HIV Infection and AIDS: The Pinnacle of Stigma and Victim Blaming
Illness Experience and Health Care
’Although stigma is considered a major barrier to effective responses to the HIV/AIDS epidemic, stigma reduction efforts are relegated to the bottom of AIDS programme priorities.’
Mahajan et al. (2008: S67)
In this chapter, we consider the most highly stigmatized conditions of modern times, HIV-seropositivity and AIDS. We describe the nature and causes of the illness, the main risk factors and at-risk groups. We discuss the psychosocial issues of people living with HIV infection/AIDS and of people caring for someone with the condition, and interventions. We also discuss stigmatization from the viewpoint of the socio-cognitive and structural approaches. Research on different types of intervention for different population groups and the results of recent meta-analyses of interventions for stigma reduction indicate limited impact, leaving major challenges for the care of people living with HIV and AIDS.
What are HIV Infection and AIDS?
HIV infection and AIDS are a worldwide pandemic that has infected around 60 million people and has become the fourth largest killer in the world. There are estimated to be around 2 million new cases each year and about 1 million deaths annually from AIDS (acquired immune deficiency syndrome). HIV (human immunodeficiency virus) is a retrovirus that infects and colonizes cells in the immune system and the central nervous system (T-helper and monocyte macrophage cells). Initial flu-like symptoms are followed by a quiescent, asymptomatic period (lasting years) during which the immune system battles the virus. Eventually, the virus compromises the immune system and the individual becomes symptomatic. The immune system is overwhelmed and the individual becomes vulnerable to opportunistic diseases, signifying the development of AIDS and, eventually, likely resulting in death.
An HIV particle is around 100—150 billionths of a metre in diameter, one-seventieth the size of a human CD4+ white blood cell. HIV particles are coated with fatty material known as the viral envelope or membrane; 72 spikes, formed from the proteins gp120 and gp41, project out of the membrane. Below the viral envelope is the matrix layer, made from protein p17. The core is usually bullet-shaped and made from the protein p24. Inside the core there are three enzymes, called reverse transcriptase, integrase and protease, together with HIV’s genetic material, consisting of two identical strands of ribonucleic acid (RNA).
Figure 23.1 The human immunodeficiency virus
Scanning electron micrograph of HIV-1 (in light grey) budding from cultured lymphocyte. Multiple round bumps on cell surface represent sites of assembly and budding of virions
Source: Centers for Disease Control and Prevention (2010)
Incidence and Prevalence
HIV infection rates vary across different regions. By the end of 2014, an estimated 36.9 million people were living with HIV worldwide, an increase of 24% since 2001. The number of deaths peaked in 2004 and since then have declined slightly. This was the result of the continued large number of new HIV infections and significant expansion of access to combination antiretroviral therapy (cART), which has helped to reduce AIDS-related deaths. Part of the large number of new infections can be attributed to increased access to testing. An estimated 34 million people worldwide have died of AIDS-related illnesses since the beginning of the epidemic, with tuberculosis (TB) being the most common cause of death among people living with HIV.
The number of people with HIV has risen in every region of the world in the past decade. In 2015, the global prevalence of HIV infection was 0.8%. The vast majority of this number live in low- and middle-income countries. In the same year, 1.1 million people died of AIDS-related illnesses (UNAIDS, 2016). Since the start of the epidemic, an estimated 78 million people have become infected with HIV and 35 million people have died of AIDS-related illnesses. An estimated 25.5 million people living with HIV live in sub-Saharan Africa. The vast majority (an estimated 19 million) live in east and southern Africa, which saw 46% of new HIV infections globally in 2015. Around 40% of all people living with HIV do not know that they have the virus (Figure 23.2).
Figure 23.2 Numbers of people newly infected with HIV and numbers dying from AIDS-related causes globally
Source: UNAIDS, 2016. Public domain
Unprotected sexual intercourse is commonplace in many regions, which creates a health burden from people with HIV infection. The figures for developing countries are high, and the high cost of medicines is prohibiting the most effective forms of treatment. For example, in South Africa, where most HIV care is provided on an outpatient basis, hospitals continue to treat serious HIV-related admissions. This inpatient treatment is relatively resource-intensive and expensive. The three most common reasons for admission are tuberculosis and other mycobacterial infections (18%), cardiovascular disorders (12%) and bacterial infections (12%) (Long et al., 2016). African herbal medicines are often used to treat people living with HIV infection and their efficacy is non-existent (Mills et al., 2005).
In 1996, the introduction of combination antiretroviral therapy (cART), also referred to as ’ART’ or ’HAART’, redefined the illness and improved the outlook for infected individuals. cART refers to the use of combinations of antiretroviral drugs with different mechanisms of action to treat HIV. cART is the treatment of choice for HIV or AIDS, and has to be taken every day for the rest of a person’s life. The aim of antiretroviral treatment is to keep the amount of HIV in the body at a low level. This stops the weakening of the immune system and allows it to recover from any damage that HIV may have caused. However, antiretrovirals do not eliminate the virus, they only suppress it, and currently only four in ten who need the treatment actually receive it. HIV persistence eventually causes disease in all infected persons (Sleasman and Goodenow, 2003).
cART was given to 13.5 million people from low- and middle-income countries in 2015. The number of people becoming infected with HIV continues to fall, but more rapidly in some countries than others. HIV rates have fallen by 50% or more in 26 countries since 2001. There has been a significant reduction in areas such as the Caribbean and among newborn babies. However, there has also been a substantial increase in regions such as the Middle East and North Africa, and in Eastern Europe and Central Asia. Denial has been a factor in reducing access to cART in South Africa, and access to cART in African countries, India and China is still far below optimum levels (Figure 23.3).
Figure 23.3 Estimated numbers of people receiving cART and percentage coverage globally
Source: UNAIDS (2016). Public domain
One concern has been that, following the arrival of cART, people at risk might increase the already high rate of unprotected sex. This phenomenon of ’risk compensation’ has been observed in a variety of situations where new protective measures are introduced, such as the wearing of safety helmets by cyclists (Gamble and Walker, 2016).
Crepaz et al. (2004) conducted meta-analyses to determine whether (1) being treated with cART, (2) having an undetectable viral load, or (3) holding specific beliefs about cART and viral load were associated with increased likelihood of engaging in unprotected sex. Twenty-five English-language studies were screened and information from eligible studies was abstracted independently by pairs of reviewers using a standardized spreadsheet. The findings suggested that the prevalence of unprotected sex was not higher among persons with the human immunodeficiency virus (HIV) receiving cART than among those not receiving cART, or among HIV-positive persons with an undetectable viral load versus those with a detectable viral load. However, the prevalence of unprotected sex was elevated by 82% in HIV-positive, HIV-negative and unknown serostatus persons who believed that receiving cART or having an undetectable viral load protects against transmitting HIV, or who had reduced concerns about engaging in unsafe sex given the availability of cART. The authors concluded that ’people’s beliefs about cART and viral load may promote unprotected sex and may be amenable to change through prevention messages’ (Crepaz et al., 2004: 224).
Adherence to cART is necessary for the prevention of AIDS and adherence rates are strongly related to the degree of protection afforded (Bangsberg et al., 2001). Medication side effects are the most significant deterrent to adherent use of any medicine, including cART. Ammassari et al. (2001) examined the expected association between non-adherence and self-reported side effects of the medication: 358 persons were enrolled, of whom 22% reported non-adherence and were 51% less likely to have HIV RNA <500 copies/ml.1 Frequency of moderate/severe symptoms or medication side effects in non-adherent participants ranged from 3.6% to 30%. On univariate analysis, nausea, anxiety, confusion, vision problems, anorexia, insomnia, taste perversion and abnormal fat distribution were significantly associated with non-adherence. Non-adherent persons had a higher mean overall symptom score and mean medication side effect score when compared with adherent participants. In the multivariate analysis, nausea, anxiety, younger age, unemployment, not recalling the name, colour and timing of drugs, running out of pills between visits and being ’too busy’ were independently associated with non-adherence over the previous three days.
