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

Interviewer: So you are welcome sir, thank you for giving us this opportunity to talk to you. Like we said we are going to share information; you will give us your views about some of the local barriers and enablers to RHD prevention and care. Umm, today is the ... for record purposes, today is the 15th and we are seated here in the senior nurses’ office in Lira hospital. So just tell me about yourself, how old are you sir?

Respondent: I am now forty three years old.

Interviewer: Can you tell me about your qualifications?

Respondent: I have a Diploma in Nursing.

Interviewer: Where did you train from?

Respondent: I trained from Mulago.

Interviewer: Okay. After the diploma you trained in Mulago, is there any other training you got?

Respondent: Not so quite; right now I am a student doing a Bachelors in Nursing.

Interviewer: Okay good to hear that. So where are you doing the bachelors from?

Respondent: Umm, from that international university in Kampala.

Interviewer: Okay, so when did you qualify as a...?

Respondent: As a nursing officer?

Interviewer: Yes.

Respondent: In 2007.

Interviewer: And how long have you been working in Lira hospital?

Respondent: It’s now five years

Interviewer: Okay can you tell me about the demographics of the patients in your practice; who are they? What age group? Are they women? People you have been seeing and the common illnesses.

Respondent: That cuts across because, you know for us in the nursing division, we keep rotating. Like, sometimes back I was in the children’s ward, and then in the surgical ward and right now am in the medicine ward.

Interviewer: But the biggest number of patients are typically what? Are they adults? Are they children? Are they male or female?

Respondent: They are almost equal but when we consider sex, it is more females than males.

Interviewer: What explains that?

Respondent: To my understanding and basing on my experience, you know ladies seek medical care earlier but men tend to remain behind.

Interviewer: Why do you think men tend to remain behind?

Respondent: To my understanding, okay what has been in practice, men have that tendency of denial. Until they are very sick, that is when they accept to go to the hospital but with ladies, the moment they feel any pain they rush to the hospital. Men instead have that tendency of denial until maybe when they are down, and that’s why when they are admitted they don’t even take long because they normally come at a late hour or stage.

Interviewer: So how can we help those men? How can we make things better?

Respondent: It’s not very easy but we just have to keep advocating. The few who come, we have to tell them the benefit of early treatment.

Interviewer: Okay thank you. And what are the common illnesses that you see here?

Respondent: In my unit in the ward here or in the hospital?

Interviewer: The hospital and the ones you have come in contact with.

Respondent: Okay. Let me just be specific to the unit now where I am working. Here we have malaria cases, hypertension, diabetes and some few Rheumatic Heart Disease but those ones basically associated with hypertension, and pneumonia and the rest are HIV related.

Interviewer: And then tell me about your training on RHD; Rheumatic Heart Disease. Have you received ant training?

Respondent: That one was way back in school but I’ve never got any refresher.

Interviewer: Okay, so since graduation you have not had any refresher courses in RHD?

Respondent: No, though I’ve been in contact or seeing patients but with that old knowledge from school.

Interviewer: Have you had any challenges in handling these patients given that you have not had any refresher courses on RHD?

Respondent: Umm, not so quite. You know in most cases these patients are seen by doctors and they write a prescription and the moment the prescription is made, I only implement the treatment.

Interviewer: Okay. Have you had any CMEs here about RHD?

Respondent: It has always been conducted but in most cases I didn’t attend, otherwise the CME about RHD had been conducted.

Interviewer: What could have been the reason you didn’t attend?

Respondent: Sometimes, like at the moment whenever ... since I started school, our CMEs are always on Thursday and Thursday is when I always travel to school. That’s one, and then two; sometimes I may be around on day duty and by the time the CME is going on, I have to cover the ward also.

Interviewer: I understand. So in a week, let start in a day; how many RHD patients do you see?

Respondent: In a day?

Interviewer: Yes.

Respondent: On average I can see one.

Interviewer: And in a month?

Respondent: In a month it can be three to five because those are cases ... you see, since we rely on admitted cases, and what I mean are those ones admitted on ward, on the ward we may have at least three to five, but it has never gone beyond five.

Interviewer: Okay. Then outpatient?

Respondent: For our patients I can’t explain.

Interviewer: And then if you look at the demographics of the RHD patients, where do they lie; males? Females? Adults? Children? Most of them are what?

Respondent: Mainly children, and to the best of my knowledge now that I surface with them here, I have seen females, but the younger ones and not the elderly.

Interviewer: So the ones you have seen most are mainly inpatients!

Respondent: Yes.

Interviewer: But if you compare them to the number of outpatients, which number is greater?

Respondent: I believe the number of outpatients is greater because most of the time when we discharge them, we tell them to come and attend OPD.

