Social contracts are clearly symbolic rather than conventional, legal contracts involving reciprocity, mutual consent, terms and conditions. However, contractual rhetoric provides a way of organizing and revealing the moral vision, inclusions and exclusions of social contracts and our results are therefore loosely arranged to explore the terms, expectations, threats and assertions of the post-apartheid health care contract.
Entering and maintaining the post-apartheid health care contract
In this section, we explore the expectations that patients and providers have of themselves and each other, and their reasons for seeking or delivering health care services: why they enter and remain in the post-apartheid health care contract and what they expect from it.
In need of care
To become a patient and thereby enter the post-apartheid health care contract, individuals must need care. To establish need, the health system produces indicators, measures and clinical benchmarks that guide diagnosis and treatment. These include guidelines for interpreting physical symptoms, testing blood, urine and sputum, weighing patients, and analyzing their medical histories. In our study, most patients indeed sought care when they felt they were sick, pregnant or ‘in labour’ - in need - presenting with physical symptoms that providers then measured and assessed to determine a treatment course:
I just started feeling my legs were painful, swollen and they were very sore, [I was coughing badly] so I decided to come to the clinic so that they can check it out […] and they ran some tests, they tested me for HIV and found that I was infected and […] have TB. So I had to go to classes where they taught me about the treatment of HIV, after that they referred me to [the ART clinic] they checked me, actually they took my blood, and then they gave me the HIV tablets […] TB tablets as well (female patient, 23, TB/ART services, rural site).
However, needing care from the patient perspective was not always enough to secure patient admission to the health care contract. Some patients felt very much in need of medical attention but did not always receive it, even if they expressed their need to providers. This could result in their exclusion, sometimes just temporarily, from the contract, with providers overlooking patient histories, patients confusing (often unexplained) treatment side-effects with ill health, lack of equipment, lost or unfiled records, or false test results.
The clerks would tell people that their results were lost and advise them to have their tests re-done, instead of ever managing to get on top of the unfiled results’ backlog (observation notes, ART services, urban site 2).
My period was gone, I was two months when I found out that I was pregnant […] I went to the [Midwife Obstetric Unit] and they told me that they don’t do pregnancy tests there and they told me to go to a private doctor, and the private doctor did the test (female patient, 29, maternal services (homebirth), urban site 1).
With his second case of TB, a casual construction worker (unable to work at the time of the interview due to his ill health) was told that his sputum tests were negative and to retest in eight weeks:
I said to the sister, “but I can feel that I am [too] sick to wait for eight weeks” so sister said, “you want to have TB?” but I said, “sister, it is not that I want TB but I can feel my heart is sore and I am short of breath” (male patient, 35, TB services, urban site 1).
Conversely, some patients did not realise or acknowledge that they needed (specialized) care until the system ‘told’ them (particularly women diagnosed with HIV during pregnancy and patients who tested HIV positive through the TB service). Sometimes, individuals only entered the health system when they were extremely sick or during/after the birth of a baby; more than simply in need but in crisis.
You still get patients who are very sick, being initiated very, very late in their stages of the illness (female social worker, aged between 30–34, ART services, urban site 2).
The pains started around two […] Then at around three that’s when I woke my baby’s father and when he tried to find transport from our neighbours, we found that their cars do not have petrol. Then we called an ambulance and they were not cooperative […]. Then at around four he called them again and told them that I am ready to give birth now. Fortunately this time the [emergency services] lady answered the phone and she listened. He then explained to her that the baby is coming out now. Then the lady asked if there was an older woman in the house but he told her that there is just the two of us there. Then on the other hand they heard the baby crying. Then the lady asked if everything has come out and he said no […] (female patient, 27, maternal services (homebirth), urban site 2).
Complex, varied reasons were offered for such delays, including stigma and fear of being diagnosed with HIV or TB, high costs of seeking care (see also) and, for six of the eight babies born before arrival, unavailable or delayed ambulances (see also).
In keeping with the narrative of (extreme) need, once admitted as patients to the health care contract, many chronic care participants were motivated to stay by the alleviation of physical symptoms and improved health:
The hospital visits are good for me because I get my treatment and that will help me stay alive for a long time (female patient, 23, TB/ART services, rural site).
