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HIV disclosure and other factors that impact on adherence to antiretroviral therapy: the case of Soweto, South Africa Nokuthula L Skhosana , Helen Struthers , Glenda E Gray & James A McIntyre Published online: 11 Nov 2009.

To cite this article: Nokuthula L Skhosana , Helen Struthers , Glenda E Gray & James A McIntyre (2006) HIV disclosure and other factors that impact on adherence to antiretroviral therapy: the case of Soweto, South Africa, African Journal of AIDS Research, 5:1, 17-26, DOI: 10.2989/16085900609490363 To link to this article: http://dx.doi.org/10.2989/16085900609490363

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HIV disclosure and other factors that impact on adherence to antiretroviral therapy: the case of Soweto, South Africa Nokuthula L Skhosana*, Helen Struthers, Glenda E Gray and James A McIntyre

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Perinatal HIV Research Unit, Chris Hani Baragwanath Hospital, PO Box 114, Diepkloof, Johannesburg 1864, South Africa * Corresponding author, e-mail: [email protected]

Some authors argue that there are no predictors of adherence to medication, while others proffer indicators of likely adherence. These contextual factors are wide-ranging and may be interdependent. There are few studies of adherence in resource-poor settings. Of these, many were linked to particular trials whose conditions were highly controlled. For instance, the number of participants in the trial was small, the participants were strictly selected and they were offered much adherence support. These conditions will largely fall away with wider access to antiretroviral drugs (ARVs) such as South Africa is undertaking. Poor adherence remains one of the challenges to scaling-up access to ARVs, and, as such, the likely barriers to adherence need to be understood and countered. This study explores contextual factors — such as disclosure, preparation for treatment, treatment meaning and treatment acceptance — as aspects of lifestyle that can bear on adherence. Those who had disclosed were largely supported at household level, and after initial problems with adherence, participants adjusted and were able to include ARV treatment in their daily repertoire. Although the anticipation of stigma remains an obstacle to wide disclosure, antiretroviral therapy offers new hope and has the potential to impact on stigma. Keywords: clinical trials, household, gender, psychosocial, stigma, treatment literacy

Introduction The South African government’s position on providing antiretroviral drugs (ARVs) to all who need them has been dogged by much controversy. The scientific efficacy of such drugs has, by turn, been questioned at the highest political level, as has the availability of the infrastructure to carry out sustained distribution. Much effort has been focused on the structural barriers to providing ARVs, with less emphasis given to the everyday dynamics of adhering to therapy, although adherence was proffered as one of the reasons for not providing antiretroviral drugs in the public sector. While it is important to understand the logistical barriers to sustained and structured access, it is also important to understand the psychosocial aspects of individual adherence. Rolling out the provision of ARVs is, at the end of the day, as good as the ability of users to adhere. Effective ARV treatment can be affected by a number of factors. Adherence to antiretroviral therapy is particularly important if we consider the implications of cross-drug and drug resistance (Cheever & Wu, 1999). According to Bedell, Jabbour, Goldberg, Glaser, Gobble, Young-Xu, Graboys & Ravid (2000), of the patients living with HIV/AIDS approximately one-third take their medication as prescribed. Adherence rates to antiretroviral therapy have been shown to be similar to those of other chronic diseases, hovering at 40–50% (Lerner, Gulick & Dubler, 1998; Cheever, 2000). So what is adherence? Adherence is “the extent to which a person’s behaviour — taking medication, following a diet,

executing lifestyle changes — follows medical advice,” cited Haynes in WHO (2003, p. 158). In the case of antiretroviral therapy, adherence means taking the prescribed regimen of drugs in the right doses, at the same time, everyday for a lifetime. This is a process that requires adjustment over time and across different aspects of one’s lifestyle. The report by WHO (2003) on adherence to long-term therapies cautions that efforts to understand adherence-related behaviour should go beyond a focus on patient-related factors and also include provider- and health-system-related determinants. Bearing this in mind, this paper nevertheless focuses on patient-related factors that influence adherence. Although discussed in passing, provider- and health-system-related determinants are beyond the scope of this paper. It was not the purpose of the study to measure adherence per se, rather the aim was to explore factors that might bear on adherence. This study was guided by the very open-ended question of what are the everyday lived experiences of people living with HIV/AIDS (PLHA) in Soweto who are on antiretroviral treatment (ART). In this instance, “adherence” is inferred from the narratives of participants and their perceptions about their level of adherence. The emphasis on the everyday lived experiences of participants receiving ART is informed by the recognition that being HIV-positive is not just a single crisis moment but a complex ongoing process. We suggest that people’s ways of dealing with HIV involve manoeuvres, negotiations, adaptation and growth. In this way, we would work against depersonalising or over-

