This dissertation will outline the major issues surrounding HIV/AIDS infection as it relates to women, with specific reference to women in Zimbabwe and the United Kingdom (UK). It will explore the reasons why women are increasingly at greater risk of infection than males. Underpinned by a feminist analysis of women’s oppression, it will include a discussion of how biological, social, sexual, economic and cultural inequalities contribute to women’s vulnerability. It will also look at the impact of HIV/AIDS on women and how these factors can influence them to seek services. The differences in what is deemed “social work” in terms of both definition and practice as well as the differences in the health systems and the healthcare workers involved in delivering services in both countries will also be explored.
AIDS stands for acquired immunodeficiency syndrome, a disease that makes it difficult for the body to fight off infectious diseases. The human immunodeficiency virus known as HIV causes AIDS by infecting and damaging part of the body’s defences – its lymphocytes – against infection. Lymphocytes are a type of white blood cell in the body’s immune system and are supposed to fight off invading germs. People may be infected (HIV positive) for many years before full AIDS develops, and they may be unaware of their status. HIV can only be passed on if infected blood, semen, vaginal fluids or breast milk gets inside another person’s body. HIV and AIDS can be treated, but there are no vaccines or cures for them (WHO, 2003).
Increasingly, “the face of HIV/AIDS is a woman’s face” (UNAIDS, 2004). AIDS is now the leading cause of death in Sub-Saharan Africa and the fourth-highest cause of death globally (UNAIDS, 2002). AIDS is a profound human tragedy and has been referred to as the “world’s most deadly undeclared war” (Richardson, 1987). Women and girls are especially vulnerable to HIV infection due to a host of biological, social, cultural and economic factors, including women’s entrenched social and economic inequality within sexual relationships and marriage. HIV/AIDS continue their devastating spread, affecting the lives of 16,000 people each day, with women, babies and young people being increasingly affected. The number of people living with HIV/AIDS has now reached almost 40 million globally (UNAIDS and WHO, 2006), and of these an estimated two-thirds live in Sub-Saharan Africa, Zimbabwe included. Zimbabwe is experiencing one of the harshest AIDS epidemics in the world. The HIV prevalence rate in Zimbabwe is among the highest in the world, although recent evidence suggests that prevalence may be starting to decline. In Zimbabwe 1.8 million adults and children are living with HIV/AIDS, with 24.6% of adults infected: women represent 58% of those infected among the 20- to 49-year-old age range. (Consortium on AIDS and International Development, 2006) In a country with such a tense political and social climate, it has been difficult to respond to the crisis. President Robert Mugabe and his government have been widely criticised by the international community, and Zimbabwe has become increasingly isolated, both politically and economically. The country has had to confront a number of severe crises in the past few years, including an unprecedented rise in inflation (in January 2008 it reached 100,000%), a severe cholera epidemic, high rates of unemployment, political violence, and a near-total collapse of the health system (AIDS and HIV Information, 2009). In Britain, HIV prevalence is relatively low and currently stands at 0.2% of the population. Statistics show that at the end of 2008 there were an estimated 88,300 people living with HIV, of whom over a quarter (22,400, or 27%) were unaware of their infection. This compares to the 77,000 people estimated to be living with HIV in 2007, of whom 28% were estimated to be unaware of their HIV infection. Of all diagnoses to the end of 2008, 45% resulted from sex between men and 42% from heterosexual sex, with black Africans representing 35% of newly diagnosed infections (HPA, 2009). According to the Health Protection Agency (2009), there has also been a dramatic increase in the number of women diagnosed with HIV. In the years up to and including 1992, females accounted for 12% of HIV diagnoses, but in 2008 that was 37%. Therefore, as HIV/AIDS is a global pandemic, the eradication of this health issue represents one of humanity’s greatest challenges – one that requires co-operation and comprehensive collaboration between scientific disciplines, governments, social institutions, the media, social work and healthcare professionals, and the general public (IFSW, 2009). Social workers, by virtue of their training, their commitment to human rights, and the fact that they are uniquely placed within a wide variety of health and welfare settings, can play a very effective role in the global effort to address the HIV/AIDS epidemic (IFSW, 2009).
While women are battling for equal rights throughout the international community, the existing power imbalance between men and women renders women particularly vulnerable to contracting HIV. Women’s subordinate position places them at a considerable disadvantage with respect to their fundamental human right to control their own sexuality, and to access prevention, care, treatment, and support services and information. This subordination of women is mainly caused by the socially-constructed relations between men and women – or, in other words, the patriarchal structure which is oppressive to women. (Walby, 1990, cited in Richardson, 2000) defines patriarchy as the “system of social structures and practices that men use to dominate, oppress and exploit women”, thus giving them greater opportunities to access services compared to females. Although the World Health Organization (WHO) and many governments are implementing educational programmes to teach women about protecting their health, traditional and cultural practices continue to perpetuate discrimination against women, in turn forcing women into high-risk situations. Unless proactive human-rights policies are enacted to empower, educate, and protect women with regard to their sexual autonomy, HIV/AIDS will continue to spread at an alarming rate and will have a devastating impact on all aspects of society. Even though the root of women’s vulnerability lies in the imbalance in power between men and women, biological and sexual practices have an important role to play and mean that HIV transmission is unfortunately more efficient in women than in men.
Women are more biologically vulnerable to HIV than men; research has shown that women are at greater risk than men of contracting HIV both from an individual act of intercourse and from each sexual partnership. This “biological sexism” applies not only to HIV but to most other sexually transmitted diseases (Hatcher, et al, 1989). A woman has a 50 per cent chance of acquiring gonorrhoea from an infected male partner while a man has a 25 per cent chance if he has sex with an infected woman (Doyal et al., 1994). This is because the vaginal tissue absorbs fluids more easily, including the sperm, which has a higher concentration of the HIV virus than female vaginal secretions and may remain in the vagina for hours following intercourse, thus increasing women’s vulnerability to infection. Not only are women more vulnerable to STIs than men, but “untreated genital infections, especially genital ulcer disease, syphilis and genital herpes, all predispose to HIV infection” (Doyal, 1994). While STDs are not necessarily gender specific, it is likely that women with STDs will remain undiagnosed and untreated for longer, increasing their risk of infection (Finnegan, et al, 1993). This is largely because women tend to remain symptomless for longer than men (Doyal, 1994). Even though much is known about the transmission of HIV to women through unprotected sex with men, less is known about the manifestations, progression, treatment and care of HIV/AIDS in women. Due to the lack of research we can at best speculate on the reasons for this. One reason may be the failure of medical professionals to pick up on possible symptoms which are often present in women: “…existing diagnostic guidelines pay little attention to symptoms such as thrush, herpes, menstrual problems and cervical cell abnormalities that seem to characterise the early stages of the disease process in many women. Indeed a significant number are diagnosed only during pregnancy or when their child is found to be HIV positive”. (Doyal, 1994, p13) Therefore, if researchers persist in ignoring the biological differences, then the realities of the risks of infection and the disease progression in women will remain unacknowledged. As a consequence of this, women will continue to be diagnosed later than men, which ultimately leads to an earlier death. (Gorst, 2001,) Further research into biological differences and the effects of HIV on women’s bodies is urgently needed.
Traditional and customary practices play a part in the vulnerability of women to HIV infection. Practices such as early marriage and the payment of lobola in marriages make women and girls more vulnerable to HIV infection. Marriages among black women in Zimbabwe include bride wealth “lobola” if the couple is to be socially approved. Bride wealth is increasingly becoming big business in Zimbabwe, with some parents charging as much as US$2,500 plus five or more cattle for an educated girl. (IRIN NEWS, 2009) The insistence on bride wealth as the basis of validating a marriage makes female sexuality a commodity and reduces women to sexual objects, with limited rights and privileges compared to their husbands, who pay in order to marry them, thus leaving them without a say in their relationship. Patriarchal attitudes are also found in Christianity and these have strengthened the traditional customs that men use to control women’s sexuality. (Human Rights Monitor, 2001) For example, Eve’s alleged creation from Adam’s rib has made women occupy a subordinate position in the Church as well as in the family. Women are therefore viewed merely as second-class citizens who were created as an afterthought. This is to say that if God had seen it fit for Adam to stay alone, then Eve would never have been created and hence women would not exist in this world. Such patriarchal attitudes have seen women being forced to be submissive to males. To make matters worse, once Eve was created she wreaked havoc by giving in to the Devil’s temptation and pulling Adam into sin. This portrayal of women as the weaker sex has made men treat women as people who have to be kept under constant supervision. St Paul’s letter to the Colossians is one example of the letters which Zimbabwean men quote as a justification of their control over women. The woman is expected “to submit to her husband” (Colossians 3:18) whilst the husband has to love his wife (Colossians 3:19). Therefore, because of these beliefs, women will remain passive and powerless in relation to sexual health, making them more vulnerable to HIV/AIDS.