1. A viral load of 500 or fewer HIV RNA copies per mL is considered to be low, while a viral load of 40,000 or more HIV RNA copies per mL is considered high.
Vian et al. (2016) explored the role of motivation in predicting cART adherence in China. They tested whether self-determination theory could predict adherence behaviour among 115 HIV-positive patients. The study formed part of the ’China Adherence through Technology Study’, a randomized controlled trial of an intervention using text reminders and supportive counselling to increase adherence. The treatment had a significant effect on improving adherence, although self-determination theory failed to predict adherence in HIV-positive patients.
Houston et al. (2016) examined the role of depressive symptoms and treatment self-efficacy in cART adherence. Depression is often associated with poor HIV treatment adherence. Using a sample of 84 cART patients with depressive symptoms, they examined whether patients with optimal adherence differed from those with suboptimal adherence in terms of type of depressive symptoms and treatment self-efficacy. There were no significant differences between participants with regard to types of depressive symptom. Patients with high treatment self-efficacy were more likely to report optimal levels of adherence than patients with low self-efficacy.
A high proportion of patients receiving cART show varying degrees of neuropsychological impairment. Heaton et al. (2010) tested 1,555 HIV-infected adults from six university clinics across the USA using neuromedical, psychiatric and neuropsychological examinations. Of these, 52% had neuropsychological impairment, with higher rates in groups with greater comorbidity burden.
One strategy in research on HIV prevention is to focus on risk factors and at-risk groups.
Risk Factors and At-risk Groups
Risk factors for HIV infection are: unprotected intercourse, injection drug use, sexually transmitted infections (STIs), blood exposure, mother—foetus transmission, mother—infant childbirth transmission and breastfeeding transmission. For nearly all of these risks, stigmatization and victim-blaming have been as damaging to those affected as the disease process itself. The reasons are not difficult to comprehend, as contemporary society becomes ever more divisive with privileged elites controlling ever more power and wealth while the ’99 percent’ at the bottom of the pyramid are feeling increasingly alienated and dispossessed. These trends have been reviewed in Amnesty International’s 2017 annual report, The State of the World’s Human Rights, which documented ’grave violations of human rights’ in 159 countries in 2016. This report ’documents the state of human rights in 159 countries and territories during 2016. For millions, 2016 was a year of unrelenting misery and fear, as governments and armed groups abused human rights in a multitude of ways. Large numbers of people continued to flee conflict and repression in many regions of the world. Among other pervasive issues, this report documents continuing torture and other ill-treatment, the failure to uphold sexual and reproductive rights, government surveillance, and a culture of impunity for past crimes.’ (Amnesty International, 2016: ix). In a world with increasing violations of human rights, it is to be expected that hate, derision and stigma will tend become more extreme than ever.
The classic formulation of stigma is that of Erving Goffman (1963: 3), wherein stigma is ’an attribute that is deeply discrediting’ and that reduces the bearer ’from a whole and usual person to a tainted, discounted one’. Society stigmatizes on the basis of what is considered as ’difference’ or ’deviance’, and results in a ’spoiled identity’. The label of ’deviance’ requires stigmatized individuals to view themselves as discredited or undesirable. Goffman’s theorization of stigma was extended by theorizing the origins of stigma in human cognition. This socio-cognitive, individualistic framework constrained the concept of H/A stigma (the stigmatization of people living with HIV and AIDS) to an examination of how people living with HIV infection or AIDS (PLHA) are labelled and stereotyped by the public, based on their incorrect beliefs and attitudes, and/or a focus on the specific emotions and cognition of PLHA (Majahan et al., 2008). This approach limited H/A stigma reduction interventions to strategies aiming to increase empathy and altruism towards as well as reduce the anxiety and fear of PLHA among the general population, or individual-based interventions to assist PLHA to cope with perceived or experienced stigma. In their review, Mahajan et al. (2008) observed that the great majority of articles on H/A stigma measurement and reduction interventions either implicitly or explicitly utilized a socio-cognitive conception of stigma. These approaches exclude consideration of structural aspects of stigma — the dynamic social/economic/political processes that simultaneously produce and intensify stigma and discrimination.
Adopting a structural approach, Parker and Aggleton (2003) conceptualized stigmatization as intimately linked to the reproduction of social difference. They suggested that ’stigma feeds upon, strengthens and reproduces existing inequalities of class, race, gender and sexuality’ (Parker and Aggleton, 2003: 13). They highlighted the limitations of individualistic modes of stigma alleviation and called for a new approach wherein the resistance of stigmatized individuals and communities can be a resource for social change. Stigmatization, they argued, is linked with the workings of social inequality by its capacity to cause some groups to be devalued and other groups to feel that they are superior. In viewing stigma at the intersection of culture, power and difference, Parker and Aggleton argued that stigmatization reinforces the constitution of the prevailing social order. Stigma, in this formulation, is a scaffolding of power and preserves the status quo. For this reason, one can understand why the main approach to reducing stigma is akin to tinkering rather than to target root-and-branch change of the causal processes.
Following Parker and Aggleton, a review by Mahajan et al. (2008) supported the idea that stigma is a structural issue wherein power differentials are reproduced between different societal groups. The framework for the production of stigmatization proposed by Mahajan et al. is shown in Figure 23.4. The Mahajan et al. framework shows the production of stigma across a number of domains at both individual and structural levels. We have a stepped pyramid from the bottom to the pinnacle of stigmatization.
Figure 23.4 Framework for stigma
Starting from the foundations of power at the foot of the pyramid, there is the structural violence of racism, sexism and poverty along with pre-existing stigma against groups that are seen as deviant, such as commercial sex workers, injecting drug users and men who have sex with men (MSM). Going up a level, people are labelled on the basis of HIV status or their risk of infection and insulted with terms like ’scum’ or ’dirty’ or ’queer’. Up another level and there is an ’othering’ of ’them’ versus ’us’, a crucial step towards full-blown stigmatization. Up to the pinnacle, and we observe discriminating and devaluing behaviours which make the covert processes of the lower levels completely overt, along with self-imposed discrimination (non-presentation at clinics, not offered a seat on a bus, fired by employer for absenteeism).
In spite of decades of health education, there is still widespread ignorance about STIs and HIV. The National AIDS Trust (2011) reported that one in five people still did not realize that HIV infection can be passed on through sex without a condom between a man and a woman, and worryingly, knowledge of this fact had fallen by 11% in the previous decade. One in ten people incorrectly believed HIV infection can be transmitted through impossible routes, such as kissing (9%) and spitting (10%), and these figures had doubled since 2007 (from 4% and 5%, respectively). In the field of HIV/AIDS, health education has been an expensive but disastrous failure. We turn to consider reasons why this might be the case by considering different population groups who are at risk of HIV infection.
Routinely offering HIV testing to pregnant women during their first antenatal visit and retesting them in the third trimester and during breastfeeding is the gold standard in high-incidence settings (World Health Organization, 2015a). Some countries have inadequate health care infrastructure, poor linkages between HIV and maternal and child health services, and lack of awareness of the importance of routinely offering HIV testing, which prevents many women living with HIV from being reached. Traditional beliefs, cultural practices, stigma and discrimination, lack of confidentiality within health care settings and transportation challenges also hinder access and contribute to the under-utilization of services (Njau et al., 2014).
Pregnant women may avoid medical help due to fear of stigma, discrimination and violence when disclosing their HIV status. Going against community norms of feeding leads to questions about a mother’s HIV status, unwanted disclosure, and fear of stigma from partner, family and the community (Mahajan et al., 2008). Community-level education targeting pregnant women, community leaders and people of childbearing age is critical to improving acceptability of services and diminishing the effects of stigma.
