A total of 528 subjects were enrolled in the cohort, including 291 from the urban public hospital and 237 from the rural clinic. At both sites, these patients were almost equally divided among those who had been on ART 6–12, 13–24 and 25–36 months at the time of enrolment. Twelve months after enrolment, seven subjects had died, 25 subjects had been referred from the urban hospital to a nearby primary care clinic, 16 had transferred to another treatment site and 17 were more than 1 month late for their last scheduled medication pickup or consultation and were considered to have defaulted. Patients were eligible for the qualitative study if they had defaulted on treatment for more than 1 month. At the time of the interview, defaulters were between 3 and 11 months beyond their previously scheduled appointment (median = 7 months). Transfer patients were interviewed 2–13 months after their final appointment at their initial clinic (median = 7 months). Fourteen of the defaulting patients and all 16 transfers were interviewed regarding reasons for default. Two of the defaulting subjects were not located and one refused to be interviewed. Twelve defaulters reported having stopped treatment at the time of the interview, and two reported that they had re-started treatment at the original clinic, after an interval of missed appointments.
In this analysis, we included both patients who transferred to new clinics on their own accord and patients who stopped treatment. While transfer patients may successfully remain in care at another site, their experience still provides insight into the struggles and challenges that antiretroviral (ARV) ARV patients face. We chose not to interview patients who were down-referred from the urban hospital, as good adherence and an undetectable viral load are criteria for down-referral, and these patients thus have better-than-average clinic attendance records.
In the larger random sample (n = 528), 75% of patients were women. Among the qualitative sample of defaulters and transfer patients, 65% were women (). In this small qualitative sample, we found that compared to transfer patients, defaulters were younger, more likely to be woman and have higher levels of schooling, and they were less likely to receive government grants or be unemployed. The default rate in the study population was similar between men (4%) and women (3%), and the transfer rate was also similar (5% for men, 4% for women).
Demographic background of study respondents
Perceptions of treatment
Patients universally reported that they had experienced important, even extraordinary health benefits from taking ART and recognized that stopping ART would lead to illness. Weight gain and improved mobility were commonly noted:
The ARVs made me gain back my weight…even if I have not gained it very much, they enabled me to wake up again… (Female 31, defaulter 9 months)
I don't know where to start when it comes to ARVs because I feel I'm a person (again)…, People who saw me when I was ill cannot believe what they see (now). (Female 31, transfer patient)
The ARVs worked for me because they brought me back to life, I feel different than before. At that stage I was very, very, very sick…, so they gave me back my life. (Female 36, defaulter 4 months)
Subjects also showed an understanding of the relationships between ART and health, ART and CD4 counts, and CD4 counts and illness.
ARVs are fine if taken properly… I am sick because I stopped. (Male 27, defaulter 10 months)
The difference is that when I was taking ARVs, I was not sick, but now I am starting to feel a bit sick, my bones and my arm are not well. (Male 40, defaulter 4 months)
Before I took them I was weak, I could not do anything, take a walk like other people…now my immune system is high…it is 800 and something… from 123 in 2005. (Male 48, transfer patient)
Depending on their CD4 I will tell them to go and start medication, and if they are sick, but if it is not too low it is fine not to start. (Male 34, defaulter 11 months)
In addition to improved health because of ARVs and understanding the relationship between treatment and health, most respondents reported that they would refer family and friends for ART if needed. The respondents that reported that they would advise others to take ARVs if needed also demonstrated a high level of understanding of the importance of remaining on treatment and taking pills on time.
I will say that because I was sick, I was lying down because of my sickness… and I woke up again, I will tell them to drink ARVs in the right way and on time. (Female 35, transfer patient)
Because I saw they work, they have power, as I was told, and to use a condom and drink them accordingly. (Male 29, transfer patient)
Current physical and mental health status
Among defaulting patients, seven of 14 reported experiencing negative physical health effects since stopping treatment, although some reports were minor, such as a worsened cough.
I left work actually early today, I was not feeling well, I felt dizzy…, yes, it is also how I used to feel when I started realizing I am HIV positive… I also had some diarrhoea a bit since yesterday …(Male, 27, defaulter 10 months)
I'm fine but not so fine, my feet are painful and I have a little coughing, I cannot go up the stairs, and it is because I am not taking ARVs. When I was taking ARVs I was fine. (Female, 33, defaulter 8 months)
I have not been well for the past 2 weeks, even now, it is my temperature and I have headaches …(Female, 32, defaulter 2 months)
I don't have anything that is a problem with my health, I am still fine. (Female, 36, defaulter 4 months)
A number commented about feeling stressed or worried, because of pressures at home or at work or concern about having stopped treatment.
