Information about HIV, AIDS and ART
While the majority of patients seemed to be knowledgeable about ART, a few patients were not well-informed about how ARVs work and were not aware of the consequences of sub-optimal adherence to ARVs. Perceptions about ARVs were not uniform among the users. Some described ARVs as having significant side-effects, while others perceived ARVs to be very helpful medicines which were decreasing the "fierceness" of the disease in the body. Several men said that if they stopped taking the ARVs the virus would increase and body resistance would decline, while most of the women indicated that taking ARVs makes the virus "sleep" and lengthens the patient's life. In FGDs, some of the participants observed that it was difficult to keep taking the medicines at the correct time.
Both male and female ARV users who had learned about the use of ARVs had positive opinions. One female client from Arumeru indicated that:
"ARVs have improved my quality of life. If I stop using them I will die."
Similarly, a male client from the same area noted that:
"ARVs have helped to increase my body immunity, my health is improving. If I stop using ARVs, the disease will come back."
A female ARV user attending an FGD in Dar es Salaam said:
"Drugs bring our energy back and we are getting hope of living."
A male participant in an FGD in Dar es Salaam was also positive about the impact of ARVs:
"My CD4 cell counts were down but after using ARVs now they have gone up. I'm not getting opportunistic infections."
Despite widespread information about the AIDS pandemic, the idea of bewitchment as a source of HIV was still reflected in the perception of some patients. A few of them thought that AIDS was therefore inevitable and that everyone was at risk of infection. From their perspective, someone with AIDS was presumed to be already a dead person. Three options for AIDS treatment were advanced: traditional healers, faith healing and the use of ARVs.
Although there was a difference between the study settings, in general there was no difference in perceptions about HIV and AIDS between the different groups of informants. Most key informants interviewed who worked in HIV-related fields commented that at the community level there was a lack of knowledge about ARVs and this was a threat to treatment adherence. Key informants stressed the importance of adherence counselling to ensure that patients do not drop out. They said that although medication was considered to be very effective, good counselling could help motivate patients to be more adherent. Although some key informants noted that belief in links between witchcraft and HIV infection still prevails in some population groups and reliance on traditional healing persists, many people increasingly put their trust in ARV medicines. Many more patients are now attending HIV treatment clinics and, as a result, these are becoming more congested.
Counselling in ARV administration is now increasingly included in information sessions for patients on ART. One male patient from Mt. Meru hospital who had received some counselling said he remembered to take his medication "due to fearsome instructions from doctors." However, a female patient from a faith-based facility in Arusha reported that she was not told what would happen if she stopped taking the medication. In Arusha, FGD participants expressed similar concerns about the quality of counselling. Participants at one male FGD reported that:
"You find 25 patients and only one person attending all these patients and he just tells you to go and collect your medication." (Male FGD participant, Selian, Arusha)
Similarly, a participant in a female FGD said:
"I did my HIV test (in AMREF Dareda) and was told that I am infected, (but) without proper preparation," meaning that she was not adequately counselled. (Female FGD, Selian, Arusha)
In contrast, patients in Dar es Salaam, commented on their appreciation of the quality of the counselling they received. According to male participants in different FGDs, the majority believed that counsellors were providing a good service, including providing information on nutrition. A participant in a female FGD in Dar es Salaam reported that:
"We are advised to bring our husbands here so that we are both counselled on how to live in harmony. Voluntary counselling and testing staff are very helpful to direct people where to go for ARVs."
According to interviewees, the main modes of channelling health-based information in the surveyed health facilities included leaflets, seminars, adherence counselling, television and video. Meanwhile, conversation between patients provided an additional source of information.
Disclosure and social support system
Out of 100 ARV users interviewed (70 exit interviews and 30 semi-structured interviews), only eight were living alone in a household. It was found that 93.5% of the 30 semi-structured interviewees who were on ARVs had disclosed their HIV status, with 82.7% of them receiving some form of treatment support, such as transport support, food assistance and reminders to take medicines.
However, interviews with key informants and FGD participants revealed that stigma is still prevalent in society. PLWHIV were said to be affected by stigma both at home and in the workplace. This could affect both disclosure and adherence. According to a participant in a female FGD (Selian, Arusha):
"My utensils were put separate, including my spoon. All your belongings are not touched and you feel bad."
The situation was worst for those employed in the private sector:
"I was a driver. I lost my job when my relative went to tell my boss that I was HIV-positive. " (Male FGD, Mwananyamala, Dar es Salaam)
"I lost my job after my boss noticed that I was HIV-positive." (Female FGD, Selian, Arusha)
"I work in a drug store. I am told not to touch medicine because my hands have black spots and have been told that if customers notice, they will stop buying medicine from our store." (Female FGD, Mwanayamala, Dar es Salaam)
"If I disclose I will be stigmatized. They look at us as if we are prostitutes. We are treated like leprosy patients." (Male FGD, Mwananyamala, Dar es Salaam)
"Disclosure brings problems. You can lose business. Sometimes I am not invited to attend ceremonies because I have disclosed." (Female FGD, Sinza, Dar es Salaam).
