Vanja Kovaĉiĉ and Joan Amondi

1. INTRODUCTION

This paper is based on experience gained while conducting an anthropological study for Médecins Sans Frontières-France (MSF-F) in western Kenya’s Homa Bay. The Homa Bay area, extending along Lake Victoria, has one of the highest prevalence rates of HIV/AIDS in the country. Active in the area since 1996, MSF initiated a programme in 2001 to deliver free Anti-Retroviral Therapy (ART) in a public health facility. Since then, MSF and the Ministry of Health (MoH) have enrolled more than 17,000 patients in the HIV/AIDS control programme organised at the district hospital and other decentralised sites.

Observing the barriers that local communities face in accessing care, the authors were entrusted with the task of exploring these issues and developing strategic recommendations for future projects. Our distinctive position as researchers and outsiders brought us close to the communities and their personal stories of living with HIV/AIDS. The objective of this paper is not to write about the daily struggles of patients, nor to reflect on the insufficiency or unavailability of quality care but rather to reflect upon the microcosms within the macrocosms, on agency and tactics that help people to cope not only with the disease, but also with their dependence on medical institutions.

2. A FINE BALANCE?

Visiting patients in their homes allowed us to hear many different stories. A common and surprising trend we saw was that, while patients feel assisted by healthcare providers in terms of access to treatment, they also feel limited when it comes to making decisions about their own lives. This was to some extent corroborated by health workers who, when I talked with them, said that HIV-positive patients are perceived as passive recipients of the programme who should question neither the benefits of treatment nor the medical recommendations. For the patients, however, treatments and their accompanying side effects and rigid medical recommendations often clash with the social reality of their everyday lives and pose some of the most severe challenges.

It is important to remember that as soon as people learn that they are HIV positive, not only do they embark on a life-long dependency on health facilities, but they are also subjected to an invasion of privacy that, to the best of our knowledge, does not occur to such an extent in the treatment of any other disease. Let us review the phrases used regularly in therapeutic education sessions: “prompt and constant consumption of drugs”, “balanced diet”, “working moderately”, “disclosing HIV-positive status to partner(s)”, “using family planning” and “practicing safe sex”. What then is left to patients to make decisions about? Their compliance with these recommendations is monitored constantly and if they fail to do so, they are pressed into additional therapeutic education sessions to “change their behaviour” and act in accordance with the expectations of the health facilities. So, ultimately it is up to the healthcare providers to judge what is good and what is bad, who will live and who will not - a chilling reality often present in the minds of patients.

The efforts of the public health services to check the spread of HIV, especially in already ravaged communities such as Homa Bay, are indisputable. And it is also indisputable that the main focus of the healthcare providers is to improve and maintain the physical health of their patients. However, other aspects of healthcare are not taken into account in this approach, such as patients’ emotional and social well-being. HIV-positive individuals now have long-term aspirations and these involve other people. Therefore, understanding and working with their social networks is crucial as this is one of the main coping strategies for people living with HIV/AIDS. Striking a balance between the demands of care workers and the expectations and personal and social space of patients is the subject of ongoing negotiation.

SOCIAL NAVIGATION

Such negotiations have led patients to develop numerous innovative strategies we call “social navigation”. We use this term to refer to the tactics that patients have developed to navigate between adhering to medical recommendations, with as little risk as possible to their lives and related responsibilities (preserving respect and social status, providing financial support to their families, safeguarding their marital relationships from conflict, etc).

My research focused primarily on health seeking behaviours. Therefore, mention of issues of social navigation in interviews was muted. The quotes I present in this paper often provide an indirect insight into the context, and therefore should be read with an open mind. Yet, the examples below demonstrate the need for a broader approach in the way we envisage HIV/AIDS programmes. Needless to say, there is immense potential for further exploration of this topic and the results of such an exploration would provide us with a greater understanding of the realities of people’s lives.

ADHERENCE

Taking a drug everyday, twice a day, at exactly the same time, without fail, for the rest of your life; no need to be an expert in behavioural sciences to understand that this is an unrealistic expectation. Adherence to prescriptions was an issue that came up during my interviews, most often in a hesitant, painful tone. Most of the people I interviewed were terrified of being labelled “defaulters” (people who refuse to take drugs either partially or completely). Their observations that “defaulters” ended up dying “before their time” were embedded to such an extent that they were reluctant to even start treatment. Not surprisingly, this fear was also associated with the notion that the health facilities might refuse to provide ARVs to “defaulters”.