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general approaches to the pandemic. This study has also set out to explore the following: preparation for treatment, knowledge of treatment, the impact of disclosure on adherence to ARV therapy, coping strategies and gender-specific dynamics that might influence adherence. One cannot write about issues related to HIV/AIDS in a country like South Africa without considering the impact of stigma. HIV/AIDS is largely a stigmatising condition that impacts negatively on the quality of life of those infected and those affected by the epidemic. However, little is known about the impact of actual, perceived or anticipated stigma on compliance to antiretroviral treatment. The factors that facilitate or hinder adherence differ from context to context and between individuals (see report on adherence to longterm therapies by WHO, 2003). Stigma and disclosure generally have an inversely proportional relationship: the higher the chances of stigma, the lower the likelihood of disclosing. This has a bearing on the ability to adhere to medication — as lessons from elsewhere suggest that social support is crucial for adherence (Ferri & Kirton, 2003). Non-disclosure has two possible effects: self-protection from prejudice, and, on the down side, the inability to tap into social support. This paper will argue that there is a complex and multi-factorial relationship between disclosure and adherence. By focusing on the lived everyday aspects of adherence, we suggest that adherence is a process that includes influential factors such as treatment literacy, social support and gender, among others. We suggest that unless potentially confounding factors are disaggregated, understood and countered, ARV provision might be yet another intervention that fails to meet its targeted objectives. Theoretical background Most available literature on adherence focuses on the United States and other developed counties where ARV therapy is routinely available. In such countries, AIDS is no longer considered a terminal condition, but rather a chronic disease. Despite the wide availability of ARV treatment in the United States, compliance remains a problem. Several factors have been cited to account for this: …treatment adherence in HIV disease is a complex clinical, cultural and social problem. It has been estimated that an adherence rate of 95% is required to achieve adequate viral suppression. Demanding this near-perfect rate is difficult. However, coupling the issues with the need for lifetime therapy and toxic side-effects make adherence a true clinical challenge. In addition to these common barriers to adherence, living with increased stress and mental illness can further complicate this already complicated issue (Ferri & Kirton, 2003, p. 7S). Living with HIV/AIDS is a challenge on its own, especially in contexts where HIV infection still carries a stigma and consequently PLHA lack necessary social support. In such situations, adherence to therapy becomes an added challenge. Accomplishing the required near-perfect adherence rate becomes all the more crucial considering the implications of drug and cross-drug resistance. Adherence to ARV treatment has been linked to, among other things, personal characteristics, patient treatment knowledge, faith

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in the efficacy of the drugs, social support, the relationship between the patient and healthcare provider, drug availability, and an overall will to survive despite the odds (Cheever & Wu, 1999). Antiretroviral therapy is characterised as complex: it requires a life-long commitment, the combination of drugs to be taken at one time may be confusing and may cause side-effects, a strict routine and dosage are demanded, storage instructions are strict, and there is usually the added burden of special dietary requirements (Cheever & Wu, 1999). On the other hand, the benefits of adhering to treatment are many: a longer life and a healthier immune system leading to less illness and lower risk of infecting others with HIV, and as such these should counter barriers to adherence. However, this is an idealised scenario that might be achieved only if humans were always rational beings who behaved in ways that diminish perceived threats and enhance perceived benefits (at whatever cost). Chances of adherence are greatly improved when the patient takes an active part in formulating the treatment plan (see WHO, 2003). Honest and open communication between the patient and healthcare provider about the potential barriers to adherence is advisable when planning the treatment. The needs and peculiar circumstances of the individual have to be considered when formulating a treatment plan (WHO, 2003). Factors such as whether the subject works during the day or at night (or at all), whether he/she has a refrigerator and access to transport, and personal support of any kind are relevant to adherence. Safren, Hendriksen, DeSousa & Boswell (2003) also argue that a perception of HIV infection as punishment undermines HIV treatment adherence. In the same vein, ART may be a constant reminder of one’s HIV-positive status and so can be psychologically stressful. This raises the important question of the psychosocial and cultural meanings of HIV infection and treatment. In South Africa, widespread denial of HIV/AIDS has condemned those infected and affected to silence and isolation, perpetuating shame and self-blame. While it is generally believed that disclosure and active participation in matters related to HIV/AIDS by prominent citizens might help eradicate the stigma of HIV infection, widespread activism by ordinary people also has this potential. The activism shown by the Treatment Action Campaign (TAC), for instance, is a public statement that AIDS does not have to be a death sentence. It is a display of public commitment to ARV treatment, bolstering the image of this treatment that has received such widespread criticism in South Africa. These factors inform the context within which individuals make decisions about HIV treatment. Gender and adherence It has been recognised that some experiences of living with HIV/AIDS have a gender dimension, as different issues and concerns confront men and women (Green, 1996). Gendersensitive research highlights some of the issues that disproportionately affect women: Women are thus affected by HIV disease as caregivers and as persons in need of care, and not infrequently as both. More often than is the case for

