‘My biggest fear was that people would reject me once they knew my status…’: stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg,South Africa

Stigma is not a new concept; however, it remains highly significant in the context of HIV/AIDS in South Africa. There is wide consensus that HIV/AIDS‐related stigma compromises the well‐being of people living with the disease. This paper is part of a larger study that seeks to understand the social and cultural complexity related to the provision and outcomes of antiretroviral therapy (ART) in South Africa. It explores and analyses how patients on ART perceived and experienced stigma and how it has shaped their behaviour towards, as well as their understanding of the epidemic. The data have been collected by means of in‐depth face‐to‐face interviews, conducted between June and November 2007, with a sample of 44 patients in an HIV/AIDS clinic in a resource‐limited setting in Johannesburg, South Africa. The findings reveal that the level of felt and anticipated stigma is intense and affects all dimensions of living with HIV/AIDS, particularly disclosure and treatment. Stigma permeates the experience of HIV‐positive people on ART who participated in this study. The intensity of HIV/AIDS‐related stigma can threaten to compromise the value of ART, thus impacting on the daily lives of people living with HIV/AIDS (PLWHA). This study suggests that three decades into the epidemic, stigmatisation remains a core feature of the patient experience of HIV/AIDS. In the clinic in which this research was conducted, HIV/AIDS was regarded as a chronic condition increasingly manageable by ongoing access to ART. However, this approach was not shared by many family members, neighbours and employers who held highly stigmatised views.     

Attitudes towards and perceptions of reproductive health needs of persons living with HIV/AIDS in rural Kilimanjaro,Tanzania

The introduction of antiretroviral treatment has resulted in the resumption of socially productive and sexually active lives of people living with HIV/AIDS, together with the desire for children. However, factors affecting the reproductive health needs of people living with HIV/AIDS are not well understood. With this in mind, the aim of this paper was to investigate factors associated with these health needs using a qualitative approach. Findings indicate that attitudes and perceptions about reproductive health needs are influenced by fertility beliefs, the central role of family, procreation and the perceived social and clinical consequences of pregnancies among people living with HIV/AIDS. While there was mixed opinion about acceptability of people living with HIV/AIDS, having children, marriage and family were institutions important for partnerships maintenance and procreation. These findings suggest that living with HIV in a community with strong pro-life attitudes is challenging for people living with HIV/AIDS who do not have children. Apart from having to grapple with potential stigma of not having children, people living with HIV/AIDS also face social challenges in realising their reproductive choices. Interventions to address stigma, societal changes and the integration of reproductive-health education into HIV care and treatment are needed.     

Methadone maintenance therapy as evidence based drug abuse planning in developed countries: can developing countries afford and learn from this experience?

Use of illicit substances of abuse is a major public health problem in developed countries like the US. However, this problem of illicit substance use has spread like a tumor to include currently developing countries where most of its youths and adolescents are actively engaged in this illegal practice. This problem is even more worse in poor resource countries, as use of these substances is accompanied with a lot of HIV- risk behaviours, and for cocaine and heroin drug injectors often share injecting equipments hence increasing the chances of contracting and spreading HIV infection. Apart from HIV infection, other infections include hepatitis B, C, abscesses and other ill-health problems such as drug dependence manifested with complex set of behaviours related to mental illnesses. For non-drug injectors, the chances of contracting and spreading HIV through their unsafe/unprotected sexual behaviours especially those having multiple partners is there. Use of these illicit substances have other consequences like compromising the dosing schedule or adherence / poor compliance to ARTs/ARVs among those enrolled. Furthermore, use of illicit substances may be accompanied with domestic sexual violence which is done without using any protective (condoms) measures) leading to HIV/AIDS and unplanned pregnancies. However, various studies and preventive approaches have been tried in the US on drug abusers in order to prevent the associated adverse health outcomes. There are many reasons why people use drugs. In many situations, drugs are being used as artificial problem-solvers such as frustrations, stress or tiredness. Drugs can often make a problem disappear for a short time but not usually the answer for solving the problem. They just help to remove it temporarily. Other people choose to use drugs to enjoy the feelings or for recreational purposes which many drugs produce. For example, many people, especially young people, experiment with using drugs to find out more about the sensations they produce. Drug use is a problem to users when it begins to cause some damage to their physical health, mental health and social well-being. These include mental illness, diseases caused by or related to use of drugs e.g. practice of sharing needles or syringes among drug injectors and also non-drug injectors may acquire HIV/AIDS and Hepatitis, crimes and violence. However, the number of harm associated with the use of drugs is increasing in Tanzania and other developing countries in Sub-Saharan Africa and globally in developed nations like the US and many others.     

