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

Interviewer: Good afternoon,

Respondent: Good afternoon,

Interviewer: Thank you for accepting to be part of this study, we would like to determine how to better provide the care for patients with RHD, so we have a few questions to be going through. There is no right or wrong answer, so feel free to answer every question and then every data collected will be confidential and it will not be linked to your identity for any comments made. Ok, so tell me about yourself

How old are you?

Respondent: Am 36 years old

Interviewer: Ok, your qualifications?

Respondent: I have a bachelor in nursing science

Interviewer: Ok

Respondent: Senior nursing officer at lira regional referral hospital...

Interviewer: Ok, where did you train from?

Respondent: I did my bachelor from Uganda Christian University Mukono

Interviewer: Ok, how long did you, when did you qualify?

Respondent: I qualified in 2011

Interviewer: Ok, so how long have you been working here?

Respondent: As a bachelor nurse so far, I have worked as nurse for about 12 years in lira but a bachelor nurse, I have worked for 4 years

Interviewer: 4 years?

Respondent: yes

Interviewer: But 12 years in total

Respondent: Yes

Interviewer: Ok mainly about your work environment, which patients do you usually see?

Respondent: You know as emergency department, we have to, and we are supposed to strictly work on emergency, casualty then critically the ill patient but as you work in the hospital, you have to go on and do the policy of the hospital. The policy of this hospital says that every patient who is admitted in this hospital must pass via emergency and therefore we see a wide range of patients, we get the casualty, we get the accidents, we get the critically ill and then any other patient that the doctor sees, wants to see and the availability of the doctor is there in the emergency ,we allow them in .And that is why am saying our emergency and casualty department in lira is quite different because we go with the policy of the hospital, that is what they thought would meet their criteria

Interviewer: Ok so all those, which are the common illnesses that you...come across in your day to day care

Respondent: Yes, the illnesses apart from the accidents, the illnesses we have are mostly medical, that tense comes so much, during Tuesday, that is the clinic day, these days we get patients of hypertension, diabetes, we have the many heart issues, the RHD and ah...we have cancer patients who come and then we also have the patients with liver cirrhosis, those are the ones that are quite many in our registers meanwhile there are also other cases and then of course HIV patients, they come

Interviewer: Alright but then what of by age group, which age group do you usually accept into your department?

Respondent: we do accept any age group

Interviewer: Ok, also it cuts across

Respondent: It cuts across both children, adults and elders

Interviewer: Alright, tell me a bit about your training on RHD and did you receive any specific training at school?

Respondent: On RHD?

Interviewer: Yes

Respondent: We did RHD when we were doing medical surgical training

Interviewer: ok

Respondent: And we did it just as a disease, I did it in my training as a disease but not as a specialised course or workshop or anything and then as a nurse, we go so much on the nursing care, part of the areas of RHD because that is where we so much dwell on

Interviewer: Have you received any training since graduation?

Respondent: On RHD?

Interviewer: On RHD

Respondent: No

Interviewer: No?

Respondent: Not

Interviewer: Ok, how many patients with RHD do you usually see like in a week?

Respondent: In a week. Ohh my God, the numbers, they were few and because it wasn’t so much of a concern when I had just come they were a little few and they came in and some got out un recognised, we just register them like that but eventually when this research study came in and there were people around here who really created awareness, I would say so it really raised the number so far in a week, a part from those ones coming on the treatment, we can get like 13-14 and most of them are children

Interviewer: That is quite a big number

Respondent: It is

Interviewer: Yes, so are these inpatients or outpatients or both combined

Respondent: I would say outpatient are more in number because most of them came in as the awareness was created and so they come in when they would be managed from home, they just come for their treatment and go back but the inpatient are always few, they are like 5-3,like that

Interviewer: Ok quite interesting

Respondent: Yes

Interviewer: So, something like about what you were taught, what is your understanding of what causes RHD?

