An Asia Pacific six-country study on HIV-related discrimination : introduction

This paper outlines a six-country study of institutionalised forms of HIV/AIDS-related discrimination in the Asia-Pacific region. Although recognised as a barrier to disease prevention and treatment, very limited data are available on the effects of institutionalised HIV-related stigma and discrimination. Understanding the forms of discrimination within the institutions where they occur is the first step to identifying effective ways of promoting compassionate, non-discriminatory treatment of PLWHA. Thus, the goal of this research project was to document institutional discrimination against PLWHA, as guided by the UNAIDS Protocol for the Identification of Discrimination Against People Living with HIV (2000), in six Asian countries: India, Thailand, Philippines, China, Vietnam and Indonesia. As a precursor to the six individual studies, this paper provides a brief overview of the literature on HIV discrimination, and then describes the UNAIDS Protocol and the shared methodological considerations relevant to all of the study sites. Commonalities in sampling, procedures and analysis are also discussed.

HIV, stigma, and rates of infections : a rumour without evidence

The modern concept of a social stigma comes from the work of American sociologist Erving Goffman, who described it as a response to a deeply discrediting attribute that devalues the person [1]. In the medical literature, stigma is almost inevitably written about in terms of adverse social sequelae of a disease—such as leprosy, tuberculosis, epilepsy, schizophrenia, or filariasis [2–6]—or a physical characteristic or functional loss, such as obesity, deafness, or paraplegia [7–9]. The consequences of stigma range from moderate opprobrium at one end of the spectrum to death [10].

Future research on structural and institutional forms of HIV discrimination

There is scant research into HIV discrimination, particularly structural and institutional forms of it. This appears, in part, to arise from a prevailing view that the solutions to HIV discrimination are known a priori and in the absence of additional data. The six country studies into HIV discrimination presented in this AIDS Care supplement suggest that this is not the case. There needs to be an acceptance that if the issue of HIV discrimination is to be tackled successfully and based on evidence, then incremental and effortful steps need to be taken to develop that evidence base. This is discussed.

The lived experience of gay men caring for others whith HIV/AIDS : resilient coping skills

There is a dearth of research conducted on the relationship aspect of gay men caring for gay men. This Australian research conducted in 2002 investigated the emotional effects of HIV/AIDS on the gay male carers of gay men with the disease. This study was phenomenological inquiry and employed van Manen's approach to content analysis. Twelve participants for the study were recruited. The results produced emergent themes relating to coping with HIV/AIDS, living day-to-day with HIV/AIDS, coping with the last phase of AIDS towards death, saying goodbye and remembrance. This research highlights the resilient coping style of carers of persons living with HIV/AIDS. The research also gives rise to recommendations for practice and educational contexts in terms of the support and care considerations for persons living with HIV/AIDS and their carers.

Thought processes associated with reluctance in gay men to be tested for HIV

This study explored the thought processes that are associated with reluctance in gay men to be tested for HIV antibodies. The sample comprised 97 men who had not been tested for at least four years; 69 had never been tested. They were asked to imagine that someone had suggested that they be tested very soon and to identify, from the list provided, any negative thoughts prompted by this suggestion. The most commonly reported thoughts were that testing was unnecessary because risks had not been taken, that it was unnecessary because there were no symptoms, and that there was no urgency to be tested. Data were explored by means of factor analysis and comparisons across subgroups differing in risk level. The results are interpreted as indicating the use of rationalizations to buttress a decision not to be tested, the powerful influence on HIV decision-making exerted by salient perceptible features, and the ‘status quo bias’. Techniques that could be used to encourage testing in gay men are discussed.

Markers and risk factors for HCV, HBV and HIV in a network of injecting drug users in Melbourne

Background and aims: Current injecting drug users (IDU) in major street drug markets within greater Melbourne were recruited to a longitudinal study on blood borne viruses. Here we investigated risk factors for hepatitis C virus (HCV), hepatitis B virus (HBV) and HIV infection in these IDU at the time of their recruitment.

Methods : Three hundred and eighty-two IDU completed detailed questionnaires on their drug use and risk behaviours, and provided blood samples for serology testing. These data were analysed using univariate and multivariate techniques.

Results : The overall prevalence of exposure to HCV, HBV and HIV was estimated at 70%, 34% and <1%, respectively. Independent predictors of HCV exposure were history of imprisonment (RR 1.34, 95% CI 1.19–1.52), use of someone else's needle or syringe (RR 1.23, 95% CI 1.07–1.42), >7.6 years length of time injecting (RR 1.21, 95% CI 1.07–1.37), and originating from Vietnam (RR 1.12, 95% CI 1.07–1.18). Independent predictors of HBV exposure were HCV exposure (RR 2.15, 95% CI 1.35–3.43), >7.6 years length of time injecting (RR 1.57, 95% CI 1.17–2.13) and originating from outside Australia (RR 1.60, 95% CI 1.22–2.10). Neither prison- nor community-applied tattoos predicted HCV or HBV exposure. Up to 31% of IDU who injected for 1 year or less were HCV antibody positive, as were 53% of those who injected for 2 years or less.