[…] reason that made me to continue with the treatment is that I feel comfortable with the treatment and you cannot see it that I am ill. I am no longer coughing or suffering from headaches. I am always feeling well and I have no complaints with my health (female patient, 32, ART services, rural site).
Complying with the terms of the health care contract: the docile patient
However, from the perspective of the health system, needing care and feeling better with treatment, while important, are not sufficient, for ongoing patient inclusion. Ideally, patients must also take on a medical discourse and internalize their responsibilities:
[Before being initiated onto ART, patients] have to attend three classes. The day they have to initiate, they come to us and there is a form they have to sign that states they do understand that they have to take the medication for the rest of their life. Because sometimes they might come back and say that they didn’t want to take the treatment so by signing the form they are actually binding themselves and showing responsibility (female enrolled nurse, aged between 45–54, ART services, urban site 2).
Pregnant women must similarly show responsibility by following an ideal care pathway: early and regular attendance of antenatal care, pre-booked deliveries, postnatal care, and re-entry into family planning services. In this narrative, to be successfully admitted to the health care contract, patients themselves must become authorities, “experts”, about treatment adherence, weight, blood pressure, good nutrition, medication, CD4 counts, viral loads, and other medical touchstones important for their physical recovery or safe pregnancy: “they have to know them by heart” (female enrolled nurse, aged between 45–54, ART services, urban site 2). They have to become self-disciplined.
Additionally, patients have to show that they can be trusted to maintain this contract, usually by expressing willingness, commitment and adherence to chronic treatment or natal care (measured by pill counts, improved physical symptoms, blood results). Being compliant, deferring to the provider’s opinion and accepting their diagnosis, treatment path and rules, are also important for ongoing patient inclusion. For many patients in our study, this meant being quiet and passive – becoming “docile bodies” – rather than risking humiliation, ridicule or ostracism:
It’s like the nurse that was helping us [with our antenatal care] had an attitude; when we asked her something, she treated us like children or comics. She was so impatient […] shouting all the time, when we asked for help she would get irritated and you could see that she is irritated. Especially there was another lady here […] who did not understand English, meaning these medical terms they use […] they made her a joke […] All the nurses were laughing at her […] You do understand that this lady didn’t know anything, that is why she was asking because she doesn’t know anything like that […] once when I was trying to ask something as well and this nurse just looked at me as if I was crazy and never responded, so I just kept quiet (female patient, 25, maternal services (stillbirth), urban site 2).
Here, belittlement and public shaming of “ignorant” or “troublesome” patients by providers – a commonly reported practice in this study and previously[26, 41, 42]– serves as a form of contractual maintenance, keeping docile those who witness the public spectacle, while simultaneously reprimanding transgressors. In Foucauldian fashion, successfully included patients were often also rewarded with greater autonomy and independence viz. fewer clinic visits, self-management of larger volumes of treatment drugs, and other incentives to maintain their contractual commitment:
you have to come to the clinic every time to take the pills but if you [show that you] know how to take the pills […] they give you more pills to take on your own […] when they see that you are committed into taking your treatment (male patient, 36, TB/ART services, urban site 2).
Moral guardians of the post-apartheid health care contract
As an expression of the right to access health care for all, the post-apartheid health care contract has to be inclusive of everyone; no one in need of care should be excluded by having their treatment or care denied. This rhetoric was often repeated by providers in our study:
Remember that you don’t require an ID or passport. Everybody gets treatment, no matter their creed, race, nationality (female programme manager, 50, ART services, urban site 2).
So we know we have been told to treat [patients] equally irrespective of their social standing or whatever (female assistant manager, 61, maternal services, urban site 2).
However, with the onus falling on patients to prove their worthiness for inclusion, this all-inclusive ideal was rendered conditional in practice. Not everyone in our study was automatically or un-problematically included. Simultaneously, the creation of conditions for patient inclusion in the health care contract conferred a form of moral guardianship on providers: contractual caretakers who ultimately determine which patients to include in what ways. For many providers in our study, this guardian role was expressed as one of paternalism, reminiscent of an era before patients had the rights they do now:
You know, patients are like children. A child does not know a thing. You as an adult, you teach the child. The patient knows nothing about TB. He knows nothing about what he is suffering from. We’ve got all the knowledge and the facts about TB (female operational manager, aged between 50–54, TB services, urban site 2).