Migration or displacement as a result of civil strife, natural disasters, drought, famine and political oppression has a greater impact on women’s vulnerability to HIV infection compared to men. About 75 per cent of all refugees and displaced people are women and children. The political and economic crisis in many African and Asian countries has caused many women to come to the UK in search of safer lives and employment (Freedman, 2003). The World Health Organization (WHO, 2003) states that female immigrant workers are more vulnerable to sexual barter as they try to negotiate for necessary documentation, employment and housing, which further increases their risk of HIV/AIDS infection. In addition, because of the lack of legal documentation these women will experience limited options, receive low status, receive low pay and are often isolated in their work, including marriage, domestic, factory and sex work. These situations place women in vulnerable and powerless positions, with little ability to refuse or negotiate safe sex, thereby increasing their risk to HIV/AIDS. Despite the risks associated with the migration process it is important to recognise the right to ‘freedom of movement and travel irrespective of HIV status’ (ICW 12 Statement and the Barcelona Bill of Rights, 2002). This was a focal point during the Barcelona HIV/AIDS conference in 2002, because the Spanish authorities denied visas to numerous people from the South – many of whom were open about their HIV status. Some countries do have discriminatory policies regarding travel of people living with HIV/AIDS (PLHA) and others are instituting stricter controls. For example, Canada has recently introduced the need for an HIV test for people emigrating to Canada and Australia. Whilst they say it will not affect the final decision it is not clear why they need the information (Tallis, 2002).
Women and men experience poverty differently because of gender inequality: The causes and outcomes of poverty are heavily engendered and yet traditional conceptualisations consistently fail to delineate poverty’s gender dimensions resulting in policies and programmes which fail to improve the lives of poor women and their families (Beneria and Bisnath, 1998). Despite worldwide attention to existing inequalities and the way these violate a socially-just society, there is no society in the world in which women are treated as equals with men (Doyal, 2001). Major inequalities between men and women still exist in many places – from opportunities in education and employment to choices in relationships. Gender and social inequalities make women more vulnerable to HIV infection, especially in societies which afford women a lower status than men. Worldwide, women and girls are disproportionately impacted by poverty, representing 70 per cent of the 1.2 billion people who live in poverty worldwide (Amnesty International, 2005), a phenomenon commonly referred to as the “feminisation of poverty”. Worldwide, women receive an average of 30-40 per cent less pay than men for the same work (Card et al, 2007). This economic inequality may influence women’s ability to control the timing and safety of sexual intercourse. Specifically, economic dependence on men, especially those who are not educated and do not have good jobs, forces women to remain silent about HIV risk issues and to stay with partners who refuse to engage in safe-sex practices. Poverty also leads to greater HIV risk among women by leading them to barter sex for economic gain or survival (Weiss et al, 1996). Commercial sex work is the most well-known way for women to exchange sex for money, food, shelter or other necessities. Most of this sex will be unsafe as women will be at risk of losing economic support from men by insisting on safer sex. Where substance abuse is a factor, the means for obtaining clean needles may be traded for other essentials. Trading or sharing needles is a way to reduce drug-addiction costs. Risk behaviours and disease potential are predictable under such compromised circumstances (Albertyn, 2000, cited in Card, 2007). Educational inequality also contributes to a woman’s HIV risk directly, by making information on HIV/AIDS less accessible to her, and indirectly, by increasing her economic dependence on a male partner. In particular, studies show that more-educated women are more likely to know how to prevent HIV transmission, delay sexual activity, use healthcare services, and take other steps to prevent the spread of HIV (UNIFEM, 2004). Because many cultures value ignorance about sex as a feature of femininity, many young women are prevented by husbands, fathers, or other family members from obtaining information about HIV/AIDS. Others decline to seek such information out of fear for their reputations. Lack of education about the causes, prevention, and treatment of HIV/AIDS will increase these women’s vulnerability to infection. Legal systems and cultural norms in many countries reinforce gender inequality by giving men control over productive resources such as land, through marriage laws that subordinate wives to their husbands and inheritance customs that make males the principal beneficiaries of family property (Baylies, 2000). For example, Zimbabwe has a dual legal system, recognising both common and customary law in marriage. This creates inequalities for many women upon divorce or their husband’s death. Women in customary marriages, especially those who are not educated and who live in rural areas, make up approximately 80% of marriages in Zimbabwe, and are not entitled to the same rights as those married under common law; this means that they are often barred from inheriting property and land, or getting custody of their children, thus making them more vulnerable to male dominance and increasing their risk of getting infected with STIs (Womankind, 2002).
Power inequalities at social, economic, biological, political and cultural levels mean that women continue to be increasingly more at risk from HIV infection. It is therefore critical that social workers and other healthcare professionals make sure that HIV/AIDS prevention and care programmes address the most immediate perceived barriers to accessing HIV/AIDS prevention and care services. Measures could include vocational training, employment, micro-finance programmes, legal support, safe housing and childcare services. Such measures would empower these women to have options and to take voluntary and informed decisions regarding the adoption of safer practices to prevent the transmission of HIV/AIDS (UNODC, 2006). There is also the need for a female-controlled form of protection which women can use to protect themselves, for example microbicides, which women can use without the consent or even the knowledge of their partner, thus enabling them to protect themselves if they are forced to engage in unprotected sex.
Although there is a vast literature on HIV/AIDS, relatively little has been written about how HIV/AIDS affects women, and what constitutes a high-risk group. In part, this reflects the way AIDS was initially perceived in the West as a “men’s disease”, so much so that until a few years ago a common response to the topic of women and AIDS was “Do women get AIDS?”, the assumption being that women were at little or no risk (Doyal, et al, 1994). This has never been true of Africa, where the appallingly pervasive epidemic has always been a heterosexual disease and where 55 per cent of those who have been infected were women. In recent years it has become increasingly clear that women can both become infected with HIV and transmit the virus. A study conducted by AWARE (Association for Women’s AIDS Research and Education) in America found that women who inject and share needles, have sexual contact with or are artificially inseminated by a man, lesbians, sex workers and those from an ethnic minority, especially black women, were at increased risk of HIV infection (Richardson, 1987). The study also found that most people in these groups are underrepresented in prevention or treatment interventions, and often suffer social stigma, isolation, poverty and marginalisation, which place them at higher risk. Therefore, in this chapter I am going to discuss how some of these groups are vulnerable to infection, and what can be done to prevent and treat infection in these vulnerable groups without inadvertently increasing their stigmatisation.
There is a substantial body of research on the correlation between HIV/AIDS infection and female prostitution. Studies worldwide have revealed cause-and-effect relationships between AIDS and prostitution in a number of areas, including the use of alcohol and/or psychoactive drugs, and have revealed variance in the rate and circumstance of infection from one country to another (O’Leary et al, 1996). For example, researchers have found the high rate of AIDS in Africa to be largely a reflection of exposure through sexual activity only, while in the US and Europe, transmission of the AIDS virus is more likely to come from prostitutes or customers who are also IV drug users. Many writers have pointed out that real social concern about HIV infection did not materialise until its potential “spread to heterosexuals” was recognised. What is less often pointed out is that concern for the “spread to heterosexuals” has mostly been manifest in concern for the spread to heterosexual men, not heterosexual women (Flowers, 1998). The expressed fear is that HIV will spread from women to men, allegedly through prostitution. In the press and the international scientific literature on AIDS, often the light cast upon Women in Prostitution (WIP) has been a harsh one. WIP have been identified as a “risk group”, a “reservoir of infection”, and a “bridge” for the HIV epidemic. Such technical, epidemiological language has depicted WIP as vectors of HIV infection (Scharf and Toole, 1992). Rather than presenting WIP as links in broader networks of heterosexual HIV transmission, women categorised as prostitutes have been described as “infecting” their unborn infants, their clients and indirectly their clients’ other female sexual partners, as though HIV originated among WIP (Scharf and Toole, 1992). Like posters from WWI and WWII which aimed to warn armed servicemen in Europe of the danger of contracting gonorrhoea and syphilis (Brandt, 1985, cited in Flowers et al, 1998), some AIDS-prevention posters have caricatured WIP as evil sirens ready to entice men to their deaths (New African, 1987, cited in Larson, 1988). Interestingly, there is evidence that some HIV-positive men may be inclined to claim that their infection came from a female prostitute, in order to cover up its real origins: sex with a man, or IV drug use.
There are many reasons why women engage in prostitution in Zimbabwe. Studies show that poverty and deviance are the main causes. Other studies have shown that many women engage themselves in prostitution by their own choice – and see it as a career path – whilst others might be forced into it (Chudakov, 1995). In Zimbabwe prostitution is illegal, and many women and young girls, especially orphans who engage in prostitution, are driven to it by poverty and economic dislocation, which is being caused by the current economic and political crisis the country is experiencing. According to the United Nations Children’s Fund (UNICEF), the hunger and disease-ridden conditions in much of Zimbabwe have forced many children into prostitution in order to feed themselves (UNICEF, 2008). Save the Children, a non-governmental organisation working to create positive changes for disadvantaged children in the country, estimate that girls as young as 12 are now selling their bodies for even the most meagre of meals, such as biscuits and chips. They also state that the issue is further complicated by the growing presence of child traffickers in the region, looking for young girls to abduct and take to South Africa for the use of potential clients at the 2010 World Cup (Mediaglobal, 2009). Combating child prostitution and trafficking is complicated, but prioritising the alleviation of poverty – with particular emphasis on fighting poverty from a child’s perspective; prioritising education for all, with emphasis on improving access for girls; and provision of information to victims and survivors of child prostitution and/or trafficking, including information about available counselling and legislative services – would be helpful (WHO, 2003).
