Whilst we did not interview men who had failed to take up services ourselves, our data set included a lot of talk about men and services and a general consensus, echoing findings from elsewhere in sub-Saharan Africa, that fewer men than women made use of HIV services and often only when seriously ill.
"Even in our cohorts, we have very few men. We can initiate a cohort of 30 patients, you will find only one male and the other 29 will be women." Claudius, nurse
Our informants' accounts of men's journey from realising they may have HIV and fearing the consequences of it, to having come to terms with their status and enrolled onto an ART programme, converged on a small number of common themes which are detailed in our thematic analysis.
Social constructions of masculinity
A clear representation of hegemonic masculinity dominated people's accounts of their social reality and their explanations of why men did not take advantage of HIV services. Whilst it was clear that not all men subscribed to this notion of hegemonic masculinity, and others had managed to resist it in making the decision to be tested and treated, it served as a very clear and identifiable reference point in all the interviews. People engaged in constant debate with this notion of masculinity, taking up different positions in relation to it, but always using it as a yardstick against which they defined themselves.
Characteristics of 'a real man'
Men's experiences of self and other were constructed around their accounts of those 'manly' characteristics which distinguished them as superior from their 'weaker' female counterpart. Men perceived themselves as physically strong, tough, resilient, problem solvers and capable of withstanding 'little illnesses'.
"Men are just stronger in terms of resilience... as men, we have been given toughness such that we can pull through even the most difficult situation." James, patient
Women spoke of men differently and often with an awareness of the kind of pressure men were under to be 'a real man'. As Marta, a nurse, also points out, men do not want to show fear. Men are not supposed to show emotion or anxiety about their own welfare. On the contrary, showing they do not care is an essential way in which they 'perform' or construct themselves as men.
"Men, as I see them, don't want to know about their status when they are fit and strong, they do not want to appear afraid I think. Not wanting to know what their status is, is like saying 'I'm strong I'm strong'." Marta, nurse
Charles comments that such expectations make it particularly hard to be a man.
"I feel being a man is really hard in this community. Once you finish school, parents will not help with anything if you are a man. It is different with ladies who still receive the support of the family even when they finish school. Men are expected to be hard enough and strong enough to look after themselves. So I feel the community expect a lot of toughness from us men." Charles, patient
Charles, a man who had managed to access and benefit from services, shows some insight into the socially constructed nature of masculinity in this context. In our study, in accounting for their own acceptance of their HIV status and need for help, male patients often described themselves as different from other men in this regard.
Men's roles and responsibilities
Being 'a real man' translated into many roles and responsibilities. Men, for example, were perceived as household providers and the ones to carry out responsibilities requiring physical strength, whilst women do household duties such as cooking, cleaning and caring for children.
"In terms of household chores, men are supposed to do all the manly duties like looking after livestock and doing most of the farming, while women concentrate with things like fetching water, washing and cooking for the whole family. In this community it is generally men who are supposed to make sure they provide the financial needs of the family, so this includes paying school fees for children." Emmanuel, patient
Such perceptions pressure men into believing that those who cannot fulfill their roles and responsibilities as breadwinners and heads-of-house are not 'real' men, fathers or husbands. It is precisely such perceptions that add to the stress of manhood, making it difficult for men to behave in counter-stereotypical ways. However, as Charles indicated earlier, male ART patients who have come to terms with their HIV status and the physical limitations that come with the disease, adopt a different and more reflective masculinity. Carl, another patient who has constructed a non-hegemonic account of his own masculinity, indicates that, in this family, his AIDS has encouraged them to adopt more fluid gender roles and he gladly engages in cooking and child minding.
"People say that cooking and child care are duties of the wife and any man who does such kind of duties is either bewitched by the wife or is just weak (he laughs). But I don't see anything wrong in cooking and looking after the children when I am at home. Doing such chores can help me because, if my wife falls ill, I will be able to cook for her and the children. I just feel I should be prepared for such kind of situations." Carl, patient
Sexuality and manhood
Whilst a few men, particularly HIV positive men on ART, managed to renegotiate their masculinity in ways that enabled them to access services, men were generally portrayed as engaging in activities that demonstrated their sexuality and manhood. Men were perceived to be 'sexually unstoppable' and whilst men generally needed to appear in control, this was one area where men could admit to being out of control, a 'weakness' leading men to spend considerable time and money in beer halls.
"After getting drunk, some men lose control and end up fondling any woman they come across, that is a weakness of men. Also, men can easily spend all their earnings on alcohol." Godfrey, patient
Unlike women, it was considered normative for men to have extra-marital relationships. Often these required some level of maintenance, taking much needed money away their wives and children. One patient (Samson) said wives were so used to their husbands' infidelities that they readily forgave them for it.
