Global Public Health An International Journal for Research, Policy and Practice
ISSN: 1744-1692 (Print) 1744-1706 (Online) Journal homepage: http://www.tandfonline.com/loi/rgph20
Synergistic vulnerabilities: Antiretroviral treatment among women in Uganda Margaret S. Winchester To cite this article: Margaret S. Winchester (2015) Synergistic vulnerabilities: Antiretroviral treatment among women in Uganda, Global Public Health, 10:7, 881-894, DOI: 10.1080/17441692.2015.1007468 To link to this article: http://dx.doi.org/10.1080/17441692.2015.1007468
Published online: 03 Feb 2015.
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Date: 05 November 2015, At: 16:06
Global Public Health, 2015 Vol. 10, No. 7, 881–894, http://dx.doi.org/10.1080/17441692.2015.1007468
Synergistic vulnerabilities: Antiretroviral treatment among women in Uganda Margaret S. Winchester* Department of Geography, The Pennsylvania State University, University Park, PA, USA
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(Received 5 December 2013; accepted 14 November 2014) Despite being an early success story in the reduction of HIV infection rates, Uganda faces myriad challenges in the recent era of accelerated antiretroviral treatment (ARV) scale-up. For those able to access treatment, ongoing vulnerabilities of poverty and violence compound treatment-related costs and concerns. This paper explores experiences of one particularly vulnerable population – women on ARVs who have also experienced intimate partner violence (IPV). Data were collected over 12 months in Uganda. They include ethnographic interviews (n = 40) drawn from a larger sample of women on ARV and semi-structured interviews with policy-makers and service providers (n = 42), examining the intersection of experiences and responses to treatment from multiple perspectives. Women’s narratives show that due to treatment, immediate health concerns take on secondary importance, while other forms of vulnerability, including IPV and poverty, can continue to shape treatment experiences and the decision to stay in violent relationships. Providers likewise face difficulties in overburdened clinics, though they recognise women’s concerns and the importance of considering other forms of vulnerability in treatment. This analysis makes the case for integrating treatment with other types of social services and demonstrates the importance of understanding the ways in which synergistic and compounding vulnerabilities confound treatment scale-up efforts. Keywords: medical anthropology; Uganda; HIV treatment; intimate partner violence
Introduction Over the past three decades, the reality of living with HIV/AIDS has shifted dramatically, though asymmetrically and disproportionately across the globe (Biehl, 2007). Most recently, with the advent of highly active antiretroviral treatment (ARVs), HIV infection has been likened to living with a chronic disease (Kendall & Hill, 2010; McGrath et al., 2014; Russell, Seeley, & Whiteside, 2010; Vitoria, Vella, & Ford, 2013). What was previously a death sentence has become manageable. With high levels of medication adherence and proper nutrition, viral suppression can lead to the resumption of a so-called ‘normal life’ and decrease the chances of further transmission (Forsyth & Valdiserri, 2012). Nonetheless, with treatment reaching only 34% of those eligible, treatment rollout continues to lag behind global targets under the most recent World Health Organisation (WHO) guidelines (UNAIDS, 2013a; Vitoria et al., 2013). WHO guidelines recommend early treatment initiation and act as the minimum standard for implementation, but are interpreted and carried out differently across the globe. Coverage for women eligible for *Email: [email protected] © 2015 Taylor & Francis
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treatment is significantly higher worldwide than for men (73% compared to 57%) (UNAIDS, 2013a). As discussed below, Uganda has made great strides in treatment rollout, though it is still subject to funding contingencies, structural issues within clinics and the economic and social demands of treatment faced by individuals. While women access ARVs in greater numbers than men, persistent gendered challenges of poverty, economic dependence and also violent or conflictual intimate relationships highlight the complexity of long-term treatment. Social and economic vulnerability interact synergistically to shape women’s experiences of illness and treatment. Women’s vulnerabilities while on treatment are often understood by individual providers, but currently not formally addressed in medical settings. This paper examines women’s narratives of treatment experience, as well as perspectives from their medical providers. These narratives and perspectives illustrate how issues of violence, poverty and treatment interact as forms of ‘synergistic vulnerability’ to create a complex social context of illness management. Additionally, due to high rates of intimate partner violence (IPV) and the fact that women are accessing treatment, a case is made for integration of services to improve experiences of care and the likelihood of sustained treatment. Background and framework Vulnerability and HIV While contested across disciplines, the concept of vulnerability generally refers to a susceptibility to harm from exposures and stresses, which can manifest itself in social, cultural, legal and economic ways (Strathdee, Wechsberg, Kerrigan, & Patterson, 2013). Discussions of vulnerability and HIV often centre on risk of infection and targeted prevention measures. HIV infection itself can make individuals more vulnerable to other adverse health outcomes, as well as negative social and psychosocial impacts (Jewkes & Morrell, 2010). Gender inequality can act as one form of vulnerability, decreasing women’s ability to make decisions about their own healthcare and to have control over sexual encounters and relationships (Gupta, Ogden, & Warner, 2011). As Gupta et al. (2011) suggest, gendered vulnerability to HIV is entrenched in a nexus of structural constraints, economic dependency and harmful gender norms. Globally, women remain particularly vulnerable to social and economic hardships emerging from and related to HIV infection. Their marginality has been documented across settings and persists despite higher numbers of women than men accessing ARVs (e.g. Go et al., 2003; Gupta & Weiss, 2009; Hirsch, 2007; Kelly et al., 2003; Nyanzi, Emodu-Walakira, & Serwaniko, 2009; Rwabukwali, 2008; UNAIDS, 2013a). Postinfection, women are burdened heavily due to their roles as caregivers and their limited economic power in places like Uganda. Gender-based violence, including IPV, can intersect with HIV in many ways, including through greater risk of infection, fears of disclosure and long-term difficulty accessing resources to initiate and remain on treatment (Dunkle et al., 2004; Jewkes et al., 2006; Karamagi, Tumwine, Tylleskar, & Heggenhougen, 2006; Koenig et al., 2004; Krishnan et al., 2008; Krug, Mercy, Dahlberg, & Zwi, 2002). As with the women in this study, violence can both precede and follow HIV infection, diagnosis and treatment. Gender-based violence, in its many forms, can contribute to stressful environments and interact with other predictors of poor health outcomes, including depression, alcohol use/abuse, lower decision-making power, lowered overall immunity and decreased social support (Kim et al., 2007; Dunkle et al., 2004; Jewkes et al., 2006; Koenig et al., 2004).
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Different types of vulnerability interact, creating greater potential for poor outcomes and greater stress. I refer to this interaction as ‘synergistic vulnerability.’ Similar to the biological interactions in syndemics, the social dimensions of HIV are co-constructed and mutually reinforced (Singer, 2009). In this study’s population, HIV infection, IPV, poverty, gender imbalances and policies interact and influence the overall experience of ARV seeking. Women’s stories highlight the economic dimensions of social vulnerability and the significance of both in their access and experiences of ARV. Control over economic assets has been shown to be a significant factor in HIV-related resiliency in other settings (Gupta et al., 2011; Kim et al., 2007). These interactions and experiences are uniquely shaped by and grounded in the social, political and economic context of Uganda, though they also have commonalities with other low-income settings. Clinical and structural considerations ARV programmes are frequently the first large-scale chronic disease programmes in developing countries (Rabkin & El-Sadr, 2011). Global funding decisions and local politics shape the abilities of clinics to respond to treatment demands. Challenges to rollout, then, often play out in clinic settings, highlighting structural, technological, personnel and supply issues, making the impacts of treatment programmes heterogeneous and ‘deeply contextual’ (Rabkin & El-Sadr, 2011). Within clinic settings, the requirements for antiretroviral rollout are demanding and comprehensive, including medical record systems, counselling, support, outreach and integration of services (Rabkin & El-Sadr, 2011). These place demands on medical professionals as well as patients. Counsellors act as the ‘point of negotiation’ between global standards and implementation with persons living with HIV and are frequently charged with imparting the discourse of strict adherence to treatment to their patients. With regard to patients, Richey (2012) writes: if patients are to become clients of an ARV programme, or therapeutic citizens, then they must embrace an ideology of individual responsibility that rests upon the view of an individual that can be disentangled from the social, political and cultural processes around them. (p. 841)
Despite attaining high levels of adherence, patients are often unable to ‘disentangle’ themselves from the social dimensions of the disease. The clinic necessarily remains a space of limited scope, as individuals continue to contend with other challenges and vulnerabilities apart from or generated by treatment (Bernays, Rhodes, & Terzic, 2010; Kalofonos, 2010; Mattes, 2011, 2012; Russell et al., 2007). Despite the higher numbers of women accessing ARVs, the interaction of economic and social vulnerability makes them an important target for the potential integration of services. In other settings, health services have been shown to be effective settings for the prevention of IPV (García-Moreno, 2002). In cases where illness can exacerbate ongoing violence, this is particularly salient. However, as will be seen in data from the Ugandan context, providers, while often aware of their patients’ difficulties, are limited in their capacities to respond. Ugandan context Early in the HIV epidemic, Uganda was one of the hardest-hit countries. Through a combination of governmental public awareness campaigns and education, international
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support and epidemiological factors, the country was, by the early 2000s, the first to reduce the rate of HIV infection. Nonetheless, the reasons for this reduction remain controversial and have not led to a sustained reduction in HIV infection rates. In the past decade, the previously plateaued incidence has risen (Uganda AIDS Commission, 2012; Wawer et al., 2005). There are several alternative explanations for Uganda’s initially declining infection rate, other than the national prevention strategies. These include high mortality rates (Wawer et al., 2005), high fertility rates (Ibembe, 2009), traditional marital practices (Parikh, 2009) and the configuration of sexual networks (Thornton, 2008). All these theories configure risk differently for men and women, based on mobility and relationship patterns. In particular, polygyny and multiple concurrent partners can potentially increase women’s vulnerability through exposure to HIV, potential intimate relationship conflicts and decreased power to access resources, though this varies widely by relationship (Chirawu, 2006; Reniers & Watkins, 2010). At the time of data collection for the present study, 62.5% of the women reported ever having been in a polygynous union. Concerted international involvement in combating HIV in Uganda began in the late 1980s and early 1990s and focused on building diagnostic and testing facilities and prevention through education. The Ministry of Health is largely dependent on donor funding and its key targets continue to be driven by donors’ priorities; more than 75% of the national AIDS response is funded by outside sources (Ibembe, 2009; Meinert, Mogensen, & Twebaze, 2009; UNAIDS, 2013a; Whyte, Whyte, Meinert, & Kyaddondo, 2004). In developing its President’s Emergency Plan for AIDS Relief (PEPFAR) strategy, US policy-makers have highlighted Uganda’s prevention model, subsequently emphasising abstinence programmes as a core element in programmes receiving PEPFAR funding (Sussman, 2006, cited in Ibembe, 2009). The narrow funding focus on HIV has been criticised as neglectful of other diseases and the need for comprehensive infrastructure building in a country with high rates of poverty and death from other infectious diseases (Ibembe, 2009). Because of early prevention efforts and ongoing campaigns to raise awareness, HIV is now entrenched in daily discourses in Uganda. Billboards plaster urban areas and trading centres in rural areas encouraging faithfulness, promoting testing and treatment and targeting specific groups, such as those engaged in cross-generational sex. The Demographic and Health Survey in Uganda (Uganda Bureau of Statistics & ICF International Inc., 2012) has shown knowledge of HIV transmission and prevention is widespread. For prevention, 89% of women and over 90% of men over age 25 report that they know that limiting sex to one uninfected partner with no other partners can reduce their chance of contracting HIV. Knowledge of condoms as prevention is not as high, but still widespread among both men (more than 80%) and women (more than 70%). Due to shifting recommendations for earlier treatment initiation, estimates for antiretroviral coverage in Uganda range from 52% to 81% of those in need (UNAIDS, 2013a, 2013b; UNITAID, 2010; WHO, UNICEF & UNAIDS, 2011). As is the case globally, women access treatment in greater numbers than men. Recent evidence shows that among men and women in Uganda, the number of sexual partners is increasing and condom use is decreasing (UNAIDS, 2013a). Women’s rights in Uganda have been adopted slowly and inconsistently throughout the country; many women still face challenges in inheriting property and initiating divorce. Domestic violence only became a civil offence during the course of fieldwork in 2009 through the passage of the Domestic Violence Bill (previously it was illegal only if severe enough to constitute criminal assault), but had yet to be adopted into the police enforcement guidelines.