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men, women living with HIV are members of families in which other members — children, spouse or others — also have HIV disease. In these circumstances, their own care needs may be neglected because of competing demands for the care of others (Crystal & Sambamoorti, 1996, p. 192). The double burden of being caregiver and person in need of care adds another dimension that might have implications for how women deal with their own infection in the context of other demands. Studies on adherence have not been explicit about the gender-specificity of HIV/AIDS. Poor women are said generally to have less access to healthcare (Wheal, 1997). However, in South Africa, with the current screening for and diagnosis of HIV at antenatal clinics, women who would not ordinarily receive care and treatment do. In fact, indications are that more women than men have verified their HIV status and are more likely to pursue treatment options (Boulle, 2003). The endemic violence against women in South Africa and AIDS genderblaming,1 however, might discourage positive health behaviour despite relatively early diagnosis. Unfortunately, women have been shown to be subjected to violence when disclosing an HIV-positive status (Ndiaye, 2000; Tallis, 2000; Maman, Mbwambo, Hogan, Weiss, Kilonzo & Sweat, 2001; Vetten & Bhana, 2001). This may discourage efforts to protect oneself from re-infection and may have an adverse impact on adherence. Crawford, Lawless & Kippax (1997) point out a contradiction inherent in many heterosexual relationships: although denied agency in sexual matters, women in such relationships are expected to be responsible for “safer sex”. This contradiction closely links with the observation that women are often blamed for their own HIV infection and that of their partners and children. Hence guilt, shame, responsibility and feelings of unworthiness remain the dominant discourses that characterise women’s infection (Crawford et al., 1997). Crawford et al. (1997) note that while both men and women have difficulty disclosing an HIV-positive status, women find it particularly difficult. “Women’s responsibility for others and the fear that those close to them, particularly children, will be subjected to what has been called ‘courtesy stigma’2 (Goffman, 1963) is perhaps the greatest barrier to disclosure and the source of greatest fear associated with disclosure” (Crawford et al., 1997, p. 4). These fears are likely to be accentuated in a new mother whose HIV infection is more likely to have implications for her baby. HIV/AIDS-related gender blaming goes beyond the experiences of women at the hands of their male counterparts. Men have also borne the brunt of this finger-pointing. Discounting the agency of women in sexual relationships (albeit within constraints), men have been disproportionately blamed for the spread of HIV/AIDS. Trapped in the web of gender stereotypes, HIV/AIDS discourse and concomitant perceptions have largely painted men as inherently bad. The overemphasis of HIV/AIDS interventions on women has been informed by attitudes that sought to protect and rescue women from heterosexual relationships that put them at risk of HIV infection. There is, however, a shift occurring in HIV/AIDS interventions. There is increased recognition of the importance of involving men in these initiatives in order to improve their effectiveness. This

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recognition of men as essential partners in HIV prevention is a far cry from the implicit condemnation of men that characterised earlier prevention initiatives. There remains a need to understand “what makes men tick” in order to introduce programmes that will attract them and impact on their behaviour. To this end there remains a need to destabilise those destructive social constructions of masculinity which encourage reckless sexual behaviour and lack of cooperation with initiatives against the spread of HIV/AIDS. One way is to use the social networks of men to effect this change. As masculinity is a social construct that is ostensibly pliable, early adopters of prevention messages could be employed to influence the behaviour of other men. A gender-balanced approach to HIV management has the potential to have the maximum benefit for families in the long run. The importance of treatment literacy: lessons from other studies Treatment literacy can be defined as promoting patients’ understanding of their therapy. Patients learn about the principles of ART, the drugs prescribed, the adverse events, and the monitoring tests required (adapted from a 2003 report by Médecins Sans Frontières). Meticulous counselling is needed to prepare individuals for treatment. The need for constant ongoing and effective dialogue between the patient and healthcare worker cannot be discounted. Taking ARVs is a life-long commitment that will pose different challenges for different people at different stages of therapy. One way to share the responsibility of proper drugtaking between the healthcare worker and the recipient of care is to educate the recipient. This should be done during counselling sessions but cannot replace the need for ongoing, beyond-the-clinic-setting education. There is also a need to learn from the studies that have been done in South Africa so far. The Médecins Sans Frontières’ (MSF) project in the Eastern Cape reports high levels of adherence among the people involved in one of their studies (Coetzee, Hildebrand, Boulle, Maartens, Louis, Lebatala, Reuter, Ntwana & Goemaere, 2004). This is partly attributed to strict selection criteria, ongoing support and roping-in a treatment assistant to encourage adherence. The influence of the TAC, whose objectives include educating communities about ARVs and which is very active in the Western and Eastern Cape, might also have played a role in the adherence levels exhibited by this group. Clearly, these conditions cannot be optimally adhered to now that treatment is available to all. The selection criteria (which are beyond clinical criteria) will fall away in many cases, compounding the likely challenges to adherence. Dr Orrel and colleagues found that adherence rates in poor people in Cape Town were as good as, if not better than, those in the US and Europe. Their study, whose trials were carried out between January 1996 and May 2001, and published in June 2003, argues that adherence is not a barrier to successful antiretroviral therapy in South Africa (Smart, 2003). Dr Orrel and colleagues argue that socioeconomic status is not a factor to adherence in their cohort. Furthermore: The high proportion of adherence in the Somerset study is particularly noteworthy because there was

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no dedicated adherence counselling service, structured adherence support or formal adherence intervention as part of treatment. The patients only had access to the trial site for one to two hours every two or three months and there were no off-site visits (Smart, 2003). The researchers attribute the high level of adherence to strict selection criteria — individuals had to be highly motivated to get into the trial. Adherence is also attributed to the dramatic reverse of health status brought about by treatment. Limited access to ARVs in South Africa is also said to have contributed to the high rate of adherence. It would be further encouraging if these results could be demonstrated in other similar contexts.