Prostitution in the UK is different from that in Zimbabwe. The laws around prostitution in England and Wales are far from straight-forward. The act of prostitution is not in itself illegal – but a string of laws criminalises activities around it. Under the Sexual Offences Act 2003, it is an offence to cause or incite prostitution or control it for personal gain. The 1956 Sexual Offences Act bans running a brothel and it’s against the law to loiter or solicit sex on the street. Kerb-crawling is also banned, providing it can be shown that the individual was causing a persistent annoyance (BBC NEWS, 2008). Though actual s are scarce, it has been estimated that at least 2 million women are selling sexual favours in Britain. The bulk of these are brothel prostitutes working in parlours, saunas or private health clubs. According to The First Post published on 18/08/08, prostitution was viewed as “the new profession”. The article stated that prostitution in Britain is booming, and that thousands of young women have chosen prostitution for independence and financial security. The key factor which has led to a huge rise in this kind of prostitution is the influx of girls from Poland and other Eastern European countries which acceded to the EU in 2000. A strong relationship also exists between UK prostitutes and substance abuse, which drives many into the sex business. Intravenous-drug-using prostitutes are particularly prominent in Scottish cities such as Glasgow (O’Leary et al, 1996). According to researchers, 70 per cent of the city’s streetwalkers are IV drug addicts, injecting heroin, temazepam and tengesic. In Edinburgh, which has the highest rate of HIV-seropositive IV drug addicts of all cities in Britain, a significant number of those addicts testing HIV positive have been identified as prostitutes. Even though sex workers can transmit HIV/AIDS, blaming them encourages stigma and discrimination against all women. It allows the men who infect sex workers and their own wives to deny that they are infecting others. Wives too can infect their husbands, who can in turn infect sex workers. It is therefore important to note that sex workers and their clients are not serving as a “bridge” for HIV transmission into the rest of the population.
Can women transmit the disease to other women through sexual activity? The answer to this question is crucial for a community that knows that HIV is within it even though the question might be difficult to answer as there is “very little” information on this subject (Richardson, 1987). Lesbians were seen as least likely to be infected, as there was an understanding of HIV as a disease which existed in specific groups of people, for example gay males and intravenous-drug users. Because of these biased attitudes toward people, rather than risk behaviours, no data was systematically gathered. This understanding prevented the healthcare system from defining sexual risk behaviours: it stressed people, not sexual behaviours. It has therefore been noted that most lesbians have been in “risk situations” or engaged in what would be considered as “risky behaviour” at some stage. Some lesbians inject drugs and may share needles. Also, a significant number of lesbians have had sex with men before coming out, and many will have had unprotected vaginal or anal intercourse Some may still have sex with men for reproductive purposes (Gorna, 1996). Some may be prostitutes who, for economic reasons or through pressure from a pimp, may have had unprotected sex with clients (Richardson, 1989). According to records from a London sexual health clinic for lesbians, 35 per cent of the lesbians who attended had had sex with a man in the previous six months (Gorna, 1996). As Gorna puts it, this emphasises the fact that “activity is not always consistent with identity”. In other words, “we are put at risk by what we do, not by how we define ourselves or who we are” (Bury, 1994, p32). Although the risk of HIV infection from sex between women is very small, it is important for lesbians to look at what they do, how they do it and with whom they do it, just like everyone else, as, “Low risk isn’t no risk” (Richardson, D, 2004). However, they may find it difficult to access services and, if they become ill, they may experience special problems, given that the healthcare system is designed for and administered by a predominantly heterosexual population. There may be a lack of recognition of their relationships, which could lead to isolation and depression. For example in Zimbabwe homosexuality is illegal and punishable by imprisonment of up to 10 years. The President of Zimbabwe, Robert Mugabe, views lesbians and gays as “sexual perverts” who are “lower than dogs and pigs” (BBC NEWS, 1998). In 1995 he ordered the Zimbabwe International Book Fair to ban an exhibit by the civil-rights group Gays and Lesbians in Zimbabwe (GALZ). He followed this ban with warnings that homosexuals should leave the country “voluntarily” or face “dire consequences”. Soon afterwards Mugabe urged the public to track down and arrest lesbians and gays. Since these incitements, homosexuals have been fire-bombed, arrested, interrogated and threatened with death (Tatchell, 2001). This makes it difficult for lesbians in Zimbabwe to access information and other services, thus increasing their vulnerability to HIV infection.
The number of older people (older than 50 years) with HIV/AIDS is growing fast. Older adults are infected through the same high-risk behaviours as young adults, though they may be unaware that they are at risk of HIV/AIDS. However, when assessing the impact of the HIV/AIDS epidemic upon the world’s population, older people are often overlooked. HIV-prevention measures rarely target the older generation, despite the fact that many older people are sexually active and therefore still at risk of being exposed to HIV. The older population is steadily growing larger with the maturing of the “baby-boomer” generation as well as the availability of antiretroviral drugs which extend people’s life expectancy. Social norms about divorce, sex, and dating are changing, and drugs such as Viagra are facilitating a more active sex life for older adults (NAHOF, 2007, cited in Lundy et al, 2009). Heterosexual women aged 50 and older are most in need of the HIV-prevention message. The Joint United Nations Programme on HIV/AIDS (UNAIDS, 2006) estimates that around 2.8 million adults aged 50 years and over are living with HIV, representing 7 per cent of all cases. In the UK, the Health Protection Agency reported that almost 4,000 HIV-infected people who were accessing care in 2006 were aged 55 years or over. Data on this subject from low-income countries like Zimbabwe is fairly patchy. This is because HIV/AIDS surveillance is commonly conducted in antenatal clinics, as many people have little other direct contact with medical services. Data from antenatal clinics does not provide information about people who are above child-bearing age, thus making it difficult for healthcare and service providers to make policies that will impact on the elderly who are infected. Firstly, it has been noted that elderly women can be exposed to HIV via non-consensual sexual contact or rape. Research has shown that some criminals appear to target older women for sexual crimes because they appear to be, and often are, vulnerable to attack (Muram et al, 1992). Elderly women in institutional settings such as nursing homes may also be at greater risk. Some estimates suggest that up to 15 per cent of elderly nursing-home residents have been victims of either sexual or physical abuse, thus increasing their vulnerability to HIV infection (Collins, 2002). Exposure to blood tainted with HIV may also occur when an older woman provides care to adult children who may be suffering from AIDS (Levine-Perkell, 1996). Allers (1990) revealed that more than one-third of all adults who contract AIDS and require assistance with activities of daily living are cared-for by their elderly parents. Care-giving for an individual who has AIDS may require a myriad of activities including bathing, feeding and changing dressings on open wounds or sores. Because most caregivers from this generation tend to be women, elderly women find themselves at greater risk to exposure to HIV through their care-giving activities. Even though universal precautions are sufficient to prevent exposure to HIV through contact with bodily fluids, most elderly women are not even aware of the necessity of universal precautions. An elderly mother caring for a sick son or daughter may attribute her child’s AIDS status to “an accident” or a result of “bad sex” or drug use. Sadly, because AIDS may be viewed as victim specific, elderly women may not see themselves at risk in any way when they are exposed to their children’s bodily fluids during care-giving.
As discussed in the first chapter, power inequalities at social, economic, biological, political, and cultural levels mean that women continue to be increasingly more at risk from HIV infection. Inadequate research into the effects of HIV/AIDS on women, combined with limited drug treatment on women’s bodies and the belief that women were at little or no risk of infection, has had a negative impact on the lives of women. Continued focus on “risk groups” rather than “risk situations” not only masks the realities of HIV infection in women, but also ensures that women continue to be discriminated against in terms of access to and the provision of services. Therefore, it should be noted that AIDS is not a women’s disease, a gay disease or an intravenous-drug-users’ disease. It is a human disease which affects all people regardless of their sexuality, race or ethnicity.
Much has been written about the impact of HIV/AIDS but there has not been much success in measuring the human impact of HIV, especially in relation to gender (Whelan, 1999). Despite this, there is ample evidence that women are affected disproportionately. HIV interventions are not adapted to HIV-positive-women’s realities thus leaving them at a disadvantage when it comes to coping with HIV and AIDS. For the epidemic to be tackled effectively, the valuable skills, insights, and accumulated experiences of women and girls living with HIV and AIDS must be taken seriously by policy-makers. Their expertise can be a central force in tackling the epidemic, provided that others are prepared to listen and act on this knowledge (ICW, 2004). Therefore in this section I am going to discuss some of the factors that will impact on women infected with and affected by HIV/AIDS and how these factors will hinder the women’s access to services.