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Methods Data collection These data are drawn from fieldwork on the intersection of IPV and HIV treatment in Uganda, conducted over 12 months in 2008 and 2009. The study aimed to place vulnerable women’s experiences within local, national and global contexts of HIV infection. Data were collected in three phases and included screening surveys (n = 200) and nested ethnographic interviews (n = 40) with women on ARVs, and semi-structured interviews with policy-makers and service providers (n = 42), examining the intersection of experiences and responses to HIV treatment from multiple perspectives (Winchester, 2011). Data presented here are drawn from ethnographic interviews and those with service providers. The study was conducted in two regions of the country: the capital Kampala in the central region and Mbarara town in the southwest of the country – two large population centres in a country that remains mostly rural. While most of the clinic patients in Mbarara come from more rural surrounding areas, they may also not reflect the issues of treatment access in the country as a whole. Both these areas have high reported prevalence of HIV and IPV and were selected for this reason (Uganda Bureau of Statistics & ICF International Inc., 2012; Uganda AIDS Commission, 2012). A survey was adapted from the WHO instrument on women’s health and violence (WHO, 2002), applied among women receiving free ARVs at two clinical facilities, and used as a screening tool for further interviews. This instrument uses a checklist of partner behaviours to identify different forms of violence. Women were approached for the survey randomly at the clinics at stratified times throughout the day until 100 surveys were completed in each of the two clinics. Women were eligible if they were over age 18 and enrolled in treatment. Forty women (20 in each site) with histories of physical and sexual violence from intimate partners as identified through the surveys (38% of the sample) were purposively selected for follow-up ethnographic interviews, conducted in their homes or in a safe place of their choosing. These follow-up interviews focused on narratives of relationships and endurance, help-seeking behaviours for illness and violence and strategies for long-term maintenance of ARV. The two clinics involved in this study are among the largest distributors of ARVs in the country. Like many other clinics in the country, both are funded by a combination of government and multinational and bilateral donors. The clinic in Kampala was, at one time, the largest distributor of ARVs in sub-Saharan Africa. Centrally located, it still caters to thousands of patients in the capital region and holds a strong reputation for HIV-specific care and regular availability of ARVs, despite the sometimes shortened duration of time between drug refill visits. It is a busy space, but the large grounds are green and quiet. Following the period of data collection, the main clinic for this facility moved to the outskirts of Kampala and patients generally must travel much further than before. The clinic in Mbarara opened more recently, as one part of the regional referral hospital. It is located in central Mbarara; the large open waiting area fills early in the morning and there are long queues on clinic days. Both clinics are open five days per week and offer comprehensive services for men, women and children with HIV. ARVs are free, as are tests to determine CD4 counts. Prophylactic Septrin (cotrimoxazole), viral load tests, other laboratory tests and treatment for opportunistic infections are generally only available for a fee. Other stakeholders (n = 42) were selected purposively to represent a range of perspectives in terms of both position and location and include policy-makers, social service providers and clinical providers. Social service providers were selected from
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organisations providing support to vulnerable women in Kampala and Mbarara and included domestic violence awareness programme members, counsellors and women’s rights advocates. Clinical providers were drawn from the two clinics where women were recruited from the study and included nurses, counsellors, physicians and pharmacists. All interviews were conducted by the investigator and a trained research assistant. They were conducted in English, Luganda or Runyankole.
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Analysis For surveys and sample demographics, univariate and bivariate analyses were conducted using SPSS. Semi-structured and ethnographic interviews with women and providers were recorded and transcribed. Following an in-depth reading of the interviews, a thematic approach was utilised with both a priori themes and those emergent from the narratives (Ryan & Bernard, 2003). The a priori general themes for coding included relationships and marriage, gender role beliefs and practices, HIV testing, treatment experiences, work, seeking help for illness and violence and endurance or resilience processes. More detailed codes within each category were developed based on the narratives. Codes explored in-depth in this paper are those involving issues of treatment access, adherence, marital conflict and providers’ perspectives on challenges and barriers to treatment. Ethical considerations All participants gave written or verbal informed consent and were informed that their treatment would not be affected if they chose not to participate. Ethical approval was granted by Case Western Reserve University, The Joint Clinical Research Centre, Mbarara University of Science and Technology and the Uganda National Council for Science and Technology. All women participating were given information about services available in their community regardless of whether they disclosed a history of violence.
Findings Study sample Demographic characteristics of the 40 women selected for ethnographic interviews, based on their experience with IPV, are presented in Table 1. In an initial clinic-based survey of 200 women in Kampala and Mbarara, 38% of women reported ever having experienced physical or sexual violence from an intimate partner. For some, the violence preceded HIV infection, for others it began after diagnosis and for others violence was ongoing or episodic. A subsample of 40 women were selected to maximise heterogeneity in age and range of experiences. For each of these women, IPV and HIV management co-occurred at some point in time. The women in this sample have been on ARVs for an average of three years and range in age from 21 to 55. They have differing levels of education and marital status. More than 60% have ever been married. Many of those who are not married have longterm partnerships outside of formal marriage arrangements. More than half have had or currently have partners who they know to be HIV positive. These women reflect demographic characteristic of the overall Ugandan population, though their access to treatment makes them part of the fortunate minority of men and women living with HIV in the country.
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Table 1. Characteristics of nested sample of women on ARVs (N = 40). Age (years) Mean Range Highest level of education (%) No formal education Primary education Secondary education Tertiary/university education Marital status (%) Married Not currently married Widowed Ever been in a polygynous union (%) Ever been with a known HIV-positive partner (%) Time on ARVs (years) Mean Range
36.8 21–55 15 55 27.5 2.5 27.5 37.5 35 62.5 62.5 3.14 0.08–10
Experiences of treatment When asked specifically about their experiences on treatment, women’s responses were overwhelmingly positive and emphasised dramatic improvements in their health and productivity. When probed further, a few shared information about some of the early side effects and others spoke of some difficulties with their partners in staying on treatment. The greatest concern, by far, is not the direct effect of the treatment, but the context of relying on a constant supply of money to be able to access the medicine or to maintain a healthy diet. Many said worrying too much about having HIV was not good for their health, so they tried to focus on positive living. In the context of multiple and competing vulnerabilities – poverty, violence, sickness – treatment availability allows for the management of health concerns and integration of self-care into day-to-day life. Several times during the course of an interview, women would stop what they were saying mid-sentence, pull bottles of large pills and a water bottle out of their purses or go to their kitchens and take their medication at the precise designated time before finishing what they had been saying. Taking treatment is embedded in the normalcy of daily activities. Furthermore, most of the women are very invested in their own healthcare and status, knowing detailed information about dosing, types of medications and their CD4 count – sometimes despite being unable to read and write (see also Meinert et al., 2009). The local translation of CD4 cells is ‘soldiers’. Women told me their exact number of ‘soldiers’ at the beginning of the illness, compared to now, to illustrate the drastic changes. Many have undetectable viral loads and plan to keep it that way. A 36-year-old woman in Mbarara, while talking about her children, paused to take her medicine and resumed to tell me: I have not had any problems with medication. Actually to start medication, I had only 6 soldiers, but now I have 664 soldiers. I have never been sick since I started the medicine. Once in a while there is some fear. This is often due to seeing so many other people that have
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it pass away due to HIV. But even though there is some fear, there is a little comfort in knowing that the medications make us healthy and the fact that when we started taking them we knew we were taking them for life. So whether scared or not you just have to take it. (Age 36, Mbarara)
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Her ‘soldiers’ have increased dramatically and she has faith in the efficacy of treatment, but she still has some lingering fear from living with an incurable disease. She and the other women are not naively unconcerned about their HIV status, but rather have incorporated it into a daily routine and the initial sense of fear is no longer the most important thing in their lives. Most follow their doctors’ orders carefully and make great sacrifices to secure transport money to arrive at the clinic on their designated appointment dates.
Vulnerability context Taking medication is not the entire picture though. Women also need transport money to get to the clinic, proper nutrition to guarantee effectiveness of treatment and care for other members of their households and families. These issues emerged at the forefront of daily concerns and contribute to synergistic vulnerabilities. IPV affects economic dependency, which in turn affects treatment concerns and risks of poor adherence. Women frequently feel ‘tied’ to violent partners to cover the additional ‘costs’ associated with treatment. Poverty and money consistently remain concerns in deciding whether to stay in a relationship, in adhering to medication and in caring for children. One side effect of medication is an increased appetite, and at the clinics women are also instructed on proper nutrition to minimise negative complications from the sometimes difficult drug regimens. This increased appetite and need for food are great sources of stress, though stress is also something to be avoided, as advised by the counsellors. As one woman describes her outlook: When you over-worry, sickness seems to persist. You don’t work, yet you have to eat. The doctors tell you – you have to eat. Me, if I have I got money or a source of income that would be the least of my worries but now the whole problem is money. And I don’t spend my time thinking about the disease – I spend my time thinking about money. (Age 47, Kampala)
When talking about medication, most of the women had very little to say. They try not to worry, and focus on health instead of sickness. Another, echoing the worries of things that go along with treatment rather than treatment itself, describes her experience: For me to be on medicine, it has been ok. Other than issues like poverty, medicine is really not an issue. (Age 37, Mbarara)
Now that she is healthy, she worries about providing for her family more than medical side effects. The two primary reasons for physical violence in their relationships cited by women in the study are infidelity and alcohol, and often a combination of the two. Most attribute their HIV infection to their partner’s infidelity and their discovery of this leads to more conflict. Women reported men trying to block them from testing or refusing to test with them. After engagement in care, however, few of the women reported their partners being able to directly block or prevent access to antiretroviral medication. Instead, economic dependency leads to challenges of getting money for transport to the clinic or other associated costs of illness.