Interviewer: Now I am interested in what you have been told. What is your understanding of RHD? If you can use that logic you got at school.

Respondent: If I am to recall, Rheumatic Heart Disease is an acute heart disease that an infection which is caused by bacteria which basically affects the heart valves. That’s how I remember and I’ve forgotten the type of bacteria which causes that.

Interviewer: Are you aware of any link between sore throat and RHD? Are the two related?

Respondent: Exactly. When I recall, when a patient develops tonsillitis or sore throat then they do local tonsillectomy, definitely they can predispose or complicate to RHD.

Interviewer: And then, what were you told can be done to prevent RHD?

Respondent: One is; umm, seeking early medical treatment and then treating respiratory tract infections early. And the, umm ... that’s what I still remember.

Interviewer: Okay, you said people do local?

Respondent: Tonsillectomy.

Interviewer: Why is it like that? How come people first go for that before they come to the hospital?

Respondent: You know there is a local belief in the village, well it’s not a local belief but there are people in the village, these traditional healers. So because of the ... you know when we talk of tonsillitis, there’s that inflammation of the tonsil bed there, so the moment they see those white parts, there are people who tend to remove locally. In the village, they are specialized in that, so the moment one has difficulty in swallowing or has pain, they first go to them to consult and when they check, they remove the pus, and some of them improve much as those people do it locally. That is why we are talking about local tonsillectomy; they do it locally not even under any preventive precaution.

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

Respondent: The long-term prognosis of RHD! To my understanding, now that probably the heart valves are already involved, definitely it may not be very easy for the valve to recover its natural potency. That is what I just understand, because the valve is already damaged unless maybe when there is an optional way of making a transplant. So we just now keep controlling the complications.

Interviewer: Okay. Tell about your encounter with an RHD patient; do you recall the last patient you saw with RHD?

Respondent: Yes, I remember there was a young girl on ward here.

Interviewer: So tell me about that visit; how was she, what did she present with?

Respondent: The girl was feverish and actually presented with some elements of difficulty in breathing and she was also somehow emaciated. She was emaciated and would complain of easy fatigue, but she was able to walk but the moment she walks she would get fatigued, but she wasn’t gaining weight.

Interviewer: So how did you handle that patent on ward?

Respondent: It was the doctor who handled the patient but there was a time when the hemoglobin levels were reduced until we transfused, and I remember I have been giving some antibiotics and ... I don’t remember all.

Interviewer: Now, what is the average age of your RHD patents? You said you have mainly seen women and children, so under which age group?

Respondent: Below 12

Interviewer: And the women?

Respondent: Those whom I saw on ward here, they were old ... okay, umm women ... women [thinking], I remember there was one who was elderly but few of them are elderly; the majority I saw are younger ones.

Interviewer: When you look at them, are they working class?

Respondent: No, they are just from the village.

Interviewer: When you look at their profile, do you think they are learned? Do you think they went to school?

Respondent: umm, those who I encountered didn’t go to school. Maybe if they went, then they stopped at a lower level.

Interviewer: So do you think they are aware of the link between sore throat and RHD or Acute Rheumatic Fever? Do they know that association?

Respondent: They may not know it until maybe we organize something like a health talk. At the ward, we educate them; we tell them, but I also believe that from entry point, they might be ... Since they are now our clients, they keep coming so I believe that even at the entry point they are always told the causes or how this condition comes about. But for us at the ward, generally we gather these patients and talk to them in general; if we choose to maybe talk about RHD, we talk to all of them and even those with different conditions.

Interviewer: So how often do you talk to these patients on the ward?

Respondent: Umm, normally, okay I am the In-charge of this ward, so I normally, at least twice a week. After seeing a common conditions, or in most cases we talk about hygiene, but after seeing maybe common conditions, I share with them but briefly like for some ten to fifteen minutes.

Interviewer: So do the topics keep changing or they depend on the diseases that are common on the ward?

Respondent: I don’t have a schedule, but ideally I have to set the program, but I have to first see what disease is very common on the ward, and then I remind them about it. But basically as I said, it’s about preventive part of it, like the hygiene and malaria. So that one is the most common one.

Interviewer: Like if you looked back in the last 6 months, how many times did you talk about RHD and sore throat and the need to treat it?

Respondent: To be honest, I’ve never talked to them about that, about RHD. But with the issue of local tonsillectomy, I have talked about it. I have ever told them that the moment you discover any pain on swallowing, instead of going to those local people, come to the hospital. And if am to recall, you were asking about the last six months?

Interviewer: Yes

Respondent: No, I think I talked once.