Respondent: The cause as now as a medical personnel of course, I know its caused by streptococcus the bacteria that causes RHD and briefly what I learnt from it is after getting that infection as a sore throat gradually when not treated which is mostly not treated in our culture, they do whatever they feel in the community, so when someone goes into RHD and once you get this disease, it’s not their own act, I know there are specific parts that they attack ,the reason why they attack those very parts am not very clear with it or conversant with it but I know there are tissues that they like and they can dwell on especially we have the neutral valves that normally they go there and settle there and cause the scaring of neutral valve, and there are also another valve, I think that is the noetic valve, there are two valves I know but am not sure about it.I know that when this disease is not treated and it stays in the heart, that is what they do and they cause the scaring and once the scaring takes place, then there is a weakening of the valves and then there are many things happening, complications start coming in but now according to my training, I know that with antibiotics, these conditions can be handled, it can actually clear and once you are getting treatment, I know it’s not about anti biotics you can be given, if complications starts like joint pains, the sore joints, then those ones you are supposed to be given anti-inflammatory and I think it’s choice of aspirins which sometimes is given in a little higher doze. others go, if its severe, they even add steroids as an anti-inflammatory, that is what I know and other heart drugs I don’t want to talk about them because am not sure but that is what I know as a nurse that I should also see that my patients receive them despite my nursing care plan and then in the nursing care plan, as I plan for my patients with RHD? What am i supposed to do? The aims of management are like four, one is to relieve the pain because they come with pain and then two is to allay anxiety, they are very anxious and then three I have to make them to, to how do I say, you know they always complain of getting tired so I have to get away of making them gather some strength and see that they can do an activity at a time and then of course the last one creating awareness, counselling and making them, know what it is health education and what causes RHD, those are my four aims of management

Interviewer: Thank you so much, so are you aware of the link between sore throat and RHD?

Respondent: Yes, I do, am aware about that

Interviewer: Ok, what do you know about it?

Respondent: Yes just like I said, when children are growing, deaths normally occurs so much in children though some adults do get sore throat as well, but I have seen children, very many children, children who are coming with sore throat and once they come with sore throat, normally those one who turn to the hospital get a better chance of getting anti biotics but there are those ones in the villages that they believe that scrapping those sores in the throat and creating wounds and then just give them mouth gaggles, sometimes you are just treated with local medications is also there and what does this take, it eventually leaves the bacteria to travel where they want to go. Here is a spread of the bacteria system basically and once it goes in the system, the heart faces with paths that when they reach in, they cause a problem and that is what I was saying that they go to the heart and I don’t know why they like the valves, that is what I know about that

Interviewer: And what were you taught that can be done to prevent RHD?

Respondent: In the prevention of RHD, one, we are taught of oral hygiene and when we were giving health talks to the community, we need to talk about their oral hygiene and then also knowing that there is already a problem, a child is complaining of pain in swallowing or even tells you that there is a kind of inching in the throat, you must seek the medical attention because once they go to the hospital. It will be checked and then the other thing is proper nursing care or proper medication

Interviewer: So, you mean by properly treating the sore throat?

Respondent: Exactly

Interviewer: OK, what else

Respondent: What I can talk about also by doing investigations to check because now we know from that there can be a problem and so we needed to do this to check the state of the heart to check systematically if there is still the bacteria in the system, then further management is given

Interviewer: ok and then do you know about the treatment options for RHD?

Respondent: Yes, right now what we are given, not even as I was trained, they said the best drug that could clear streptococcus not only for RHD but the drugs that clears the streptococcal is the Benzathine penicillin

Interviewer: Ok, so how often is it given?

Respondent: We give monthly to the patients but about the diseases, it’s given by kgs, it’s calculated per kg

Interviewer: Any other treatment option

Respondent: For RHD?

Interviewer: Yes

Respondent: Am not sure, a part from the antibiotics which is the major drug and the anti- inflammatory that we have talked about, the aspirins as an anti-inflammatory built in rare cases, we go even to give the steroids

Interviewer: Ok, alright then what is your understanding about the long-term prognosis of RHD?

