Gendered Imbalances in AIDS-Related Burden of Care: Lessons from Lesotho

This article reflects on the gendered burdens of AIDS-care within the family, and some of the difficulties in redressing them. It demonstrates the need for research-driven initiatives towards quantifying the gendered inequities in the burden of care, using Lesotho as case study. The article accentuates the gender aspects of AIDS burden of care, pointing to familiar problems: the difficulties of making women visible; prioritising their needs; and tackling the disadvantages and inequities which women systematically suffer. These problems underscore the importance of mainstreaming women in AIDS-related research in all ramifications. Such research will help to make women visible, highlight their needs, and bring into the frame of analysing shadowy realms of AIDS on households. While the findings of this study are essentially situated in the Lesotho context, their far-reaching implications for the Southern African region and indeed the African continent are adequately highlighted. Keywords: Lesotho; HIV/AIDS; burden of care; women; gender equality; households.






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Publication: Gender & Behaviour
Author: Olowu, Dejo
Date published: June 1, 2012

Introduction

In the Kingdom of Lesotho (Lesotho), when a person falls sick with AIDS, the main site of care is the home, and the main providers of care are family members. Hypothetically, there are potential advantages from this arrangement. Being at home can be comforting for the sick person. Loved ones might be able to provide more tender attention than hospital staff. Caring for the sick at home is also commended as customaiy, and certainly repudiates the stigma often associated with HIV and AIDS (McDonnell, Brennan, Burnham and Tarantola, 1994; Ogden, Esim and Grown, 2006). But in Lesotho, perhaps the greatest virtue of care by relatives at home is necessity. Hospital beds are few, often inaccessible, and AIDS is already taxing hospital facilities in the major centres. The prevalence of HIV/AIDS is increasing, and the limited introduction of antiretroviral therapies from mid-2004 is not likely to significantly reduce AIDS-related morbidity or mortality in the foreseeable future, particularly among adults (UNAIDS, 2011). The diminished capacity of many countries' health sectors means having people with HIV cared for at home, or home based care, can be more appealing to governments than treating them at hospital. The growing need to support families and communities in what is called 'community-based care' is thus becoming a widely known phenomenon (Arno, 1986; Kalibala and Kaleeba, 1989; WHO, 2002; Mamaila, 2005). This article reflects specifically on the gendered burdens of AIDS-care within the family unit, and some of the potential difficulties in redressing them. As UNAIDS stated in its campaign document, HIV and AIDS have significantly increased the burden of care for many women. Poverty and poor public services have also combined with AIDS to turn the care burden for women into a crisis with far-reaching social, health and economic consequences'(UNAIDS 2004: 2). Furthermore, in Lesotho, AIDS increases the burden of care for women. While the observable consequences of this burden are many, the potential effects upon the health of women and girls alone deserve attention. Although mainstreaming gender and HIV/AIDS is necessaiy, this article contends that the gendered burden of AIDS-care highlights the prior importance of making women the focus of development, public health, poverty reduction policies and programmes in Lesotho.

Methods

For theoretical purposes, this study considers existing literature on AIDS-related burden of care. The discussion also makes use of the data published at intervals by the Government of Lesotho, governmental bodies, international development institutions and non-governmental organisations (NGOs) as well as scholarly works on relevant aspects of HIV/AIDS. It relies on first-hand observations as well as data gathered from semi-structured interviews administered in 240 households across 10 of the 13 districts in the Kingdom of Lesotho in the last quarter of 2011. The empirical nature of the study allows for a verifiable basis for understanding the inequities in AIDS-related burden of care in Lesotho. Three different but recurring settings leading to dependence were observed in the course of the study, namely, vertical transmission; horizontal transmission; and isolated transmission. While these three different settings are useful for analytical purposes, they by no means capture all the possibilities and many variations within these paradigms are possible. What follows is a discussion of the observations and the implications for research-based policy and strategic responses in Lesotho.

