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

Interviewer: today is the 18th of November 2019 and we are at the pharmacy stores of Mbarara regional referral hospital, thank you sir for being here with us and allowing to participate in this interview. My name is ... and like I told you, I work with Uganda heart institute and in the project of acute rheumatic fever study, so you are welcome

Respondent: thank you

Interviewer: and tell me a bit about yourself, how old are you?

Respondent: let me begin with my age, I am just 28 years old

Interviewer: okay, and what are your qualifications?

Respondent: yes my qualifications are I have bachelors in pharmacy

Interviewer: okay, where did you train?

Respondent: I trained from Mbarara University of science and technology

Interviewer: and when was that?

Respondent: that should have been from 2009 to 2014, then did my internship in Rubaga and I worked my first year with a medical centre its name called Issa medical centre, went ahead and worked with the district hospital, which is a PNFP, Rushere community hospital, then later I joined Mbarara regional referral till to date.

Interviewer: how long have you been in Mbarara regional referral?

Respondent: Mbarara regional referral I think I am in two and a half years I think, I should approximately be completing my third year.

Interviewer: okay, and what are the demographics of the patients you see at this hospital ever since you came, which age groups of the patients do you see?

Respondent: the patients we always see at the hospital are almost from from zero age to the oldest which you can never know, that's the kind of patients we see, and you see they are from different places, there are even patients who come from Tanzania, refugees, others are close to Kisoro, everywhere, Masaka also refers here, Fortportal refers here so the patients are many from different places that are not even in our catchment area.

Interviewer: okay, and what are the common illnesses in these patients you see, depending on the group, do you remember the common illnesses they have?

Respondent: if I am to see, the common illnesses keep on changing like, for last year, there were these other common diseases, maybe someone comes presents with maybe UTI and PIDs, ulcers, upper respiratory tract infections, those are the common ones we see at OPD, then the different wards, now like at medical ward, there is the common patients we always see maybe having heart complications, hypertension and all that.

Interviewer: okay, so tell me a bit about your training on rheumatic heart disease have you received any specific training during school about rheumatic heart disease?

Respondent: rheumatic heart disease, I heard it in school, and if I am to remember, I think it could have been given so much time during its being taught, I might not remember the nitty- gritty time has gone I might not remember but at school, were taught about rheumatic disease but since I started working, I have not heard any training, maybe refresher training of rheumatic disease.

Interviewer: actually that leads me to my next question because I was going to ask you that after graduation have you heard any specific training about rheumatic heart disease?.

Respondent: no I haven’t heard any training of rheumatic heart disease.

Interviewer: okay, but have you seen rheumatic heart disease patients ever since you started working especially here at this hospital?

Respondent: on the wards, for the time I have been on the wards, I can’t recall exactly, but I think I could have seen because due to the nature of my work, you find that there is so much, I am responsible for supply chain, I am responsible for training staffs, I am responsible for administrative issues, so at times I find that even when I am on ward for a shorter time, my patient to patient interaction time at times is always so small maybe just on a few spot checks but I think for rheumatic heart disease patients I could have met him those first days when I was trying to practice in the medical ward.

Interviewer: so what's your understanding of the causes of rheumatic heart disease in your own understanding?

Respondent: at first like I have told you, from the basic local explanation that you have been using to explain to people, we believe that rheumatic heart disease is; the walls, and how people say it in Luganda “ebisenge byomutima babilidde” though the actual things that we are taught in class are that maybe those other valves of the heart are eaten up.

Interviewer: Okay do you know what causes that to happen?

Respondent: from what I learnt I learnt in school, the little that I could recall would be that when you have simple disease, maybe like a simple cough that is not treated, they told us even a mere infection, or even a nose infection, that alone can get its own way within a blood stream to reach the heart and you get that kind of the infection

Interviewer: okay, are you aware of the link between a sore throat and rheumatic heart disease?

Respondent: now that physiology that happens there, is what I can’t recall properly

Interviewer: and what were you taught can be done to prevent rheumatic heart disease?

Respondent: from what we were taught, we were taught that, where resources are available in a resourceful environment mostly they could do a throat sore by maybe, they can be able to identify the micro organisms but in these other facility settings here in Uganda they told us they never take any sore throat for granted, maybe they can go ahead to find out whether its viral or bacterial but make sure that every sore throat can be very treated any cough, actually any cough needs to be attended to because at times it can progress somewhere and its more expensive to treat rheumatic heart disease than the sore throat.

Interviewer: okay, and what were you taught are the treating options for rheumatic heart disease?

Respondent: rheumatic heart disease I think by then, if I am to remember, one stays on the treatment for antibiotics for quite sometime, it’s not a treatment for antibiotics and if I am to recall, I remember they should have told us someone to be on penicillin for quite a long time, there I can’t remember the exact time we were told.