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Only two women reported interference or problems with their husband in regards to treatment. Neither woman had sought help for other issues in the marriage but did so once their health was involved. One said her husband was throwing away her medication, saying that since they were both positive, they should die together (he tested, but had refused treatment). The other said the husband took her medication, presumably for himself because he would not go to the clinic. Both reported the matter to the local government counsellor (LC) in their area, one in Kampala, another outside of Mbarara, and the LCs’ response of mediation was enough to resolve the issue. Though most are untrained, mediations with LCs typically involve meetings with each partner independently and then together. In Kampala, the LC told both partners of the benefit of taking medication for a happy and harmonious marriage. In Mbarara, the woman could not recall what the counsellor suggested, but recalled that his influence was enough to stop her partner’s behaviour. Neither of the women’s partners began taking medication, but both ceased to interfere with their wives’ treatment. One woman says of the situation now that she has gotten help: For me, I normally take [the medicine]. When I am supposed to come here [to the clinic for medication], I have to come. Whether it is what or what, I come. He doesn’t even stop me. He doesn’t interfere. (Age 38, Kampala)
Even in the face of ongoing physical, sexual or verbal violence, women reported staying with a partner who provides financially due to the costs associated with treatment. A 44year-old woman in Kampala was shocked when I asked her if she ever thought of leaving her marriage during the times when her husband was drinking heavily and beating her regularly. She responded strongly, There’s no way I can tell him to go because sometimes he gives me help. He gives me money for school fees for the children, so if I go or tell him to go, who will help me? Even for the house, he gives me money to pay the rent. So why should I tell him to go away? (Age 44, Kampala)
From women’s narratives, it is apparent that multiple forms of vulnerability interact and shape daily concerns on a shifting basis. Nonmedical concerns in medical settings The issues presented by medical providers were similar in both sites; in both Kampala and Mbarara, they spoke of the difficulties of a heavy workload and expressed similar concerns for their patients’ economic constraints. Staff at both clinics are stretched thin by large patient loads and limited resources. Though they may recognise that the clinic is a good setting to address social issues, including violence, other concerns remain central. All the providers interviewed spoke of women as having separate challenges from men for accessing and maintaining ARV. According to medical providers, the main challenges that women face are due to dependency on their partners and so are part of a larger context of poverty, dependence and gender organisation. Clinicians feel helpless to respond to these structural injustices and vulnerabilities and instead typically only discuss clinical concerns. Providers are sympathetic towards their patients’ issues, recognising that HIV treatment and illness management exacerbates women’s dependency on men for money – for transport or proper nutrition to mitigate side effects. On countless occasions, I witnessed clinic staff members reaching into their own pockets to assist needy clients,
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despite the official admonishment of this behaviour by both clinics. As one physician described,
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We had instances, within a period of two or three months, I may give transport to about four patients, my own money … so they sell a goat or they borrow money, and after you see them, they tell you they don’t even have money to go back. So if you have some money, you give it to them. And I’m sure all the clinicians here, we’ve done that a number of times. (Physician, male, Mbarara)
Economic concerns were by and large recognised as the most significant factor inhibiting women’s success on ARVs. Economic difficulties typically first impact adherence through a lack of money for transport, and, as seen above, clinicians often go beyond their prescribed duties to assist those who are the worst off. The other ramification of poverty for those on ARVs is insufficient nutrition. Side effects of treatment are exacerbated without proper nutrition. Most providers also recognise that poverty is gendered and most difficult for their female clients. Medical provider workload Systematic constraints within the medical system limit providers’ interactions with needy women and the resources they have to respond to issues outside of an immediate medical purview. The sheer volume of patients in each clinic is well beyond the ideal capacity of caregivers. One nurse in Kampala, in her late 50s, comments that nurses have always been busy, but in recent years it has become unmanageable. She views nurses to be ‘natural counsellors’ and enjoys visits where she can check up on the client’s personal life. She and every other clinician interviewed lamented their inability to engage beyond the medical, describing extreme situations where up to 250 patients are seen by one clinician in a single day, or a more typical load that can still include up to 70 or 80 patients (the described ideal is 20–30 per day for a comprehensive visit). One physician described his typical clinical encounter as rushed but in large part possible because of the success of ARVs in restoring health. He and other providers move quickly through clinic visits because patients are healthy and they are lined up outside waiting. Another nurse summed up her feelings of her hands being tied – the lack of staffing limits a clinical encounter to the bare necessities, not what she ideally wants to do. She says: If they are too many sometimes, you just do what you’re supposed to do, not what you want to do, like maybe talk to a client for another 10 minutes. You cannot do this because the line outside is so long and people have to go away to work. (Nurse, female, Kampala)
Patients are lined up, and she cannot discuss more in-depth issues, such as relationships or violence. Providers recognise poverty and compounding issues as significant in the scaleup of treatment, but are constrained by the structure of crowded clinics and rapidly expanding services. Their narratives imply an understood imperative to address social and economic concerns within the clinical encounter, if it were possible to do so – potentially through additional counselling or provision of some basic resources.
Discussion All the women in this study have faced a dual vulnerability of living with HIV and facing violence in their relationships. At some point, each of these women has faced additional
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compounding vulnerabilities and issues, including those directly related to treatment and poverty. Their narratives reveal treatment experiences that are largely successful, though still fraught with worry over potentially not being able to meet the treatment demands. These women are representative of the new era of HIV, in which the distribution of ARVs makes it possible for HIV to become a secondary concern. The dramatic results of treatment show the ‘Lazarus effect’ (Rabkin & El-Sadr, 2011) of rapidly regaining health and seemingly coming back from the dead. The women are engaged with their HIV care, particularly in regards to knowledge of treatment (Meinert et al., 2009). Nonetheless, other vulnerabilities and struggles remain. With the exception of two, the women’s partners have not interfered directly with treatment access, but create challenges for the women and impose economically dependent relationships. In fact, many choose to remain with violent partners for the sake of managing their health. These findings echo those of other recent studies in sub-Saharan Africa and elsewhere, where hunger, poverty and gender concerns persist despite national and international progress in making ARVs available and accessible (Bernays, Rhodes, & Terzic, 2010; Kalofonos, 2010; Mattes, 2012; Russell et al., 2007; Russell & Seeley, 2010). Service provision for HIV in Uganda has grown rapidly in recent years and thousands of men and women have access to life-saving drugs that were inaccessible until only a few years ago. The structure of global funding allows for local uptake and the rapid distribution of ARVs. The clinics are filled to capacity and clinicians stretched to their limit. Targeted funding perpetuates the narrow scope of HIV treatment programmes. Notably, the social dimensions of HIV, including gendered vulnerabilities and exacerbated economic dependency, are recognised by clinicians. However, due to the immediacy of clinical aspects of disease, non-clinical concerns do not find outlet in clinical settings, and providers struggle to attend to their patients with limited resources. These structural limitations to ARV rollout are hardly unique to Uganda and often play a large role in the distribution and experience of treatment across sub-Saharan Africa (Marsland, 2012; Mattes, 2012; Nguyen, 2007, 2010). As has been argued elsewhere, one key to improving treatment outcomes and reducing overall vulnerability in women living with HIV is to address issues of violence and economic disparity (Gupta et al., 2011; Krishnan et al., 2008). True integration of services is rare and difficult to achieve, largely due to structural and funding constraints of vertically funded programmes. Nonetheless, the clinic remains a point of contact for many women living with HIV and would be an ideal location for facilitating and integrating services to address violence response and prevention as well as sources of economic empowerment. Conclusion These data speak to the complicated nature of HIV rollout within the Ugandan context. The history of HIV in the country has made treatment availability a reality, but ongoing IPV and gender inequality have left women vulnerable. Women’s narratives show ongoing issues of vulnerability post-infection, further emphasising the significance of this group (Strathdee et al., 2013). They show competing social and economic concerns in daily life, which interact and have the potential to confound access to treatment. Providers recognise gender-specific challenges and the intersection of vulnerability for women, but structural constraints limit clinic-based interventions. Nonetheless, they wish to engage more broadly with patients and address social needs in clinical settings. From this, one can make a compelling argument for integrating ARV programmes with other forms of
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social and economic development, such as those that respond to gender-specific concerns including violence (McGrath, Kaawa-Mafigiri, Bridges, & Kakande, 2012; Russell et al., 2007). While difficult to achieve, integrated programmes address the broad concerns of those accessing treatment, allowing for long-term retention into care and resumption of ‘normal life’ while living with HIV. Acknowledgements
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I thank the study participants, staff at Joint Clinic Research Centre and Mbarara University of Science and Technology ISS Clinic for their assistance and research assistants Kisakye Sheila and Namanya Judith. I am grateful to Janet McGrath, Toby Reiner, Brian King and anonymous reviewers for comments on earlier versions of this paper.
Disclosure statement No potential conflict of interest was reported by the author.
Funding This study was funded by the National Science Foundation [grant number DDIG#0823287], with additional support from the Zdanis Fellowship at Case Western Reserve University.
