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

Interviewer: Okay we are seated here in the clinic room. This is the 8th November, 2019 and the participant ID is WH002. So thank you so sir for allowing to come and talk to us.

Respondent: You’re welcome.

Interviewer: Just to remind you, there are no wrong or right answers. We are interested in what you have to say to us.

Respondent: Okay.

Interviewer: So we request you to be frank and share your opinions.

Respondent: Okay.

Interviewer: The data we are gathering is going to be kept confidential and we are not going to link your identity to any of the comments we make in the reports that we produce.

Respondent: Okay.

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

Respondent: I am 29 years old and 5 months.

Interviewer: Wow! What are your qualifications?

Respondent: So I am a medical doctor and I am pursuing my Masters in Pediatrics and Child Health at Mbarara University of Science and Technology, second year.

Interviewer: Okay, and where was your first training?

Respondent: I first trained from Mbarara University of Science and Technology for my ABCSP.

Interviewer: Okay. Nice to meet you.

Respondent: It’s nice to meet you too.

Interviewer: So you qualified in which year?

Respondent: I qualified in 2015.

Interviewer: 2015! And now you started a masters in?

Respondent: In 2018, now I am in second year.

Interviewer: Okay, so how long have you been working here at Mbarara regional referral hospital?

Respondent: I am not necessarily working but am attached to the training facility as a student but also doing my practicum, because the course is more of a clinical work benefit regarding my learning.

Interviewer: Okay. Before you started your masters, where were you working?

Respondent: I was working at Holy Innocent Children’s hospital. It is a Private Not for Profit children’s hospital, specialized and found in Mbarara district.

Interviewer: Okay. So when you look at the time you have been here, when you look at the demographics of your patients, what are the common illnesses that you have been treating as an HO?

Respondent: The commonest illness still stands as pneumonia followed by diarrheal diseases; diarrheal illnesses.

Interviewer: Does that cut across all age groups?

Respondent: No it doesn’t, those are more common in the under 5 years.

Interviewer: Okay. Then among the adults?

Respondent: Among the adults! I have not dealt much in the adults but on a few occasions I have dealt with adults. Most of them come with cardiac related diseases, cardiac diseases then issues to do with women health and orthopedic complications.

Interviewer: Okay, um, tell me a little bit about your training on RHD? Have you received any specific training during school?

Respondent: Yeah, my training majorly has been based on lectures and also involvement with my tutors and lecturers, plus the colleagues especially those who run the current Rheumatic Heart Disease clinic. Because, personally I got interest and I have the initiative within myself that we should help these children. I was first introduced to by ... when he had just come to introduce it and not because he is my OB, but he’s someone I knew plus the team. The fact that I knew them, the three of them, I got the interest in working with them. I have learnt a lot from them; the ECHOS, V-scans they do. We share with them, I have discovered many cases that I have never seen and we’ve also involved the pediatric cardiologist at our unit and it’s really resourceful.

Interviewer: Wow that’s good to hear. So like you said, you discovered new cases, like how many have you discovered that you’ve not seen before?

Respondent: The most recent one, the one I have not seen before is the Atrium Trauma. I just had it in theory, but I am the one who had the child, I took the child for screening and with unclear cardiac manifestations and we identified the findings on ECHO. Then the other one was Epstein anomaly, which I also had it in theory but I was able to look at it on the V scan.

Interviewer: Okay. So you said you got interested in RHD when you met the people working on the RHD project.

Respondent: Yeah.

Interviewer: Did they give you any training specifically in RHD management?

Respondent: Yeah. They just came and gave us an idea on what they had come to do, what they were interested in and they briefed us on part of their inclusion criteria. That one also helped me. With the inclusion criteria, if I find children with such, I help to link these children to the project.

Interviewer: Okay. So during school, what did they tell you about ... okay, before you heard about it from the RHD project, in school, did they give any training in RHD management?

Respondent: Yes, it happened both in a lecture and also ground rounds. Even in the first year of Post- graduate, we had an organized ground round by our cardiologist and we all participated.

Interviewer: Okay. And then how many patients with RHD do you see per day?

Respondent: I can’t say this is the exact figure, but anyway being a regional referral hospital and also being attached to children’s hospital, on average I see 1 to 2 per day.