Overview of HIV/AIDS in the Lesotho Context

The first HIV case was reported in Lesotho in 1986 and, over the past years, the numbers have grown exponentially (National AIDS Commission, 2010a). By 2003, the prevalence rate had hit 28.9 per cent; up to 30 per cent in 2004; with empirical data estimating that some 290, 000 adults were living with HIV/AIDS in Lesotho as of 2009 (USAIDS, 2010; UNAIDS, 2011). It is relevant to note that over 70 per cent of new HIV cases are diagnosed at the Lesotho national referral centre, the Queen Elizabeth II Hospital, and that testing is very limited in many rural districts of Lesotho.

The available data indicate that the predominant mode of transmission is through unprotected heterosexual intercourse, with perinatal transmission being the second most common mode. Transmission through injecting drug use has not been recorded to date and only few cases of male-to-male transmission have been reported. The majority of cases are aged 25-29 years (39.1 per cent) and the number of persons diagnosed in the 10-19 age group has increased significantly over the past few years (Ministiy of Health and Social Welfare (MOHSW)/ Bureau of Statistics, 2004; USAID, 2010; UNAIDS, 2011).

Lesotho has a high prevalence of curable sexually transmitted infections (STIs), the rate having been estimated to be 10.6 per 1000 people (Ministiy of Health and Social Welfare (2006); National AIDS Commission, 2010b). This high community prevalence is a major risk factor for transmission of HIV and, in addition, it indicates that many people engage in unprotected sexual intercourse. A community-based study conducted among 7500 people in Lesotho once found that 28.4 per cent had undiagnosed Chlamydia trachomatis (Colvin and Sharp, 2000), and a later study of sex workers in Maseru and Quthing further found a syphilis prevalence of 43 per cent (Waterman and Penceliah, 2008) while another government survey in 2009 showed that syphilis was present in all the countiy's ten districts with its prevalence ranging from 0.6% in Butha-Buthe to 3.7% in Mafeteng (National AIDS Commission, 2010). Little wonder that UNAIDS (2011) estimates that the current rate of new infections is between 35%-62% in Lesotho.

Although HIV sero-surveillance is limited due to lack of resources, the studies conducted to date do provide some valuable information. A survey of 120 female commercial sex workers in Lesotho found a prevalence of 20 per cent (Maseru) and 5 per cent (Quthing) (WHO, 2005). Annual surveys of new patients attending the STD clinic at Queen Elizabeth II Hospital show a rising prevalence, reaching 23.6 per cent in 2008. Among antenatal patients attending the hospital, the prevalence had reached 16-42 per cent in 2008 (National AIDS Commission, 2010a). The United States' President's Emergency Plan for AIDS Relief (PEPFAR) (2010) estimates that the Lesotho Defence Force in 2009 had a prevalence of 30 per cent. Among healthy blood donors, the rate in 2004 was 6.3 per cent; by 2007, it had reached 43.3 per cent (Government of Lesotho, 2010a).

In 2009, AIDS was reported as the leading cause of death in medical wards at the countiy's hospitals and clinics (Government of Lesotho, 2010a). A nation with an estimated population of 2.2 million (Population Reference Bureau, 2011), had a cumulative total of 14 000 AIDS-related deaths by the end of 2010 (UNAIDS, 2011).

The HIV/AIDS epidemic is already well established in Lesotho and will require sustained and effective interventions among all sections of the community to reverse the trend. Despite the scale-up interventions, predictions on the course of the epidemic have indicated a rise in AIDS-related deaths in Lesotho which may further worsen its development processes (Bongaarts, Pelletier and Gerland, 2009; United Nations, 2009).

