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

Interviewer: Thank you so much today is the 8th January 2019 and the interview is being conducted in lira regional referral hospital, family planning unit, in the doctor’s office. The study is mainly to determine how best we can provide care to RHD patients. We don’t have any right or wrong answers so feel free and be frank with all your answers and then all that we get here today is confidential, none of our reports will actually reflect your name or your identity so I would love you to be free with your answers. So we can start.

Respondent: ok

Interviewer: you can tell me about yourself, how old are you?

Respondent: I am an old man of 51 years now

Interviewer: 51?

Respondent: yeah

Interviewer: And what’s your qualification?

Respondent: I hold advanced diploma in medical education, am a health tutor by training. I also have a diploma in clinical medicine.

Interviewer: ok

so, where did you qualify from, where was your training done?

Respondent: the initial training was in Gulu for clinical medicine and then for medical education, being a tutor was in Mulago

Interviewer: Mulago?

Respondent: yes

Interviewer: ok how long ago were you qualified?

Respondent: For Makerere University, that was around 2003

Interviewer: ok

Respondent: yes, that’s when I got my diploma in medical education

Interviewer: and for clinical medicine?

Respondent: clinical medicine was way back in 1994, I think you were not yet born... laughs

Interviewer: no, I was already born, I guess I was around 4 years... laughs

Respondent: that was when I qualified

Interviewer: and how long have you been working here in LRRH?

Respondent: in lira regional referral hospital I was transferred to lira in 2004 January from Soroti hospital where I served for 10 years ? Laughs Ok meaning here you have been for more than...

like 14 years

Interviewer: 14 years? Ok quite a long time

Respondent: yes iam actually among the oldest people around

Interviewer: laughs... so which kind of patients do you usually see? Which are the commonest illnesses that you meet in your day today work? m... since iam not a specialist, we attend to all sorts of patients that we have around this region ranging from malaria, pneumonia and tuberculosis, diarrheal diseases, STIs, the rheumatic fever we are talking about, suspected cases and others, quite many, including injuries...

Accidents...

Respondent: accidents

Interviewer: so do you see like a specific age group or you cut across

Respondent: as I had said that iam not a specialist, we keep rotating

Interviewer: ok

Respondent: today you are attending to children, or this month you are attending to children, the other time you are attending to women, you can go to male, like that.

Interviewer: ok...so you kind of meet every group?

Respondent: you meet all sorts of patients

Interviewer: ok ...so during your school time, did you receive any specific training on rheumatic heart disease?

Respondent: yes, within the training, you know the training is broad

and it’s supposed to cover everything, and of course rheumatic heart disease, ok let’s say rheumatic fever, start from rheumatic fever of course rheumatic heart disease will now come in as a complication of... streptococcal bacterial infection, so all those bacterial infections were covered

Interviewer: ok and then you are aware of the link between sore throat and rheumatic heart disease right

Respondent: yes, yes yes

Interviewer: what do you know about it?

Respondent: I know the sore throat is a step... a beta hemolytic streptococcal infection which is more common around the throat...although not only throat, even on the skin of the patient, it can affect any part of the body. But when it attacks the throat and the patient develops antibodies against the infections, and then the antibodies will clear the bacterial infection, but as time goes on the body will recognize the antibodies it had produced as foreign again it begins reacting to the antibodies it had produced against the beta hemolytic streptococcal infection so, it is the antigen antibody reaction then which becomes a problem not only in the heart it can be in the brain, can be in the heart, can be at the joints it can be in the kidneys, those target organs, and if it affects the heart then we have rheumatic heart disease, when it is the joints then we have rheumatic arthritis

Interviewer: ok

Respondent: yes,

Interviewer: wow

Respondent: that’s what I still remember when it’s in the brain then many of our patients present with rheumatic fever disease, they present with symptoms related to rheumatic fevers

yes

Interviewer: ok, let’s move a bit aback, I mean slightly, other than the training you received from school, did you receive any other trainings on rheumatic heart disease since graduation?

Respondent: no, I told you, iam a teacher, I am a health tutor by training, so being a health tutor by training, I teach, and because I am teaching medicine, I am a teacher of medicine, because iam teaching my students then I would say I am training, I am being trained time and again, all yearly, those we shall have to cover...

Interviewer: you keep yourself updated all the time

Respondent: yes, yes, we keep ourselves updated

Interviewer: ok... and then in the patients you see, how many patients of RHD do you see per day?

Respondent: depending on the location, right now you have found me in family planning, when iam here in family planning, I may end up not attending to any of the patients of RHD, but if I am in the general out patient, yes, chances that I will see, especially in children, chances that I would attend to more than 3,

Interviewer: in a day?

Respondent: suspected, suspected cases, not real ones, suspected cases of rheumatic heart disease are many, because it is almost, I would say it is common

Interviewer: ok alright... and then, the patients you meet, are they only out patients or you also see in patients?