"Men have this weakness of having extra-marital affairs if they are married, or just having more than one girlfriend. It's unfortunate that women have kind of accepted this weakness of men. So much that, if their husbands do that, they are ready to just forgive him and move on with life." Samson, patient
What Samson's quote underlines is an intrinsic acceptance of local constructions of men's sexuality. Men's need to assert their sexuality and manhood is seen as a 'matter of fact'. Not only does this representation serve to justify men's extra-marital affairs, but it also puts tremendous pressure on men to perform and demonstrate their sexuality/manhood. Men's sexuality, roles and responsibilities are under threat by HIV/AIDS, and the reactions of many men, as the next section will show, serve as barriers to men's uptake of HIV services.
Barriers to men's HIV services uptake
Men's fear of HIV
Many of our research informants spoke of men having a profound fear of HIV, preventing them from timely HIV testing and treatment.
"Men are generally afraid to be known that they are HIV positive. They are shy and they may only come out after they get seriously ill. Some men are afraid that people in the community will laugh at them or look down upon them for being HIV positive." Johnson, patient
Being HIV positive not only compromises a man's sense of masculinity, it is also a sign of a man being unable to control his sexuality. Whilst having multiple sexual partners is a sign of virility, many men reported feeling embarrassed from failing to protect themselves. Fearing they will lose their dignity if found to be HIV positive, many men opt to ignore HIV services, or if they have been tested, hide their status from their wives and do not seek treatment.
"Sometimes they will not even tell the truth to the nurses fearing that everyone might know that they contracted an STD from their sleeping around. I think this is especially true for men. Some men are getting to the extent of dying with these STDs without seeking treatment, they even hide such illnesses to their wives." Spencer, patient
Although it may be counterintuitive for men to report feeling guilty and embarrassed about their extra-marital affairs when having multiple girlfriends is one way to demonstrate their masculinity, it appears that a healthy sexuality is intrinsically linked to a hegemonic masculine sexuality. A man who engages in extra-marital sexual relationships and gets an embarrassing disease like HIV is perceived to have a weak, diseased, compromised, laughable and despicable sexuality - compromising his manhood. Relatedly, admitting to such a tainted sexuality may compromise a man's relationship with his wife. A number of men feared being left alone should their wives learn that they are HIV positive. Also young men feared that their tainted sexuality would limit their chances of being with women and eventually finding a woman who would take of them.
"For the young men who are still single, they also think about whether they would still be able to get married as they fear that their girlfriends may just shun them if they test HIV positive." Sunny, patient
Delusion, denial and diversion
Men like to see themselves as all-knowing and dominant. To admit there is something they do not know may imply lack of power and will put them in the position of a 'learner', a subservient and unmanly trait. Grounded in a fear of HIV, many men therefore appear to be in denial regarding the seriousness of HIV and AIDS - preventing them from accessing HIV preventative information and from seeking HIV services. As Spencer suggests, men will actively avoid spaces where AIDS is being discussed.
"I think the reason that is there is men who don't want to come out in the open, they want to hide and they don't have the knowledge. If they hear of a place where AIDS is being discussed, they don't want to go to that place, so men do not have that much knowledge." Spencer, patient
This, coupled with a demonstration of macho fatalistic risk taking and holding on to very rigid, inflexible and insecure positions, means many men continue to be at risk of HIV.
"Men are dying and they don't want to be tested. You hear them saying HIV is like an accident and people cannot stop driving because of accidents, so some men will not change their behavior." Stuart, patient
Men tell themselves many things to justify their behaviours. For example, some see HIV as a disease that only exceptionally promiscuous men will contract and therefore not at risk themselves. Illustrating the deep denial of HIV in many men, Godfrey describes the different ways in which he sought to deny that he had contracted HIV.
"I did my own inventory of the women I had had sex with, and I could not even single out one of them as potentially the one who gave me the infection. I really did not believe it. Then I used to feel that I was just unlucky because I knew men who were doing worse things but still going on fit. I got to the extent of even questioning the existence of HIV/AIDS because I thought, if it really existed, why were some very promiscuous men escaping the infection. I also thought even that machine that was used for my HIV tests could have been defective." Godfrey, patient
Whilst Godfrey blamed the HIV testing procedure in his attempt to avoid the reality of AIDS, other men resorted to drinking alcohol. Not only did this contribute to the continued spread of HIV, but also the avoidance of HIV testing and ARV adherence.
"Some men will drink so much that they forget to take their drugs, and even forget that they are patients on ART." Carl, patient
In an attempt to save some dignity, men were reported to blame their wives for bringing HIV into the family. Whilst no men admitted to blaming their wives, this was commonly reported by nurses and female patients.