Often, steering patients on the “right” path, teaching them to do the “right” thing, was tied to an identity of working altruistically, “in service” of patients.
Altruistic professional versus uncaring mercenary
With their job descriptions and place in the system, health care workers are - by definition – included in the health care contract. In our study, many spoke about becoming providers and thereby entering the contract in response to a “calling” or willingness “to serve”; a vocation. For some, this was an active political decision to uplift their communities and support the country’s transformation agenda. However, others admitted more pragmatic reasons for initially joining their profession, mostly linked to limited career opportunities, either when apartheid policies restricted career paths (especially for black women), or post-1994, where training is state-subsidized. Yet, most followed with: but, “I have learnt to love nursing and think it is a calling in a way” (female programme manager, 50, ART services, urban site 2), deferring to the dominance of an in-service narrative:
Currently, I am in public service because it’s part of the training and I am specialising in obstetrics, so […] I am forced to be part of the service. [But] I intend to stay longer even after qualifying as a specialist because it’s eh, I think the public sector has more people who need us than private: people who are not cared for, people who have less resources who cannot afford the private doctor, so they have got nowhere to go. And they need us most. So I believe it will be the right thing to be where l am needed actually […] where people, the poorest of the poor, are needing a doctor (male registrar: obstetrics, aged between 35–44, maternal services, urban site 2).
This envisaged ideal was given further definition by providers who spoke about expected ways of being and interacting once in the provider role - caring medical experts and more: professionals, conducting themselves “properly”, maintaining confidentiality and establishing boundaries with their patients:
[My] problems are left behind, put them aside because […] the patients […] too have their own challenges in life and part of those challenges are the reason why they are here and they want us to help them, so it won’t be professional for me to offload to them as a service provider (female VCT counselor, 28, TB/ART services, urban site 2).
“Being professional” was also linked for providers to punctuality, neatness, institutional loyalty, supporting and respecting colleagues, and showing willingness to go the extra mile; a reminder that providers operate and are accountable within a complex organisation, governed by formal employment contracts and codes of conduct. This requires that providers respond to a set of expectations from within the health system (alongside acting in the service of patients and communities) in order to maintain their own inclusion in the health care contract. They too must become “docile bodies”.
Some patients in our study similarly imagined an ideal provider motivated by altruism and professionalism. But, this expectation was often revealed only in contrast to a disappointing or negative experience:
[…] the staff here is useless because they don’t do their work like they love what they do (patient comment, observation notes, ART services, urban site 2, emphasis added).
And even the way they were treating us it was not a proper way of treating other people. We don’t deny that we are there to get help but that is not the way they should offer us their help […] they don’t respect us at all, it’s like we are there to bother them, some of them it seems like they bring their problems from home to work, you can’t wait to be out of the clinic sometimes because of the way they treat people (female patient, 25, maternal services (stillbirth), urban site 2, emphasis added).
Other patients had lower expectations of health care workers, repeating a popular public stereotype of providers as uncaring and mercenary, acting in their own interests, rather than in support of patients or communities. Many providers, especially nurses who had been working in the system for a long time, were also aware of, and reacted to, this stereotype:
[When community members see you are a nurse] they suddenly forget that you are one of them […] I usually take off my epaulets the minute I reach home. I go back into my ordinary clothes and be just like the basic person that is accessible to them (female assistant manager, aged between 55–64, maternal services, urban site 2).
[…] after work, I’ve got a spare jacket in my car. I take off this [gestures to jacket with epaulets] and wear my spare jacket because people no longer respect nurses like before. They say nurses are not nice, they are very bad. I don’t know why (female professional nurse, 60, maternal services, urban site 2).
Such representations of providers (particularly nurses) as “not nice” or “very bad” contradict and threaten their stated raison d’etre of altruism and professionalism, and many nurses in our study expressed hurt, anger, demotivation, and even withdrawal from the contract as a consequence. While most providers identified positive changes with democracy, some (mostly older nurses) also mourned a lost identity; on one hand nostalgically evoking a sense of belonging to an earlier social contract which had been configured - in a highly complex way around race, class and gender - to accord nurses a certain social status within their communities, and on the other, conveying a sense of displacement, of not quite belonging to the present social contract and feeling marginal in the changed context.
