary health care settings in Cambodia

BackgroundCoping with chronic illnesses often involves major lifestyle changes that may lead to poor mental health. Furthermore, in order to treat the chronic conditions, many sufferers in Asia turn to traditional, complementary and alternative medicines (TCAM). This study explores prevalence of TCAM use and factors associated with anxiety and depressive symptoms among patients with chronic diseases in Cambodia.MethodsIn 2015, this cross-sectional study was conducted with outpatients receiving treatment and care for chronic diseases in two urban and two rural primary health centers. Every eligible patient was randomly selected at the health centers using a systematic sampling procedure. Symptoms of anxiety and depression were assessed by using the Hospital Anxiety and Depression Scale (HADS). Multivariate logistic regression models were constructed to explore factors associated with anxiety and depressive symptoms.ResultsThe study participants included 1528 patients, of whom 77.2% were female, with a mean age of 46.5 years (SD = 15.3). After adjustment, patients with depressive symptoms remained significantly more likely to be in the age groups between 41 and 60 years old and to be married, separated/divorced or widowed compared to those without depressive symptoms. Regarding the use of TCAM, patients with depressive symptoms remained significantly more likely to report using an herbalist, practicing visualization and praying for own health, but less likely to report using vitamins or supplements in the past 12 months. For quality of life, patients with depressive symptoms remained significantly less likely to agree that they had enough energy for their everyday life and had enough money to meet their daily needs. Similar risk factors were also found to be significantly associated with anxiety symptoms.ConclusionsCambodian patients with chronic diseases who experienced symptoms of anxiety or depression were more likely to report reduced quality of life, greater chronic disease-related stigma and more TCAM use. Given the potential interaction of TCAM, mental health and other chronic conditions, a history of TCAM use and mental health should be elicited in clinical practices in primary health care settings, particularly in developing countries.

Perceived stigma and depression in initially diagnosed pulmonary tuberculosis patients.

To investigate the status of tuberculosis stigma and depression among tuberculosis patients, to examine the relationship between demographics and tuberculosis stigma and depression among tuberculosis patients, and to identify the predictors of depression among tuberculosis patients. After the diagnosis of tuberculosis, patients suffer from disease symptoms and disease-related stigma. Depression is also a major concern in tuberculosis patients. A cross-sectional design was used in this study. A total of 84 subjects, obtained through convenience sampling, enrolled in this study, which was conducted from 1 March 2013-30 December 2014. Data were collected using a structured questionnaire with a demographic component, the Tuberculosis-related Stigma Scale, and the Beck Depression Inventory-II. Data were analysed, using spss Version 20. Independent t tests, Pearson's correlation coefficient tests and analyses of variance were used for analysis of patient demographic characteristics, disease characteristics, and the correlation between stigma and depression. Multiple linear regression was used for determining the predictors of depression. The results showed that not disclosing one's illness to others was associated with tuberculosis stigma and depression. Multiple linear regression analysis indicated that patient-perceived tuberculosis stigma and body mass index accounted for 34% of the variation in depression. These results can serve as a reference for clinical healthcare providers to understand perceived stigma and depression in initially diagnosed tuberculosis patients. An intervention to reduce patient tuberculosis stigma, such as improving community healthcare education or offering mental health outreach, has great potential to lower the level of depression among patients with tuberculosis.

Living in the epilepsy treatment gap in rural South India: A focused ethnography of women and problems associated with stigma

ABSTRACTIn India, women with epilepsy face unique challenges. A focused ethnography of six women within the epilepsy treatment gap was conducted in rural South India. Women were asked to describe their day-to-day lives. Data were collected through open-ended, semistructured interview questions, participant observation, and field notes. Thematic analysis was done. The disease-related stigma contributed to the women's physical, psychological, and emotional struggles; the women and their family members made every effort to conceal the disease. Educational interventions to create awareness could help women seek effective treatments for their seizures, thereby reducing the stigma and improving the quality of their lives.

Psychological impact on caregivers of HIV-infected children in Udupi district, Karnataka

ABSTRACTCaregivers of children living with HIV/AIDS (CLWHA) face unique challenges due to disease-related stigma and discrimination, isolation from society, financial constraints, grief and mortality of loved one. A descriptive cross-sectional study was conducted at Udupi ART centre to assess the caregiver burden, psychological distress and their associated factors among the caregivers of CLWHA in Udupi District. The convenience sampling technique was used to collect the data from 171 caregivers and analysed with the help of SPSS version 15.0. Majority of caregivers were female (64.9%) with mean age of 38.1 ± 9.6 years. About 64.3% caregivers were HIV-positive and 63.2% were biological parents of CLWHA. Mild-to-severe caregiver burden on Zarit Burden Inventory (ZBI) was reported among 84.8% of caregivers, and mild-to-severe psychological distress on General Health Questionnaire (GHQ-12) was reported among 49.7% caregivers. Relationship with child was found to be a significant predictor of caregiver burden as compared to other relatives/foster (P < 0.001). Relationship with child (P 0.004), Alcohol use (P 0.008) and Schooling of children (P 0.049) were reported as significant predictors of psychological distress. Study concludes that caregiver burden and psychological distress were high among caregivers of CLWHA. Psychological problems of caregivers need to be addressed and integrated along with the clinical care of HIV-infected children at ART centres.