Interviewer: Okay, and then ...

Respondent: Some of them are referrals and then others may not know, but after linking them to the project or to Doctor ... the cardiologist, they are identified.

Interviewer: Okay. And then um, so most of them are out-patients? Were you are in the outpatient or you’re also?

Respondent: Of course inpatient and outpatient.

Interviewer: So most of them that you see are in ...

Respondent: Yeah, most of them are apparently referrals in. Because of the project, the announcements which were run, the different health workers that suspect the symptoms, they refer them and we receive the patients.

Interviewer: So you made some announcements?

Respondent: The project made some announcements to create awareness.

Interviewer: Using what?

Respondent: Using radio talk shows.

Interviewer: So they’ve had an impact!

Respondent: Yeah, they have had an impact because I have worked for 3 years in the region and working in a children’s hospital has made me have a somehow big clientele, so I get calls and calls: “my child has this and this”, “we heard that there are people who work on these children, where can we find them? Please can you help locate them?” like that.

Interviewer: Okay. So I am interested in what you have been taught about RHD; what is your understanding of the causes of RHD?

Respondent: So Rheumatic Heart Disease per say comes as a complication of Rheumatic Fever and the commonest cause is the molecular mimicry arising from the toxins released by the Group A-Beta hemolytic streptococcus. The most common origin is from a skin infection but a throat infection also has a contribution and it is seen that the Rheumatic Fever will develop in 2-3 weeks with the classical features of the John’s criteria. However, when not managed, it can progress into complications among which is cardiac involvement as Rheumatic Heart Disease.

Interviewer: Wow! Okay. My next question may not even be valid because it’s asking if you are aware of the link between sore throat and RHD, but you mentioned it in your previous response. So what have you been taught can be done to prevent RHD?

Respondent: First of all, for any child who comes with sore throat or a skin infection, they must be managed well with following guidelines, that is, a minimum of 10 days of good antibiotics preferably following Culture and Sensitivity. But if culture and sensitivity is not done, at least Penicillin Paste Therapy is the best for a minimum of 10 days and these children receive a baseline ECHO, then an ECHO at 3 months and then a repeat ECHO at 6 months.

Interviewer: Okay.

Respondent: Yeah.

Interviewer: And then um, so what were you told are the treatment options for RHD?

Respondent: So the treatment options depend on the severity and the stage at which the child has presented. If the child comes in with a Carditis picture without features of decomposition, then you give them monthly Benzathine for a minimum of 10 years. But for those ones who come with severe cardiac manifestations, they are given for life or until they make 45 years of age. However, there are other managements, some of them come with a complication which could be effective endocarditis arising from Rheumatic Heart Disease and ideally, may need replacement of the valves and other forms of surgery to keep the child breathing.

Interviewer: Okay, thank you. And then what is your understanding on the long term prognosis of RHD?

Respondent: So once identified early the prognosis is good, but once identified late as most children come in, the prognosis is really poor and most children usually fall out of follow up. But once we keep them in the follow up cohort, then it helps us manage them appropriately.

Interviewer: Okay, why do they come late?

Respondent: Some of them are unaware; the parents are not aware and others meet health workers who don’t have the knowledge to diagnose. Then others come and actually miss the treatment when they reached the facility; you write for them treatment but it’s not available especially in government facilities, but some other parents actually are given treatment but they don’t take time to follow up with the strict instructions.

Interviewer: Okay thank you. Now, can you please recall the last patient you saw who had RHD and summarize that visit for me? How was it?

Respondent: Yeah. The last patient was actually a referral-in here and they thought the child had anemia following malaria, but they were treating a child for anemia but with a negative blood smear. So the child had fevers and came in with severe Pallor and had features of heart failure, but on listening to the heart and looking at the body, the child had features which were fitting the child in the criteria for Rheumatic Heart Disease, so an ECHO was done and confirmed the findings.

Interviewer: Okay, so how old was that patient?

Respondent: The child was 8 years old.

Interviewer: Okay, so was he in school? Could you be knowing?

Respondent: Yeah, the child was school going but had been out of school for the last one month. He was coming from Isingiro.

