Supply side barriers
Participants emphasised service-related determinants of attrition, regardless of their level of interaction with the hospital to which they had been referred. Whether women had persevered in pursuing HIV treatment, dropped out early, or never attended their first appointment, reports of active discrimination from hospital staff dominated their narratives. Women with direct experience of the clinic described how hospital nurses openly expressed their hostility to sex workers, and conducted examinations and counselling with a negative attitude:
She opened my file and I saw her face just changed instantly, and she actually frowned and looked at me like I was disgusting her. Her first words to me were, ‘so you are a prostitute and you actually have the guts to come here to waste our time and drugs on you, why do you do such things anyway? Why can’t you find a man of your own and get married’? (SWH006, FGD2, 32 years old)
The nurse said to me, ‘how can you, a sex worker, even have high blood pressure? It’s high because of too much sex…you are wasting our drugs instead of us giving them to those who have proper high blood pressure, caused by women like you when you take and infect their husbands’ (SWH032, FGD3, 39 years old)
Public humiliation was considered an integral part of treatment for sex workers, and most women who had gone to the referral hospital felt they would not access services there again. In all 3 FGDs, women described how hospital staff would to the waiting area and make public announcements that all the sex workers present should go queue at the back or stand in a separate line:
We were in the queue with everyone else when suddenly one of the nurses came out and loudly said ’the sex workers who have come … please go and queue at the back of this line, we will attend to you last’. Everyone there turned and you could see they were all eager to see who these women were. We dragged our feet and went to the back. Luckily there were six of us, so at least the embarrassment and humiliation was somehow shared amongst ourselves and we just had to pretend like we didn’t care. I remember one lady who had also been referred from here actually walked away and left, we never saw her again… shame/ embarrassment is worse than death, ladies! (SWH003, FGD1, 29 years old)
Occasionally staff appeared accompanied by pastors from a local church, who came to preach at the hospital, and also publicly humiliated sex workers as they waited for their appointments. One woman reported meeting a pastor who felt sex workers needed some form of “cleansing”, and proceeded to “pray” for them.
“…all the prostitutes that are being mentioned here … come forward, come and stand in this corner right now so that we can lay hands on you and pray for you!” There were six of us there and we were dragged into a corner and they started praying with their hands on our heads and speaking in tongues. It was terrible and I was now crying as this woman kept shaking my head saying ‘demons of prostitution-come out in the name of Jesus…’ (SWH001, FGD1, 30 years old)
Word had clearly spread among sex workers of such demeaning episodes, deterring some from taking up their initial referral. Fear of being mistreated actively dissuaded at least three women from ever attending:
It’s just the thought of being seen as a sex worker that gives me the shivers to go there, I am scared that they will shout or humiliate me, as I heard they are good at doing that… (SWH013,FGD2, 20 years old)
Concerns about being identified as a sex worker were exacerbated by use of referral forms provided at the SWV clinic. Several respondents felt that these cards prompted insensitive comments from nurses who recognised the referral cards as originating from the sex worker service. When woman presented their referral letter, nurses would start frowning and ridiculing them reinforcing women's reluctance to take up referrals. One woman quoted her friend who refused to go to the hospital through the free channel, saying she preferred to wait until she could afford to pay herself:
This letter sells me out at that clinic, then those nurses will humiliate me in front of everyone. It’s for free with this letter, but I will not go…I would rather stay at home until I get my own money to go there…the card is like a tattoo written, “sex worker! Beware!” (SWH033,FGD3, 40 years old)
Participants discussed feeling embarrassed, shy, and unworthy of the service because of the stigma associated with their work. Internalised shame and anxiety about being known to be a sex worker reduced women’s confidence to attend treatment services:
It’s embarrassing, you know, to be seen as a sex worker by the health workers, especially if you come from the same area. If it is me I will just walk away and never come back… (SWH028,FGD3, 35 years old)
While criticism centred on the referral hospital’s atmosphere of discrimination and disrespect, sex workers also reported a range of service-related problems that reflect wider issues of Zimbabwe’s health system. For example, participants complained that staff had no sense of urgency when doing their work. They expressed dismay over the staff’s strict observation of tea and lunch times, during which waiting patients were left unattended:
It was as if they were dragging [their feet], just waiting to go off for tea and lunch time. I was hungry myself and I felt like leaving to go home to eat, then come back the next day. Then l realized that this will be the same situation the next day, so I just stayed, but I’m sure some people who are not strong enough cannot hold on the whole day, they will leave and simply not come back (SWH015,FGD2,32 years old)
Sex workers reported they would spend up to 8 hours at the hospital, wasting the whole day instead of doing something productive to earn money. Some work as vegetable vendors during the day so attending the hospital resulted in loss of income. Thus they preferred to wait until their condition seriously deteriorated before attending the hospital:
It’s better to go there when you are really sick because they waste our time… (SWH008,FGD1, 48 years old)
Demand side barriers
Participants in our study mentioned a range of other factors that limited their retention in care. Financial and logistical barriers impeded health service use. For instance, although the SWV programme paid the initial consultation fee and for CD4 count test, other charges are associated with treatment, women had to bear other costs such a US$ 10 fee for consulting a doctor for management of opportunistic infections. As women usually earned $5 for a “short time quickie” (sex with a client for not more than 20 minutes), or just $1 when desperate, such out-of-pocket medical costs were prohibitively expensive.
Respondents also worried that ART patients require more nutritious diets than a “normal” person, necessitating changes in their routine feeding habits. They felt that ARV drugs “were too strong” to take along with their regular diet of “sadza” (ground corn) and “muriwo” (green vegetables). One woman mentioned that taking ARVs made her eat more food and this was seen as an expense:
Have you also noticed that when you are on ARVs you eat a lot? You feel hungry all the time…with the little food some of us have, you can’t afford to be eating like that so you end up tempted to stop going there to get them. (SWH015,FGD2, 32 years old)
Travelling time was also perceived as a barrier to treatment. Some sex workers reported having to travel the day before their appointment so as to arrive as soon as the clinic opened. This was seen as tiring, boring and wasting productive time when they could be earning.