Respondent: Wow! It’s not very nice both laughs, the prognosis is good or the few patients we have seen with treatment, their prognosis has been good especially those that come in the early stage when complications haven’t started so but issues about prognosis despite that am a nurse. I know that there is an author of life both laughs...so it’s a bit of trick because it’s funny not funny though but some of our patients even when you talk to them and we give them treatment and they have gone home when they miss out on whatever we have told them, days will leave you and that of the prognosis should have been better, comes back later when it’s worse and so it’s both sided from my side, I may see that the prognosis is going to be fine because the way I saw my patient, I know that my patient can pick up but the other side, as we manage, other people don’t take it in the way we told them to do.

Interviewer: They don’t follow whatever

Respondent: They don’t follow and then therefore the prognosis starts to be bad

Interviewer: Meaning for those who don’t appear for the medication the prognosis is bad and those ones who really adhere to their treatment

Respondent: Exactly to their medication and follow up days

Interviewer: Ok could you tell me about the last patient you saw with RHD

Respondent: like both laughs...yes this is interesting, I think I will talk about my own patient. I think it’s very unfortunate that whatever you are the medical personnel, there are things you don’t miss out, I used to see those patients and I used to manage them as they come to the clinic, but the last patient I saw is my own daughter, who is the daughter to my brother and she could tell us that she gets tired but she never told me, she could tell her friends, you people I get tired very fast when they are running in the stairs, she complains and they took it for granted but one day when she came with palpitations and I saw her losing weight, from school then when she came she told me, I also get tired very fast, she could not tolerate many activities so I gave her to mop the house, as she was she was mopping, I saw her get palpitation and sweating, that is when I realised that she is not fine and when I brought her to the clinic to be checked, they told me that she has a RHD and that was very bad for us, it was not a good news, so that is the last patient I saw

Interviewer: So other than the easy fatigue ability and all that, was there any other symptoms she was complaining about?

Respondent: Yes, eventually when I asked her she told me she had the ankle, ok she was first at school, when she was in her O’level, she could get swellings on the legs that could start from the ankle and then comes to the knees but it doesn’t reach the knees and then when we give an anti-inflammatory it goes back, the other time again the thing comes and we could not think we were treating her as light, or other thing some even said she was charmed, so we had those issues with her until when we were told she had RHD, that is when now we started reflecting on the symptoms and signs that she used to tell us because she could get those things even sometimes without fever and then fever comes, like that and then when I talked to the mother, the real mother, she told me that she had sore throat twice when she was in her primary and she got symptoms of getting tired very fast at that time but eventually treated her with malaria and they said she is stable

Interviewer: Ok

Respondent: Yes

Interviewer: But I hope she is doing well right now

Respondent: When she started her treatment in the first week, she wasn’t fine, she was anxious, the anxiety made us not to see any improvement

Interviewer: laughs

Respondent: Not until she got her second doze with the counselling, now she is fine

Interviewer: That is good to hear

Respondent: The pain has gone, she is happy, she is feeling well

Interviewer: Ok so what is the average age of your RHD patients?

Respondent: ...she is 16 making 17

Interviewer: I mean like all the patients who come here

Respondent: That patients who always come here?

Interviewer: Yes

Respondent: Here I think most of them come to 17

Interviewer: 17?

Respondent: I have seen very few of 18 but mostly of 17

Interviewer: Ok, are most of them in school or they have abandoned school because of their illness

Respondent: Most of them are not in school

Interviewer: Ok

Respondent: Most of them are not in school and we try to counsel their parents to let some of them remain in school but because they fear, you find them that they first let them to stay home not until they see that they are fine but those ones who are very ill, they are no longer at school

Interviewer: Ok

Respondent: Yes

Interviewer: Then when you talk to them, are they generally aware of the link between sore throat, acute rheumatic fever and RHD?

Respondent: No, not at all

Interviewer: Not all?

Respondent: Very few are aware but with the bit of sensitization that I have made them actually to come to the hospital, the few are aware but the awareness is not yet so broad, it’s a little minimum

Interviewer: So, what sorts of symptoms do they describe when they reach here?

Respondent: Yes when they come here ,ok...some of them, they start telling you that they have done local tonsillectomy and then others even tell you that actually you see that they have brought a child with pains on the joints, fever and they have been treating for malaria but now eventually when they strengthen

Interviewer: Ok, is local tonsillectomy so common around?