The Government of Lesotho had, in the countiy's 2004 Poverty Reduction Strategy Paper, painted the realities in vivid detail:

The prevalence rate of HIV and AIDS amongst adults of 15-49 years has risen in Lesotho from 4% in 1993 to 31% in 2002, which is one of the highest in the world. It is estimated that 70 people die each day in Lesotho as a result of AIDS, and yet the cause of such deaths is still not openly acknowledged despite increasing awareness. It was estimated that, out of a total population of two million in 1999, Lesotho already had over 90,000 AIDS orphans. These numbers will grow dramatically over the next decade. The increasing mortality rate means that Lesotho's population will stagnate by 2015, with disproportionate numbers being old and young people. Overall life expectancy has already declined from a high of about 60 years to 54 years, and it will continue to decline. The World Bank estimates that by 2015 the GDP of Lesotho will be reduced by almost one-third as a result of HIV and AIDS. Without forthright measures by a range of stakeholders, HIV and AIDS will exacerbate poverty and undermine any hope for improving the welfare of Basotho (Government of Lesotho, 2004, p. xx).

Impact of the HIV/AIDS Epidemic on Lesotho Households

Lesotho is not the only Southern African Development Community (SADC) countiy to report a generalised epidemic of HIV/AIDS. Since 1986, when the first case of AIDS was reported, empirical statistics indicate that some 300,000 persons out of Lesotho's population of 2.2 million are currently living with HIV/AIDS (USAID, 2010; UNAIDS, 2011). Some observers predict that the prevalence of HIV could exceed the levels of the worst-affected Sub-Saharan African countries, where between a quarter and a third of the adult population is infected (Chirwa, Greeff, Kohi, Naidoo, Makoae, Dlamini, Kaszubski, Cuca, Uys and Holzemer, 2009).

It is axiomatic that sexual intercourse between a man and woman and the gestation, deliveiy and nurturance of an infant by its mother are two of the foundational relations of family life. These are also the intimacies through which HIV is commonly transmitted in Lesotho. As doctors in Lesotho recognise, AIDS is a 'family disease' (Mburu and Naidoo, 2004). Although 'family' and liousehold' are problematic terminologies, because in practice they are fluid and can vaiy enormously, this article considers those relations that make a woman a 'mother' and in some sense of the word a Svife' central to both. Three different settings depicting the pathways of HIV into family relations in Lesotho are analytically useful, although they are by no means exhaustive of all the permutations.

First Setting: Doctors believe that most HIV-positive women in Lesotho have been infected by their husbands or sole partner (Barai, Adams, Lebona, Kaibe, Letsie, Tshehlo, Wirtz and Beyrer, 2011). Vertical HIV transmission can then occur from the wife to their baby. In this sequence, the first sign of HIV being present in a family is likely to be the sickness and death of an infant due to AIDS. Though the virus suppresses fertility, it is common for the HIV-infected mother to have more than one baby dying of AIDS before she herself dies of the disease. Usually, her husband may also have died of AIDS before her.

Second Setting: Since women (in Lesotho and eveiywhere) tend to become infected at a younger age than men, some women, having contracted the virus earlier, may subsequently mariy an HIV-negative husband. Again, the first sign of HIV in the family is likely to be their infant falling sick and dying of AIDS (Olowu, 2011). The mother may or may not have more babies, some of whom might also become infected and die. She too will die, but her husband, if he remains uninfected (and the chances of an HIV-positive wife infecting her partner in a single act of unprotected intercourse are fewer than the other way around), may well survive her and be able to help support any surviving children.

Third Setting: A family member can become infected, and eventually fall sick, without the virus passing from him or her to another family member. This is often the case when a son or daughter, without a partner or children, falls sick with AIDS and relies on parental family for care, but many variations within this situation are possible.

Related to all three settings, but especially to the first and second, is a hybrid - Fourth Setting - in which the family dependants of a man, or a woman, or a couple who died from AIDS, join another household for support and survival. These refugees may be elderly persons; the AIDS widow or a widower, with or without children; or orphaned children. Some of these orphans may also be HIV-infected, and require much care from the new household when they too fall sick. The plight of AIDS orphans has already received some scholarly interest in Lesotho (for example Worku, 2003; Barai et al, 2011). Often these children do not find a home in another household, and suffer relative neglect when they do. Going by anecdotal evidence, orphans infected with HIV are harder to place in a new household than the uninfected (Mamaila, 2005).