Threatening the post-apartheid health care contract
Veitch (2011) argues that those within the margins of society are not marginal in the discourse of the social contract but rather generate anxiety and attention because they have potential to affirm (if they can be re-included) or derail (if they refuse to participate) the moral vision of an inclusive and equitable contract, and the structural, systemic divisions that this ideal may gloss over. In Foucauldian terms, the social contract produces “deviant categories” of people – hazardous, useless or worthless – who simultaneously threaten and entrench the status quo and the docile bodies it safely includes. In this section, we consider patient and provider accounts of access barriers to health care and ways in which these threaten the post-apartheid health care contract.
Defaulting or delayed: the dangerous patient
Drug resistance caused by patients interrupting their ART or TB treatment (defaulting) has undermined the TB cure rate and compromised the efficacy of ART, creating enormous frustrations for providers, patients and the South African health system as a whole. Similarly, the delayed presentation of pregnant women to antenatal care is a major challenge for improving the country’s poor maternal health outcomes. For providers in our study, defaulting or delayed patients were generally represented as dangerous because of their risk to patient- and community-health but also, because they were perceived to threaten provider professionalism: “when they have defaulted it comes back on you” (female student nurse, aged between 25–30, TB services, urban site 2). Defaulters draw unwanted attention to clinical services (and a related “bureaucratic compulsion to meet targets”) and thereby challenge the quiet inclusion of providers in the healthcare contract:
Now remember that if your TB cure rate goes down, [the authorities] will phone the manager of the clinic to say, “hey there is something wrong with your services?” Now if you don’t go in and pick up the areas of concern and address them you are not going to be able to account for your low cure rate, you know (female operational manager, 54, TB services, urban site 2).
I get affected when I have defaulters because they put a drawback on me and I can’t push [up] my cure rate […] I look like I am not taking my job seriously, you see, something like that. And it looks like I don’t give health education but you know that you do give them health education (female auxiliary nurse, 53, TB services, urban site 2).
Staff in maternal services similarly expressed anxiety and frustration about having to manage complications (and associated high mortality and morbidity rates) that might have been avoided if women entered the health care contract earlier in their pregnancies.
Various explanations were offered for defaulting and delayed attendance of antenatal care services, including HIV-related stigma, lack of social support for patients, and patient beliefs and pressures:
When a patient is sick, this is now culturally speaking, they will first try other things, you see, before they come to hospital. As a result of that, the greater majority of the patients who die usually come late to hospital, very late. And now with HIV around, it's even worse. And sometimes, while patients are still in hospital the relatives will come and say “look, we would like to have our patient because we have established what the problems are, we need to take the patient home” (male doctor, age unknown, TB services, rural site).
Treatment side effects, health improvements with treatment or simply wanting a break from the chronic routine were also presented as reasons for defaulting:
When they start to feel better they will give you trouble (female auxiliary nurse, 53, TB services, urban site 2).
This lady was on treatment since 2004, then she just said, “I just wanted to take a break and um I mean I’ve been taking this medication far too long now and I felt that I was better […] so I just wanted to take a break” and actually when she came back [six to eight months later], she was very sick (female social worker, aged between 30–34, ART services, urban site 2).
Some defaulters were portrayed as “stupid” or “ignorant”:
Patients are so ignorant because honestly and truly they are educated on this and all the information is all around them but because of blind ignorance […] they end up saying, “I’d rather die than go to the clinic to take treatment” (female student nurse, aged between 25–30, TB services, urban site 2).
Others were presented as defaulting out of entitlement, wilfully abusing their contractual rights without living up to their responsibilities “because if one feels that they want to stop treatment they do so”:
Before people had rights, patients used to do the right things and you wouldn’t fight or argue with them, everything was nice (female auxiliary nurse, 53, TB services, urban site 2).
I hate the patients’ rights with all my heart. Because they have got rights and they ignore the responsibilities […] And you can’t do a thing, your hands are tied (female operational manager, aged between 50–54, TB services, urban site 2).