Antiretroviral medicines need to be provided during pregnancy and delivery to minimize the risk of transmission to infants. HIV-negative new mothers at high risk of HIV are also insufficiently tested while they are breastfeeding. As a result, infants are exposed unknowingly to HIV during breastfeeding, with half of all mother-to-child HIV transmissions occurring during this period (World Health Organization, 2015a).
Many women living with HIV are not aware that they need to remain in treatment while breastfeeding, and opportunities to reinforce the adherence messages and resupply women with medication are fewer once the baby is born, as women reduce their contact with the health system. Even when the baby is immunized, it may not be the mother who makes the visit to the clinic, relying instead on an older sibling or a grandparent while the mother works. Side effects from cART and personal perception of wellness can also lead mothers to stop taking their medication (Kim et al., 2016). Insufficient adherence support of breastfeeding women living with HIV has seen postnatal HIV transmissions from mother to child remain higher than 5% in eight of 21 high-priority countries (UNAIDS, 2016).
Although AIDS-related deaths among children have reduced dramatically in recent years, the vast majority of deaths still occur during the first five years of life. Early HIV diagnosis and early antiretroviral therapy greatly reduce infant mortality and HIV progression. Without antiretroviral therapy, 50% of children living with HIV die before their second birthday. Tuberculosis (TB) is a common killer. In 2015, about 40,000 children living with HIV died from TB. Coverage of early infant diagnosis remains low, however: only four of 21 priority countries — Lesotho, South Africa, Swaziland and Zimbabwe — provided HIV testing to more than half the infants exposed to HIV within their first eight weeks (UNAIDS, 2016).
TB is common among PLHA. Among pregnant women living with HIV, TB is associated with higher maternal and infant mortality. Maternal TB is also independently associated with a 2.5-times increased risk of HIV transmission to exposed infants. All pregnant women and new mothers living with HIV should be screened for TB symptoms, and children living with HIV should be fully investigated if they have signs or symptoms suggestive of TB (UNAIDS, 2016).
The majority of students have multiple sex partners and report inconsistent condom use (Lewis et al., 2009). The American College Health Association (2005) found 52% of college students had had vaginal intercourse at least once in the past 30 days with 63% reporting inconsistent condom use. Negative psychological consequences, guilt and reduced self-esteem tend to follow unplanned sexual activity (Paul et al., 2000). Ma et al. (2009) investigated behavioural and psychosocial predictors of condom use among students in eastern China using a questionnaire survey. Among 1,850 sexually active participants, frequent condom use was reported by about only 40% of men and women. Given the strict laws on procreation in China, these data illustrate the low adoption of condom use among students in Eastern as well as Western countries.
A non-random survey involving 1,566 young people from 99 countries by the student organization AIESEC International (2009) reported that approximately 50% of the world’s teenagers admit to being dangerously ignorant about risks of HIV infection — and many do not use condoms. According to the survey, one in three youngsters still did not believe that using protection stops the spread of STIs. Yet half of the world’s new HIV infections are among 15- to 24-year-olds — 57% of youngsters in south-east Asia admit to knowing little about HIV infection or AIDS as compared to 74.3% of young Africans, with sub-Saharan Africa having the world’s highest AIDS rate (AIESEC International, 2009).
Sexual risk taking has also been associated with poorer academic performance. Poor academic performance at high school predicts risky sexual behaviour after high school (Bailey et al., 2008). Bogart et al. (2006a) found that poor grades in high school predicted health risk behaviour in adulthood, including high-risk sexual behaviour. The reasons for the association between academic performance and sexual risk behaviour remains unclear. A possible mediator would be alcohol and drug use.
Men who have Sex with Men
Men who have sex with men (MSM) have been a focus for much research. AIDS prevention among MSM has overwhelmingly focused on sexual risk alone. Stall et al. (2003) measured the extent to which psychosocial health problems have an additive effect on increasing HIV risk among MSM. They conducted a cross-sectional household probability telephone sample of MSM in Chicago, Los Angeles, New York and San Francisco. Stall et al. measured polydrug use as use of three or more recreational drugs (e.g., marijuana, cocaine, crack cocaine, heroin, hallucinogens, inhalants, amphetamines, methamphetamine, MDMA [’ecstasy’], barbiturates or tranquilizers and painkillers) in the past six months. They also used the Center for Epidemiological Studies—Depression scale to score levels of depression, with scores greater than 22 indicating depression. In addition, they measured partner violence as the experience of any form of violence, whether symbolic, physical or sexual, in the past five years with a primary partner, and also childhood sexual abuse as the experience of being ’forced or frightened by someone into doing something sexually’ with a partner more than 10 years older than the respondent when the respondent was aged 16 years or younger. Psychosocial health problems were found to be highly intercorrelated among urban MSM. Greater numbers of health problems were positively associated with high-risk sexual behaviour and HIV infection.
Other studies have focused upon how MSM may attempt to reduce HIV risk by adapting condom use, partner selection or sexual position to the partner’s HIV serostatus. This practice is known as ’serosorting’. Vallabhaneni et al. (2012) assessed the association of serosorting practices with HIV acquisition in 12,277 US participants, with 663 HIV-positive conversions. No unprotected anal intercourse (UAI) was reported in 47.4% of intervals; UAI with some seroadaptive practices in 31.8%; and UAI with no seroadaptive practices in 20.4%. Vallabhaneni et al. found that serosorting appeared to be protective when compared with UAI without serosorting, but serosorting appeared to be twice as risky as no UAI. Condom use and limiting the number of partners should remain the first-line prevention strategy, but serosorting reduces risk of harm for men at greatest risk.
An important barrier to risk reduction is low literacy. Kalichman et al. (1999) tested the significance of health literacy relative to other predictors of adherence to treatment for HIV infection and AIDS. Kalichman et al. studied a community sample of HIV-seropositive men and women taking a triple-drug combination of antiretroviral therapies for HIV infection; 60% were from ethnic minorities and 73% had been diagnosed with AIDS. The findings showed that education and health literacy were significant predictors of treatment adherence after controlling for age, ethnicity, income, symptoms of HIV infection, substance abuse, social support, emotional distress and attitudes towards primary care providers. They found that people who are low in literacy were more likely to miss treatment doses because of confusion, depression and the desire to cleanse their body than were participants with higher health literacy. The authors concluded:
People of lower literacy may benefit from pictorial displays of their medications, accurate in color and size, with graphic illustration of the instructions including the number of pills to be taken, and at what times. In addition, videotapes tailored to different levels of comprehension may provide a more effective medium than pamphlets and brochures for educating patients about their treatments. Intensive case management and assertive assistance programs may be required for those persons with the greatest difficulty understanding their treatment regimen and the importance of adherence. (Kalichman et al., 1999: 271)
Hittner and Kryzanowski (2010) investigated academic performance, residential status, class rank and gender as predictors of risky sexual behaviour under two different substance use contexts: being ’drunk or high’ and ’not drunk or high’. Results indicated that gender moderated the association between residential status and risky sex, such that males living on-campus engaged in more frequent casual sex than males living off-campus. All studies on sexual behaviour using self-reports tend to find disparities between the males’ and females’ reports in line with gender stereotypes in which it has traditionally been ’macho’ to report plenty of encounters and ’feminine’ to report few, a well-known ’double standard’.
Randrianasolo et al. (2008) studied barriers to the use of diaphragms and implications for woman-controlled prevention of STIs in Madagascar. The researchers approached women seeking care for vaginal discharge at a public health clinic for a semi-structured interview or focus group discussion. Of 46 participating women, 70% reported occasional use of male condoms, while only 14% reported using hormonal contraception. Three barriers to using modern contraceptives were gaps in knowledge, misinformation and negative perceptions, and concern about social opposition from male partners.