AIDS and the Burden of Care in Lesotho

Traditionally, women in Lesotho, as in most other societies, provide most of the care for children, the infirm, and the sick. They are also recognised as the main carers, within families, of people with AIDS (WHO, 2002; VSO, 2006). Yet, while AIDS care in families needs more research in Lesotho, some published discussion tends to discount the burden that women are likely to shoulder. A number of reasons may contribute to this underestimation. It is easy, for instance, to overlook the way in which AIDS typically clusters in families and sequentially manifests in members, so as to make AIDS an unusually demanding family condition for women to care for. Within the family, the father, for many complex reasons (to be further discussed below), may also find it difficult to contribute to day-to-day care. Moreover, although households ideally belong to a network of reciprocal relations with other households and these relationships can be activated for help, the amount and kind of help available can be limited by factors such as poverty and the degree to which other kin believe they are obliged to render assistance to those who need it.

Ranotsi and Worku's thoughts on the capacities of households in Lesotho to cope with AIDS can demonstrate some of these difficulties (Ranotsi and Worku 2006). They rightly argued that the diversity of circumstances in Lesotho and people's ability to respond creatively to the impacts of AIDS must be recognised. Although Cooperative for Assistance and Relief Eveiywhere (CARE) (2005) was mainly concerned with the effects of AIDS on household subsistence production, its discussion inevitably referred to the ways in which families might cope with the needs of an AIDS-afflicted member for care. Because studies relating to the impacts of AIDS on Lesotho households were (and are still) lacking, some commentators have argued from analogies (for example, Worku, 2003; CARE, 2005; Harrison, Short, Tuoane-Nkhasi and Hlabana, 2010).

One set of analogies used by Ranotsi and Worku (2006) derived from Elizabeth Eldredge's ethnography of the degenerative disease typhus, which occurred among the BaSotho people of the eastern highlands and only affected women, usually later in life (Ranotsi and Worku, 2006; Eldredge, 1987). Eldredge had described how, in much of the nineteenth century, many BaSotho men assumed a range of female roles when their wives became incapacitated with typhus, among several other epidemics in the 'mfecane' era - including childcare and nursing the sick wife. By analogy, one could suppose that men confronting AIDS might well assume female roles, and also care for their children and wives who are sick with AIDS - thus contributing to care and ensuring the survival of the household as an entity. In support of this analogy, anecdotally, and from personal observation, there are examples of men in Lesotho who have tenderly cared for women, children, as well as men with AIDS, and also stories of HIV-negative husbands who have cared for wives and children who had AIDS.

But there is also significant anecdotal evidence to the contraiy, and at important points the analogy between the response to and the response to AIDS breaks down. First, for husbands to take a female role in family care, they have to be present. Due to labour migration, formal or de facto polygyny, and in some places continuing habits of sexually segregated accommodation, men are not always co-resident with their wives and children or even nearby. Moreover, in the first setting, which appears to be the most common pattern for the occurrence of AIDS within families in Lesotho, by the time the wife or mother is sick with AIDS, at which stage the family may be in desperate need for a prime-aged adult to help in her care and to keep the remaining members of the household together, the husband is already dead.

Second, men have to be willing to assume female roles in care. Despite the previous example of some BaSotho men, the gendering of care as 'something affecting all married men' has already been noted elsewhere as an obstacle to the involvement of men in HIV/AIDS counselling and home care (Akintola, 2006). Added to the force of cultural barriers, are psychologically complex factors in the case of a man who later learns that he has infected his wife, and through her their infant or infants, or for a man who had known at the outset he was HIV-positive and did not protect his wife. Anecdotally, men often find it hard to deal constructively with their role, or potential role, in infecting their families with HIV, and this is a major challenge for those involved in HIV and AIDS counselling. At any rate, when AIDS occurs in the family, gender roles are already in place and precedents established for the work of care to primarily be the labour of the wife/mother, with help from her female kin.