Poverty: the suffering patient
Poverty was identified by both patients and providers as a significant barrier to uninterrupted patient inclusion in the health care contract, impacting especially on transport affordability, particularly difficult for those in the rural area, where distances to health facilities are large – see also) and the availability of food for patients (essential for the efficacy of ART and TB treatment):
[Defaulters] don’t have money to go to [the clinic], nê? At the same time they don’t have food at home, they don’t have money to buy soap to wash (female staff nurse, 28, TB services, urban site 1).
Most patients in our study wanted to be adherent, often making large sacrifices in an effort to remain included in the health care contract - walking long distances daily (often in bad weather while in frail health), waiting for a number of hours in long queues, borrowing medication or money, sometimes even selling assets (see also) - and consequently feeling that if they had to break the contract, this was not done by choice:
I stopped in the middle because these tablets you cannot take them without eating. And I was not working and these tablets are eating your stomach and [you vomit] when you have not eaten. I tried to borrow some money from someone to sell some cheap stuff at home so that I can eat because even my children were not working - they were looking to me [to put food on the table]. That is why I look like someone who is taking treatment wrongly [i.e. defaulting]. Then after I sold those things, then I saw the profit; there was food in the house then I always came in here […] So when I started having some money I always came to the clinic always (male patient, 53, TB services, urban site 1, emphasis added).
Many providers were sympathetic to such “everyday suffering”[20–22] and did not allocate blame: “at the end of the day, you know that [patients] can't take medication on an empty stomach” (female pharmacy assistant, 26, ART services, rural site). Rather, this suffering was largely viewed as beyond the control of patients, providers and the health system; a social determinant of health requiring upstream and long-term solutions:
Maybe to get them a job so that they can get something to eat, because most of them, they are not working, there’s no pay. If maybe, the government can do the pay [grants] for them […] (female acting TB assistant, 27, TB services, urban site 1).
In addition, however, many patients in our study included unacceptable provider actions and attitudes as exacerbating their suffering.
Unacceptable care: the dangerous provider
In our study, patient inclusion in the health care contract (mostly from the patient perspective) was threatened by unacceptable provider behaviour and the delivery of uncaring care. In some extreme cases, negative interactions with providers resulted in patients withdrawing (even if temporarily) from the contract by dropping out of services:
[…] the nurse was standing in front of many people talking to me loudly saying that my CD4 count now is very low and I have to start the treatment afresh. And that hurt me a lot because she should have been polite, maybe call me to her office because she’s got one, and talk to me nicely, explain that because I have defaulted and my CD4 count is low, then I have to start the treatment afresh, unlike what she did shouting at me in front of many people. Then I went home but I was not ok with that. Then after two or three days I came back here and told her how I feel about what she did. And she only shouted back asking me why am I there at that time to collect the pills and that’s when I decided to give up the pills [for eight months until I developed sores. Then I forgave the nurse and went back to the clinic] (male patient, 35, TB/ART services, urban site 2, emphasis added).
More typically, chronic patients continued (or attempted) to access services but were left feeling disrespected, dehumanised and devalued in these interactions. Some maternal patients similarly narrated negative experiences with health care workers during antenatal care and labour:
I remember this one nurse as I was screaming in pain she just walked out and the other one was sitting on the corner with her phone and her feet on top of a table, laughing and chatting […] I started banging the wall because I couldn’t bear the pain. She just said to me I shouldn’t do that because I will break down the hospital. The other one said to me “you are here to bother us” and I responded that the only thing I’m asking for is water - they still said I’m not supposed to drink water (female patient, 26, maternal services (stillbirth), urban site 2).
While never questioning their own commitment or intention to serve patients, certain providers in our study did reflect on the behaviour of a few “difficult” colleagues:
[She is] somebody who is difficult […] She does not see the perspective [of the mothers or the hospital’s efforts to entrench a new baby friendly, kangaroo care policy]. We are struggling [to manage her] (female assistant manager, 61, maternal services, urban site 2).
Dismissive, overly-technical or limited communication with patients was also identified by providers as a challenge for sustaining patient inclusion:
[Ongoing access] depends on the way we as providers treat them [patients] and how well you communicate with them (female VCT counselor, age unknown, TB services, urban site 2).
