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

Interviewer: We are in the cardiology room at Mbarara Regional Referral hospital. Today is the 8th of November 2019 and this is Health worker 003. Okay, nice to meet you madam.

Respondent: You’re welcome.

Interviewer: Thank you for allowing to speak to us. Just to remind you, there are no wrong or right answers and this study is meant to determine how to provide better care for RHD. Please be frank and share your opinions and the data we gather is confidential; we will not link your identity in any of the comments or reports we produce. Can we go ahead?

Respondent: We can go ahead.

Interviewer: So please tell me a little but about yourself; how old are you?

Respondent: I am 47 years old.

Interviewer: What are your qualifications?

Respondent: I am a nurse.

Interviewer: Okay, where did you train from?

Respondent: I have gone to, okay like several trainings. I did my enrollment.

Interviewer: From where?

Respondent: In Villa Maria, then I went to Rubaga for my diploma and right now I am doing my bachelors.

Interviewer: Your bachelors. Where?

Respondent: MSU

Interviewer: And then how long ago did you qualify for the diploma?

Respondent: Um, 2004, 2006 to now.

Interviewer: When did you start the degree?

Respondent: I started in August.

Interviewer: This year?

Respondent: Yes, this August 2019.

Interviewer: And then how long have you been working here at the hospital?

Respondent: 19 years.

Interviewer: 19 years! When you look at the patients you see here and their demographics, what are the common illnesses? Who are your patients here generally?

Respondent: Right now I have gone to various wards, but right now my age group is between 15 and no limit, upper limit.

Interviewer: Okay, women or men?

Respondent: Both.

Interviewer: Old? You said most of them are?

Respondent: Above 15 years.

Interviewer: Then um, and which are the common illnesses you treat?

Respondent: Basically medical conditions. All medical conditions; stroke, malaria, cardiac diseases, kidney diseases, liver diseases, because I am in the medicine ward.

Interviewer: So tell me about your training in RHD; have you received any specific training in school about RHD?

Respondent: Of course like a course unit on that.

Interviewer: You had a course unit?

Respondent: Yeah, but not any special one but as a routine Rheumatic Heart Disease.

Interviewer: After graduation have you received any training on RHD?

Respondent: No.

Interviewer: You have not! How about CMEs, have you attended any about RHD?

Respondent: We attended one.

Interviewer: One. Where was that?

Respondent: It was within the hospital.

Interviewer: Here!

Respondent: Yeah.

Interviewer: Who organized that one?

Respondent: Eh, can I recall? But I remember a certain staff gave it.

Interviewer: they did! So in a day how many RHD patients do you see or in a week or month?

Respondent: Maybe let’s talk of maybe a month.

Interviewer: Okay.

Respondent: Can a month really work anyway! Maybe I can say like in three months, I haven’t seen any. There’s one I last saw some 4-5 months ago.

Interviewer: Okay. So in a year you see like how many?

Respondent: Maybe 4, but it depends.

Interviewer: Okay. So the ones you usually see, are they outpatients or inpatients?

Respondent: Inpatients because I am at inpatient.

Interviewer: Now I am interested in what you have been taught. What is your understanding of the causes of RHD? What causes it?

Respondent: Okay, what I can recall, I was told that if streptococcal sore throat is poorly treated, it can progress to rheumatic. So we are actually encourage to treat and advise; in case any child gets sore throat, you have to get proper treatment for it.

Interviewer: So um, but you have answered that. I was going to ask about the link between sore throat and RHD? You know about it?

Respondent: Yes.

Interviewer: Okay. So were you told can be done? What were you taught can be done to prevent RHD?

Respondent: Of course we need to sensitize the community so that they don’t take it lightly; any sore throat can lead to something bigger than what we expect. So we need to sensitize them so that they consult the people concerned in time to get proper treatment to prevent these diseases.

Interviewer: Okay. So what were taught are the treatment options for RHD?

Respondent: Yeah usually the treatment of choice is to give Penicillins to clear the streptococcus and then we need to look at pain management in these people, and to basically prevent complications which can lead to damage of the heart valves and all that.

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

Respondent: [sighs] now in which context, because I know that this patient will be on drugs for long, will have to be coming back for reviews and you know at a certain point things can worsen and even he needs surgery if the valves are destroyed, then this patient can go out to be operated.

Interviewer: So tell me about your encounters with patients with RHD. You said the last the last one you saw was 5 months ago!

Respondent: It was like 5months ago.

Interviewer: So briefly summarize that visit, who was this patient?

Respondent: This was a 14 year old who has been repeatedly being admitted and was confirmed with Rheumatic Heart Disease. But what I understand is that we have been treating this boy and he had challenges; as you know we might not be having drugs, so that becomes a problem, but he would come in pain. We tried to manage then after some time they are discharged and within a few months he’s back, so he was continuously being admitted, but now I have lost contact with that one somehow for sure.