The nursing requirements of a person with AIDS, and the sequencing of the disease among family members, must also be appreciated when calculating the female burden of care. As AIDS requires intensive nursing for a relatively long period, the needs of caring for just one family member with AIDS can demand considerable time and effort over and above the more usual and sometimes intermittent calls on a woman for care. In the first and second settings, it is likely that she will have cared for more than one family member with AIDS before she herself gets too sick to continue, and will no doubt by then have been exhausted by these demands.

A sick woman may, sadly, receive a lesser standard of care than that she gave to others when she was able. Going by observable indices, many women in the first setting, who have carefully nursed their children and husbands with AIDS, do not receive a similar quality of care when they themselves fall ill. Much depends on whether a woman's own mother is alive, nearby, and well enough to care for her, or if she has daughters capable of helping. Unfortunately, by this stage, the ability of the remaining members of a family to call upon aid from kin may be limited by the fact that much of the (sometimes scarce) help that could be given has already been exhausted in caring for the husband who was sick with AIDS before her. Moreover, the sick woman's social standing may have shrunk with her widowhood and the diminution of her immediate family. These are the severely straitened circumstances in which a grandmother and her granddaughters may often tiy to do their best for a dying woman.

Matrix of Female Health and Home-Based Care

While the impacts on a household of having a member, or a series of members, afflicted with AIDS, are myriad and far-reaching, the burden of care has complex consequences specific to women, including consequences for their own health. With HIV/AIDS increasing in its effects on major indices of public health in Lesotho, the epidemic compounds the social dynamic in which women's health was already faring poorly. Female life expectancy in Lesotho continues to be shorter than men's. Maternal mortality continues to be high. By some indications, rates of infant mortality may have increased over the last decade (Barai et al, 2011; Population Reference Bureau, 2011). Two basic reasons for the disappointing health status of women in Lesotho are, frankly, that they are overworked and undervalued (CARE, 2005; Olowu, 2011).

The expectation that women must care for others often combines with their limited powers for making executive decisions about family health (these tend to be a male prerogative) and other demands upon their time and energy, particularly in agricultural labour. As a result, women's opportunities to care for themselves can be limited. The greater cultural value attaching to men rather than to women, and the cultural value attached to procreation, means that the needs of men and children for care take precedence over women's. Women, too, subscribe to a hierarchy of values that places their own needs last. In the case of an HIV-positive mother, who has contracted the virus from her husband and has cared for babies with AIDS and a husband with AIDS before she herself fell ill, this ideological order of precedence is confirmed and paralleled by the actual chronological sequence of the disease among family members. Her needs for care come last in both contexts.

The additional burden of providing AIDS care will almost inevitably, for many female caregivers, further erode their own health. A quarter of a centuiy ago, Eldredge (1987) noted that any measures to improve family health that require women to do additional work should be carefully considered. Since women already work so hard, further demands upon them, if not countered by forms of avoidance, might only further compromise their health. As examples, Eldredge referred to the extra demands placed on mothers with respect to recommendations for infant feeding (Eldredge, 1987). The demands of caring for someone in the family with AIDS are infinitely greater.

These demands also have consequences for the care received by other family members, especially female. Grandmothers, though they may be called upon to assist in the provision of care when a family member has AIDS, may themselves be in need of care while receiving less. A mother caring for a person with AIDS will not be able to give as much attention to her other children either, who are therefore more likely to die of disease and deprivation (McDonnell et al, 1994; Ogden, 2006; Orner, 2006). Again, given the higher cultural value attached to males than females, it is likely that female children, though they (like grandmothers) will be called upon to help their mother, will also suffer more health-wise from differential neglect.

Thus 'community-based care' may in many circumstances prove to be a euphemistic way of referring to the fact that AIDS places on women veiy great burdens of care, detrimental to their own health, while delivering to women and girls an inferior level of care when they themselves need it. A comment by Carolyn Baylies on community-based care in sub-Saharan contexts has some resonance with the situation in Lesotho: To the extent that HIV feeds on structured inequalities and power relations (not least around gender), reliance for assistance on structures and mechanisms which reinforce rather than challenge those inequalities is of questionable value' (Baylies, 2002:624).

