Jana Fried, PhD School of Geography & Earth Sciences, McMaster University

1. Access to Healthcare in the Townships: ART, TB treatment and delivery in South Africa John Eyles and Jana Fried Jana Fried, PhD School of Geography & Earth Sciences, McMaster University

2. South Africa – the health care context • Population: 47 million people • Average life expectancy: 50.5 years • Large, under-resourced public system, treating 80% of the population • Public health sector consumes 11% of total government budget

3. South Africa – the health care context • HIV prevalence (2005): • 11% of the population ≥ 2years • = 5.7 million people • incidence (2002): • 2.7%/year • AIDS death (2006): • over 600.000 deaths • 90% increase from 1997 Photo: Mujahid Safodien/PlusNews www.irinnews.org

4. South Africa – the health care context • ARV treatment sites (2005): 179 • (2007): 362 • people receiving ARVs (2007): 460.000 • numbers needing treatment (2007): 1.7 million (28% treatment coverage) ... Photo: Mujahid Safodien/PlusNews www.irinnews.org

5. South Africa – the health care context • TB rates (2007): • globally: 139/100.000 • in South Africa: 948/100.000 • – increase in all age groups (1996 – 2004) • Aggravating issues: • co-infection with HIV: • one third of TB-patients is HIV-positive • development of XDR-TB Photo: www.avert.org

6. South Africa – the health care context • Millenium Development Goal 5: • Improve maternal health • “In sub-Saharan Africa, a woman’s risk of dying from treatable or preventable complications of pregnancy and childbirth over the course of her lifetime is 1 in 22, compared to 1 in 7,300 in the developed regions.” • (Source: UN, 2008) Photos: www.avert.org (1), Mujahid Safodien/PlusNews www.irinnews.org (1)

7. South Africa – the health care context Source: UN, 2008

8. South Africa – maternal health • Maternal mortality rate: 400/ 100.000 life births (Canada: 7/ 100.000 life births) • Life-time risk of maternal death: 1 in 110 • (Canada: 1 in 11.000) Photos: www.avert.org (1), Mujahid Safodien/PlusNews www.irinnews.org (1)

9. South Africa – maternal health • Leading causes of death for 2002-04: • - non-pregnancy-related infections (37.8%), • hypertension (19.1%), • obstetric haemorrhage (13.4%), • pregnancy-related sepsis (8.3%), • pre-existing maternal disease (5.6%) and • early pregnancy losses, being abortion and ectopic • pregnancy (4.9%). • (Source: SA DoH, 2006)

10. Health care facilities in South Africa Photos: www.health-e.org (1), www.cdc.gov (1), Fried (2)

11. The REACH project • Three tracers • Four sites • Mitchells Plain • (Western Cape) • Region D • (Gauteng) • Hlabisa • (KwaZulu-Natal) • Bushbuckridge • (Mpumalanga)

12. The REACH project • Researching Equity in Access to Health Care

13. A narrative approach • “to be the (co)creators of storied knowledge(s) of health experiences”(Kearns 1996) • “the use of stories to understand the interpretation and response to illness” (Kleinman 1988) • “making sense of illness and health care in a ‘causal’ and ‘societal’ context”(Eyles and Donovan 1986) • “exploring how biomedical health care knowledge is incorporated in managing chronic illness” (Dyck 1995)

14. A narrative approach • “Narrative analysis forces attention first of all to what is places immediately before the researcher –stories –before transforming them into descriptions and theories (‘societal context’)”(Sandelowski 1991) • “Humans are immersed in narrative telling themselves virtually uninterrupted monologues” (Polkinghorne 1988)

15. The strength of narrative • Narration selects events and gives them coherence, meaning and direction. It provides therefore a type of ‘causal’ thinking to explain lives; it is historical understanding seeing things in retrospect; and it is moral theory used to justify events. BUT ...

16. Researchers become part of the story. What they desire affects the nature of the narrative itself ... • “There is a distinction between the events of a story and its telling in what is selected to be told and how it is later analyzed.”(Watson 2008)

17. Emerging themes Ambulances and other transport issues • “They are not very good, because even with us, even with our own ambulances, they are centred there (at the other hospital). Even when we are having an emergency, it will take time before they arrive. (...) You find it may even take an hour before they come. With the transportation, it is not very good.”(Senior nurse, Neo-natal ward)

18. Emerging themes Ambulances and other transport issues • “Usually, they hire their own transport. Those women that are maybe staying a bit far from the clinic, you find that they don't go for antenatal care. The woman only comes to the hospital when she is now in labour. So you find that they don't attend the antenatal care, because of the distance. The women around (meaning 'the area around the hospital') they usually don't attend the antenatal care. They only come to the hospital when they are in labour. That's the problem that we have around.” (Senior nurse, Labour ward) • “The transport is there. But you find that the woman does not have enough money to hire the transport.” (Nurse, Labour ward)