Interviewer: Okay, why? He is no longer ... ?

Respondent: You know follow up of these people is not very easy, so you will see them when they come to the wards.

Interviewer: What makes it hard to follow up these patients?

Respondent: Of course you know, a lot of challenges. For example these patients could find us on wards , when you discharge you give them appointments to come back and if they don’t come back, you might not get all those funds to go to the village and fish them and bring them to the hospital, unless if they come back to the hospital.

Interviewer: Why don’t some people come back?

Respondent: Why people don’t come back!

Interviewer: Yes.

Respondent: One, it could be funds. Two, maybe ...

Interviewer: Funds for what?

Respondent: For transporting and drugs. When they see that this disease is not going away however much you try to explain to them that it will be a long term treatment. Others maybe lose trust in us; we are treating something that doesn’t go away and maybe they opt for other medicine, maybe the local medicines.

Interviewer: Okay, and most of the patients you have seen with RHD, are they working or not, are they school or not?

Respondent: I haven’t seen anybody above 20 years.

Interviewer: Okay.

Respondent: It’s always below.

Interviewer: Are they in school or not?

Respondent: They are on and off of school and they end up dropping out of school.

Interviewer: Why do they drop out?

Respondent: Because of the ill health.

Interviewer: Okay. Do you think these patients are aware of the link between sore throat, ARF and RHD?

Respondent: There’s limited knowledge in that.

Interviewer: Why is it like that?

Respondent: Because even when somebody comes in with that, he will come when it has worsened. But getting the knowledge that “oh, I have got sore throat so I should attach it to something”, I don’t think they have that knowledge.

Interviewer: Okay. What sort of symptoms do they describe when they come?

Respondent: Usually, they have a fever, joint pains, they will complain of chest pain and breathing will not be okay. But mostly, it is pain.

Interviewer: Pain! Okay, so generally, are they adherent to drugs? How is their adherence?

Respondent: I can’t generalize that because usually, no. The ones I have seen are of a young age, and if they drugs, they can take them but sometimes they bring in complaints, “my drugs were out of stock and I didn’t have money to buy” So adherence becomes a problem, but some of them do.

Interviewer: They do!

Respondent: But you will find that the ones I have seen really are unable to cope up with up to date treatment.

Interviewer: Because of?

Respondent: Funds of course.

Interviewer: How about those you tell to come back, “come back next month for your injection”

Respondent: They can adhere for some time but then after a long time they are lost to follow up.

Interviewer: Why?

Respondent: They will give you those reasons like “I couldn’t get transport to come to the hospital” not until then other bad symptoms come and then that’s when they will wake up and come back.

Interviewer: So when things worsen, that’s when they come back!

Respondent: Yes.

Interviewer: Okay, so apart from transport, then they only come when things get worse, any other barrier you see they face or they tell you that they face in getting the care they need?

Respondent: They are demoralized because they are treating something that is not going away.

Interviewer: Anything else?

Respondent: No.

Interviewer: Okay. Let’s look at the local health system barriers. We want to see which pieces work for you among the ones I am going to mention and why you think they are working for you.

Respondent: Okay.

Interviewer: Let’s look at the leadership and administration in your district.

Respondent: Okay.

Interviewer: Is it working for you?

Respondent: If you talk of administration, for example given the setting I am in, I will just look at the drugs that are brought to me, but I have not seen people specifically coming looking for that. We treat them as we treat other general patients, so I don’t know how to reach that.

Interviewer: So with administration, in case you don’t have drugs, incase you need maybe the funds, things you report to administration, when you report them, are they worked on? Do you get help when you need it?

Respondent: Of course there’s a system that we have to follow. If the system has not brought those things in, they can get some emergencies but we still stick on the system.

Interviewer: So are you happy with the administration?

Respondent: Yeah, because it does what it can, yes.

Interviewer: How about leadership in the district now?

Respondent: At the district!

Interviewer: Yes.

Respondent: Have I really interacted with the district?

Interviewer: No?

Respondent: No.

Interviewer: Okay when you look at the funding of health care in general, is it working for you?

Respondent: In general?

Interviewer: Yes.

Respondent: As in Uganda?

Interviewer: Yes.

Respondent: No, it is not.

Interviewer: It is not!

Respondent: It is not because I would love to work in an environment where everything is at hand. A patient comes in, needs a drug and it’s at hand not that business of “You go and buy this drug” or “we can’t help because we don’t have drugs.” you know! Somewhere, it is lacking.

Interviewer: How about for RHD patients now, how is it?

