In the discussions on constraints to adherence, the study identified six interrelated themes. These are presented below, without any order of priority.
5.1.1 Gender and non-acceptance of HIV status
Gender was identified as being strongly associated with acceptance of HIV status. Respondents stated that women talk about HIV and test early, and so are more likely to accept their status than men. Men were said to avoid testing for HIV. But when their partners test first, they often blame them for bringing the virus. As a result, men can become angry and violent and tell the partner not to bring the medication into the ('his') home. In Maun, there were stories of women who were hiding their ARVs in a neighbour's house for fear that their husband would discover that they were still taking the pills. This interfered with adherence in that most of the time these women would be dependent on their neighbour's schedule for access to their medication. Women were also reported to avoid telling their partners about their HIV-positive status in order to protect the relationship. This results in re-infection and in the hiding of medication.
Most respondents agreed that individual acceptance of positive HIV status is key to the behavioural changes that are required for a good health outcome. Non-acceptance of positive HIV status and of life-long dependency on ART for survival were perceived by many respondents as a major barrier to adherence. A female ARV user put it succinctly:
"In life people feel shy to tell other people about their status and that they are on ARVs. People do not advise them because they do not know they are on treatment. When one has a visitor, he/she will start skipping treatment. They end up dying because they fail to take the treatment."
When an ARV user is in a state of denial, it is difficult to disclose to others, medicines are hidden from friends and relatives, and when necessary they skip medication to ensure that friends and family do not discover that they are HIV-positive. A male ARV user explained:
"I usually miss my medications when I visit friends because I have not told them about my HIV and so I do not want them to see my medications."
Meanwhile, a female ARV user said:
"My boyfriend did not tell me his status and was against me going to test for HIV because I was pregnant. As a result he hid his ARVs from me. He kept all the other medications on the dressing table but one time when I was cleaning, I saw some bottles of medications hidden away. I wrote the names on the paper and went and asked the nurse about them. She told me they were ARVS. I went back and asked him why he did not tell me. I think he wanted me and the baby to die because he did not want us to get help by testing."
Many respondents thought that women were more likely to accept their HIV status than men and that women generally have better health-seeking behaviour than men. Some women consider the better health-seeking behaviour of women to be due to their desire to stay alive in order to care for their children and other loved ones, despite being blamed by men for the disease. Health care workers attributed the greater acceptance of positive HIV status by women and their better health-seeking behaviour to the fact that women have always been very close to the health care system through the maternal and child clinics.
One ARV user in a female FGD explained:
"Women accept their status easily; we chat and get encouragements from other people. We like to know our HIV status even while still young without having children; we would like to know so that we may help significant others."
Another female ARV user said:
"Men are stubborn. I had a partner and we had a child who later passed away. I tested and my husband accepted me but he refused to test himself. I wonder why he refused."
One of the men said:
"Men are brave, strong. We believe in our tradition/culture. It is not easy for us to go and consult the doctor. Men believe in herbs but the disease doesn't tolerate that."
Respondents generally agreed that acceptance of status could result in increased disclosure and possibly in improved adherence.
Non-disclosure was one of the themes that emerged as a barrier to adherence. Respondents stated that failure to tell someone (e.g. a friend or family member) could be due to reasons such as: fear of being discriminated against, stigma, job loss or abandonment. It was not uncommon to hear of people who were rejected by their partners because they had revealed their HIV status. This problem is highlighted by the following quotes from a FGD involving female ARV users:
"Those on treatment at times do not tell their partners."
"Some women hide their status fearing to be dumped by their partners after disclosing their HIV status."
"A man will leave you if you tell him."
Men, on the other hand, complained that women do not disclose their status in order to keep them in the relationship. One of them said:
"Those who get pregnant while on treatment might not have told their partner."
The male respondents also maintained that no man would refuse to use a condom if they knew that the woman was HIV-positive. Meanwhile, young adults who were in relationships also found it difficult to disclose their status, because they are tested independently and do not necessarily know the status of their partner. One ARV user explained:
"For us the unmarried youth, you will find that even when you know your status, it is not easy to disclose because you do not know your partner's status. You end up hiding medications because when you tell them, they disappear after a short period. We usually weigh the situation because we would not want our names to be defiled."
If one partner is on ART, they may resort to pill hiding, occasional skipping of medications and failing to keep clinic appointments for refills or review, so their partner does not find out that they are on ART.
5.1.3 Perceived lack of social support, fears about stigma and privacy concerns
Many participants discussed issues relating to lack of social support, fears about stigma and privacy concerns that acted as constraints to adherence. These issues are presented under the following three levels: individual, family/friends, and workplace.
Some respondents identified the personality traits of the individual as being important in determining how they perceive stigma, privacy issues, and the availability of social support. Lack of self-motivation was said to result in low adherence. People who lack self-motivation are less likely to disclose their status and therefore less likely to attract social support. And even where social support is available, there may be a tendency not to use it. This was supported by a female respondent who said:
"My younger brother who was on treatment refused to take his ARVs, and even to talk to the social workers visiting at home. He never did well and ultimately died."
