Health-related stigma

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KIT Dossier Health-related stigma

Last update: Monday 27 May 2013

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2013

  • A global HIV stigma reduction framework adapted and implemented in five settings in India
    To support India's National AIDS Control Programme (NACP), ICRW with the United Nations Development Programme (UNDP) has adapted an existing global HIV stigma reduction framework for the Indian context and pilot tested the frameowrk in five settings in India.  This report synthesizes the lessons learned from the process, including the feasibility and relevance of the framework for use by the NACP and other global stakeholders in informing stigma reduction interventions and measurement.
    ICRW, STRIVE, UNDP | 2013
  • Reducing stigma to improve engagement in HIV care among men who have sex with men
    Men who have sex with men (MSM) are particularly vulnerable to HIV as well as to other physical and psychological health concerns. MSM experience multi-layered stigma and discrimination as a result of their perceived or real HIV status and their same-sex behavior. Because of social and cultural non-acceptance of their sexuality and fear of being ridiculed, MSM experience internalized stigma, which manifests as guilt, depression, lack of confidence and unwillingness to discuss their sexual lives. This not only influences their mental health but also, combined with enacted or perceived stigma by health care providers, can impede the utilization of health services by MSM. Through a process of research and joint discussion of findings, this project created a foundation for combating stigma at both the individual and institutional levels. It was part of a larger effort to adapt and pilot test a global stigma reduction framework to the Indian context.
    The Humsafar Trust
    ICRW | 2013
  • Reducing HIV-related stigma among female sex workers
    HIV-positive sex workers are a highly marginalized group in India because of their HIV status and because their work is considered immoral and illegal. As a result they experience intersecting stigmas that impede their health and livelihood options. Using a community-based participatory approach, this project aimed to improve the quality of life of HIV-positive female sex workers (FSWs) by addressing the stigma and discrimination they face. The initiative was conducted in Bagalkot and Belgaum districts in north Karnataka and was part of a larger effort to adapt and pilot test a global stigma reduction framework to the Indian context.
    Karnataka Health Promotion Trust (KHPT)
    ICRW | 2013
  • Longitudinal study of rural health workforce in five counties in China: research design and baseline description
    Xu H., Zhang W., Zhang X. et al.
    The village doctors have served rural residents for many decades in China, and their role in rural health system has been highly praised in the world; unfortunately, less attention has been paid to the health workforce during the ambitious healthcare reform in recent years. Therefore, we conducted a longitudinal study to explore the current situation and track the future evolution of the rural healthcare workforce. Village doctors in rural China are facing critical challenges, including aging, gender imbalance, low education, and a lack of social protection. This study may be beneficial for making better policies for the development of the health workforce and China's healthcare reform.
    Human Resources for Health | May 2013
  • The role of HIV-related stigma in utilization of skilled childbirth services in rural Kenya: a prospective mixed-methods study
    Turan J., Hatcher A., Medema-Wijnveen J. et al.
    The Maternity in Migori and AIDS Stigma Study (MAMAS Study) is a prospective mixed-methods investigation conducted in a high HIV prevalence area in rural Kenya, in which they examined the role of women's perceptions of HIV-related stigma during pregnancy in their subsequent utilization of maternity services. Findings of this study point to the urgent need for interventions to reduce HIV-related stigma, not only for improving quality of life among persons living with HIV, but also for better health outcomes among all childbearing women and their families.
    PLOS Medicine | 2013
  • Perceived discrimination, social support, and perceived stress among people living with HIV/AIDS in China
    Su X., Lau J., Mak W. et al.
    This study surveyed PLWH recruited from multiple sources in two cities in China. The results highlight the importance to reduce discrimination toward PLWH and the difficulty to alleviate its negative consequences. It is warranted to improve mental health among PLWH in China and it is still important to foster social support among PLWH as it has direct effects on perceived stress.
    AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV | 2013

