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

Interviewer: We are seated here in the cardiology room at Mbarara Hospital, Regional Referral Hospital. Today is the 8th of November 2019 and I am with health worker 004. Okay, Madam you are most welcome, thank you for allowing to speak to me today. Just to remind you, we are finding ways of providing better care for RHD and there are no right or wrong answers. Whatever you say is what we want to know.

Respondent: Okay.

Interviewer: so be frank and share your opinions. The data we are gathering is going to be kept confidential; we are not going to put any identifiers on the things that we shall produce in our reports. Can we go ahead?

Respondent: Yes please.

Interviewer: Please tell me a little bit about yourself; how old are you?

Respondent: I am 45 years.

Interviewer: and um, what are your qualifications?

Respondent: I am a nursing officer.

Interviewer: Where did you train from?

Respondent: I trained in Nsambya School of Nursing and Midwifery.

Interviewer: Okay, how long ago did you qualify?

Respondent: Um, 2001.

Interviewer: How long have you been working at Mbarara Regional Referral Hospital?

Respondent: About 12 years.

Interviewer: about 12 years! Okay, in your 12 years, what are the demographics of the patients you have seen; age, sex, are they married, not married? Generally.

Respondent: In relation to RHD?

Interviewer: Before we go there, generally the people you have seen?

Respondent: All sorts of age, gender, because this is a regional referral hospital; all health centers and units will refer here.

Interviewer: So what are the common illnesses you have seen by age group?

Respondent: Malaria, we have had HIV related conditions, meaning streptococcal meningitis, TB, HIV wasting syndrome.

Interviewer: Is that among the old or is it among the young?

Respondent: I have worked in medical adults and not so much in pediatrics, and I have also worked in surgery.

Interviewer: okay, thank you. So tell me a little bit about your training on RHD; have you received any specific training in school about RHD?

Respondent: Um, no, but just a simple presentation sometimes in CME.

Interviewer: That's all you received in school?

Respondent: In school I think we studied about Rheumatic Heart Disease, I think we did. It’s long ago [laughs].

Interviewer: And then, after graduating, you said you had CMEs

Respondent: yeah

Interviewer: was that after graduation?

Respondent: In practice.

Interviewer: In practice!

Respondent: it has been during practice.

Interviewer: So who gave you the training?

Respondent: I think it was a CME.

Interviewer: Who gave you that?

Respondent: I think it was Doctor ...; she is a physician in internal medicine.

Interviewer: she gave you one talk. Was it recent?

Respondent: Probably early this year.

Interviewer: early this year! Did you benefit from that?

Respondent: Yes I did, it was important to know how bad sore throats are.

Interviewer: okay, and then um, so was it done here?

Respondent: Yes it was done here.

Interviewer: so how many patients with RHD do you see? How often do you see RHD patients before I even start?

Respondent: Currently I am deployed in surgical ward but before surgical ward, for some three years I worked on internal medicine. Clear diagnosis that I can recall are two.

Interviewer: What year was that?

Respondent: 2013 to 2016.

Interviewer: 2016! And those cases you remember, were they children or adults? How do you remember them?

Respondent: Huh, I think they were not children; one was 16 years and probably that’s not a child. One was 19, a female; 19 years old.

Interviewer: Were they inpatients or?

Respondent: Yes, they were admitted that the time.

Interviewer: okay. So please tell me a little bit about um, what you were taught about RHD, what is your understanding of the causes of RHD? What causes it?

Respondent: What causes it is a sore throat that is probably not adequately treated.

Interviewer: um

Respondent: And streptococcus at large, infections.

Interviewer: Okay, are you aware of a link between a sore throat and RHD?

Respondent: Yes, after that CME now I know better.

Interviewer: But before?

Respondent: Before, probably I had forgotten the knowledge at school.

Interviewer: okay, so after getting that knowledge, when you look back, do you think there are some cases you probably just missed because you didn't have the knowledge?