A more insidious barrier to risk behaviour reduction is pseudoscience and the associated ’denialism’, the organized, widespread form of denial such as occurred in South Africa and to a lesser extent in other regions, including the USA. Deniers promote the idea that HIV infection is a myth or that HIV treatments are poison. Their position is fuelled by pseudoscience, faulty logic, conspiracy theories, homophobia and racism (Kalichman, 2009). Individuals may refuse to be tested, ignore their diagnoses or reject the treatments that could save their lives based on pseudoscientific misinformation propogated by powerful figures such as President Mbeki in South Africa. Against the consensus of scientific opinion, Mbeki argued that HIV infection was not the cause of AIDS and that antiretroviral (ART) drugs were not useful for patients, and so he declined to accept freely donated nevirapine and grants from the Global Fund. It has been estimated that more than 330,000 lives or approximately 2.2 million person-years were lost because a feasible and timely ART treatment programme was not implemented in South Africa between 2000 and 2005 (Chigwedere et al., 2008).
Inconsistent condom usage and other risk behaviours are not caused only by lack of awareness or knowledge, or optimistic bias (e.g., Chapin, 2001). They can be influenced by misinformation and phony science. Motivational and emotional factors play a very significant role, as do cultural and sub-cultural norms. Explaining and reducing sexual risk taking is a significant challenge. The simplest ’take-home message’ is to use protection at all times.
Living with HIV Infection or AIDS
People living with HIV infection or AIDS (PLHA) face the general stressors of the chronically ill and may face additional stresses unique to HIV infection and AIDS, e.g., additional uncertainty and decision-making due to rapidly changing treatment developments/outlook, infectivity persistence, the imperative for major behaviour change (e.g., sexual behaviour), anticipatory grief and the excessive stigma associated with the condition. The quality of life of PLHA is severely compromised, particularly in the later stages of the disease, due to pain (experienced by 30—90% of PLHA), discomfort and mobility difficulties (e.g., Hughes et al., 2004).
The major stressors encountered by PLHA are summarized in Box 23.1. Different stressors may be experienced at different stages of the illness, with stress peaks at initial diagnosis, onset of symptomology, sudden immune system cell (CD4) count decline, onset of opportunistic infections and diagnosis of AIDS.
Box 23.1 Stressors related to HIV infection and AIDS
· Being tested and receiving test results
· Diagnoses — seropositivity, symptomatic phase and AIDS
· Treatment commencement
· Intermittent symptoms and opportunistic disease
· Emergence of new symptoms
· For children, neurocognitive and emotional developmental problems
· Developing drug resistance and treatment failures
· Co-infections (e.g., hepatitis)
· Further exposure to the virus
· Medication side effects
· Pain, discomfort, sexual difficulties, mobility restrictions and progressive physical deterioration
· Complications from ongoing substance use
· Drug trials and drug holidays
· Enacted H/A stigma (e.g., ostracism and discrimination)
· Disclosure reactions
· Substance use
· Employment changes
· Reduced income
· Loss/lack of health insurance
· Access to treatment
· Rejection and loss of social support
· Felt H/A stigma (internalization, fear, shame, guilt)
· Disclosure decisions
· Reproductive decision-making
· Risk behaviour and decision-making
· Rejection and isolation
· Changing expectations
· Preparing for death
Few conditions have provoked such unprecedented levels of stigma, fear and uncertainty as HIV infection and AIDS, even in the well-informed. These fears are layered on top of pre-existing stigmas and moral judgements associated with particular groups, including gay men, sex workers, drug users and people with mental illnesses, reinforcing existing social inequalities. PLHA have been treated as pariahs, discriminated against, abandoned and ostracized. HIV infection and AIDS have even evoked appeals for mandatory testing and elimination of infected individuals. Stigma can intensify all the stressors and problems of living with the disease and is an obstacle to PLHA fulfilling their human rights and to slowing the progression of HIV infection to AIDS.
The decision to disclose HIV-positive status can be a daunting and multifaceted issue that recurs throughout the course of the disease. Non-disclosure increases the likelihood of infecting others and denies knowledge to previous sexual partners, so represents a major barrier to controlling the pandemic. Non-disclosure also decreases social support and access to services. Disclosure decisions are often conflated with simultaneous disclosure of lifestyle choices (e.g., sexuality, drug use) to family and friends. Disclosure decisions may revert to someone other than the PLHA, particularly regarding children, when family members make decisions, including whether to tell the child of their own serostatus (DeMatteo et al., 2002).
Disclosing an HIV-positive status to intimate partners is of crucial importance in addressing the HIV epidemic, H/A stigma, and the psychological and physical well-being of people living with the condition. Petrak et al. (2001) examined rates and patterns of self-disclosure of HIV serostatus among individuals attending an outpatient HIV clinic in East London. They used a cross-sectional survey design with 95 outpatient HIV clinic attendees who completed a self-report questionnaire examining patterns of disclosure to self-identified significant others, reasons for disclosure and non-disclosure, satisfaction with social support (SSQ6), quality of life, and anxiety and depression (Hospital Anxiety and Depression Scale (HADS); Zigmond and Snaith, 1983). A total of 79 men and 16 women reported a disclosure rate of 68% to self-identified significant others. Five individuals had not disclosed their HIV status to anyone, but 91% had informed their partner. Friends were more frequently informed (79%) than family (53%). Ethnicity and length of time since testing seropositive were significant predictors of disclosure. Frequently reported reasons for non-disclosure were wanting to protect others from distress and fear of discrimination. HIV serostatus rates were highest for partners, followed by friends, and lowest for family members.
Smith et al. (2017a) carried out a qualitative cross-sectional study that aimed to provide a nuanced account of the disclosure process within an intimate partner (IP) relationship. A total of 95 people living with HIV answered a series of open-ended questions enquiring into their last experience of disclosing to an IP. Using thematic analysis, the investigators found that disclosure became a salient issue when the discloser acknowledged their relationship as being meaningful. The decision to tell was
mostly made to build a foundation for the evolving relationship. Once the decision was made, it was enacted via one of two mechanisms (self-initiated or opportunistic) and partners’ reported reactions fell within one of four main reaction types. In the long-term for couples who remained together, disclosure was understood to have brought them closer. However, for both those whose relationships remained intact, and for those whose relationship had since broken down, sexual difficulties associated with being in a sero-discordant partnership pervaded. At a personal level, the experience resulted in increased confidence in living with the diagnosis, and an increased sense of disclosure mastery. (Smith et al., 2017a: 110)
The authors concluded that disclosure is a highly nuanced process. In particular, it was found to be largely characterized by the IP relational context in which it was occurring. The process was found to be largely influenced by the discloser’s subjective experience of the intimate partnership. The findings suggest a need for an intervention that supports couples longitudinally.
Ironson et al. (2002) investigated the relationship between spirituality and religiousness and health outcomes for people living with HIV. Four factors of the Ironson—Woods Spirituality/Religiousness Index were identified: sense of peace, faith in God, religious behaviour and compassionate view of others. Each of the four sub-scales was related to long survival with AIDS. Also, the Ironson—Woods Index was significantly correlated with lower distress, more hope, social support, health behaviours, helping others and lower cortisol levels. In a related study, Ironson et al. (2006) found an increase in religiousness/spirituality in 45% of a sample after HIV diagnosis, which predicted slower disease progression over four years in people living with HIV. The mechanism remains unclear, but it could be that those following a religious practice have higher adherence to medication.
