REACH Researching Equity in Access to Health Care Project Understanding and explaining Tuberculosis adherence: A challenge of Access and Patient and Provider Expectations V. Govender, VC Daries, D McIntyre HEU, UCT Funded by GHRI (Canada) September 2012 ASnA Conference University of Cape Town
Background TB burden in SA and in the Western Cape Challenge of patient adherence: Patient-related factors Provider-Patient relationship; and Service-delivery factors (complexity of treatment regime, staffing, drug availability etc)
This paper seeks to: Understand TB adherence through the lens of Access Access is defined as the degree of fit between the needs of TB patients and the health system, across dimensions of Availability; Affordability; and Acceptability
SETTING, DATA AND METHODS Study Setting Mitchells Plain sub-district Highly dense, unemployment, poverty, substance abuse, alcoholism, and violence TB incidence rate is 1,577/100,000 of the population Study Sites M Large, heavy TB patient load, predominantly black African patients L Small, smaller TB patient load, predominantly Coloured patients Study Participants doctor, TB nurse, DOTS co-ordinators, SDM 8 Patients Selection criteria: patient treatment experiences 5 men, 3 women Data Collection and Analysis Semi-structured in-depth interviews Thematic Analysis
Findings Factors affecting treatment adherence is presented from patient and provider perspectives Interactions amongst factors located in the Access-framework
Availability Location of clinics and access to transport Patients I just told them straight I can t come tomorrow I can t make it I can t walk every day so far and the same distance back, I can t [Mark, Facility L] I walk more then an hour where normally it took me an half an hour Every time I have to sit on the pavement to catch my breath...i only get my three pills then I have to walk back home [Mark, Facility L] [Patients walk] an hour, I think we are the only one that is close to them they have to be here everyday It impacts a lot [on adherence [TB sister, Facility M] It s a long way to come here but people are very sick...they are struggling sometimes they end up to come maybe after two days [DOTS co-ordinator, Facility M]
Availability Competing claims on time Patients I told them here that I won t be able to come here every morning to drink tablets because my boss will fire me. If they can send it to the sister in [alternate facility] then it would be better for me [Matthew, Facility L] They [providers] are negligent they let you sit long ay we went to the clinic eight o clock and we sat there till one o clock...matthew, Facility L]. TB has got lot of admin...i have to see to daily stats, I have to see to weekly stats, I have to see to monthly stats I must see to quarterly stats, that is being submitted That s a fulltime job...so if there could be someone who will specifically for the admin, it would make a big difference. [TB sister, Facility L]
Availability and community DOTS facilitating access? Patients At first they told me she [DOTS supporter] will be there at 3 o clock and I went there 3 o clock and they told me no after 6 and I came back to the clinic because I did not get my pills I had to wait for strength...they [clinic staff] said... she will be there at 7 o clock in the evening because she is working. I can t make it, it is dark that time and it is far and there is no way I can go there. [Mark, Facility L] I don t think I will last because the money is little, I have to find the other job I mean, we sacrifice for them, but the patient is R30 per month We just walk[to follow up on patients They don t even give us the boots, the rain coats, no, nothing They [patients] come to me every day, the others they started coming by 6am the others, because they are working until about 8 o clock ( at night). I don t open the door at 8 o clock because it is dangerous [Acting TB assistant, Facility M]
Affordability Context of poverty and unemployment Patients I can t help if I stay away for many days because I can t make it every day, I mean if I had taxi fare then I would have come here to the clinic as I think here are people who are getting grants that is why they can make it to come... On the 1 st day my mother went with me and after that my mother told me I must get my own way because she don t have money to give me to go every day to [the clinic]. It was R10.00 per day, every [Mark, Facility L] So many of them struggle to get to the clinics because they don t have money So, now here is a guy who has to pay for transport to get the TB clinic [be]cause soon that guy could be defaulting because he can t afford to go to the clinic everyday so financially that is the challenge [Doctor, Facility M]
Affordability Conflict between work and treatment Patients 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... That is why I look like some one who is taking treatment wrongly... 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. [Jama, Facility M] most of them are breadwinners, so the guy is working, so he has to provide food for the family..most of them are you know uneducated here in the community, so they get easily fired when they get sick, so you find many of them don t even disclose at work their TB there is this battle between work and treatment. ( Doctor, Facility M)