The impact of HIV/AIDS on women has been referred to as ‘triple jeopardy’ (Bennett, 1990, cited in Sherr, 1996). This addresses the key gender roles that women are generally expected to fill: productive, reproductive, and community. HIV/AIDS affects women as individuals, mothers and caregivers in these socially defined roles. Women as individuals are affected by HIV/AIDS but in programmes focusing on HIV/AIDS they are often represented as mothers and carers only. Women are bearing the burden of AIDS care. This is true in both the formal and informal sectors. The majority of nurses and social workers are women. In a developing country like Zimbabwe, the bulk of AIDS care happens in the community, with women caring for their partners and children. Similarly, in the UK, “Community Care” as defined in the provision of the National Health Service and Community Care Act (1990) includes a promotion of domiciliary and day services to encourage people to live in their own homes while giving high priority to supporting carers. In Chapter 3 of the White Paper “Caring for People”, which provided the background to the Act, the important role of the informal carer was highlighted (Department of Health and Social Security, 1989). Thus, in the age of “Community Care”, family caring will be the expected mode of delivery of a great deal of care. The burden placed upon some families, especially on women, will be immense, and will only be sustained by sensitively delivered resources from statutory authorities (Concannon, 2005). Grandmothers often have to take care of their grandchildren, whose parents are unable to care for them or have died (Tallis, 1998). May (2000) refers to the ‘time poverty’ experienced by women, which is the result of the long hours women spend on their productive and reproductive roles – collecting fire-wood, water, child care, cooking and cleaning – to the detriment of their own wellbeing. A rural woman interviewed in Southern Africa estimated that it took 24 buckets of water a day, fetched by hand, to care for a family member who was dying of AIDS – water to wash the clothes, the sheets and the patient after regular bouts of diarrhoea (UNAIDS/UNFPA/UNIFEM, 2004). For a woman living with HIV, such an increase in workload often means that she does not have time to adequately care for herself and attend to her own needs (Bennett, 1990, cited in Sherr et al, 1996). Caring also places an economic burden on women and girls. Women who have to stay at home to perform care work are less able to seek other forms of paid work, and if they are already employed, they face enormous difficulties juggling their care duties with their work obligations and sometimes have to give up their jobs (AIDS and HIV Information, 2009). This weakens them economically and leaves them more dependent upon their husbands, thereby strengthening gender inequality in the household and, because wealth makes it easier to access health services and obtain better nutrition, potentially imperilling women’s health. If women have to withdraw from the workplace to care for relatives, whole families will be poorer and thus more vulnerable to illness. These effects extend to society as a whole: if women are unable to participate in the economy, the economy’s productive potential is reduced.
Women living with HIV/AIDS often experience high levels of stigma and discrimination on the basis of their HIV status. HIV/AIDS-related stigma is highly complex, dynamic, and deeply ingrained in society. It is linked to broader, existing inequalities evident in society, and in societies’ often negative view of expressions of sexuality. Analyses of stigma seldom focus on the differences in how men and women are stigmatised and how they experience such stigma. The stigma surrounding HIV has silenced open discussion around both the causes of HIV infection and the appropriate responses to deal with those consequences (Aggleton and Parker, 2002). Stigma also invokes powerful psychological feelings in people living with HIV/AIDS, including how people view themselves. The fear of being stigmatised results in women being unable to look after their sexual and reproductive health, for example by accessing sexual health information, treatment, and methods for HIV and STI prevention, such as the female condom. Thus stigma is evident in and impacts at all levels of the prevention-care continuum. Link and Phelan (2002) cited in (Esplen, 2007) highlight four components of stigma which are shaped by social, economic, and political power: * distinguishing and labelling difference * association of human difference with negative attitudes * the separation of ‘us’ from ‘them’ * status loss and discrimination So how can progress be made in overcoming this stigma and discrimination? How can we change people’s attitudes to AIDS? The quotation below describes how this can be achieved: “We can fight stigma. Enlightened laws and policies are key. But it begins with openness, the courage to speak out. Schools should teach respect and understanding. Religious leaders should preach tolerance. The media should condemn prejudice and use its influence to advance social change, from securing legal protections to ensuring access to health care.” Ban Ki-moon, Secretary-General of the United Nations
Even among women who are able to access health clinics, fear of disclosing a positive diagnosis can interfere with their ability to maintain adherence to antiretroviral therapy, and may prohibit them from adhering to prevention of mother-to-child transmission (PMTCT) programmes for fear that using alternative feeding options (rather than breastfeeding) will reveal their positive status. ‘If you start using milk powder everyone will know you must be HIV positive. If you demand condom use, to stop repeated exposure, he will either hit you or just go off and have sex somewhere else and likely bring back other infections. So you just go on having unprotected sex and breast feeding, even though you know you are doing exactly what they tell you you mustn’t do…’ (ICW members from South Africa and Swaziland, Exchange,2006) Women living with HIV/AIDS may also be deterred from returning to health clinics by the judgemental attitudes of health workers and poor-quality services, which, combined with having to deal with the bureaucracy, long queues and being at the mercy of everyone from the ambulance driver to the receptionist, the pharmacist, and the doctors and nurses, mean that accessing and adhering to treatment can be an exhausting and traumatic process (Esplen, 2007). This therefore can be severely distressing for women, causing some to hide away (Paxton and Welbourn, 2004). Poor nutrition and a lack of basic needs present another major obstacle to adherence. Women who are unable to provide food for their families may feel pressure to sell their medications on the black market (ICW, 2006). If a woman’s relatives are not on treatment she may feel compelled to share her treatment; in other cases she may be forced to hand over her medications to a male partner or relative (ibid). In contexts where poverty limits the amount of food available and where women are the last to eat, it is practically impossible for them to adhere to ART without additional support, especially since some medicines must be taken with food (Aidsmap, 2009).
As women are the first to know about their HIV status from testing when pregnant, for those who receive a positive diagnosis, the decision of whether or not to disclose their status to partners or other family members, including children, is hard to make. Decisions around disclosure are multiple: who to tell (family, friends, children, colleagues, teachers, the Church), when to tell, and how to tell. Sometimes reactions can be supportive: ‘It has brought my family and friends closer together and showed me the strength my husband has.’ (HIV positive woman, ICW, 1999) In other cases, women find themselves judged for being HIV positive. Many women fear disclosure due to the threat of violence or abandonment by partners, especially in contexts where women have little or no legal or financial standing. This fear is a potent barrier to accessing treatment, especially where women may have to ask their husband’s permission to make or pay for the journey. The result is that many women only seek help at the last minute, when they are already very ill (ICW, 2004). Moreover, anxiety around disclosure does not necessarily diminish with time – even if someone has disclosed to close family and friends, there is always the daunting question of when to tell potential future partners, friends, colleagues, and employers. Unfortunately, for some HIV-positive women, the choice of whether or not to disclose may be out of their control, either because their actions may signal their status – accessing HIV-related services for example, or visibly suffering the side-effects of ART – or as a result of breaches of confidentiality by indiscreet family members or health workers (Tallis, 2000). The possibility that their status will be made public without their consent understandably strongly discourages women from obtaining an HIV test, seeking necessary treatment, or being open about their HIV status. Such breaches of confidentiality also constitute a severe infringement of women’s human rights. A participatory ICW project researching services for HIV-positive drug/alcohol-using women living in London, UK, revealed that many of the women had concerns about disclosing their HIV status and drug use to existing or new partners (ICW forthcoming). In fact, former and existing partners tended to display a good level of support, but the fear and expectation of rejection was often intense. For HIV-positive women who are also injecting drug users, revealing drug use and co-infections is an additional worry. Disclosing drug use or a positive HIV status to one’s children is especially difficult for many women, due to concerns about possible negative or fearful reactions and about the impact on the children’s lives.
In spite of the many difficulties for women, there have been some very positive responses from organisations which recognise that women’s interests are being ignored, misunderstood and neglected, such as Positively Women and the Scottish Women and HIV/AIDS Network in the UK (Aidsmap, 2009). However, not all women’s needs are being met by these organisations. Therefore, professionals such as doctors, healthcare workers and social workers need to support women in accessing all the services available as well as referring them to support groups which meet the needs of different groups of women.
Social work in the UK and internationally has been applied to a wide range of groups, and these include older people, people with physical and sensory impairments, mental health service users, young people, people with learning difficulties, and more recently people living with HIV/AIDS. But it is often associated with work with “children and families,” particularly with “child protection” work (Beresford et al, 2007). This has been the most high-profile area of social work practice and the area which, in the UK, has had most criticism. It has been associated with a long series of childcare tragedies and scandals stretching from the 1950s to the twenty-first century. These have been influential both in shaping social work policy and practice and in influencing public attitudes towards social work. While it is in the fields of childcare and child protection that social work seems to have experienced the most difficulties, this has tended to be a preferred area of practice among many social workers, who choose this area over other groups, such as the old and the disabled, as they are seen as less interesting and attractive (Beresford et al, 2007). The integration of adult social work services with health has therefore led the state, charitable and for-profit organisations to provide social work services and to employ social workers. One of the services offered in adult social work services and HIV/AIDS in the UK is palliative care. Palliative care for HIV/AIDS includes interventions that respond to the physical, emotional, psychosocial, spiritual, and bereavement needs of adults and children with HIV/AIDS and their families, from the time of diagnosis, through the final stages of disease and death (Beresford et al, 1997).