Interviewer: So at what point do these patients come to the hospital? Let’s start with those with sore throat; when do they decide to go the hospital?

Respondent: After facing the challenge, after removing, okay they come with septicemia and some of them with already reduced HB, anemia and definitely we start them on antibiotics right away.

Interviewer: What kind of symptoms do RHD patients describe to you when they come?

Respondent: Sometimes that history of sore throat is there but they sometimes come when they are even treated and they experience evening fevers and some chest pain and some bit of difficulty in breathing and fatigue with tiredness.

Interviewer: Those are the symptoms that they usually describe?

Respondent: Yes, but that fever and the pain; some of them talk about the pain of the joints.

Interviewer: Okay, umm when you look at their follow-up and adherence, when you call them to come back for review, do they come back?

Respondent: umm, the challenge now, I think they have been coming because we only keep them on the ward when they are admitted. But because these people are there handling themselves, they just come and attend OPD and then they go back, but I always see them coming but right now we are handling those who are already admitted.

Interviewer: For those whom you have encountered, what’s your sense of their adherence to the treatment?

Respondent: Well, when we admit them they don’t take long. You see, we now consider as their disease now, so they come when they break down; when they are not in good condition. So after stabilizing from the ward, they normally go back home.

Interviewer: So what sort of barriers do they state getting care they need? What stops some of them from coming for care?

Respondent: umm, okay; maybe, I am just assuming, in a local setting when someone feels they have improved they relax to come back. This also applies to other disease conditions; whenever they feel better they relax coming back until again they break down.

Interviewer: What else do you think explains their failure to come for care that they need?

Respondent: Some of them operate from far and they may claim that there is no means of transport or that there is no one to bring them, like the young ones; they depend on the parents. Another thing is ... but those are the things.

Interviewer: Okay, and then umm, so those are the two things you think are hindering them from seeking treatment!

Respondent: I don’t whether, because finance is also another reason; sometimes when they do have money but that’s also linked with transport. And also staying here; staying in the hospital is also not very easy because they need to organize themselves to get some money to sustain themselves.

Interviewer: So for those who manage to come, what do you think really enables them to come and also adhere to treatment?

Respondent: Now, the issue is; it also depends on the how they perceive the information because when we are sending them home we will instruct them to come for follow-up and people who understand come. That is one, and two; they also understand the benefit of coming back for refill, so they also come because they believe that when they are treated they improve.

Interviewer: So understanding benefits and also the information you give!

Respondent: exactly.

Interviewer: Okay and then what else?

Respondent: umm

Interviewer: some come

Respondent: Yeah

Interviewer: So we really want to learn from those who come back; what motivates them?

Respondent: Like I said, because [clears throat] some come back because they want to improve. Actually they want to get cured.

Interviewer: Okay. And then, let’s look at the local health system barriers. We would like to which of these pieces we are going to talk about are working for you and why. If you look at the administration and the leadership in the district, how is it? Is it working or not?

Respondent: In relation to their care?

Interviewer: In relation to the treatment and the way you do your work here as health workers. Let’s look at the administration here, when you look at it, is it favorable? Is it helping you to do your work well?

Respondent: [laughs sarcastically] Yes, I could say yes.

Interviewer: Why? What makes you feel like it is working?

Respondent: Because whenever we make orders or requests, like in most cases the supplies, they are always available as far as patients’ care is concerned; and supplies and medicine.

Interviewer: So the medicines you have them! If you talk of the RHD medicines here, how is the supply?

Respondent: What our patients benefit from the hospital is just to treat the symptoms, the supply is there like antibiotics and the pain reliefs.

Interviewer: How about the leadership in the district, what do you say about it?

Respondent: That one I have very little to say.

Interviewer: We can bring it to the health leadership in the district; how is it?

Respondent: With that I have very little to say. There was a day I saw the mayor of the municipal who as just passing around asking, “How are you handling your patients?” He was friendly, so he just came and passed around the ward and was emphasizing, “Do you have drugs?” “how are your patients?” do you have any problem?” and then we just shared with them but I didn’t see any outcome or any promise, but at least since I came here, at least I saw them appearing once.

Interviewer: In five years?

Respondent: Yes, they may be coming here when I am not around because we also rotate duties.

Interviewer: Okay. When you look at funding for healthcare in general, what is your opinion about it? How do you look at it?

Respondent: The funding for healthcare, to me I think is very minimal because the supply is always inadequate and the medicines written, they normally buy the cheap ones but there are other expensive drugs that the government doesn’t send, and it’s us now to write for the patients to go and buy from the local pharmacy around?

Interviewer: So for the expensive ones, they are not given!