As per medical protocol, as soon as an individual is diagnosed as HIV-positive, prophylactic treatment should be started. However, many of my interviewees “administered” to themselves for some time before they felt ready to start treatment. This decision, taken in order to avoid becoming “defaulters”, gave them the time and the space to accept the overwhelming news of the test result, which led them to re-think their options in life. During this period of “acceptance”, they often return to the health facility and get re-tested, making out it was their first test. This is triggered by a worsening of their symptoms or simply because they wish to get confirmation of their HIV-positive status as they are still dealing with intense feelings of denial. The period between the first test and starting treatment sometimes takes years, as demonstrated by the example of a young lady I talked to, who had waited five years. She described her experience:

I have been tested three times (…). I had three (registration) cards, but I used to throw them away. (...). And earlier when I went for the test, I didn’t start treatment right away (...). Because I know somebody should not default. I saw somebody the other side (of the river). She was admitted and than she was given drugs, but she hid them. She didn’t take the drugs; and that lady has been already buried, she is already dead. And the second case of somebody defaulting (I know), he was almost dying; but they have started giving him drugs again (...). At first (testing) I was given the yellow card; I remember I was told by the counsellor, not to be worried or stressed even if I was found with it (HIV). And I was asked what will I do (if positive), and I was told (by the counsellor) whatever the results, she would like me to like my work and not to be stressed. And to eat well. So what I did was buy juice, the commercial one. And all the time there was fruit in the house and I would eat (it). But all this time, (I took) no treatment, no drugs. Than I threw the yellow card away. The second time it was also like that… I threw it in the river. And than I decided… I was getting sick, but I would just buy some drugs at the junction here, or somebody would send me some drugs, like malaria, which would be like 170 (shillings)… And than I got sick again… I had joint pains, and I used two blankets to cover myself and it went on just like that. Until the last one (time when sick) when a friend came (to visit) and told me- now you need to go (to get treatment) (HIV-positive woman, Homa Bay, 9/8/2010).

AFFORDABILITY

Eating a “balanced diet” and “working moderately” also cause much pessimism and pondering within the community. The notion of “balanced diet”, evoking perhaps the time when this was almost the only area patients could influence to try to prolong their lives, was interpreted as eating expensive food such as meat and fruit unavailable locally. Increased spending on food along with “moderate working” in the context of the fight for survival, were described as a threat to the existence of the community and were openly opposed:

Where we normally go for medication they tell us that we need to eat a balanced diet, we need to work in a temperate manner, not over-stretch; when we get such (information) some people get frustrated: how shall I survive? Now this may make us feel that in few years (from) now our community may be swept (away) (HIV-positive man, Homa Bay, 12/8/2010).

SEX AND PARTNER INTIMACY

Presuming there is no need for discretion in discussing intimate issues, the patient’s sex life is talked about openly during therapeutic education sessions: with whom, how and how often (the latter regulated by the number of condoms received during the previous visit). The interviewees often stated that they would take condoms from health workers to avoid further discussion and claim they used them just to ensure the “right” box on the form was ticked. However, they would never consider actually using them. In the Homa Bay community, condoms are closely associated with HIV infection. So practicing “safe sex” is inseparable from unwanted disclosure. Lubricant is also believed to cause infertility and pain in the lower abdomen. And sometimes using condoms is quite simply not an option, because the patient has decided to have children.

DISCLOSURE

The biggest problem by far is the assumption that HIV-positive individuals are willing and or able to disclose their HIV-positive status to their partners. The risks associated with disclosure are considerable and often unpredictable and can lead to verbal and physical abuse, neglect, withdrawal of financial support, and desertion. One of the interviewees reflected on the complicated nature of talking to his partner:

“Maybe you are not with your wife (but with somebody else). She doesn’t know where you are going, where are you walking… You don’t discuss... It is difficult to come to her and explain! How do you start? Maybe you were walking badly (misbehaving)... How do you start? (HIV-positive man, Homa Bay, 21/7/2010).

Many of the interviewees did not disclose their HIV positive-status to anyone, including their partners or spouses. Those who did disclose often used a variety of communication strategies that helped them reduce the aforementioned risks. Male interviewees in particular reported that they did not leave any room for discussion with their wives, but used more indirect strategies. They often left their health facility registration card (with the HIV-positive option ticked) in the house or in their clothes on purpose so that their wives would find it when going about household chores like cleaning and washing.

