According to Herek and Glunt (1988), HIV/AIDS is a disease epidemic, but also an epidemic of stigma. In the UK, the number of new HIV has been rising each year since the 1990’s. Since the year 2000, there have been more than 3000 new diagnosis of HIV each year, with 6932 people diagnosed in 2003 alone. This is more than double the rate of diagnosis of new infections in 1999 (Aventa, 2005). As the incidence of HIV detection in the population increases, there is also a need to address the social stigma associated with the disease, and its implications for health care access, and well-being, amongst HIV positive individuals. This paper will examine how social stigma affects the lives of individuals with HIV/AIDS and how it influences disclosure within the community and access to health care services. A definition of the problem has been provided by Herek and Mitnick (1996):
AIDS-related stigma (or put more simply, AIDS stigma) refers to prejudice, discounting, discrediting and discrimination directed at people perceived to have AIDS or HIV and at individuals, groups and communities with which they are associated. It persists despite passage of protective legislation and disclosures by public figures that they have AIDS or are infected with HIV (p 1)
While Goffman (1963) has identified stigma as a common component in many chronic illnesses, it represents an integral part of the HIV/AIDS individual’s experience of seeking diagnosis, living with the condition, reporting their condition to others and seeking appropriate health and social care. Being rejected and fearing social rejection have been identified through the research literature as main sources of stress for HIV/AIDS sufferers (Berger, Ferrans and Lashley, 2001). Lee et al (2002) have argued that there are four layers to the stigmatisation of HIV/ AIDS. Firstly, it is a disease associated with blame and self-inflicted behavioural patterns because the primary mode of transmission is sexual behaviour and drug taking. Indeed, public understanding of HIV/AIDS, and sympathy with its victims, is delineated by the source of the infection. There are ‘innocent’ victims that have contracted the disease through blood transfusion, or haemophilia or perinatal transmission, and there are ‘guilty’ sufferers who have contracted the disease as a consequence of sexual behaviour or drug use (Novick, 1997). As Novick (1997) has argued, there is a unique association between HIV/AIDS and already discriminated subgroups; Somehow, the virus could identify and infect certain people with truncated civil rights – gay and bisexual men, injection drug users, African-Americans, Haitans, Hispanics and sex workers. All of these people have been, by tradition and by law, isolated, ostacised or constrained from occupying full citizenship and social equality (p 53). Novick (1997) uses the term multiple stigmata to describe the experience that most AIDS/ HIV sufferers encounter in society. This refers to the fact that HIV/AIDS may not be the only source of stigmatisation and discrimination in a person’s life and it can be piled up five or six deep (p 59) for being a woman, black, on welfare, HIV infected, and an addicted mother. Or, for being a sex worker, HIV infected and a substance abuser (p 59). He argues that the long-term stigmatisation of HIV/AIDS can be linked to social ostracisation, denounciation and criminalisation of the behaviour of minority groups. This is highlighted in the treatment of people that have contracted HIV through sexual behaviour. As Lee et al (2002) argue, transmission of the disease through heterosexual practices between men and women is more socially acceptable than homosexual or bisexual practices.
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The second layer of stigma rests with the fact that at the present time the disease is incurable and potentially fatal, with treatment confined to antiretroviral therapies that may delay the onset, but not prevent, the onset of AIDS. It has been suggested that new treatments and therapies for HIV may reduce this type of stigma (Lee et al, 2002) and it is possible that there is a difference between actual levels of stigma expressed through current views held by the general public, and ‘perceived stigma’ as people infected with HIV feel society to be (Green, 1995). However, research is inconclusive and there maybe a double standard of accepting HIV positive people in general but not accepting them, or services aimed at supporting them, ‘in my back-yard’ (Law and Takahashi, 2000).
The third layer of stigma of HIV/ AIDS is due to its contagiousness, and public fear and misunderstanding about the mode of transmission. The fourth layer of stigma is due to the fact that AIDS in its final stages is often associated with unpleasant physical signs of disease such as profound weight loss, respiratory distress and skin lesions. These signs and symptoms contribute to stigmatisation as a consequence of physical disfigurement. The social penalties associated with a HIV/ AIDS diagnosis are high, and present a particular challenge to health care services aimed at screening for and treating the condition (Lee et al, 2002).