Specialist palliative care social work is provided in a range of settings, including independent hospices, day hospices, NHS specialist palliative care units, oncology wards and in home-care teams. It includes working with people with cancer, HIV/AIDS, motor neurone disease, chronic circulatory diseases, and other life-threatening illnesses. The formal definition of specialist palliative care social work, as for all social workers, is that it should: [promote] social change, problem solving in human relationships and the empowerment and liberation of people to enhance well-being. Utilising theories of human behaviour and social systems, social work intervenes at the point where people interact with their environments. Principles of human rights and social justice are fundamental to social work (IFSW, 2001). Specialist palliative care social work has tended to be neglected in mainstream discussions and literature of social work (Dominelli and Payne, 2002). It is however an important, expanding and innovatory field of practice with its own UK Organisation: The Association of Hospice and Specialist Palliative Care Social Workers. But, ironically, while social work generally tends to have low status and a poor press, the same does not seem to be true for specialist palliative care social work. It has been positively associated with a highly valued area of health and welfare provision, and hospice and palliative care services. It is perhaps this that makes it such an illuminating example of social work’s significant and complex role in relation to tackling health inequalities (Beresford et al, 1997). Specialist palliative care social workers work with a very diverse population. Unlike many fields of social work, specialist palliative care social work is potentially a universal service and social workers are used to working with a diverse range of people in terms of class, gender, race, age, disability, ethnicity, religion and sexual identity. Palliative care social work involves working with two groups of people-direct service users with life-threatening or terminal conditions and those who are bereaved. Social workers are skilled at balancing the different and sometimes competing needs of the two groups (Davies, 2008). Specialist palliative care social work also offers a wide range of support to patients and families including practical help and advice around income maintenance, debt counselling, help with housing and accessing other services, advocacy, individual counselling, and group support. This will include bereavement work with adults and children both as individuals and in a group setting. The key to specialist palliative care social work is the desire and ability to see people as whole people and not as a set of problems, to understand the connections of their lives and to seek to act, rather than to ignore the constraints and discrimination they experience in society. As Napier has observed, “social work places ideas about crisis, loss, grief and bereavement within an appreciation of people’s diverse and unequal social circumstances” (Monroe and Oliviere, 2003). Studies across several different sub-populations point to the provision of home-care and of help with accessing benefit entitlements as being greatly valued. HIV-positive women reported a high degree of satisfaction with specialist HIV/AIDS social services workers, appreciating the practical and emotional support that they provided (Positively Women, 1994). Practical services such as cooking, cleaning and shopping were identified by nearly all women as making the difference between remaining at home and going into hospital. (Warwick 1993), also reporting on the home-care requirements of people who are HIV positive, found practical help accessed through social workers to be most highly valued. This included increased benefits and advice, home-care and the coordination of services. There are also indications that support with the emotional demands of facing death – which, in principle, lies within social workers’ repertoires – is not only appreciated by service users but may also have positive outcomes. Littlewood (1992), cited in McLeod, (2000) found that carers who had lost a close family member particularly valued the continuation of emotional support from professionals whom they had got to know and had found supportive prior to the deceased’s death. This endorses the potential value of hospice social workers’ continued contact after bereavement.
Even though the current government has declared that care to promote physical and psychosocial wellbeing should be made available for “all those who face life-threatening illness” (Addington-Hall, 1998), research shows that access to such services is generally acknowledged as a postcode lottery. Services are generally unequally based and distributed around the country. In some areas there is very little provision. This is well documented and a cursory glance at the Hospice Information Handbook shows that there is very little provision in some areas. In terms of diagnosis, this is changing; however, specialist palliative care has generally been available to those with cancer and motor neurone disease, while those with end-stage heart failure, HIV/AIDS and a range of other conditions often fail to access specialist palliative care. Uncertainty of funding for palliative care contributes to these difficulties. Many hospices and palliative care teams receive only a fraction of their funding from statutory sources (30% from the NHS) and have to rely on charitable fundraising for the rest. This excessive reliance on the voluntary sector and charitable funding exacerbates the inequalities, favours the model of standalone hospice buildings, and has led to poor planning and overall integration of services. Sustainable and adequate core funding from the NHS is essential to allow support of palliative care services and strategic planning for the cohesive development of services across the country. Palliative care services cannot continue to be funded primarily through charitable sources (Royal College Physicians, 2007). There is also evidence that black and minority ethnic service users have inferior access to specialist palliative care (Hill and Penso, 1995). Apart from a few urban hospice and specialist palliative care units most specialist palliative care patients are predominantly white British. Stereotypes of extended families caring for sick family members may operate on the part of the referrers and many minority ethnic groups may know little about what hospice and palliative care services have to offer. There are also indications that the same discrimination applies on a class basis, with working-class patients having inferior access (Oliviere and Monroe, 2004). This also creates inequalities for people with very pressing social problems, who may be living in poverty, bad housing, and with many family difficulties as well; unless their disease is symptomatic, they will not be referred to specialist palliative care. They will not access a range of services that may be helpful, from emotional, practical and financial help to accessing complementary therapies. Research also shows that lesbian women’s requirements in palliative care continue to go relatively unseen compared to those of gay men. The way in which heterosexist assumptions permeate all corners of institutional engagement with lesbian women’s lives in the course of life-threatening illness is revealed in Croft (1996) through identification of the range of heterosexist assumptions that need challenging: “about partners, families and children in support services, related problems of confidentiality and the possibility of exclusion from decision-making following the death of a partner”. A shortage of palliative care social workers is also a barrier in delivering palliative care to the community. This is because palliative care is often not included in the curriculum at medical universities or nursing colleges, leaving doctors, nurses, psychologists, social workers, and other healthcare professionals ill-equipped to deliver the type of care needed for patients and their families. Generally, access to specialist palliative care is increasingly narrowly defined in medical terms. That means that only patients who have defined “palliative care needs” will access the services. These needs are medical, not social, emotional and psychological. The effect of this is that people are almost never referred to specialist palliative care to see the social worker first, or simply to see the social worker only. It means that people who may have a terminal/life-threatening illness that is not particularly symptomatic will not access specialist palliative care whatever their emotional or social needs. This creates inequalities for people living with dementia or mental health problems, because if these conditions are seen to be dominant they will not access specialist palliative care. (Croft, 1996)
The development of social work in Zimbabwe was greatly influenced by practices in Britain, partly because of the colonial ties. Social work takes place in a number of different settings, both in government departments and in non-government organisations, and qualified social workers are registered with the Zimbabwe National Association of Social Workers. However, almost half of Zimbabwe’s social workers have come to the UK as a result of the country’s economic slump and poor working conditions, leaving Zimbabwe’s welfare system in “a desperate situation” (Guardian, 2003). Because of the increasing numbers affected by the HIV epidemic, community healthcare workers and volunteers from International Non-Governmental Organisations (NGOs), independent societies, faith-based organisations (FBOs) and community-based organisations (CBOs) have stepped-in to do the jobs of professional healthcare workers in support of the government in delivering services to those infected and affected by HIV/AIDS through direct counselling, treatment intervention and social justice (CHBC Atlas, 2007). In Zimbabwe, palliative care is still not widely understood or implemented and is not standardised, although Zimbabwe is one of the first countries in Africa to embrace the hospice and palliative care concept. Therefore home-based care programmes have been the typical means through which palliative care services, including end-of-life care services, reach the individual and the family. The government of Zimbabwehas over the years ensured thecontinuity and quality implementationof the Community Home-Based Care (CHBC) programmethrough theprovision of supportivepolicies and guidelines. Some of thePolicies and guidelinesthat are available to guide Community Home-Based Care include the following: * Discharge Planning Guidelines for Chronically Ill/Terminally Ill patients 1998, reprinted in 2001 * The CHBC Policy for the Republic of Zimbabwe: 2001. * National Community Home-Based Care Standards: 2004 * National Home-Based Care Training Manual 2005 * Guidelines on Dietary Management for PLWHA: February 2005 (National Aids Council, 2007) The purpose of these policies was to ensure that there would be continuity of care from healthcare institutions to the community, to help raise awareness about available resources, to encourage support for the community and local healthcare providers, and to provide an overall framework for caregivers in the implementation of CHBC priorities (SAfAIDS and HDN, 2008).
Community home-based care can be defined as the care and support that people living with HIV/AIDS and other chronic illnesses receive in their homes, through their families and communities. This care addresses the medical, nursing, emotional, spiritual, psychological, social and material needs of people living with HIV/AIDS and their families (WHO, 2003). Therefore the question which needs to be asked and answered is: can we refer to those who help and support those infected with HIV/AIDS in Zimbabwe as social workers, as they have the same responsibilities as those of qualified workers? The answer to this question can be found in the definition of social work issued jointly by the International Federation of Social Workers (IFSW) and the International Association of Schools of Social Work (IASSW) in 2001, which states that: “The social work profession promotes social change, problem solving in human relationships and the empowerment and liberation of people to enhance well-being… Principles of human rights and social justice are fundamental to social work (IFSW/IASSW, 2001, quoted in BASW, 2002, p. 1). From this it follows that the purpose of social work is to improve social problems, therefore global social work should have as its primary aim the alleviation of global problems rather than the current apparent aims such as professional education, identity and maintenance.” From the definition given by the IFSW, one of the principles of social work is to promote social change. This principle is being met by churches and NGOs in Zimbabwe who offer support and care to those infected and affected by HIV/AIDS by providing them with all basic needs such as food, clothes, sanitation and shelter. This principle is also supported by the preamble of the BASW Code of Ethics (2004) states that “the primary mission of the social work profession is to meet personal and social needs; enable people to develop their potential and to help contribute to the creation of a fairer society”. The BASW code of ethics (2004) also states that social workers have a duty to “…promote equal treatment without prejudice and discrimination, reduce disadvantage and exclusion and challenge the abuse of power” in order to curtail the spread of HIV/AIDS. In Zimbabwe this is also done by churches as they have a position of respect and influence in communities and can be vital in providing the key to challenging and transforming cultural expectations, gender roles and traditional practices which can increase women’s vulnerability to infection. For example, Christian Aid Taskforce (CAT), a faith-based organisation in Zimbabwe, ran programmes which took a “whole life approach” when discussing gender inequality and HIV/AIDS within the wider context of relationships, life skills and Christian life. Since gender stereotypes and traditional practices vary in different cultures, locally based volunteers who were trained conducted these sessions, and were able to challenge the cultural context from within, using locally known stories and culturally appropriate examples, thus making the intervention more effective (Aidsportal, 2009). Home-based care workers use a variety of intervention methods when working in the community, just as professional social workers do when working with their service users. For example, health workers or volunteers who work for Home-Based Organisations make visits to people’s homes for perhaps one or two hours. They assist with much of the care provided by families including household chores and cooking, as well as performing more clinical tasks such as administering pain relief (AIDS and HIV Information, 2009) They also use skills such as building trust and forming professional relationships with service users and their families, keeping records, and running support groups for different age groups, teaching people how to prevent infection and to care for and support those infected. They also run camps for young people focussing on general life skills, making positive choices and goal setting. These intervention methods are made effective by the use of local workers who are aware of the cultural and religious beliefs in that particular area. This piece of work is also supported by the GSCC Code of practice (2002) Para 1.6 which states that as a social care worker one must “Respect [the] diversity and different cultures and values” of service users. Community home-based care also promotes community participation and involvement while at the same time empowering family and community members. People with HIV/AIDS can be cared-for in the familiar environment of their homes by relatives at convenient times while also accommodating other household commitments. The presence of relatives and community members during difficult times or final moments may reduce stress and depression, and this also provides opportunities for the health education of family members. This is supported by the GSCC codes of practice (2002) Para 1.2 which states that as a social care worker one must: “Respect and, where appropriate, promote the individual views and wishes of both service users and carers”.
