Jayashree Ramakrishna

Health-Related Stigma: Rethinking Concepts and Interventions

Abstract As a feature of many chronic health problems, stigma contributes to a hidden burden of illness. Health-related stigma is typically characterized by social disqualification of individuals and populations who are identified with particular health problems. Another aspect is characterized by social disqualification targeting other features of a persons identity—such as ethnicity, sexual preferences or socio-economic status—which through limited access to services and other social disadvantages result in adverse effects on health. Health professionals therefore have substantial interests in recognizing and mitigating the impact of stigma as both a feature and a cause of many health problems. Rendering historical concepts of stigma as a discrediting physical attribute obsolete, two generations of Goffman-inspired sociological studies have redefined stigma as a socially discrediting situation of individuals. Based on that formulation and to specify health research interests, a working definition of health-related stigma is proposed. It emphasizes the particular features of target health problems and the role of particular social, cultural and economic settings in developing countries. As a practical matter, it relates to various strategies for intervention, which may focus on controlling or treating target health problems with informed health and social policies, countering the disposition of perpetrators to stigmatize, and supporting those who are stigmatized to limit their vulnerability and strengthen their resilience. Our suggestions for health studies of stigma highlight needs for disease- and culture-specific research that serves the interests of international health.

HIV-related stigma: Adapting a theoretical framework for use in India

Stigma complicates the treatment of HIV worldwide. We examined whether a multi-component framework, initially consisting of enacted, felt normative, and internalized forms of individual stigma experiences, could be used to understand HIV-related stigma in Southern India. In Study 1, qualitative interviews with a convenience sample of 16 people living with HIV revealed instances of all three types of stigma. Experiences of discrimination (enacted stigma) were reported relatively infrequently. Rather, perceptions of high levels of stigma (felt normative stigma) motivated people to avoid disclosing their HIV status. These perceptions often were shaped by stories of discrimination against other HIV-infected individuals, which we adapted as an additional component of our framework (vicarious stigma). Participants also varied in their acceptance of HIV stigma as legitimate (internalized stigma). In Study 2, newly developed measures of the stigma components were administered in a survey to 229 people living with HIV. Findings suggested that enacted and vicarious stigma influenced felt normative stigma; that enacted, felt normative, and internalized stigma were associated with higher levels of depression; and that the associations of depression with felt normative and internalized forms of stigma were mediated by the use of coping strategies designed to avoid disclosure of ones HIV serostatus.

Stigma interventions and research for international health

The stigma of many diseases and disorders prevalent in the world today is cause for increasing public health concern raising the question of whether new research is necessary before enlightened health policies can be implemented. Because stigma is a very broad topic it is important to acknowledge distinctive features of healthrelated stigma and the social burden of illness. We have formulated a definition of health-related stigma: a social process or related personal experience characterised by exclusion rejection blame or devaluation that results from experience or reasonable anticipation of an adverse social judgment about a person or group identified with a particular health problem. The judgment is medically unwarranted with respect to the health problem itself just as stigma targeting other aspects of group identity (such as race or sexual orientation) is also unwarranted and may adversely affect public health policy and individual health status. (excerpt)

Traditional community resources for mental health: a report of temple healing from india

The use of complementary medicine and the traditional medicine of other cultures has been increasing in Europe and North America.3 Although less well documented, the use of complementary medicines and consultations with traditional healers is widely acknowledged in low income countries, such as India. Here too the limited availability of health services motivates the use of a wide range of alternative systems of care for various ailments, including mental illnesses4 In addition to herbal and other traditional medicines, healers and healing temples are seen as providing curative and restorative benefits. In India many people troubled by emotional distress or more serious mental illnesses go to Hindu, Muslim, Christian, and other religious centres. The healing power identified with these institutions may reside in the site itself, rather than in the religious leader or any medicines provided at the site. Studies of these healing sites have focused primarily on ethnographic accounts.5 Research has not systematically examined the psychiatric status of the people coming for help at these religious centres or the clinical impact of healing. It has focused primarily on possession and non-psychotic disorders, rather than serious psychotic illnesses. Yet people with serious psychotic illnesses do visit such healing temples in India,6 and understanding the role of these institutions may help with planning for community mental health services in underserved rural areas. We describe here the work of a Hindu healing temple in South India known as a source of help for people with serious mental disorders. We also tried to measure the clinical effectiveness of religious healing at this site. ### Summary points Traditional community resources, including temple healing practices, are widely used in managing mental illnesses in India This research shows that a brief stay at one healing temple in South India improved objective measures of clinical psychopathology In …

Stigma Is Associated with Delays in Seeking Care among HIV-Infected People in India

Background: Stigma shapes the lives of people living with HIV and may affect their willingness to seek medical care. But treatment delays can compromise health and increase the risk of transmission to others. Purpose: To examine whether the 4 stigma manifestations—enacted (discrimination), vicarious (hearing stories of discrimination), felt normative (perceptions of stigma’s prevalence), and internalized (personal endorsement of stigma beliefs)—were linked with delays in seeking care among HIV-infected people in India. Methods: A cross-sectional survey was conducted with 961 HIV-positive men and women in Mumbai and Bengaluru. Results: Enacted and internalized stigmas were correlated with delays in seeking care after testing HIV positive. Depression symptoms mediated the associations of enacted and internalized stigmas with care-seeking delays, whereas efforts to avoiding disclosing HIV status mediated only the association between internalized stigma and care-seeking delays. Conclusion: It is vital to develop stigma reduction interventions to ensure timely receipt of care.