Respondent: As I told you, I don’t specifically treat only that group; we generalize everything.

Interviewer: Okay.

Respondent: Yes.

Interviewer: Let’s look at the health workers, how are your numbers here? Is that area working for you?

Respondent: Woo, now what can I tell you about the numbers?

Interviewer: Are they okay?

Respondent: No, not even, what can I term it? Because, like, the nurse patient-ratio for example in my department, you may find that it is one nurse to take care for 50 patients! Now what are you going to do? So numbers are not ...

Interviewer: How about the qualifications people have?

Respondent: Some of them are not regarded because you may be a diploma holder but you are working as a certificate holder; you are paid salary of a certificate holder. A degree holder is being paid as certificate holder! So that one also contributes to the demoralization and all that

Interviewer: What can be done? How can that be ... ?

Respondent: Yeah, we just need the government to streamline things but you know it’s a process which we appreciate, maybe one time we shall be there but at the moment, it is lacking.

Interviewer: Okay. When look at the waiting time for the patients, how is it?

Respondent: Compared to the numbers of human resource, the numbers would explain the waiting time. Because it is a small number, so how do you expect a patient to be get served so fast of course with triage and look at those who are very urgent, very emergency, but also the other ones came for the service. So the numbers will explain that.

Interviewer: How about the quality of care you provide?

Respondent: challenging, because you know what to do but because you are poetizing, you can’t meet all. For example, if I have 4 patients who really need blood, 3 patients need oxygen but then there is another one who needs Ceftriaxone, so what do I do? I will priotize so you find the other is one missing out because of the work overload.

Interviewer: Work overload! Okay, so if you look at the medication, what do you have to say about medications like anticoagulation drugs, heart failure drugs? How are the stocks here, BPG?

Respondent: These days it has improved, it has really improved but the numbers consume it before, but it has greatly improved. The cardiac drugs have improved.

Interviewer: What has led to that improvement in your own ... ?

Respondent: [sighs] do I know? I really don’t know. But maybe, the statistics maybe, because these days we have so many heart problem patients. Maybe it can explain that but there’s great improvement because even those expensive drugs that we were not used to in the hospital, now we have them though the patients are too many so they are consumed in a short time.

Interviewer: How about the diagnostics; the ECHO-Cardiography?

Respondent: Those ones are in place, at least the service is there but patients pay a small fee for maintenance.

Interviewer: They pay like how much?

Respondent: I am not very sure, but maybe 30,000shs for ECG and maybe 80,000shs for ECHO. I am not very sure about that but what I know is that they pay some small money for maintaining the machine which has worked, because the other time it would break every month with no repairs, but I think that one is better; our patients can easily access those services.

Interviewer: And those who can’t pay, what do you with them?

Respondent: Usually the in-charge of a certain ward or head of department liaises with the administration and we revise that.

Interviewer: When you look at your health information and medical records system, how is it? What would you say about it?

Respondent: I think we are losing out somewhere. It is not up to date because we would wish it is computerized. Because when a patient comes from the starting end, by the time you reach my end, I can easily know you but that is lacking. Even that stationary itself is on and off, so it is not easy.

Interviewer: Is there some bit of integration between facilities, inpatient and outpatients? Are things streamlined like you are inpatient and the patient has passed outpatient, is it easy to access these records?

Respondent: Usually what they do, when a patient comes to outpatient, he is assessed and if they think this patient should be inpatient, so they have to write a note, goes to accidents and emergencies and then that’s where the patient starts then later taken to other wards.

Interviewer: What if that patients comes after 5 years and you need to look at that patient’s history, is it easy to look at that patients records? How easy is it?

Respondent: What we do, what is on ground is that when a patient is discharged, he is given a discharge form with his/her own ID number. In case that patients come back with that number, it’s easy to retrieve the file. But if he can’t come back with the file but can remember maybe when he was here, records may be available, but if you can’t remember anything, then it’s a bit difficult.

Interviewer: Do you have any registers for ARF or RHD patients here?

Respondent: Not specific, it is general where we also record other patients.

Interviewer: How about guidelines and protocols for RHD care, do you have them here?

Respondent: It is general still; it is not specific.

Interviewer: Why is the situation like that in your own view?

Respondent: Unless when someone comes up with that interest, but I would look at the protocols for malaria, diabetes and it would be too much, so that’s why we generalize things. But there are some diseases where someone picks interest and then he comes up something like that.

Interviewer: Okay thank you. How about referral pathways are they clear to you? Do you know where to refer RHD patients? Do you know the steps you take to do the referral?

Respondent: Like a patient has been inpatient or outpatient?

Interviewer: Maybe you can no longer manage that patient here and you have to refer them elsewhere.