References Bernays, S., Rhodes, T., & Terzic, K. J. (2010). “You should be grateful to have medicines”: Continued dependence, altering stigma and the HIV treatment experience in Serbia. AIDS Care, 22(Suppl 1), 14–20. doi:10.1080/09540120903499220 Biehl, J. (2007). Will to live: AIDS therapies and the politics of survival. Princeton, NJ: Princeton University Press. Chirawu, S. (2006). Till death do us part: Marriage, HIV/AIDS and the law in Zimbabwe. Cardozo Women's Law Journal, 13, 23–50. Dunkle, K., Jewkes, R., Brown, H., Gray, G., McIntyre, J., & Harlow, S. (2004). Gender-based violence, relationship power, and risk of HIV infection in women attending antenatal clinics in South Africa. The Lancet, 363, 1415–1421. doi:10.1016/S0140-6736(04)16098-4 Forsyth, A. D., & Valdiserri, R. O. (2012). Reaping the prevention benefits of highly active antiretroviral treatment: Policy implications of HIV Prevention Trials Network 052. Current Opinion in HIV and AIDS, 7(2), 111–116. doi:10.1097/COH.0b013e32834fcff6 García-Moreno, C. (2002). Dilemmas and opportunities for an appropriate health-service response to violence against women. The Lancet, 359, 1509–1514. doi:10.1016/S0140-6736(02)08417-9 Go, V. F., Sethulakshmi, C. J., Bentley, M., Sivaram, S., Srikrishnan, A., Solomon, S., & Celentano, D. (2003). When HIV-prevention messages and gender norms clash: The impact of domestic violence on women’s HIV risk in slums of Chennai, India. AIDS and Behavior, 7, 263–272. doi:10.1023/A:1025443719490 Gupta, G. R., Ogden, J., & Warner, A. (2011). Moving forward on women's gender-related HIV vulnerability: The good news, the bad news and what to do about it. Global Public Health, 6(Suppl 3), S370–S382. doi:10.1080/17441692.2011.617381 Gupta, G. R., & Weiss, E. (2009). Gender and HIV: Reflecting back, moving forward. In C. Pope, R. T. White, & T. Malow (Eds.), HIV/AIDS: Global frontiers in prevention/intervention (pp. 61– 72). New York, NY: Routledge. Hirsch, J. S. (2007). Gender, sexuality, and antiretroviral therapy: Using social science to enhance outcomes and inform secondary prevention strategies. AIDS, 21(Suppl 5), S21–S29. doi:10.1097/ 01.aids.0000298099.48990.99 Ibembe, P. (2009). The evolution of the ABC strategy for HIV prevention in Uganda: Domestic and international implications. In C. Pope, R. T. White, & T. Malow (Eds.), HIV/AIDS: Global frontiers in prevention/intervention (pp. 255–256). New York, NY: Routledge. Jewkes, R., Dunkle, K., Nduna, M., Levin, J., Jama, N., Khuzwayo, N., … Duvvury, N. (2006). Factors associated with HIV sero-status in young rural South African women: Connection
Downloaded by [Deakin University Library] at 16:06 05 November 2015
Global Public Health
893
between intimate partner violence and HIV. International Journal of Epidemiology, 35, 1461– 1468. doi:10.1093/ije/dyl218 Jewkes, R., & Morrell, R. (2010). Gender and sexuality: Emerging perspectives from the heterosexual epidemic in South Africa and implications for HIV risk and prevention. Journal of the International AIDS Society, 13, 6. doi:10.1186/1758-2652-13-6 Kalofonos, I. A. (2010). "All I eat is ARVs": The paradox of AIDS treatment interventions in central Mozambique. Medical Anthropology Quarterly, 24, 363–380. doi:10.1111/j.15481387.2010.01109.x Karamagi, C. A., Tumwine, J., Tylleskar, T., & Heggenhougen, K. (2006). Intimate partner violence against women in eastern Uganda: Implications for HIV prevention. BMC Public Health, 6, 284– 296. doi:10.1186/1471-2458-6-284 Kelly, R. J., Gray, R. H., Sewankambo, N., Serwadda, D., Wabwire-Mangen, F., Lutalo, T., & Wawer, M. (2003). Age differences in sexual partners and risk of HIV-1 infection in rural Uganda. Journal of Acquired Immune Deficiency Syndromes, 32, 446–451. doi:10.1097/ 00126334-200304010-00016 Kendall, C., & Hill, Z. (2010). Chronicity and AIDS in three South African communities. In L. Manderson & C. Smith-Morris (Eds.), Chronic conditions, fluid states: Chronicity and the anthropology of illness (pp. 175–194). New Brunswick, NJ: Rutgers University Press. Kim, J., Watts, C. H., Hargreaves, J. R., Ndhlovu, L. X., Phetla, G., Morison, L.A., … Pronyk, P. (2007). Understanding the impact of a microfinance-based intervention on women's empowerment and the reduction of intimate partner violence in South Africa. American Journal of Public Health, 97, 1794–1802. doi:10.2105/AJPH.2006.095521 Koenig, M. A., Lutalo, T., Zhao, F., Nalugoda, F., Kiwanuka, N., Wabwire-Mangen, F., … Gray, R. (2004). Coercive sex in rural Uganda: Prevalence and associated risk factors. Social Science & Medicine, 58, 787–798. doi:10.1016/S0277-9536(03)00244-2 Krishnan, S., Dunbar, M. S., Minnis, A. M., Medlin, C. A., Gerdts, C. E., & Padian, N. S. (2008). Poverty, gender inequities, and women’s risk of Human Immunodeficiency Virus/AIDS. Annals of the New York Academy of Sciences, 1136(1), 101–110. doi:10.1196/annals.1425.013 Krug, E. G., Mercy, J. A., Dahlberg, L. L., & Zwi, A. B. (2002). The world report on violence and health. The Lancet, 360, 1083–1088. doi:10.1016/S0140-6736(02)11133-0 Marsland, R. (2012). (Bio)Sociality and HIV in Tanzania: Finding a living to support a life. Medical Anthropology Quarterly, 26, 470–485. doi:10.1111/maq.12002 Mattes, D. (2011). “We are just supposed to be quiet”: The production of adherence to antiretroviral treatment in urban Tanzania. Medical Anthropology, 30, 158–182. doi:10.1080/01459740. 2011.552454 Mattes, D. (2012).'‘I am also a human being!’ Antiretroviral treatment in local moral worlds. Anthropology & Medicine, 19(1), 75–84. doi:10.1080/13648470.2012.660463 McGrath, J. W., Kaawa-Mafigiri, D., Bridges, S., & Kakande, N. (2012). ‘Slipping through the cracks’: Policy implications of delays in HIV treatment seeking. Global Public Health, 7, 1095– 1108. doi:10.1080/17441692.2012.701318 McGrath, J. W., Winchester, M. S., Kaawa-Mafigiri, D., Walakira, E., Namutiibwa, F., Birungi, J., Ssendegye, G., … Rwabukwali, C. B. (2014). Challenging the paradigm: Anthropological perspectives on HIV as a chronic disease. Medical Anthropology, 33, 303–317. doi:10.1080/ 01459740.2014.892483 Meinert, L., Mogensen, H., & Twebaze, J. (2009). Tests for life chances: CD4 miracles and obstacles in Uganda. Anthropology & Medicine, 16, 195–209. doi:10.1080/13648470902940697 Nguyen, V. (2007). Adherence as therapeutic citizenship: Impact of the history of access to antiretroviral drugs on adherence to treatment. AIDS, 21(Suppl 5), S31–S35. doi:10.1097/01. aids.0000298100.48990.58 Nguyen, V. (2010). The republic of therapy: Triage and sovereignty in West Africa’s time of AIDS. Durham, NC. Duke University Press. Nyanzi, S., Emodu-Walakira, M., & Serwaniko, W. (2009). The widow, the will and widowinheritance in Kampala: Revisiting victimization arguments. Canadian Journal of African Studies, 43(1), 12–33. doi:10.1080/00083968.2010.9707581 Parikh, S. (2009). Going public: Modern wives, men’s infidelity, and marriage in east central Uganda. In J. S. Hirsch, H. Wardlow, D. J. Smith, H. M. Phinney, S. Parikh, & C. A. Nathanson (Eds.), The secret: Love, marriage, and HIV (pp. 168–196). Nashville, TN: Vanderbilt University Press.
Downloaded by [Deakin University Library] at 16:06 05 November 2015
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M.S. Winchester
Rabkin, M., & El-Sadr, W. M. (2011). Why reinvent the wheel? Leveraging the lessons of HIV scale-up to confront non-communicable diseases. Global Public Health, 6, 247–256. doi:10.1080/17441692.2011.552068 Reniers, G., & Watkins, S. (2010). Polygyny and the spread of HIV in sub-Saharan Africa: A case of benign concurrency. AIDS, 24, 299–307. doi:10.1097/QAD.0b013e328333af03 Richey, L. A. (2012). Counseling citizens and producing patronage: AIDS treatment in South African and Ugandan clinics. Development and Change, 43, 823–845. doi:10.1111/j.14677660.2012.01782.x Russell, S., & Seeley, J. (2010). The transition to living with HIV as a chronic condition in rural Uganda: Working to create order and control when on antiretroviral therapy. Social Science & Medicine, 70, 375–382. doi:10.1016/j.socscimed.2009.10.039 Russell, S., Seeley, J., Ezati, E., Wamai, N., Were, W., & Bunnell, R. (2007). Coming back from the dead: Living with HIV as a chronic condition in rural Africa. Health Policy and Planning, 22, 344–347. doi:10.1093/heapol/czm023 Russell, S., Seeley, J., & Whiteside, A. (2010). Expanding antiretroviral therapy provision in resourceconstrained settings: Social processes and their policy challenges. AIDS Care, 22(Suppl 1), 1–5. doi:10.1080/09540121003786078 Rwabukwali, C. B. (2008). Gender, poverty, and AIDS risk: Case studies from rural Uganda. In D. Feldman (Ed.), AIDS, culture, and Africa (pp. 239–255). Gainesville: University Press of Florida. Ryan, G., & Bernard, H. R. (2003). Techniques to identify themes. Field Methods, 15(1), 85–109. doi:10.1177/1525822X02239569 Singer, M. (2009). Introduction to syndemics: A systems approach to public and community health. San Francisco, CA: Jossey-Bass. Strathdee, S., Wechsberg, W., Kerrigan, D., & Patterson, T. (2013). HIV prevention among women in low- and middle-income countries: Intervening upon contexts of heightened HIV risk. Annual Review of Public Health, 34, 301–316. doi:10.1146/annurev-publhealth-031912-114411 Thornton, R. (2008). Unimagined community: Sex, networks, and AIDS in Uganda and South Africa. Berkeley: University of California Press. Uganda AIDS Commission. (2012). Uganda global AIDS response progress report 2012. Kampala: Author. Uganda Bureau of Statistics & ICF International Inc. (2012). Uganda demographic and health survey 2011. Kampala: Uganda Bureau of Statistics and Calverton; MD: ICF International Inc. UNAIDS. (2013a). Global report: UNAIDS report on the global AIDS epidemic 2013. Geneva: Author. UNAIDS. (2013b) Global update on HIV treatment 2013: Results, impacts, and opportunities. Geneva: Author. UNITAID. (2010). UNITAID annual report 2010. Geneva: WHO. Vitoria, M., Vella, S., & Ford, N. (2013). Scaling up antiretroviral therapy in resource-limited settings: Adapting guidance to meet the challenges. Current Opinion in HIV and AIDS, 8(1), 12–18. doi:10.1097/COH.0b013e32835b8123 Wawer, M. J., Gray, R., Serwadda, D., Namukwaya, F., Makumbi, F., Serwankambo, N., … Quinn, T. (2005). Declines in HIV prevalence in Uganda: Not as simple as ABC. Paper presented at 12th conference on retroviruses and opportunistic infections, Boston, MA [Abstract #27LB]. WHO, UNICEF, & UNAIDS. (2011). 2011 progress report: Global HIV/AIDS response. Epidemic update and health sector progress towards universal access. Geneva: WHO. Whyte, S., Whyte, M., Meinert, L., & Kyaddondo, B. (2004). Treating AIDS: Dilemmas of unequal access in Uganda. SAHARA-J: Journal of Social Aspects of AIDS, 1(1), 14–26. doi:10.1080/ 17290376.2004.9724823 Winchester, M. (2011). Living with globalization: The intersection of intimate partner violence and HIV infection in Uganda (Unpublished doctoral dissertation). Department of Anthropology, Case Western Reserve University, Cleveland, OH. World Health Organization (WHO). (2002). World report on violence and health. Geneva: Author. Retrieved from http://whqlibdoc.who.int/publications/2002/9241545615_eng.pdf
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Synergistic vulnerabilities: Antiretroviral treatment among women in Uganda Margaret S. Winchester To cite this article: Margaret S. Winchester (2015) Synergistic vulnerabilities: Antiretroviral treatment among women in Uganda, Global Public Health, 10:7, 881-894, DOI: 10.1080/17441692.2015.1007468 To link to this article: http://dx.doi.org/10.1080/17441692.2015.1007468
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Date: 05 November 2015, At: 16:06
Global Public Health, 2015 Vol. 10, No. 7, 881–894, http://dx.doi.org/10.1080/17441692.2015.1007468
Synergistic vulnerabilities: Antiretroviral treatment among women in Uganda Margaret S. Winchester* Department of Geography, The Pennsylvania State University, University Park, PA, USA
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(Received 5 December 2013; accepted 14 November 2014) Despite being an early success story in the reduction of HIV infection rates, Uganda faces myriad challenges in the recent era of accelerated antiretroviral treatment (ARV) scale-up. For those able to access treatment, ongoing vulnerabilities of poverty and violence compound treatment-related costs and concerns. This paper explores experiences of one particularly vulnerable population – women on ARVs who have also experienced intimate partner violence (IPV). Data were collected over 12 months in Uganda. They include ethnographic interviews (n = 40) drawn from a larger sample of women on ARV and semi-structured interviews with policy-makers and service providers (n = 42), examining the intersection of experiences and responses to treatment from multiple perspectives. Women’s narratives show that due to treatment, immediate health concerns take on secondary importance, while other forms of vulnerability, including IPV and poverty, can continue to shape treatment experiences and the decision to stay in violent relationships. Providers likewise face difficulties in overburdened clinics, though they recognise women’s concerns and the importance of considering other forms of vulnerability in treatment. This analysis makes the case for integrating treatment with other types of social services and demonstrates the importance of understanding the ways in which synergistic and compounding vulnerabilities confound treatment scale-up efforts. Keywords: medical anthropology; Uganda; HIV treatment; intimate partner violence