Prevalence and drivers of HIV stigma among health providers in urban India: implications for interventions

HIV stigma inflicts hardship and suffering on people living with HIV (PLHIV) and interferes with both prevention and treatment efforts. Health professionals are often named by PLHIV as an important source of stigma. This study was designed to examine rates and drivers of stigma and discrimination among doctors, nurses and ward staff in different urban healthcare settings in high HIV prevalence states in India.

Blame, Symbolic Stigma and HIV Misconceptions are Associated with Support for Coercive Measures in Urban India

This study was designed to examine the prevalence of stigma and its underlying factors in two large Indian cities. Cross-sectional interview data were collected from 1,076 non-HIV patients in multiple healthcare settings in Mumbai and Bengaluru, India. The vast majority of participants supported mandatory testing for marginalized groups and coercive family policies for PLHA, stating that they “deserved” their infections and “didn’t care” about infecting others. Most participants did not want to be treated at the same clinic or use the same utensils as PLHA and transmission misconceptions were common. Multiple linear regression showed that blame, transmission misconceptions, symbolic stigma and negative feelings toward PLHA were significantly associated with both stigma and discrimination. The results indicate an urgent need for continued stigma reduction efforts to reduce the suffering of PLHA and barriers to prevention and treatment. Given the high levels of blame and endorsement of coercive policies, it is crucial that such programs are shaped within a human rights framework.

Birth rights and rituals in rural South India: Care seeking in the intrapartum period

Maternal morbidity and mortality are high in the Indian context, but the majority of maternal deaths could be avoided by prompt and effective access to intrapartum care (WHO, 1999). Understanding the care seeking responses to intrapartum morbidities is crucial if maternal health is to be effectively improved, and maternal mortality reduced. This paper presents the results of a prospective study of 388 women followed through delivery and traditional postpartum in rural Karnataka in southern India. In this setting, few women use the existing health facilities and most deliveries occur at home. The analysis uses quantitative data, collected via questionnaires administered to women both during pregnancy and immediately after delivery. By virtue of its prospective design, the study gives a unique insight into intentions for intrapartum care during pregnancy as well as events following morbidities during labour. Routine care in the intrapartum period, both within institutions and at home, and impediments to appropriate care are also examined. The study was designed to collect information about health seeking decisions made by women and their families as pregnancies unfolded, rather than trying to capture womens experience from a retrospective instrument. The data set is therefore a rich source of quantitative information, which incorporates details of event sequences and health service utilization not previously collected in a Safe Motherhood study. Additional qualitative information was also available from concurrent in-depth interviews with pregnant women, their families, health care providers and other key informants in the area. The level of unplanned institutional care seeking during the intrapartum period within the study area was very high, increasing from 11% planning deliveries at a facility to an eventual 35% actually delivering in hospitals. In addition there was a significant move away from planned deliveries with the auxiliary nurse midwive (ANM), to births with a lay attendant or dai. The proportion of women who planned for an ANM to assist was 49%, as compared with the actual occurrence, which was less than half of this proportion. Perceived quality of care was found to be an important factor in health seeking behaviour, as was wealth, caste, education and experience of previous problems in pregnancy. Actual care given by a range of practitioners was found to contain both beneficial and undesirable elements. As a response to serious morbidities experienced within the study period, many women were able to seek care although sometimes after a long delay. Those women who experienced inadequate progression of labour pains were most likely to proceed unexpectedly to a hospital delivery.

Stigmas, symptom severity and perceived social support predict quality of life for PLHIV in urban Indian context

BackgroundMultiple variables have been studied in relation to health-related quality of life (HRQoL), but research has not integrated the contributions of different variables in a single model that allows to compare them. This study, carried out with people living with HIV/AIDS in India, sought to develop a prediction model considering various predictors previously found to be related to HRQoL, namely sociodemographic factors, HIV symptoms, social support, stigmas and avoidant coping.MethodsA sample of 961 HIV-positive persons from Bengaluru and Mumbai participated in this cross-sectional study, completing a sociodemographic questionnaire along with HRQoL, HIV symptoms, disclosure expectations, disclosure avoidance, social support and internalized, felt, vicarious and enacted stigma scales. Bivariate associations were obtained (correlations, ANOVAs and t tests) and a multiple regression analysis was performed.ResultsResults show that, when all variables are considered together, being married, widowed or deserted, symptom intensity, internalized stigma, disclosure avoidance and enacted stigma contribute negatively to predict HRQoL. On the other hand, being employed, good disclosure expectations and good social support contribute positively to predict HRQoL. Almost half of the variance in HRQoL was explained by this model.ConclusionsInterventions seeking to increase HRQoL in people living with HIV/AIDS in India would benefit from addressing these aspects.