Respondent: out- patient patients

Interviewer: ok so we can go back now, you had actually... told me what causes Rheumatic heart disease...

Respondent: yes, yes, I talked about beta hemolytic streptococcal infection as being the prime cause

Interviewer: ok... what were you told that can be done to prevent rheumatic heart disease?

Respondent: I would think about health education, people should be well educated about rheumatic heart disease, but of course when they have the information they will not move around in the villages, this issue of I have been poisoned, and because I have been poisoned, then they go to those traditional healers and if they come to the health facility and we diagnose the infections in the throat, treat it early, then we will have prevented the production of the antibodies, we shall have prevented the production of antibodies which the body would react to in the later stage, so early diagnosis, early treatment, health education is paramount in the prevention of rheumatic heart disease

Interviewer: then, which treatment options were you taught about for rheumatic heart disease? Respondent ... RHD is supposed to have long acting antibiotics especially the penicillins of course beta hemolytic streptococcus tend to respond better to penicillin. And ...when someone has already developed iris, in the process of developing rheumatic heart disease, one of the things that we need to prevent seriously is the subsequent attack of beta hemolytic streptococcal infection, therefore we give them long acting penicillins majorly things like benzathine which takes little longer in the body and some steroids where possible to neutralize the antigen antibody fights that I was talking about

ok... any other treatment options that you know of? Respondent ... apart from... apart from penicillins?

yes

Respondent: yes, surgical maneuver can come in in case of some pathology in the heart, although it is not performed in this facility, but maybe if referred to other places, yes, in case it has already destroyed the valves and then it would require valve replacement, which is fairly expensive

Interviewer: yeah and may not be available in the facility, or even in the country ok...and then what is your understanding of the long-term prognosis of rheumatic heart disease?

Respondent: the prognosis depends on... the long-term prognosis now will depend on the magnitude of the damage, if the intervention got the patient when there was no serious damage, then there would be good prognosis.

Interviewer: ok Respondent... but if there was destruction caused by the antigen antibody reaction, then the prognosis would be poor, the person would present with full blown ...destroyed say valves of the heart and might even go into heart failure

ok

Respondent: and we may even lose that such a patient as a result

Interviewer: true

Respondent: and we have lost many

Interviewer: ok... do you recall the last patient you saw with rheumatic heart disease?

Respondent: actually, I am even expecting one today

Interviewer: ahhh... maybe you could tell me briefly about the person you were expecting, how they presented to you, maybe the first time...

Respondent: ah...one in their history, actually, they tend to forget about the throat infection, but when you begin asking them about it, they will say yes that has been my problem, I had recurrent throat infections, it was treated, they talked of chopping off the tonsils but it was expensive so, there would be that history of sore throat or recurrent sore throat with associated fevers then when you look through the throat of course with our setting here, of course you see that people have already tampered with the uvula, because people assume that when there is pain, whether there is sores in the throat, the hanging structure seen could be the offending structure, therefore they move in and chop the uvula off and in case, in many cases after chopping off the uvula, they also give antibiotics, since the infection is self- limiting, within 3 days you expect it to clear, within 3 days they will assume that it has cleared because they have chopped off the uvula therefore, the practice around here is that when there is a problem, the uvula should be chopped off, which is actually not the case, so thereafter it will take some time and they will come with features related to heart failure of course, those are now the late complications by the time they are coming out with structures associated with heart failure so when you complain about palpitations, easy fatigability, sometimes swelling of the lower limbs or weakness of the joints, sometimes when you listen to the chest you will have those irregular heart actions and sometimes when you send for investigation, the investigation will reveal that they have issues with the heart, but going backwards looking at the history the patient gave me, then you will know that this one came as a complication of the sore throat that patient had and if that is the case, then it will be more of rheumatic heart disease

Interviewer: ok... quite interesting. So, on average, what is the average age of the patients you see, those who present with rheumatic heart disease?

Respondent: they are not, majorly they are not adults, it’s more common among children and more common among girls than boys that’s my experience

Interviewer: or it’s the girls who have good health seeking behavior...

Respondent: aha...yes, possibly, possibly possibly the girls complain more easily than the boys but more girls are brought to the facility than the boys

Interviewer: so...this...

Respondent: about 7 years

Interviewer: 7years?

Respondent: yes

Interviewer: so, these ones who come, are they in school, do they report being in school or they are out of school, are they school drop outs?

Respondent: many of them are in schools, many of them are in schools

Interviewer: ok...and adults? Any adults who show up with RHD?

Respondent: adults rarely report, when you see an adult coming, then that person is already in late stage

Interviewer: ok...with complications

Respondent: With serious complications but as I said, when you go backwards, you will realize that this person was not well managed at the initial stages of the infection.

Interviewer: ok. So, when you try to talk to them, are they really aware of the link between sore throat, rheumatic fever and RHD?