Some respondents perceived the partial integration of ART with other health services as exposing them to the likelihood of being stigmatized, as one ARV user at a semi-integrated health care facility explained:
"We will like to have our own clinic instead of being mixed with these other people. They are always staring at us, especially when we come to this door (labelled "ARV Dispensary"). I like it at Princess Marina Hospital (in Gaborone) where ARV users are isolated from the rest of the people. Some people fail to come and refill here because they are shy to be seen by their friends."
Family social support and acceptance of a relative or friend living with HIV/AIDS, was found to depend on the nature of the existing bonds before the illness and how the individual has contributed to the relationship. A male ARV user said:
"If you don't have a partner you are in trouble. The partner can take care of you when you are sick. The parents may say you only know them when you are sick, you used to go around with other ladies when you were fit. They deny you and offer you negative support."
A female home-based care volunteer observed that:
"Some of the patients are suffering. There is one man who is suffering because his wife does not want to care for him. She does not cook for him and does not give him his medicines. We sometimes try to bring him food but when she sees us, she chases us away. The man is so thin."
Within the same family, some members may be more supportive than others, as a female ARV user explained:
"I get support from my sister and my children. My nieces, they are always laughing at me and telling people that I have the virus. They would not even give me my medications when I am too sick."
Most ARV users said they would not disclose their HIV status and the fact that they are on treatment to anyone if they believed it would result in stigmatization and a lack of support. Unresolved family conflicts may also result in lack of support. This was captured in the story of an ARV user, who said:
"My discrimination did not start with my HIV status but emanated from family conflict. I ended up moving out of the family home with my children. I continued to meet obligation to the family but when I got ill and was hospitalized, they never visited me. Currently my parents have passed away. However, if there is illness or death of one of our relatives I do assist."
The reaction of employers and employees towards HIV/AIDS in the work environment is a reflection of the attitude of the community and its culture. A supportive work environment creates a conducive atmosphere in which PLWHIV do not have to fear about stigma and discrimination.
Many of the respondents interviewed, especially those who worked as shop assistants, farm workers and for safari companies, cited non-release by employers as a barrier to adherence to treatment. Many of these workers said they could not even freely discuss the issue of their HIV status and treatment at work, for fear of being victimized by their employers. One ARV user said:
"I was once ill-treated in my workplace and forced to transfer to a place about 400 kilometres away but I am supposed to see the doctor. I resigned from the work because I preferred to stay close to my treatment site."
A female ARV user, who works as a shop assistant said:
"I resorted to asking my relatives to pick up my medications because my employer refuses to release me to go and pick up my medications."
In northern Botswana, freehold farms and safari companies are the major employers of unskilled labour. These work settings are sometimes located in difficult terrains, a long distance from the ART clinics. For some safari company employees, access to a treatment centre may be by air. In some of these settings, employees work for periods of three to four months before being entitled to a free flight back to the mainland. For these people, difficulties with transportation to attend clinics for treatment monitoring and medicine refills were major issues of concern.
One of the health workers explained:
"For the employees in the ranches and cattle posts, transport to health facilities poses a problem. Some employers do not release their workers."
There were reports of cases where individuals who worked on ranches and for construction companies were forced to take pay cuts for attending clinics. These attitudes by employers were said to constitute a barrier to adherence as people remained at work instead of attending the clinic. Most of the ARV users interviewed believed that more should be done by the Government to protect PLWHIV in the workplace, as this would help improve adherence.
5.1.4 Logistics and costs
In Botswana, patients do not pay for ARVs offered within the public sector. Logistics and costs were therefore viewed in terms of the availability of transport, transport-related costs, lost wages, money spent on snacks and food while attending appointments, and other treatment-related costs, as perceived by the ARV users.
In the qualitative survey, the health workers reported lack of transport - either no means of transport or no money to pay the fare - as the reason most frequently cited by patients for failing to attend the clinic for treatment review or medicine refill. Many ARV users, especially those who were not employed, said that lack of money to pay for transport was a problem. Some ARV users complained that the treatment centre was too far away and not always easy to access. An ARV user who had to travel from an outlying cattle post to the village to get a medicine refill said:
"I once missed my appointment for refill because there were no vehicles coming here. I was in the stop from early morning and by noon I went back home. Fortunately I still had some medications."
Another ARV user from one of the remote villages said:
"The clinic vehicle used to transport us. Now they say we are better so we should transport ourselves. I usually get 'piece jobs' and use the money to come and pick up my medicines."
There were some concerns among ARV users about the language used to communicate the results of laboratory tests to patients. As one ARV user said:
"One of the patients stopped the medicines because he was told that his viral load was undetectable, so he stopped taking his pills because he thought he was cured."
5.1.6 Alcohol and substance abuse
Alcohol abuse was cited as one of the reasons why some patients are not adhering to medication. It was reported that even the local newspapers had on several occasions cited alcohol abuse as one of the reasons for non-adherence. One of the respondents said:
"Some of the patients who take alcohol end up forgetting to take their tablets or omitting treatment."
Another respondent said:
"Those who take alcohol sometimes lose their drugs in the bars when they are drunk."