Introduction Over the past three decades, the reality of living with HIV/AIDS has shifted dramatically, though asymmetrically and disproportionately across the globe (Biehl, 2007). Most recently, with the advent of highly active antiretroviral treatment (ARVs), HIV infection has been likened to living with a chronic disease (Kendall & Hill, 2010; McGrath et al., 2014; Russell, Seeley, & Whiteside, 2010; Vitoria, Vella, & Ford, 2013). What was previously a death sentence has become manageable. With high levels of medication adherence and proper nutrition, viral suppression can lead to the resumption of a so-called ‘normal life’ and decrease the chances of further transmission (Forsyth & Valdiserri, 2012). Nonetheless, with treatment reaching only 34% of those eligible, treatment rollout continues to lag behind global targets under the most recent World Health Organisation (WHO) guidelines (UNAIDS, 2013a; Vitoria et al., 2013). WHO guidelines recommend early treatment initiation and act as the minimum standard for implementation, but are interpreted and carried out differently across the globe. Coverage for women eligible for *Email: [email protected] © 2015 Taylor & Francis
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treatment is significantly higher worldwide than for men (73% compared to 57%) (UNAIDS, 2013a). As discussed below, Uganda has made great strides in treatment rollout, though it is still subject to funding contingencies, structural issues within clinics and the economic and social demands of treatment faced by individuals. While women access ARVs in greater numbers than men, persistent gendered challenges of poverty, economic dependence and also violent or conflictual intimate relationships highlight the complexity of long-term treatment. Social and economic vulnerability interact synergistically to shape women’s experiences of illness and treatment. Women’s vulnerabilities while on treatment are often understood by individual providers, but currently not formally addressed in medical settings. This paper examines women’s narratives of treatment experience, as well as perspectives from their medical providers. These narratives and perspectives illustrate how issues of violence, poverty and treatment interact as forms of ‘synergistic vulnerability’ to create a complex social context of illness management. Additionally, due to high rates of intimate partner violence (IPV) and the fact that women are accessing treatment, a case is made for integration of services to improve experiences of care and the likelihood of sustained treatment. Background and framework Vulnerability and HIV While contested across disciplines, the concept of vulnerability generally refers to a susceptibility to harm from exposures and stresses, which can manifest itself in social, cultural, legal and economic ways (Strathdee, Wechsberg, Kerrigan, & Patterson, 2013). Discussions of vulnerability and HIV often centre on risk of infection and targeted prevention measures. HIV infection itself can make individuals more vulnerable to other adverse health outcomes, as well as negative social and psychosocial impacts (Jewkes & Morrell, 2010). Gender inequality can act as one form of vulnerability, decreasing women’s ability to make decisions about their own healthcare and to have control over sexual encounters and relationships (Gupta, Ogden, & Warner, 2011). As Gupta et al. (2011) suggest, gendered vulnerability to HIV is entrenched in a nexus of structural constraints, economic dependency and harmful gender norms. Globally, women remain particularly vulnerable to social and economic hardships emerging from and related to HIV infection. Their marginality has been documented across settings and persists despite higher numbers of women than men accessing ARVs (e.g. Go et al., 2003; Gupta & Weiss, 2009; Hirsch, 2007; Kelly et al., 2003; Nyanzi, Emodu-Walakira, & Serwaniko, 2009; Rwabukwali, 2008; UNAIDS, 2013a). Postinfection, women are burdened heavily due to their roles as caregivers and their limited economic power in places like Uganda. Gender-based violence, including IPV, can intersect with HIV in many ways, including through greater risk of infection, fears of disclosure and long-term difficulty accessing resources to initiate and remain on treatment (Dunkle et al., 2004; Jewkes et al., 2006; Karamagi, Tumwine, Tylleskar, & Heggenhougen, 2006; Koenig et al., 2004; Krishnan et al., 2008; Krug, Mercy, Dahlberg, & Zwi, 2002). As with the women in this study, violence can both precede and follow HIV infection, diagnosis and treatment. Gender-based violence, in its many forms, can contribute to stressful environments and interact with other predictors of poor health outcomes, including depression, alcohol use/abuse, lower decision-making power, lowered overall immunity and decreased social support (Kim et al., 2007; Dunkle et al., 2004; Jewkes et al., 2006; Koenig et al., 2004).
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Different types of vulnerability interact, creating greater potential for poor outcomes and greater stress. I refer to this interaction as ‘synergistic vulnerability.’ Similar to the biological interactions in syndemics, the social dimensions of HIV are co-constructed and mutually reinforced (Singer, 2009). In this study’s population, HIV infection, IPV, poverty, gender imbalances and policies interact and influence the overall experience of ARV seeking. Women’s stories highlight the economic dimensions of social vulnerability and the significance of both in their access and experiences of ARV. Control over economic assets has been shown to be a significant factor in HIV-related resiliency in other settings (Gupta et al., 2011; Kim et al., 2007). These interactions and experiences are uniquely shaped by and grounded in the social, political and economic context of Uganda, though they also have commonalities with other low-income settings. Clinical and structural considerations ARV programmes are frequently the first large-scale chronic disease programmes in developing countries (Rabkin & El-Sadr, 2011). Global funding decisions and local politics shape the abilities of clinics to respond to treatment demands. Challenges to rollout, then, often play out in clinic settings, highlighting structural, technological, personnel and supply issues, making the impacts of treatment programmes heterogeneous and ‘deeply contextual’ (Rabkin & El-Sadr, 2011). Within clinic settings, the requirements for antiretroviral rollout are demanding and comprehensive, including medical record systems, counselling, support, outreach and integration of services (Rabkin & El-Sadr, 2011). These place demands on medical professionals as well as patients. Counsellors act as the ‘point of negotiation’ between global standards and implementation with persons living with HIV and are frequently charged with imparting the discourse of strict adherence to treatment to their patients. With regard to patients, Richey (2012) writes: if patients are to become clients of an ARV programme, or therapeutic citizens, then they must embrace an ideology of individual responsibility that rests upon the view of an individual that can be disentangled from the social, political and cultural processes around them. (p. 841)
Despite attaining high levels of adherence, patients are often unable to ‘disentangle’ themselves from the social dimensions of the disease. The clinic necessarily remains a space of limited scope, as individuals continue to contend with other challenges and vulnerabilities apart from or generated by treatment (Bernays, Rhodes, & Terzic, 2010; Kalofonos, 2010; Mattes, 2011, 2012; Russell et al., 2007). Despite the higher numbers of women accessing ARVs, the interaction of economic and social vulnerability makes them an important target for the potential integration of services. In other settings, health services have been shown to be effective settings for the prevention of IPV (García-Moreno, 2002). In cases where illness can exacerbate ongoing violence, this is particularly salient. However, as will be seen in data from the Ugandan context, providers, while often aware of their patients’ difficulties, are limited in their capacities to respond. Ugandan context Early in the HIV epidemic, Uganda was one of the hardest-hit countries. Through a combination of governmental public awareness campaigns and education, international
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support and epidemiological factors, the country was, by the early 2000s, the first to reduce the rate of HIV infection. Nonetheless, the reasons for this reduction remain controversial and have not led to a sustained reduction in HIV infection rates. In the past decade, the previously plateaued incidence has risen (Uganda AIDS Commission, 2012; Wawer et al., 2005). There are several alternative explanations for Uganda’s initially declining infection rate, other than the national prevention strategies. These include high mortality rates (Wawer et al., 2005), high fertility rates (Ibembe, 2009), traditional marital practices (Parikh, 2009) and the configuration of sexual networks (Thornton, 2008). All these theories configure risk differently for men and women, based on mobility and relationship patterns. In particular, polygyny and multiple concurrent partners can potentially increase women’s vulnerability through exposure to HIV, potential intimate relationship conflicts and decreased power to access resources, though this varies widely by relationship (Chirawu, 2006; Reniers & Watkins, 2010). At the time of data collection for the present study, 62.5% of the women reported ever having been in a polygynous union. Concerted international involvement in combating HIV in Uganda began in the late 1980s and early 1990s and focused on building diagnostic and testing facilities and prevention through education. The Ministry of Health is largely dependent on donor funding and its key targets continue to be driven by donors’ priorities; more than 75% of the national AIDS response is funded by outside sources (Ibembe, 2009; Meinert, Mogensen, & Twebaze, 2009; UNAIDS, 2013a; Whyte, Whyte, Meinert, & Kyaddondo, 2004). In developing its President’s Emergency Plan for AIDS Relief (PEPFAR) strategy, US policy-makers have highlighted Uganda’s prevention model, subsequently emphasising abstinence programmes as a core element in programmes receiving PEPFAR funding (Sussman, 2006, cited in Ibembe, 2009). The narrow funding focus on HIV has been criticised as neglectful of other diseases and the need for comprehensive infrastructure building in a country with high rates of poverty and death from other infectious diseases (Ibembe, 2009). Because of early prevention efforts and ongoing campaigns to raise awareness, HIV is now entrenched in daily discourses in Uganda. Billboards plaster urban areas and trading centres in rural areas encouraging faithfulness, promoting testing and treatment and targeting specific groups, such as those engaged in cross-generational sex. The Demographic and Health Survey in Uganda (Uganda Bureau of Statistics & ICF International Inc., 2012) has shown knowledge of HIV transmission and prevention is widespread. For prevention, 89% of women and over 90% of men over age 25 report that they know that limiting sex to one uninfected partner with no other partners can reduce their chance of contracting HIV. Knowledge of condoms as prevention is not as high, but still widespread among both men (more than 80%) and women (more than 70%). Due to shifting recommendations for earlier treatment initiation, estimates for antiretroviral coverage in Uganda range from 52% to 81% of those in need (UNAIDS, 2013a, 2013b; UNITAID, 2010; WHO, UNICEF & UNAIDS, 2011). As is the case globally, women access treatment in greater numbers than men. Recent evidence shows that among men and women in Uganda, the number of sexual partners is increasing and condom use is decreasing (UNAIDS, 2013a). Women’s rights in Uganda have been adopted slowly and inconsistently throughout the country; many women still face challenges in inheriting property and initiating divorce. Domestic violence only became a civil offence during the course of fieldwork in 2009 through the passage of the Domestic Violence Bill (previously it was illegal only if severe enough to constitute criminal assault), but had yet to be adopted into the police enforcement guidelines.