Respondent: no, they are no aware, they are not aware,

Interviewer: ok...

Respondent: ... actually, they are surprised, especially the adults, they are surprised, when you begin telling them of the sore throat, of course, they will not benefit much from your education, because already by the time they are coming to the facility, they will be having the complications, but they would be surprised and when you talk about if this was handled earlier, well, you will not have gone into this, then they will regret, say if I had known then I would have acted

Interviewer: meaning they have knowledge gap Respondent ... there is an issue of knowledge about it

so, when they present to you, what sorts of symptoms do they describe?

Respondent: of course, palpitations, easy fatigability, difficulty in lying on the left side

Interviewer: ok

Respondent: and...even lying flat sometimes is their problem, most of them will be seated... but of course as I had said most of them would be the late cases reporting to the facility... phone rings...hmmm so...yes

Interviewer: do any of them ever tell you about other symptoms like joint pains?

Respondent: ... joint pains yes...joint pains, joint pains is there especially in adults, especially in adults...ok, joint pain and swelling and partial loss of function is more in adults

Interviewer: ok

Respondent: yes...is more in adults

Interviewer: and not in children?

Respondent: no, it’s fairly rare in children you know when people tend to associate ... When they come with joint pain, severe joint pain is more common among Sickler’s so, you find people moving them more to investigating sickle cell, of course sickle cell is also more common so sometimes sickle cell and rheumatic heart disease is mimic

Interviewer: do you think we are missing out children with rheumatic fever being directed to sickle cell clinic?

Respondent: yes ... that’s what I think. That is another thing I think of course, those children, those ones with sickle cell disease have low immunity, and have higher chances of even developing rheumatic heart disease...

Interviewer: ok

Respondent: and in such situations, sickle cell will be blamed for causing the problem when actually the problem is rheumatic heart disease

Interviewer: have you met anyone with both

Respondent: yes, they are many

Interviewer: many?

Respondent: yes, I wish you could check through the sickle cell children? In the sickle cell clinic, you will discover that oh, our patients are here...ok, many of them are there... phone rings again and requests to answer it ok...

Interviewer: so generally, what’s good about the follow up? Is the follow up really good? And what about the adherence?

Respondent: follow up is not good, why? I said rheumatic fever is more among children, more common among children

Interviewer: ok

Respondent: and people tend to neglect children, if you tell a parent that you would want to see this child after 2 weeks, they will come when the child is badly off, they are never considered in most of the families so, follow up is ... is not very easy of course, the follow up in a hospital in many cases you would want the patient to come to the hospital but not the health workers following the patients to their homes so, may be one day if the strategy of follow up is changed, where people follow these people to their villages...then possibly, they would be attended to, but they would wait until when there is another serious attack has come, then they come to the facility so, they never follow their appointment dates the appointment dates are never followed

Interviewer: ok... is it because they are feeling well...

Respondent: of course, yes, if the child is still playing about, or if someone is still doing well, they tend to forget, they think the whole thing is cleared.

Interviewer: ok. What of adherence, do they follow their prescribed medication? I was like, the treatment would prevent, preventive treatment where you would think of those long acting penicillins...

Respondent: ...yes, if it is too long, then they may not, they may not adhere to

Interviewer: ok. Then what sorts of barriers do they commonly state to you in getting the care they need...challenges they face? Respondent ... In the first-place lack of information because they lack the information, they will not go to the health facility or to a trained health worker to make the correct diagnosis and treatment that is one, then two, sometimes distance assuming somebody is in Aromo, and is not interested in going to aromo health center because people are saying there are no drugs in aromo health center, because our people believe in drugs that when they go to the health center, they must get drugs

ok

Respondent: they don’t believe in this information, the prescription that we make but they would want to get the drugs in the health facility, and if there are no drugs they will go to the private facility because there are drugs there. Unfortunately, many of the private places are not managed by professionals you will find a facility well stocked with drugs but managed by a nursing assistant see that? ... So, the nursing assistant may not be in the capacity of making the correct diagnosis and prescription, the correct prescription

Interviewer: ok

Respondent: so, that could be an issue, distance coupled with lack of information that they have poverty coming in, coz they don’t have money to travel that distance from aromo possibly to lira hospital or if those areas of my village in oyam, otwal, is far away moving from that place to maybe atapara it requires resources so, it’s sometimes difficult for them

Interviewer: ok

Respondent: they wait until there are serious complications and actually, when they are going to the hospital, they go for admission

Interviewer: laughs... So, they wait when they are badly off

Respondent: when they are badly off

Interviewer: what about you, which barriers do you face?

Respondent: in the health facility? In our facility?

Interviewer: yes

Respondent: one I talked about ah... ok let me start with personnel,

Interviewer: yes

Respondent: that we have very few well trained clinicians or experienced clinicians... the outpatient, our outpatient right now I think should be having like 3 clinical officers

Interviewer: ok

Respondent: and if one is possibly sick and maybe another one is on leave, then you would see that there is only one person left at the station meaning that the care that our patient may not be adequate

Interviewer: ok... quality of care...

