Introduction
Methods
Research design
Study setting and recruitment
Data Collection
Participant category | Number of participants | Type of data collection | Number of interviews |
---|---|---|---|
Patients | 10 | Individual interviews | 19 |
HCWs | 15 | ||
Nurses | 4 | FGDs | 1 |
3 | FGDs | 1 | |
Doctors | 2 | Individual interviews | 2 |
Social workers | 2 | Individual interviews | 2 |
TB counsellors | 4 | Individual interviews | 4 |
Families | 6 | Individual interviews | 6 |
Total | 31 | 35 |
Trustworthiness
Data analysis
Results
Patient demographics and clinic attendance
Patients Pseudonym | Sex | Age | Highest education completed | First Language | Marital Status | Children | Employed |
---|---|---|---|---|---|---|---|
Aphiwe | M | 26 | Grade 10 | IsiXhosa | Single | No | No |
Babalwa | F | 29 | Grade 11 | IsiXhosa | Single | Yes (2) | Yes (Photographer) |
Bianca | F | 28 | Grade 7 | Afrikaans | Single | Yes (2) | No |
Buhle | F | 29 | Grade 12 | IsiXhosa | Married | No | No |
Fezeka | F | 49 | Grade 7 | IsiXhosa | Single | Yes (3) | Yes (Domestic Worker) |
Nandipha | F | 30 | Grade 12 | IsiXhosa | Single | Yes (1) | Yes (Baker) |
Ndiliswa | F | 43 | Grade 11 | IsiXhosa | Married | Yes (4) | No |
Thandiwe | F | 42 | Grade 11 | IsiXhosa | Single | Yes (1) | No |
Themba | M | 29 | Grade 11 | IsiXhosa | Single | Yes (2) | No |
Zintle | F | 29 | Tertiary | IsiXhosa | Single | Yes (1) | No |
Categories | Themes | Sub-themes |
---|---|---|
Patients’ socio-economic circumstances | Family relationships, support and personal motivation | |
Inadequate income and request for disability grant | ||
Patients’ agency among structural problems | ||
Health system challenges | Inadequate linkage between the clinic and the hospital | Inadequate communication between the hospitals and the clinics |
Inconsistent provision of medication before discharge and inadequate TB education at clinics | ||
Negative emotions | Scared and confused when accessing care | |
Feeling embarrassed at clinics |
Patient’s Pseudonym | Hospital referred from | Referral clinic and location | Attendance at clinic after dischargea | Stopped attendance (between 4 – 20 weeks) | Attended till completion of treatment | Completed treatment |
---|---|---|---|---|---|---|
Aphiwe | Hospital 1 | Clinic 1 & Clinic 4 Khayelitsha | Yes | Yes | No | No |
Babalwa | Hospital 2 | Clinic 3 –Khayelitsha | Yes | No | Yes | Yes |
Bianca | Hospital 1 | Clinic 6b | No | N/A | N/A | N/A |
Buhle | Hospital 1 | Clinic 5 –Khayelitsha | Yes | No | Yes | Yes |
Fezeka | Hospital 1 | Clinic 2-Khayelitsha | Yes | Yes | No | No |
Nandipha | Hospital 1 | Clinic 1 – Delft | Yes | No | Yes | Yes |
Ndiliswa | Hospital 1 | Clinic 2 & Clinic 3–Khayelitsha | Yes | Yes | No | No |
Thandiwe | Hospital 2 | Clinic 2 –Khayelitsha | Yes | Yes | No | No |
Themba | Hospital 2 | Clinic 3 –Khayelitsha | Yes | No | Yes | Yes |
Zintle | Hospital 2 | Clinic 5 –Khayelitsha | Yes | No | Yes | Yes |
Patients’ socio-economic circumstances
Family relationships, support and personal motivation
Cheryl: It was only on Friday when they [Bianca’s aunt] came … I don’t have contact with my daughter. She is not part of my life anymore because they are grown-ups, they are adults. It is just now when she came. [Cheryl explained this in an unpleasant tone]. Friday was when she came here. Now you understand my inconvenience?
Idriss: You mentioned certain things over the phone – could you clarify some of them for me? Firstly, do you think this [her home] is a good place for Bianca to be treated?
Cheryl: No.Idriss: Did you try and speak to a family member?