Respondent: Yes, I think so. But in our set up, diagnosis is made up by the physician and as a nurse, it's the nursing care and treatment and probably other things.

Interviewer: okay, so um, what were you taught can be done to prevent RHD?

Respondent: Prevention is treatment of sore throats adequately, um for example people have a tendency where one is given antibiotics and they take them for three days yet the recommended dose is five days, and the moment you feel good, you think it is okay. So the adequate treatment is not adhered to.

Interviewer: So what were you taught are the treatment options for RHD? Which are the options we have?

Respondent: Penicillin. I don't know of recent, are we are still using X-PEN? But I know of Benzathine. That time when I nursed that young boy it was Benzathine. Why I remember Benzathine, I gave it to the boy and he collapsed. I remember it vividly.

Interviewer: He collapsed?

Respondent: Yes.

Interviewer: How did you handle that?

Respondent: We had to put him on IV fluids because when he collapsed, he actually started sweating. Well, we took the IV fluids, we took the vitals and he later came up and he was like “what has happened?” Oh! It was too painful; he was wasted and to get the muscle where to give the IM, I think that was probably ... it was monthly. He would come but when he got discharged after getting a little better, before actually the next dose, he’s back and in a worse situation. That’s the young boy I remember clearly.

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

Respondent: um, actually the two that I have talked about have long died. So the prognosis is very bad; they are sick for a very long time and I think that young boy we nursed for about three years.

Interviewer: So it’s poor!

Respondent: Yes, it is poor.

Interviewer: So um, you have told me about that young boy and that was how many years ago?

Respondent: Probably between 2013 and 2016.

Interviewer: so was he in school, the boy?

Respondent: Yes it was a boy.

Interviewer: No I mean was he in school?

Respondent: um, I don't remember that bit.

Interviewer: you don’t remember that bit! Do those patients know the link between a sore throat, ARF and RHD?

Respondent: I don't think so. They may not know, because I think even the health workers will treat the sore throat but will not treat the ... Probably when we know, we treat the sore throat then that is it; we end there. Because I think um, sore throat and Rheumatic Heart fever, one progresses after the other and if it's not adequately managed, then it goes to the heart disease.

Interviewer: okay, so um, what kind of symptoms do they usually describe to you they come; the RHD patients? What do they say they are suffering from?

Respondent: They talk of a fever that is constantly there. Um, they talk of joint pains. I think he also had chest pains.

Interviewer: okay. And then, are they good at follow up and adherence, our patients.

Respondent: Like I have told my experiences about those things. That time we had a clinic, I think it was in the medical clinic, the mother would try to bring the young boy in the clinic for follow up.

Interviewer: She did?

Respondent: And the regular injection, the monthly Benzathine.

Interviewer: okay, so that mother was bringing.

Respondent: Yes.

Interviewer: what do you think prompted her to always come? Because I know even if it’s not among the RHD patients, I know there are some people whom you give appointments and they don't come back, but with this mother you said came back. What do you think made her come back?

Respondent: I think she came to understand the condition the child had and probably she would see the improvement somehow though minimal. Probably she was like “if I don’t go, what will happen if I don’t follow the reviews?”

Interviewer: For those who don’t come back, what are the barriers; what is stopping them from coming back? What do they tell you that stops them from coming back? Okay let’s start with what they will tell you.

Respondent: Generally, some of them will tell you “I come from very far. Since you have managed me and I feel better, I can be followed up where I am.” Majority are quite poor; even if they would wish to come, things like transport um, is quite hard. But some of them still, even if you nurse them, now this is general; they think they can be healed through payers while others still think they can be healed through witchcraft.

Interviewer: okay. And then um, let’s look at the local health system barriers. Which of these pieces that I am going to mention are not working for you and what are the reasons? And those which are working for you, you also give me the reasons. Let’s look at the administration and leadership at the district and even here; is it working for you when you are taking care of your patients? Are you comfortable with the administration and is it facilitating you to do your work?