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Methods Data collection These data are drawn from fieldwork on the intersection of IPV and HIV treatment in Uganda, conducted over 12 months in 2008 and 2009. The study aimed to place vulnerable women’s experiences within local, national and global contexts of HIV infection. Data were collected in three phases and included screening surveys (n = 200) and nested ethnographic interviews (n = 40) with women on ARVs, and semi-structured interviews with policy-makers and service providers (n = 42), examining the intersection of experiences and responses to HIV treatment from multiple perspectives (Winchester, 2011). Data presented here are drawn from ethnographic interviews and those with service providers. The study was conducted in two regions of the country: the capital Kampala in the central region and Mbarara town in the southwest of the country – two large population centres in a country that remains mostly rural. While most of the clinic patients in Mbarara come from more rural surrounding areas, they may also not reflect the issues of treatment access in the country as a whole. Both these areas have high reported prevalence of HIV and IPV and were selected for this reason (Uganda Bureau of Statistics & ICF International Inc., 2012; Uganda AIDS Commission, 2012). A survey was adapted from the WHO instrument on women’s health and violence (WHO, 2002), applied among women receiving free ARVs at two clinical facilities, and used as a screening tool for further interviews. This instrument uses a checklist of partner behaviours to identify different forms of violence. Women were approached for the survey randomly at the clinics at stratified times throughout the day until 100 surveys were completed in each of the two clinics. Women were eligible if they were over age 18 and enrolled in treatment. Forty women (20 in each site) with histories of physical and sexual violence from intimate partners as identified through the surveys (38% of the sample) were purposively selected for follow-up ethnographic interviews, conducted in their homes or in a safe place of their choosing. These follow-up interviews focused on narratives of relationships and endurance, help-seeking behaviours for illness and violence and strategies for long-term maintenance of ARV. The two clinics involved in this study are among the largest distributors of ARVs in the country. Like many other clinics in the country, both are funded by a combination of government and multinational and bilateral donors. The clinic in Kampala was, at one time, the largest distributor of ARVs in sub-Saharan Africa. Centrally located, it still caters to thousands of patients in the capital region and holds a strong reputation for HIV-specific care and regular availability of ARVs, despite the sometimes shortened duration of time between drug refill visits. It is a busy space, but the large grounds are green and quiet. Following the period of data collection, the main clinic for this facility moved to the outskirts of Kampala and patients generally must travel much further than before. The clinic in Mbarara opened more recently, as one part of the regional referral hospital. It is located in central Mbarara; the large open waiting area fills early in the morning and there are long queues on clinic days. Both clinics are open five days per week and offer comprehensive services for men, women and children with HIV. ARVs are free, as are tests to determine CD4 counts. Prophylactic Septrin (cotrimoxazole), viral load tests, other laboratory tests and treatment for opportunistic infections are generally only available for a fee. Other stakeholders (n = 42) were selected purposively to represent a range of perspectives in terms of both position and location and include policy-makers, social service providers and clinical providers. Social service providers were selected from
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organisations providing support to vulnerable women in Kampala and Mbarara and included domestic violence awareness programme members, counsellors and women’s rights advocates. Clinical providers were drawn from the two clinics where women were recruited from the study and included nurses, counsellors, physicians and pharmacists. All interviews were conducted by the investigator and a trained research assistant. They were conducted in English, Luganda or Runyankole.
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Analysis For surveys and sample demographics, univariate and bivariate analyses were conducted using SPSS. Semi-structured and ethnographic interviews with women and providers were recorded and transcribed. Following an in-depth reading of the interviews, a thematic approach was utilised with both a priori themes and those emergent from the narratives (Ryan & Bernard, 2003). The a priori general themes for coding included relationships and marriage, gender role beliefs and practices, HIV testing, treatment experiences, work, seeking help for illness and violence and endurance or resilience processes. More detailed codes within each category were developed based on the narratives. Codes explored in-depth in this paper are those involving issues of treatment access, adherence, marital conflict and providers’ perspectives on challenges and barriers to treatment. Ethical considerations All participants gave written or verbal informed consent and were informed that their treatment would not be affected if they chose not to participate. Ethical approval was granted by Case Western Reserve University, The Joint Clinical Research Centre, Mbarara University of Science and Technology and the Uganda National Council for Science and Technology. All women participating were given information about services available in their community regardless of whether they disclosed a history of violence.
Findings Study sample Demographic characteristics of the 40 women selected for ethnographic interviews, based on their experience with IPV, are presented in Table 1. In an initial clinic-based survey of 200 women in Kampala and Mbarara, 38% of women reported ever having experienced physical or sexual violence from an intimate partner. For some, the violence preceded HIV infection, for others it began after diagnosis and for others violence was ongoing or episodic. A subsample of 40 women were selected to maximise heterogeneity in age and range of experiences. For each of these women, IPV and HIV management co-occurred at some point in time. The women in this sample have been on ARVs for an average of three years and range in age from 21 to 55. They have differing levels of education and marital status. More than 60% have ever been married. Many of those who are not married have longterm partnerships outside of formal marriage arrangements. More than half have had or currently have partners who they know to be HIV positive. These women reflect demographic characteristic of the overall Ugandan population, though their access to treatment makes them part of the fortunate minority of men and women living with HIV in the country.
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Table 1. Characteristics of nested sample of women on ARVs (N = 40). Age (years) Mean Range Highest level of education (%) No formal education Primary education Secondary education Tertiary/university education Marital status (%) Married Not currently married Widowed Ever been in a polygynous union (%) Ever been with a known HIV-positive partner (%) Time on ARVs (years) Mean Range
36.8 21–55 15 55 27.5 2.5 27.5 37.5 35 62.5 62.5 3.14 0.08–10
Experiences of treatment When asked specifically about their experiences on treatment, women’s responses were overwhelmingly positive and emphasised dramatic improvements in their health and productivity. When probed further, a few shared information about some of the early side effects and others spoke of some difficulties with their partners in staying on treatment. The greatest concern, by far, is not the direct effect of the treatment, but the context of relying on a constant supply of money to be able to access the medicine or to maintain a healthy diet. Many said worrying too much about having HIV was not good for their health, so they tried to focus on positive living. In the context of multiple and competing vulnerabilities – poverty, violence, sickness – treatment availability allows for the management of health concerns and integration of self-care into day-to-day life. Several times during the course of an interview, women would stop what they were saying mid-sentence, pull bottles of large pills and a water bottle out of their purses or go to their kitchens and take their medication at the precise designated time before finishing what they had been saying. Taking treatment is embedded in the normalcy of daily activities. Furthermore, most of the women are very invested in their own healthcare and status, knowing detailed information about dosing, types of medications and their CD4 count – sometimes despite being unable to read and write (see also Meinert et al., 2009). The local translation of CD4 cells is ‘soldiers’. Women told me their exact number of ‘soldiers’ at the beginning of the illness, compared to now, to illustrate the drastic changes. Many have undetectable viral loads and plan to keep it that way. A 36-year-old woman in Mbarara, while talking about her children, paused to take her medicine and resumed to tell me: I have not had any problems with medication. Actually to start medication, I had only 6 soldiers, but now I have 664 soldiers. I have never been sick since I started the medicine. Once in a while there is some fear. This is often due to seeing so many other people that have
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it pass away due to HIV. But even though there is some fear, there is a little comfort in knowing that the medications make us healthy and the fact that when we started taking them we knew we were taking them for life. So whether scared or not you just have to take it. (Age 36, Mbarara)
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Her ‘soldiers’ have increased dramatically and she has faith in the efficacy of treatment, but she still has some lingering fear from living with an incurable disease. She and the other women are not naively unconcerned about their HIV status, but rather have incorporated it into a daily routine and the initial sense of fear is no longer the most important thing in their lives. Most follow their doctors’ orders carefully and make great sacrifices to secure transport money to arrive at the clinic on their designated appointment dates.
Vulnerability context Taking medication is not the entire picture though. Women also need transport money to get to the clinic, proper nutrition to guarantee effectiveness of treatment and care for other members of their households and families. These issues emerged at the forefront of daily concerns and contribute to synergistic vulnerabilities. IPV affects economic dependency, which in turn affects treatment concerns and risks of poor adherence. Women frequently feel ‘tied’ to violent partners to cover the additional ‘costs’ associated with treatment. Poverty and money consistently remain concerns in deciding whether to stay in a relationship, in adhering to medication and in caring for children. One side effect of medication is an increased appetite, and at the clinics women are also instructed on proper nutrition to minimise negative complications from the sometimes difficult drug regimens. This increased appetite and need for food are great sources of stress, though stress is also something to be avoided, as advised by the counsellors. As one woman describes her outlook: When you over-worry, sickness seems to persist. You don’t work, yet you have to eat. The doctors tell you – you have to eat. Me, if I have I got money or a source of income that would be the least of my worries but now the whole problem is money. And I don’t spend my time thinking about the disease – I spend my time thinking about money. (Age 47, Kampala)
When talking about medication, most of the women had very little to say. They try not to worry, and focus on health instead of sickness. Another, echoing the worries of things that go along with treatment rather than treatment itself, describes her experience: For me to be on medicine, it has been ok. Other than issues like poverty, medicine is really not an issue. (Age 37, Mbarara)
Now that she is healthy, she worries about providing for her family more than medical side effects. The two primary reasons for physical violence in their relationships cited by women in the study are infidelity and alcohol, and often a combination of the two. Most attribute their HIV infection to their partner’s infidelity and their discovery of this leads to more conflict. Women reported men trying to block them from testing or refusing to test with them. After engagement in care, however, few of the women reported their partners being able to directly block or prevent access to antiretroviral medication. Instead, economic dependency leads to challenges of getting money for transport to the clinic or other associated costs of illness.