Dual Perspectives On Stigma: Reports of Experienced and Enacted Stigma by Those Affected and Unaffected by Podoconiosis.

Background: Disease-related stigma is a public health concern steadily gaining global attention. Evidence consistently shows that an individual’s attribution of disease cause can prompt or justify interpersonal stigma. However, few studies have explored causal beliefs about inherited disease and their influence on stigmatising behaviours in low and middle income countries.Design and methods: The study was conducted in 2013, in six communities in Wolaita zone, Southern Ethiopia. A total of 1800 respondents took part in the study, 600 were affected by an inherited disease and 1200 were unaffected neighbours. Two versions of the interviewer-administered survey were created, with measures assessed in parallel on experienced stigma for the affected and enacted stigma for unaffected respondents.Results: Mean levels of enacted stigma reported by unaffected respondents were slightly lower (2.0, SD=0.7) than experienced stigma reported by affected respondents [2.2 (standard deviation=1.1)]. Beliefs that podoconiosis was hereditary were significantly and positively associated with levels of enacted stigma reported by unaffected respondents and experienced stigma reported by affected respondents (P<0.001). There was no association of reported levels of stigma experienced by affected respondents with levels of enacted stigma reported by the neighbouring unaffected respondents. Males consistently reported significantly lower levels of experienced and enacted stigma than females, P<0.0001.Conclusions: If stigma reduction interventions are to be successful, culturally tailored, gender inclusive and innovative health education programs are required, directed at the general community as well as individuals affected by inherited diseases.Significance for public healthDisease-related stigma is a public health concern steadily gaining global attention. In this report, we evaluated dual perspectives of stigma, that is, we compared reports of stigma experienced by families affected by a heritable neglected tropical disease with reports of enacted stigma among neighbouring families unaffected by the disease. We found that unaffected neighbours reported enacting less stigma than affected respondents reported experiencing. Levels of enacted and experienced stigma also were influenced by community members’ perceptions of the causes of disease. Enacted and experienced stigma levels also varied by gender (males reported less of each) across sites. Taken together, these findings highlight the need for stigma reduction strategies to involve both affected and unaffected groups if interventions are to be effective. These efforts also should address community members’ baseline explanations of what causes heritable health conditions while considering gender and community context.

Psychometric Field Study of Hereditary Angioedema Quality of Life Questionnaire for Adults: HAE-QoL

Hereditary angioedema due to C1 inhibitor deficiency (C1-INH-HAE) may affect health-related quality of life (HRQoL). A specific HRQoL questionnaire for adult patients with C1-INH-HAE, the HAE-QoL, has recently been developed in Spain. The objective of this study was to perform a cross-cultural validation and psychometric study of the HAE-QoL in an international setting. Cross-cultural adaptation of the Spanish HAE-QoL draft version and an international rating phase with experts were performed. The resultant version of the HAE-QoL, a clinical questionnaire, and Short Form 36-item Health Survey Version 2.0 (SF-36v2) were pilot tested internationally. Item reduction was based on both descriptive and exploratory factor analysis. Psychometric properties were assessed. Cross-cultural adaptation of the HAE-QoL was performed in 18 countries. The draft version of the HAE-QoL was pilot tested in 332 patients, and accurate data were obtained from 290 patients from 11 countries. The reduction process resulted in a new version with 25 items and 7 dimensions (treatment difficulties, physical functioning and health, disease-related stigma, emotional role and social functioning, concern about offspring, perceived control over illness, and mental health). Strong psychometric properties were observed (Cronbach's α 0.92; test-retest reliability 0.87). Convergent validity showed mild to moderate correlations with SF-36v2 physical and mental component summaries (0.45 and 0.64, respectively) and with SF-36v2 dimensions (P < .004). HAE-QoL scores discriminated significantly among severity groups (median: asymptomatic 133.5 vs severe 84.0; P < .001); between patients with and without long-term prophylaxis (median: 101 vs 90; P= .001); and between patients with and without psychiatric and/or psychological care (median: 74 vs 103; P ≤ .001). The HAE-QoL, currently available in 18 languages, showed good reliability and validity evidence.

Hepatitis-C (HCV)-Related Social Stigma; Development of a Scale

In the past two decades, there has been a substantial research on disease related stigma especially the HIV stigma. However, only a few studies address the issue of HCV related social stigma. Through this study a scale was developed to measure HCV related social stigma. The scale was developed using literature review and interview with 26 individuals divided in five different groups. The nineteen item scale developed after this activity was distributed among 221 respondents. Results indicate that the scale shows robust psychometric properties with good alpha value having a four factor solution. The results are discussed with theoretical and practical implications that how this scale will facilitate measurement of HCV related social stigma in future studies.