Interviewer: okay, any other options or treatment options?

Respondent: because even if they are to do valve replacement and all that still that doesn’t prevent you from taking those antibiotics

Interviewer: Okay and what's your understanding about the long term prognosis of rheumatic heart disease?

Respondent: what I know is, like I was saying, most of the patients that I have been meeting that I know their fate is always death but actually I haven’t seen one who has recovered, I haven’t met one who has recovered.

Interviewer: okay, let’s remember those ones you have encountered, do you remember the last person you saw with rheumatic heart disease, can you try to recall?

Respondent: yes, it was a young kid

Interviewer: how old?

Respondent: it was around 9 or 11 one of the two ages

Interviewer: male or female?

Respondent: it was a male

Interviewer: how long ago was that?

Respondent: that could be around three years ago

Interviewer: was that kid in school or not

Respondent: he wasn’t in school; actually he could have left school with parents saying that there is unexplained illness.

Interviewer: is there any other thing you remember about that child?

Respondent: the diagnosis was a problem by then, actually it was doctor ... she is the one who came and we were having that kid on ward, that's when she said this kid could be having such and such a problem, why don’t we go for further investigations to find out.

Interviewer: okay as you saw parents of that child or any other parents who have children with rheumatic heart disease, do you think they are aware of the link between sore throat, acute rheumatic fever and rheumatic heart disease in your own opinion?

Respondent: No, for them they were just having a patient whom they were just keeping in the hospital, actually the unfortunate bit is that they had been hospitalized for two weeks on the ward with no proper diagnosis.

Interviewer: okay, so let us look at this child you remember very well, what were the symptoms this child was presenting with?

Respondent: for that young man, he had already grown too small, looking malnourished, there are some parts of his body that were darkening on his body and I saw, he was also having amm, I don’t remember exactly but I am trying to draw the picture of that young boy.

Interviewer: okay, and do you think these patients are generally good at follow-ups and adherence to their drugs?

Respondent: I think if you well explain to them their problem and you tell them that this will be the solution and when they swallow the drugs they see a change within the first few weeks, they can adhere because by the time those guys came into hospital, it was just at the extreme end.

Interviewer: okay, so is the problem not explaining to these patients?

Respondent: that could be one of the cause, one if they don’t explain to these patients, two, even these cultural beliefs in them, you can convince the patient, the response to treatment I don’t know why it would always be slow, that one alone discourages patients from doing what, from taking these medications

Interviewer: is that from your own opinion?

Respondent: that's from my own opinion

Interviewer: okay, and for them what do they say, these patients, what do they say are the barriers they commonly face to getting care

Respondent: these patients, now like that patient he was coming from very far, maybe from Isingiro, I don’t still remember, he had moved through several clinic, several health centres, several tradition healers to a point where by the mother realised things were too bad to bring him to Mbarara here, so what prevents them from getting health care, sometimes they find that the normal conventional way of getting treatment, they feel it’s not healthy

Interviewer: how?

Respondent: because most of them think some of these problems they have are because of their cultural beliefs, that is one, two some people don’t have money, some people are very poor, because even that patient was coming from a very poor home.

Interviewer: so you mean in this area people that are poor do not get the care, do not get treated?

Respondent: in this area people who are poor they get treatment, they all get treatment, but

Interviewer: elaborate more, what you mean by they don’t have enough money

Respondent: by the time someone fails to treat a sore throat, you know there are things that we just see, now like a sore throat, it’s not something that maybe someone spends his money on to treat, are you seeing, and not so much people will take time to treat a sore throat, they think it resolves on its own and goes, are you seeing, so when it progresses on something like rheumatic heart disease, really a few people can afford to do some of these surgeries even to keep on these medications for long, even a mere hypertensive patient finds it so expensive to buy his own medicine, even a diabetic patient, you find them crying after telling them that we have run out of stock of such drugs maybe they can try somewhere else.

Interviewer: okay, so now this moves us to the local system health care barriers, I am going to mention here some pieces, you will tell me which ones work for you, in terms of giving care to patients, and you will tell me some which do not work for you and you will tell me why, so let us start with administration and leadership at the district does it work for you here at the hospital, in terms of you giving services to the hospital?

Respondent: that one, it very much helps me because even if I ran out of something here, the district can support me, it can do redistribution of medicines and they get medicines so that one alone reduces my stock out period.

Interviewer: okay, so it is working for you

Respondent: for me it is working in good relationship

Interviewer: how about funding for healthcare in general is it working for you?

Respondent: the funding in the healthcare system is okay but the few challenges that are there, some of them could be the inefficiencies within the system, like maybe the human resources, if someone tells you to make an order for medicines and maybe I choose to make an order of medicines that are irrelevant in the community, what happens is that I will have expiries what patients need, they do won’t get it.

Interviewer: and how about the funding for rheumatic heart disease in particular?