Respondent: Very common

Interviewer: Ok, on average, how many children like the percentage of them who have local tonsillectomy?

Respondent: If you get children from 2 years to 6, you pick 10 of them, either they are among them, you might get only 2 or 3 who has not done that, meaning that the majority of our children go the local tonsillectomy

Interviewer: So, do they do it or is it like a form of a treatment option that is acceptable in the community

Respondent: It’s a treatment option, very acceptable in our community that even in the hospital now, when you go to the children’s ward, you will get that diagnosis called ‘’Gidwon sepsis’’ meaning that they have done tonsillectomy or tonsillectomy and it has caused sepsis, so they call it ‘’Gidwon sepsis ‘It’s terrible that even those ones who have not yet done it, when they come to the hospital, they still sneak somewhere and do it, it’s that bad

Interviewer: As a health worker, what do you tell this parent who has done that?

Respondent: Oh my God! Sometimes you have to beat both laughs... But now you can’t beat because there is one thing, no mother will do something to a child to kill, and they are doing because they think they are helping their children, so we need to talk to them, we always have to talk to them and we should always have that patience with them, that when we tell them the experience of or what the child will go through later, they will learn not that they will all learn at once but I know time will come that the majority will take it up because they don’t do it for harming their children but they think they are helping and yet they are harming, so we have to accept them as parents and we have to appreciate that they are doing it for the betterment of their children but we have to tell them the better way of doing that

Interviewer: So, do we usually have these talks around?

Respondent: The talks?

Interviewer: About the local tonsillectomy

Respondent: Yes, the unfortunate part of us, most of the nurses we do have children and so when we tell them they say that these people lied to us they do theirs and because we have children

Interviewer: laughs, so we also have nurses who are doing local tonsillectomy?

Respondent: Exactly, even those nurse do, so I don’t know what we are going to do but I know that eventually sensitisation comes out and awareness is created and still we are not going to rule it out to be done but the percentage should come down at once, and once the percentage comes down, we shall score better just like HIV, before the awareness, it was terrible but now we have the awareness.

Interviewer: I hope that will work for us?

Respondent: It will

Interviewer: Generally, about follow up do these people, really is it good? Is their follow up and adherence to medication good, the patients you see?

Respondent: I think for now we are about 79%,especially for those who come in early stage, those ones who do not come in the early stage, even the fact that they know when they are very sick already or they brought their children when they are very sick, you see even picking up at that time for that child to be well will also take time and so they lose patience and once they lose patience, they assume the treatment is not working so they choose other options, they start to go to the witch doctors, or they go to another hospitals or clinics where they are going to deceive them and then eventually they come back, either with a dying patient or they don’t come back anymore, when you follow up, the child is no more

Interviewer: So meaning that those ones with like...

Respondent: Those ones who come at an early stage are picking up

Interviewer: Ok and they are turning up and they end up adhering?

Respondent: They end up adhering, the ones who come with already the generalised swellings, they have oedema, they tend to take long to recover and so their adherence pattern is also poor, it’s poor

Interviewer: So, what sorts of barriers do they commonly state they get to the care they need?

Respondent: Actually...

Interviewer: what the patients tell you

Respondent: Just like I have told you, they still don’t believe that ah...when they come at late stage and they get treatment, once they get the first treatment, the second treatment, you know now that gross earning and with the medication, we now have that challenge, the drugs they need are many, there is also the pill burden of drugs, you know because the heart drugs are already there for the heart condition, hypertensive condition part of it, maybe they have the swellings, the uretic that should be taken and sometimes really some of these drugs are not in the hospital, they have to buy, normally when you subject them to buy drugs, normally our patients disappear because they are going to the clinics that will provide the drugs whether it’s a wrong drug but they have been provided, they don’t think about how much they have paid there. knowing that I have come to the hospital and am not paying for consultations but the money I have I can use for buying, they just assume that the clinic is better and so that really affects their adherence, lack of drugs in the hospital is a challenge

Interviewer: Then what issues do they commonly complains about like the care, the challenge they get as patients receiving care?