Adaptation to HIV infection and AIDS
Post-cART, AIDS has been defined as an incurable, chronic and life-threatening illness. Coping with HIV infection and AIDS is a complex, multi-dimensional phenomenon that is influenced by personality as well as contextual and cultural factors. It involves a process of continual adjustment in response to stress, challenging life events, and personal and interpersonal issues. Multiple stressors and negative psychological outcomes are deterrents to successful adjustment. Adaptation is also influenced by health behaviours, which have a bidirectional influence on mood states (e.g., depressed people drink more, which increases depression, resulting in increased alcohol consumption as well as increased risky sex behaviours). An increased number of symptoms and onset of the symptomatic stage are key predictors of adjustment. Factors associated with good psychosocial adjustment to HIV infection and AIDS include healthy self-care behaviours (medical care, healthy lifestyle, awareness and ability to take action to meet personal needs), a sense of connectedness (one close confidante, openness, disclosure), a sense of meaning and purpose (cognitive appraisal that there is something to live for, optimistic attitude) and maintaining perspective (realistic acceptance, e.g., not viewing the condition as imminently fatal). Adaptive coping skills have consistently been associated with increased self-esteem, increased self-efficacy and perceived control. They include active behavioural strategies (planning, help and information seeking, relaxation exercises) and cognitive strategies (cognitive reframing, finding meaning, emotion work, problem solving). Problem-focused coping appears more appropriate for situations that cannot be changed, whereas emotion-focused coping is more suitable where change is not possible (Park et al., 2001).
Adaptive coping strategies along with good social support can mediate the negative effects of stress. Adaptive coping strategies have also been associated with health-related benefits. Finding meaning in the experience of HIV infection and AIDS has been associated with maintaining immune system cell (CD4) levels, optimism with higher CD4 counts, medication adherence and lower distress, and perceived control, problem-focused coping and social support associated with longer survival. Adaptive and maladaptive coping strategies are not mutually exclusive, co-occuring or changing depending on context. Maladaptive coping strategies have been associated with poor adjustment, including lower fighting spirit, higher hopelessness, anxious preoccupation and a fatalistic attitude. Passive and avoidant coping, psychological inhibition and withdrawal have been associated with increased risk behaviours, distress and more rapid disease progression (Stein and Rotheram-Borus, 2004).
Another factor associated with successful adaptation is social support. Zuckerman and Antoni (1995) reported that seven social support criteria were especially related to optimal adjustment to HIV infection and AIDS: feeling supported, satisfaction with support received, perceived helpfulness of peers, total perceived availability and individual dimensions of support, absence of social conflict, greater involvement of AIDS-related community activities and greater number of close friends. These criteria were related to adaptive coping strategies, increased self-esteem and sense of well-being, as well as decreased depression, hopelessness, anxiety, mood disturbances, dysphoria and risk behaviour. Parental adaptation and support may be the most important influences on the adaptation of children and adolescent PLHA.
The internet has had a massive influence on public perception and awareness of HIV infection and AIDS, not all entirely positive. Kalichman et al. (2003) surveyed 147 HIV-positive persons to examine factors associated with internet use. The authors found that internet use was associated with HIV disease knowledge, active coping, information-seeking coping and social support among persons who were using the internet. These preliminary findings suggest an association between using the internet for health-related information and health benefits among people living with HIV infection and AIDS, supporting the development of interventions to close the digital divide in the care of PLHA.
Testing for HIV infection
HIV testing has been available from the beginning of the epidemic, but a significant proportion of people at risk have not presented themselves for testing. HIV testing is a necessary step for receiving HIV treatment and care among those who are HIV-positive. Early diagnosis and access to treatment reduce the likelihood of onward transmission, improve the response to cART, and reduce mortality and morbidity (Evangeli et al., 2016). However, many people living with HIV are unaware of their status. The World Health Organization estimates that less than half of those infected with HIV have been diagnosed (World Health Organization, 2014d).
It is important to learn why this might be the case. Bond et al. (2005) determined the overall prevalence of HIV testing within heterosexual men and women at high risk for HIV infection, and analysed the gender-specific individual- and structural-level barriers and facilitators to testing. Data consisted of 1,643 interviews in Philadelphia between 1999 and 2000. Of the participants, 79.4% had ever taken an HIV test, with women being significantly more likely to have been tested than men. Among the individual-level factors they examined, very few, including sexual and drug-using risk behaviours, were significantly associated with an increased likelihood of ever being tested for HIV. Structural factors, such as access to health care, were important correlates of HIV testing for both women and men.
Lorenc et al. (2011) systematically reviewed qualitative evidence concerning the views and attitudes of MSM concerning HIV testing in high-income countries since 1996. The authors’ findings correlate with many other studies discussed in this chapter:
The uncertainty of unknown HIV status is an important motive for testing; however, denial is also a common response to uncertainty. Fear of the consequences of a positive HIV test is widespread and may take several forms. A sense of responsibility towards oneself or one’s partner may be a motive for testing. The perception of stigma, from other gay men or from the wider culture, is a barrier to testing. Gay and other MSM have clear preferences regarding testing services, particularly for those that are community based, include non-judgemental and gay-positive service providers, and offer a high degree of confidentiality. (Lorenc et al., 2011: 834)
De Wet and Kagee (2016) investigated perceived barriers and facilitators to HIV testing in South African communities with 15 people seeking HIV testing, to understand the factors that influenced their seeking an HIV test. Reasons given in favour of testing included having unprotected sex, availability of social support if testing HIV positive and modelling test-seeking behaviour to others. Reasons against testing included fear of testing HIV positive, the possibility of receiving treatment too late, HIV-related stigma and long distances to testing sites. Participants discussed ways of increasing uptake of HIV testing, such as workplace testing, the media, and cultural rituals such as male circumcision.
Evangeli et al. (2016) systematically reviewed quantitative studies on psychological (cognitive and affective) correlates of HIV testing. A total of 62 studies were included, of which 56 were cross-sectional. Most studies measured lifetime testing. The most commonly measured psychological variables were HIV knowledge, risk perception and H/A stigma. The relationships between HIV knowledge and testing and between HIV risk perception and testing were both positive and significant but with small effects. Other variables, with a majority of studies showing a relationship with HIV testing, included perceived testing benefits, testing fear, perceived behavioural control/self-efficacy, knowledge of testing sites, prejudiced attitudes towards people living with HIV, and knowing someone with HIV.
Pellowski and Kalichman (2016) explored health behaviour predictors of medication adherence among low health literacy people living with HIV/AIDS. For these individuals, medication taking needs to be simplified as much as possible by integrating medication adherence into routine health behaviours. Adults living with HIV completed intake measures and three months of unannounced pill counts. Reported diet and exercise behaviours at intake predicted higher medication adherence, over and above other known predictors of medication adherence such as HIV symptoms, depression, social support and stress. The results support the idea of integrating medication management into routine health practices to improve adherence.
Stigma of Living with HIV Infection
From a psychological perspective, HIV stigma is composed of three distinct conceptual dimensions: ’internalized’, ’anticipated’ and ’enacted’ stigma (Earnshaw et al., 2013). ’Internalized’ stigma is the adoption of negative beliefs associated with having HIV about oneself and is the most common reaction to being diagnosed with HIV. ’Anticipated’ HIV stigma is the expectancy of discrimination due to having HIV. ’Enacted’ HIV stigma is the experience of being stereotyped or discriminated against for having HIV. Enacted stigma most closely corresponds to poorer mental health, especially depression (Bogart et al., 2011). Enacted stigma may influence health care utilization, treatment adherence, and the overall health and well-being of PLHA (Chambers, Rueda et al., 2015).