Cheryl: Because, number one, it is a bachelor flat. It is only supposed to be for one or two people, but now she is here it makes it very … [could not find the words]. I have to keep her here and look after her and I am at work…So that is the inconvenience, and I know with TB you have to have a lot of breathing space. You can see here; it is not much. And at night I cannot sleep with my windows like this. So all in all, it is very inconveniencing. And my personal life, it is being affected….So that is putting a bit of strain on my personal life also.
Thandiwe: Hey Idriss, I don’t want to cry [she started crying anyway]. I was too stressed I guess, because my uncle who was living here came inside here at home and he was the one who was abusing me and everything from an early age. He was the one who made me sick. He is my grandmother’s last-born son. And when he is here I am not motivated to do anything. You know I am sorry to say this, but I hate him so much because I won’t be in this position if it wasn’t for him, but now that he’s left I am just trying to scram my life back together again…I have not been feeling well lately. I have not been going to the clinic either.Idriss: Did you try and speak to a family member?
Thandiwe: My grandma knows everything, but you know how old people are. She said, ‘Why didn’t you say anything sooner?’ Because I had to break it to her that I was taking ARVs also … because all these years I have been telling my grandma that I was taking medication for low blood sugar [Thandiwe was referring to her ARV treatment].
Buhle: Yes, a lot of support.Idriss: In what ways?
Buhle: Most of the time my sister comes. As I tell you, my mother is very sick. They didn’t come. They came with everything that I want; food they gave me if I want, money, if I want. They gave me food at times at work, also my husband supports me, but this week he is on night [night shift].Idriss: Does this help motivate you to go the clinic and take your medication?
Buhle: Yes, but again I see many things that happened to people not taking their drugs. And then I told myself, if I take my drugs, I will be better. That is my main motivation.
Thandi: We all give her hope that she will get healthy again and to encourage her to take the medication.
Saki: I will ask whether he has taken his medication and he will start scratching his head. And he would say, ‘No I didn’t take it’. And I will make sure that he wakes up and go and take his medication”.
Inadequate income and request for disability grant
Funeka: Most of our clients are wanting disability grant because they don’t have food in the house or they were working somewhere else. They cannot come to the clinic because they need to look for work and see how much money they can get for the day to buy food or they work somewhere else where they can’t come back immediately, like on a farm or something like that.
Akhona: For the others, the problem is an ID issue. Some will be committed to their treatment but the problem is the ID. And they felt that they would stop taking medication because they don’t have food. But if they had the IDs they would benefit to apply for grants.
Patients’ agency among structural problems
Cebisa: I think everything starts from each and every individual because you know what you want to achieve in life. You know you have got goals because those who are coming, they will say ‘I have to come because I have small babies at home. Then I must look after my children so I cannot manage to be sick or die while there is help’. And then the support they are getting from home.
Khanyi: Sometimes alcoholics, kids on “tik”, we will keep it DOTS and we will try on a weekly basis, it depends. It is the unreliable patients we don’t get on that monthly system, but we try to get working patients on it as quickly as possible, and any patient that we think is reliable will go on to monthly treatment.
Health system challenges
Inadequate linkage between the clinic and hospital
Thami: He’s [the patient] got his letter, we basically see whatever is written on the letter and we just take it from there. If he’s started on TB treatment we just continue with all the detail. We open the TB folder, we get all his contact details, we just continue. If he needs to start, he will start with us. The letters are not always very clear. Sometimes you don’t know when the patient really started on TB treatment…there is no telephone number or contact number that we can contact this person or address is not even on it, or it is not clear, it is not the right address.
Ntombi: Sometimes the clients start their treatment from different hospitals, but normally for us it is [Hospital 2]. Then they come with the letter. They come to the TB room. We do all the observations, and then we send the client to the doctor. So all those clients are being managed by the doctors. It depends, some of them is normal TB like … GeneXpert or smear, but the first day the patient must first go to the doctor
Dr Lina: From the doctor’s point of view, the information that we get from Hospital 2 is of a good quality when they are typed. Sometimes in the Emergency room, we get handwritten, very brief letters. I assume that they are very busy, but a lot of those are very inadequate, particularly with the MDR patients, we can often get wrong medications because again, many, many doctors, most doctors don’t know much about MDR-TB and we occasionally get people with just small mistakes, people with minor problems and they have not adjusted the medication …I think it is one of the challenges that most doctors and nurses have. If they haven’t worked in the TB clinic they are fairly clueless … then a patient will default because between us and the hospital, they didn’t really understand they had TB and so they would take whatever treatment they have got in hospital and we would never see them. So there is no safety net in that sense. If the patient doesn’t come himself, there is no safety net.