  • HIV/AIDS-related stigma felt by people living with HIV from Buea, Cameroon
    Jacobi C., Atanga P., Bin L. et al.
    This study measured the HIV/AIDS-related stigma felt by PLWHIV in Cameroon using “The people living with HIV stigma index” questionnaire. In this setting the major problems faced by the PLWHIV with regard to stigmatization and discrimination were gossiping and verbal insults, which was felt by about half of the interviewees. Equally important was internal stigma, half of the PLWHIV felt ashamed and guilty to be HIV infected. This is the first report of this kind in Cameroon.
    AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV | 2013
  • Perception of epilepsy among public workers: Perspectives from a developing country
    Ekenze O., Ndukuba A.
    Health-care workers have better perceptions of epilepsy, but stigma against PWE is still prevalent. Perception of epilepsy and attitudes towards PWE may improve with public enlightenment programs.
    Epilepsy & Behaviour | 2013

2012

  • Quality of life, health-related stigma, and the social context: longitudinal analyses of PLWHA in Uganda and a literature review
    Takada S.
    The dissertation examines the experience of living with stigmatized health conditions in the social context. The first paper examines the dynamic, bi-directional relationship between social support and HIV-related stigma. The second paper examines the trajectory and determinants of health-related quality of life of PLWHA initiating antiretroviral therapy. The third paper is an interdisciplinary review of health-related stigma.

    Harvard University's DASH repository | 2012

  • Mass social contact interventions and their effect on mental health related stigma and intended discrimination
    Evans-Lacko S., London J., Japhet S. et al.
    Stigma and discrimination associated with mental health problems is an important public health issue, and interventions aimed at reducing exposure to stigma and discrimination can improve the lives of people with mental health problems. Social contact has long been considered to be one of the most effective strategies for improving inter-group relations. This study assessed the impact of a population level social contact intervention among people with and without mental health problems. Findings emphasise the importance of facilitating conditions to promote positive social contact between individuals and also suggest that social contact interventions can work on a mass level. Future research should investigate this type of large scale intervention among broader and more representative populations.
    BMC Public Health | 2012

  • How perceptions of HIV-related stigma affect decision-making regarding childbirth in rural Kenya
    Medema-Wijnveen J., Onono M., Bukusi E. et al.
    In this sample of pregnant women in rural Kenya, those who anticipated HIV-related stigma were less likely to have positive attitudes towards facility-based childbirth. Furthermore, negative attitudes about facility-based childbirth were associated with the intention to deliver outside a health facility. HIV-related stigma reduction efforts might result in more positive attitudes towards facility-based childbirth, and thereby lead to an increased level of skilled birth attendance, and reductions in maternal and infant mortality
    PLOS One | 2012

  • Measuring HIV stigma and discrimination
    Stangl A.; Brady, L.; Fritz K.
    This brief is designed to guide researchers in the study of HIV-related stigma and discrimination, either as the main focus of research or as an element within related studies.
    International Center for Research on Women | 2012

  • Population-based study of epilepsy in Cambodia associated factors, measures of impact, stigma, quality of life, knowledge-attitude-practice, and treatment gap
    Bhalla D., Chea K., Hun C. et al.
    Factors in pre- and perinatal period were found to be most crucial for epilepsy risk in Cambodia which inturn provides major prevention opportunities. Mean stigma was mainly related to treatment efficacy. A global action plan for treatment, stigma reduction and improvement of QOL should be set-up in this country.
    PLOS One | 2012