Conclusions : Ongoing engagement with young IDU, through the provision of harm reduction education and resources, is critical if we are to address blood borne viral infections and other health and social harms associated with injecting drug use.

Evaluation of a community-based mental health drug and alcohol nurse in the care of people living with HIV/AIDS

There is a growing need for advanced practice mental health and drug and alcohol nursing roles in the care of people living with HIV/AIDS; however, limited publications address these domains. This study evaluated a community-based mental health drug and alcohol nurse role caring for people living with HIV/AIDS (Mental Health D&A Nurse) in a large not-for-profit district nursing organization providing care to people living with HIV/AIDS in an Australian city. Outcomes from a client assessment and 6–8-week follow-up by the Mental Health D&A Nurse are presented as captured by the Depression Anxiety Stress Scales (DASS 21), Alcohol, Smoking and Substance Involvement Screening Test (ASSIST), Health of the Nation Outcome Scales (HONOS) and WHOQoL BREF. Mean scores and caseness were analysed, and significant differences were found on the 'impairment' and 'social problems' subscales of the HONOS. Results of semi-structured interviews with clients describe effective and supportive mental health care and health-promoting education following visits by the Mental Health D&A Nurse. These positive findings support continuing implementation of the role within this community setting and indicate that even greater benefits will ensue as the role develops further. Findings are of interest to clinicians and policy makers seeking to implement similar roles in community-based HIV/AIDS care.

Commercial sex work, survival sex, sexual violence and HIV/AIDS prevention in Arumeru District, Arusha region Of Tanzania

Objective: To examine the knowledge and practices about HIV/AIDS among female Tanzanian commercial sex workers (CSWs) and assess the contextual dynamics that prevent safer sexual behaviours.

Method: The study used mixed methods and was implemented in two phases. Phase one assessed the knowledge and practices about HIV/AIDS among CSWs. Data were obtained with 54 CSWs, who were selected by using a snowball sampling approach. Semi-structured, face-to-face interviews with the CSWs were undertaken to allow the research participants to describe and discuss their lived realities as they perceive and experience them. In phase two, three discrete focus group discussions, each comprising 6-10 women, were carried out with 26 of the 54 CSWs who were interviewed in phase one.

Results: There was exploitation and inequity in the women's lives due to the multiple and overlapping oppressions of poverty and patriarchy. Sexual violence was framed, legitimised and reinforced by structural and cultural inequities. Such exploitation impacted not only on CSWs' lives as sex workers, but on their previous and/or simultaneous lives as mothers, wives, girlfriends and daughters. The women practised ‘survival sex’ as CSWs and/or sexual partners of men, and experienced sexual violence from their clients/partners. This violence was either culturally legitimised within a patriarchal framework or manifested itself as ‘displaced aggressive sex’ by men experiencing marginalisation in socio-economic spheres.

Cost-effectiveness of adult circumcision in a resource-rich setting for HIV prevention among men who have sex with men

Background.  We examined the effects and cost‐effectiveness of 4 strategies of circumcision in a resource‐rich setting (Australia) in a population of men who have sex with men (MSM).

Method.  We created a dynamic mathematical transmission model and performed an economic analysis to estimate the costs, outcomes, and cost‐effectiveness of different strategies, compared with those of the status quo. Strategies included circumcision of all MSM at age 18 years, circumcision of all MSM aged 35–44 years, circumcision of all insertive MSM aged 18 years, and circumcision of all MSM aged 18 years . All costs are reported in US dollars, with a cost‐effectiveness threshold of $42,000 per quality‐adjusted life‐year.

Results.  We find that 2%–5% of human immunodeficiency virus (HIV) infections would be averted per year, with initial costs ranging from $3.6 million to $95.1 million, depending on the strategy. The number of circumcisions needed to prevent 1 HIV infection would range from 118 through 338. Circumcision of predominately insertive MSM would save $21.7 million over 25 years with a $62.2 million investment. Strategies to circumcise 100% of all MSM and to circumcise MSM aged 35–44 years would be cost‐effective; the latter would require a smaller investment. The least cost‐effective approach is circumcision of young MSM close to their sexual debut. Results are very sensitive to assumptions about the cost of circumcision, the efficacy of circumcision, sexual preferences, and behavioral disinhibition.

Conclusions.  Circumcision of adult MSM may be cost‐effective in this resource‐rich setting. However, the intervention costs are high relative to the costs spent on other HIV prevention programs.