Containing the cost of care for people living with HIV/AIDS: an examination of the Medicaid managed care approach

This article examines Medicaid managed care's potential impact on people living with HIV/AIDS. The incongruence of the philosophy behind providing health and social services to people living with HIV/AIDS and with the philosophy behind the medical model of managed care is discussed. Health and social policy issues that various states have had to face concerning Medicaid managed care's administration of health benefits for people living with HIV/AIDS are examined. Research on managed care is employed to extrapolate potential managed care models that states might use to administer the health benefits for people living with HIV/AIDS. Finally, policy and research agendas are proposed to begin investigating Medicaid managed care's potential impact on people living with HIV/AIDS.     

Mortality among injecting drug users: a critical reappraisal.

STUDY OBJECTIVE--The aim was to quantify all cause mortality among injecting drug users. DESIGN--This was a retrospective analysis of 1989 data on injecting drug users and mortality obtained from three independent agencies: the Procurator Fiscal's Office, the General Register Office, and the Scottish HIV-test register. SETTING--Greater Glasgow, Scotland. SUBJECTS--Drug injectors, estimated population 9424. MAIN RESULTS--81 names were found using the three sources to identify deaths. After removing duplicates, 51 deaths were found. This represented a mortality rate of 0.54% in the estimated population. Among female injectors the mortality rate was 0.85%, significantly higher than the rate of 0.42% among male injectors (95% CI for the true difference in mortality rates between female and male injectors was 0.31%-0.55%). Over 90% of deaths were attributed to overdose or suicide. Although AIDS caused only one death, 19% of cases (5/27) whose HIV antibody status could be ascertained were positive. The mortality rate among HIV positive injectors (3.8%) was significantly higher than among HIV negative injectors (0.49%). CONCLUSIONS--Comprehensive coverage using three data sources revealed a far greater annual number of all cause deaths among injectors than would have been expected from previous research. The observed mortality rate was lower than in previous studies where the denominators used to calculate rates had an element of underenumeration. For the foreseeable future it is unlikely that AIDS will have much impact on mortality among injectors in Glasgow, because of the low prevalence of HIV infection among injectors in the city, and because HIV positive injectors are dying for reasons other than AIDS; rather, overdose and suicide will continue to be the main causes of death.     

HIV, heroin and heterosexual relations

This ethnographic study describes part of the social context in which heterosexual transmission of the human immunodeficiency virus (HIV) may be taking place. Based on interviews with sex partners of intravenous (IV) drug users in an urban, African American community of the United States, the study documents the personal experience of 35 men and women to show how living with one's own and/or one's partner's heroin habit may structure one's response to public health information and one's possibility of becoming infected with HIV. As described by sex partners of intravenous drug users, people who use heroin habitually are drawn into social networks that are loosely organized according to their preferred route of drug administration, i.e. 'shooters' (intravenous) and 'tooters' (intranasal), both of which tend to exclude 'squares' (non-use). Social divisions such as these may slow rates of HIV transmission to those outside the drug life. But nevertheless, as sex partners explain, there are many types of social and sexual exchanges taking place among shooters, tooters and squares, including but not limited to the exchange of bodily fluids. Ethnography analyzes discursive representations of such exchanges, filling in and questioning the empty categories of epidemiological prediction. How does risky behavior actually figure in the lives of individuals who happen to fall in the category of 'sex partner'? How is sexual behavior shaped by drug use behavior? Being sexually involved with an IV drug user for some years alters a person's relative position betwixt and between the drug subculture, on the one hand, and mainstream pursuits of family, work and church, on the other. Differences in personal need and group identity create conflicts. Couples in long-term relationships develop rules to manage these. But in which terms will they interpret and negotiate the new threat of AIDS? If the strategic aspect of discursive representations of experience is taken into account, and if discursive representations are interpreted within appropriate social and historical contexts, they can provide a rich source of material for understanding the social impact of the AIDS epidemic. Without this discursive dimension, analytic power to interpret seroprevalence data cross-culturally would be lacking. In addition, and independently of the problem of interpreting seroprevalence data, ethnographic analysis links local, culturally-specific meanings through which AIDS is interpreted to our understanding of AIDS as a global phenomena.     

