Interviewer(s): Interviewer
Interviewee(s): Respondent

Interviewer: So this is the date of 20th March, 2019 and we are seated here in the tea room of UHI talking to one health worker. You are welcome.

Respondent: Yes. Thank you. The tea room of UHI in the outpatient department.

Interviewer: Thank you so much. So basically we are going to have a conversation about what we have discussed and I request you to be frank with your answers as you share your opinions and there is no right or wrong answer; whatever you say is what we want to hear. And then your identity is going to be kept anonymous. Tell me a little bit about yourself; how old are you?

Respondent: I am 32 years old.

Interviewer: What are your qualifications?

Respondent: I graduated with MBCHB in January 2012 and since then I have been working in Uganda Heart Institute.

Interviewer: Those are six to seven years?

Respondent: Yes. I have been working in Uganda heart institute since October of 2012.

Interviewer: Those are six or more years.

Respondent: Yes, and I am currently pursuing my Master’s Degree in Internal Medicine.

Interviewer: okay. Actually you have answered my second question. It was how long ago were you qualified? So you have been here for 6 years. So when you look at the patients you are dealing with here or you dealt with in your practice, what are the common illnesses you see here?

Respondent: Hope it’s not a bit of bias because since I qualified I have been working in Heart Institute; I don't do private practice so most of the patients we see here are patients with heart problems.

Interviewer: Like which ones?

Respondent: The commonest in adults is hypertension which usually comes in with co- morbidities like diabetes, then we see rheumatic heart disease, pulmonary embolism, we see patients with myocardial infarction, and commonly patients come here when they are in heart failure and there are various causes of heart failure, a few of which I have mentioned.

Interviewer: So when you look at the demographics, are they the old, young? Are they male or female?

Respondent: Okay the demographics; the ages is that we see all ages here. But maybe what I can say concerning diseases like hypertension is that most of the patients are quite aged about 50 years. And maybe the ones of Rheumatic Heart Disease all the age brackets are there but commonly maybe between 15-50 years, although there are those who are above 50 years but still come with Rheumatic heart disease.

Interviewer: Good. And then, let's look at your training in RHD; have you received any specific training during school?

Respondent: like specifically a training on RHD?

Interviewer: Yes

Respondent: No.

Interviewer: How about in school, did they talk about RHD?

Respondent: Of course in school there are tutorials, there are lectures, you have combined group discussions about the various topics and of which, one is RHD.

Interviewer: And then after graduation, have you had any specific training in RHD management and care?

Respondent: No.

Interviewer: Do you think you need one?

Respondent: It would be very important you have one maybe in form of frequent CMEs and going to people to train you. It could be very helpful because many patients have the disease.

Interviewer: So which specific areas would you want to be trained in?

Respondent: I think it would be important to do the preventive bit.

Interviewer: Preventive bits.

Respondent: Yeah. Or catch it early, manage whatever they have to avoid the complications.

Interviewer: So umm, in a day, typically how many patients do you have?

Respondent: That depends because there is the outpatient department and the inpatient department. So if you are in outpatient, maybe an average you can see 13-15 but there are days when they are as few as 10 and some days when they are as many as 25.

Interviewer: in a?

Respondent: In a day, in out-patients! Then on the ward (in-patients), maybe in a week they could be 3, 4 or 7. I have not really taken kin interest in the inpatient units to know how many could be there.

Interviewer: So you have more out-patients than in-patients?

Respondent: Yes.

Interviewer: So what is your understanding on the causes of RHD? What were you taught about it?

Respondent: RHD is Rheumatic Heart Disease and this occurs as a complication of Acute Rheumatic Fever, and Acute Rheumatic Fever usually follows someone who has had a sore throat or pharyngitis which is commonly caused by a bacterial infection, and the type which causes that is a Group A streptococci.

Interviewer: Are you aware of the link between a sore throat and RHD?

Respondent: Yes, of course most of these patients may not recall because the RHD comes in years later, but there is a link; you have a sore throat then followed by rheumatic fever and then the rheumatic heart disease.

Interviewer: What were you taught can be done to prevent RHD?