Bacille Calmette-Guérin vaccine-related disease in HIV-infected children: a systematic review

Objective: To describe the characteristics and risk of bacille Calmette-Guérin (BCG) vaccine related disease in human immunodeficiency virus (HIV) infected infants.
Methods: Systematic literature review of articles published from 1950 to April 2009 in the English language. We identified all microbiologically confirmed cases of disseminated BCG disease in vertically HIV-infected children reported in the literature.
Results: Sixteen observational studies and 11 case reports/series were included. Observational studies suffered from high rates of loss to follow-up and death. Loco-regional BCG disease was reported in both HIV-infected and non-infected children. Disseminated BCG disease was reported only in children with immunodeficiency and only in studies employing sophisticated laboratory techniques. Sixty-nine cases of disseminated BCG were identified in the literature: 47 cases were reported in six observational studies, the majority (41/47) from the Western Cape of South Africa. A Brazilian cohort study reported no cases of disseminated BCG amongst 66 HIV-infected children observed over a 7-year period. A recent South African surveillance study reported 32 cases of disseminated BCG over a 3-year period, estimating the risk of disseminated BCG to be 992 per 100 000 vaccinations in HIV-infected children. Few cases of severe disseminated TB were reported in the cohort studies among HIV-infected children vaccinated with BCG.
Conclusion: Data on the risk of BCG vaccination in HIV-infected children are limited. Targeted surveillance for BCG complications employing sophisticated diagnostic techniques is required to inform vaccination policy.

Lived experience of gay men caring for others with HIV/AIDS : living, loving and dying in the era of HIV/AIDS

This thesis explored gay male carers’ experience of caring for their partner, brother or friend who had HIV/AIDS. Through using phenomenological methodology (van Manen, 1990), the day-to-day caring experiences were uncovered. The data gathered were then analysed through a nursing ‘lens’, with the concept of stigma as an anchoring point. The dual stigmas of homophobia and AIDS phobia impacted on the daily lives of these men as they cared for their loved one. The research identified six themes. These were: 1) the relationship; 2) coping with HIV and AIDS; 3) the corporal impact of HIV/AIDS; 4) experiences of carers including the absence of others; 5) living daily with the virus: Demands of people living with HIV/AIDS (PLWHA); and 6) saying goodbye, but wanting to keep the memory alive. The caring these men undertook, for which they were frequently unprepared, was intensive and complex, but because of their commitment and love they battled on. Because of a sense of shame associated with AIDS phobia on the part of the PLWHA, the carer often had to undertake this care in isolation, without support from family, friends or home health care agencies. The carers struggled with not only the demands of day-to-day care, but also with non-acceptance from family, both of the nature of the relationship with their partner and of their homosexuality. Family members were forced, often with great difficulty, to acknowledge the close commitment the men had to each other. Recognition that one had a terminal disease, HIV/AIDS was also required. The fear of potential transmission was high among carers, friends and family members. Notably, there was an absence of blame on the part of the carer towards his partner for contracting HIV/AIDS. The physical decline and marking of the body further stigmatised the PLWHA, which added to carers’ burdens. They endeavoured to minimise the physical decline in their partner, so he could continue to pass as healthy, and attempted to make the day-to-day living as normal as possible. The methods of combating weight loss and opportunistic infections meant frequent medical appointments, complex intensive medical procedures and help with personal care, which was undertaken at home largely without support from health care staff. Carers frequently struggled also with their partner’s denial of being ill. One strategy all carers used was to escape with their partners from their everyday life in Melbourne and attempt metaphorically to leave the HIV/AIDS behind; this was a time when they could rekindle their life together as it was before HIV/AIDS came into their lives. Some carers chose to holiday without their partner, to give themselves a break from the day-to-day caring, while others planned and took holidays with their partner. The decline of the health in the PLWHA meant that family members had to recognise and accept both the nature of the relationship and the presence of the disease. This recognition and acceptance often came only when the partner was very ill, even at the point of dying. Carers and their partners discussed the potential use of euthanasia, as a means of ending the final phase of life with some dignity. One carer and his partner used euthanasia, despite its illegal status. The main concern for all carers was providing comfort and a reduction in the pain associated with HIV/AIDS for the partner. The widespread grief associated with HIV/AIDS was evident amongst these carers. All had known other gay men who had died, some carers own partner had died, or was about to die. There was an overwhelming sense of grief, which at times was repressed as a means of coping day-to-day. All carers felt it was important and necessary to remember those lost to HIV/AIDS through the various public memorials, as they did not want their partner to be just another faceless person lost to this disease. This phenomenological study of carers’ experience highlights the need for health care workers to be aware of the differing strategies that gay men use to cope with HIV/AIDS. While it may seem that the carers are coping with care of their partner, the outer façade is not always an accurate portrayal of the true situation. Health care workers should enquire as to the assistance these carers need from health care services in order to continue to care for their loved one. Such assistance can be the simple recognition of the partner and acceptance of them as part of the PLWHA’s network; this inclusion and acceptance is half the battle.