Affordability Poverty, food security and adherence Patients I started treatment; 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 they come back [vomit] when you have not eaten. [Jama, Facility M] Poverty [Patients] must have the right food to eat they short of job... as you see there is no job for the people even yesterday there is a one whose coming here they said to me, I can t come in the morning because I m very hungry [DOTS co-ordinator, Facility M]
Acceptability Expectations of being listened to and respected Patients I asked them why are you discharging me? They said no it is your month to be discharged I said what if the person does not feel well? And they said no you are being discharged because of your sputum... I am not educated so I don t understand English. I just looked and did not understand the sputum. I don t feel well, I said to them even if you don t feel well, you are well? They said here is your sputum it is fine. [Jama, Facility M] I said, Now who just said that rude language and they were all quiet and I said, I think it must be you [referring to a patient] and [said to her] Maybe you need to go somewhere else if you don t respect the work that we do and so every morning I spoke to them [patients], You know you need to appreciate the staff working here because they the few that is still left in the public health system [Sub-district manager]
Acceptability Expectation of provider empathy and scolding Patients Well the treatment is fine...but it is as if they don t listen when I talk to them. they know my circumstances. I am sleeping in a car and my mother doesn t care about me there is no way that I can get transport to here. They don t hear me I just get negative answers I just stayed away for 2 weeks and I went back and they scolded me and I explained to them that I am not working and I can t make it...they just said I will die [Matthew, Facility M] I m sure that there are those who default because of the sisters, they feel that the sisters are harsh. They [patient] say the sisters, we are scared of the sisters. [Doctor, Facility M]
Acceptability Expectations of competence and responsibility Patients: providers technical competence This one [doctor] said I must undress and he was standing far from me, he just look at me and write in the folder the way he acted I never liked it he does not come close to the person who is sick he stands far, he is not a doctor mos When you are sick sometimes the body is painful so you wish that the doctor could examine you; if he just stood there and look at you and write down maybe he will give you wrong tablets [Funeka, Facility M] Poverty : patients taking responsibility It was raining mos, they [patients] didn t come. Yesterday, we just go to them to recall them, Why you didn t come. They said It was raining, how can I go out, go the clinic, when it is raining? We said, But it is your health... [Acting Tb Assistant, Facility M]
Patients She encouraged me to go on with life she said it is just a disease that can be cured and she encouraged me to drink my pills, eat right and eat healthy she [Dots co-ordinator] 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 till I finished here I finished the 4 th August 2009 (Peter, Facility M) Acceptability Fulfilled expectations... Poverty I m their role model, because they like me... One of my patients was discharged 2 months back, gave me the fruits and tells me that he liked the way I treat him. I saw him last week, here, but he brought his brother to get tested for TB Even though I don t think I will last because the money is little but, I m not going to leave my people. Even if I get the other job somewhere, but I will be always be the DOTS at the community. [Acting TB assistant, Facility M]
Discussion TB treatment is a complex, dynamic phenomenon (Munro et al 2007) Poor adherence is the outcome of a complex interaction between: Patient-related (i.e. chronic poverty, unemployment and generally poor social support); Health system-related (i.e. staff shortages, poor employment conditions, complexity of treatment regiment) factors; and Social relations between Patients and Provider work environment and implications for provider motivation
Thank you! Collaborating Institutions Centre for Health Policy, University of the Witwatersrand Health Economics Unit, University of Cape Town McMaster Institute of Environment and Health; and Centre for Health Economics and Policy Analysis, McMaster University Additional collaborating partners in specific sites: Africa Centre for Health and Population Studies, University of KwaZulu-Natal; Rural AIDS and Development Action Research Programme, University of the Witwatersrand. Research team Principal Investigators: Helen Schneider (UWC), Di McIntyre (HEU), Stephen Birch (MIEH/CHEPA) & John Eyles (MIEH/CHEPA). Team members: CHP: Duane Blaauw, Bronwyn Harris, Pascalia Munyewende, Loveday Penn-Kekana RADAR: Mosa Moshabela HEU: Susan Cleary, Vanessa Daries, Sheetal Silal, Veloshnee Govender Africa Centre: Till Barnighausen, Natsayi Chimbindi MIEH/CHEPA: Jana Fried This work was carried out with support from the Global Health Research Initiative (GHRI), a collaborative research funding partnership of the Canadian Institutes of Health Research, the Canadian International Development Agency, Health Canada, the International Development Research Centre, and the Public Health Agency of Canada.