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Only two women reported interference or problems with their husband in regards to treatment. Neither woman had sought help for other issues in the marriage but did so once their health was involved. One said her husband was throwing away her medication, saying that since they were both positive, they should die together (he tested, but had refused treatment). The other said the husband took her medication, presumably for himself because he would not go to the clinic. Both reported the matter to the local government counsellor (LC) in their area, one in Kampala, another outside of Mbarara, and the LCs’ response of mediation was enough to resolve the issue. Though most are untrained, mediations with LCs typically involve meetings with each partner independently and then together. In Kampala, the LC told both partners of the benefit of taking medication for a happy and harmonious marriage. In Mbarara, the woman could not recall what the counsellor suggested, but recalled that his influence was enough to stop her partner’s behaviour. Neither of the women’s partners began taking medication, but both ceased to interfere with their wives’ treatment. One woman says of the situation now that she has gotten help: For me, I normally take [the medicine]. When I am supposed to come here [to the clinic for medication], I have to come. Whether it is what or what, I come. He doesn’t even stop me. He doesn’t interfere. (Age 38, Kampala)
Even in the face of ongoing physical, sexual or verbal violence, women reported staying with a partner who provides financially due to the costs associated with treatment. A 44year-old woman in Kampala was shocked when I asked her if she ever thought of leaving her marriage during the times when her husband was drinking heavily and beating her regularly. She responded strongly, There’s no way I can tell him to go because sometimes he gives me help. He gives me money for school fees for the children, so if I go or tell him to go, who will help me? Even for the house, he gives me money to pay the rent. So why should I tell him to go away? (Age 44, Kampala)
From women’s narratives, it is apparent that multiple forms of vulnerability interact and shape daily concerns on a shifting basis. Nonmedical concerns in medical settings The issues presented by medical providers were similar in both sites; in both Kampala and Mbarara, they spoke of the difficulties of a heavy workload and expressed similar concerns for their patients’ economic constraints. Staff at both clinics are stretched thin by large patient loads and limited resources. Though they may recognise that the clinic is a good setting to address social issues, including violence, other concerns remain central. All the providers interviewed spoke of women as having separate challenges from men for accessing and maintaining ARV. According to medical providers, the main challenges that women face are due to dependency on their partners and so are part of a larger context of poverty, dependence and gender organisation. Clinicians feel helpless to respond to these structural injustices and vulnerabilities and instead typically only discuss clinical concerns. Providers are sympathetic towards their patients’ issues, recognising that HIV treatment and illness management exacerbates women’s dependency on men for money – for transport or proper nutrition to mitigate side effects. On countless occasions, I witnessed clinic staff members reaching into their own pockets to assist needy clients,
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despite the official admonishment of this behaviour by both clinics. As one physician described,
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We had instances, within a period of two or three months, I may give transport to about four patients, my own money … so they sell a goat or they borrow money, and after you see them, they tell you they don’t even have money to go back. So if you have some money, you give it to them. And I’m sure all the clinicians here, we’ve done that a number of times. (Physician, male, Mbarara)
Economic concerns were by and large recognised as the most significant factor inhibiting women’s success on ARVs. Economic difficulties typically first impact adherence through a lack of money for transport, and, as seen above, clinicians often go beyond their prescribed duties to assist those who are the worst off. The other ramification of poverty for those on ARVs is insufficient nutrition. Side effects of treatment are exacerbated without proper nutrition. Most providers also recognise that poverty is gendered and most difficult for their female clients. Medical provider workload Systematic constraints within the medical system limit providers’ interactions with needy women and the resources they have to respond to issues outside of an immediate medical purview. The sheer volume of patients in each clinic is well beyond the ideal capacity of caregivers. One nurse in Kampala, in her late 50s, comments that nurses have always been busy, but in recent years it has become unmanageable. She views nurses to be ‘natural counsellors’ and enjoys visits where she can check up on the client’s personal life. She and every other clinician interviewed lamented their inability to engage beyond the medical, describing extreme situations where up to 250 patients are seen by one clinician in a single day, or a more typical load that can still include up to 70 or 80 patients (the described ideal is 20–30 per day for a comprehensive visit). One physician described his typical clinical encounter as rushed but in large part possible because of the success of ARVs in restoring health. He and other providers move quickly through clinic visits because patients are healthy and they are lined up outside waiting. Another nurse summed up her feelings of her hands being tied – the lack of staffing limits a clinical encounter to the bare necessities, not what she ideally wants to do. She says: If they are too many sometimes, you just do what you’re supposed to do, not what you want to do, like maybe talk to a client for another 10 minutes. You cannot do this because the line outside is so long and people have to go away to work. (Nurse, female, Kampala)
Patients are lined up, and she cannot discuss more in-depth issues, such as relationships or violence. Providers recognise poverty and compounding issues as significant in the scaleup of treatment, but are constrained by the structure of crowded clinics and rapidly expanding services. Their narratives imply an understood imperative to address social and economic concerns within the clinical encounter, if it were possible to do so – potentially through additional counselling or provision of some basic resources.
Discussion All the women in this study have faced a dual vulnerability of living with HIV and facing violence in their relationships. At some point, each of these women has faced additional
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compounding vulnerabilities and issues, including those directly related to treatment and poverty. Their narratives reveal treatment experiences that are largely successful, though still fraught with worry over potentially not being able to meet the treatment demands. These women are representative of the new era of HIV, in which the distribution of ARVs makes it possible for HIV to become a secondary concern. The dramatic results of treatment show the ‘Lazarus effect’ (Rabkin & El-Sadr, 2011) of rapidly regaining health and seemingly coming back from the dead. The women are engaged with their HIV care, particularly in regards to knowledge of treatment (Meinert et al., 2009). Nonetheless, other vulnerabilities and struggles remain. With the exception of two, the women’s partners have not interfered directly with treatment access, but create challenges for the women and impose economically dependent relationships. In fact, many choose to remain with violent partners for the sake of managing their health. These findings echo those of other recent studies in sub-Saharan Africa and elsewhere, where hunger, poverty and gender concerns persist despite national and international progress in making ARVs available and accessible (Bernays, Rhodes, & Terzic, 2010; Kalofonos, 2010; Mattes, 2012; Russell et al., 2007; Russell & Seeley, 2010). Service provision for HIV in Uganda has grown rapidly in recent years and thousands of men and women have access to life-saving drugs that were inaccessible until only a few years ago. The structure of global funding allows for local uptake and the rapid distribution of ARVs. The clinics are filled to capacity and clinicians stretched to their limit. Targeted funding perpetuates the narrow scope of HIV treatment programmes. Notably, the social dimensions of HIV, including gendered vulnerabilities and exacerbated economic dependency, are recognised by clinicians. However, due to the immediacy of clinical aspects of disease, non-clinical concerns do not find outlet in clinical settings, and providers struggle to attend to their patients with limited resources. These structural limitations to ARV rollout are hardly unique to Uganda and often play a large role in the distribution and experience of treatment across sub-Saharan Africa (Marsland, 2012; Mattes, 2012; Nguyen, 2007, 2010). As has been argued elsewhere, one key to improving treatment outcomes and reducing overall vulnerability in women living with HIV is to address issues of violence and economic disparity (Gupta et al., 2011; Krishnan et al., 2008). True integration of services is rare and difficult to achieve, largely due to structural and funding constraints of vertically funded programmes. Nonetheless, the clinic remains a point of contact for many women living with HIV and would be an ideal location for facilitating and integrating services to address violence response and prevention as well as sources of economic empowerment. Conclusion These data speak to the complicated nature of HIV rollout within the Ugandan context. The history of HIV in the country has made treatment availability a reality, but ongoing IPV and gender inequality have left women vulnerable. Women’s narratives show ongoing issues of vulnerability post-infection, further emphasising the significance of this group (Strathdee et al., 2013). They show competing social and economic concerns in daily life, which interact and have the potential to confound access to treatment. Providers recognise gender-specific challenges and the intersection of vulnerability for women, but structural constraints limit clinic-based interventions. Nonetheless, they wish to engage more broadly with patients and address social needs in clinical settings. From this, one can make a compelling argument for integrating ARV programmes with other forms of
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social and economic development, such as those that respond to gender-specific concerns including violence (McGrath, Kaawa-Mafigiri, Bridges, & Kakande, 2012; Russell et al., 2007). While difficult to achieve, integrated programmes address the broad concerns of those accessing treatment, allowing for long-term retention into care and resumption of ‘normal life’ while living with HIV. Acknowledgements
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I thank the study participants, staff at Joint Clinic Research Centre and Mbarara University of Science and Technology ISS Clinic for their assistance and research assistants Kisakye Sheila and Namanya Judith. I am grateful to Janet McGrath, Toby Reiner, Brian King and anonymous reviewers for comments on earlier versions of this paper.
Disclosure statement No potential conflict of interest was reported by the author.
Funding This study was funded by the National Science Foundation [grant number DDIG#0823287], with additional support from the Zdanis Fellowship at Case Western Reserve University.
