AIDS Stigma Research Articles

Southern Discomfort: AIDS Stigmatization in Wilmington, North Carolina

Stigmatization creates particular spatialities, marginalizes people with HIV/AIDS and further endangers those engaged in risky behaviors. While HIV/AIDS in the American South resembles in many ways the national picture, there are cultural aspects specific to the South that make dealing with the disease particularly challenging and thus perpetuate the stigmatization process. In Wilmington, North Carolina, HIV/AIDS—both the disease and its victims—are stigmatized through various sociospatial mechanisms that I explore through 63 interviews with service providers, people with HIV/AIDS and other community members. Qualitative data analysis reveals that stigma can undermine efforts to prevent the further spread of HIV. Also, stigma can heighten vulnerability to HIV infection because fear of AIDS stigma and discrimination may deter people from being tested for the disease and from seeking information and assistance.

AIDS Stigma, Sexual Moralities and the Policing of Women and Youth in South Africa

HIV/AIDS stigma is a key driver of the epidemic in sub-Saharan Africa, undermining HIV-prevention and the care and treatment of people with HIV/AIDS (Ogden and Nyblade, 2005). In this dialogue piece, we seek to examine how the vicious stigmatization of people with HIV/AIDS is intertwined with the social construction of sexual moralities serving to perpetuate the social exclusion of women and young people in South Africa. We do this through highlighting our research into community responses to HIV/AIDS in two communities (one peri-urban and one rural) in Kwa-Zulu Natal province. We conclude by discussing the ongoing complexities of our efforts to implement these findings through our involvement in a community-led HIV/AIDS intervention in our rural research community.

Disease-Related Stigma

This study explores the prevalence of AIDS and cancer stigma as influenced by attitude toward homosexuality, religiosity, authoritarianism, and androgyny. This study used a quasi-experimental survey design (N = 485) to examine attitude toward people with AIDS and cancer, and interaction with people with AIDS and cancer. Negative attitudes toward homosexuality, high religious intensity and ideology, high authoritarianism, and low expressive emerged as factors related to more negative attitudes toward people with AIDS and unwillingness to interact with people with AIDS. Attitudes toward people with cancer were generally not related to the variables. Findings explore how to campaign efforts to reduce existing negative attitudes toward AIDS and homosexuality, given that gay men with AIDS are especially stigmatized. Implications and directions for future research are discussed, especially for interventions.

HIV and AIDS Stigma Violates Human Rights in Five African Countries

The situation and human rights of people living with HIV and AIDS were explored through focus groups in five African countries (Lesotho, Malawi, South Africa, Swaziland and Tanzania). A descriptive qualitative research design was used. The 251 informants were people living with HIV and AIDS, and nurse managers and nurse clinicians from urban and rural settings. NVivo software was used to identify specific incidents related to human rights, which were compared with the Universal Declaration of Human Rights. The findings revealed that the human rights of people living with HIV and AIDS were violated in a variety of ways, including denial of access to adequate or no health care/services, and denial of home care, termination or refusal of employment, and denial of the right to earn an income, produce food or obtain loans. The informants living with HIV and AIDS were also abused verbally and physically. Country governments and health professionals need to address these issues to ensure the human rights of all people.

Generalizing a model of health behaviour change and AIDS stigma for use with sexually transmitted infection clinic patients in Cape Town, South Africa

We tested the Information–Motivation–Behavioural Skills (IMB) model of AIDS preventive behaviour in South Africa. Prospective path analyses were performed on measures collected from 131 men and 60 women with sexually transmitted infections (STI) in Cape Town. Results showed that IMB constructs collected at baseline predicted risk reduction behaviour 3 months later. Risk reduction intentions were positively associated with risk reduction self-efficacy and self-efficacy was in turn positively associated with protective behaviour 3 months later. In a second model, AIDS-related stigmas correlated inversely with AIDS knowledge and there was a trend toward AIDS stigmas correlating inversely with behavioural intentions. Accounting for AIDS-related stigmas did not improve model fit. These findings parallel similar tests of the IMB model in US samples and suggest that the IMB model may generalize to South Africa and may therefore be useful in guiding HIV risk reduction interventions.

