Hope of a nation - experiences of social exclusion giving rise to spaces of inclusion for people living with HIV and AIDs in South Africa : a reflection

South Africa has one of the highest rates of HIV/AIDS in the world. No one particular group is affected by the virus – rather, it is indiscriminate. Responses to HIV are diverse, and can be starkly contradictory. This author lived among the Xhosa people in rural Eastern Cape, working in community development. The program was a population-based youth empowerment program around HIV prevention. The work involved engaging youth in a range of civic participation activities, and networking with other community based groups and organisations, health and social services, and government departments. This reflection out a narrative of the lived experiences of social exclusion and social connectedness for people living with HIV/AIDS in rural Eastern Cape. It draws out the paradox of how the high prevalence of stigma and discrimination towards those with the illness, and their subsequent experience of social exclusion, actually creates opportunities for social connectedness through support group participation. This in turn is fashioning an emerging social movement breaking down barriers of stigma, and contributing to broader social change to support HIV action.

The reflection begins by outlining the current context and underlying determinants of the proliferation of HIV in the Eastern Cape, including a discussion of exclusion as a determinant. An exploration of how exclusion is also experienced as an outcome of positive HIV status follows. Finally, an explanation of how the experience of exclusion can be transformed into spaces of connectedness, and implications for health promotion practice in this context is also presented.

You can spend your life dying or you can spend your life living : identity transition in people who are HIV-positive

This article examines, through the lenses of HIV-positive people, the unique phenomenon of identity transition. This research proposes that life-changing illnesses, such as HIV, are an undesired 'possession' that people accept to varying degrees, which we refer to as 'ownership'. While illnesses, such as HIV compel individuals to undergo a transformation process that usually begins with a deep feeling of detachment, and then proceeds to acceptance of their illness, and to feeling empowered and in control of their HIV status and lives, this process is very complex and non-linear as it involves many iterative progressions in identity transition. These transitions are highly individualistic; however, the underlying theme is that the more positive trajectories were those of people who focus on their new lives, living with HIV (i.e. taking ownership of their illness), rather than focusing on what they have lost when they became HIV-positive. The findings demonstrate that identity transition is a result of the ways that individuals rework, negotiate and transform their roles, actions and behaviours through their active engagement with support mechanisms. This study suggests that it is vital to promote positive interactions with support mechanisms to ensure that those with HIV view themselves positively.

Investigating socio-economic status and chronic illness: directions and dilemmas

In Australia, chronic illness is increasing being recognised as more important. Yet there is relatively little discussion of the nature of the role played by socio-economic status (SES) plays in its prevalence. This paper argues there are two effects of SES. The first is that lower SES can lead to an increase in chronic illness, as evidenced by a number of epidemiological studies. The second is that chronic illness can contribute to lower SES. Examples are provided of the different types of relationships. Difficulties associated with SES analyses and its relationship to chronic illness are discussed, and specific conditions such as HIV/AIDS are referred to as examples. In addition the work of Marmot on SES and chronic illness is drawn on. The authors identify a number of areas that require further research, and recommend that in studies of chronic illness, SES may be a contributing variable, and outcome, or both.

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.

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.

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.

The packaging and maturation of the HIV-1 Pol proteins

The Pol protein of human immunodeficiency virus type 1 (HIV-1) harbours the viral enzymes critical for viral replication; protease (PR), reverse transcriptase (RT), and integrase (IN). PR, RT and IN are not functional in their monomeric forms and must come together as either dimers (PR), heterodimers (RT) or tetramers (IN) to be catalytically active. Our knowledge of the tertiary structures of the functional enzymes is well advanced, and substantial progress has recently been made towards understanding the precise steps leading from Pol protein synthesis through viral assembly to the release of active viral enzymes. This review will summarise our current understanding of how the Pol proteins, which are initially expressed as a Gag-Pol fusion product, are packaged into the assembling virion and discuss the maturation process that results in the release of the viral enzymes in their active forms. Our discussion will focus on the relationship between structure and function for each of the viral enzymes. This review will also provide an overview of the current status of inhibitors against the HIV-1 Pol proteins. Effective inhibitors of PR and RT are well established and we will discuss the next generation inhibitors of these enzymes as well recent investigations that have highlighted the potential of IN and RNase H as antiretroviral targets.

HealthMap: a cluster randomised trial of interactive health plans and self-management support to prevent coronary heart disease in people with HIV

BACKGROUND: The leading causes of morbidity and mortality for people in high-income countries living with HIV are now non-AIDS malignancies, cardiovascular disease and other non-communicable diseases associated with ageing. This protocol describes the trial of HealthMap, a model of care for people with HIV (PWHIV) that includes use of an interactive shared health record and self-management support. The aims of the HealthMap trial are to evaluate engagement of PWHIV and healthcare providers with the model, and its effectiveness for reducing coronary heart disease risk, enhancing self-management, and improving mental health and quality of life of PWHIV.

METHODS/DESIGN: The study is a two-arm cluster randomised trial involving HIV clinical sites in several states in Australia. Doctors will be randomised to the HealthMap model (immediate arm) or to proceed with usual care (deferred arm). People with HIV whose doctors are randomised to the immediate arm receive 1) new opportunities to discuss their health status and goals with their HIV doctor using a HealthMap shared health record; 2) access to their own health record from home; 3) access to health coaching delivered by telephone and online; and 4) access to a peer moderated online group chat programme. Data will be collected from participating PWHIV (n = 710) at baseline, 6 months, and 12 months and from participating doctors (n = 60) at baseline and 12 months. The control arm will be offered the HealthMap intervention at the end of the trial. The primary study outcomes, measured at 12 months, are 1) 10-year risk of non-fatal acute myocardial infarction or coronary heart disease death as estimated by a Framingham Heart Study risk equation; and 2) Positive and Active Engagement in Life Scale from the Health Education Impact Questionnaire (heiQ).

DISCUSSION: The study will determine the viability and utility of a novel technology-supported model of care for maintaining the health and wellbeing of people with HIV. If shown to be effective, the HealthMap model may provide a generalisable, scalable and sustainable system for supporting the care needs of people with HIV, addressing issues of equity of access.