HIV/AIDS is one of the most challenges to human life and dignity. It affects all levels of the society and has a massive impact on global economic and social development, (Rowden, 2009). Studies have been conducted on its impact on human life and how it could be controlled. This review was conducted by visiting a number of websites of different publishers and organisations for published articles on HIV/AIDS and stigma. Literature covering a period of 8 years from 2002-2010 was extracted from Assia, PubMed, Sage, British Medical Journal, Cochrane and Absco-host. However due to the topic in question, literature from most recent articles would have been preferred. The term HIV/AIDS stigma was used to capture a wide range of articles covering all areas of the globe. Abstracts from twenty studies were reviewed for the study, objectives, methodology and key findings. Twelve studies covering different locations of the world were chosen. Relevant documents and reports from other organisations such as UNAIDS, WHO and the World Bank were also reviewed. Both qualitative and quantitative data was used to present the information.
Due to the challenges presented by HIV/AIDS to global public health, Baum. (2008:241) calls for collective participation of all sectors in the fight against this deadly disease. Baum emphasises on the collective participation between the lay people and the health structures as key to success. This is further supported by Farmer, (1999), who does not condone the dominance of the biomedical perspective in health and healing. He believes that lay people have a significant role in the process of health improvements and emphasises on the importance of listening to, and understanding the lay peoples’ experiences of ill-health and how it is affected by their daily lives.
Goffman, (1963), and Parker and Aggleton, (2003),’s theories of stigma help us to understand how stigma is constructed and its influence in peoples’ lives. They view stigma and discrimination as functional systems which maintain boundaries between those in power and those without. Through such power, social inequalities are developed leading to creation of social norms. These formulate stigma by governing interactions between people and reinforce power structures that serve to isolate those that are regarded as outsiders, ( ). Both theories have been widely used in HIV related stigma to highlight how the prejudice, negative attitudes, abuse and maltreatment directed towards people living with HIV/AIDS have hindered the progress of prevention and treatment.
Findings from the studies highlight the significance of lay people for prevention and treatment of HIV/AIDS to be effective. In Tanzania, the study unveiled some discriminatory and stigmatised practices such as gossiping about patients’ HIV’s status, neglect, verbal abuse, testing and disclosing HIV’s status without consent, (Tanzania’s Stigma Indicators Field Test Group, 2005). Similarly in India, health workers were disclosing patients’ HIV status to their families without the patients’ consent, (Journal of Social Aspects of HIV/AIDS, 2007). Harassment, avoiding and isolation of HIV-positive patients and testing without counselling are common features of stigmatisation in most studies. Findings showed that stigma and discrimination in health care settings contribute a great deal in keeping people away from accessing HIV/AIDS treatment and care, therefore compromising their health and wellbeing. Patients felt greatly affected by the health workers feeling uncomfortable with them and treating them in an inferior manner. Some health workers wore protective clothing even if there was no physical contact during interactions. This affected peoples’ willingness to access the services despite it being vital to their health. The fear of being identified as infected with HIV was one of the reasons why some people prolonged testing for HIV even though they had the symptoms and only accessed services when their illness was at an advanced stage, (Bond, Aggleton, 2002, Human Resources of Health, 2007, Kinsler et al, 2007, Varga, Sherman, Jones, 2006, Kalichman, Simbayi, 2003). In Zambia, HIV-positive health workers were hiding their HIV status from their colleagues in fear of being stigmatised, (Dieleman et al, 2007). Experienced and perceived stigma and discrimination revealed by the studies have severe influence on people living with HIV/AIDS’ access to health services.
While most of the literature on HIV/AIDS and stigma and access to health services is negative, research also highlights increasing evidence of the value of supportive and de-stigmatising HIV services in some parts of the globe. Brazil has been viewed favourably by people living with HIV/AIDS. The lay people reported supportive inclusive structural systems that create healthy environments for all. The success story of Brazil’s effective HIV/AIDS and stigma prevention and control is attributed to active participation of different groups in the society and the Brazilian government, (Caltado, 2008). Another success of collective efforts of the lay people and the health structures has been noted in South Africa where most people believe in traditional healing. Aids Activism in South has made a positive significance in HIV/AIDS preventing and treatment by translating and mediating the biomedical approach within local ideological frameworks which are easily understood and acted on by the locals, (Colvin, Robins, 2010).