The Measure of Disease-Related Stigma: Construction, validation, and application across three disease contexts.

The Measure of Disease-Related Stigma: Construction, validation, and application across three disease contexts.

Applicability of the SMART Model of Transition Readiness for Sickle-Cell Disease.

This study aimed to examine the applicability of the Social-ecological Model of Adolescent and Young Adult Readiness to Transition (SMART) model for adolescents and young adults (AYA) with sickle-cell disease (SCD). 14 AYA with SCD (14-24 years old) and 10 clinical experts (6-20 years of experience) completed semi-structured interviews. AYA completed brief questionnaires. Interviews were coded for themes, which were reviewed to determine their fit within the SMART model. Overall, most themes were consistent with the model (e.g., sociodemographics/culture, neurocognition/IQ, etc.). Factors related to race/culture, pain management, health-care navigation skills, societal stigma, and lack of awareness about SCD were salient for AYA with SCD. Findings suggest the SMART model may be appropriate in SCD with the consideration of disease-related stigma. This study is a step toward developing a disease-specific model of transition readiness for SCD. Future directions include the development of a measure of transition readiness for this population.

Supplemental Material for The Measure of Disease-Related Stigma: Construction, Validation, and Application Across Three Disease Contexts

Supplemental Material for The Measure of Disease-Related Stigma: Construction, Validation, and Application Across Three Disease Contexts

How does context influence performance of community health workers in low- and middle-income countries? Evidence from the literature.

BackgroundCommunity health workers (CHWs) are increasingly recognized as an integral component of the health workforce needed to achieve public health goals in low- and middle-income countries (LMICs). Many factors intersect to influence CHW performance. A systematic review with a narrative analysis was conducted to identify contextual factors influencing performance of CHWs.MethodsWe searched six databases for quantitative, qualitative, and mixed-methods studies that included CHWs working in promotional, preventive or curative primary health care services in LMICs. We differentiated CHW performance outcome measures at two levels: CHW level and end-user level. Ninety-four studies met the inclusion criteria and were double read to extract data relevant to the context of CHW programmes. Thematic coding was conducted and evidence on five main categories of contextual factors influencing CHW performance was synthesized.ResultsFew studies had the influence of contextual factors on CHW performance as their primary research focus. Contextual factors related to community (most prominently), economy, environment, and health system policy and practice were found to influence CHW performance. Socio-cultural factors (including gender norms and values and disease related stigma), safety and security and education and knowledge level of the target group were community factors that influenced CHW performance. Existence of a CHW policy, human resource policy legislation related to CHWs and political commitment were found to be influencing factors within the health system policy context. Health system practice factors included health service functionality, human resources provisions, level of decision-making, costs of health services, and the governance and coordination structure. All contextual factors can interact to shape CHW performance and affect the performance of CHW interventions or programmes.ConclusionsResearch on CHW programmes often does not capture or explicitly discuss the context in which CHW interventions take place. This synthesis situates and discusses the influence of context on CHW and programme performance. Future health policy and systems research should better address the complexity of contextual influences on programmes. This insight can help policy makers and programme managers to develop CHW interventions that adequately address and respond to context to optimise performance.Electronic supplementary materialThe online version of this article (doi:10.1186/s12961-015-0001-3) contains supplementary material, which is available to authorized users.

MBCT for Patients with Respiratory Conditions Who Experience Anxiety and Depression: A Qualitative Study

Patients with asthma and chronic obstructive pulmonary disease (COPD) often experience anxiety and depression in relation to their respiratory condition. Anxiety and depression in this population are associated with decreased activity. The aim of this phenomenological study was to carry out in-depth qualitative interviews with a purposive sample of patients with asthma and COPD taking part in an 8-week mindfulness-based cognitive therapy (MBCT) course to explore their experiences of MBCT. In particular, we were interested in how the mindfulness approach helped them, or not, and their awareness of any meaningful changes in relation to their breathlessness, activity levels, anxiety or low mood. Twenty-two patients were recruited from primary and secondary care to receive an 8-week course in MBCT. Two groups of MBCT were taught by qualified MBCT teachers in a community setting. Of the 22 patients who attended the MBCT course, 12 patients were purposively sampled to take part in an in-depth qualitative interview 2 months after completing the MBCT course. Interviews were digitally recorded and transcribed verbatim. Analysis was thematic. The themes that emerged included greater acceptance and reduced sense of disease-related stigma; noticing subtle bodily sensations to detect early warning signs of breathlessness; linking pulmonary rehabilitation advice with mindfulness; developing a new relationship to breathing, activity and associated thoughts; having a greater sense of control; being creative around limitations and removing psychological barriers to being more active. Findings offer, for the first time, qualitative evidence on how MBCT benefits patients with asthma and COPD who experience anxiety and depression. These data provide a useful adjunct to existing quantitative evidence in this area.