Dr Lina: Now the patient is coming more than a one month later and you say, ‘Why didn’t you come straight from the hospital’ and he will say, ‘No, I was given a month’s treatment’, which is not good for somebody who’s just been diagnosed with TB – that is not good.
Dr Lina: I think with the clinics themselves we are doing as much as we can. We are doing three counselling sessions. We are calling in relatives, community health workers are doing home visits, etc. I don’t think you can expect a busy emergency centre [at the hospital] to be doing counselling. I just don’t think so, we just need that safety net. We need to be doing that. I agree with them that the major counselling should be done here….
Kethiwe: We do give education. … there are cases that the client come to us, the counsellors, but you can see that this client doesn’t understand what is going on, then you will give education, but you will see the client doesn’t know what is going on.
Negative emotions
Scared and confused when accessing care
Fezeka: Yes, I do. If you do not take it, the TB will come back. I get more support from the hospital….Because always the nurses [at the clinic] will give me the tablets and everything and say you must eat now and take the tablets. The tablets caused the death of my daughter.
Fezeka: Another doctor take me to another clinic by [Hospital 2]. And they told me that my liver is damaged. I told my brother. He was so upset, I was also upset. He wanted to go to the doctor [at Clinic 3] asking why he gave me the tablet because my liver was damaged. I am scared. I am so scared.Idriss: What did you do after this?
Fezeka: I stopped going there [at the clinic], and stopped taking the drugs at some point. [Fezeka did not explain the exact time that she stopped taking the treatment, but it was between four to 20 weeks because we conducted the last set of interviews in the fifth month of her treatment].
Idriss: Did you stop going to the clinic to receive the drugs at that time you were scared?Fezeka: Yes. I went to that doctor on Monday and asked him, why didn’t you tell me that my liver was damaged? He said, no, it was not me, it was the nurse who gave you the tablets. Why didn’t you tell me?
Phumi: Sometimes the patient hides the information from the family … she stopped taking the medication. She thinks she is feeling well now and she can stop taking her medication.
Aphiwe: I have not been feeling well. I stopped taking the treatment
Aphiwe: The doctor that I met [in Hospital 2] did not tell me, but at [Clinic 4) I did ask them, ‘Doctor, which TB are you treating?’ She told me that it was a normal TB. As the time goes after they discharge me there [Hospital 2] I came back again for the treatment [at Clinic 4], now the story changed they told me that it is a TB that is close to MDR, but it is not MDR. That is where I started to be confused. They are giving me another treatment {at the clinic]. They are giving me another one. So, I don’t know … I am confused.
Feeling embarrassed at clinics
Idriss: How do you feel when that [being embarrassed] happens?Ndisliswa: I didn’t actually go to the clinic as soon as possible, but when I got there, yoh, those nurses were shouting ‘Why don’t you go to that clinic?’ I told them that a lot of people in my area are going to that clinic. You know how stigma can stay with someone and I don’t like people talking about me, saying she is also taking ARVs and … I mean that also makes you lose your concentration on what you are trying to do, but they said, ‘No you cannot come here’, but I said ’What is wrong in asking for assistance in healthcare? I mean, you can go anywhere and get healthcare, why can’t I come here?Idriss: what happened afterwards?
Ndiliswa: I had to stop because there is no taxi there. So you have to practically walk and my legs are still not fit enough, even when I walk long distances, I have to rest in-between, but when you go to [Clinic 3] it is like five minutes’ walk.’ You catch a taxi. Why don’t you go there?’ they were shouting. So that doctor wrote a letter to another doctor, and then she said she doesn’t have a problem because she has treated me before. And there you just get your tablets … they [nurses at Clinic 3] can really break somebody’s spirit, honestly.
Thandi: If the clinics could have a proper care for the patients, even the patients themselves could have a way of getting help because of the care that he gets from the clinic. And that will make him go frequently to his appointment. The care is the major part at the clinic. They are not doing enough …They shout at patients and they get very impatient at times.