Under-resourced: the overstretched provider
For providers in our study, unacceptable care was largely narrated around the negative actions and attitudes of individuals. In contrast, resource constraints and staff shortages emerged as more systemic threats to the quality of care delivered and, ultimately, their own inclusion in the contract:
I would like to see the clinic being well staffed so that we can give quality nursing. What we are doing now is not quality nursing. We are just trying to cover everybody; nobody must go home having not met the nurse. And we don’t feel good about it. We are not practising what we are trained to do but it’s beyond our powers. […] When I see a crisis there, I turn that way, another crisis there, I turn that way. There is no planning (female operational manager, aged between 50–54, TB services, urban site 2).
[…] the clinic is growing, it’s not frozen [unlike staff posts] and the work must go on, you know because you don’t want the patients to be unhappy so […] we try to make the best of you know the few resources but of course, I mean I woke up today I was sick but [came to work nonetheless because …] we see over 120 patients in the clinic and then [I am the only] doctor, it’s crazy (male doctor, 36, ART services, urban site 1).
Feeling overstretched and under pressure, yet also beholden to “keep patients happy”, was a common complaint for providers, often causing conflict, rather than complementarity, between being an accountable employee responsible for “getting the work done” on one hand, and acting “in service of patients”, on the other: “at the end of the day it's not the best quality of care that you are supposed to [deliver]” (female professional nurse, age unknown, TB services, rural site). Through this narrative, providers perceived themselves as “doing their best” under difficult circumstances (much like “suffering” patients). Any compromised patient care was presented as beyond their control and despite their best intentions as guardians of the contract. Many providers felt highly anxious and frustrated by having to manage competing and intense pressures within the constraints of limited resources, further fueling a sense of marginalisation from the present context:
I lie awake at night, worrying that I will be sued, my house and car repossessed, my family compromised by these challenges. And I think, “why don’t I just emigrate or leave the public sector?” (manager comment, observation notes, maternal services, urban site 2).
Demotivation, burnout, and withdrawal from the system are ever-present threats on the provider-side of the health care contract. Patients in our study were not unaware of these challenges but felt they should not have to bear the negative consequences thereof:
I felt that I was not treated the way I wished I would have been treated. I know it is not a private hospital and I understand [providers] are overworked and underpaid but it is not my problem. It should not affect my health (female patient, 26, maternal services (stillbirth), urban site 2).
Reasserting the post-apartheid health care contract: ways of including
From a Foucauldian perspective, the social contract seeks to reward and re-integrate those on its margins (defaulting or suffering patients, overstretched or difficult providers) when they comply with contractual norms and return to the mainstream, while denying access to those who stay out of the contractual reach[10, 46]. In this section, we consider some ways in which the post-apartheid health care contract strives to reassert itself when threatened by access barriers, including poverty, resource constraints and unacceptable service delivery.
Trusted, docile patients and quietly productive providers – the successfully included – are, in many ways, invisible in the health care contract, while defaulters from chronic care and late-comers to maternal services, along with the providers responsible for them, solicit much more attention. For ART and TB services, the health system has developed extensive procedures and protocols for trying to re-include defaulters: follow-up telephone calls, home-based visits, making use of treatment buddies, volunteers and community health workers, sometimes even nurses themselves, to trace people:
[Our TB nurse] was so dedicated, she would go out to look for a patient that hasn’t attended to for a number of days […] personally she would go out and find the patient ask, tell the patient that she didn’t see her in the clinic […] beyond the call of duty (female student nurse, aged between 25–30, TB services, urban site 2).
The caring provider
Within the South African health system, untraceable patients are usually categorised as “lost to follow up” and excluded, with little further effort to find them. However, for those on the margins in our study (traced defaulters or those who seem about to default), a number of strategies were deployed to retain or return them to care. At an individual provider level, these included positive rewards such as offering encouragement, friendship, food and financial assistance:
We’ve had to give money […] privately […] to patients, which we don’t encourage but sometimes you hear their stories, you just cannot hold back (male doctor, 36, ART services, urban site 1).
Providers also sometimes mediated health beliefs and cultural practices for patients at risk of compromising the efficacy of their ART or TB treatment or defaulting in favour of traditional medicine:
I also tell them that, “people you can do your traditional things but please ask them not to make you vomit […] They can steam you or do anything but they should not make you vomit or give you a laxative because when they do, all that they are getting rid of is tablets in your blood system, you see” (female auxiliary nurse, 53, TB services, urban site 2).
