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

Interviewer: Today is the 8th of November 2019 and we are seated here in the cardiology room at Mbarara Regional Referral Hospital and this is participant 005. So we use what, English?

Respondent: Yes.

Interviewer: Okay. Thanks for allowing to speak to us today and just to remind you a little bit, we want to determine how we can provide better care for our RHD patients. There are no right or wrong answers so be frank and share your opinions, and the data we gather is going to be confidential; we will not link your identity to any of your comments in any of the reports we produce. So please tell me about yourself; how old are you?

Respondent: I am 58 years old.

Interviewer: 58 years old. And what are your qualifications?

Respondent: I am a Senior Enrolled Nurse.

Interviewer: Where did train from?

Respondent: From Kabale school of nursing.

Interviewer: And how long ago did you train?

Respondent: For 2 years.

Interviewer: How long ago? Which year?

Respondent: I went there in 1979 and then I started working here in 1982.

Interviewer: And then, eh, 1982! Those are how many years?

Respondent: Many.

Interviewer: Okay, and then um, in your practice, when you look at the demographics of your patients, what are the common illnesses that you treat? What kind of patients have you been seeing over the years?

Respondent: I have been seeing diabetic patients, hypertensive patients, and cardiac patients.

Interviewer: Mainly, when you look at the sex, which patients do you see?

Respondent: Mainly females.

Interviewer: Why females?

Respondent: As you can see according to our ward, women are always many on their side than males.

Interviewer: And then the age groups, which ones do you normally see?

Respondent: From 50 years and above. Those that are diabetic, hypertensive patients, those with stroke and the young age, they are always ...

Interviewer: What are their illnesses, the young ones?

Respondent: HIV for most of them.

Interviewer: The children?

Respondent: Yes.

Interviewer: Okay thank you. Now, tell me a little bit on your training in RHD. Have you received any specific training during school?

Respondent: We trained in both, anyway we trained. They trained us in many conditions.

Interviewer: Was it part of it?

Respondent: Yes it was there.

Interviewer: Was it there? RHD?

Respondent: Yes, it was there also

Interviewer: Was it in school or after school?

Respondent: It was after school when I started seeing those patients with RHD.

Interviewer: You got trained!

Respondent: Yeah.

Interviewer: Who trained you?

Respondent: I was trained by, umm, he was called ...

Interviewer: He was a what?

Respondent: That was a principal tutor.

Interviewer: And where did you train from? Where exactly was your training?

Respondent: In Kabale hospital.

Interviewer: Okay. And then um, how often do you see RHD patients?

Respondent: These days?

Interviewer: Yeah

Respondent: Not often but sometimes they come.

Interviewer: How many can you see in a week?

Respondent: In a week, like 2.

Interviewer: 2 in a week! Are they usually outpatients or you see inpatients?

Respondent: In patients; they’re admitted and then we see them on the ward.

Interviewer: Now I am interested in what you have been taught about RHD. What do you understand to be the cause of RHD, in your own view?

Respondent: That one can be caused by very many things.

Interviewer: Like which ones?

Respondent: Like when a patient falls sick and doesn’t come immediately to the hospital to go for checkups.

Interviewer: Like when they have fallen sick, which disease would that be?

Respondent: Like malaria, like when someone is having chest pain, that body swelling, palpitations and difficulty in breathing.

Interviewer: Okay, and then, are you aware about the link between sore throat and Rheumatic Heart Disease? Are those 2 related?

Respondent: They are related.

Interviewer: How?

Respondent: Of course when somebody suffers from sore throat, at times you get what, um, that one can also bring difficulty in ... [inaudible].

Interviewer: What were you told can be done to prevent Rheumatic Heart Disease?

Respondent: Anyway, for that one you go for a checkup and the doctor is the one to decide what ...

Interviewer: What?

Respondent: What to do to the patient and what treatment you should be given.

Interviewer: Okay. What were you taught are the treatment options for RHD? Which are the different treatments of RHD were you taught?

Respondent: RHD, you know sometimes they come with that difficulty in breathing, body swelling, heart palpitations; that one we usually give. Like for body swelling, we usually treat with IV Lasix, we give digoxin tablets and they include antibiotics.

Interviewer: Okay. Apart from that kind of treatment is there options that is there?

Respondent: yes, they do some investigations like ECHO, ECG and chest x-ray at times.

Interviewer: Okay. So what is your understanding about the long term prognosis of RHD?

Respondent: It is like that the patient can get what ... those are patients who get cardiac ...