Interviewer: Okay. When you look at our patients, the RHD patients, are they aware about the link between sore throat, Acute Rheumatic Fever and RHD?

Respondent: I think there’s still that knowledge gap including actually health workers, and not only the parents and the children themselves but including health workers. Some of them take it for granted, but there are some who know and have the information. I have come to understand that following the ongoing study in the region at least there’s there is an idea. A percentage of knowledge has improved.

Interviewer: It has improved!

Respondent: Yeah.

Interviewer: Okay. So what sort of symptoms do they describe to you when they come?

Respondent: When they come they describe easy fatigability; the child gets tired easily and then for the older children, those above 5 years, they can also report the heart beating a lot what I can medically interpret as palpitations. And, some of them come with a fever and others don’t. Some of them remember that they had a recent throat or skin infection and others don’t.

Interviewer: Thank you. And then, are they good about follow up and adherence? When you tell them “come back on this day”, are they brought?

Respondent: Once parents are taught about the relevance, they surely come back. I understand there is a small percentage of those who are unable to afford the transport, those who are adamant and they don’t really take it seriously that there child may end up with severe complications, but with the health talk given to them on every visit and the updates on the progress and the future plans for the child, most of them come back. Maybe what I should add to make it improve is having strict days; at least every facility especially those who see children regularly should have strict days and they know that “whenever I go on this day, children are seen in this area and this is the reason.” Because, some of them come on any day and they may end up getting lost in the hospital and they end up as missed cases.

Interviewer: Okay, and then with adherence, are they adherent to the drugs?

Respondent: Yeah, some parents complain especially about the Benzathine being painful but there other remedies that are being done, giving it with Lignocaine 10%. However, an injection is an injection to the child and there are some parents who are adamant; once the child cries, they think the health worker is harming the child so they may not bring the child back. But counselling and telling them the relevance has helped to improve the adherence, plus other heart failure drugs.

Interviewer: Okay. So do you have some people who do some counseling here for them or is it ... ?

Respondent: Ideally we usually do it ourselves.

Interviewer: The doctors!

Respondent: Yeah. There’s no one employed that there are counselors in the clinic to do that; we do it ourselves.

Interviewer: You do it yourselves! Okay. And then, what sort of barriers do they commonly state? I Know you have mentioned some of them but to get more...

Respondent: Specific?

Interviewer: Yeah. What barriers do they state in getting the care they need?

Respondent: First of all its transportation to come for the reviews then secondly, the accessibility to the medicines. The major reason for accessibility is finances; most of the cardiac drugs are ideally expensive so they cannot sustain the medicine. So some of them have the issues of failing to complete the treatment because they do not have the money.

Interviewer: So on a typical visit, how much would an RHD patient spend on drugs?

Respondent: So, Ideally here in a regional referral, we don’t know because sometimes the drugs are available and sometimes drugs are available. So what we do is that we write for them and they go to the pharmacy because we ourselves have no right to ... even if we are sure drugs got out of stock, we do not have the right to tell them that because it’s the pharmacy people to do that. So we rarely know whether they have bought or not bought the drugs and at how much.

Interviewer: Okay. You told me this one, because it was asking me about barriers you perceive they face but you said that financially all that. So now let’s go to local health system barriers, now we are looking at the health system where you are part of.

Respondent: Yeah.

Interviewer: We would like to know which pieces are working for you, from the ones I am going to mention and why. We also want to know the ones that are not working for you and why? Let’s look at administration and leadership in the district; is it working for as you are doing your work here and taking care of patients?

Respondent: I should say the administration and the leadership right from the DHO’s office, they are supportive and there are sometimes some loop holes here and there but at least they are doing their best. And the advocacy, because once you reach for them, they help us and they really try to advocate for these drugs to be available, actually especially this hospital given that the fact that the deputy director is a pediatrician and a consultant. So children really get the priority in this hospital.

Interviewer: Okay, when you look at the funding for the health care in general, is that working for you and why?

Respondent: The funding is not working.

Interviewer: Why?

Respondent: Because most of these drugs must be available at all times for us to have sustainability of the services provided.

Interviewer: Okay. And then um, for RHD in particular, how is the funding?