HIV issues and people with disabilities: A review and agenda for research

The recent AIDS and Disability Partners Forum at the UN General Assembly High Level Meetings on AIDS in New York in June 2011 and the International AIDS Conference in Washington, DC in July 2012 underscores the growing attention to the impact of HIV and AIDS on persons with disabilities. However, research on AIDS and disability, particularly a solid evidence base upon which to build policy and programming remains thin, scattered and difficult to access. In this review paper, we summarise what is currently known about the intersection between HIV and AIDS and disability, paying particular attention to the small but emerging body of epidemiology data on the prevalence of HIV for people with disabilities, as well as the increasing understanding of HIV risk factors for people with disabilities. We find that the number of papers in the peer-reviewed literature remains distressingly small. Over the past 20 years an average of 5 articles on some aspect of disability and HIV and AIDS were published annually in the peer-reviewed literature from 1990 to 2000, increasing slightly to an average of 6 per year from 2000 to 2010. Given the vast amount of research around HIV and AIDS and the thousands of articles on the subject published in the peer-reviewed literature annually, the continuing lack of attention to HIV and AIDS among this at risk population, now estimated to make up 15% of the world's population, is striking. However, the statistics, while too limited at this point to make definitive conclusions, increasingly suggest at least an equal HIV prevalence rate for people with disabilities as for their non-disabled peers.     

Protective factors and resilience in people living with HIV/AIDS

The aim of this theoretical review was to articulate the resilience concept with key aspects in the lives of people living with HIV/AIDS. We emphasize the analysis of protective factors traditionally related to resilience (personal characteristics and social and affective support networks). The reviewed studies show important protective factors that contribute to the health and well-being of people with HIV/AIDS, such as cognitive coping and acceptance of their HIV status, family participation in treatment and family support, the role of governmental and nongovernmental institutions, and religious beliefs. The concept of resilience defined as a dynamic process that allows human beings to overcome adversities is essential for understanding HIV infection and treatment of AIDS patients. It helps decrease stigmatization and prejudice towards the disease and patients. It also helps alter the notion that living with AIDS is incompatible with well-being and quality of life and fosters the creation of new HIV/AIDS prevention and treatment perspectives.     

HIV / AIDS and STDs control: new policy perspectives

The prevention and control of HIV/AIDS is a social as well as a public health issue. This approach is reflected in new policy initiatives developed by the Government of India's National AIDS Control Organization in 1997. Future strategies will be based on a multisectoral, partnership-oriented approach. Bilateral agencies are encouraged to establish interventions in areas such as sexually transmitted disease (STD) control, condom distribution, counseling, health care, and hospice care. Special campaigns focused on youth and adolescents, including the inclusion of HIV/AIDS in the school curriculum, are planned. New strategies will be developed to address the HIV risk associated with drug abuse. The home- and community-based care of HIV/AIDS patients will be promoted, with emphasis on emotional and social support needs. Other areas to be addressed include the integration of STD control with primary health care, a blood transfusion policy, education for commercial sex workers, an end to discrimination against people with AIDS, and expansion of the national sentinel surveillance system.     

AIDS-related policies, legislation and programme implementation in India

This paper traces the evolution of AIDS-related policy and legislation in India from an initial response characterized by conservatism and discrimination to the development of a coherent national programme which aims to prevent the transmission of HIV and to develop support structures for people with HIV and AIDS. Examining the strategies, achievements and problems of specific components of the National AIDS Control Programme (NACP), the paper finds that the very progressive approach of national-level policy makers has been countered by conservative forces at the state and local levels. Little progress has been made, moreover, in incorporating HIV/AIDS prevention efforts into broader development and empowerment strategies. The paper concludes by considering the wider social context of AIDS in India and the role of more far-reaching policy measures.     

A descriptive analysis of older adults with HIV/AIDS in California.

Between 10 percent and 15 percent of all AIDS cases throughout the United States have been reported in people ages 50 and over. However, older adults often have been overlooked in research on HIV/AIDS. The study discussed in this article examined 571 individuals ages 30 to 81 who had been diagnosed with symptomatic HIV or AIDS. A cross-sectional analysisfound that those in older age groups were more likely to befemale, to live alone, to have private health insurance, and to have died during the study. The results of the study suggest that social workers need to be aware of and sensitive to the role of sociodemographic factors in the lives of older HIV-infected individuals.     