Interviewer: And then, tell me about your encounters with patients who had RHD? So the last one, you said each week you get like 2?

Respondent: Yes.

Interviewer: Okay. So when did you last see a patient with RHD?

Respondent: Was it last month?

Interviewer: That’s when you saw that patient!

Respondent: Yes, last month.

Interviewer: So briefly summarize the visit for that patient. How did that patient present? What was happening?

Respondent: Anyway the patient presented with body swelling, he had difficulty in breathing, heart palpitations, and he was restless ...

Interviewer: What happened when he came? How old was that patient?

Respondent: 19 years.

Interviewer: Boy/girl?

Respondent: A boy.

Interviewer: So what happened when that person came?

Respondent: When he came we started with investigations then after that...

Interviewer: So he had not been diagnosed already with RHD?

Respondent: Any way I asked the mother whether they have ever visited you here and they told me that she has been coming bringing that boy. Then until he was admitted on the ward.

Interviewer: Okay. So um, the RHD patients you see, what is the average age?

Respondent: Age? I have seen one of 16, 19 and 23 years of age.

Interviewer: Those were the ages?

Respondent: Yes.

Interviewer: Are they in school or out of school?

Respondent: That one whom I saw was in school.

Interviewer: Okay are they generally aware of the link between sore throat, Acute Rheumatic Fever and RHD? Do you think our patients know?

Respondent: They know only when they come here but when they are not yet here at the hospital, they don’t know what’s happening. For them they think its sore throat.

Interviewer: So you have told me the symptoms they usually describe to you, you said chest pains, joint pains ...

Respondent: Joint pain is also included.

Interviewer: Okay, and what else?

Respondent: Heart palpitations, body swelling.

Interviewer: Okay and then, are they good at follow-up and adherence? Do our patients come back for follow up?

Respondent: Yeah, they come.

Interviewer: All of them?

Respondent: Yes, they come. After discharge they give them a return date they come.

Interviewer: What motivates them to come?

Respondent: [scoffs] it’s the day which you have given them, so at the end they have to come back.

Interviewer: Because we have seen in some cases where people are given a day to come back but they still don’t come back.

Respondent: There are some people that don’t care but when you care about your health or your kid’s health, you have to come back for checkup.

Interviewer: Apart from not caring, which other reasons?

Respondent: Transport, money.

Interviewer: Is transport a lot for some of them?

Respondent: Some of them come from far districts like Lyantonde, Masaka, Kyengwegwa, and Kasese ...

Interviewer: They all come here?

Respondent: Yes, we have people from Kisoro, Kabale ...

Interviewer: Why do they come here?

Respondent: At times it a referral and this is a referral hospital. So they are referrals from that end.

Interviewer: Okay and then um, but the ones you see you said they come back usually!

Respondent: Yes they usually come back on the return date.

Interviewer: And the reason you have given for that answer is because you said the parents care.

Respondent: Yes, parents care; the mothers.

Interviewer: Apart from caring parents, what else could be a factor when they come back?

Respondent: They come back to see their doctors so that they do what ... when there medication which they were given is over, they have to come back for more.

Interviewer: Okay and then, have you seen some who were maybe given an appointment a month after getting the initial treatment and they come back after 4 months?

Respondent: Yeah they come.

Interviewer: After 4 months and yet they were a given a follow up of 1 month?

Respondent: For one month?

Interviewer: Yes.

Respondent: They come.

Interviewer: Now when they come back what do they tell you?

Respondent: Now what you do? They tell you reasons; “I didn’t have money for transport.” Transport majorly is the problem.

Interviewer: Transport is the problem!

Respondent: Yeah, but you have to treat them.

Interviewer: okay. How about adherence to drugs, do they adhere? There’s coming for follow up and getting the drugs but someone doesn’t take them.

Respondent: For those 4 months when the drugs are over, they remain like that.

Interviewer: How about those who come, I mean those who stick to their appointment; do they still adhere to the drugs that they are given?

Respondent: Yes.

Interviewer: What would motivate them to even come for the painful injection like some people say and take all the drugs that they are given?

Respondent: You want your health to do what, to be healthy and not to fall sick each and every time.

Interviewer: Okay. Now let’s look at the local health system barriers. I would like you to tell me the pieces that you feel are working for you among the ones I have on the list and those which are not working for you. Let’s begin with administration here, is it working for you in terms of your work with your patients?

Respondent: Yeah.

Interviewer: Yes?

Respondent: Yes, they do.

Interviewer: Why do you say yes? What makes you feel like “yeah!”