Respondent: Yes, I think because of the wider hand, they tend to just resort to those cheap drugs.

Interviewer: Okay, they only give the cheap ones.

Respondent: Yes.

Interviewer: Okay. And then, how about RHD funding in particular! What is your opinion about it?

Respondent: Since I am not directly in touch with the project, I don’t have anything to say about that except to us, like in government or on the ward, as I told you we just give what is available.

Interviewer: Okay. So when you tell them to go and buy the expensive drugs, what do you think happens?

Respondent: Some of them buy and some don’t; they say they don’t have the money. So that’s the challenge.

Interviewer: So how do they move on from there?

Respondent: That one is now very hard for us.

Interviewer: Now if you saw five patients and they are all referred to get expensive drugs, how many would afford to get the drugs from the pharmacy?

Respondent: They are buying.

Interviewer: They buy?

Respondent: Yes, like four out of five, I think four can buy. It’s a matter of telling them the benefit of the drug and like me in particular, I always encourage them. I would say, “Please, life is life and the moment you lose it, there is no where you can get. So you have animals at home and other things, you go sell like a goat so that you are able to buy the medicine because the government is unable to supply all that is necessary.” So when I, actually let me use the word ‘convincing’. When I convince them, they understand and go and buy.

Interviewer: Like typically, how much would someone spend if he has to go and buy the drugs in the pharmacy?

Respondent: For?

Interviewer: For maybe RHD drugs, like how much would they spend?

Respondent: I can’t specify that because it depends on the type of medicine prescribed.

Interviewer: On average?

Respondent: Some if they have been prescribed antibiotics that we don’t have, they can spend like 20,000UGX.

Interviewer: Okay. And then let’s look at the number of health workers and qualifications; if you look at the numbers in the hospital here, how are they?

Respondent: The health workers’ number is great but the challenge, you find that ... well the number is high but on ground they are few because some are on released for school and some have other outside programs, and some are in administrative, and [clears throat] there are others who are also due for retirement.

Interviewer: So now that they are few especially on ground, what are implications on these patients?

Respondent: The challenge is now workload and the patients are not accessing the quality service, because even right now I am here because the person who was supposed to cover duty has been taken to another unit. So I have to come work and give a hand because we don’t want the ward to remain without anyone. So the number is very low; others are leaving for school and others for their leave, like that.

Interviewer: And then when you look at the qualifications, how are they? Do they match with the need?

Respondent: To my understanding the qualification is okay except the challenge they are facing now is that some body may upgrade and get another qualification but they are not motivated or promoted. That is the challenge, but the qualification is there.

Interviewer: And then, do you have any RHD specialists around here?

Respondent: I don’t think so.

Interviewer: You don’t have?

Respondent: No.

Interviewer: And do you have any nurses that have been trained?

Respondent: No.

Interviewer: So how much time do these patients spend when they come for visits here, maybe like for follow-ups? Do you have any issues with attendance?

Respondent: When they just come for follow-up, they are just reviewed there and then since the number is not much, and then they go back. They don’t take long except if they are admitted; that’s when they are kept on ward and they take like three to five days.

Interviewer: So for medications like heart failure drugs and those things, you said you don’t know much about them! I know you said that most of the expensive drugs are not there, but do you have the diagnostics here, or maybe if you want to do ECHO Cardiograph for instance?

Respondent: That one is there.

Interviewer: You have it?

Respondent: Yes, we have it.

Interviewer: And do they access it free of charge, the patients?

Respondent: They do it freely.

Interviewer: Okay. If you look at heart failure drugs, how are the stocks here?

Respondent: umm, we have but not all.

Interviewer: Not all!

Respondent: Yes

Interviewer: Then DPG and anti-coagulation drugs, are they available?

Respondent: No.

Interviewer: No they are not?

Respondent: No.

Interviewer: Okay. When you look at the way you handle health information here, the medical records system, how is it? How are the registries? The outpatients, the inpatients and how are they integrated; how do you look at your medical records system, like the flow of information among the different departments?

Respondent: Yeah, it depends on the individual ward, like for us in the ward, okay for every new addition, every patient admitted is registered in the admission book and on discharge, and umm we also exit from the admission. Their files are kept in the registry

Interviewer: Okay. So just in case a patient who was seen like three months ago comes back and you need to refer to their file, is it easy to retrieve it?

Respondent: Yes, it’s easy because when they are going we just give them the discharge form and there is a number in the file which we normally write on the discharge form. So when they come with it, we just refer to the registry.

Interviewer: Any areas that need to be improved in your medical record system and the flow of health information?