Respondent: the quality of care will be compromised the time spent, of course for you to get a proper diagnosis, you need to have time for the patient, take adequate history, do all your physical examinations, where possible order relevant investigations, then you conclude

Interviewer: ok

Respondent: but the pressure there, sometimes you would find some few history written and then somebody would move straight to prescription, which is not the order which is not how things should be done

Interviewer: ok

Respondent: but... that is one, two. As I mentioned, I think I mentioned it yesterday, that we have, sometimes we get volunteers but a volunteer, someone who is not paid for the activities they are doing can also have his or her special interests of being within the facility. One he is difficult to supervise two, because of the other interest, that hidden interest, it is difficult, so those are some of the things. And then two, drugs...

Interviewer: ok

Respondent: that in many occasions...

Interviewer: so, should I say lack of motivation for the volunteers?

Respondent: yes, yes, lack of motivation...

Interviewer: or for the health workers?

Respondent: the health workers are getting their salary but the volunteers are there for nothing

Interviewer: they are not paid anything?

Respondent: 100% they are there, they are not getting anything completely,

Interviewer: they are not getting anything? I thought the hospital is supposed to provide something?

Respondent: that is administrative but they are not getting anything so, it makes it a little difficult...

Interviewer: ok

Respondent: to supervise them and to monitor some of their, ok their hidden interest is difficult then I was talking of shortage of drugs, you may wish to prescribe a drug or you can prescribe a drug and the drug is not supplied by the pharmacy, that we have.. Why, because there is a stock out, so that one interferes with adherence

Interviewer: ok

Respondent: and then the quality of care that you are offering to the patient, therefore, meaning that, meaning that your patient will come back with serious complications and investigations, investigations... the results of the investigations tend to take long

Interviewer: ok

Respondent: if you order for an investigation, you are thinking about rheumatic heart disease...and you would want investigations done, so that you maybe refer the patient to the respective places that they can get adequate care, two things, you may receive your patient back or you may not see your patient anymore

Interviewer: do they get lost on the way?

Respondent: they get lost on the way

Interviewer: due to the long waiting hours at the investigation point...?

Respondent: that one I have not discovered yet, that one I have not discovered yet, but sometimes they also get lost on the way

Interviewer: ok

Respondent: then... if you have referred or you have admitted the patient Respondent sometimes we don’t get any information about our patient

Interviewer: so, lack of feedback

Respondent: feedback about your patient

Interviewer: ok what else...?

Respondent: I think basically those are the ones

Interviewer: And then, ok now this is in your perspective, what sorts of barriers do you perceive that the patients face in the care that they need?

Respondent: one major problem that me as a person think of is health education

Interviewer: ok

Respondent: in the community. Health education is a major problem, we are going back, actually most of our patients are going back in the times of Albert Cook where when they fall sick, they do their things in the villages, they are going into those days of, someone has developed, because those days in the past in lango, in the past, if there was someone with a sore throat, they would pour water on an axe, then they would scoop it, the other one pouring on the other side the axe would be handled like this ... (demonstrates) then somebody pours water there and this patient must have to, must take this one which is dropping from the sharp edge of the axe and they say it would clear, it would treat very well

Interviewer: would it really work?

Respondent: so that was the action of the mind over the body...

Interviewer: laughs... hmmm

Respondent: they would just play about with your mind so that you assume you are treated. so, our people are almost going back to those ancient methods of treatment, that’s why you are seeing others coming, ok... am seeing almost 30% of our patients have lost their uvula so, there should be proper health education about sore throat

Interviewer: ok

Respondent: in case there is any sore throat, let us not have any body tampering with the mouth

Interviewer: laughs

Respondent: they should go to the health facility so that they are adequately treated, so that there is proper diagnosis and proper treatment, otherwise we shall continue receiving them at a late hour in the hospital or in the health facility so, to start with, I would think there must be adequate health education offered to the people

Interviewer: ok which other barriers do you think they face?

Respondent: I mentioned ... the distance...

Interviewer: this is in your view, what you think they go through

Respondent: another thing could be our attitude, some of us are not friendly to our clients, some of us are not friendly to our clients, we tend to ignore them and indeed, if someone comes to the hospital and I have not given him the proper attention he expects, sincerely, he will lose interest in getting services from the facility, goes back to the village and have it the other way, the traditional

Interviewer: that’s why I was told mothers prefer traditional birth attendants

Respondent: yes, yes

Interviewer: because they are treated nicely

Respondent: yes, majorly it’s our attitude towards our clients and patients, so maybe health workers must develop that customer care attitude they should recognize that they are our customers, they are the reason why we are here...