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Methodology The data presented are from a study conducted in Soweto between January and May 2004. Semi-structured interviews were the main data-gathering method. This method was triangulated with observations and field notes. Participants were recruited from the Perinatal HIV Research Unit in Soweto and the Right to Care clinic in Parktown. All participants however lived in Soweto. The distinction between clients from the two venues is not highlighted in this paper as it has little bearing on the arguments made. Convenience and snowball sampling methods were used to recruit participants. This could be a limitation as only those clients who were adherent might have volunteered to take part in this study. Interviews took place at the participants’ preferred venue, with clients from the Perinatal HIV Research Unit generally preferring to be interviewed at the unit and those from Right to Care preferring interviews scheduled between their clinic visits. Altogether, 38 one-to-one interviews were conducted: 32 with women and six with men. Recruiting men for this study was very difficult. The study was approved by the University of the Witwatersrand Research on Human Subjects Ethics Committee and as such was guided by strict ethical guidelines. As the researchers for this study were not part of clinical trials, they were perceived as offering a muchneeded safe space where clients could relate their stories. Tape recordings were transcribed and translated into English. Data were analysed inductively using grounded theory (Glaser, 1978). Findings Participants in this study had been on HIV treatment for varying lengths of time. The journey to accessing antiretroviral treatment (ART) had not been easy and, in many instances, influenced their assessment of the impact of ART on their lives. While some had disclosed3 to people they trusted, such as their mothers4 and sisters, others had not disclosed their HIV-positive status and thus antiretroviral treatment at all. Those who had disclosed might have been forced to do so by recurring bouts of illness, both of themselves and those of their infected children. In general, those who had disclosed had anticipated negative reactions, but these were minimal, with most participants reporting

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support and understanding.5 In this regard, a remark made by one participant that for some it takes a family member to be infected for them to understand and empathise, seems to hold true. HIV/AIDS prevalence in Soweto is high, with antenatal estimates around 30% (Perinatal HIV Research Unit, 2006). Therefore, it is likely that most families in Soweto are affected by the HIV/AIDS epidemic, and for this reason to expect that stigma and discrimination would be impacted upon seems reasonable.6 The data presented suggests that being on treatment either encouraged or discouraged disclosure. Those who decided to disclose after enrolling in clinical trials were excited by the prospect and wanted to share the hope that ARVs offered them with others. This is after wrestling with the secret of living with HIV/AIDS and keeping it bottled up for a while. On the other hand, those who chose not to disclose even when offered this new hope did not want to worry their families unnecessarily now that they were on treatment. Disclosure and adherence This study did not suggest a direct relationship between disclosure and adherence to ART. There were a number of mediating factors, such as with whom the individual resides, the timing of taking medicines, and the lack of awareness of people sharing the living space about the strict regimens required for ART. For instance, a single mother, aged 37, who stayed with her three children and had not disclosed to anyone, was highly adherent. A single mother of a two-year-old girl, who stayed with her elderly parents and younger siblings and who had not disclosed to any of them, was also highly adherent. She took her medication openly and had explained it as a contraceptive. Other participants who already had other medical problems that were known to members of the household explained that the medication was for this. This type of behaviour, however, will be impacted upon by the growing visibility of ARVs in the mass media. Those participants who had not disclosed or had disclosed their medication in other terms were particularly worried by this: ‘They have never asked, except my child who once saw ARVs on TV and asked me why the medication was the same as mine and they were talking about HIV-positive people. I had to dodge the question and I just said the containers were the same but the contents were different and that was how it ended’ (31-year-old mother of two). ‘You see, to start treatment is very difficult because I take tablets that are advertised on TV when they talk about ARVs and Nevirapine, so it is difficult because I did not disclose at home that I’m taking the tablets that are advertised on TV’ (30year-old mother of two). ‘I am staying in a shack so I take my tablets in there, although I had a problem with my child, the one who is 15 years old. Although she has not asked about my tablets, but a child is a child, she does see on TV what the tablets are for’ (38-yearold mother of three).

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The growing discussion on ARVs in the media also prompted some participants to disclose: ‘What led me to tell my 18-year-old daughter was that the tablets I am taking were shown on television and she said here are the tablets that my mother is taking. It occurred to me that I must sit her down and explain to her, because sometimes she will be with friends and she will say here are the tablets that my mother is taking’ (36-year-old mother of three). The lengths to which people went to hide the real explanation for their medicine indicated underlying problems such as fear of stigmatisation and discrimination. On the other hand, it could be that the people with whom the person on antiretroviral therapy shared a living space were aware of the medication and might be suspicious but did not have the courage to broach the subject: “They know, we know, their families know that this is AIDS but as long as that small word is not spoken in their community, the pretence can be maintained” (Cullinan, 2002). In a mature epidemic such as we have in Soweto, chances are that other household members might also be wrestling with their own (or potential) HIV infection. Open discussion of antiretroviral therapy, such as is the case with TV adverts might, in fact, normalise HIV infection by taking the responsibility to disclose away from individuals. This study highlighted that participants went to all sorts of lengths to remain adherent even if they had not disclosed their HIV-positive status and thus antiretroviral therapy to the people with whom they lived. Adherence and lifestyle While the social support gained from disclosure could enhance the possibility of adherance through, for instance, reminders to take one’s medicine, the personal characteristics and lifestyle of the individual might be other important predictors of adherence: ‘My wife and I agreed that since this is our status we would have to mend our ways. I used to drink a lot but after I discovered my status I cut down my drinking. I stopped smoking. I am on treatment, but the only thing that really helps is quitting. If I was still drinking I doubt if I would still be alright. Alcohol makes one to forget to take meals, to take tablets… we accepted it and we decided to go on with life and live positively because we were not yet dead anyway’ (35-year-old father of two). ‘I no longer take alcohol because when one drinks one forgets to do what one is supposed to do’ (29year-old father of one). ‘There is need for one to change their attitude and lifestyle and one needs new friends with whom one can share the same things, because if one still has old friends who are not positive, even if one does not disclose to them, one day the signs will show and they will start talking about you and that hurts. It pulls you down. It is better to try new friends and a new atmosphere’ (36-year-old mother of one). ‘I would like to advise the public that if one does not have hope in oneself then one will not survive,