Respondent: I think importantly is that once someone has a sore throat, treat it adequately with the right drugs and complete the treatment, and it would be good to follow up to see that they are getting better.

Interviewer: What were taught about the treatment of RHD?

Respondent: The treatment of RHD.

Interviewer: Yes, the treatment.

Respondent: In RHD you have permanent damage to the valves, though some people can get recurrent infections and they get like a Carditis where all the hearts layers, the muscles, are affected. So it depends, but usually patients are given drugs to help with the functioning of the heart and there are very many groups of drugs that can be given. Maybe I could say that the anti- failure drugs, then there are those who have, as a result of damage to the heart, some of them can form clots so you can give anticoagulation or if they have arrhythmia issues which can predispose them to form clots, you give them anticoagulation.

Interviewer: Okay.

Respondent: and maybe importantly to note is that if these patients are on drugs and they are taking their drugs as prescribed they would be stable but it’s also good to looked out for other factors which can keep precipitating them into getting heart failures.

Interviewer: Okay, so what is your understanding about the long term prognosis of RHD?

Respondent: long term prognosis?

Interviewer: Yes.

Respondent: I think this depends on how these patients are managed; if given the right treatment, the right doses and they are keeping the follow ups I think they can be ... and depending on how severe the valves are damaged, they can last for some time. I will not put a year to it or months or anything, but I think with appropriate treatment they can survive for some time. The point is that if they have severe disease and they are having frequent admissions for heart failure and also if they qualify to be operated. If they are operated, many patients here have been operated and they are stable; they are living normal lives.

Interviewer: So tell me about your encounters with RHD patients; do you recall the last patient you saw with RHD?

Respondent: [laughs] Of course, I have just seen one.

Interviewer: Can you summarize how s/he was?

Respondent: The last one was stable; her disease isn't major. She has had surgery, she has been coming for follow ups, she is taking her drugs to the dot and she is stable. The only thing that she does is to keep checking in the INR to see that, you know one of the drugs we give is the Warfarin's, so we have to check to see that it is within the required therapeutic range.

Interviewer: Did she have any complaints today?

Respondent: she told me that she has just come in for review because they told her she had to come back for a follow up.

Interviewer: Wow! Okay, and then um, when you look at the average age of RHD patients, who are they?

Respondent: Average age!

Interviewer: Yes.

Respondent: Maybe I would say 25 years, but there are those extreme ages that I have seen here.

Interviewer: But most of them are how old?

Respondent: 25 to 30 years; many are there.

Interviewer: So are they working or not?

Respondent: Some are working, some are ... I don’t know, but maybe they feel sorry for themselves and they don't work because some of them you see that they are stable, and can do something but they tell you “I am not working.” However, majority are working and some are at school.

Interviewer: Do you think that they know the link between sore throat, ARF and RHD? Do they know that those three are ... ?

Respondent: I have not taken that kin interest to find out from them, but I would think that those who have got some bit of education, on the initial encounters they had, they must have been informed about it but I don't know if they can recall.

Interviewer: So the initial visits, do they come with that prior knowledge that probably this ... ?

Respondent: No, we just give them the information.

Interviewer: okay. What sort of symptoms do they usually describe when they come especially for those first visits?

Respondent: For the first visits, some of them may complain of a sore throat, some of them may complain of joint pain or chest pain, and some of them come in with heart failure symptoms and they are diagnosed when they are in heart failure. Like that's their first encounter, they are very sick, they do the tests and they find out that they have RHD.

Interviewer: Okay. When you look at their follow up and adherence, what do you have to say about it?

Respondent: Here where I work, follow up and adherence is very good.

Interviewer: It’s good?

Respondent: Yes, it is very good. Of course I wouldn't say its 100% because there are always those few whom you would explain to “take this and this, like this” and then they come back and tell you something totally different, but at least on average it’s good.

Interviewer: What makes it good?

Respondent: I think what makes them adhere to treatment is, I think it comes from the health workers; if you talk to someone and they understand their disease and the importance of the drugs, and also possible side effects which could come in. Because, they might stop because of the side effects which you could have not told them at the beginning, so if they know about the disease and you tell them why you are giving them the drugs, adherence would be good.