Exploring the differences and similarities between Zimbabwe and the United Kingdom in terms of how services are provided and delivered indicates a big gap in the health systems of the two countries, mainly due to the economic crisis and political problems which Zimbabwe is currently experiencing. This chapter has shown that even though non-professionals are delivering services in Zimbabwe they are “the heroes” of Zimbabwe’s response to the devastating impact of the HIV epidemic and strive to ensure that infected and affected people can live with hope and dignity (Health Development, 2002). Non-professionals therefore need to be accounted-for and valued in economic terms because of their critical contribution to society. However, there are both strengths and weaknesses in using professionals or non-professionals for the care and support of women with HIV/AIDS as will be discussed in detail in Chapter 6.
From the previous chapters we have learned that women account for nearly half of HIV infections worldwide. However, in recent years, considerable energy and money have been spent trying to achieve universal access to treatment, prevention and care for HIV and AIDS by 2010. The use of combination therapy with antiretroviral agents (ARVs) renders AIDS a chronic but treatable disease more like diabetes than other serious viral diseases, so that people living with HIV and benefiting from these treatments can lead normal lives in many respects. But access to effective prevention and treatment varies widely. In Australia, the United States of America and Europe (including the UK), many people with AIDS have resumed normal lives. In poor countries like Zimbabwe, however, and among the poor living in wealthy societies, HIV remains a death sentence. Over the past decade, the “outcome gap” – the different fates of rich and poor – has widened considerably (WHO, 2003). Therefore in this chapter I am going to look at the differences in the availability of services to women infected with HIV in Zimbabwe and the UK.
HIV voluntary counselling and testing (VCT) has emerged as a central prevention strategy in national AIDS-control plans in most developing countries, including Zimbabwe. This is because VCT is effective and economical in stopping the spread of the disease and in caring for those affected by it. VCT creates a powerful motivation to change sexual behaviours, whether clients test positive or negative. It also opens a critical gateway to care and support services (Morrin et al, 2003). The Zimbabwean government emphasised the importance of voluntary counselling and testing for HIV (VCT) in its National AIDS Policy in 1999, and reports that between 2005 and 2007 the total number of VCT sites increased from 395 to 649. The government has therefore set a target to increase the number of people who know their status from 20 per cent in 2007 to 85 per cent by 2010 (AIDS and HIV Information, 2009). Despite the priority assigned to VCT in prevention and treatment access plans, the actual uptake of VCT in Zimbabwe still remains low. Research shows that only 11.8 per cent of women and 9.2 per cent of men report having been tested and being aware of their HIV status (Morrin et al, 2003). The overall low uptake of VCT may be associated with the lack of resources needed to implement plans for rolling-out test-centre sites and with the intense stigma associated with HIV that leads to ambivalence towards HIV testing (AIDS and HIV Information, 2009). Some NGOs and CBOs have however implemented mobile VCT services that provide free, anonymous, rapid testing in public and remote areas where a static VCT site would be cost prohibitive, at places such as marketplaces in rural communities and in high-density communities, thus overcoming the practical barriers to accessing such services and linking individuals to these services (Morrin et al, 2003). In 2007, the government shifted focus from voluntary testing to provider-initiated routine testing, where the emphasis is on the service user to opt-out. This move follows joint UNAIDS and World Health Organization guidance in 2004. While knowing one’s status can sometimes enable women to better protect their health and the health of their partners, the move towards opt-out testing is highly problematic in contexts in which: inequality and HIV-related stigma make disclosure a life-threatening prospect; women have limited access to care, treatment and support; women are not in a position to decide for themselves whether they want to be tested; and stigma and discrimination from healthcare providers, in the workplace and elsewhere, make asserting one’s rights impossible (ICW, 2006). ‘Do people really have the power to opt out of having a test at health centres, particularly as health care centres are seen by most women as places of powerlessness? Routine testing assumes that somehow a woman, who may have very limited ability to negotiate and who has been subjected to subordination all her life, who as a result of her circumstances may have very limited self esteem, is going to meaningfully participate and decide whether she should be tested or not.’ (ICW, 2006)
Largely as a result of Zimbabwe’s declining economy, there has been a shortage of antiretroviral drugs (ARVs). In 2009, Zimbabwe recorded a decline in the prevalence rate of HIV from 15.6% to 13.7%, an indicator that progress is being made in the prevention and treatment of HIV/AIDS. However, the Zimbabwe Association of Doctors for Human Rights (ZADHR) reported that only 180,000 of an estimated 400,000 persons in urgent need of antiretroviral therapy (ART) are currently on treatment. Also, even though the Herald Report on 22 January 2008 reported that 432,000 pregnant women had been tested for HIV/AIDS, the provision of PMTCT remains severely limited, as shown by the high numbers of children (120,000) living with HIV/AIDS in Zimbabwe, most of whom became infected through mother-to-child transmission (AIDS and HIV Information, 2009) At sites where ART is available, reports note that they charge PLWHA an ‘administration’ or ‘card fee’ – essentially user fees – to access free drugs. This undermines the intention to promote universal access and prevents those without access to financial resources from exercising their right to seek medical attention and to access treatment, especially women who live in rural areas, who often rely upon husbands working in urban areas for financial support. According to research conducted by the Zimbabwe Women’s Resource Centre Network, three-quarters of all women on ARV treatment are from urban areas, yet most of those who need it live in rural areas and are often forced to rely on herbal remedies (IFHHRO, 2009). Another barrier to treatment has been a severe national shortage of healthcare workers, which has led to long waiting lists and administration problems. The extent of the shortage of healthcare staff in Zimbabwe is sharply illustrated by the declining medical practitioner-population ratio: Doctors Nurses Zimbabwe 1: 6250 1: 1400 South Africa 1: 1300 1: 250 UK 1: 400 1: 80 (WHO, 2006) Other reports have revealed that people living with HIV/AIDS in Zimbabwe have crossed the border into Mozambique in order to receive ARVs, which Mozambique provides for free (AIDS and HIV Information, 2009).
Increased condom use has been recognised as a major factor in the recent decline in Zimbabwe’s HIV prevalence. Guiding Principle 9 of the National HIV/AIDS Policy recommends that condoms should be made available, accessible and affordable to all sexually active individuals (Sikosana, P, L, N, 2009). A number of free condoms for males and females are distributed by the government, NGOs and social marketing campaigns in all medical centres, hospitals and clinics. These are usually plentiful and available to those accessing the healthcare facilities, whether in an urban or rural context (AIDS and HIV Information, 2009). The number of condoms sold through the private sector, for example in pharmacies, service stations, supermarkets, kiosks and bars, has also increased dramatically and anyone can easily access them.
The UK has been very successful at preventing and reducing the number of people who die from AIDS-related illnesses through the availability of antiretroviral drugs. Data published by the Health Protection Agency show that since the mid-to-late 1990s, the number of HIV-positive people accessing HIV-related care in the UK has substantially increased. Around 18,000 people were being treated in 1998; this number had more than tripled by 2007. The Health Protection Agency also reported that of those HIV-positive people receiving antiretroviral therapy, 97 per cent were taking a combination of three or more antiretroviral drugs, with the remaining 3 per cent taking one or two (HPA, 2009). The UK has also been successful at preventing mother-to-child transmission of HIV. Since the introduction in 2000 of the universal offer and recommendation of an HIV test to pregnant women as a routine part of antenatal care, uptake of testing has improved substantially (HPA, 2009). This has led to a considerable improvement in the proportion of previously undiagnosed women being diagnosed during the antenatal period. In England about 30 women were reported as diagnosed during pregnancy in 1997, and this rose to over 560 in 2004; at the same time, an increasing number of women having babies were aware of their diagnosis before becoming pregnant, the number rising from about 70 in 1997 to over 470 in 2004 (unpublished data from the National Study of HIV in Pregnancy and Childhood [NSHPC]). In 2008, HIV test and uptake was 95 per cent, resulting in at least 90% of infections being identified before delivery (HPA, 2009). However, even though there are many services available to women who are infected and affected by HIV/AIDS, not all groups of women can easily access them, for example black African women, lesbians, elderly women and women who inject always find it difficult to access services. Therefore I am going to discuss how these groups always find it difficult to access services that should be available to them.