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but if one has hope, one will do everything with the intention to survive. One should have the determination to live and that will help one live longer’ (31year-old mother of one). A positive attitude and change of lifestyle were seen as important to adherence and overall well-being. Some of the participant’s important friendships sprung from a common HIV/AIDS diagnosis. Visiting friends and relatives sometimes posed a problem as the need to explain the medication may arise, and for this reason such visits were avoided. Coupled with this was that individuals on HIV treatment could no longer afford to be spontaneous about their movement. Visits had to be planned with treatment in mind. Failure to do this may result in non-adherence. Holidays were also said to be time out of the ordinary, with increased drinking and socialising, increasing the potential for nonadherence. A number of common strategies, such as setting the alarm clock and using pill boxes, were employed as reminders to take medication. There were also some idiosyncratic strategies, such as timing the taking of medication to coincide with particular programmes on the radio or TV. With time, as treatment became part of the daily routine, the importance of these reminders diminished: ‘I have gotten used to them. They are now like part of my meal. At first I used to remind myself so that I could get better, but now I am used to them’ (53-yearold mother of five, who began treatment in 2001). ‘The tablets and me are married. I drink them like nothing; they are not something I can forget. They are something that is in me. When you do something everyday it ends up a habit’ (25-year-old father of one who had been on treatment since 2000). ‘I just feel it. If it is ten o’clock and I feel thirsty I then remember to take my medication. My body tells me. I have gotten used to them’ (23-year-old mother of one who began treatment in 2000). When the majority of participants in this study started ART, they did not know anyone who was also on the same treatment against whom they could satisfy themselves that the treatment is efficacious. They had to take this on faith. This required courage, especially because antiretroviral therapy received much condemnation and negative publicity in South Africa, with both the President and the Minister of Health questioning the scientific efficacy of the drugs. The same courage to join clinical trials amid these unfavourable conditions was needed to meet the challenges of adherence and turning over a new leaf to bolster one’s health. Participants in this study also felt fortunate to be on clinical trials for which there was a high demand amid scarce antiretroviral drugs. Changing one’s lifestyle was seen as part of the package. While the rigidity inherent in ART was perceived as stressful, participants in this study had, to varying degrees, adjusted to the requirements of the treatment. With or without the help of family and peers, they had to resort and stick to lifestyle changes that included their choice of sexual partners who supported their status as people on ART. These changes and the resultant benefits from ART were perceived as overwhelmingly positive, offering a new lease on life:

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‘My husband died of AIDS in 2000. Since I have been taking these tablets I told myself that I’m a person, not a person living with HIV/AIDS. I do get sick like any other person; I do not tell myself that it is because I am HIV-positive. Even when I walk in the street nobody will say that I am HIV-positive’ (30year-old mother of two). ‘When I changed to the second combination there was a great change in my life. My body no longer ached, I became strong. I am back to my old self’ (29-year-old mother of one). ‘Before I was on treatment I told myself that I don’t have a life anymore, I am going to die. At that time I had lost weight. At that time I did not want to work and I did not want to go for counselling training and help other people. But now because of these tablets I am fat, you won’t see that I’m HIV-positive. Now I am going forward and looking for a job because I now have a counselling certificate’ (30-year-old mother of two). Antiretroviral therapy was viewed positively despite the daunting fact that it requires a lifetime commitment. Participants had resigned themselves to this although it was sometimes perceived to be stressful. There was also the danger of treatment fatigue. However, the thought of committing to a lifetime of antiretroviral therapy was mediated by hope for a cure: ‘As I am on medication I feel hopeful that one day there will be a cure, I will then be cured. At least I will still be alive’ (36-year-old mother of one with a post-matric qualification). ‘I have hope. Even the counsellor who counselled me told me that I should take treatment and maybe along the way a cure would be found’ (31-year-old mother of two with a post-matric qualification). Lifestyle changes were seen as integral to adherence and the overall quality of life that ART promised. Adherence and treatment literacy Patient treatment literacy was also an important predictor of adherence. Some participants in this research, who had started treatment at the beginning of 2000, had changed regimens because they had developed resistance. Changing one’s medical regimen may constitute a new phase in adherence and disclosure. Many cited treatment illiteracy as a major cause of non-adherence: ‘I have changed [regimens] three times. First time I developed resistance and I sometimes think that I am partially to blame, but I do not really blame myself because if one is going to be given treatment, one should receive counselling before getting the medication. During that counselling one should be educated on how to take the medication properly. People should not be told that ARVs are not like any other medication like Panado [paracetamol]. I was just told that I should take my medication every day…I had not been told to take my medication at the right time. For me I thought it was like any other medication’ (29-year-old mother of two who began treatment in 2000).