Interviewer: Do you have some who are just not adherent?

Respondent: Those who do not adhere, um, those who don’t adhere, usually those incidences come in some of course in in-patients and some in-outpatients but it occurs like if you have given them 4 drugs and like the 2 of them are off. So they tell you that “drugs went off, I couldn't come back, or transport issues and you gave me drugs when there were a few days left to come back for review and I couldn't buy drugs.” So basically like that.

Interviewer: So its transport ...

Respondent: Yes, transport, and some of them say that where they live, the drugs given here are not there.

Interviewer: okay. And then um, have you had an experience where by you prescribed and the patient didn't get the drugs and they have to go away without RHD drugs?

Respondent: That maybe be hard to say because in the consultation rooms usually when you prescribe, you direct them to the pharmacy and tell them “there is this pharmacy and there are drugs for free and there is this pharmacy for buying. ” So when they get out, you may not be able to follow up. But most of them come back and they tell you “I have been taking my drugs” so most probably they got their drugs but not sure if they got their drugs from here or outside.

Interviewer: Okay. What sort of barriers do they commonly state to getting their care; you have talked about the transport ...

Respondent: Yeah, there is transport, social support, um ...

Interviewer: Okay. What else?

Respondent: those are the common things.

Interviewer: those are the common things because you have talked about drugs not being where they stay and then transport.

Respondent: Yes, finances are basically the common thing.

Interviewer: okay, and how about your care providers; what sort of barriers do you face?

Respondent: [laughs] Barriers in care!

Interviewer: Yes. You know you want to treat your patients but you are limited.

Respondent: [laughs] let me just think through and see ... [thinking]. Would having more time with the patient be a barrier? I think it would be nice to have more time with the patients. You can explain to them and talk to them but sometimes if the patients are many and you have to see everyone, though they are not usually many but there are those particular days when they are.

Interviewer: You don't get enough time to really talk to all of them?

Respondent: Not on a daily basis but there are those few days.

Interviewer: Any other barrier?

Respondent: Personally, maybe that.

Interviewer: How about the time when you are giving treatment, are you limited by anything?

Respondent: Not really except for those few incidences where patients are allergic to the injection and then bad news happens, but not really. Because when you’re giving these drugs, you inform them the side effects and the interactions possible in the easiest language they can understand, though some things can't be translated in the language they understand. So when you tell them that “when you see this, come back immediately” although some of them might end up stopping the drugs and when they come back for review, they have not been on that particular drug which they think is causing them trouble.

Interviewer: um, so there are some explanations you give but you don't have the right simpler words to use when you are attending to them?

Respondent: Yeah that too.

Interviewer: Okay. And then let's look at the local health system barriers, we want to see which pieces are not working for you and why you think so?

Respondent: Sorry which what?

Interviewer: The local health system barriers, in this we have the administration, the... let's go one by one and you tell which one is not working for you and why? Let’s look at the administration here and at the district level; is it working for you in any way?

Respondent: I think they are.

Interviewer: Why do you think?

Respondent: although I might not talk much about the district level; it might be hard.

Interviewer: Okay.

Respondent: At least seeing these patients, there are particular people who see them and those people are present every day; patients get to be seen, prescribed drugs, they get their drugs and in case they have any questions, they get to ask.

Interviewer: So you are conformable with the administration here?

Respondent: Yes I am but maybe the only thing I see is that sometimes the patients wait for too long especially those who have to do blood tests like INR and those who have to do follow-up Echo's, sometimes they wait for long.

Interviewer: Like how many hours do they wait?

Respondent: Maybe 3 to 4 hours.

Interviewer: So how can we improve that?

Respondent: um, maybe they could put, anyway it might be challenging, but maybe they could put particular days for particular conditions and maybe these patients get to be reviewed the following day so that they don't spend much time here. But that would come with the financial implications on their pockets to come two days (twice).

Interviewer: So that's administration. How about funding for health care in general; how is it, is it working for you?

Respondent: Particularly for this?