Respondent: At times some hospitals don’t have drugs, they complain about that and that, but for us here, drugs are on time and the moment they are over, they have gone for more drugs. The sundries.

Interviewer: Okay. How about the leadership in the district?

Respondent: Also the leadership, they are trying; we have no problem.

Interviewer: What do you feel like they have done for you? The leadership, DHOs how are they supporting you in your work?

Respondent: They are supporting us maybe in terms of ... they give us uniforms, and other resources.

Interviewer: Okay, thank you. Let’s look at the funding in general. How is it to you? Is it working for you?

Respondent: The funding is okay.

Interviewer: Why do you feel like its okay?

Respondent: You know sometime time back, they increased our salaries [laughs].

Interviewer: They increased?

Respondent: Yeah, that’s why I am saying it is okay. At least our salaries where increased.

Interviewer: Yes. How has that increment impacted on your work?

Respondent: when you have that motivation, you also have courage to work hard and look after your patients.

Interviewer: How about funding for RHD care, how is it here?

Respondent: For that one, huh! For that one I think it depends.

Interviewer: It depends on what?

Respondent: When somebody (patient) doesn’t have some resources, some doctors can do some funding and they help them in each and every one.

Interviewer: Let’s look at the health workers, how are the numbers? Are you working with them? Are the numbers and qualifications working for you?

Respondent: For numbers, as we have been talking we are really few.

Interviewer: Which cadres are really very few?

Respondent: The nurses are not many.

Interviewer: Are the doctors many?

Respondent: The doctors are many. They are there but for us the nurses, no.

Interviewer: You are very few!

Respondent: Very few!

Interviewer: Okay how about the qualifications! When you look at the staff, are they qualified for the work they are doing?

Respondent: Yes.

Interviewer: Do you have the different qualifications that you need in the hospital?

Respondent: Now which one?

Interviewer: Like when you have RHD patients, um, those who need surgery, can they access surgery here?

Respondent: Not here. They cannot.

Interviewer: Okay. So let’s look at the waiting time for our patients, how is it?

Respondent: For those with RHD?

Interviewer: Even the general patients. How much time do they spend? What do you have to say about the time they spend at the hospital when they come for treatment?

Respondent: Anyway, some of them they spend few days.

Interviewer: The outpatients?

Respondent: For the outpatients, you know they are many.

Interviewer: Is the time reasonable according to you?

Respondent: By the way time is reasonable because the doctors come early and see them. When you are supposed to go to the laboratory, you go there and when you are supposed to get medication from the pharmacy, you go and get it.

Interviewer: Okay. How about the quality of care, how do you look at it? The quality of care you give to your patients.

Respondent: It is enough because we are there for them each and every time. When you are on duty, you have to be with them until you leave. You start at 8am you leave at 2pm. At night you are with your patients and also in the evening.

Interviewer: So quality of care to you is okay?

Respondent: It is okay.

Interviewer: How about the medication? Let’s look at the medication for the, like the anti-coagulation, heart failure drugs, BPG, how are the stocks here? Are they available?

Respondent: Yeah they are available.

Interviewer: Any issues you have with the drugs? The stocks?

Respondent: They are available and when they are not available at times, we tell them to buy. But they are always available.

Interviewer: Okay, so those times you tell them to buy, do they get any problems with accessing those drugs? They don’t.

Respondent: The pharmacies are here.

Interviewer: How much do they pay for ... would you be knowing how much they pay? Like for an RHD patient who has been referred outside to go and buy some of the drugs?

Respondent: You mean at the drug shops?

Interviewer: Yes

Respondent: I have never asked them but most of them get the drugs from around.

Interviewer: How about the diagnostics, the ECHO Cardiography?

Respondent: That one is free.

Interviewer: It is free of charge! And you have it here?

Respondent: Yes, it is free.

Interviewer: Other diagnostics, any that you feel are missing?

Respondent: Chest x-ray.

Interviewer: Okay, and then let’s look at the health information and medical records systems in place. How are they when you look at them?

Respondent: The what?

Interviewer: Medical records system and health information system. Is it working well?

Respondent: Yes.

Interviewer: Why do you say it’s working well?

Respondent: When we admit the patients on the ward, then we have our ... where we admit our patients. Usually when they come from medical emergency, we have to register our patients and when they are discharged, we have to record them also to be discharged. Then after discharging them, the records officers come for those files and take them.

Interviewer: So if a person came in 5 years from the last time you saw that person and you need that file, is it easy to access it?

Respondent: Yes.

Interviewer: Okay. So you feel like the health information system and medical records system is working for you?