Respondent: That’s probably a hard one. Maybe I would look at it in terms of utilities but our utilities come through NMS (National Medical Stores), and of course orders are generated here and then to NMS. Of course they are not very prompt; some utilities can miss and then nursing in all patients is a little hard.

Interviewer: okay, leadership at the district, is it helping do your work well?

Respondent: Well, I don’t know the link between the District and the Regional Referral Hospital; I don’t know who is bigger than who? [Laughs] I am not very sure.

Interviewer: okay. Do you ever get supervision from the District leaders?

Respondent: No.

Interviewer: okay. Let’s look at the funding for health care, how is it? Is it working for you?

Respondent: funding, I think not. I know little about the budget, the Ministry of Health budget, I see there is 7.4% and then the budget cuts for regional referral hospitals is quite small.

Interviewer: and then um, how about for RHD, is there any vote for RHD?

Respondent: I wouldn’t know that; I think it’s all being managed under internal medicine and not separated.

Interviewer: okay. And then um, let’s look at the health workers, how are the numbers and qualifications? Are you happy? Is it working for you?

Respondent: Ho! Human resource is quite wanting. I will give you an example in currently the surgical ward; the average daily census is 90 patients and the duty schedule, there are 7 qualified nurses dividing themselves into those shifts; evening, night and day and yet one must be on leave, one must take their offs. The human resource is not good at all.

Interviewer: How about the qualifications you have around?

Respondent: the qualifications, yes they are enrolled, there are nursing officers.

Interviewer: Any specialist who can handle RHD?

Respondent: um, I am not certain if anyone has been trained in specifically that.

Interviewer: How about the waiting time for our patients, how is it?

Respondent: When they come in the outpatient clinic or generally?

Interviewer: I mean generally.

Respondent: You know in outpatients, I have not been part of the outpatient clinic.

Interviewer: And then the quality of care that you provide, how is it when you look at it?

Respondent: um, the quality of care, it’s probably, it’s greatly hindered by the limited human resource and the limited utilities, and the infrastructure is small. Probably there are young children, young adults and adults would require a unit of their own but the space here is too small. It’s too congested.

Interviewer: Let’s look at the medication; are the patients with RHD, some may want heart failure drugs some may want anti coagulation drugs, BPG, how are the stocks if you look at them?

Respondent: as far as I can recall, we have never run out of Benzathine and the anti-diuretics. Um, blood supply, probably not, but sundries and other utilities that go along.

Interviewer: Which are those utilities do you usually lack?

Respondent: Syringes and gloves.

Interviewer: wow! How about the diagnostics especially the ECHO Cardiography?

Respondent: Echo cardiography is available but at a cost. I don’t know how often it should be done but for those who are supposed to get it, it will take time for them someone to get the funds to get it done.

Interviewer: wow! So if it’s recommended for a patient who can’t afford, what is done?

Respondent: um, patients who can’t afford, last time we used to have what we call a Poor Patients’ Fund; we would find out how much it’s costing and then we would get the patients done, but of course the numbers; if the numbers are that big, then it becomes hard, we can’t handle.

Interviewer: Let’s look at health information and medical records system place, how is it? How records are kept and are you happy with that? How is that working for you? In case you need to access information on the system, can you easily get it?

Respondent: Actually it’s hard to trace the old note, um, but we have been assured we are upgrading to system to be electronic. That’s what we have been assured but of recent, accessing old files is hard.

Interviewer: Do you have specific registers for ARF and RHD here?

Respondent: no.

Interviewer: Do you specific registers for certain diseases here?

Respondent: Um, all registers are integrated kind of registers. Like SGBV, HIV; integrated kind of.

Interviewer: okay. Do you have guidelines and protocols for RHD care in this hospital?

Respondent: I have not come across any. [Laughs]

Interviewer: Would they be important?

Respondent: Yes, I think so.

Interviewer: Why do you think so?

Respondent: To avoid missed opportunity; we end up treating malaria! Someone has a fever, yes probably its malaria, but if the guidelines are there, one would take a further step. If I have treated these fever as malaria or UTI and probably the symptoms are persistent, and maybe this one has a history of a sore throat, then the aggressiveness in management probably would be ...