Interviewer: Let's begin with general funding for health care.

Respondent: General funding for health care! Of course I would talk about the things I would want to use as I work on a patient. You would find that some, okay I have worked in a different setting; a government setting outside there, but sometimes you want to really attend to a patient but you can't attend to them unless you have things like gloves. You want to do a blood test and you don't have strips, like availability of, are they equipment or resources? Those things you must have to work on a patient; sometimes they are so limited.

Interviewer: How about here? How are the stocks?

Respondent: Here?

Interviewer: Yes.

Respondent: [sighs] the stock here are fairly Okay, but there are those days when you don't have like RBS strips those tinny things which would make work easier.

Interviewer: How about when it comes to RHD management, how do you look at the funding? How is the funding?

Respondent: Here in Heart Institute the funding is good and I would like to take the opportunity to thank whoever is out there funding these people, because many of these people are quite or really needy and they would not afford to even buy the drugs. We appreciate the support.

Interviewer: okay. How about elsewhere, how do you see the referral hospitals which are handling them?

Respondent: Referral hospitals, it’s troublesome! Because the patients referred here sometimes you find they have prescribed drugs but they are not on drugs because they are not there and they can't buy them. Once they reach here, you tell them that they will be registered under RHD, be seen for free, the drugs will be there ... So maybe it would be good if they have RHD centers.

Interviewer: Okay. Let’s look at the health workers’ numbers and qualifications; are they working for you?

Respondent: Yes they are working for me here.

Interviewer: why do you say so?

Respondent: At least every day there is a doctor to look at these patients and after that the pharmacist is there to give them the drugs, and after that there is a RHD nurse who writes down drugs to them and then they come back.

Interviewer: How about the numbers?

Respondent: The numbers of the health workers?

Interviewer: No, that one, you said that they are enough, but how about the number of patients that you as health workers see in a day. How are they?

Respondent: The numbers keep on fluctuating but on average, I think it is okay.

Interviewer: How about the medication! Let’s look at BPG, the anticoagulation drugs and heart failure drugs; how are the stocks?

Respondent: Here in general or?

Interviewer: Here

Respondent: The stock here is good.

Interviewer: okay. Any gaps?

Respondent: No.

Interviewer: No! How about the diagnostics especially the Echoes?

Respondent: They are Available.

Interviewer: Any gaps?

Respondent: What I would say would be the waiting time; other things on average are okay.

Interviewer: The waiting time! And then the way you keep your records; how does the health information flow? Is it working for you between the out-patients and the in-patients and the registries? What do you have to say about this?

Respondent: The RHD registry is working well; you are able to retrieve patients’ documents, you are also able to retrieve drugs, you are able to retrieve anything you want about the patients; there are contacts. Basically, it would be hard to look for someone with RHD and they are in the registry and anytime you want them you don’t get them.

Interviewer: So it is working well.

Respondent: Yes.

Interviewer: okay. How about the ARF registries, are they also inclusive?

Respondent: That one I am not so sure.

Interviewer: Okay, and then the guidelines and protocols; do you have the guidelines? What do you have to say about the RHD care guidelines and protocols? Do you have them in place? Are there guidelines and protocols in RHD here?

Respondent: Yeah, but it would be nice, of course you have the information and the exposure but maybe it would be nice for those rooms to have brief chats on it for people who don't know about it, even the patient's themselves can read about it and see that those are notes.

Interviewer: Do you have CME sessions here about RHD?

Respondent: The sessions are there but not often.

Interviewer: Not what?

Respondent: Often, because here they conduct themes every Friday, but they are not specific to RHD. So if the case of interest is RHD, then they can talk about RHD.

Interviewer: And are people given opportunity to go and attend?

Respondent: Everyone is welcome to attend.

Interviewer: Do they attend?

Respondent: The turn up is not usually good, [laughs] but everyone is allowed to attend.

Interviewer: What makes it a little bit low? What do you think?

Respondent: It’s usually Friday some people might be off, hmm! Then there are those people who just come late, but they announce; people get to know because they put a notice on the notice board. It is not that people just don't know.