  • The role of HIV-related stigma in utilization of skilled childbirth services in rural Kenya: a prospective mixed-methods study
    Turan J., Hatcher A., Medema-Wijnveen J. et al.
    The Maternity in Migori and AIDS Stigma Study is a prospective mixed-methods investigation conducted in a high HIV prevalence area in rural Kenya. The role of women's perceptions of HIV-related stigma during pregnancy in their subsequent utilization of maternity services is examined.
    Findings point to the urgent need for interventions to reduce HIV-related stigma, not only for improving quality of life among persons living with HIV, but also for better health outcomes among all childbearing women and their families.
    PLoS Medicine | 2012
  • Caring for caregivers of people living with HIV in the family: a response to the HIV pandemic from two urban slum communities in Pune, India
    Kohli R., Purohit V., Karve .L. et al.
    The study explored the perceptions and norms regarding care being provided by family caregivers of PLHIVs in India. Gender related stigma and discrimination existed irrespective of women being the primary family caregivers. The support from marital families indicates a need to explore care and support issues at natal and marital homes of the women living with HIV respectively. Home based care training and respite care for the caregivers is recommended. Gender sensitive interventions addressing gender inequity and HIV related stigma should be modeled while designing interventions for PLHIVs and their family caregivers.
    PLoSOne | 2012
  • Shadow on my heart: a culturally grounded concept of HIV stigma among Chinese injection drug users
    Li X., Wang H., He G. et al.
    Although stigma is a significant barrier to HIV prevention and treatment globally, the culture specific psychosocial processes through which HIV-infected Chinese experience stigma have not been described. This study used grounded theory to explore the social and psychological processes of HIV-related stigma experienced by Chinese injection drug users and proposed a culture-specific concept of stigma.
    J Assoc Nurses AIDS Care | 2012
  • The development of a lay health worker delivered collaborative community based intervention for people with schizophrenia in India
    Balaji M., Chatterjee S., Koschorke M. et al.
    This study aimed to develop a lay health worker delivered community based intervention in three sites in India. The intervention comprised five components (psycho-education; adherence management; rehabilitation; referral to community agencies; and health promotion) to be delivered by trained lay health workers supervised by specialists. The intervention underwent a number of changes as a result of formative and pilot work. While all the components were acceptable and most were feasible, experiences of stigma and discrimination were inadequately addressed.
    BMC Health Services | 2012
     
  • Development and validation of the Kilifi Stigma Scale for Epilepsy in Kenya
    Mbuba C., Abubakar A., Odermatt P. et al.
    The aim of this study was to develop and validate a tool to measure perceived stigma among people with epilepsy in Kilifi, Kenya. The authors reviewed existing scales that measured stigma, particularly of epilepsy. They  conducted a qualitative study to determine salient concerns related to stigma in Kilifi. The conclusion of the article is that the Kilifi Stigma Scale for Epilepsy is a culturally appropriate measure of stigma with strong psychometric properties.
    Epilepsy & Behaviour | 2012
     
  • Factors associated with pregnant women's anticipations and experiences of HIV-related stigma in rural Kenya
    Cuca Y., Onono M., Bukusi E. et al.
    Pregnant women who fear or experience HIV-related stigma may not get care for their own health or medications to reduce perinatal transmission of HIV. This study examined factors associated with anticipating and experiencing HIV-related stigma among pregnant women attending antenatal care clinics in rural Kenya. Over half of the HIV-positive women interviewed postpartum reported having experienced stigma, much of which was self-stigma. Women experiencing minor depression, and those whose family knew of their HIV status had significantly greater adjusted odds of experiencing stigma. Lack of women's empowerment, as well as depression, may be important risk factors for HIV-related stigma and discrimination.
    AIDS CARE | 2012 | pp. 1173-1180
  • Stigma and discrimination against people living with HIV by healthcare providers, Southwest Ethiopia
    Feyiss G., Abebe L., Girma E. et al.
    This study was conducted to explore stigma and discrimination against PLHIV amongst healthcare providers in Jimma zone, Southwest Ethiopia.
    BMC Public Health | 2012
  • Coping with HIV related stigma and well-being
    Sanjua´n P., Molero F., Fuster M. et al.
    The goal of this study was to analyze the relationships to be found among stigma perception, active and avoidant coping strategies, and subjective and psychological well-being in a sample of 133 people with HIV. The results showed that stigma perception and avoidant coping strategies (venting, self-blame, denial, behavioural disengagement and substance use) were positively associated, whereas, both stigma perception and avoidant coping were negatively associated with different measures of well-being (affect balance, self-acceptance and environmental mastery).
    Journal of Happiness Studies | 2012 | pp. 1-14
  • Impact of stigma, culture and law on healthcare providers after occupational exposure to HIV and hepatitis C
    Zaidi M., Griffiths R., Newson-Smith M. et al.
    This qualitative study examined the lived experience of occupational exposure to HIV or hepatitis C reported by four HCPs working in a tertiary care hospital in United Arab Emirates. Findings were based on interviews conducted as part of a larger two-year study investigating an intervention to improve the reporting and management of blood and body fluid exposures in the hospital.
    Culture, Health & Sexuality: An International Journal for Research, Intervention and Care | 2012 | pp. 379-391