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‘The [private] doctor did not educate me. He just told me that this medication is now part of my life and I should take them correctly. He said I should not miss a dose. I learnt that I have to take them at the same time everyday at the support group’ (33year-old domestic worker who first received treatment from a private doctor in 2002). ‘Sometimes when you drink them as you were told, they would burn you — have this burning sensation that could last up to two days. What is needed is to take a break for a while from taking them. Sometimes during weekends I used to stop taking them. Maybe on Saturday stop for a while’ (33-year-old mother of three who had been on treatment since 1998). One finding of this study was that the manner in which adherence messages were communicated to patients was ambiguous, and thus open to multiple interpretations. This is especially important in a context where the strict regimens required of ART have no precedent. This study also suggests that the preparation of clients for clinical trials improved with time. General lack of HIV testing in the country at the time meant that PLHA showed up for clinical care with a low CD4 count, creating the need to begin treatment urgently. The need to expedite the initiation of treatment was, however, balanced with very close monitoring of patients. One-to-one counselling was usually ill-timed (offered just after an HIV-positive diagnosis, when the client could not have been in a position to take in everything that is said) and was not supplemented by mass education on HIV/AIDS and more specifically on ART. Adherence counselling is a recent introduction in the clinical care of PLHA on ART. The threat of developing resistance and being taken off the trial was a wake-up call for some participants: ‘They changed my combination because I developed resistance. At that time I did not take my medication correctly…they promised to withdraw me from the trial. I felt bad’ (23-year-old mother of one who started treatment in 2000). Perception of treatment efficacy was also suggested to be a major factor in adherence. Side-effects were generally not a deterrent to continuing with treatment. These were generally mild and were well-managed by doctors. Moreover, the possibility of experiencing side-effects was communicated and they were anticipated. From this point of view, it seems that the attention given to this aspect of ART led to its demystification, allowing clients to make an informed choice with regards to therapeutic trial participation. Adherence to antiretroviral therapy and the quality of life The improved quality of health for trial participants led to an improved quality of life. In this study, many participants considered being on ART a second chance with new aspirations: ‘What I need is a job because now I live like a normal person…I have energy, I can do anything. Now I can start afresh and live right…I have told myself that God has given me a second chance so I have to try and use this opportunity I have now’ (31year-old female).

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African Journal of AIDS Research 2006, 5(1): 17–26

‘Before I started treatment I did not have a vision and hope. I was telling myself that I was going to die, but since I received treatment my life is OK. I would like to continue with my studies so I can get a better job’ (33-year-old male). Consistent monitoring and communication of a person’s CD4 count and viral load motivated adherence. On the other hand, improved quality of life led to casualness about taking treatment: ‘Sometimes one forgets, just like now I was supposed to take them at nine. I will take them when I arrive at work; I make sure that I take them for the day (36-year-old female who has been on treatment since 1997). ‘Yes, sometimes I forget, like if I am in a hurry or if I have important things to take care of in town, but if I come back before 12 noon, I take them’ (31-yearold mother of two). Procedure at the Perinatal HIV Research Unit is that visits to consult the doctor decrease as the client proves faithful to taking the required drug regimen properly. However, this research suggests that decreased monitoring sometimes encouraged lapses in taking treatment, especially if this does not seem to have any negative effects: ‘Before, because I was on a study that was very strict, I took medication at a certain time and I had to bring the tablets to be counted — it was more strict than now — if seven has passed, I will take them at eight. I am more relaxed now than when I started, that is the only difference’ (32-year-old mother of one with a post-matric qualification). This fluctuation in adhering to ART highlights that adherence is a process liable to various influences over time. There is widespread agreement that adherence support must be integrated into clinical follow-up and must be continuous. Understanding gender dynamics: towards a new ethos in HIV prevention It remains a puzzle why men are not taking a much more active role in accessing HIV/AIDS services. Our experience at the Perinatal HIV Research Unit is that far fewer men than women attend the HIV/AIDS-dedicated Wellness Clinic and take part in clinical trials. This could be partly attributed to the fact that the bulk of our clients are referred to these services through the prevention-of-mother-to-child-transmission (PMTCT) initiatives. However, some effort has also been made to recruit men as partners and men in their individual capacity. As with these efforts, attempts to draw men’s opinions on these issues were not entirely successful, hence the over-representation of women’s voices in gender-related issues. Perhaps one of the reasons men do not take an active involvement in HIV/AIDS-related issues is the tacit blame that seems to be heaped on them. Men are blamed for social ills such as violence against women and irresponsible sexual behaviour. Presenting all men as pariahs of society will not win them over. HIV/AIDS service providers and research organisations need to cultivate a nonjudgemental attitude towards men to help them embrace