Respondent: Sometimes patients are many and so when they come, they have to take long on the line and the fact that they are taking long on the line, they still try hard and sometimes they feel that they are neglecting them, of course when the critically ill patient come, they still have to leave you and go on the other because we even have few, we have few nurses, there are no specific nurse who are ready to handle specifically them, sometimes they are to wait on the line and others have managed like their coordinators and then also doctors are available to see them and sometimes the doctors are not around and yet they may be having like a complaint and so that is a challenge because they may have to come back and yet the distant is long so that is some of their challenges

Interviewer: And then what about the ones you face as a health worker in managing them?

Respondent: Yes, it’s not even far different as a nurse, I would feel that my patient is reviewed by a doctor but now there are situation that my doctor, my very doctor who is supposed to see my patient is very busy because he or she is alone and so he has to run up for emergency and this patient has to wait and sometimes they go without being seen or I have to decide and make a decision and start the patient on treatment or I consult my doctor on phone or else this patient needed to be seen by the doctor, that is one, then two, the drugs, when they go, there are days that even the drugs that are supposed to take like just aspirins is not in the hospital, they are supposed to buy and some of these clients are un able to buy and this could be the reasons why they did local tonsillectomy from home ,they didn’t have transport to take them to the nearby health centre or even to buy a drug to treat those inflammation, the sore throat’, so therefore they have no choice, they do it because they are willing to do it but as a solution to their problem and then lastly, most of my patients are children and I need to separate them from adults but because the space in lira hospital. is not there for children, even when we admit them in the ward, we admit them amidst the adults and my children’s ward where the children’s ward are takes them up to about 4 years so you see now 4 up to 16 where I was telling you 17 years, where do I take them, to the medical adult ward which is very bad for my patients

Interviewer: Yes

Respondent: Yes

Interviewer: Ok, I understand and then what sorts of barriers do you perceive that they face in getting the care that they need, what you feel they go through

Respondent: The barriers here are not so many, the barriers I would bring out

Interviewer: Like you are looking at the patients views on your perspectives

Respondent: The barriers here just you know when there are children, they are very innocent, the barrier we get is on those bigger children say from 12,13,14,15,16, most of them believe they are not going to get better with a lot of anxiety being among them, though they complain that their medications pains and because they want to get well at that age, they also come back but there is that anxiety that remains in them that communicates to them that heart condition remains heart condition and they will not get better any time soon and this life sometimes like my daughter, it really created some barriers between me because which word would I use to convince them, convince her that she would get better not until I bounced her to another person for counselling her, so there is that barrier to believe that they will get well soon

Interviewer: So, you feel they are not getting enough counselling?

Respondent: Exactly

Interviewer: Ok, what else are they missing out that they should have gotten, that you feel they should have gotten

Respondent: A part from that counselling is paramount and their medication, I think even proper investigations are a challenge because like I told you, once other things are to be investigated apart from the ones the hospital provides, its needs money and maybe they cannot afford and that is really a big challenge

Interviewer: Ok

Respondent: Yes

Interviewer: Ok, something to do with the local health system, tell me about you administration and the leadership in the district, what do you think they are doing well

Respondent: In the management of RHD?

Interviewer: Yes, general, at the hospital or ministry of health, do you think that they are doing well?

Respondent: I would, they are not

Interviewer: Why?

Respondent: You know there are for ministry of health, I would say this, ministry of health eventually focused on the other conditions, for instance since I have been, since I have up graded my studies, you know global health, what it talks about, people are on maternal child health, people are dwelling on mothers and their babies, the neonates and then what also came in was HIV, that one is also there, so global health is focusing on other things, RHD has never been on the policy and yet me and you has been in lira hospital and you have seen the population of people develop hypertension, people who develop these problems and then they eventually die. Very many people have died because of RHD, all the heart conditions, almost we have, when you dig down to their history, they have these issues and these are the young teenagers, people who are brilliant, people who should have taken us up.so I was seeing that other disease. I would talk about this RHD disease, why not come as a policy, also so that we also do a study in it, so that we can also develop from there and we put its sensitisation so that people are helped down here because right now in the hospital, when we want investigations for RHD conditions, you will look for this machines and they are not there because they’re not catered for in the policy

Interviewer: Ok do you think it’s the administration issues or the leadership in the district

Respondent: It’s not the leadership from the district, it’s right away from the head

Interviewer: Which is? The ministry of health

Respondent: Exactly

Interviewer: So, what can you tell me about the funding of health care in general or on RHD in particular?