  • HIV and tuberculosis: The construction and management of double stigma
    Daftary A.
    This paper examines the lived experience of TB disease and HIV from the perspective of affected individuals to analyze how they may think about their dual illness; how they understand their illness with TB in relation to HIV, and vice versa; and how they characterize their (stigmatized) experiences in the context of their perceptions and identities.
    Social Science & Medicine | 2012  | pp. 1-8
  • The ambivalence of stigma and the double-edged sword of HIV/AIDS intervention in Burkina Faso
    Gausseta Q., Overgaard Mogensena H., Yameogob W. et al.
    This article analyses the causes of HIV stigmatisation in Burkina Faso as perceived by people living with HIV/AIDS and people working in AIDS-related Community Based Organisations. The findings of the study show that moral or social stigmatisation does not in any simple way derive from fear, ignorance or inaccurate beliefs but that it is also established and continually reinforced by official campaigns addressing HIV/AIDS.
    Social Science and Medicine | 2012 | pp. 1037–1044

  • Health related quality of life among patients with Tuberculosis and HIV in Thailand
    Kittikraisak W., Kingkaew P., Teerawattananon Y. et al.
    Health utilities of tuberculosis (TB) patients may be diminished by side effects from medication, prolonged treatment duration, physical effects of the disease itself, and social stigma attached to the disease.
    PLoSOne | 2012 | pp. 8 
  • The burden of knowing: balancing benefits and barriers in HIV testing decisions. a qualitative study from Zambia
    Jürgensen M., Tuba M., Fylkesenes K. et al.
    This study draws on social stigma theory to enhance the understanding of the continuity of HIV related stigma in the presence of ART, and argues that the burden of knowing an HIV status and the related reluctance to get HIV tested can be understood both as a form of label-avoidance and as strong expressions of the still powerful embodied memories of suffering and death among non-curable AIDS patients over the last decades. Hope lies in the emerging signs of a reduction in HIV related stigma experienced by those who had been tested for HIV. Further research into innovative HIV testing service designs that do not add to the burden of knowing is needed.
    BMC Health Services Research | 2012 | pp. 11

2011

  • Interventions for stigma reduction – Part 2: Practical Applications
    Cross H., Heijnders M., Dalal A. et al.
    This paper reports the endeavors of the Working Group assigned to develop guidelines for interventions to reduce stigma. One conclusion of the group’s deliberations was that a “Stigma Intervention Matrix” could be a useful guide for cross-checking the development of situation-specific stigma interventions. The Stigma Intervention Matrix is presented in this paper.
    Disability, CBR & Inclusive Development | 2011 | pp. 62-70

  • People Living with HIV Stigma Index: Asia Pacific Regional Analysis 2011
    This report provides findings from the rollout of the People Living with HIV Stigma Index (PLHIV Stigma Index) in nine countries in Asia and the Pacific (Bangladesh, Cambodia, China, Fiji, Myanmar, Pakistan, Philippines, Sri Lanka, Thailand). It provides the first large-scale regional comparison of standardized HIV-related stigma indicators.
    UNAIDS | 2011