‘We are Not Fresh’: HIV-Positive Women Talk of Their Experience of Living with Their ‘Spoiled Identity’

Women have been identified as being at greater risk than men in South Africa's growing HIV epidemic. Stigma contributes to the epidemic, as it makes HIV-positive individuals reluctant to become identified and seek appropriate care. The purpose of this study is to begin to explore how women experience and deal with AIDS stigma under conditions where they have little formal support. In-depth, narrative interviews were conducted with ten HIV-positive women, living in a poor, black township in Cape Town. The study used both social constructionist and psychoanalytic theory to understand the impact that their ‘spoiled identity’ had on the emotional lives of these women. The study elicited women's narratives as they talked about their experience of living with a ‘spoiled identity’. The analysis suggested that the women drew on negative social discourses around HIV, which were then internalised, to become part of the self. However, the narratives also indicated the women's resistance to their stigmatised identity. The narratives illustrated their attempts to fend off the ‘spoiled identity’ by splitting off these bad representations and projecting them outside of themselves.

Programmes, resources, and needs of HIV-prevention nongovernmental organizations (NGOs) in Africa, Central/Eastern Europe and Central Asia, Latin America and the Caribbean

This study assessed the programmes, resources, and needs of HIV-prevention nongovernmental organizations (NGOs) in 75 countries in Africa, Central/Eastern Europe and Central Asia, Latin America and the Caribbean. Multiple databases and expert recommendations were used to identify one major HIV-prevention NGO in the capital or a large city in each country, and in-depth interviews were conducted with each NGO Director. Most NGOs are carrying out their programmes with minimal funding and few regularly employed personnel. Most are highly dependent on international donors, but reliance on small grants with short funding periods limits programme development capacity. HIV-prevention activities varied by region, with African NGOs most likely to use peer education and community awareness events; Eastern European NGOs most likely to offer needle exchange; Latin American NGOs to have resource centres and offer risk reduction programmes; and Caribbean organizations to use mass education approaches. Across regions, NGOs most often targeted the general public and youth, although specialized at-risk groups were the additional focus of attention in some regions. Limited funding, governmental indifference or opposition, AIDS stigma, and social discomfort discussing sex were often cited as barriers to new HIV-prevention programmes. NGOs are critical service providers. However, their funding, programmes, and resource capacities must be strengthened if NGOs are to realize their full potential in HIV prevention.

How stigmatizing is Stigma in the life of people living with HIV: A study on HIV positive individuals from Chennai, South India

The nature and intensity of AIDS stigma are shaped by the social construction of the epidemic in different locales. Stigma therefore needs to be discussed in its cultural context. This clinic-based study aims at understanding stigma among 203 HIV positive individuals from Chennai, South India. The study throws light on the impact of stigma on the quality of life among these individuals. It also discusses the gender implications of stigma. This study brings out the findings that actual stigma experienced among those infected with HIV is much less (26%) as compared to the fear of being stigmatized or perceived stigma (97%). Internalizing of stigma was found to have a highly significant negative correlation with quality of life in the psychological domain and a significant negative correlation in the environmental domain. However individuals who did experience actual stigma seemed more determined to live and experience an above moderate quality of life. The implication of this study encourages HIV infected individuals to rise above stigma, avoid internalizing their stigmatized feelings and work toward a better quality of life. Health providers need to address these issues in their care for HIV infected individuals.

Development of a Brief Scale to Measure AIDS-Related Stigma in South Africa

Although there has been progress in AIDS stigma research, there are no multi-item AIDS stigma scales that have been shown reliable and valid in Africa. The current research reports the development of the nine-item AIDS-Related Stigma Scale. Research conducted in five South African communities (N = 2306) found the scale internally consistent, alpha = 0.75 and time stable over 3 months, r = 0.67. The scale was also reliable in three different languages (English, Xhosa, and Afrikaans). Correlations showed that the AIDS-Related Stigma Scale was moderately inversely correlated with years of education and AIDS knowledge. In addition, individuals who stated that HIV positive persons should conceal their HIV status had higher AIDS-Related Stigma Scale scores. Also supporting the scale's construct validity, individuals who refused to report whether they had been tested for HIV scored higher on the AIDS-Related Stigma Scale.