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services. Focusing all attention on women and leaving men in the cold, especially in efforts to prevent the spread of HIV/AIDS, is counter-productive. While the notion that empowering one party is automatically at the expense of the other party has been dispelled in development discourse, this seems to be true in the context of HIV/AIDS. HIV/AIDS initiatives that are not sensitive to the needs of both men and women do not promote amicable heterosexual relationships. Our female participants spoke of how after having been counselled and educated to live positively with HIV/AIDS, they returned to homes and relationships that are not sensitive to this: ‘[Counselling] was OK but when one goes back home things return to normal’ (34-year-old mother of one referring to the difficulties of negotiating condom use). Focusing on women as a unit of care places undue responsibility on them for the practice of safer sex. This is despite the recognition that women in heterosexual relationships generally have limited power in negotiating the terms of the sexual relationship. The women in this study had to choose between relationships that do not accommodate the practice of safer sex and remaining in the clinical trials: ‘The father of my child did not want to use a condom. He said it makes one sick. I will be the one who gets sick, because the more I sleep with him without a condom, the more I will be infected, because I do not know how much his virus is and then it will add onto mine. I decided to leave him; he will decide how he will live his life as long as I can live for my children’ (28-year-old mother of two). ‘When I told him [that I am HIV-positive], he said he is [HIV] negative…at first he was supportive when he saw me taking the tablets, he was understanding. I told him that as I am on medication we must use a condom. He understood but it was just for the first year. The second year he said it could not happen that he could not sleep with me without using a condom. So I told him, no condom – no me. We started fighting because of that. I told him that I am doing great now that I am on medication. I told him that it won’t happen that I am on medication and you want to sleep with me without a condom. So we split’ (40-year-old woman). Adherence, as indicated by a decreasing viral load and an increasing CD4 count, with corresponding evidence from pill-counts, lack of re-infection and avoidance of pregnancy as evidence of consistent condom use were some of the conditions for retention in antiretroviral clinical trials.7 In general, men do not take as many opportunities as women in keeping up with HIV/AIDS-related information. Men may also resent the initiative taken by women who suggest changes in the nature of the relationship. The disproportionate involvement of women in HIV/AIDS-related issues places unfair pressure on them to ensure positive living with HIV/AIDS. The extract below highlights the important point that health-seeking-behaviour is gendered: ‘…men when they have a headache they buy grandpa [aspirin] and drink it and tell themselves that, no, I will be OK’ (29-year-old female).

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Women may seek medical help for ailments that men consider minor and treat with over-the-counter medication. One reason for this is that health facilities may be more accommodating for women than for men. For instance, women find ways to pass time while in a long queue to consult the doctor by socialising and exchanging pleasantries with each other. Men, on the other hand, might feel alienated by the clinic environment and would wait until they are really sick before seeking help in such settings. Men also have more access to job opportunities and might opt to use private doctors who do not offer as comprehensive an HIV/AIDS service as public clinics do. This is especially the case with support — in the private clinic the individual is isolated as privacy is a major consideration.

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Conclusions Ethnographic research such as this has the potential to highlight aspects of everyday living that bear on healthrelated behaviour. While unable to draw conclusive statements that are representative of the broader community, such research is better positioned to paint a nuanced picture of phenomena as they relate to their particular context. This research has explored and shown a complex relationship between disclosure and adherence to antiretroviral therapy. People on antiretroviral treatment (ART) have had to find ways to be adherent irrespective of whether they had disclosed or not to people with whom they share a living space. Although some participants were not under pressure to disclose their medication to members of their households, because of the nature of the household, others have had to find ways to remain adherent in less than favourable conditions. The lengths that participants often went to indicated underlying problems such as fear of stigmatisation and discrimination. While social support is necessary for individuals on ART to be adherent, personal factors, lifestyle, treatment literacy, and the impact of treatment on the quality of life were also shown to be as important in this regard. Some participants were prompted to disclose their HIV-positive status, and thus their medication, by the increased publicity given to ART in the mass media. We have also argued that adherence is not a discrete event, but rather a process that is open to outside influences. From this point of view, ongoing support integrated into clinical care is recommended. Participants indicated that they had to make far-reaching lifestyle changes to remain adherent. They had to make decisions to stop or decrease use of alcohol, change friends and partners, make adaptations that reminded them to take their medication, and sometimes had to curtail their movement to avoid the need to explain the medication. Antiretroviral therapy gave new hope, although it was sometimes thought of as cumbersome. However, the improved quality of life and the hope that a cure would be found in their lifetime kept people going. Participants indicated that with time and after a lot of challenges, they were able to assimilate the routine required by ART into their daily repertoire. However, some participants reported lapses in taking ARVs as required. These lapses have been attributed to increased casualness about taking medication when

Skhosana, Struthers, Gray and McIntyre

trial-related monitoring is slackened and no immediate adverse reactions are experienced. This research also highlighted the need for a new ethos in the relationship between the healthcare worker and the client. The active involvement of clients in their care not only improves motivation to comply with responsible clinical behaviour, it also lessens the load on the healthcare worker. Communication between the healthcare worker and the client, as partners, is essential to adherence. The need for straightforward, unambiguous and ongoing education was highlighted. Adherence counselling goes a long way towards addressing some of the problems raised by insufficient understanding of ART. Finally, we also highlighted the differential gender patterns of self-care and the need to involve men in HIV/AIDS management programmes. While the male participants were mute on this issue, insights from the female participants shed some light on it. Adherence to ART on its own cannot improve the quality of health of individuals on therapy; lifestyle changes such as consistent use of condoms to avoid re-infection are also necessary. These need the cooperation of men. Thus, there is a need to further understand some of the causes for the reluctance of men to participate in HIV/AIDS management programmes. Notes 1