"Men are stubborn sometimes. They blame the wives for bringing the disease into the home in an attempt to preserve their role as head of household." Bridget, patient
Masculinity conflicts with 'patient persona'
Many men were also alarmed by what it means to be an HIV patient. Not only would men have to admit they were ill and own up to their physical limitations, they would also need to enter female spaces and act in ways that conflicted with hegemonic notions of masculinity. To be enrolled onto ART in this context, patients must attend monthly consultations at a hospital. However, due to women's participation in maternal, infant and child health and related visits to the hospital, hospitals are perceived by many men as female spaces, discouraging them from engaging with HIV services in a hospital setting.
"Men view health issues as female issues. Women always go to the hospital from pregnancy and until the children are grown up. So men feel hospitals and health concerns are for women." Michael, patient
Aside from hospitals being perceived as female spaces, there are numerous potential elements of a hospital visit that conflict with masculinity. One challenge that was frequently referred to relates to men's difficulties in showing up for appointments with health staff.
"When you give them the review dates that you want to give him a counselling session, they do not turn up at the time you specify. They just come when they feel like it - on their own free will time. So men are very difficult to deal with." Claudius, nurse
Different reasons were given to why men struggle showing up for review dates. Men are expected to queue up patiently wait outside the HIV clinic. In doing so, a man will not only run the risk of being recognised as HIV positive, but will have to let go of any sense of control of his time and his freedom, having to follow instructions given to him in this biomedical setting and wait patiently like 'one of the women.'
"So men find it hard to just go to the clinic... you can imagine men waiting in these queues here, men do not have a lot of patience to wait in these queues but women are used to coming here and waiting in these queues. A man would really feel belittled to wait in these queues the whole day shoving and jostling with women." Emmanuel, patient
Some men explained that they cannot afford to wait a whole day to be seen by a nurse as this compromised their head-of-house duties. As part of their monthly consultations, ART patients must adhere to a complex and strict treatment regimen where pills must be taken timeously and where certain activities are strongly discouraged. A number of men explained that their work activities made it difficult for them to carry around their medicine and to take it in a timely manner. Furthermore, ART patients are advised to eat healthily, apply creams to sores, quickly respond to potential opportunistic infections, refrain from unprotected sex, smoking and drinking alcohol. These, and many other instructions worry men to such an extent that some fear enrolling onto ART.
"I think some men know that what they are doing is not good for their health, so they fear the nurses advising them to stop a lot of their activities including drinking alcohol." Daya (female), patient
As many men fail to abide by what is expected of an ART patient, at least until they are more comfortable with their new identity as an ART user and have adopted a more ART-friendly masculinity, they are subject to reprimanding from nurses. The frustration experienced by some nurses as a result of men's inability to adhere to treatment results in nurses occasionally giving up on certain male patients as they repeatedly fail to act upon the advice given to them.
It is clear that men face numerous barriers in accessing HIV services. Grounded in a profound fear of HIV/AIDS as well as perceptions and experiences of HIV services, this section has highlighted some of the ways in which men avoid and delay HIV service use in order to protect or demonstrate their masculinity and dignity. With such strong barriers to HIV services, what opportunities are there for men to make use of HIV services?
Facilitators of men usage of HIV services
Our discussion above indicates that men face very specific challenges in accessing HIV services. However, in the case of our male informants who are now accessing and adhering to ART, it has been possible to overcome these obstacles and construct new masculine identities more in line with the 'patient persona'. In this section, we will highlight some of the pathways through which men can make use of HIV services.
Persuasion and need
As men fear the consequences of being HIV positive and how it may adversely impact their representation of their manhood, being persuaded to make use of HIV services from someone whom they trust often served as a strategy to give men the push they needed to make use of HIV services.
"My wife was worried and was always asking about my health. The swellings were not painful to me at all, so she was always asking what sort of disease it was. I told her I was fine but she insisted that I should go back to the hospital and show them those swellings. She would always push for me to go to hospital every day until I felt I should just go to the hospital to honour her wish." Emmanuel, patient
"Usually we will try all means to make the husband come. We sometimes send a message through village health workers or we send it through the husband's best friend to go and talk to him." Claudius, nurse
But not all men could be persuaded and many only got access to HIV services when they were too sick to move and assert their masculinity and ended being brought to the hospital in wheelbarrows.
"Men will only come to us when they are bedridden and brought to us in a wheelbarrow." Collin, nurse
This was the single most frequently mentioned route through which men arrived at hospital and were initiated onto ART. Many of our male participants, who are now living positively and on ART, admitted to also being brought to the hospital in wheel barrows after continuously denying their illness. Having said this, other facilitators of men's HIV service usage were identified and study participants provided us with pointers as to how HIV services and the local environment can help men overcome gender-related obstacles.