市场营销在社区吸毒人群艾滋病行为干预中的应用

目的：目前国内艾滋病高危人群的行为干预均在探索阶段。该研究旨在探索社区吸毒人群预防艾滋病的行为干预模式。方法：干预方法主要是以同伴为基础的社区健康教育、建立医学咨询服务点、避孕套及注射器市场营销。结果：1998－1999年四川省性病艾滋病防治协会在冰山州西昌市3个术开展了社区吸毒人群艾滋病干预项目。社区人群及吸毒人员干预后艾滋病知识均有明显提高（P＜0．01）。吸毒人员均放弃了共用注射器行为,但避孕套的推广使用不理想。结论：以同伴为基础的社区健康教育和避孕套及注射器营销在预防控制艾滋病方面是有效的手段,但避孕套的推广工作有待进一步改进。     

HIV and Pregnancy Intentions: Do Services Adequately Respond to Women's Needs?

Too little is known about how an HIV diagnosis and access to care and treatment affect women's childbearing intentions. As access to antiretroviral therapy improves, greater numbers of HIV-positive women are living longer, healthier lives, and many want to have children. Effectively supporting women's reproductive decisionmaking in the context of HIV requires understanding how pregnancy, reproduction, and HIV intersect and asking questions that bridge the biomedical and social sciences. Considering women to be at the center of decisions on health policy and service delivery can help provide an appropriate constellation of services. A clear research agenda is needed to create a more coordinated approach to policies and programs supporting the pregnancy intentions of women with HIV.     

Endangered womanhood: women's experiences with HIV/AIDS in China

Women in China are increasingly affected by HIV/AIDS. Current AIDS studies have examined the HIV risks faced by this gender group, paying inadequate attention to women's actual experiences with the disease. This oversight has inhibited our ability to understand the impact of gender on women's capacity to respond to HIV/AIDS in their postinfection lives. Based on a qualitative study on illness experiences of HIV-infected people, this article examines the interactions between HIV/AIDS and gender roles in the Chinese context. It was found that traditional gender norms have played a key role for HIV-infected women in their efforts to tackle this disease and to make sense of their daily lives. HIV infection has created a conflict between women's intention to fulfill their conception of "womanhood" and a decreased ability to do so, which, in turn, has adversely affected their self-perceptions and well-being. To avoid worsening the inequality women experience, therefore, we must also work on the socioeconomic conditions, for example, through delivering comprehensive care to affected families and developing a gender-sensitive welfare policy, so that the gender imparity that permeates this epidemic can be challenged and transformed.     

Religious beliefs and HIV / AIDS / STD health promotion

Most people are raised in an environment that espouses a religion. Religions use different codes to structure people's lives. These codes contribute to the enforcement of societal discipline. Some religious laws bestow privileges to men (e.g., polygamy), which may make women more vulnerable to HIV/sexually transmitted diseases (STDs). These laws do not reflect the great changes in lifestyles. Communities still condemn people with HIV/AIDS as deserving the infection because they are immoral. Some community members, proclaiming religion as their justification, control the content of health education by limiting health education to sexual abstinence and fidelity. Should not religions also support the promotion of condom use? Everyone needs to learn about HIV/AIDS and to have access to preventive methods. Educators and counselors must avoid moralizing, but should instead offer people different options to protect themselves and others. Health educators should emphasize those religious codes and edicts with positive values relevant to the HIV/AIDS pandemic. No religious law calls for ostracizing individuals. Religious laws prohibit stigmatization, discrimination, prejudice, and ill-treatment. Religions tend to call for tolerance. They are founded on a universal belief of duty to support all suffering persons and to help them receive the best possible care and treatment. Thus, religion can help make HIV infection an acceptable social condition. On the grounds of edict or morality, religion cannot be a non-participant. In many cases, religion has restored respect, dignity, and understanding for persons with HIV/AIDS. Many religious groups provide care for such persons.     

From the bottom up: tracing the impact of four health-based social movements on health and social policies

Although health-based social movements organized by grassroots activists have a rich history in impacting health and social policy, few systematic studies have addressed their policy change efforts or effectiveness. In this article, the authors trace how four health-based social movements-the women's health movement, ACT UP, breast cancer, and needle exchange-influenced health and social policy legislation. The activists' efforts wrested control of "authoritative knowledge" that had once been the sole domain of "experts" with advanced medical training. They used this knowledge to empower "average" people with medical information, promote self help and engage in civil disobedience, which led to changes in healthcare delivery, drug testing and approval, and increased research funds for HIV/AIDS, breast cancer, and needle exchange. The activists' efforts led to other health-based social movements that are currently, or will become, issues for health and social policy analysts in the future.     