Stigma is a major factor in depression of PLHA. It is established as one of the most common psychiatric comorbidities among persons living with HIV (Nanni et al., 2015). Meta-analysis suggested that the frequency of major depression disorder is almost two times higher among persons living with HIV than their uninfected counterparts (Ciesla and Roberts, 2001). Depression risks increase in parallel to the progression of HIV infection and can lead to poorer HIV-related health outcomes. Hernandez and Kalichman (2017) explored the associations between depression among PLWH, HIV stigma, alcohol use, poorer social support and food insecurity. The study demonstrated a mediation effect of HIV stigma on depression through social support, which is additionally moderated by food insecurity. Hernandez and Kalichman’s (2017) study observed that people who experience HIV stigma have less support than those who report not experiencing HIV stigma, and the less social support reported, the more depression increases. The effect of HIV stigma on depression through social support was also shown to be dependent on and moderated by level of food insecurity wherein poorer food insecurity resulted in decreases in social support and increases in depression. Their model demonstrates the complexity of depression and how recourses, such as social support and food insecurity, can impact and exacerbate depression in PLWH (Figure 23.5).
Figure 23.5 Multiple-mediation model: mediation of enacted stigma on depression through social support and alcohol use
Source: Hernandez and Kalichman (2017)
Studies suggest that fear of stigmatization is especially strong among migrants. This is ’stigma amplification’, which occurs when there is more than one type of difference. For example, Arrey et al. (2015) found very high levels of non-disclosure among sub-Saharan African migrant women living with HIV/AIDS in Belgium. Non-disclosure to their friends and family averaged at a high level of 75—80%.
Owuor et al. (2016) investigated concealment, communication and H/A stigma from the perspectives of HIV-positive immigrant black African men, originally from East Africa, and their partners living in the UK. The data consisted of in-depth interviews involving 23 participants. They found widespread selective concealment of HIV-positive status. A few respondents had come out publicly about their condition. The authors concluded that: ’HIV prevention initiatives should recognise concealment as a vital strategy in managing communication about ones HIV-positive status’ (Owuor et al., 2016: 3079).
Multiplied stigma is evident also among the LBGTQ community. Prevalence of anxiety and mood disorders (AMDs) in HIV-infected individuals in gay and bisexual men (GBM) was studied by Moore et al. (2016) in 557 HIV-infected and 1,325 HIV-uninfected GBM in Sydney, Australia. They observed 300 hospitalizations for AMDs in 15.3% of HIV-infected and 181 in 5.4% of HIV-uninfected participants. Being infected with HIV was associated with a 2.5-fold increase in risk of hospitalization for AMDs.
HIV Prevention Using Pre-Exposure Prophylaxis (PrEP)
Pre-exposure prophylaxis (or PrEP) is when people at very high risk for HIV take HIV medicines daily to lower their chances of getting infected. PrEP can stop HIV from spreading throughout the body. A combination of two HIV medicines (tenofovir and emtricitabine) is approved for daily use as PrEP to help prevent an HIV-negative person from getting HIV from a sexual or injection-drug-using partner who is positive. Studies have shown that PrEP is highly effective for preventing HIV if it is used as prescribed. PrEP is much less effective when it is not taken consistently (CDC, 2016).
Evidence for the effectiveness of PrEP in gay men comes from the PROUD and Ipergay studies (Molina et al., 2015; McCormack et al., 2016; National AIDS Trust, 2016). Both studies found that PrEP was 86% effective — i.e., it stopped 17 out of every 20 HIV infections that would have happened without PrEP. In the PROUD study, one HIV infection was stopped for every 13 gay men who took PrEP. An African study showed that PrEP was 75% effective (Baeten et al., 2012).
In the USA over 30,000 people are taking PrEP. PrEP is available in the UK, especially for gay men. PrEP is necessary in the UK because while condoms testing and treating HIV-positive people are containing the HIV epidemic, infections in gay men are not decreasing. A recent study showed that compared to other HIV prevention measures, PrEP is most effective (Punyacharoensin et al., 2016). For each individual who acquires HIV, the personal impact is considerable. However, the cost to the NHS is high — one person’s treatment costs around £360,000 over their lifetime (Nakagawa et al., 2015).
A concern is that PrEP could lead gay men to abandon condoms in a form of risk compensation. However, PrEP will most likely be used by people who already have difficulty in consistently using condoms. Another concern is that PrEP could lead to people catching more STIs such as chlamydia and gonorrhoea. Golub et al. (2010) surveyed 180 HIV-negative high-risk MSM in New York City between September 2007 and July 2009. Around 70% of participants reported that they would be likely to use PrEP if it were at least 80% effective in preventing HIV. Of those, over 35% reported that they would be likely to decrease condom use while on PrEP. Behavioural interventions are needed to accompany wide-scale provision of PrEP in high-risk populations.
Interventions for PLHA
MSM are the fastest growing population group receiving a diagnosis of HIV-seropositivity. In 2015 there were 25,000 new cases in the USA, 17,000 of whom were black or Hispanic/Latino. While accounting for just 14% of the US population, blacks represent close to half of all new HIV infections and AIDS deaths every year. By risk group, gay and bisexual men continue to be at greatest risk for HIV — accounting for the majority of all new HIV infections. Black heterosexual women are also a growing group of people diagnosed with HIV seropositivity, with 4,142 new cases in 2015 (CDC, 2017a). HIV rates are becoming higher among both MSM and heterosexual women in many regions of the world (Figure 23.6).
Interventions have been designed for PLHA at different societal levels, including communities, groups and individuals. To the best of our knowledge, there are no documented examples of PLHA interventions at a structural level. Community interventions have been relatively rare. The majority of efforts have been directed at an individual level.
One example of a health promotion intervention that deals with the wider social determinants of health inequalities is Lubek et al.’s (2003, 2014) multi-sectoral participatory action research (PAR) in Cambodia (see Box 23.2). The intervention aims to empower local women who have been placed increasingly at risk using a culturally and gender-sensitive programme, which eventually can be made self-sustaining. This approach succeeds best by facilitating collaboration between grassroots organizations and local and international corporate industries.
Figure 23.6 HIV diagnoses in the USA for the most-affected sub-populations, 2015
Source: CDC (2017a). Public domain
Box 23.2 Case Study: Confronting HIV Infection and Alcohol in Cambodia
In rural Cambodia, where non-literacy rates are as high as 75%, female workers face risks selling beer brands in restaurants. These ’beer girls’ or ’beer promotion women’ are underpaid by about 50%, and are sometimes forced to trade sex for money. Of these women, 20% are HIV-seropositive, quickly die and are replaced by younger girls from the countryside. ’Beer girls’ must wear the uniforms of the international beer brands that they sell in restaurants and beer gardens.
In 2002, ’beer girls’ were set a sales quota of 24 33cl. cans/small bottles per night — each selling at US$1.50 on average, totalling daily beer sales worth $36 or $13,000 annually. In 2004—2005, Heineken and Tiger Beer promotion women were put on fixed salaries of around US$55 per month. This amount is about half the income they need to support their families. One-third of the women support children as single mothers and 90% support rural families. About half became indirect sex workers, exchanging money for sex to supplement their income.
’Beer girls’ also consume unsafe quantities of alcohol when working, drinking over 1.2 litres of beer (about five standard drinks) nightly 27 days a month (Schuster et al., 2006). Condom use following beer drinking is lowered, increasing risk of HIV infections, AIDS and STIs. Averaged over seven years, 20% of the female beer promotion women in Cambodia are seropositive for HIV/AIDS (Lubeck, 2005). It was estimated that in 2005 there were approximately 200,000 people living with HIV infections and AIDS in Cambodia, with 10,000 in Siem Reap.
A clone of the life-prolonging cART costs approximately US$360 per year. The annual wage of US$600—$800 means that cART is not an option for ’beer girls’. Death can follow three months to two years after diagnosis. Médicins Sans Frontières and other NGOs provide free clone cART for a small number of Cambodians with HIV infections and AIDS.