Respondent: in particular, actually when it comes to ordering for some of these medicines, some of these things, we don’t go to the nitty-gritty of every disease that now this medicine is for caring for these people with rheumatic heart disease no, we try to consider what is on essential medicines, that is one thing, two we try to focus on what is very vital and essential then some of these non-essential we use some kind of principals to quantify and be able to procure some of these medicines we have.

Interviewer: okay, I am interested in knowing those ones that are very essential that you add on the essential drug list

Respondent: you see now the things that are very vital, we ensure that we always have Normal Saline and try whatever it takes to ensure that there are always fluids because its something that covers a very big number of patients, two, there are things that maybe serve like, gloves, cotton, goose, those ones, I will always ensure that they are always bought, because that is like first line of defence, so alone all those would consume a lot of budget but I know if all these ones I buy them, they still cut across to patients with rheumatic heart disease, if a patient comes here and we give him some of the treatment still they will use some of these as vehicles to transport these to the blood vessels.

Interviewer: okay, so let us look at the health care workers, in terms of the numbers and the quality of care they give, do you think it’s working for you, let’s start with the numbers of the healthcare workers working in this hospital, is that one working for you?

Respondent: yes, the work load would be much bigger than the healthcare workers available, the work load could be bigger but I see, they always sail through.

Interviewer: okay, how about the quality of care that the health workers give, is it working for you?

Respondent: if I am to go to my department here, I am very okay with the quality because literally I have not had any challenges for the past three years, yes there is no perfect system, unless it is only in heaven, you can always have mix ups here and there, but you always try to fix them and things keep moving

Interviewer: okay, let’s see about the waiting time of our patients, do you think it’s working for you, are you happy with it, the waiting time?

Respondent: it could be even shorter like I told you the volume of work is bigger than the staffs so it can be shortened if the volume of work is smaller than the staffs.

Interviewer: okay, so you are trying to, for starters, how long does each patient wait before getting services here?

Respondent: maximally it would be like 10 to 15 minutes

Interviewer: that's what they wait for now

Respondent: yes, if they are many, 10-15 minutes

Interviewer: okay, and let’s look at the medicines now, this is your department, particularly Benzathine penicillin, anti-coagulations and heart failure drugs, is that piece working for you are those drugs there?

Respondent: Benzathine penicillin is always there and sometimes it gets expired, yes

Interviewer: anti coagulation drugs?

Respondent: anti-coagulation like warfarin I think it has been out of stock for quite some time.

Interviewer: other anti-coagulation drugs, like cardiac aspirin?

Respondent: Cardiac aspirin, Clopidogrel, for cardiac aspirin is always available throughout, cardiac aspirin is among the essential medicine, so for that one is always in stock through out because it cuts across a bigger population of patients, so cardiac aspirin is always available but for things like Warfarin it’s always on and off, Clopidogrel on and off.

Interviewer: how about other heart failure drugs?

Respondent: like Digoxin and all that? Yes Digoxin is always available, some are available some are not.

Interviewer: so does this mean that this piece is working for you or its not working for you?

Respondent: it is not working, I would be happy if I had everything, that's my mission I would feel happy if a patient comes in and walks away with all the medicine he needs but when he wants three and I give him two, I am not happy about it because some of the patients they are going to swallow the two types and leaves out the third one and the therapeutic benefits is always small.

Interviewer: okay, I am interested in knowing actually why some anti-coagulation drugs like warfarin is not always there and it’s on and off, what brings that?

Respondent: some of these drugs, you find that, they are not on the essential medicines list, so when they are not on the essential medicines list, you cannot order for them, that is one, two, the level of care, as a Regional referral, we are not a specialised unit like you see heart institute is in Mulago, for it will always have these medicines like warfarin and others to treat these heart diseases because they are already specialised in that, but now us as a Regional referral and Mbarara is so unfortunate because of its location, it receivers those patients that are meant to be in heart institute but they would come here. That is what creates the inadequacy of the treatment that they don’t have but for our level of care, what they need we have it.

Interviewer: okay, so the reasons are because it is not a specialized hospital and some of these drugs are actually not on the essential drugs list, okay and now let’s look at health information medical record systems, is that one working for you here?

Respondent: the healthy management information system, yes it’s working.

Interviewer: okay, let’s look at the registers here, do you have specific registers for some diseases where you record for example, rheumatic fever, rheumatic heart disease?

Respondent: we only give time to things like HIV.

Interviewer: you only have separate registers for HIV?

Respondent: HIV, TB but these other ones it’s a one register.

Interviewer: one register, okay do you have the guidelines and protocols for rheumatic heart disease care, here in your department?

Respondent: the guidelines we have should be what is in the UCG and maybe some other guide that I might have.

Interviewer: how about these other guidelines designed specifically within the department like for HIV or TB, those charts that are specifically designed for rheumatic heart disease, do you have them?