Stigma and AIDS: Three Layers of Damage

Stigmata associated with HIV/AIDS can be organized into three layers. First, over 95% of persons with AIDS in the United States belong to social groups whose fundamental human rights had been truncated long before HIV had appeared—gay men, injection drug users, African-Americans, and Hispanics, and sex workers. All of these people had been isolated, ostracized, or constrained by law and/or tradition from occupying full citizenship. Long-term stigmatization has profound effects on the lives of the disdained, including the development of counterculture. In the case of gay men, for example, stigmatization led widely to creating and fostering a milieu of short-term, often anonymous, relationships as opposed to monogamy. Thus society's attitudes actually caused AIDS by guaranteeing transmission of HIV And, finally, stigmata intrude on prevention, in that society is inhibited from creating or supporting programs that are humane and sensitive to the needs of vulnerable people.     

The increasing chronicity of HIV in sub-Saharan Africa: Re-thinking "HIV as a long-wave event" in the era of widespread access to ART

HIV was first described as a "long-wave event" in 1990, well before the advent of antiretroviral therapy (ART). The pandemic was then seen as involving three curves: an HIV curve, an AIDS curve and a curve representing societal impact. Since the mid-2000's, free public delivery of life-saving ART has begun shifting HIV from a terminal disease to a chronic illness for those who can access and tolerate the medications. This increasing chronicity prompts revisiting HIV as a long-wave event. First, with widespread availability of ART, the HIV curve will be higher and last longer. Moreover, if patterns in sub-Saharan Africa mirror experiences in the North, people on ART will live far longer lives but with new experiences of disability. Disability, broadly defined, can result from HIV, its related conditions, and from side effects of medications. Individual experiences of disability will vary. At a population level, however, we anticipate that experiences of disability will become a common part of living with HIV and, furthermore, may be understood as a variation of the second curve. In the original conceptualization, the second curve represented the transition to AIDS; in the era of treatment, we can expect a transition from HIV infection to HIV-related disability for people on ART. Many such individuals may eventually develop AIDS as well, but after a potentially long life that includes fluctuating episodes of illness, wellness and disability. This shift toward chronicity has implications for health and social service delivery, and requires a parallel shift in thinking regarding HIV-related disability. A model providing guidance on such a broader understanding of disability is the World Health Organization's International Classification of Functioning, Disability and Health (ICF). In contrast to a biomedical approach concerned primarily with diagnoses, the ICF includes attention to the impact of these diagnoses on people's lives and livelihoods. The ICF also focuses on personal and environmental contextual factors. Locating disability as a new form of the second curve in the long-wave event calls attention to the new spectrum of needs that will face many people living with HIV in the years and decades ahead.     

Creating a different international HIV response for young people

This paper demonstrates that certain notions of young people in the HIV and AIDS response reveal an overly generalised understanding of 'youth' that does not reflect a realistic view of young people's identity and lives. Faulty stereotypes of 'youth'--such as the perceptions that young people are necessarily victims or risk-takers--result in many HIV programmes based on generalisations about young people, rather than their actual needs and realities. These stereotypes and generalisations dominate million dollar prevention programmes that have little effect on HIV incidence rates amongst young people. To create a different future for young people and achieve real and lasting change, this paper recommends three discrete but interrelated actions for the international HIV community to undertake now; to base programmes on definitions of young people that emerge from the setting in which the programme will be implemented; to ensure HIV prevention programming is targeted at specific groups of young people, rather than a 'one-size-fits-all' package; and to incorporate structural approaches into AIDS programming to address the underlying factors that make younger age groups more vulnerable to HIV--including age-related stigma, discrimination and human rights abuses.     

Drug abuse, HIV/AIDS and stigmatisation in a Dai community in Yunnan, China

The latest data indicate that between 540,000 and 760,000 people are infected with HIV in China. Although minority nationalities represent 8.1% of China's total population, they account for more than 30% of the reported HIV/AIDS cases. This study examined stigma and discrimination against drug abusers and people living with HIV/AIDS (PLHA) in a Dai minority nationality community in Yunnan, China. The study used qualitative research methods, which included participatory observations, in-depth interviews, focus-group discussions, transect walking and community mapping. A combination of different sampling strategies was used to maximise diversity of the initially selected sample. The data revealed deeply entrenched stigma and overt discrimination against drug abusers and PLHA that manifested in familial, work, civil and institutional contexts. The stigma reflected pre-existing cultural, religious sanctions against "deviant behaviours". Intervention programmes that were insensitive to the local culture and religion may have also contributed in part to the stigmatisation of drug abusers and PLHA. The major impact of stigma was that it created a vicious cycle of social isolation, marginalisation and thus addiction relapse. This in turn reinforced the stigmatisation and discrimination against drug abusers and thus hindered efforts towards prevention and control of HIV/AIDS.