The spread of HIV infections and AIDS is accelerated by sexual tourism, poverty and lack of condom use. HIV sero-positivity rates averaged 32.7% (1995—May 2005) for brothel-based (direct) sex workers. Siem Reap is the largest tourist site in Cambodia and hosted 354,000 people in 2001 and over 1 million in 2004. Many male tourists are ’sexual tourists’. In 2001, 23 brothels were registered in the 100% condom use programme, employing 250 direct sex workers. An additional 350 indirect sex workers were ’beer promotion women’ or worked as massage workers and karaoke singers (Lubek, 2005). Infection patterns reflect a ’bridging’ pattern involving sexual tourists, indirect and direct sex workers, local men, their wives and newborns. Married women, men and young persons are increasingly at risk, with fewer than 10% of the estimated 10,000 persons living with HIV infection or AIDS in Siem Reap in 2006 being given antiretrovirals.
Using participatory action research to promote health interventions
In 2006—2008, the Siem Reap Citizens for Health, Educational and Social Issues (SiRCHESI) organization partnered with three Siem Reap hotels in a hotel apprenticeship programme. This removed women from risky beer-selling jobs, sending them every morning to SiRCHESI’s school to learn English, Khmer reading, health education, social and life skills. New advocacy, political and policy-formation skills and activism include trade union activities for beer sellers, meetings with government legislators, supplying data to ethical shareholders groups, and debating international beer executives in the press and scientific journals. Multiple actions were organized to tackle the issue on a number of different levels:
· workshops training women at risk for HIV infection and AIDS to be peer educators about health and alcohol overuse;
· workshops to prevent the sexual exploitation and trafficking of children;
· company sponsorship of HIV infection-prevention health education;
· fair salaries to enable the women to adequately support their dependents;
· monitoring voluntary HIV testing (serology);
· free antiretroviral therapy (ARVT) for ’promotion girls’ who are HIV positive;
· breathalyser testing in bars;
· changes in community health behaviours and attitudes;
· fundraising through the sale of fair trade souvenirs.
Evaluation of project outcomes showed changes in health-related knowledge, behaviour, self-image and empowerment (Lee et al., 2010). As reflected in this case study, Lubek et al. (2014) demonstrated how community health psychology can help to address critical community health issues by adjusting its research and practices to approaches that are guided by grassroots and locally defined interventions.
Source: Lubek et al. (2014)
Mize et al. (2002) carried out a meta-analysis of the effectiveness of HIV prevention interventions for women. The authors evaluated five ethnic groupings (all ethnicities combined, African-American, white, Hispanic and a mixed ethnicity group) over four time periods (post-test, less than two months after the intervention, 2—3 months after the intervention and 6—24 months after the intervention) on three HIV-related sexuality outcome variables (HIV infection and AIDS knowledge, self-efficacy and sexual risk reduction behaviour). The HIV interventions appeared effective at improving knowledge about HIV infection and AIDS and increasing sexual risk reduction behaviours for all ethnicities, except that the findings for self-efficacy were less consistent. The interventions were less consistently effective for African-American women, for whom significant improvements in feelings of self-efficacy were only seen six months or longer after the intervention.
Interventions for Increased Adherence
Adherence rates for cART tend to be suboptimal. Fogarty et al.’s (2002) review yielded 200 variables associated with adherence to HIV medication regimens falling into four broad categories: regimen characteristics, psychosocial factors, institutional resources and personal attributes. Of the psychosocial factors reported, positive disease and treatment attitudes, good mental health and adjustment to HIV were positively associated with adherence, while perceived negative social climate was negatively associated. Lack of access to institutional resources (financial, institutional, medical) was negatively associated with adherence. Finally, non-adherence was linked to personal attributes of younger age, minority status and history of substance use. Patients’ active involvement in their medical care and treatment decision-making also promotes adherence, while low health literacy is associated with poor adherence.
Many studies have reported that stress accelerates disease processes in a variety of diseases, including HIV. The chronic status of HIV infection and AIDS and the limited accessibility to cART for many people living with HIV infection or AIDS means that psychosocial support interventions are increasingly important. Programmes of pain management, stress management, coping effectiveness training, sleep disorders and exercise promotion have been found to enhance immune system function, medication adherence and adaptive coping, and to decrease anxiety, stress and depression (Chesney et al., 2003). Supportive interventions, especially those that improve function and self-management and maximize independence, represent an essential part of treatment for people living with HIV infection or AIDS.
In cART for the management of HIV infection, stress may increase viral replication, suppress immune response and impede adherence to cART (Riley and Kalichman, 2014). Stressful living conditions caused by poverty and dealing with a chronic life-threatening illness and H/A stigma all can exacerbate chronic stress in HIV-affected populations. Interventions to reduce stress among PLHA have been explored as an adjunct to pharmacotherapy. Scott-Sheldon et al. (2008) reviewed stress management interventions for HIV-positive adults as evaluated in trials from 1989 to 2006. The authors were interested in measuring the impact of stress-management interventions designed to enhance the psychological, immunological and hormonal outcomes among HIV-positive adults. The findings indicated that, in comparison to controls, stress-management interventions reduced anxiety, depression, distress and fatigue, and improved quality of life. However, stress-management interventions did not appear to affect immunological or hormonal processes compared with controls.
Men who have sex with men are increasingly using smartphone apps, such as Grindr, to meet sex partners (Holloway et al., 2014). Casual sex with ’hook-ups’ is often associated with alcohol and drug use. Scott-Sheldon et al. (2013) observed that perceived stress in PLHA was associated with an increase in the frequency of alcohol use (drinking days, intoxication and drinking in shebeens/taverns). They found that stress mediated the association between HIV status and alcohol use.
In a systematic review, Riley and Kalichman (2014) identified 11 studies that have examined mindfulness-based stress reduction (MBSR) as an intervention for HIV-positive populations. The preliminary outcomes supported MBSR to decrease emotional distress, with mixed evidence for impact on disease progression. However, effect sizes were generally small to moderate in magnitude. The number of PLHA who are likely to access such interventions, even if shown to be effective, is likely to be only a tiny proportion of the total number who are at risk.
Interventions for Caregivers
The burden of care for people with HIV infection or AIDS, both formal and informal, is being borne primarily by lay caregivers within the family or community, the majority of whom are women and girls (UNAIDS, 2016). There is some evidence, especially in Africa and Asia, that the least acknowledged caregivers are children (caring for a lone or surviving parent) and that older women, already vulnerable through higher levels of chronic poverty, lack of resources and their own substantial health problems, are disproportionately affected.
Caring involves a broad spectrum of psychological, spiritual, emotional and practical work throughout the course of the illness. It can be a rewarding undertaking from which caregivers derive a sense of purpose and self-esteem, and close bonds can become even stronger. However, the caring literature consistently reports the inherently stressful nature of caring for someone with a chronic illness (e.g., Chesler and Parry, 2001). Many of the stressors and negative psychological outcomes experienced by PLHA equally affect their caregivers. Caring is associated with anxiety, depression, overwork, fatigue, fear of death, decreased libido, helplessness, frustration and grief. While other care domains may be similar (e.g., cancer), the greater dependence of PLHA, and involvement and identification with them, result in increased patient contact and a higher intensity of emotional work, increasing the negative consequences. Neurological and/or cognitive symptoms associated with AIDS (from direct effects, opportunistic diseases or other causes) can make the burden of care especially arduous. The effects of multiple bereavements and the caregivers’ own health problems (including their own HIV-positive status) also increase mental health problems. The circumscribing effects of H/A stigma create barriers to accessing social support and resources for caregivers.
The needs of caregivers are rarely prioritized and ’burnout’ is common. Burnout is defined as emotional exhaustion, depersonalization and a damaged sense of personal accomplishment (e.g., Maslach and Jackson, 1981). Emotional support and stress management can prevent stress, depression and burnout in caregivers if they are lucky enough to access it.