Respondent: Yes.

Interviewer: How about um, do you have registers for Acute Rheumatic Fever and RHD here? Do you register them separately?

Respondent: For us here on medical, we register them in the same register.

Interviewer: Do you have guidelines and protocols for RHD care here? Is there a protocol you are following as regards to RHD care?

Respondent: No.

Interviewer: Or guidelines. Have you ever looked at them?

Respondent: Yeah, I have ever looked at them.

Interviewer: Where do you keep those guidelines and the protocols?

Respondent: In the sisters’ room and others are in their ward. You know we have that ward, that cardiology ward; it is always has all the guidelines written there about what they should follow what to do to care for those patients.

Interviewer: So from the list we have gone through, um, in my understanding from what you have told me, the administration is okay.

Respondent: Yes.

Interviewer: You are fine with it? It’s working for you?

Respondent: Yes.

Interviewer: Funding for health care?

Respondent: [scoffs]

Interviewer: You said your salary was raised!

Respondent: Yeah, it was a bit raised.

Interviewer: So is it working for you?

Respondent: Yeah. That one is.

Interviewer: The health worker numbers, is that working for you?

Respondent: Yes.

Interviewer: You have enough staff?

Respondent: Staffing is not enough.

Interviewer: So that one is not working for you. Medications?

Respondent: Medications we get.

Interviewer: You get them. And the health information and medical record system you said?

Respondent: that one is okay.

Interviewer: For the guidelines and protocols for RHD care?

Respondent: Yeah

Interviewer: Now, as we are about to wind up, let’s look at your perceptions of patient outcomes. Generally, do you think our patients are getting the care they need here?

Respondent: yeah, they get care because they can come, we admit them and they are discharged when they are okay.

Interviewer: They are fine!

Respondent: yeah.

Interviewer: How about the outpatients?

Respondent: outpatients! Outpatients also come and be treated. Anyway, when they are on injectable like Ceftriaxone and what, for the days that they have given you, you have to keep on coming and those who have malaria and such illnesses, you go the pharmacy and get the medicine.

Interviewer: They get the medicine!

Respondent: Yes

Interviewer: Okay, so um, how about those who need surgery, can they access it here?

Respondent: Yeah, some of them.

Interviewer: You have had RHD patients who have had surgeries here?

Respondent: No, they are referred to Mulago.

Interviewer: Okay. So do people know the referral pathway? Do you have a path you follow when you are referring them?

Respondent: Yes.

Interviewer: Is it known to the health workers here?

Respondent: Yeah.

Interviewer: Okay. And then do you have any patients’ safety concerns and quality of care concerns? Personally, when you look at the patients’ safety and quality of care, do have any concerns on their safety and quality of care concerns?

Respondent: My concern is that, hmm; these patients suffer a lot. When they tell you to Mulago for surgery when you don’t have money, or they tell you to go to India, and really they suffer a lot.

Interviewer: They suffer!

Respondent: They suffer a lot.

Interviewer: What do you think can be done for these people so that they don’t suffer a lot?

Respondent: We should be having our own things; machines.

Interviewer: Machines which do what?

Respondent: The heart ... [laughs] yeah

Interviewer: The heart machines?

Respondent: Yeah

Then our patients will not suffer going to India.

Interviewer: So have you witnessed or do you feel that there are some preventable deaths which are occurring in the hospital?

no yet.

There is none that you have heard of?

Respondent: no.

Interviewer: And then, do you think patients are dying from the communities without presenting to the hospitals?

Respondent: Yeah, they die. Others when they fall sick, they tell you, “You are being bewitched.” They are threatened that don’t take to the hospital while others are taken to churches. Even here; they take the patient away from the ward claiming that they are going to pray for him!

Interviewer: Okay. So in your opinion, give me one or two most important things that Ministry of Health should do to improve our patients’ outcomes.

Respondent: If possible, they should bring each and everything near to the hospitals. Like in a referral like this one, we should get that machine nearby so that when we get those patients, at least we work on them. But they are not there.

Interviewer: Anything else?

Respondent: Yeah, and when they bring that machine, it should be free not to tell the patients to pay this or that so that they could be worked on.

Interviewer: Okay. Anything else before we wind up?

Respondent: –no response-

Interviewer: Nothing?

Respondent: No.

Interviewer: Thank very much.

Respondent: Thank you too.

Interviewer: Thank you for that information that you have given me, it will help us to see come up with a strategy to improve the health care for RHD patients. Now I will hand you over to Rosemary to give you

Thank you also.