A Dynamic Social Problem

The Lesotho National HIV/AIDS Strategic Plan 2006-2011 recognised that 'the responsibility for home care of AIDS patients will increasingly fall on women' (Government of Lesotho, 2006), and predictably the current Lesotho National Strategic Development Plan 2012-2017 will give more attention to the evolving issues of care (Government of Lesotho, 2011). Nevertheless, for a number of reasons, the greater female burden of care will almost inevitably remain a relatively neglected and extremely difficult issue.

First, the issue is not a topmost priority. Understandably, the needs of AIDS sufferers for care receive more attention and advocacy than the needs of carers for recognition and support. Second, there are strong economic incentives to overlook or discount the costs, especially to women, of home care, because from the government's viewpoint it is the most cost-effective approach to the care of AIDS sufferers. Third, cultural justifications for this approach as 'Sotho' or 'Christian' also invoke a rhetoric of sharing and caring that disguises shortfalls, gender inequities or breakdowns in kin-based deliveiy mechanisms (Shanafelt, 1989).

Yet, even if there is a will to examine the issue and respond, practical difficulties intervene. The household falls outside many common frames of economic analysis and is simply hard for evaluation purposes. Thus a report on the potential economic impacts of the epidemic in Lesotho acknowledged that large consequences flow from the effects of AIDS on households, but data concerning household responses are scarce (Khobotlo, Tshehlo, Nkonyana, Ramoseme, Khobotle, Chitoshia, Hildebrand and Fraser, 2009). With households in shadow, so too much of women's lives and work remain shadowy. Also because households are many, varied and mutable, they are difficult objects for governments and large organisations to target and differentially assist (Government of Lesotho, 2000, 2010a and 2010b). Making AIDS the criterion for assistance to households raises difficulties too. Why should one household with an AIDS-sufferer receive relief, and another household with a member chronically sick or severely disabled for other reasons receive nothing? Lastly, a number of interventions, designed specifically to assist women, often lose their gendered focus. One example is a particular respite centre, originally founded with the aim of helping women with AIDS, but because men wanted to use it, and women were happy to share, the centre now caters for both sexes.

Conclusions

This article proceeded from the underpinning premise that although women provide most of the care for their family members who are affected by AIDS, they are yet to be recognised as the main carers within families of people with AIDS. While the impacts on a household having a member, or a series of members, afflicted with AIDS, are myriad and extensive, the burden of care has complex consequences specific to women, including consequences for their own health. It becomes obvious that AIDS care in families needs more research as discourses on the burden that women bear and/or are likely to bear are scanty not only regarding Lesotho, but elsewhere. The gendered dynamics involved in the burden of AIDS care points to old, familiar problems: the difficulties of making women visible; prioritising their needs; and tackling the disadvantages and inequities which women can systematically suffer.

These old problems moreover underscore the importance of mainstreaming women in basic research. Such research can at least help to make women visible, highlight their needs, and bring into the purview of investigation obscure realms such as the household and family settings. It can also, in the case of AIDS, challenge the inclination to subject the disease to strait-jacket classification in ways that make it hard to appreciate how the experiences, for instance, of giving care and being sick can converge on a woman. 4Mainstreaming' gender into policy and programs will amount to an empty gesture if it cannot draw on such research, and if it distracts attention from the need for such research to be done.

Far from being an ex cathedra pronouncement on all the dynamics that should inform the repositioning of women and gendered considerations in the AIDS burden of care equations in Lesotho, and indeed elsewhere, this article would have served its purpose it stimulates further intellectual enquiiy.

Acknowledgements and Disclaimer

This material is based upon work supported by the National Research Foundation (South Africa). Any opinion, findings, conclusions or recommendations expressed are solely those of the author.

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Author affiliation:

Dejo Olowu*

Research Professor

Public Law & Legal Philosophy

North-West University, Mafikeng Campus

South Africa

Author affiliation:

* E-mail: djolowul@yahoo.co.uk

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