On the other hand, some respondents indicated that they had received some support as a result of disclosing their HIV status:
"I have told my family and if the time of taking medication comes they remind me." (Male FGD, Selian, Arusha)
"My husband knows my status and we are helping each other. We cannot disclose in a workplace." (Female FGD, Mwananyamala, Dar es Salaam)
Reminders to take medicines
A substantial percentage (44%) of respondents (42 out of 95) who were on ARVs reported that without any help they were able to remember the routine schedule for taking their medicines. Some of them commented that, as a result of strong counselling they had received they did not miss taking the ARVs. Meanwhile, 33 respondents (34%) reported having family carers, including a spouse and children, who used to remind them to take their medicines and 19 others (20%) said they used reminders such as clock alarms and calls to prayer at the mosque (adhana). Twenty respondents (21%) reported having forgotten to take their ARVs at some time since they started treatment.
Adherence to ARVs was also affected by other circumstances, such as forgetting to take medicines when travelling or very busy. One female FGD participant observed that failure to disclose and the need to ensure confidentiality can also inhibit people from taking medicine.
Lack of food was cited as a problem for most ARV users. According to FGD participants, lack of food disrupted the daily schedule for taking medicines and affected adherence. Both male and female ARV users complained that the medicines were increasing their appetite and that they did not have enough food. A male ARV user at St Elizabeth Hospital explained:
"The problem I have with ARVs is related to food. I have no money and ARVs increases appetite. I am not capable of buying food."
However, none of the ARV users interviewed for the study said they had stopped taking ARVs despite a lack of food. The persistence of ARV users in continuing treatment even when they went hungry was also corroborated by staff interviewed in the health facilities. A male doctor in Arumeru hospital observed that:
"Food is a big problem, patients are getting appetite when they use drugs, but have not stopped using medication."
Other interviewees remained concerned at the potential impact of hunger on adherence to ART. For example, a female FGD participant observed that some patients take their medication only once a day, in the evening, because that is the time when they have food, and a key informant in Sinza, Dar es Salaam, noted that some patients were selling ARVs in order to buy food. This implies that food scarcity can be a drawback to adherence.
Complexity of treatment regimen
It was also observed that the complexity of the treatment regimens is a problem for some ARV users. Patients on ART are required to take their prescribed medicines at the same times of day on a regular basis. However, ARV users had different perceptions of the treatment regimen and the correct time for taking the medicines. A female client from Arumeru commented that:
"It is a problem to take the medicines at the right time every day."
This particular client indicated that she was taking her first dose of the day at 0700 hours and the second one at 2100 hours, thereby exceeding the recommended time of 12 hours between doses. Another popular misconception was revealed by a male FGD participant in Dar es Salaam:
"It is true you can forget taking drugs according to schedule but it is not good to exceed the recommended time interval by more than five hours."
Most ARV users interviewed in Dar es Salaam indicated that they were taking their ARVs according to the required schedule, compared with a smaller proportion of those in Arusha.
According to the health staff interviewed in both Dar es Salaam and Arusha, most ARV users were following the required treatment schedule. A female nurse from Arumeru in Arusha said:
"Most patients follow the instructions given them on proper use of ARVs."
Similarly, a nurse from a facility in Dar es Salaam stated that:
"A few patients do not follow their appointments but the majority are using ARVs properly."
Meanwhile, a pharmacist in Dar es Salaam noted that:
"A few patients have difficulties in following the correct drug regimen."
Although ARVs are known to cause some side-effects in the initial stages of treatment, these usually subside over time. However, this important information is not common knowledge among patients on ARVs. For example, patients in Arusha said:
"I was not informed of side-effects and what will happen to me if I stop taking medication." (Male ARV user, Arumeru)
"I don't know, I have not been told of impending side-effects." (Female ARV user, Selian)
In one of the male FGDs, side-effects were cited as one of the reasons for missing a dose of ARVs. One male FGD participant from Dar es Salaam offered the following information on side-effects:
"When I started using medication I was feeling very cold. I went to ask at the hospital and they asked me, "Do you want to stop medication? Did we not tell you that the medicine had some side-effects?" Three days later I was fine." (Male FGD, Sinza)
However, in Arusha, a male FGD member reported that side-effects had affected his treatment schedule:
"I had side-effects and decided to take medication only once per day." (Male FGD, Arumeru)
Most ARV users reported experiencing some side-effects in the initial stages of treatment but these had largely subsided over time. However, in some cases, the treatment regimen had to be changed. Some of the common side-effects mentioned were body rash, swollen legs, nausea, headache, increased heart rate, diarrhoea and vomiting.
It was suggested by one respondent that adequate counselling and education about the appearance and disappearance (over time) of side-effects would help to better prepare ARV users for possible side-effects and make them more bearable.
"If side-effects are very severe patients may stop medication, but due to continuous counselling and education we give them we advise to continue and most follow." (Female receptionist, Selian Hospital, Arusha)