19. Emerging themes Other poverty related issues • “Some of the problems they are having, you find that some they are not having enough food. Because when you take TB treatment, you need to have enough food. It makes you to be hungry. That is an effect. So you find they don't have enough food. So that is another challenge that we are having, because some patients they don't verbalise it that they don't have food. They just stop taking the treatment. When you ask them, they tell you that the treatment makes them hungry.”(Professional nurse, TB ward)

20. Emerging themes Provider opinions on patients using the formal health care system • “I know this is much better. They (the patients) are now accepting that there are some complications, they should go to the hospital for delivery–especially for serious cases.” • “Otherwise, other mothers, even after delivery, we are giving them education how to take care of themselves and the babies. Most of them, they are coping (...).” • “We spent time with them. And, those that are not deeply rooted in their cultures, we win them. But there are others that are so deeply rooted that "if I don't do that, I am going to die." So, those ones it is very difficult to bring in.” (Senior Nurse, Neo-natal ward)

21. Emerging themes Provider opinions on patients using the formal health care system • “Ahh, there are still those who are still retained into their culture. But mostly these days, people have improved. They like coming to hospitals. Basically, now that it is free.Even the pregnant women are free. Even if you go to the clinic, it's free. You don't have to pay anything. People go to the clinics.” (Senior Staff Nurse, Labour ward) • “cold weather, a natural triage system. Separates out those with real pain.” (Doctor, Maternity ward)

22. Emerging themes Provider opinions on patients using the formal health care system • “There is a difference. Men usually they do take a long time to come to the clinic. Unlike women. Women they always come earlier. So men will wait for a long time until they are critically ill, it's then that they come to be treated for TB.” • “Yeah, (women) are used to the clinic. When they are pregnant, they come to the clinic. They come for family planning, for child weighing. Everything is done at the clinic, so they are used to that.” (Professional nurse, TB ward)

23. Emerging themes Attitudes towards traditional beliefs and cultural responses to illness • “But some, they just believe only in traditional healers. When they get sick, they go there and get some treatment. And others, when they got sick, many, they will first go to pharmacy, private doctors, before they come to the clinic. And it is so difficult too, from a private practitioner; it is so difficult to be tested for TB because it is so expensive. They usually don't have enough money for that. So they won't usually.” (Professional nurse, TB ward)

24. Emerging themes Attitudes towards traditional beliefs and cultural responses to illness • “Like maybe the mother is just delivered and she is having a problem like hypertension, maybe has lost the baby, then (...) you find that culture ... At home, they want the mother to be discharged so that they can do their own ritual, irrespective of the condition of the mother.” • “But when, you find, that somebody has lost (...) the baby, she is concentrated on the culture, that they should do this and this. She doesn't take care of themselves.” (Senior nurse, maternity ward)

25. Emerging themes Issues around Quality of Care –shortage of staff • “Yeah, there are some problematic areas. Like shortage of staff. Nowadays, that's a problem. (...) Actually, we should have our own nurses in the premature to always be there. Because prematures, they can stop breathing at any time. So you find that we don't have enough staff to always be there and take care of the babies, (...) to monitor the babies. So as I said, we are combined with the postnatal. So you find that, especially during the night, it is only a sister and two assistant nurses, for both wards.” (Senior nurse, neo-natal ward)

26. Emerging themes Issues around Quality of Care –shortage of staff • “Mmmhh, it 's not enough. It's not even enough. Everything is not enough. Ambulances, doctors, nurses, it's not enough. Like nowadays, we are taking people from around the whole village who are supposed to be delivered at the clinic, they come here. Those who are supposed to go to Tintswalo and Matekwane, they come here. And we are only two during the night. Two professional nurses for the whole night, delivering eight patients. It's not enough. And anything can happen at any time. (...) If there is a caesarean, she must go to the theatre to receive the birth. I am left alone here. So it is not enough.”(Senior Staff Nurse, labour ward)

27. Emerging themes Issues around Quality of Care –lack of equipment & infrastructure • “The problem that we are having is the equipment. If we can have equipment, that is basic, basic things, I think we can provide a good care.” (Senior nurse, labour ward) • “The issue of shortage of equipment and consumables was unheard of, unheard of. The fact that it’s here now it’s very scary, very scary. There were things that we didn’t know they could run short of but today they are short of them. It’s very scary. (…) Today, we are told there’s no cleaning equipment.”(Assistant Manager, surgical complex and gynae theatre)

28. Interpretation • Recognition by many providers of difficulties of patients accessing care • Yet providers make professional judgements of patients, often seeing them as ignorant and locked into potentially health-damaging traditional beliefs and practices • The provider usually privileges biomedical knowledge and praises patients who accept this way of knowing and being treated despite a lack of resources • The provider also sees this lack of resources as an impediment to their practice as care-givers, while funding limitations make them rushed, overworked and often dismissive of patient needs around treatment and death • Why this interpretation? More analyses are needed to confirm and/or modify before linking to professional training and societal context

29. Different Types of Access • Affordability • Acceptability • Availability

30. Next Steps • Interpretation of patient narratives • Combining accounts • Report back to decision-makers