Interviewer: okay. Then, do you have a proper referral pathway for our RHD patients here?

Respondent: um, we actually manage them on timely limit and probably pediatric ward.

Interviewer: and if you can’t handle them here, then what do you do?

Respondent: [sighs]

Interviewer: now, from all the pieces we have talked about, you can tell me what you agreed to. With administration and the leadership in the district, you didn’t know even what their role is!

Respondent: [laughs]

Interviewer: funding, that didn’t work for you, funding for health care; health worker numbers?

Respondent: No.

Interviewer: Medication?

Respondent: Medication particularly with Benzathine, we have not had shortage with that.

Interviewer: um, the health information system, that one is lacking.

Respondent: Yes.

Interviewer: then the guidelines and protocols, those are also lacking.

Respondent: Yeah.

Interviewer: Then, anything else that has motivated you to work; you still care for your patients despite all the challenges?

Respondent: what has motivated me! It’s my job to care.

Interviewer: okay. Last set of questions. So I would like to know about your perception about patient outcome; generally do you think our patients get the care they need here?

Respondent: Generally yes. Why yes? Um, the specialized consultants are available to make the right diagnosis. Where we are handicapped is usually on the investigative part; laboratory and radiology. That’s where sometimes the challenges are because of logistics.

Interviewer: because of logistics!

Respondent: Yes.

Interviewer: And um, in case a patient needs surgery here?

Respondent: if a patient requires surgery, probably not. We have not had any cardiac surgeries performed here.

Interviewer: Do you have any patient safety and quality of care concern as you?

Respondent: Patient safety?

Interviewer: Yes, where you feel like your patients are safe or they are handled in a safe way? Do you have some concerns or the quality of care?

Respondent: There are concerns but the concerns are probably policies and the quality of care is not that good.

Interviewer: okay, and you said it’s because of the?

Respondent: The infrastructures, utilities, and the supplies.

Interviewer: okay. Have you witnessed any preventable deaths in the hospital here? You feel like that death shouldn’t have happened?

Respondent: yeah I think so.

Interviewer: What was the scenario like? What could have happened?

Respondent: A scenario was um, lack of space in the theatre, and we kept on telling this patient that “we can do you after this or after this other case.” or “Let’s do you after this case”

Interviewer: And the patient passed away!

Respondent: Yes, and the patient passed on after he had been put on the table, but I think there were a time lag.

Interviewer: Do you think our patients are dying in the community without presenting to the hospitals?

Respondent: I think they are. There are places where transport is really hard to get to the health center and if they are to go to the health center, the referral system is hard, and they reach the health center when it’s even late. By the time they are told that we are sending you to the referral hospital, then they have to go back home to look for what to transact to get money to bring them to the hospital. It’s hard.

Interviewer: last question; in your opinion, give me one or two most important things Ministry Of Health should do to improve the patient outcome?

Respondent: Increase on the human resource.

Interviewer: Which carders mainly?

Respondent: The nursing carders. Now for Mbarara, it’s a little different; we have both Ministry of Health and the University. So with the university at the doctor’s level, probably we are covered somehow but for the nursing side, we are not covered.

Interviewer: That’s one.

Respondent: and probably the infrastructure; this being a regional referral which was constructed in 1953, it cannot match with the current numbers. And the disease burden, of course the trends have changed. In Mbarara, the means of transport is mostly motorcycle, so there are a lot of accidents and we need actually a separate complete unit for neural as well.

Interviewer: okay, anything else before we stop?

Respondent: Budget cuts are also doing us bad. If the government would follow the Abuja Declaration and meet the 15% declaration of which Uganda is also a signatory, probably it would do us good.

Interviewer: it will do you good!

Respondent: Yes.

Interviewer: Okay. Thank you very much, we appreciate so much your feedback that you have given, and we shall use your data with other health workers’ to see how we can improve care for our patients. Thank you so very much.