Respondent: No, I will talk about the funding of health, health facilities you know these funding comes when they are directed to specific issues. There has been no funding that comes to the hospital and they say you can use it with what you want, they come when they are directed on specific programs, I have always sat on meetings, we have always done the budget together but there has never been any funding for RHD

Interviewer: Ok, why is it so, is it because it’s not placed in the budget

Respondent: It is not us, it has to run with what the ministry of health is focused on, maybe how it can come out in this hospital, I can come out maybe to take up a research in lira hospital and then we take up a research as lira regional referral, then when we do the research, we write up a proposal and then they can allow to fund us and then we can get money but for the money to be sent from there, right now RHD is not in the policy of health management, not any, there is nothing from me, as a study, they are not even aware that it’s there, I think as a major cause of deaths

Interviewer: Ok

Respondent: So, they are not aware and so they cannot send us money that is what I could say, maybe if they are aware of RHD then the money they would pay for RHD is here

Interviewer: So, in which way can we make them aware?

Respondent: We can make them aware by doing a research because we have these patients here in the hospital, we can take up a research, after taking up the research as a hospital, we present our research to them, with the study, we are making, after finishing the study, we present it to them and then we decide together because we shall let them know what the cause of mortality in the hospital

Interviewer: Ok, what about the health workers, do you think that the numbers of the health workers are enough

Respondent: Of course, the number of the health workers are not enough because when you compare the ratio of patient to nurses. I think I would say one nurse is handling over 20 patients, during the time of duty schedules per day and that is too much, it takes of out what I could, how do I say, the quality of services is reduced, we are only doing the quantity

Interviewer: laughs, so how is the waiting time here?

Respondent: Wow! Of course, it’s long, very long

Interviewer: What about the quality of care

Respondent: The quality of care, as someone wears off to see 20 patients, the quality of are also reduces as I had told you that the ratio of patient is 1: 20

Interviewer: Quite a big number

Respondent: Yes

Interviewer: And then do we have medications available for these patients?

Respondent: It’s on and off, I would say so, not very reliable

Interviewer: Ok, how about the diagnostic, like echo, is it available, readily available for the patients?

Respondent: Yes, for now those ones we have, it’s either provided or someone is sponsoring it for them, I see it’s still available, I see the hospital itself does not have

Interviewer: Ok, are the services free?

Respondent: Yes, right now they are getting free services

Interviewer: Ok, so tell me about your record system, how is it, is it really working well for you

Respondent: Our records system is not so much very well working for me, as an in-charge, we have a register in an emergency department where we register patients we have seen but I know when we go for the data entry, I don’t see those very patients being captured as in RHD, they are captured as other illnesses

Interviewer: Meaning that they are not captured anywhere

Respondent: They are not captured anywhere as RHD and yet that would also be when we go for, how do I call it, when we go for the annual report presentation, we would also say that there is something that is making deaths or something making children very ill in lira regional referral if it was specifically captured as RHD but now it’s captured under other illnesses

Interviewer: So where is the problem.is it at the records department or the way it’s captured from the register?

Respondent: No, it’s..., the problem is nowhere, I would say so because it’s not yet striking, it is not yet been put as an alert or attention to anybody, nobody is aware, yes there is a problem called RHD

Interviewer: Ok, or maybe like in the health information, that management tool

Respondent: It’s not even there, it’s not in the management tool

Interviewer: So, it can’t be recorded

Respondent: It’s not in the tool, so it cannot, that is why am saying that no one is aware

Interviewer: But you recorded it in your OPD register

Respondent: Yes, and it’s now under other illnesses

Interviewer: Ok, I see, so do we have guidelines and protocols for RHD care?