Interviewer: yeah

Respondent: and then treat them fairly because they are not the same, others are coming to the health facility for the first time, they have been in the villages so crossing to lira they would have a lot of fear and if they are mishandled then automatically, they would lose interest in getting care from the health facility so, attitude is another big challenge another big barrier

Interviewer: ok. Anything else?

Respondent: basically, I think I would mention that

Interviewer: ok. So, let’s talk about the administration and leadership in the district, what do you think they have done well for you?

Respondent: Am happy to see this tent, the other tent, on our compound, which is managing rheumatic heart disease, iam also very happy to see some of the health facilities referring suspected cases of rheumatic heart diseases, however iam not happy with the reception of these people referred from the health facility because sometimes we don’t give them, you know, those people in the community when they are referring, this is rheumatic heart disease, you must be managed in the hospital, there is a special clinic in that place which should be, which should handle this patient so am referring, then they will refer, so the person will come to the hospital knowing that I have a heart disease and this heart disease of mine will be handled by a specialist and I may even be admitted and treated very well and eventually I will not have this problem. Meaning that if we make the proper diagnosis, those people don’t have investigative facilities so if we have done the investigation in this facility and we have discovered that this patient is not having the RHD that this person was talking about there should be a lot of counselling of this patient, so that the patient gets to understand that yes, those people also did good to refer me to the facility however iam lucky that I don’t have the disease, iam having something else and I wish the unit could also move with this client referred and then look for whoever can attend to this person referred so that the patient gets the adequate care and goes back satisfied. it would be so good but what happens is, if it is not the disease, it is written on a piece paper, this is not a case of rheumatic heart disease, go to out patient

Interviewer: laughs

Respondent: and this one would get lost within the hospital, he or she has come from very far and may not know what else to do, so what will they do...back to the village, unsatisfied so, I would think there should be a mechanism or a linkage between the general service, the general service delivery and then rheumatic heart clinic, first receive everybody, do the screening, if it’s not related to what you are handling, support that person, give the adequate counselling, after giving the adequate counselling, unless there are no counsellors but we have counsellors in this facility, look for a counsellor, counsel this person well, about the rheumatic heart disease and then the condition which this person is having so, by the time the person is going back home, he would really be very happy and may prolong the duration, the time of that person and improve on the health.

Interviewer: ok. So, what do you like about what the district has done, the leadership and the administration? I may talk about lira hospital, I do appreciate the idea of accepting this rheumatic heart disease management on this compound and integrating it with other services that we have I wish to praise them for that I would also wish to congratulate or thank the donors who have offered some resources, to have these services within the facility to support our local people however, there is a lot more, so that we have these people coming for the services, there should be more time spent on sensitization so that we have the places, not even, I would wish that if there was a special place, not the tent, if there could be a designated room or house for the purpose and if they could look for ways of retaining the program because rheumatic heart disease is not about to end. It will still be there for years, meaning that the services will be demanded not for a shorter time but for...

a long period of time

Respondent: yes

Interviewer: ok

Respondent: so, people should be looking at how to retain the services so that it is always there. Then, I wish they could think of continuously training health workers, if they could continuously train health workers have in plan, that the health workers even in the health facility, in the hospital here and other places are trained and then supervised on the management of rheumatic heart disease, it would be so good

Interviewer: ok. That is with the administration?

Respondent: yes

Interviewer: so, they are not doing that?

Respondent: no

Interviewer: those are the things you feel they are not doing? Maybe you can just mention briefly what you the administration is not doing right and the leadership of the district, what you feel hasn’t been done

Respondent: What has been done I think I mentioned it I talked about it

Interviewer: yes, what has been done, now we are looking at what you think should have been done and is not being done.

Respondent: the element of, the element of support of follow up

Interviewer: ok

Respondent: because if these patients are supposed to come back for review...

and they are coming, there must be a mechanism of tracing the defaulter, which is not there, I guess is not in place, so there should be a mechanism of tracing the defaulters...

Interviewer: ok Respondent... so that they are comprehensively treated and they get cured. I think that is what I would talk about

ok. Are you happy about the funding of healthcare in general?

Respondent: no

Interviewer: laughs... what of RHD?

Respondent: I don’t know the funding of... I don’t know, I don’t know, I don’t know what the implementers are experiencing, the implementers of this program, I don’t know what they are experiencing, but may be if I can see from your body then I would think that you people are doing well

Interviewer: laughs...

Respondent: laughs...however generally ...

Interviewer: what of generally funding for health care?

Respondent: generally funding for health care is not adequate if it was adequate, we would be having specialized machines like a CT scan in general in regional referral hospitals we could be having MRIs in general in the hospitals, but now where do we get them? In private places in Kampala very expensive, and they would help in the diagnosis of some of those cases easily see that? So, the funding, look we are talking about motivation we are talking about staffing, if there was proper funding then we would be having enough staff in the health facility, but usually what do they say? The wage bill cannot allow, and if the wage bill cannot allow, what does it mean, there is no money! So there should be, to me there should be enough funding so that the staffing level is raised...