African women living with HIV/AIDS in the UK still face significant challenges in accessing services. Even though ARVs are easily accessible in the UK, many African women living with HIV still face significant challenges in accessing them. Recent changes in the immigration and asylum laws in the UK have subjected asylum seekers to increasingly insecure conditions. For example, the regulation imposed in April 2004 moved from a system of universal rights-based healthcare provided by the state to a situation where most, but not all, are legally entitled to care. Asylum seekers who have failed in their claims are no longer entitled to secondary treatment without charge, and, as they are not allowed to work, this will make it impossible for women to access treatment (Freedman, 2003). Research has also indicated that the British Medical Association (BMA) has tried to require doctors to report suspected illegal immigrants (BMA, 2001). This association takes the view that requiring healthcare workers to report suspected illegal immigrants in their patient population undermines trust between healthcare workers and service users and puts public health at risk. Fear of being deported following a failed immigration application leads many to opt for life in the UK as illegal immigrants. Therefore, if one’s immigration status is experienced as an impediment to treatment and prevention, then there are significant connections between the rights of migrants and rights to healthcare (Parliament Joint Committee on Human Rights, 2007). A number of studies have also shown that PLWHA generally face a range of problems, such as poor housing, illness and disability, treatment side effects, discrimination, and poverty. However, only a limited number of studies have looked specifically at the problems faced by female African immigrants living with HIV/AIDS in the UK (Allan and Clark, 2004, Chinouya 2001 and Weatherburn et al, 2003). Research by Weatherburn et al (2003) included an analysis of the health and social needs of African people with HIV and stated that between half and three-quarters of Black Africans report significant ongoing difficulties in the following areas: income, immigration status, housing and living conditions, and access to training, skills and job opportunities. Difficulties in meeting these basic needs led to ongoing difficulties associated with anxiety and depression, and affecting their ability to sleep, their self-confidence, and their personal relationships (Weatherburn et al, 2003, cited in Parliament Joint Committee on Human Right, 2007). Even though the government developed a health strategy aimed specifically at improving the sexual health of African communities (Department of Health, 2004), there are still some fears that language and cultural needs could lead to inadequate services for many African people, as most specialist services are in London. More research is still needed to be able to address these issues.
Lesbians may find HIV services difficult to access as health and social services are specifically designed for, and predominantly provided by, heterosexual people (Barrow, 1992). While sexuality is important to most people, feelings about sexuality are something most people accessing services can avoid talking about and an implicit assumption is often made by heterosexual social workers and other healthcare workers that all women are heterosexual (Gorst, 2001). Yet, for people who are HIV, feelings about sexuality often come to the surface (Bisset and Gray, 1992, cited in Gorst, 2001). Lesbian HIV-positive women may be discriminated against because of their sexuality or may feel they cannot disclose their sexuality for fear of discrimination. They may experience a lack of recognition of their relationships (Barlow, 1992) at a time when the support of partners, family and friends may be of greater importance (Gorst, 2001). Worse still, there have been cases where courts have awarded custody to male partners on the basis that women were lesbians and therefore unfit mothers, and social workers have been instrumental in lesbian mothers losing their children through recommendations made in social inquiry reports (Brown,1992, cited in Gorst, 2001). Therefore all healthcare workers need to recognise the importance of sexuality to all HIV-positive women, but must avoid making heterosexist assumptions about women’s partners.
Chapter 3 stated that elderly women are also at risk of getting HIV infection through rape, drug use or their roles as carers. However, when it comes to social support services aimed at their particular needs, older PWAs are all but invisible. People’s attitudes about AIDS and the elderly reflect the beliefs we have formed about how people behave in their second half-century, for example the belief that old people are no longer interested in sex and that old people do not use drugs (Engle, 1998). Due to these beliefs, many AIDS service providers are not used to working with older clients and may not see the need for age-specific services. For example, research has shown that if an elderly woman seeks help through a rape crisis centre or hotline, it is unlikely that the staff member helping her has had any training in supporting an elderly rape victim. Older women who decide to join a support group for rape survivors may also feel alienated or intimidated because other members of the group will be significantly younger (Polaneczky, 1995). Other elderly women simply would not know who to contact if they are raped. In addition, some of the early symptoms of HIV mimic age-related conditions, and many doctors and other professionals apparently buy into the myth of elderly celibacy and sobriety. Elderly women who contract HIV are at greater risk of being misdiagnosed with Alzheimer’s disease or other common forms of dementia. More than two-thirds of all individuals with HIV are expected to develop some form of dementia (American Academy of Neurology AIDS Task Force, 1991), and many elderly adults infected with HIV are asymptomatic except for the cognitive changes associated with AIDS-related dementia (Aupperle, 1996). In other words, cognitive symptoms may be the first to emerge in an overall symptom presentation. Because Alzheimer’s disease is the most common form of dementia among older adults, it is likely that family members, friends and even health professionals may elect to pursue a more familiar and stereotypical diagnosis of Alzheimer’s disease, thus ruling out HIV-associated dementia complex.
Reports indicate that there are many reasons why services do not reach female injecting drug users. Firstly it has been noted that services are not gender responsive. The lack of trained female service providers with appropriate skills and a proper attitude often deters female injecting drug users from accessing services, since they feel uncomfortable speaking openly about their problems with men. Female injecting drug users with children may also not seek services because of fear of hostility or of having their children taken away from them. It has also been noted that many drug treatments fail to recognise the connection between drug use and violence that many women experience. Aggressive male-centred techniques are often employed in treatment programmes and, in many cases, women are put into groups with men who are violent towards their own sexual partners (Finnegan et al, 1993). Given the proportion of drug-using women who have experienced sexual abuse, estimated to be as many as 75 per cent (Bollerup, 1990, cited in Finnegan et al, 1993), such services will not only fail to address these underlying issues, but will also make matters worse by exposing women to further violence. Many HIV/AIDS-prevention and care services, including for drug dependence treatment specifically for women, are few and far between, and even when they do exist they are often in residential settings, which do not admit women clients, particularly if they are pregnant, HIV positive, or have children. The reasons for such restrictive admission policies range from a lack of sex-segregated accommodation and childcare facilities to a fear of transmission of HIV to other clients and even to staff (Stuntzner-Gibson, 1991). Females may also encounter barriers in accessing services because of household responsibilities, lack of family support, lack of social networks and lack of financial resources. They also have to cope with a lack of privacy and confidentiality and thus fear of being identified and stigmatised.
This chapter has shown the differences in the accessibility of services to women in the UK and in Zimbabwe. Even though the message on World AIDS Day was “Universal Access of ARV”, this report has shown that this is not possible in Zimbabwe mainly due to the bureaucratic nature of government systems and the economic hardships being experienced in the country, which have negative effects on the availability and effectiveness of ARV and the shortage of healthcare workers, thus impacting on the poor women infected and affected by HIV/AIDS. There is therefore the need for the enactment of legislation that specifically protects the human rights of PLWHA, which should include an enforceable provision for the right to health under which universal access is guaranteed within the bill of rights of a new Zimbabwean constitution (IFHHRO, 2009). In the UK, the accessibility of HIV/AIDS treatment is universal even though some groups of women are reluctant to come forward to access them. It is therefore important to develop tailored prevention and care programmes which address directly and indirectly the specific needs of different groups of women through referrals, service linkages and partnership. There is also a need to include all different groups of women and civil society organisations representing them at every stage of the policy and programme development process to make them realistic and responsive to the needs of the community.
“AIDS is not curable, but it is care able” (UNAIDS, 2001). This quote emphasises the invaluable role of palliative care to people in our communities living with HIV/AIDS. In this chapter I am going to discuss the strengths and weaknesses of using either qualified or non-qualified workers in caring for and supporting those affected by and infected with HIV/AIDS, taking into consideration the differences in the economic and political stability of the two countries.