Respondent: No, we don’t have

Interviewer: You don’t have?

Respondent: Yes

Interviewer: Ok, we have talked about this but I also want to know like what you think that leadership in the district is doing well. Something at least they have done well?

Respondent: The leadership in the district or hospital?

Interviewer: In the hospital here

Respondent: I think our director has been very positive because when we requested that the children with RHD should be provided with space that they don’t come up in the hospital and line up in the hospital to wait for the other OPD line up, he was very positive and he identified the space, he said, he ask in the meeting where can we take this and the people decided, they said we have a room or they can share with the emergency people, it was very positive and we have a specific corner for these children, so that when they come, they come straight and get their treatment, those ones who are coming for review and then they go back, they come get their treatment and then they go back and the nurses in the emergency are aware of them, immediately they present their cards, they know that this one should be handled and she already goes back

Interviewer: Ok, like funding for health care, what have they done well according to you?

Respondent: Concerning RHD?

Interviewer: Yes

Respondent: Paying for staff salary...both laughs

Interviewer: so that is the only thing they have done well

Respondent: By giving us salary and then they have done fairly, poor, fairly, poor, I don’t know, the drugs are fairly available

Interviewer: Ok

Respondent: Yes

Interviewer: Ok, what about the health workers, what do you think you are doing well?

Respondent: We are always available, we have always been with them, counselling them, we have shown them love and care, the parents are friendly, they call, communicates, some of us has given them our number, they call to consult and then we tell them what to do, I know that we are doing well

Interviewer: What motivates you to go on working?

Respondent: Personally, what motivates me to work I would not say even anything but it’s a passion, I like my work, I just like it and above all I just love to see children or patients recovering so it’s just passion in me

Interviewer: Ok, you talked about medication being available for the patients like for a few of them

Respondent: Yes

Interviewer: Do you have BPG readily available

Respondent: BPG...

Interviewer: Benzathine penicillin

Respondent: Benzathine penicillin yes, true

Interviewer: ok, what good has the record department done?

Respondent: Just like I said, our records do very good data, I was in...i went for evaluation of last financial year in kabale, lira was one of the best hospital who presented very well and I think we are doing well, only if they would add on to their records and the data capturing may add RHD, I think that we would strike because in that meeting, there were staffs from ministry of health and they would look at that and say Wow! There is something we are not aware of and that would bring us out, yeah

Interviewer: That is very true. Ok concerning perception of patient outcomes, do you think that they get the care that they need, like surgeries?

Respondent: Most of the parents who are here on treatment really believe that they are getting the care that they need because we are counselling them, we tell them exactly what has caused what they are seeing and the complications that thing brings and then what we are going to do. When you talk to them they understand but sometimes when it now comes to the need for surgeries, you find that our hands are tied up, we need to start talking about Mulago, when they hear about Mulago, what rings to their head is money and then of course we have very few, we have very few patients who would need surgeries but still the few we have when you tell them that it’s not very good, they start fearing that they are going to pay

Interviewer: Ok, any patient’s safety and quality of care concern

Respondent: Patients safety yes, we keep our records, we don’t stigmatise them, they are free with us, we tell them this is not a disease to be stigmatised on and it’s a disease that has come, they adhere very fast and because they adhere very fast, I don’t see that there is any big problem

Interviewer: Ok have we had any preventable deaths in the hospital

Respondent: Preventable deaths

Interviewer: Yes, like how would it come about?

Respondent: What I can say, the preventable deaths, when we have patients who come, who are referred are not specifically RHD, sometimes our patients are referred from the nearby health centres when they are really having complications just like I told you that ah...maternal health care is still a very big issue, you get a mother with APH coming in when ,when they come in sometimes they want to go to the theatre and when you ask them, their Anaesthetic drugs is not there, you feel something should have been done and the drugs should have been there, by the time you get the drugs, someone goes to cardiac but now that is very late surgery and you see someone dying, you get it

Interviewer: Yes

Respondent: Those kind of deaths would have been prevented because if they were referred and immediately entered the theatre and surgery is done, that would be good for us, other things are like right now we don’t carry out heart surgery and if there is any problem that needs urgent heart surgery, and we are unable to do that

Interviewer: Is it because of the equipment or the...