Respondent: There’s no specific fund for RHD, like in the department I am attached to.

Interviewer: Okay.

Respondent: But the only maybe benefit we have, is the Pediatric Cardiologist who is trained and an employee, not visiting.

Interviewer: Talking about the health workers and the numbers that are here, when you look at the numbers and their qualifications, are they working for you?

Respondent: Yeah, I feel that given that in this hospital most health workers in the facility are actually residents who are learning and at the same time treating the patients. So I think the technical know-how would be adequate for basic needs of these children with rheumatic heart disease.

Interviewer: Okay, how about the numbers?

Respondent: The numbers are enough.

Interviewer: They are enough!

Respondent: Yes, they are enough.

Interviewer: Waiting time of the patients!

Respondent: Yeah. Waiting time is still a problem because the target is usually 45 patients for every patient, however, sometimes a patient comes, they are like 10 of them, they don’t have a specific time of coming and being a clinic, by midday to 1pm we want to close it and do other department activities. So certain times we tend to extend it because patients have come in Iate and they are many and they only have two major days. Wherever a patients comes we have to attend to them but especially for the reviews, they are on Mondays and Tuesdays. So waiting time is still a problem.

Interviewer: On average how much would ... per patient?

Respondent: On average I have realized it is 1 to 2 hours.

Interviewer: 1 to 2 hours of waiting. Quality of care; what do you have to say about it?

Respondent: quality of care, from a scale of 1 to 10, I would put it at 5.

Interviewer: At 5!

Respondent: Yeah.

Interviewer: Why?

Respondent: Why? One; we have a person who spearheads, one who is guiding the Pediatric cardiologist and then in addition to that, we have the residents who are pediatricians. We also have other stakeholders like people from the research team. Often when the cardiologist has not been on ground for some time for maybe some administrative reasons, we’ve got these students. So we always have plan B.

Interviewer: So you said 5, so there’s that other 5!

Respondent: Which is meant to make it 100%?

Interviewer: Yes.

Respondent: That one entails the drugs, accessibility, availability, the time they spend, the duration they take in the hospital, those who are unable to come back and are unable to fund their transport because they can’t afford. So that takes the other 5.

Interviewer: So we’ve talked about medication. And um, let’s look at diagnostics particularly ECHO- Cardiography.

Respondent: Yeah.

Interviewer: Tell me in this hospital.

Respondent: In this hospital it is done at 2 sites; one, at the Pediatrics’ department and two, in the tent where there’s a study going on. However, in the study they also work hand in hand with the Pediatric Cardiologist.

Interviewer: So is it for paying? Do they pay?

Respondent: No, it’s free of charge.

Interviewer: Okay. That's good.

Respondent: Including all the tests.

Interviewer: Let's look at these medications, the heart failure drugs, anti-coagulation, BPG. How are the stocks?

Respondent: The stocks are on and off I should say and sometimes they are off and we don't know from the pharmacy because they don't communicate to us. Sometimes they are present and we don't know, We don't get feedback to write what we think is best for the patients because we always have a scope of drugs but you sometimes look at the patient and you say “perhaps if the drug is not available, for this specific drug, the patient can look around and buy.”

Interviewer: so how can you improve that?

Respondent: So I think it all comes from the procurement system of the hospital and the Ministry at large; if they make it a priority for all cardiac diseases, actually most non-communicable diseases are being neglected.

Interviewer: How about the communication within this place so that if you are prescribing, you know which drug is available.

Respondent: Ideally I don’t get any information from the pharmacy. On most occasions, I write and the patient goes.

Interviewer: Okay. Now let’s look at the health information or the medical records system here, how is it? Is there any integration between inpatient and outpatient? Is there a clear flow of records?

Respondent: Yeah, we have books; the HMIS books, the red books, both for inpatient and outpatient and you can easily track the patient that you want.

Interviewer: So you find that okay?

Respondent: Yes, and for the admitted, we keep them in their record files.

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

Respondent: In the cardiology clinic, we have a register in specific and it helps us follow up and stage the treatments that these patients.

Interviewer: Let’s look at what has worked for you, factors that have made you do your work. You said the administration has made you do your work.