As I have discussed before, social work in the UK is only practised by those who have qualified and been registered. However, there are both strengths and weaknesses in using professional workers to work with service users. One advantage is that social work education is generic and therefore provides a good basis for understanding the totality of issues confronting people who use services (Waddilove, 2004). Because of their knowledge and skills to work effectively with different individuals, they have the potential to develop “whole systems” thinking about situations and people rather than being limited to perceiving just a part of a situation. They use the holistic model to understand the situation a service user is in from different angles, for example using traditional methods such as kinship care to help care for the orphaned children, thus making their interventions effective. On an individual level, social workers provide a broad range of services and support to those living with HIV/AIDS. They are familiar with community resources such as income support bureaucracies, education/training programmes, prescription drug programmes and policies, housing, human-rights legislation and legal services. Social workers often work with those living with HIV/AIDS to navigate these systems, while empowering service users to make informed decisions affecting their health. However, there has been a considerable amount of literature on professionalism in social work and whether it is appropriate or not for social work to define itself as a profession (Healy, 2000). Does the use of the term “profession” in social workers’ self-definition have human-rights implications for social work? Heraud (1970) defines professionalisation as “the process by which occupations change in the direction of the elements represented…” He suggested that occupations can be grouped on a continuum, with established professions at one end and “less skilled and prestigious occupations” at the other end. Professions have been criticised by a number of writers because of the inappropriate wielding of professional power as a form of control (IIIich et al, 1977). If this is the case, professionalism has significant human-rights implications, and indeed the term “human rights profession” would be an oxymoron. If the very idea of a “profession” carries with it disempowering practice, then it is incompatible with a human-rights perspective. Another adverse effect of the therapeutic model of the professional relationship in social care is that it has influenced attitudes to particular forms of service not only among formal carers, but also among lay people, clients and informal carers of HIV/AIDS patients. Consumer surveys repeatedly find that practical services such as home help and welfare-rights advice are regarded by social workers as less complex and indeed less “professional” than counselling services (Norman and Redfern, 1997). Research found that practical activities which clients and carers find most helpful are those least valued by social workers, thus affecting the relationship between a social worker and service users (Norman and Redfern, 1997). Thus there is a need for professional social workers not to choose the type of work they want to do with service users as this will also help in relationship building with them. The conventional therapeutic approach to the professional relationship not only directly denies services that users need, but also does so indirectly because of the rivalries it has created between the professions. This has led to difficulties in interdisciplinary working and the integration of care packages from more than one agency. A review (Sheperd, 1987) of the attitudes of general practitioners to social workers talks of the generally poor relationships between GPs and social workers. Dalley (1993) describes the destructive effects of clashes in professional ideology and what she describes as “organisational tribalism” disclosed by her own research on inter-professionals working in Scotland. She quotes a GP who refers to competition between medicine and social work over the definition of problems: “…doctors and social workers…vie for whether a problem is a social or medical problem…to establish precedence there (Dalley, 1993). Infrequency of home visits and constant changes in personnel have been cited as another problem with families involved with social workers. A study by Van Den Eyken reports predominantly unfavourable views of professionals like social workers and health visitors compared with views of the volunteers who were involved in a special scheme of family support that was started in Leicester in 1973. Many made disparaging remarks about the statutory agencies, citing the infrequency of visits by social workers, whom they accused of treating their families like broken-down cars. Mothers in the study referred critically to haphazard and brief visits by statutory agency workers, coupled with a rapid change in personnel. Their visits were often seen as a threat by these families under stress, “their intervention seen as being no more than an interruption in a life which basically operates in their absence”. The distancing factor was seen as a critical difference between the statutory service agencies and volunteers who were performing quite different tasks within the family. The former are seen as delivering a standard service, the latter as providing more general support for the family (Eyken, 1982).
With the accelerated increase of AIDS cases in Zimbabwe, the inadequacy of the health services system, hospital bed occupancy of 50 per cent and the very high demand for health workers, the state is forced to look for alternative ways to care for these clients, and is relocating patients suffering from AIDS-related illnesses back into the community in order to provide adequate care to patients with curable diseases (Metteri, et al, 2004). Therefore, the use of non-qualified healthcare workers in home-based care (HBC) has become an essential resource in dealing with the increasing disease burden in the country (WHO, 2004). Despite the fact that HBC is a critical aspect of local strategies to address HIV/AIDS, there are also both strengths and weaknesses of using non-qualified workers in Zimbabwe. One strength is that community home-based care has the positive potential to unite aspects of care with prevention; in the past, care and prevention have been commonly treated as two exclusive concepts. By including the family and the community in the care of AIDS patients it becomes possible to discuss prevention within the community. Once AIDS patients are considered a reality, it is easier for people to accept their responsibility to prevent further transmission of the virus (AIDS Action, 1995). However, there are a number of weaknesses in using HBC workers. Firstly, research has shown that there is a lack of support, training and supervision for HBC workers. Stress and burnout are other problems that HBC workers often suffer from. According to Payne (1999), stress can be understood as a process that occurs when people find themselves unable to deal adequately with the stressors facing them. Stressors mentioned in the literature on HIV/AIDS care include: systematic challenges such as a lack of resources, support and training (Greenfield et al, 1999); a heavy and unpredictable workload; physical symptoms; inevitable death of patients with HIV/AIDS; and over-involvement with HIV-positive patients (Akintola, 2006). Lack of support in situations like these will prevent HBC workers from being fully dedicated to their work, and denies them access to psychological support, recognition and positive reinforcement to sustain them over the long haul. The research also stated that where professional regulation did not exist, this may affect the quality of care given by these workers. However, it is recognised that poor supervision and regulation can be a problem with any healthcare worker and can create quality-of-care problems (AIDS Action, 1995). It has also been noted that HBC providers take on the responsibilities as a result of their personal experience either as a person living with HIV or as a family caregiver to someone with AIDS. This personal experience generally infuses them with a strong commitment to the work. However, it does not automatically endow them with care-giving skills, particularly in diagnosing conditions that need to be treated by a professional. Another indication of the inadequacy of the home environment is the lack of appropriate shelter. A study done by Metteri et al (2004) in neighbouring Botswana found that some of the AIDS patients lived in old derelict houses whilst some lived in plastic shacks. These are obviously not places where the wellbeing of patients can be adequately supported. Additionally, of the thirty patients they interviewed, they found that four did not have a caregiver and two were cared-for by children, while three had “caregivers” who were not capable of fulfilling this role due to old age or disability (Metteri et al, 2004). All these findings indicate that patients are referred home without adequate assessment of their domestic environment despite the fact that, according to the discharge plan utilised in hospitals, social workers should assess the social and economic environment of clients before they are referred (AIDS/STD Unit and WHO, 2000, cited in Metteri, et al, 2004). Reduced donor support often undermines the effectiveness of HBC programmes, as organisations either scale down or reach out to clients with very limited services. Although volunteer caregivers are keenly aware of the needs of PLHIV, their efforts are hampered by a lack of basic provisions: medication, gloves, soap, food, and other basic supplies. The quality of care in many HBC activities is severely compromised as a result of significant and unmet needs. HBC programmes are having to make do with very few resources and are in desperate need of material support. According to UNICEF, Zimbabwe has nearly 2 million orphaned children, mainly due to AIDS (2007). An estimated 142,000 children are HIV positive (UNGASS, 2007). Although the government and donor partners have initiated an Orphans and Vulnerable Children Plan of Action, resources are too few to meet the current needs. Children, especially girls, are missing out on their education because of their increased caretaking responsibilities at home. The costs of school uniforms, textbooks, supplies and examination fees are also keeping children out of school, further compounding their exclusion within society. In addition, HIV-infected children often have to take ARVs without being told why they are taking the drugs, raising many ethical challenges and questions (Safaids, 2008). To fulfil these demands, individual care organisations will need to access new donor support and develop unprecedented partnerships, networks and coordination to maximise the very limited resources available to them. These basic questions of resource allocation and distribution will have to be addressed before overarching issues of efficacy – such as the development of more cost-effective interventions, better delivery strategies, improved management practices, and evidence-based HBC evolution – can be tackled. It has therefore been suggested that home-based care should not be promoted as a ‘quick fix’ solution to caring for people with HIV or as a way for governments to shift their responsibility as the provider of care. Most carers’ work continues unnoticed and unrewarded by outside authorities, leaving many to suffer physically and mentally. Therefore, investment and development in care-giving at home – provided both by home-based care groups and primary caregivers – is required if the burden is not merely to be shifted from the more formal healthcare sector to people’s homes. There are numerous benefits that care in the home can provide and these should be realised to their full potential.
This chapter has discussed both the advantages and disadvantages of different methods used in Zimbabwe and the UK in dealing with service users infected and affected by HIV/AIDS. Even though social work practice is mainly done by professional social workers in the UK, the study revealed that non-professional healthcare workers can also do the same job in a different way, even though there are some weaknesses to the latter. Therefore, non-professional healthcare workers in the UK need to be recognised as being key to the development of the delivery of services, and need to be respected and given all the credit they deserve, as a lack of qualifications does not mean that they cannot do the job. There is also the need for palliative care social work to be recognised in mainstream discussions and literature about social work to encourage prospective and already-qualified social workers to want to be involved in palliative care, as many social workers prefer child social work, thus leaving palliative care with a shortage of social workers. In Zimbabwe, even though the healthcare systems are unable to take on the full burden of care, home-based care should not be regarded as a solution to their problems. This is because of the weaknesses which have been discussed in the above chapter. The Zimbabwean government therefore needs to improve the working conditions, benefits and salaries of its professional workers in order to retain them.
In conclusion, the report has shown that there is an increasing recognition that prevailing ideologies of masculinity and femininity facilitate HIV transmission and that the promotion of more equal gender roles is the key to preventing HIV infection and ultimately the negative impacts of AIDS. It is therefore crucial for social workers and other healthcare workers not only to address stereotyped gender roles, but also to redress some of the stark structural inequalities between men and women, including the unequal distribution of economic resources and differentials in access to education and health provision, as they have an ethical obligation to combat the numerous injustices connected with AIDS.
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