References Bernays, S., Rhodes, T., & Terzic, K. J. (2010). “You should be grateful to have medicines”: Continued dependence, altering stigma and the HIV treatment experience in Serbia. AIDS Care, 22(Suppl 1), 14–20. doi:10.1080/09540120903499220 Biehl, J. (2007). Will to live: AIDS therapies and the politics of survival. Princeton, NJ: Princeton University Press. Chirawu, S. (2006). Till death do us part: Marriage, HIV/AIDS and the law in Zimbabwe. Cardozo Women's Law Journal, 13, 23–50. Dunkle, K., Jewkes, R., Brown, H., Gray, G., McIntyre, J., & Harlow, S. (2004). Gender-based violence, relationship power, and risk of HIV infection in women attending antenatal clinics in South Africa. The Lancet, 363, 1415–1421. doi:10.1016/S0140-6736(04)16098-4 Forsyth, A. D., & Valdiserri, R. O. (2012). Reaping the prevention benefits of highly active antiretroviral treatment: Policy implications of HIV Prevention Trials Network 052. Current Opinion in HIV and AIDS, 7(2), 111–116. doi:10.1097/COH.0b013e32834fcff6 García-Moreno, C. (2002). Dilemmas and opportunities for an appropriate health-service response to violence against women. The Lancet, 359, 1509–1514. doi:10.1016/S0140-6736(02)08417-9 Go, V. F., Sethulakshmi, C. J., Bentley, M., Sivaram, S., Srikrishnan, A., Solomon, S., & Celentano, D. (2003). When HIV-prevention messages and gender norms clash: The impact of domestic violence on women’s HIV risk in slums of Chennai, India. AIDS and Behavior, 7, 263–272. doi:10.1023/A:1025443719490 Gupta, G. R., Ogden, J., & Warner, A. (2011). Moving forward on women's gender-related HIV vulnerability: The good news, the bad news and what to do about it. Global Public Health, 6(Suppl 3), S370–S382. doi:10.1080/17441692.2011.617381 Gupta, G. R., & Weiss, E. (2009). Gender and HIV: Reflecting back, moving forward. In C. Pope, R. T. White, & T. Malow (Eds.), HIV/AIDS: Global frontiers in prevention/intervention (pp. 61– 72). New York, NY: Routledge. Hirsch, J. S. (2007). Gender, sexuality, and antiretroviral therapy: Using social science to enhance outcomes and inform secondary prevention strategies. AIDS, 21(Suppl 5), S21–S29. doi:10.1097/ 01.aids.0000298099.48990.99 Ibembe, P. (2009). The evolution of the ABC strategy for HIV prevention in Uganda: Domestic and international implications. In C. Pope, R. T. White, & T. Malow (Eds.), HIV/AIDS: Global frontiers in prevention/intervention (pp. 255–256). New York, NY: Routledge. Jewkes, R., Dunkle, K., Nduna, M., Levin, J., Jama, N., Khuzwayo, N., … Duvvury, N. (2006). Factors associated with HIV sero-status in young rural South African women: Connection
Downloaded by [Deakin University Library] at 16:06 05 November 2015
Global Public Health
893
between intimate partner violence and HIV. International Journal of Epidemiology, 35, 1461– 1468. doi:10.1093/ije/dyl218 Jewkes, R., & Morrell, R. (2010). Gender and sexuality: Emerging perspectives from the heterosexual epidemic in South Africa and implications for HIV risk and prevention. Journal of the International AIDS Society, 13, 6. doi:10.1186/1758-2652-13-6 Kalofonos, I. A. (2010). "All I eat is ARVs": The paradox of AIDS treatment interventions in central Mozambique. Medical Anthropology Quarterly, 24, 363–380. doi:10.1111/j.15481387.2010.01109.x Karamagi, C. A., Tumwine, J., Tylleskar, T., & Heggenhougen, K. (2006). Intimate partner violence against women in eastern Uganda: Implications for HIV prevention. BMC Public Health, 6, 284– 296. doi:10.1186/1471-2458-6-284 Kelly, R. J., Gray, R. H., Sewankambo, N., Serwadda, D., Wabwire-Mangen, F., Lutalo, T., & Wawer, M. (2003). Age differences in sexual partners and risk of HIV-1 infection in rural Uganda. Journal of Acquired Immune Deficiency Syndromes, 32, 446–451. doi:10.1097/ 00126334-200304010-00016 Kendall, C., & Hill, Z. (2010). Chronicity and AIDS in three South African communities. In L. Manderson & C. Smith-Morris (Eds.), Chronic conditions, fluid states: Chronicity and the anthropology of illness (pp. 175–194). New Brunswick, NJ: Rutgers University Press. Kim, J., Watts, C. H., Hargreaves, J. R., Ndhlovu, L. X., Phetla, G., Morison, L.A., … Pronyk, P. (2007). Understanding the impact of a microfinance-based intervention on women's empowerment and the reduction of intimate partner violence in South Africa. American Journal of Public Health, 97, 1794–1802. doi:10.2105/AJPH.2006.095521 Koenig, M. A., Lutalo, T., Zhao, F., Nalugoda, F., Kiwanuka, N., Wabwire-Mangen, F., … Gray, R. (2004). Coercive sex in rural Uganda: Prevalence and associated risk factors. Social Science & Medicine, 58, 787–798. doi:10.1016/S0277-9536(03)00244-2 Krishnan, S., Dunbar, M. S., Minnis, A. M., Medlin, C. A., Gerdts, C. E., & Padian, N. S. (2008). Poverty, gender inequities, and women’s risk of Human Immunodeficiency Virus/AIDS. Annals of the New York Academy of Sciences, 1136(1), 101–110. doi:10.1196/annals.1425.013 Krug, E. G., Mercy, J. A., Dahlberg, L. L., & Zwi, A. B. (2002). The world report on violence and health. The Lancet, 360, 1083–1088. doi:10.1016/S0140-6736(02)11133-0 Marsland, R. (2012). (Bio)Sociality and HIV in Tanzania: Finding a living to support a life. Medical Anthropology Quarterly, 26, 470–485. doi:10.1111/maq.12002 Mattes, D. (2011). “We are just supposed to be quiet”: The production of adherence to antiretroviral treatment in urban Tanzania. Medical Anthropology, 30, 158–182. doi:10.1080/01459740. 2011.552454 Mattes, D. (2012).'‘I am also a human being!’ Antiretroviral treatment in local moral worlds. Anthropology & Medicine, 19(1), 75–84. doi:10.1080/13648470.2012.660463 McGrath, J. W., Kaawa-Mafigiri, D., Bridges, S., & Kakande, N. (2012). ‘Slipping through the cracks’: Policy implications of delays in HIV treatment seeking. Global Public Health, 7, 1095– 1108. doi:10.1080/17441692.2012.701318 McGrath, J. W., Winchester, M. S., Kaawa-Mafigiri, D., Walakira, E., Namutiibwa, F., Birungi, J., Ssendegye, G., … Rwabukwali, C. B. (2014). Challenging the paradigm: Anthropological perspectives on HIV as a chronic disease. Medical Anthropology, 33, 303–317. doi:10.1080/ 01459740.2014.892483 Meinert, L., Mogensen, H., & Twebaze, J. (2009). Tests for life chances: CD4 miracles and obstacles in Uganda. Anthropology & Medicine, 16, 195–209. doi:10.1080/13648470902940697 Nguyen, V. (2007). Adherence as therapeutic citizenship: Impact of the history of access to antiretroviral drugs on adherence to treatment. AIDS, 21(Suppl 5), S31–S35. doi:10.1097/01. aids.0000298100.48990.58 Nguyen, V. (2010). The republic of therapy: Triage and sovereignty in West Africa’s time of AIDS. Durham, NC. Duke University Press. Nyanzi, S., Emodu-Walakira, M., & Serwaniko, W. (2009). The widow, the will and widowinheritance in Kampala: Revisiting victimization arguments. Canadian Journal of African Studies, 43(1), 12–33. doi:10.1080/00083968.2010.9707581 Parikh, S. (2009). Going public: Modern wives, men’s infidelity, and marriage in east central Uganda. In J. S. Hirsch, H. Wardlow, D. J. Smith, H. M. Phinney, S. Parikh, & C. A. Nathanson (Eds.), The secret: Love, marriage, and HIV (pp. 168–196). Nashville, TN: Vanderbilt University Press.
Downloaded by [Deakin University Library] at 16:06 05 November 2015
894
M.S. Winchester
Rabkin, M., & El-Sadr, W. M. (2011). Why reinvent the wheel? Leveraging the lessons of HIV scale-up to confront non-communicable diseases. Global Public Health, 6, 247–256. doi:10.1080/17441692.2011.552068 Reniers, G., & Watkins, S. (2010). Polygyny and the spread of HIV in sub-Saharan Africa: A case of benign concurrency. AIDS, 24, 299–307. doi:10.1097/QAD.0b013e328333af03 Richey, L. A. (2012). Counseling citizens and producing patronage: AIDS treatment in South African and Ugandan clinics. Development and Change, 43, 823–845. doi:10.1111/j.14677660.2012.01782.x Russell, S., & Seeley, J. (2010). The transition to living with HIV as a chronic condition in rural Uganda: Working to create order and control when on antiretroviral therapy. Social Science & Medicine, 70, 375–382. doi:10.1016/j.socscimed.2009.10.039 Russell, S., Seeley, J., Ezati, E., Wamai, N., Were, W., & Bunnell, R. (2007). Coming back from the dead: Living with HIV as a chronic condition in rural Africa. Health Policy and Planning, 22, 344–347. doi:10.1093/heapol/czm023 Russell, S., Seeley, J., & Whiteside, A. (2010). Expanding antiretroviral therapy provision in resourceconstrained settings: Social processes and their policy challenges. AIDS Care, 22(Suppl 1), 1–5. doi:10.1080/09540121003786078 Rwabukwali, C. B. (2008). Gender, poverty, and AIDS risk: Case studies from rural Uganda. In D. Feldman (Ed.), AIDS, culture, and Africa (pp. 239–255). Gainesville: University Press of Florida. Ryan, G., & Bernard, H. R. (2003). Techniques to identify themes. Field Methods, 15(1), 85–109. doi:10.1177/1525822X02239569 Singer, M. (2009). Introduction to syndemics: A systems approach to public and community health. San Francisco, CA: Jossey-Bass. Strathdee, S., Wechsberg, W., Kerrigan, D., & Patterson, T. (2013). HIV prevention among women in low- and middle-income countries: Intervening upon contexts of heightened HIV risk. Annual Review of Public Health, 34, 301–316. doi:10.1146/annurev-publhealth-031912-114411 Thornton, R. (2008). Unimagined community: Sex, networks, and AIDS in Uganda and South Africa. Berkeley: University of California Press. Uganda AIDS Commission. (2012). Uganda global AIDS response progress report 2012. Kampala: Author. Uganda Bureau of Statistics & ICF International Inc. (2012). Uganda demographic and health survey 2011. Kampala: Uganda Bureau of Statistics and Calverton; MD: ICF International Inc. UNAIDS. (2013a). Global report: UNAIDS report on the global AIDS epidemic 2013. Geneva: Author. UNAIDS. (2013b) Global update on HIV treatment 2013: Results, impacts, and opportunities. Geneva: Author. UNITAID. (2010). UNITAID annual report 2010. Geneva: WHO. Vitoria, M., Vella, S., & Ford, N. (2013). Scaling up antiretroviral therapy in resource-limited settings: Adapting guidance to meet the challenges. Current Opinion in HIV and AIDS, 8(1), 12–18. doi:10.1097/COH.0b013e32835b8123 Wawer, M. J., Gray, R., Serwadda, D., Namukwaya, F., Makumbi, F., Serwankambo, N., … Quinn, T. (2005). Declines in HIV prevalence in Uganda: Not as simple as ABC. Paper presented at 12th conference on retroviruses and opportunistic infections, Boston, MA [Abstract #27LB]. WHO, UNICEF, & UNAIDS. (2011). 2011 progress report: Global HIV/AIDS response. Epidemic update and health sector progress towards universal access. Geneva: WHO. Whyte, S., Whyte, M., Meinert, L., & Kyaddondo, B. (2004). Treating AIDS: Dilemmas of unequal access in Uganda. SAHARA-J: Journal of Social Aspects of AIDS, 1(1), 14–26. doi:10.1080/ 17290376.2004.9724823 Winchester, M. (2011). Living with globalization: The intersection of intimate partner violence and HIV infection in Uganda (Unpublished doctoral dissertation). Department of Anthropology, Case Western Reserve University, Cleveland, OH. World Health Organization (WHO). (2002). World report on violence and health. Geneva: Author. Retrieved from http://whqlibdoc.who.int/publications/2002/9241545615_eng.pdf