Respondent: Yes.

Interviewer: You said the health worker numbers.

Respondent: Yes. Then the resources to use; the ECHOs at least.

Interviewer: Okay. Yes you have that.

Respondent: Not enough but at least having one at the department and then the other one at the research project of Rheumatic Heart Disease gives us options.

Interviewer: Any other enabling factor that you can look at and say “yeah, this one has worked for me” and has enabled me do my work”? Probably one that I have not mentioned.

Respondent: Yeah. I think I should also say that the region where I am working is helpful because this is a region where health seeking behavior is improving, but there are certain regions you go to and you really need to take a lot of time to convince people about their health. But at least in this region people adapt easily to health seeking behavior.

Interviewer: What is unique? What are the factors behind this region?

Respondent: I think one of it is being situated in the town; most individuals are educated. Yes we still get those from distant places but the fact that they come, you can see that there is some bit of improvement.

Interviewer: Okay. We are on the last question. Do you think our patients are getting the care they need here?

Respondent: I think the patients are getting the care they need only that once drugs are made available, once we avail means of reviews of these patients, then we shall have moved a step.

Interviewer: Okay. Do you have any patient safety or quality of care concerns?

Respondent: Yeah, I should say so because often we prescribe these medications. Cardiac medications for example, Digoxin it’s what patients can easily acquire, however, it has its toxicities and often we don’t, always actually, we do not go to communities to asses these children. Some of those who die, we don’t know whether it’s the drugs that we have given them. Some of them who maybe get complications, we may not get feedback.

Interviewer: Okay. Wow! So what would be your recommendation?

Respondent: I think my recommendation would be, the way for example, the government put up village health teams, if there is a system that can be created whereby we have a proper follow up plan, individuals who are facilitated in one way or the other because Ministry has many ways of facilitating individuals, it could be transportation of health workers or individuals to give them health visits. So if they are facilitated to always go and follow up these patients and do extended teachings to these patients even when they are at home.

Interviewer: When they are at home!

Respondent: Yeah.

Interviewer: Okay. So have you witnessed any preventable death occurring in this hospital?

Respondent: Yeah, I have.

Interviewer: What was the scenario here?

Respondent: The scenario was; a child was 9 years old came in and was in end stage. So to me that was preventable and this is a child who was referred in from the peripheral unit. So if the child was diagnosed or identified early, then that death would be preventable.

Interviewer: It would have been preventable! So do you think patients are dying in the community without presenting to the hospital for care?

Respondent: Absolutely yes.

Interviewer: Why?

Respondent: Because of the knowledge gap; some of them don’t know what they are dealing with especially health workers, and others don’t know who to reach out to in case they get a complication.

Interviewer: So in your opinion, give me one or two most important things Ministry Of Health could do to improve the outcomes of our patients?

Respondent: Ministry of Health.

Interviewer: Yes.

Respondent: One; reinforcing the health workers with one; knowledge and then the numbers. If we have a good coverage of these clinics, then it would be very important. Then two, the equipment; the ECGs and ECHO, because now like a regional referral, we have one major ECHO machine if the study decides to stop! So that machine needs servicing meaning we’ve got situations where it’s down and children are not being ECHOED to know what’s going on with their hearts. So Ministry of Health should look for a backup. Then also follow up plans for these patients; I wish they put up a platform of following up these patients.

Interviewer: Okay, any questions before we finish?

Respondent: Maybe the question I would pose; how long is this study going to go on and how will the public receive feedback? Will it be through radio talk shows? Because for me, I have seen it help and improve to increase the cases that actually come to the hospital.

Interviewer: Okay. For the qualitative, it is not going to be long because so far we started the qualitative in November. We started with Lira, and we have been in Wakiso and we are here in Mbarara. So the qualitative will end with Mbarara probably by the end of December but for the quantitative which these ladies are working on, that one is still going until June. And then for the dissemination, we intend to have a publications and then we shall a dissemination seminar at the end of the day to share our findings and we shall call some stake holders to join.

Respondent: It would be very helpful.

Interviewer: Thank you very much for your time.

Respondent: You are welcome.

Interviewer: We appreciate your views and we shall use them to see how we can improve our patient care.