Goffman (1963) has described how stigmatised individuals incorporate and internalise the standards set by society and can discredit, blame or belittle themselves as a consequence of their condition and Novick (1997) argues that, systematic stigmatisation leads to internalised stigmatisation (p 57). According to Sandlelowski, Lambe and Barroso (2004), and based on their interviews with HIV positive women, this process of internalisation leads to cultural views of HIV infection that contributed to their feeling dirty, deadly and deficient (p 124). Chesney and Smith (1999) have shown that the stigma associated with HIV/AIDS is such that it deters people from being tested, and it also prevents people from declaring their positive status to community contacts and also prevents them from seeking appropriate medical care. This can be aggravated by actual, or perceived, stigma by the health professional against patients with HIV/ AIDS. Green and Platt’s (1997) interviews with HIV positive patients revealed that some had experience of negative attitudes or had been refused treatment/ care as a consequence of their HIV status from doctors, nurses and dentists. Furthermore, internalised stigma can be associated with psychosocial symptoms such as depression, that may accelerate the onset of AIDS (Green, 1995). It can be argued that social stigma is a major challenge to health promotion, and can increase the likelihood that individuals will engage in risky behaviours or not take care of themselves (Wenger, Kusseling, Beck and Shapiro, 1994).
Most research studies on stigma have focussed on understanding the perceptions towards HIV/AIDS by non-infected people. However, further research is required that explores the actual experience of living with HIV/AIDS and actual experiences of stigma and prejudice (Lee et al, 2002). In a study of 268 HIV positive men and women, Lee et al (2002) explored the prevalence of internalised stigma, as well as its relationship to psychosocial status. About half of the sample were homosexual or bisexual, and 45.9% were heterosexual. Research participants completed standardised measures of mental health status, health care practices, quality of life, coping and perceived social support. A structured clinical interview was also undertaken. The majority of respondents reported that they were embarrassed by their condition and that it was hard for them to disclose their status to other people. Over 60% of heterosexual respondents had a high level of internalised stigmatisation, and amongst this group there were greater reports of their families not accepting the disease. This group were identified over and above other respondents as being less likely to attend support groups and more concerned about transmission of the disease to others. Furthermore, for all the respondents, regardless of their sexual preference, it was noted that high internalised stigma ratings were associated with greater symptoms of depression, anxiety and a sense of hopelessness. Wenger et al (1994) and Lee et al (2002) argue that internalised stigma contributes to high risk behaviour because such individuals are often reluctant to discuss their status with other people, and may engage in risky practices that would be less common where potential partners had been notified. Furthermore, it can be argued that the heightened anxiety of diagnosis and poorer utilisation of health care and support services by HIV positive individuals with high internalised stigma may reduce opportunities for education about staying well, and reducing the risk of future infection to others. As Lee at al (2002) have found, Although HIV support groups may provide an alternative social network for HIV positive individuals who have been stigmatised by friends and family due to their illness, those individuals who are most ashamed of their infection are the least likely to access the support that is available to them (p 317). The precise features of stigma associated with a diagnosis of HIV/AIDS have been elicited by Berger, Ferrans and Lashley (2004) using their HIV Stigma Scale, which was designed to help the medical and nursing professional understand their patients psychosocial difficulties. This was completed by 207 HIV positive individuals and the scale revealed four stigma factors. The factors were personalised stigma (related to negative reactions from others and fear of rejection), disclosure stigma (related to controlling information and privacy), negative self image and concerns about discrimination against people with HIV more generally. This study found that perceived stigma was linked to depressive symptoms which in turn may have affected treatment compliance and willingness to seek support in the community.
This paper has shown that the relationship between stigma and HIV/AIDS is a complex combination of social/cultural stigma related to how society treats people with the condition, and internalised stigma related to how HIV positive individuals feel about their own condition. Health promotion work aimed at increasing the rate of diagnosis and managing the care of people with HIV/AIDS must address the social and internalised stigma associated with the condition simultaneously. Stigma management within the health and social care system must normalise HIV infection as a chronic disorder like any other, continue to provide balanced education and advocacy in the community, and create support groups led by HIV positive people for HIV positive people and informational control (Goffman, 1963). Further research is required to support evidence based practice by the medical and nursing profession to reduce the effects of stigma on people with HIV and AIDS since the rate of diagnosis is on the increase.
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