  • The stigma of Tuberculosis
    Christodoulou M.
    In the mid-19th century, colloquial names for tuberculosis, such as the white plague, with reference to the pallor common in patients with tuberculosis, and consumption, reflecting the atrophy of an infected body, engendered fear of the disease and those with it. This fear often led to stigmatisation; although the disease is now much better understood, fear and stigma remain and create barriers to effective management. The importance of stigma in relation to tuberculosis control has been emphasised in recent months, with non-governmental organisations, such as Via Libre in Peru, raising awareness of this issue in public health campaigns.
    The Lancet Infectious Diseases | 2011
  • Comparing HIV-related symbolic stigma in six African countries: social representations in young people's narratives
    Hubert K., Hubert E., Obyerodhyambo O.
    HIV-related symbolic stigma arises from moralistic value judgements attached to people living with HIV and has negative consequences from both public health and human rights perspectives. Relatively little is known about cross-national variation in symbolic stigma. With the purpose of informing stigma reduction efforts within and across settings, the authors compared social representations of HIV in six African countries with estimated adult HIV prevalence rates ranging from 1 to 33%.
    Social Science & Medicine | 2011
  • Dealing with HIV-Related stigma: A qualitative study of women outpatients from the Chris Hani Baragwanath Hospital
    Lekganyane R., Plessis du G.
    The purpose of this study was to explore HIV-infected women outpatients’ experiences of stigma and the coping strategies that they devised to deal with it. The elements of stigma and the coping strategies employed as uncovered in this study suggest a basis from which interventions aimed at assisting HIV-infected people to deal with stigma can be planned.
    Journal of the Association of Nurses in AIDS Care | 2011
  • Piecing it together for women and girls: the gender dimensions of HIV-related stigma
    Using evidence from the People Living with HIV Stigma Index this publication outlines the gender dimensions of HIV-related stigma in Bangladesh, Dominican Republic and Ethiopia.
    International Planned Parenthood Foundation | 2011
  • Labeling of mental disorders and stigma in young people
    Wright A., Jorma A., Mackinnona A.
    Mental disorders are common in young people, yet many do not seek help. The use of psychiatric labels to describe mental disorders is associated with effective help-seeking choices, and is promoted in community awareness initiatives designed to improve help-seeking. However these labels may also be coupled with stigmatizing beliefs and therefore inhibit help-seeking: lay mental health or non-specific labels may be less harmful. The authors examined the association between labeling of mental disorders and stigma in youth.
    Social Science & Medicine | 2011
  • Socio-economic status and HIV/AIDS stigma in Tanzania
    Amuri M., Mitchell S., Cockcroft A. et al.
    The level of HIV and AIDS stigma in Tanzania is high with independent associations with several disadvantages: poverty, less education and living in rural areas. Other vulnerable groups, such as survivors of intimate partner violence, are also more likely to have a stigmatising attitude. HIV prevention programmes should take account of stigma, especially among the disadvantaged, and take care not to increase it.
    AIDS Care | 2011
  • Stigma and HIV risk among Metis in Nepal
    Wilson E., Pant S., Comfort M., et al.
    This study was conducted to explore the social context of stigma among Metis in Nepal to better understand their risk for HIV. Fourteen in-depth interviews were conducted with Metis in Kathmandu, Nepal. We found that stigma from families leading to rural-urban migration exposed Metis to discrimination from law enforcement, employers and sexual partners, which influenced their risk for HIV.
    Culture Health and Sexuality | 2011
  • Social stigma as an epidemiological determinant for leprosy elimination in Cameroon
    Nsagha D., Bissek A., Nsagha S. et al.
    The present study was performed to investigate the role of social stigma as a determinant for leprosy elimination in a leprosy endemic region of Cameroon. The high proportion of positive attitudes among the participants and in different divisions is a positive indicator that the elimination of leprosy social stigma is progressing in the right direction.
    Journal of public health in Africa | 2011
  • Perceived stigma among patients receiving antiretroviral therapy: a prospective study in KwaZulu-Natal, South Africa.
    Peltzer K., Ramlagan S.
    The aim of this study is to examine whether internalized AIDS stigma among HIV patients one year after antiretroviral therapy initiation is associated with socio demographic characteristics, health status, social support, quality of life, and ARV adherence.
    AIDS Care | 2011
  • Social–cultural aspects of epilepsy in Kilimanjaro Region, Tanzania: Knowledge and experience among patients and carers
    Mushi D., Hunter E., Mtuy C. et al.
    Poor knowledge and strong cultural and religious beliefs characterize the experience of people with epilepsy (PWE) in this population. Epilepsy-related stigma contributes to overall disease burden and PWE face exclusion across major life domains. There is a need to educate communities and inculcate perceptions and attitudes that promote early detection of epilepsy and early care-seeking behavior.
    Epilepsy & Behavior | 2011

2010

Mental illness - stigma and discrimination in Zambia
Kapungwe, A., Cooper, S., Mwanza J. et al.
The aim of this qualitative study was to explore the presence, causes and means of addressing individual and systemic stigma and discrimination against people with mental illness in Zambia. This is to facilitate the development of tailor-made anti stigma initiatives that are culturally sensitive for Zambia and other low-income African countries. The results from this study underscore the need for greater commitment from governments and policy-makers in African countries to start prioritizing mental illness stigma as a major public health and development issue.
Afr J Psychiatry | 2010