Interviewer: so, meaning the staff level is low?

Respondent: very low... yes, very low

Interviewer: ok. They are low but you have the right qualification

Respondent: yes... we have the right qualification, but as I had mentioned, that now we are getting...ok the right qualification, yes we are getting volunteers who are not motivated, and the facility cannot motivate them why? Because there is no money, and there is no plan for them.

Interviewer: so how is the quality of care offered?

Respondent: ahh... I had mentioned that the quality of care is compromised

Interviewer: because of the few staff?

Respondent: because of the few staff

Interviewer: how would you talk of the waiting time?

Respondent: prolonged

Interviewer: ok. On average, how many hours would a patient have to wait?

Respondent: sometimes even more than 2 hours

Interviewer: more than 2 hours? Ok. So as a health worker, what motivates you?

Respondent: first of all, being a health worker is my motivation, I’m not a health worker by chance I’m a health worker by choice...

Interviewer: ok

Respondent: and I love to be what I am. And if I have treated you, when you are badly off and tomorrow, I see you cured, I get motivated

Interviewer: other than that, what makes you carry on?

Respondent: ahh...the finances we talk about is just a source or a means to motivation, because I would want to come to the hospital, I’m a health worker I live, my home is about 5km away I would want to a place where I do offer my services and I feel happy about it, but coming from my home to the health facility requires resources, requires money therefore, the money should be given to me by the facility, but what do we receive? What we receive is not sufficient, although you have been hearing that there is some increment. But the increment of salaries that usually occur also has challenges, because by the time salaries were increased, even the prices of everything shot up so, everything is balanced again, you see that? Everything is balanced again if fuel was at 2500, by the time they are increasing the salary, it has now gone to 4000 actually 4300 now if I was using a fuel from my home to this place, I would put in fuel of like 10000 and 10000 or 15000 would take me for like 3 days but now I’m using 30 see that? So, it has balanced everything

Interviewer: so, there is actually no increment...

Respondent: there is no increment, there is no increment that is how iam looking at it there is no increment. Meat by then, meat was 8000, by the time salaries increased, now it is 10 and 12

Interviewer: laughs,

Respondent: its 10 and 12

Interviewer: laughs... did they decide to increase their prices because your salaries were raised?

Respondent: laughs... so, if the salary is increased by about 100% and then they have raised the cost of meat by 30%, the cost of fuel by... like...

Interviewer: almost 50%?

Respondent: by about 50%, look at that, you almost see like there is no increment. Pay as you earn has also taken most of the money they say ok, we shall give you 3 million, we shall give you 2.2, 3 million you end up getting 2.2m, 800 pay as you earn, ahh... yes, that’s what it is, you end up getting 2.2. 2.2 If you are an old man like some of us, who have now children at the university, what do you remain with?

Interviewer: almost nothing

Respondent: actually negatives

Interviewer: laughs

Respondent: laughs. you go into borrowing, and those bor...actually the element of borrowing is a big problem in health services, I mean in the civil services because almost everyone in government service has a heavy loan to pay, and the loan is taking already more than ok about half of the salary of almost everyone is taking almost half of that salary, and if a half is taken by bank, half of what that person is getting is taken by bank, the other half remaining cannot do the basics, therefore you find people running up and down to do other things so that the family can also survive. And when they are doing this they are doing this at the expense of service delivery, and there is no way you will say no, please don’t do this of course maybe part of the money that the person took a loan for was paying school fees because whatever he has or whatever he is getting from the facility cannot satisfy the needs

Interviewer: yeah

Respondent: so, he would go in for the loan and then there after is running up and down to fill in for some of the gaps. So, it makes supervision very difficult

Interviewer: true

Respondent: that’s when, that’s when the element of volunteers taking over office, you see a volunteer, the real person supposed to do the work requests the volunteer , please am still moving out, handle my patients, then the volunteer will do the reverse of what is expected. You see that?

Interviewer: yeah

Respondent: but if what was given to the civil servant was fairly good, they could cover the basics of the civil servant, then people would have more time at their places of work and then offer their services.

Interviewer: true

Respondent: you are lucky you are not in civil service...laughs

Interviewer: laughs... but I will soon join

Respondent: please come... there is advert

Interviewer: ok

Respondent: they posted yesterday

Interviewer: ok. What about medication, do you think we have enough medication like benzathine, heart failure drugs and diagnostics in the hospital?

Respondent: many times, they are out of stock, many times they are out of stock

Interviewer: ok

Respondent: they will say very little was brought

Interviewer: so most of the time they are out of stock?

Respondent: most times they are out of stock

Interviewer: ok. Then why is it so, why is it always out of stock? Is it because the budget is small?