Respondent: Of course if we fail here at out referral, then our next step will be the National Referral in Mulago. That would be our next step.

Interviewer: So we have mentioned very many health system barriers and certain things you have said they are working for you and others you didn’t feel like they are not working for you. So you said administration was fine.

Respondent: Yeah.

Interviewer: If I say anything you don’t agree to you can ...

Respondent: [laughs]

Interviewer: Funding wasn’t fine, it wasn’t working for you.

Respondent: No.

Interviewer: Health worker numbers didn’t work for you.

Respondent: Yes.

Interviewer: Medications?

Respondent: On and off but improved.

Interviewer: Health information, medical records system, that one you said it works for you?

Respondent: No.

Interviewer: You said it’s lacking because you wanted to start using computerized.

Respondent: Yes.

Interviewer: Then for the guidelines and protocols.

Respondent: Not in place specifically for RHD.

Interviewer: Do you ever get CMEs? You said you attended one CME!

Respondent: Yes.

Interviewer: Do you think you need more?

Respondent: I think. Those are very helpful, you know after school you take so long seeing a patient that you even forget how to manage of such patients.

Interviewer: If they were to offer you training in RHD area, where would you want the training to be? In which specific areas of RHD?

Respondent: Of course in ...

Interviewer: If they give you an offer to train you about RHD, where would you want it be?

Respondent: Like a small part of RHD, of course I would want the nursing part of it and the management.

Interviewer: Okay. And then for the last set of questions; let’s look at your perception for patient outcomes. Do you think our patients are getting the care they need here?

Respondent: 50%.

Interviewer: Why?

Respondent: Because if I write you drugs and they can’t provide! Yes you have got the right prescription but have you got the drugs?

Interviewer: Apart from drugs being a problem?

Respondent: I think the personnel to handle that are available; we the physicians and all that but the big part of it is the provision of drugs to those patients.

Interviewer: Okay. In case a patient needs surgery, can they access surgery? Maybe if an RHD patient is at that stage where they need surgery, would they get it here?

Respondent: Not in Mbarara here. Not in Mbarara; that one will need to be referred.

Interviewer: Okay. Do you have any patients’ safety and quality of care concerns?

Respondent: As in my unit or?

Interviewer: Your stay here, what you see and observe, do you have any concerns about patients’ safety and the quality of care that you provide?

Respondent: Yeah. You know in this place, we have so many patients as I have told you and human resource is limited. So you would love to do a lot for that patients including explaining in details about the disease and how to manage, but you know you can’t do that because of man power, the time; you have a lot to handle in one setting.

Interviewer: Okay.

Respondent: So they miss out that.

Interviewer: Okay, have you seen any preventable deaths here in this hospital? Deaths that could have been prevented?

Respondent: And then you continue to die?

Interviewer: No, have you seen any person dying and you say “surely, this person shouldn’t have died” maybe probably because of the care?

Respondent: Yeah, those are there.

Interviewer: Like which scenario can you give?

Respondent: Okay at times when we don’t blood, patients really die.

Interviewer: You have some instances where there’s blood!

Respondent: Yes. Patients will really die. Some patient’s maybe they can ask for some expensive drugs that the government can’t give us, those ones die. There are sometimes when we don’t have oxygen, so those ones would have been prevented but patients are likely to die because of that.

Interviewer: Wow. So do you think our patients are dying in the communities without presenting to the hospital?

Respondent: Do you mean specifically for RHDs or generally?

Interviewer: Generally.

Respondent: So much. Without presenting to any hospital here or any health center?

Interviewer: Any hospital or health center. Anywhere.

Respondent: Yeah they do because we still have that perception that we can get native drugs and all that and then they end up not working out. So I think some of them die because of that.

Interviewer: In your opinion, give me 1 or 2 most important things Ministry Of Health should/could do to improve patient outcome?

Respondent: Where now? In the community or here in hospital?

Interviewer: In the hospital, anywhere they are. But let’s start with the hospital.

Respondent: I believe that if we improve human resource, you bring the number of nurses to patients at least to 10, because it would have been 4, I think something would be better. And, stocking drugs; essential drugs and we don’t those out-of-stocks I think it will be okay. Then in the community, the community lacks a lot; we need to sensitize them. As much as health centers are there, but still they don’t man power to handle. So we need just need to go deep down and sensitize them and then we also facilitate those lower centers to handle those cases.

Interviewer: Okay. Anything else before we finish?

Respondent: Not really.

Interviewer: Thank you so much for your time.

Respondent: you are welcome.

Interviewer: We appreciate your views and they will help us come up with strategies to help RHD patients to get better care.

Respondent: How I wish!

Interviewer: Thank you very much

Respondent: Okay, you are welcome.