Awareness, Acceptance, and Action: An Emerging Framework for Understanding AIDS Stigmatizing Attitudes among Community Leaders in Barbados

AIDS stigma must be acknowledged and reduced to advance HIV prevention and HIV/AIDS care in a variety of settings worldwide, including in the West Indies where national epidemics are thought to be growing rapidly. Regarded by international health organizations as a formidable barrier to service delivery and receipt, AIDS stigma refers to prejudice and discrimination directed toward people living with HIV/AIDS (PLHA), persons perceived as being at risk for HIV infection, and the informal and formal service providers who care for PLHA. However, there is little evidence of successful antistigma interventions in the literature. Furthermore, beyond studies of willingness in various professions to serve clients or patients with HIV/AIDS, the stigmatizing attitudes and behaviors of service delivery personnel, paraprofessionals and volunteers have been inadequately studied. This paper uses data obtained during an AIDS awareness workshop with sports coaches in Barbados to illustrate principles of an antistigma intervention framework being developed for social service and health personnel. The Awareness/Acceptance/Action Model (AAAM) draws on principles of mindfulness, rooted in ancient Asian traditions, and recently adapted to a range of physical and mental health interventions in Western contexts. Mindfulness techniques encourage awareness of one's current state and environment, acceptance of the implications of one's attitudes and behaviors, and the development of intentional responses rather than habitually patterned reactions. In this initial effort, community leaders were guided through a series of self-reflective exercises focusing AAAM principles on their tendencies toward AIDS stigma, and exploring more compassionate and functional alternatives.

AIDS-Related Stigma and Social Interaction: Puerto Ricans Living With HIV/AIDS

People living with HIV/AIDS are stigmatized. Although personal and social consequences of this stigmatization have been documented, research regarding its impact on social interactions is scarce. Latinos, and Puerto Ricans in particular, have voiced concern regarding AIDS stigma. The authors investigated the key role of social interaction in the process of stigmatization through in-depth, semistructured interviews in a sample of 30 Puerto Ricans living with HIV/AIDS. Participants reported instances in which AIDS stigma negatively influenced social interactions with family, friends, sexual partners, coworkers, and health professionals. Some of the consequences they described were loss of social support, persecution, isolation, job loss, and problems accessing health services. Findings support the need for interventions to address AIDS stigma and its consequences.

Managing AIDS stigma

According to anecdotal reports, AIDS stigma and discrimination continue to influence people living with and affected by HIV disease as well as their health care providers, particularly in southern Africa where the burden of AIDS is so significant. Stigma is perceived as a major limiting factor in primary and secondary HIV/AIDS prevention and care. It reportedly interferes with voluntary testing and counselling, and with accessing care and treatments, thereby increasing suffering and shortening lives. Many health care workers in southern Africa have come to the conclusion that unless stigma is conquered, the illness will not be defeated. While there is substantial anecdotal evidence of the impact of stigma on AIDS care, very little rigorous research has been conducted. This article explores three questions: What is AIDS stigma? What is the impact of AIDS stigma? How can health care providers help to manage AIDS stigma?

Traditional beliefs about the cause of AIDS and AIDS-related stigma in South Africa

AIDS-related stigmas are pervasive in some segments of South African society and stigmas can impede efforts to promote voluntary counselling and testing and other HIV-AIDS prevention efforts. The current study examined associations among the belief that AIDS is caused by spirits and supernatural forces, AIDS-related knowledge and AIDS-related stigmas. A street intercept survey with 487 men and women living in a Black township in Cape Town, South Africa showed that 11% (n=54) believed that AIDS is caused by spirits and supernatural forces, 21% (n=105) were unsure if AIDS is caused by spirits and the supernatural, and 68% (n=355) did not believe that AIDS is caused by spirits and supernatural forces. Multiple logistic regression analyses controlling for participant age, gender, years of education and survey venue showed that people who believed HIV-AIDS is caused by spirits and the supernatural demonstrated significantly more misinformation about AIDS and were significantly more likely to endorse repulsion and social sanction stigmatizing beliefs against people living with HIV-AIDS. However, nearly all associations between beliefs that AIDS is caused by spirits and AIDS stigmas were non-significant when logistic regressions were repeated with AIDS-related knowledge included as a control variable. This finding suggests that relationships between traditional beliefs about the cause of HIV-AIDS and AIDS stigmas are mediated by AIDS-related knowledge. AIDS education efforts are urgently needed to reach people who hold traditional beliefs about AIDS to remedy AIDS stigmas.