Respondent: I think the pharmacist would answer some of those,

Interviewer: ok

Respondent: I may not be in position, but sometimes when you ask them, others will say, you know, we order for the drugs but what is brought is not our order, we had ordered for this, look at the order book, we ordered for this but what is brought was this, so we go by what has been brought

Interviewer: ok

Respondent: I think they know the reason why some of those happen the way it is happening

Interviewer: what of the records system, do you think it is doing well?

Respondent: hmm... records, yes, record have greatly improved, they have greatly improved, both out patient records and in-patient records

Interviewer: ok

Respondent: HMIS has greatly improved

Interviewer: ok so, what have they done well?

Respondent: in the first place, record officers are many, they are many, and because they are so many, their quality of service is improved

Interviewer: ok

Respondent: they do their work with little stress, and because they do their work with little stress, they offer quality services

Interviewer: ok. That’s nice. Then what do you think they haven’t done well?

Respondent: what they haven’t done well, the records officers? The record people?

Interviewer: yes

Respondent: maybe weekend coverage is an issue, weekend coverage is a big issue

because sometimes you would find the stores, I mean the records non-functional over the weekends, if they could only improve on that it would be so fine,

Interviewer: ok

Respondent: and many times, shortages of forms can also deter their activities, ok it is not their making it could be institutional

Interviewer: ok. If I went to their offices, would I get like registers for acute rheumatic fever or RHD patients?

Respondent: that is not their problem that is not their problem that is the same thing iam complaining about sexual gender-based violence ah... some diseases are grouped under others. I have not checked the register yet, but there are many diseases that are grouped under others and then you know others are never specific so, you may want to see a specific disease and they say ...ah... that one is under others, and the others will be so many I was giving an example of sexual gender-based violence, they would just call it domestic violence but we have rape, we have defilement, physical injuries, so we would want those categories spelt out. So, the same way, maybe, I said I haven’t checked the register yet,

Interviewer: ok

Respondent: maybe you will find rheumatic heart disease also put under others

Interviewer: under others... so actually you won’t be able to quantify the total number of patients seen here with rheumatic heart disease

Respondent: yes

Interviewer: ok. What about guidelines and protocols on rheumatic heart disease, do they exist in the hospital?

Respondent: I haven’t seen any

Interviewer: you haven’t seen any? Wow. We have had so much about local systems and health systems and all that. But now let’s look at perception of patient outcomes. Generally, do you think that these RHD patients are getting the care that they need? Especially surgery?

Respondent: no

Interviewer: why do you think so?

Respondent: of course, when there is surgery you would think of referral to Mulago, heart institute and referral to Mulago heart institute has so many things attached, one, you would need maybe transport...

Interviewer: ok

Respondent: and transport from the hospital may require fuel which may not be available then 2, the upkeep on the other side will also require money, so in many cases if a patient is having a serious heart disease, RHD, and you think the patient may benefit from services outside a place like lira hospital they go back home, they condemn the patient, the patient is supposed to go to Mulago, we don’t have the resources, what do we do? Back home

Interviewer: that is really sad. Are you aware of any patient safety and quality of care concerns?

Respondent: pardon

Interviewer: patient safety and quality of care concerns?

Respondent: yes, yes, I’m aware

Interviewer: ... like which ones?

Respondent: we have patients’ rights and ...which we are supposed to observe... we also have health worker responsibilities to match those rights and we are supposed to as health workers we are mandated to handle those issues of rights of our patients

Interviewer: ok

Respondent: one they have right to information, we must give them correct information, they have right to correct treatment and we are supposed to offer the proper treatment that they are supposed to, that they demand and it is our responsibility ...

Interviewer: ok

Respondent: ...when we are in this health facility to fulfill all those and others, there are a number of things entailing the rights of patients

Interviewer: ok

Respondent: which is documented in the patient charter, I think we have it in this hospital, patient charters are there

Interviewer: ok, so, do you think we are following them?

Respondent: I ... yes, some areas, yes, some areas has challenges

Interviewer: ok

Respondent: and the challenges, others are man-made, others institutional, others national issues see that?

Interviewer: ok. Do you think we have preventable deaths occurring in the hospital?

Respondent: yes

Interviewer: like which ones?

Respondent: maternal death

Interviewer: aha what do you think would be causing such?

Respondent: late reporting

Interviewer: by the staff?

Respondent: late reporting by the patient

Interviewer: oh...by the patient themselves

Respondent: the patient reporting late

Interviewer: ok

Respondent: or lack of what to use

Interviewer: in the hospital?

Respondent: in the hospital

Interviewer: ok. So, it’s sometimes the hospitals...

Respondent: supposing a patient has come, a mother had come with severe anemia and there is no blood in the facility, don’t you think such a death would be prevented if there was blood?