Gender sensitive HIV management services
Much of what we have discussed so far suggests that the need for gender sensitive HIV services. Men require counselling that challenges the versions of masculinity that prevent them from living positively and on ART. Although these groups were open to both women as well as men, rather than men-only spaces as is the case in other settings [e.g. ] our interviews suggested that counselling was often key to helping our male (patient) participants come to terms with their HIV status, demystifying inaccurate perceptions and helping men to step away from hegemonic notions of masculinity - in favour of revised identities that placed key emphasis on previously less important roles, such as being a family man or playing an active role in encouraging other men to make use of available HIV services in a caring and supportive way.
"To be honest with you that counseling opened my eyes to the fact that my HIV status will not necessarily affect my role in the family, rather my family now understands me better. But initially that feeling of being reduced to an HIV sufferer who is good for nothing gripped me, but now I am doing well." Emmanuel, patient
The health clinics in our study area group ART users together into (again mixed gender) support groups to facilitate ART adherence. In the support groups, ART users can negotiate and renegotiate identities that help them both navigate through local struggles and meet the expectations of a 'patient persona'. As outlined by one male patient (Stephen), the support groups allow men to come to terms with their status through acceptance and support from other members as well as access food aid.
"Now we have these support groups that are well known to be a platform for HIV/AIDS sufferers to give each other support; it was never like that before. In the past, nobody would really want to be associated with such a disease, a lot of people now want to get tested so that they can also get some food which is sometimes given to people living with HIV/AIDS." Stephen, patient
It appears that food aid, distributed through support groups for ART users, is highly beneficial to men as it allows men to reconcile the 'patient persona' with their local obligation as breadwinners. This is illustrated by the dramatic increase of men actively seeking HIV testing in the hope that they may be positive and qualify for food aid.
"I had never seen a man coming to be tested when they could still walk until recently when Africare [NGO providing food aid for ART users] came. Now we are seeing more men coming for tests." Lydia, nurse
This sub-section has given a few examples of how HIV services interact with masculinities and provide a platform for men to construct new and more ART-friendly masculinities.
Constructing responsible masculinities
In order for men to cope with the stresses of HIV and to make use of HIV services, they often have to undergo a remarkable transformation, breaking free from socialised norms of what it means to be a 'real man' and to live by revised or renewed versions of 'manhood'. This can take a while and many men fail to adhere to ART as they continue to abide to the traits of hegemonic masculinities. However, with time and through self-reflection, as well as the kind of support discussed above, some men are able to construct a new set of representations, another version of masculinity, integrating key traits of hegemonic masculinities with their life circumstances (being HIV positive and on ART). One dominant representation that male patients appeared to adopt is that of being a responsible and valuable citizen. They are socially responsible because they took the difficult step to get tested, have gained a lot of knowledge (through counselling and peer support groups) about HIV/AIDS management and now pass this on to the fearful 'ignorant other.'
"So I have learnt a lot from going to counseling, and now I even encourage fellow men to consider getting tested rather than them suffering in silence, fearing that they may be told that they are HIV positive." Emmanuel, patient
Furthermore, in lieu of representations of AIDS-affected people as unproductive and a burden, unable to care for their families, many of our male informants spoke about how being on ART had enabled them to participate in productive activities and contribute to the long-term of their family, highlighting their social value.
"What makes me look forward to the future is my health which is in a good condition. Also my family. I look forward to building a good future with my family." Nick, patient
Men often spoke about their role in the family and how ART had enabled them to live up this role. In constructing socially responsible masculinities, men also explained how they had stopped drinking alcohol or were no longer engaging in extra-marital affairs - emphasising their family role.
"I have also stopped drinking so that I can concentrate on my treatment [...] I take this programme seriously because my family depends on it." Charles, patient
Their sense of having some kind of control over their health and still being able to fulfil some of the key traits of being a 'real man' has also been a building block for men to resist derogatory stereotypes from their peers. Seeing themselves as responsible and informed and their peers as fearful and 'ignorant', male ART users are able to create a distance from otherwise hurtful attitudes and actions.
"They also use derogatory names and they do it openly, I think they have not yet understood the importance of treating an HIV sufferer as a normal human being. Maybe they don't know that we are just the same." Johnson, patient
This section has outlined some of the opportunities that exist in this context in facilitating men's use of HIV services. Men drew on the facilitators in different ways and at different stages, highlighting the complex transformation process, which many men will have to endure in order to make use of HIV services.