Respondent: It’s the specialist, the staffs, the specialised staffs are not there for that, equipment are not there, we are not ready to handle some of the emergencies and so what will happen, deaths will occur

Interviewer: Ok

Respondent: Yes

Interviewer: That’s really very sad. Do you think that patients are dying in the community without presenting to the hospital for care?

Respondent: Very true

Interviewer: What do you think is causing this?

Respondent: We also have what is called ignorance and we also have what is called traditional beliefs, cultural beliefs, there are still people who believe they are being charmed and because the patient does not have a voice they die. We have seen very important people who would not accept to die but because now he or she was in a situation where he has no strength for himself to run to the hospital, end up dying at the witch doctor’s place and then eventually the relatives come and tell you, you know he was a teacher and so we wanted this not to happen and when you start asking why didn’t you bring the patient to the hospital, you know we were now trying but we had taken him for prayers somewhere and yet you know that person would not accept to die there but because he was helpless, they carry you and take you anywhere, so I believe they are still there

Interviewer: Ok, so in your opinion, what are the most important things ministry of health should do to improve outcomes

Respondent: One, ministry of health should change the structure, the structure of health management right away from personnel to the housing must change, for instance, lira regional referral hospital was built in around 17 or 15 something, am not aware about that the very structure are there, where there are the ones we are still using mostly not of late that the new ones are coming in but in the staffing, structures is like ‘’oba’ ’for which year, the staffing structure has not changed and yet the population of Uganda is rising, the more the population rises, the more the population of the hospital will go up with very new diseases that are coming in and so the staffing structures should also go up to compensate the weight of the patient in the hospital. I will talk about it not so much talk about the facilitation because if we are not overwhelmed, someone will not also think of so much being facilitated, someone will work at a strict time, go out and do something else but because patients are very many and we are few, we tend to take longer time and by the time you are going home, you cannot do any other business to supplement your salary and so we ask for money which money is not going to help us. We need more staffs, so we work and get less tired to renew our brain to do other things that supplement the little salary that the government gives us to make us move on and indeed health will not breakdown anywhere

Interviewer: Ok, what else do you think the ministry of health could do?

Respondent: The ministry of health should also know that as the population grows, even the supplies of medication should also increase so that we can manage these patients and then follow up. ministry of health should learn to follow up, there are people put there are, people who come for follow up and see what is happening, they should come and interact with the staffs, there are people who should come and go to the a data base for us in emergency and go and go to the wards and see your records and see every ward with its report because for us in emergency, we have every reported, our report tell us, tells people, how many people we get with RHD and how many patients do we get, then you get that there is also RHD and I tell you on this financial year, we added like 100,one financial year, in these, how many have died, we then follow up.so if there was that follow up, they would really capture these things earlier before us. But now I see as if follow up comes and ends up in the office and they are not aware.

Interviewer: Ok, thank you so much unless you have something else to add on

Respondent: Something else to add on, I just feel like I could request for the ministry of health if possible to start training a specialised nurses, we have doctors who are specialised and we have nurses who are willing to specialise as well so that where the doctor is not there, this specialised nurse at least have something in common they share in the, management of specific patients, ok for instance like in Mulago, we have nurses who have done nursing and now they are working at the heart institute, when the doctor is not there, she knows what to do but here in lira regional referral, it’s not there. We are having knowledge we got from school. What about the day’s patients will change position and the physician is not around, what will I do, I will have to wait or I mess up the patient or I refer the patient but before I refer the patient, I needed to have done something. So I will just request for training for the capable nurses and then willing nurses with compassion to come back and help the community, that is all I could say and yes, that is all I would say and really thank you for the people who introduced RHD management in this hospital, they are doing a good job

Interviewer: Ok, thank you so much for giving me your time and to participate and I know your views will really help us in improving care for the patients with RHD

Respondent: Thank you.