Interviewer: yeah

Respondent: now we don’t have a gynecologist in this hospital,

supposing a mother comes to the hospital today with a serious complication, that requires the attention of the gynecologist, and the medical officer will say no I am unable to handle this, I needed the boss and the boss is not there, what would you expect? Death of this mother

Interviewer: yeah

Respondent: death of that mother. So that would have been a preventable death but because such a cadre that was supposed to manage that mother is not there, then the mother may die

Interviewer: ok

Respondent: because the mother wanted blood and there was no blood, the mother will die, we even had issues where we would lose children because there was no oxygen, but iam happy the hospital has now installed the oxygen plant with in the institution, but we had lost so many in the facility because there was no oxygen

Interviewer: that’s sad

Respondent: yes... and yet those could have been preventable death

Interviewer: do you think we have patients dying in the community without presenting to the hospital

Respondent: yes

Interviewer: why?

Respondent: accessibility

Interviewer: to the hospital?

Respondent: to the hospital, you cannot access the hospital easily, by the way there is no...sometimes in 1998, 1999, 2000 and so on, there used to be, there used to be a radio call that were planted on the ambulances and the health institutions and they would coordinate say we have a serious patient, we have a very severely sick person we are bringing into the facility please prepare, by the time these people were reaching, the hospital you would find the hospital set or there was communication from the villages they were calling them what? I have forgotten, there were people in the villages that would hurry the patient to the health facility or call the facility and the facility would pick the patient from the village to the health facility and if they were unable to manage, then they would coordinate with the referral center and rush the patient, but those things disappeared again. So, the linkage the coordination between the village, the smaller health facilities and referral centers is lost again

is lost

Interviewer: ok

Respondent: so accessibility of services is not easy

Interviewer: ok

Respondent: and then the bureaucracy, you must first do this, first do this

Interviewer: like you must have a referral letter before coming here

Respondent: yes, there must be a referral letter. Then we are lucky we now have the casualty, emergency otherwise in the past, people would come and get lost within the hospital, come to the hospital with a man who is having obstructed, I mean intestinal obstruction, and the man will be taken to maternity, and maternity will say we don’t admit men

Interviewer: laughs...ok

Respondent: go to the male ward, and then the man will be taken to medicine ward, he has intestinal obstruction, taken first to maternity, maternity would refer to medicine, medicine would say this is not our patient, maybe the person would even sleep there then the following day he is taken to his ward. Surgery

Interviewer: surgery

Respondent: and you think by the time they are taking him to surgery he is yet a human being?

Interviewer: no

Respondent: the whole gut is not there, so I’m happy that we now have casualty where everyone is would first be taken there and assessed, resuscitated then eventually forwarded to the rightful places

Interviewer: ok so, in your opinion, what are the 2 most important things ministry of health should do to improve outcomes?

Respondent: the things which should be done are..., we had talked about funding,

Interviewer: ok

Respondent: there must be increase in funding of health, in health

Interviewer: ok

Respondent: two, there should be improvement in recruitment of staff

Interviewer: ok

Respondent: three, they should think about infrastructure, remember a place like this hospital was built way back in 1928, when the population of this place was less than 1 million. I guess, because the population of the entire country was less than 5 million

Interviewer: yeah

Respondent: so, the population here could be less than a million, but we still have the structure for that population

Interviewer: laughs

Respondent: and then, you know, the staffing depends on the structures, the staffing of an institution like this one is looking at the existing structures

Interviewer: ok

Respondent: meaning that even if we are saying now, we have enough staffing for lira regional referral hospital that is not the required staffing to provide services to the population, the increased population

Interviewer: true

Respondent: so, there must be something done to relate the population and then the required health professionals, like if this is the population of lango sub region, about how many health workers , about how many cadres of these health workers do we need to take care of this population, there should be something done related to that, but not looking at structures of the facility per se otherwise we shall still have the shortages of staff we are talking about the burn out of the few staff within the facility because of the exploding numbers of patients and even the drugs, coz the drugs coz the drugs also they also look at the structures, if one day, people estimate the number of people who get services from the private facilities then join in the health facilities, in the government facilities, maybe take a half of those going to the health facilities, then we shall have more people seeking care from well-trained motivated health workers rather than moving here and there to delay care then eventually when they have failed from the other side, they would have done many things one, they will have taken away the resources, say the resources those people have two, the will have delayed care, then finally they are referred to the health facility when they are dying so they will have lost everything, see that?

Interviewer: yeah

Respondent: or another thing, if RHD management that we have in the facility could also organize trainings for some of those people in the private facilities as well, so that we don’t delay them, they do something for the patients, since others prefer going to them. It would be so good

Interviewer: ok. Anything else?

Respondent: apart from thanking you?

Interviewer: laughs

Respondent: and your patience?

Interviewer: ok

Respondent: I have loved your patience, thank you for checking on me

Interviewer: and thank you very much also for accepting to be a part of this

Respondent: you are welcome

Interviewer: sparing for your time

Respondent: its ok

Interviewer: yeah

Respondent: thank you so much

Interviewer: you are welcome.