Respondent: umm, maybe the challenge is, it is the same health workers who attend to the patients on the ward that are the ones who keep the records of the patients on the ward. If there is need, at least a records person has to be at least on the ward to help us. I think that would also help more because we are not very perfect in record keeping.

Interviewer: Okay, I get it. Now, umm do you think there’s a registry of RHD patients here and those who have Acute Rheumatic Fever? Have you ever come across that registry?

Respondent: It’s those people who normally handle them but for us in ward, we usually mix them with the rest of other patients. We don’t handle them separately.

Interviewer: So let’s look at the local health system enablers. Which pieces are working for you; administration, funding and the number of health workers? Where do you give a tick here? What has made you work easy here? What has worked for you?

Respondent: What has made our work easier?

Interviewer: Yes, what has made you do your work?

Respondent: Now being a civil servant, either you are recruited or employed, we are mandated to fulfill our duty. We are guided by our roster; we make our roster and keep following it.

Interviewer: So do you have any guidelines and protocols on RHD care?

Respondent: No.

Interviewer: And do you have any referral path that if you get an RHD patient this how you refer them and this is where they are referred to? Do you have any in place?

Respondent: umm, let me not lie there; we only see, because we have a doctor on the ward, so we sit and discuss but we have never got any serious complication that made us to refer.

Interviewer: Let me look at the administration; is it working for you? Is it favoring you to do your work well here?

Respondent: Fairy well?

Interviewer: Funding?

Respondent: No. For us now, like when the month ends and we get our salary, we feel like we are being motivated but on ground, there’s nothing; we only rely on the salary.

Interviewer: So for the health workers you said the numbers are quite few!

Respondent: The number is few.

Interviewer: Medication, you said?

Respondent: It’s normally inadequate.

Interviewer: Then the medical record system?

Respondent: They are trying but people are also struggling with them on the ward here; keeping a record on the ward, and I was looking if they can also ... but we are doing it.

Interviewer: So for you, what has motivated you? At least you get your salary at the end of the month!

Respondent: Yeah.

Interviewer: And then in your training you are obligated to do your work!

Respondent: Exactly

Interviewer: Anything else?

Respondent: I love my work.

Interviewer: Generally, do you think patients get the care they need here?

Respondent: Not all because there are other whom ... when I was telling you about shortage of drugs, when you write for them to go and buy and they don’t have money, they feel like they are not cared for. They feel that the hospital is not working on them and yet we just don’t have.

Interviewer: How about those who need surgery, do they get the care they need here?

Respondent: Yes.

Interviewer: They do?

Respondent: Yes.

Interviewer: Now like RHD patients who need surgery, do they get the care here?

Respondent: No. there’s no ...

Interviewer: Now what do you in case they need surgery?

Respondent: Patients with RHD here, I think they are referred to Mulago.

Interviewer: How do you look at the patient’s safety and quality of care they get here? Any concern?

Respondent: The patients’ safety, I think it’s okay.

Interviewer: And the quality of care they get?

Respondent: That one is not to the maximum because, you see much as we are caring for them, but we are again requesting them to buy drugs. That means the quality is not adequate because we don’t have other supplies which we request them to buy at their expense.

Interviewer: Have you witnessed any preventable death here in hospital? You look and you say surely this shouldn’t have happened but it has happened.

Respondent: No I’ve never seen.

Interviewer: You have not seen any death were you say you we could have done this? Maybe a constraint?

Respondent: No, I have never seen.

Interviewer: Okay do you think there are patients who are dying in the community without coming for care?

Respondent: Yes. That’s because of ignorance and some people believe in prayers, some people believe in local medicine. They are still there though not many.

Interviewer: So in your opinion, what are the two most important things Ministry of Health could do to improve the outcomes in our patients? What can they do?

Respondent: To improve outcomes!

Interviewer: Yes, of the patients such that instead of death we see people recovering.

Respondent: In first place those who are working should be motivated in form of allowances and the rest of it. Then they should also recruit more health workers, and then adequate supply of the medicine. That can really improve very well, and then advocate the mobilization of community about health seeking behaviors.

Interviewer: And then, before we stop, for RHD in particular, what do you think they should do to improve the outcome in RHD patients?

Respondent: Okay, for RHD, to me I would ... because now we see how it’s being managed by the project, so I would expect it to be integrated. They could restart with the medicine, you know, if we can get a refresher knowledge on management and the supply of drugs specifically for such conditions. If the supply is adequate and with knowledge, I think they will really pick up or improve very well, it should be sustained.

Interviewer: Okay. Anything before we stop?

Respondent: No. I think that’s all.

Interviewer: Thank you so much for giving us this time and this great information which we shall use to make sure that we improve the health outcomes of our RHD patients.

Respondent: You are welcome.