From the research findings it is clear that collaboration between the lay people and the biomedical approach to healing is essential for successful control of HIV/AIDS and stigma. There is no cure for AIDS but Anti-retrovirals (ARVs) can prolong life by keeping the level of HIV in the body at low levels therefore delaying the process between HIV and AIDS, (Robin, 2009). While ARVs are now readily available in most countries, concerns are mostly centred on the rising numbers of newly infected people. According to the World Bank, 60 million people are living with HIV/AIDS worldwide. Access to treatment has increased dramatically but for every 100 people on treatment, 250 become newly infected, (www.worldbank.org/EOL81VLA20 ). For this reason, pressure in now rising on the effectiveness of only relying on the biomedical approach as a concept of health and healing HIV/AIDS. Diseases such as HIV/AIDS need to be tackled using both the biomedical approach and the lay perspective for prevention and treatment to be effective.
The shortfall of the biomedical approach to treatment lies on its focus that is restricted to the physical illness of an individual’s body and the scientific understanding of disease therefore making the approach heavily based on pharmacology. While pharmacology is beneficial in the treatment and prevention of HIV/AIDS, it benefits the pharmaceutical industry which has also been critiqued as hindering the progress on controlling HIV/AIDS. Pharmacology further promotes the privilege of the biomedical model which may be inappropriate to the communities and create feelings of helplessness and vulnerability. This may contribute to the undermining of alternative approaches to treatment and prevention, (Global Health Watch, 2008, Rowden, 2009, Farmer, 1999). Such interventions are not successful in nations who believe in indigenous forms of healing, for example the dependency on traditional healing in Africa.
The lay approaches to healing are effective because they are embedded within local social and cultural structures, but as with HIV/AIDS care, this cannot be confirmed as true. Unlike in the biomedical approach, indigenous approaches seek to heal the whole person by linking the illness with the person’s social and economic background. In South Africa, despite people heavily relying on traditional healing approaches, the HIV prevalence continued to rise. Significance towards effective control of the epidemic has been noted with the increase in accessibility of ARV’s, (Colvin, 2009). In the UNAIDS report on global AIDS epidemic 2010, in 7 countries, five of them in Eastern Europe and Central Asia, HIV incidences increased by more than 25% between 2001 and 2009. Sub Saharan Africa, although still remaining the most highly affected by the epidemic, figures either stabilised or showed signs of decline owing to positive behaviour due to increased services that are embedded in local culture. The report affirms that stigma and discrimination, lack of access to services and bad laws can make the epidemic worse, (www.unaids.org/globalreport/Global_report.htm). The attribute to increased incidences in Europe and Central Asia could be on the countries’ reliability only on the biomedical model of healing.
Baum, (2008) asserts that community level mobilisation where there is partnership between the lay people and structures is the effective way of combating HIV/AIDS and stigma. Active participation of lay people will not only promote individual level responses to dealing with the stigma, access to care and preventing of HIV/AIDS but could also go a long way in improving global public health, (Parker and Aggleton, 2003). Improving health care services and making them accessible to people living with HIV/AIDS without fear of being stigmatised, educating health care professionals about the impact of stigma on patients and policies that encourage inclusion of people living with HIV/AIDS in decisions that affect their lives are some of the key factors of effectively tackling the epidemic, (Farmer, 1990:90).
Advocacy is another way lay people engaged to improve the relationship between health structures and people living HIV/AIDS. The Greater Involvement of People Living with HIV/AIDS, (GIPA), formally adopted as a principle at an AIDS Summit in 1994 emphasises the need for involvement of people living with HIV/AIDS at all levels in the fight against the disease. According to UNAIDS, people living with HIV/AIDS understand their situation better therefore their voices could be heard well if their needs were presented by people in the same situation, (www.unaids.org). In the Zambia study, with supportive structures, the professionals living with HIV/AIDS are in a better position to advocate for people accessing services. Baum, (2008:550) claims that advocacy involving public health practitioners is an effective way of influencing structural barriers in public health.
Both the biomedical and lay perspective approaches to health, healing and prevention of HIV/AIDS and stigma have both benefits and limitations. There is therefore the need for holistic approaches that collaborates both models for HIV/AIDS and stigma interventions to be effective. HIV/AIDS has claimed a lot of lives and continues to claim more; through collective action of the societies and the national structures the epidemic could be controlled.