Respondent: there are guidelines we use, the ones in the UCG, that's what we follow plus what we read but as a department we have not designed that guideline in fact we are in the process of designing what we call a hospital formula, in that hospital formula is where we shall identify the common diseases that we always treat and what is our recommended kind of treatment as per what suites the setting that we are in because we have realised that some medicines might be working in Jinja regional referral but when they can’t work on patients in Mbarara.

Interviewer: okay that will be a great idea.

Respondent: it’s something that might take time but we are doing it through the medicine and therapeutics committee.

Interviewer: so we are going to go through them again, administration you said it’s working for you?

Respondent: yes, administration at the district.

Interviewer: okay leadership at the district is working for you, funding for health care in general, you said its working for you, and the health care systems, numbers and the qualifications of the health workers and the waiting time for patients is working for you, and the health information system, medical records, you said its working for you, plus the registers, and the guidelines, it’s also working for you, that's it?

Respondent: yes

Interviewer: alright, let’s go to the last piece of questions now, do you think the patients get the care they need, especially the rheumatic heart disease patients?

Respondent: that is subjective to patient.

Interviewer: in your own opinion

Respondent: actually the patients who leave this place cured are more than, are far from they could even be more than 100 times, bigger than those who leave here with more complications to refer to Mulago for further management, so which I think they are getting the care they need, because if you have close to 400 patients a day, and you may receive a death of one patient or non, don’t you think you are doing a good job, this is a very small percentage of the 400, so they must be getting good treatment.

Interviewer: okay, talking about death, do you have any patient safety concerns, quality of care concerns, for example, have you had any preventable death here?

Respondent: but I think every death is preventable (laughs)

Interviewer: there are those deaths you really see and be like, oh this person wouldn’t have died, have you had those occasions?

Respondent: personally not.

Interviewer: okay, do you think there are many patients there in the community dying without presenting here in the hospital?

Respondent: that is true.

Interviewer: what do you think happens, why don’t they actually surface?

Respondent: some of them could be believing like I told you these cultural beliefs, others might be thinking that when they take their tradition medicine it will work for them, others might not know even that they are sick, then others could be in the community and could be having some of these diseases, but when they go to these health facilities, maybe the lower healthy facilities, they don’t find solutions, so they now get to know that even if they go for further management, there will be no solution to help their problems.

Interviewer: any other reason?

Respondent: some of them maybe could not be having money, I am not meaning money to pay, I mean money that could help to transport themselves to hospitals and someone cannot be lacking something to eat and they get money to present to hospitals, this normal one will first eat, then if they are to die the die.

Interviewer: okay, so poverty, cultural beliefs, ignorance because you said that some of them they might not know that they are actually sick, okay is that all you can think of?

Respondent: I told you five.

Interviewer: you told me five, cultural beliefs, poverty, ignorance of their diseases...

Respondent: others have a bias towards like I have told you, if they go to the lower health facilities and they fail to get solutions, they know they will never get the solutions

Interviewer: Now, the last thing in your own opinion, what are one or two important things you think ministry of health can do to improve the outcome of our patients

Respondent: in matters of rheumatic heart disease?

Interviewer: in general, you can talk about it in general even in this side of rheumatic heart disease

Respondent: one thing about is it should get more if ministry of health can see disease don’t read books, you can see even of late we used to say that young kids don’t get typhoid, isn’t it but even we see these days young kids with typhoid, so there is much to invest in research, there is a lot to invest in research so that they can get the new trends of management of some of these diseases are even preventable, so there is that need of even sensitizing the community, and some of these very preventable diseases that could even be leading to some of these problems that we are having and I know that one will reduce on the cost burden of the health care system

Interviewer: okay, any other, apart from that?

Respondent: most of these diseases are preventable so if they can give those preventive measures which could be, like they have done with malaria, give out mosquito nets then do that and all that, then again sensitize, and for people who have had heart diseases like those hypertensions, those are preventable diseases, people who have diseases like maybe diabetes, yes it is genetic component but you can delay it, but all that comes on how you empower the community with knowledge.

Interviewer: any specific thing they should do as far as rheumatic heart disease is concerned?

Respondent: rheumatic heart disease being among the cardiovascular diseases that we are having, the only thing I can ask for is like the heart institute in Mulago but Mulago alone may not be able to manage some of these diseases because of the problem of numbers, these is an upward trend to some of these diseases maybe rheumatic heart diseases, so if at a regional referral if some of these units are set up and they are well equipped with whatever they need, this would not be a problem rheumatic heart disease would not be a problem.

Interviewer: that's great, is there any other thing you would want to say before we finish?

Respondent: nothing, that's is all I would want to say.

Interviewer: okay, thank you so much, this is participant WH010, thank you so much for accepting to be in this interview.