Interventions to Reduce Stigmatization
Throughout history certain diseases have carried significant levels of stigma: leprosy, tuberculosis, cancer, mental illness and many STIs. Stigmatization of people living with HIV and AIDS (H/A stigma) has been a barrier to effective governmental and medical responses to the HIV epidemic. A relatively small number of studies have been published on interventions designed to reduce H/A stigma. Few such interventions and programmes described in the literature have been rigorously evaluated, in part due to the intrinsic difficulties of measuring stigma (Mahajan et al., 2008). Brown et al. (2003) could identify no studies testing national-level interventions to combat H/A stigma. They had expected to find studies on the effect of mass media campaigns on H/A stigma, but if the programmes do exist, they have not been evaluated or documented in the published literature. Mass media programmes could have potential for helping to reduce H/A stigma but they are not being funded. Mahajan et al. (2008) found that the majority of H/A stigma reduction interventions use cognitive behavioural and socio-cognitive models, employing activities such as information dissemination, empathy induction, counselling and cognitive behavioural therapy focused on individuals. They argued that new models for advocacy and social change in response to HIV/AIDS-related stigma should be encouraged.
The Greater Involvement of People Living with HIV (GIPA) has been advocated as a principle for effective social programmes to reduce H/A stigma (UNAIDS, 2007). The GIPA programme aims to reinforce the rights and responsibilities of PLHA, including the right to self-determination and participation in decision-making processes that affect their lives (UNAIDS, 2007). The GIPA principle called for a greater involvement of PLHA at all levels and the creation of supportive political, legal and social environments (UNAIDS, 2007). Public participation of PLHA at community and social levels would not only promote individual-level responses to internalized stigma on the part of PLHA, but could also prove a powerful deterrent to stigmatizing impulses of the general population.
One of the most powerful tools against stigma and discrimination is anti-discrimination legislation. The Equality Act 2010 made certain types of discrimination unlawful in the UK, including discrimination on the basis of HIV status. The Americans with Disabilities Act (ADA) guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services and telecommunications (US Department of Justice, 2016). People with HIV, both symptomatic and asymptomatic, are protected by the ADA. The ADA also protects persons who are discriminated against because they have a record of or are regarded as having HIV, or they have a known association or relationship with an individual who has HIV. The ADA prohibits discrimination by all public employers and all private employers with 15 or more employees. Discrimination against qualified individuals (i.e., an individual who can perform the essential functions of the job with or without reasonable accommodations) is prohibited in all employment practices, including hiring, firing, application procedures, job assignments, reassignments, training, benefits and promotions. Employers must provide reasonable accommodations to the known disability of any qualified individual. A reasonable accommodation is any modification or adjustment to a job, the job application process or the work environment that will enable a qualified applicant or employee with a disability to perform the essential functions of the job, participate in the application process or enjoy the benefits and privileges of employment. Similar legislation was passed in Nigeria in 2015.
Centers for Disease Control and Prevention’s Act against AIDS Campaign
Since 2009 the Centers for Disease Control and Prevention has implemented multi-media campaigns under the umbrella Act Against AIDS (CDC, 2017a). Act Against AIDS is a five-year, $45 million communications campaign designed to refocus national attention on the HIV crisis in the USA. Launched in 2009, CDC’s Act Against AIDS campaign uses TV and radio public service announcements; print, online, airport and transit ads; physician communications; and partnerships with leading non-profit and private sector organizations to reach the general public and populations most at risk with HIV prevention and testing messages. To maximize the reach of the Act Against AIDS campaign, CDC has been working inter-sectorally with a number of public health, media and other partners who distribute campaign messages and materials, broadcast public service announcements and donate advertising space (DeLuca, 2012). Act Against AIDS was designed to reach the populations at greatest risk of HIV infection with information tailored to their needs. Current targeted campaigns focus primarily on African Americans and gay and bisexual men.
One part of Act Against AIDS is the Let’s Stop HIV Together campaign consisting of YouTube video narratives by PLHA about their experiences with the condition. The Let’s Stop HIV Together campaign aims to raise awareness about HIV and its impact on the lives of Americans, and to fight stigma by showing real people with HIV — mothers, fathers, friends, brothers, sisters, sons, daughters, partners, wives, husbands and co-workers.
Another part of the CDC initiative is One Conversation at a Time, a national campaign that aims to encourage Hispanics/Latinos to talk openly about HIV/AIDS with their families, friends, partners and communities. The campaign features Hispanics/Latinos from diverse backgrounds and highlights important facts and messages to prompt open conversations about HIV/AIDS.
Results up to 2013 were published by the CDC as follows: Total impressions (approximate number of times campaign messages have been viewed/heard) to date — 2.1 billion; Outdoor advertising impressions— 413.4 million; News media impressions — 797 million; Donated media value — $10,326,000; Web usage — Black MSM testing campaign drove more than 47,000 users to www.hivtest.cdc.gov (CDC, Campaign, General Awareness, 2013, Act Against AIDS). Some of these numbers are huge, but the ’proof of the pudding’ will be measured in terms of reduced HIV infections in the target groups and reduced discrimination and stigma. It will be impossible to evaluate the impact of Act Against AIDS independently of other factors owing to a host of ecological changes over the duration of the campaign.
One highly stigmatized group in health care settings are people who inject drugs (PWID). Brener et al. (2017) evaluated an online H/A stigma reduction training module targeting health providers working with PWID. A total of 139 participants completed a pre- and post-survey, including attitude items and items depicting hypothetical scenarios and concerns around client behaviours. Participants’ attitudes towards PWID were more positive and they showed fewer concerns about client behaviours after completing the online training module. The long-term impact of this training is unknown and should be evaluated.
1. The long-term impact of interventions to reduce stigma training is unknown and should be evaluated.
2. Innovative approaches of stigma reduction are required at a structural level.
3. The impact of recent anti-stigma legislation requires evaluation.
4. New web-based approaches to stigma reduction need to be developed and evaluated.
1. HIV infection and AIDS are a worldwide pandemic that has infected around 80 million people and has become the fourth largest killer in the world. There are around 2 million new cases each year.
2. HIV (human immunodeficiency virus) is a retrovirus that infects and colonizes cells in the immune system and the central nervous system (T-helper and monocyte macrophage cells). Initial flu-like symptoms are followed by a quiescent, asymptomatic period (lasting years) during which the immune system battles the virus.
3. Gay and bisexual men, particularly young African-American gay and bisexual men, are most affected. Heterosexual women of colour are also a high-risk group.
4. HIV-seropositivity and AIDS are two of the most stigmatized conditions in health care. The majority of interventions to reduce H/A stigma have been at an individual level. Outcomes have generally been modest and short-lasting.
5. The most effective treatment consists of combination antiretroviral therapies (cART) that decrease an individual’s HIV viral load to undetectable levels, reducing associated morbidity and mortality.
6. Pre-exposure prophylaxis (PrEP) provides high-risk individuals with HIV medicines daily to lower their chances of becoming infected.
7. The burden of care for people living with HIV-seropositivity or AIDS, both formal and informal, is being borne primarily by lay caregivers within the family or the community, the majority of whom are women and girls.
8. Caring is associated with anxiety, depression, overwork, fatigue, fear of death, decreased libido, helplessness, frustration and grief. While other care domains may be similar (e.g., cancer), the greater dependence of PLHA results in increased contact and higher intensity emotional work, increasing the negative consequences.
9. A major element of research has been concerned with medication adherence. Of the psychosocial factors reported, positive disease and treatment attitudes, good mental health and adjustment to HIV were positively associated with adherence, while perceived negative social climate was negatively associated.
10. One of the most powerful tools against stigma and discrimination is anti-discrimination legislation. The Equality Act 2010 (UK) and the Americans with Disabilities Act (US) make certain types of discrimination unlawful, including discrimination on the basis of HIV status.