Interviewees from polygamous marriages have more options for social navigation since they can choose to disclose their positive status to just one wife. This removes the pressure from the healthcare providers: (“Yes, I told my partner”) and gives them room to manoeuvre regarding their marital affairs. This is the testimony of one of the interviewees who was open with his elder wife about his extramarital partners and HIV infection, but not with the younger one:

“I told the elder wife (about my status), because I had told her earlier “you know that I may bring you this disease (HIV)”! And she is here (in the house) for so long, she cannot run away from home. But if I tell the younger one there is a possibility that she will go away” (HIV positive man, 16/7/2010; Homa Bay).

The same person also suggested a solution to the care workers to enable them to provide the appropriate conditions that would facilitate compliance with the medical recommendations, i.e. full disclosure and use of condoms:

“I have been waiting for these people from the mobile VCT to come, and they ought to come. If they come I will say to my (younger) wife - there is a mobile VCT, go and get tested! So that is what I am voting for… The best way that people could be helped is if you could organize a mobile VCT in a church or a school. You see, the elder wife knows, but the younger one doesn’t know about my status. So with the mobile VCT she would know! I cannot break the news to her because she would suspect (that) I am the one who infected her. So then my wife would know her status, I would say - let’s now just start treatment and use preventive methods; let’s just protect all three of us. And then I could use the condom the way I was taught”. (HIV-positive man, Homa Bay, 16/7/2010).

DISTORTING TRANSMISSION KNOWLEDGE

After years of providing information to patients about HIV/AIDS, it is generally believed that the community uses medically-correct terms when discussing related issues. Despite sound knowledge regarding disease transmission, members of the community sometimes choose to attribute their illness to other infectious agents, a decision that helps them avoid conflict within their family. One of my interviewees, a young girl married to a much older man, was quite open about her extramarital partner. She assumed that he was the source of her HIV infection, but was reluctant to discuss it with her husband. When she saw that her husband was falling ill, she chose the following strategy to encourage him to get tested:

“The period when I kept quiet (did not disclose) was maybe five years. When I was tested I didn’t tell my husband directly. And when I came (home) with the Plumpy’nut my husband asked (me)- what are those things? And I said - you see, when I went to the supermarket I was getting all these things… And I took these snacks. And even my husband ate it (Plumpy’nut) with me, because I couldn’t say it was a medicine. I lied like that… The second time, I was sick again. And I lied that I had a growth in my stomach and that I needed an operation. The third time, I saw that the husband was also getting sick. Than I decided - now it is the time to reveal (the truth). First I told my husband - now, you need to go for a test, an HIV test. And my husband said, “No, I cannot go for an HIV test. You see, I am old… There is no way I would get it (HIV)!” But the husband was getting sick, and I was getting stronger. So I was thinking -I cannot lie to my husband! I need to find a way to tell him (about my status) and ask him to go for the test. So I told him these days, you see, these things (HIV) are not only transmitted through sex… Now you are saying, you are old... It is also transmitted through mosquitoes. Do you remember your son (co-wife’s son) was sick? So, the mosquitoes could have sucked his blood and than sucked your blood. Now, this is a major disease. Even mosquitoes have it! So the husband agreed to go for the test (HIV-positive woman, Homa Bay, 9/8/2010).

3. CLOSING REMARKS

These examples are by no means unusual. The patients’ experiences illustrate that social navigation is an extremely powerful tool. It is obvious that patients do not only question the advice given to them at health facilities but, regardless of being labelled as uncooperative, they also choose for themselves what they want to put into practice (what is “good” for them). This can be interpreted as undermining the supreme authority of Western medicine, or, serve as a reminder that sometimes it is difficult to decide what is the best solution for an individual, despite the scientific and medical evidence.

It is abundantly clear that the further away medical recommendations are from what is feasible for patients, the greater the non-compliance. In other words, what is the point of having stringent recommendations that nobody adheres to? There is most definitely a need to develop patient-centred care, a holistic approach that considers a patient not only as a person but also as a social being. However, it will be hard to develop care driven by patient needs if the patients themselves are absent from the negotiating table. But that is another question altogether… isn’t it?