I just tell them that, “if that is what you believe in then its fine” because I can’t stop them from believing in what they want to […]. I just explain to them that sometimes HIV can become latent and undetectable and the person will start believing that they are cured whereas they are not, that person can still infect the other, without forcing them to believe in what you say, they have to make their own choices (female VCT counselor, age unknown, TB/ART services, urban site 2).
The value of “good communication” was acknowledged by providers in both chronic and maternal services; important for retaining patients in the health care contract, reasserting the terms of engagement, and even expanding the scope of such inclusion to additional or future services:
I think communicating with the clients is very, very good. You know talking to them even for a short while means you are part of them: “remember that we are part of the community” […]. It’s a matter of marketing our services that we are rendering at our catchment area so that they know […]. One day you want to talk about cleanliness, one day you want to talk about children, you know, you want to talk about the road to health (immunization) card. You know, just to remind them that these are the things we expect you to do at the clinic (female operational manager, 54, TB services, urban site 2, emphasis added).
For patients, respectful, attentive communication, humour and kindness positively enhanced their access experience (in contrast to the alienating and disempowering effects of adverse engagements). Often this alleviated their suffering and became a reason to regularly return to services:
I started to know the sisters that helped me and I started to talk with them. They would ask you, “how do you feel? […] what can I tell them about the illness?” […] They helped me a lot. Sister [name] was my pillar here. She was making me happy, she always smiled and she encouraged me to say that it was worth it to live. It was a pleasure to come to this clinic (male patient, 49, TB services, urban site 1).
Facility-level leadership, flexibility and initiative
Beyond individual provider actions of kindness, facility-level initiatives, driven or supported by managers, were also in place to overcome access barriers and threats to the health care contract. Some of these were consistent with national policies and approaches, such as the ongoing education and training of patients (always potential defaulters) and the implementation of policies aimed at improving quality of care and acceptable service delivery, for example improving the baby-friendliness of hospitals. Other strategies of patient retention were more directly reliant on the initiative and flexibility of senior staff and managers. For example, at one ART clinic where transport “used to be a problem” for many unemployed patients living in an impoverished area eight kilometres from the service, the facility manager arranged for use of an inter-clinic bus previously reserved for x-ray patients, as a way to cut out transport fees. Additional efforts to tackle obstacles included managers seeking donations of food parcels, growing vegetables for patients on site, hosting or partnering with non-governmental and community-based organisations, facilitating patient applications for disability grants, and using referral systems, social workers and counsellors to strengthen available social infrastructure and support.
Individual and institutional efforts were similarly described to manage and contain hostile or uncaring providers and an under-resourced working environment. These included the provision of regular in-service training aimed at imparting “professional values” to providers; constantly reallocating resources, such as linen, medical supplies and staff, between zones of crisis in a facility “we rob Peter to pay Paul” (female assistant manager, 61, maternal services, urban site 2); and encouraging formal and informal support between colleagues and across facilities:
This is a very stressful department. We don’t have formal debriefing [anymore because we ran out of funds]. If a staff member gets to a point with a patient where they just can’t take it, they go to the kitchen so that they can rest […] none of the staff should feel imprisoned. [We run our own debriefing sessions]. The doctor is a priest, so if the staff need to, they can talk to him on site (female programme manager, 50, ART services, urban site 2).
Providers also partook in small rituals, such as a daily morning prayer - typical at most facilities in the country – which seemed to encourage their sense of belonging and reinforce the vocational nature of their work (see also). Provider inclusion was similarly nurtured through informal but institutionalised involvement of staff in personal networks and lives of colleagues: gossip, baby showers, funerals, weddings, birthdays:
Observer 1: [The facility manager] calls for a meeting [to discuss three things outstanding from yesterday’s agenda]: birthdays, farewells and baby showers. They start with deciding what would be the right amount [for staff to contribute financially] R50 or R30 (US $5-3)? A heated debate ensues with some arguing that R50 is a lot of money […] put the matter to a vote again and then after a long time decide that R50 is the right amount. A question is asked about what to do on birthdays […] one staff member presents an example to say that what they did for Valentine’s Day was everyone contributed R5 for cakes.
Observer 2: This meeting is the most animated and involved I’ve seen the staff all day! (observation notes, ART services, urban site 2).