Narrative in Times of Crisis: AIDS Stories in Ghana

African society, believing in the power of the spoken word to evoke memories of past tragedies, proscribes direct verbal references to calamities and tragedies that befall individuals, localities, and states. Yankah discusses an underlying element of avoidance or circumvention in discourses on AIDS, based on fear, superstition, or embarrassment about the AIDS stigma. Deadly diseases are distanced and depicted as exotic in folk constuctions, and so are the carriers.The emphasis on difference, or the conscious avoidance of characterizing carriers as sharing features with the speaker, is meant to legitimize intra-group behavior and depict the exoteric as deviation. Safer sex discourse is also informed by cultural anxieties about the open discussion of sexuality, symbolic meanings associated with condom use, and perceptions of how AIDS is transmitted. One important attitude in the risk discourse on AIDS is the denial of infection, or the conviction that one's affliction is anything but that particular dreaded disease. The avoidance discourse is specifically targeted at the connotations of promiscuity, prostitution, and moral deviance that AIDS conjures. In Africa, this is compounded by superstitious beliefs about illness in general, and the ascription of deadly diseases to supernatural causes. The essay is based on personal observations and interviews with HIV/AIDS patients and their relatives in Ghana.

HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in Cape Town, South Africa

Objectives: A cornerstone of HIV prevention in South Africa is voluntary HIV antibody counselling and testing (VCT), but only one in five South Africans aware of VCT have been tested....

The meaning of complementary and alternative medicine practices among people with HIV in the United States: strategies for managing everyday life.

The meanings of complementary and alternative medicine (CAM) practices in the everyday lives of people with HIV in the United States were investigated. Interviews of people with HIV revealed that two out of three interviewees (N = 62) used some form of CAM over the course of their ongoing HIV infection. Management of their everyday lives as ill persons was improved to the extent that CAM meanings addressed self-regulation of treatment practices and strategies to cope with uncertainty. Four main strategies are dealt with: managing symptoms, medications and emotions; self experimenting to evaluate disease progression; gaining freedom from medical regimens; and managing AIDS stigma. It was shown that CAM practices are one way people with HIV can increase control over their illness and attempt to normalise health status. CAM practices were discussed in the context of self-regulation in relation to other illnesses.

Fighting AIDS stigma. Caring for all.

The International Council of Nurses (ICN) chooses a theme each year to heighten awareness of an issue facing nurses working all over the world, and uses International Nurses Day, 12 May, to focus attention on the plight of patients' suffering. This year's theme is Fighting AIDS stigma: caring for all. This article looks at the current situation with regards to HIV/AIDS and how it affects the public, patients and healthcare staff.

Will you lapse into adolescent Valentine’s Day mode if no one sends you a Nurses Day card this year?

Born in Italy on May 12 1820 and named for the city in which she was born, Florence Nightingale lived to the ripe old age of 90. The day of her birth is commemorated every year on International Nurses Day and this year the International Council of Nurses has chosen Fighting AIDS Stigma: Caring for All as its international theme for the day, although the comprehensive information kit it has produced is designed to be used throughout the year. Find out more from the ICN website at www.icn.ch

Interventions to Reduce HIV/AIDS Stigma: What Have We Learned?

This article reviews 22 studies that test a variety of interventions to decrease AIDS stigma in developed and developing countries. This article assesses published studies that met stringent evaluation criteria in order to draw lessons for future development of interventions to combat stigma. The target group, setting, type of intervention, measures, and scale of these studies varied tremendously. The majority (14) of the studies aimed to increase tolerance of persons living with HIV/AIDS (PLHA) among the general population. The remaining studies tested interventions to increase willingness to treat PLHA among health care providers or improve coping strategies for dealing with AIDS stigma among PLHA or at-risk groups. Results suggest some stigma reduction interventions appear to work, at least on a small scale and in the short term, but many gaps remain especially in relation to scale and duration of impact and in terms of gendered impact of stigma reduction interventions.

Shrouded in secrecy: breaking the news of HIV infection to Ghanaian women.

The purpose of this research was to examine the experience of HIV-positive Ghanaian women and to identify factors that influenced their vulnerability to infection. The study was carried out in Ghana from January to May 1999 using participatory action research. In-depth interviews and focus groups with 31 HIV-positive women, 5 HIV-positive men, 8 nurses, 10 professionals, and 2 traditional healers were used to collect the data. The need for secrecy in "breaking the news" emerged as an important theme. Secrecy affected the women's access to treatment and to financial and emotional support from families. The secrecy surrounding breaking the news of HIV infection is one manifestation of AIDS stigma in Ghana. Encouraging disclosure within a trusting and supportive environment may be one strategy to diffuse AIDS stigma in Ghana. Educational interventions to eliminate AIDS stigma among health care professionals, including nurses, are required in Ghana.