2009
Gender and community views of stigma and tuberculosis in rural Maharashtra, India
Atrea S., Kudalea A., Morankar S. et al.
Stigma associated with tuberculosis is often regarded as a barrier to health seeking and a cause of social suffering. Stigma studies are typically patientcentred, and less is known about the views of communities where patients reside. This study examined community perceptions of TB-related stigma.
Global Public Health | 2009

Stigma of People with HIV/AIDS in Sub-Saharan Africa: A Literature Review

Perceived HIV stigma and life satisfaction among persons living with HIVinfection in five African countries: A longitudinal study

Lepra News. Focus on: Fighting discrimination in Brazil

HIV-related stigma and discrimination: A summary of recent literature

Mediators of HIV-related stigma and risk behavior in HIV infected young women

Stigma, social support, and depression among people living with HIV in Thailand

Mental health and HIV/AIDS

Gender, race/ethnicity, and social class in research reports on stigma in HIV-positive women

Religion and HIV in Tanzania: influence of religious beliefs on HIV stigma, disclosure, and treatment attitudes

HIV stigma and missed medications in HIV-positive people in five African countries

Psycho-social impact and quality of life of people living with HIV/AIDS in South India

Associations Between Social Capital and HIV Stigma in Chennai, India: Considerations for Prevention Intervention Design

Psychotherapy as a treatment modality for psychiatric disorders: Perceptions of general public of Karachi, Pakistan

Community-Based Rehabilitation (CBR) & Leprosy, International Workshop Report

HIV and AIDS, stigma and AIDS support groups: Perspectives from women living with HIV and AIDS in central Thailand

Care and secrecy: Being a mother of children living with HIV in Burkina Faso

Development of a Yemeni AIDS Stigma Scale

Assessment of changes in knowledge and stigmatization following tuberculosis training workshops in Taiwan

HIV related stigma in the Netherlands

A comparison of HIV stigma and discrimination in five international sites: The influence of care and treatment resources in high prevalence settings

Video stories help health workers learn about the stigma of HIV/AIDS

Understanding and challenging TB stigma. Toolkit for action

A Human Rights-Based Approach to Neglegted Tropical Diseases

HIV Stigma and Nurse Job Satisfaction in Five African Countries

2008

Rethinking Theoretical Approaches to Stigma: A Framework Integrating Normative Influences on Stigma (FINIS)

HIV/AIDS related stigma in Kumasi, Ghana

Living on the outside: The impact of diabetes-related stigma

Marring Leishmaniasis: The Stigmatization and the Impact of Cutaneous Leishmaniasis in Pakistan and Afghanistan

Trauma, mental health, distrust, and stigma among HIV-positive persons: Implications for effective care

The stigmatization of leprosy in India and its impact on future approaches to elimination and control

Inclusion of persons affected by leprosy in community based rehabilitation

Global trends in disability rehabilitation and their implications for leprosy programmes

Epilepsy in Lao PDR: From research to treatment intervention

Changes in stigma among a cohort of people on antiretroviral ttherapy: Findings from Mombasa, Kenya

Tackling tuberculosis patients' internalized social stigma through patient centred care: An intervention study in rural Nicaragua

Part-time hospitalization and stigma experiences: a study in contemporary psychiatric hospitals

Fighting the stigma caused by mental disorders: past perspectives, present activities, and future directions

Help-seeking behaviour for sexual-health concerns: A qualitative study of men in Zimbabwe

2007
Resisting a stigmatized identity: Patients’ strategies for the management of the HIV/AIDS stigma in a public hospital in Uruguay

Stigma, gender, and their impact on patients with tuberculosis in rural Bangladesh

Social representations of tuberculosis: Stigma an prejudice

Technical guide on community-based rehabilitation and leprosy

Stigma: Formulating concepts and priorities for a public health agenda

Barriers to accessing tuberculosis services in rural Gambia

Culture and stigma: Adding moral experience to stigma theory

Epidemic of Inequality. Women's rights and HIV/AIDS in Botswana & Swaziland

Understanding and challenging HIV stigma. Toolkit for action

Measuring the degree of stigma and discrimination in Kenya

UN Position Paper Stigma and Discrimination

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Leave the village. Photo: UNAIDS WAC 2003
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