2

3

4

5

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It is beyond the scope of this paper to give a full and comprehensive gender analysis. Our interest is to show the vulnerability of women which, on the other hand, increases the vulnerability of men to HIV infection. ‘Courtesy stigma’ refers to being discriminated against because of some association with the primary target of the stigmatising attitude. In a fascinating unpublished article that looks at infant feeding practices in Soweto in the era of HIV/AIDS, Radebe (2004) argues that disclosure of one’s HIV status is not necessarily verbal. Referring to infant feeding choices made by women living with HIV/AIDS, Radebe posits that there are culturally appropriate and implicitly agreed ways of communicating one’s HIV status in Soweto. These may be subtle and therefore lost to an outsider who is not privy to these dynamics. Radebe notes that non-verbal articulation of one’s HIV status and subsequent understanding thereof by those for whom the message is meant is especially present in a generalised epidemic such as we have in Soweto, where there is increased vigilance in discovering people’s HIV status. In this case, a person’s actions speak louder than words. This paper, however, refers to conventional, verbal disclosure of one’s HIV status. Disclosing to mothers was seen as necessary, as they were most likely to become one’s own caregiver should the need arise. Moreover, mothers were deemed sympathetic and understanding and thus people who would offer the necessary support. However, those who had elderly mothers or whose mothers were sickly chose not to disclose to them, to protect them. Similar findings were reported from a study conducted in KwaZulu-Natal, South Africa, by Lindegger, Solomon & Meyer (2004). ‘It has been suggested that stigma is applied with varying degrees of force, depending on local moral judgements about how a PWA contracted HIV’ (Siyamkela, 2003, p. 3). I have argued elsewhere that levels of stigma and discrimination have to change as new and informed ways of conceptualising the condition take root in communities (Skhosana, 2001).

African Journal of AIDS Research 2006, 5(1): 17–26

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For this reason, we surmise that being on antiretroviral treatment does not necessarily encourage sexual disinhibition.

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Acknowledgements — We thank Jane Munyoro who helped to collect data for this study, and Sue Krige, Tim Lane, Pierre Brouard and Karen Lazar for their comments on earlier drafts. We gratefully acknowledge clinic staff at Right to Care for their assistance in recruiting participants. This paper would not have been possible without the participation of clients from the Perinatal HIV Research Unit and Right to Care from whose experiences we have learnt so much. The authors — Nokuthula L Skhosana currently works as a social science researcher in the Perinatal HIV Research Unit at Chris Hani Baragwanath Hospital, Johannesburg. She is trained in anthropology and currently working towards a doctorate. She was an Associate Lecturer in the Department of Anthropology, University of the Witwatersrand, for two years. Her special interests are women’s sexuality and health, with a particular focus on issues relating to HIV/AIDS, especially the changing nature of stigma. Some of her ethnographic work was carried out in the rural village of eDwaleni, Mpumalanga. Her recent projects include exploring how the HIV/AIDS epidemic impacts on the meaning of death and dying among Sowetans. She has also worked on a regional project that explored infant feeding practices in an era of AIDS and how to best prevent mother-to-child transmission of HIV through this mode. Helen Struthers obtained an MSc in applied mathematics and worked for many years in mineral exploration. After leaving the mining industry she became an independent consultant while completing an MBA. Ms Struthers has consulted in a broad range of sectors, including mining, health, financial services and social sciences. In May 2002 she became Programme Director at the Perinatal HIV Research Unit at Chris Hani Baragwanath Hospital. She is actively involved in building a research team that will focus on the social science aspects of the epidemic. Her experience includes a study on household vulnerability in Soweto, anthropological research into male sexuality, psychosocial support models for settings in developing country, a study on adherence and compliance during long-term drug therapy, and a wellness programme for the prevention and treatment of opportunistic infections in HIV-positive people in Soweto and Limpopo Province. Glenda E Gray is Co-Director of the Perinatal HIV Research Unit at Chris Hani Baragwanath Hospital. Dr Gray is also an Honorary Lecturer in the Department of Paediatrics, University of the Witwatersrand. She is widely published in the areas of prevention of mother-to-child transmission, antiretroviral therapy, paediatric AIDS, clinical trials in South Africa, and gender-based violence. She has won numerous awards and honours, including the Nelson Mandela Health and Human Rights Award in 2002 and Top Female in Academia in 2004. James A McIntyre is a Senior Specialist at Chris Hani Baragwanath Hospital and Associate Professor in the Department of Obstetrics and Gynaecology, University of the Witwatersrand. Prof. McIntyre is also the Director of the Perinatal HIV Research Unit and Co-Director of the Reproductive Health Research Unit, both at Baragwanath Hospital. He has been principal investigator for numerous studies in the fields of HIV/AIDS and reproductive health. He has been a member of a number of committees, including ones with WHO, UNAIDS and the National AIDS Convention (NAC).

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HIV disclosure and other factors that impact on adherence to antiretroviral therapy: the case of Soweto, South Africa.

Some authors argue that there are no predictors of adherence to medication, while others proffer indicators of likely adherence. These contextual fact...
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