Interviewer: People just choose not to come?

Respondent: Yeah for some reason's.

Interviewer: So from what we have mentioned; administration, funding, health care, medication, you said most of the pieces are working for you apart from funding ...

Respondent: ... waiting time.

Interviewer: And the waiting time. The numbers of health workers are working for you, at least there is a doctor!

Respondent: Yes.

Interviewer: You found the administration okay.

Respondent: Yes.

Interviewer: And the medication, right?

Respondent: Yes, but the emphasis would maybe be to have working units in regional referrals and other lower places. It would be good people would not have to travel that far to come here.

Interviewer: so apart from the local system, what else has motivated you to keep seeing these Patients?

Respondent: It’s good if you see someone that you are managing and they are improving. You feel rewarded, you feel better when the patient is feeling better.

Interviewer: okay. So generally, do you think these RHD patients get the care they need? When you think back, do they get the care they need?

Respondent: Medically they do, but via those who need surgery or those who have surgical disease, I think many are delayed. Still it goes back to finances for those who have to pay for the surgery because it’s costly, and then there is that other project in Salaam Center; I think they offered to operate on some people with RHD but they come and assess and I think people are put on the waiting list depending on how severe the condition they are in.

Interviewer: So tell me about the patient's safety and the quality of care concerns you have around here. Is it put into consideration? The quality of care the patients get, are there any concerns you have as a person working here?

Respondent: [sighs] the quality of care the patients get, I would say it is standard treatment that they get. Concerning the safety bit, I don't know; what exactly should I talk about safety? Is it record keeping, drug effects?

Interviewer: Safety can mean a lot, but first and fore most there are some deaths which occur because the patient was not well managed. Have you had such?

Respondent: Yes, in my short practice [chuckles], yeah, we get one or two.

Interviewer: Can you tell us what happened?

Respondent: I think this patient was on anticoagulation and then she got a subdural hematoma if I remember well, and there was a time lag between getting the Neurosurgeon, coming to work then the follow up and we ended up losing the patient. Though they had worked on the patient, there was a bit of time lag.

Interviewer: Any other you can remember?

Respondent: Any other? No.

Interviewer: okay. So if someone asked you “how is the quality of care of patients here? What would you say?

Respondent: On average, good.

Interviewer: On average good! Why not 100%? What is lacking?

Respondent: [laughs] it can't be 100%.

Interviewer: You think it can’t be?

Respondent: At the moment that is what I think.

Interviewer: So what do you think can be done in the future to shoot it to 100%?

Respondent: I think if you get people to specifically attend to these patients, um, given priorities when they are doing these investigations. Of course here Echo is done for free and consultation is free, but there are those other blood tests that they have to go for. If there is more funding for that, it would be good to go.

Interviewer: So this is the last one. Do you think patients are dying in communities without presenting to the hospital for proper treatment?

Respondent: There could be some. An example is of some boy who is on ward right now; he is 15 years old but he came in when he was all swollen, hardly breathing, coughing, very weak, and he had been in the village without coming to the hospital. The moment he came here, he was diagnosed with RHD; he started on treatment and he has bad disease. All his disease is severe and he would benefit from the surgery. But giving that example, I think there are some patients out there who may need help.

Interviewer: After talking to that patient, what could have led to the delay to come here?

Respondent: The mother is always saying “I don't have money. I don’t have money for even feeding, so where will I get money for treatment?” Yeah.

Interviewer: So what are the two most important things that the MOH can do to improve the outcomes? What are those things?

Respondent: I think first of all they should, like the way they sensitize for these other disease conditions, there should be people out there talking about how RHD comes in, the initial stages, people should seek health care and even people at the lowest health facilities should have an idea of how to diagnose and treat it appropriately in the government setting. In the government setting which is purely government, they should endeavor to have drugs, supplies and the tests should be done in those settings not necessarily in specific places or private settings.

Interviewer: Anything else as we finish?

Respondent: Just to appreciate the funders.

Interviewer: Okay, thank you very much for giving us your time and your opinions. These will help us to come up with programs to improve RHD arrangements. Thank you very much.