My stress is that I cannot come to collect my treatment…there is no pain in the my body, the problem is I work in a mine and I cannot come to the clinic because it is far (Male 40, defaulter 6 months)
Others reported, however, that they felt well both physically and mentally.
All in all I am happy, except for some small things that can cause stress…like employment, I have a lot of work to do and I cannot cope… but I am generally happy. (Female 24, defaulter 4 months)
Reasons for defaulting
All interviewees reported disclosure of their status to others. In fact, all respondents, except for one transfer patient, reported that they had someone in their household who knew about their treatment. Respondents rarely reported stopping medication because of family pressure or stigma. Although one subject indicated that fear of stigma in the workplace contributed to his inability to request time off to collect medication, another respondent stated that pressure and fear of disclosure did not affect her decision:
One of the reasons I stopped treatment might be because of [transportation] costs, but not side effects or fear of disclosure, because there are people in my street who know my status, and my friends. No, no one has pressurized me to stop my pills. (Female 31, defaulter 9 months)
Although the treatment sites did not charge for care, several subjects had difficulty with transportation costs. Of the 20 patients who transferred to new treatment sites, 16 had lower transport costs to get to the new clinic. Reduced transport costs and time were the main reported reasons for transferring. Transfer patients were more likely to be unemployed and be receiving government grants than defaulters, suggesting that transport costs were indeed an important consideration. Transfer patients spent R22 (range R10–R200) on transportation at baseline, a cost that fell to R12 per visit (range R0–R46) at the new clinic. The median spent on transportation by patients who defaulted was R13 (range R0–R72).
Of the 14 defaulted patients, seven reported that employment caused difficulties with obtaining medication. Five reported that they could not take time off during the regular clinic operating hours. Four reported a missed appointment or medication pickup because of travel for work or family-related events.
I was not able to go to the hospital because I started at a new company and I could not take off…clinics must be open over the weekend for people who work … most people who do not turn up for their appointments are working. (Male 34, defaulter 11 months)
I am 4 months without taking treatment, the main reason being that I work Monday till Saturday, I don't have any other reason. Before I worked for a different security company, and I could take off for 3 or 4 days, with this company there is no offs. (Female 31, defaulter 4 months)
Several patients cited missing paperwork, including clinic cards, transfer papers, and proof of travel, as a reason for missed appointments.
I lost my card and I was afraid to come to the clinic … isn't it that at the reception when you have no card they tell you to go back …(Female 32, defaulter 2 months)
Several subjects reported abandoning treatment because of long wait times, and there were reports of other health systems concerns. Among the issues reported were long queues, difficulty in booking appointments, difficulty tracking down paperwork or staff, too many patients at clinics, not enough time spent with providers, and clinics running low on medication.
You see, Sisi, when you go to the hospital you have to book … next you go to the clerks, but every time there is a misunderstanding, they do not book you on the appointment you agreed on. Even when you try to make an appointment on the telephone, you never know if they took your file out to book you on the date you requested or not. And when you go back you wait until 4 o'clock, they start telling you that you did not book. (Female 36, defaulter 4 months)
The thing that is making me not to go to the clinic is because my file is held by the social worker, I have been there twice, I do not have money to be going up and down and I walk there and back. If I want money they (social workers) do not give me. (Female 33, defaulter 8 months)
About the pills, sometimes they say there are no pills and send me to the hospital but I am persevering, I go there. (Female 37, defaulted on clinic visits 8 months, but reported obtaining pills from another clinic)
They do not have the time for people, they only give you what you need and then you go … (Female 36, transfer patient)
Only two defaulted and five transferred patients reported side effects. Of these, three complained of extremity pain, one of eye discomfort and two of body shape changes. Two women reported that side effects (body shape changes) might be a contributing factor to default, although this was not reported as a major barrier to treatment.
But they have advantages and disadvantages … there are things that are hidden, like they deform you, they changed my structure. (Female 36, defaulter 4 months)
[Regarding reasons for stopping ART] It can be because of side effects with my breasts, they grew very big (Female 32, defaulter 2 months)
The use of traditional medicine was not a major theme in respondent reports, but it was mentioned by two subjects as contributing to their decision to stop treatment. One subject had stopped taking pills while in training to become a sangoma (traditional healer).
I am not taking ARVs, I am just buying and drinking my immune boosters … (Female 38, transfer patient)
I have been using Imbiza (traditional medicine) since I stopped ARVs …, it was my mother who said we must try the traditional healer because they said his Imbiza helps …(Male 27, defaulter 10 months)
Finally, the belief that a positive attitude could directly affect HIV progression and even effectiveness of ART was prevalent in the interviews.
I see them (ARVs) as right, but you know…, they go with the belief of a person and with the person's body … if a person believes that they will help they will, but if a person is not trusting them, has a negative belief about them, then they will not help them. (Female 24, defaulter 4 months)