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

Interviewer: Okay, for record purposes, today is the 9th November, 2019, we are sitting here at Mbarara Municipal Council Health Centre IV and we are talking to participant WH007. So thank you sir for allowing to speak to us today. Just to remind you, we are looking for how we can provide better care for our RHD patients, and there are no right or wrong answers; we are just interested in your opinion. So we request you to be frank, share your opinion, your data is going to be confidential and we are not linking your identity to any information that we put in our reports. Can we go ahead?

Respondent: Yeah.

Interviewer: Thank you. So please sir, can you tell me a little bit about yourself; how old are you?

Respondent: A bit about myself or just my age?

Interviewer: Just the age.

Respondent: I am 28 years old.

Interviewer: And then what are your qualifications?

Respondent: I have Bachelors in medicine and Bachelors in surgery attained from Mbarara University.

Interviewer: Okay. You trained from Mbarara. How long ago did you finish?

Respondent: I finished in 2016 and then I did my internship and finished in October 2017.

Interviewer: 2017. How long have you been working? You said you working at?

Respondent: Buziwera Health Center IV.

Interviewer: How long have you been there?

Respondent: Buziwera or?

Interviewer: Buziwera.

Respondent: I have been working in government health Centre in Mbarara for 1 and half years now. Previously I was in Bugambo and now about 6 months in Buziwera.

Interviewer: Okay. And then um, when you look at the patients you have seen in your practice, the demographics; first and foremost, what are the age groups you have been seeing and what are the illnesses as per age group that you notice over those years?

Respondent: For just pediatrics or in general?

Interviewer: Let’s start with the pediatrics and then we look at the others.

Respondent: For pediatric patients I have been seeing, they range from about 1 month old to roughly 4 years old. Most of them are really around, below 1 year and most illnesses are pneumonia. Um, mostly pneumonia, upper respiratory infections, cough or cold and malaria. For those above 1 year to 5 years, there’s malaria and upper respiratory tract infections.

Interviewer: Then among the adults?

Respondent: The older?

Interviewer: The adults!

Respondent: It is usually upper respiratory tract infections, peptic ulcer disease, malaria, sexually transmitted diseases, um, yeah, and UTIs. Yeah.

Interviewer: Okay, thank you very much. And they um, tell me a little bit about your training on RHD. Have you been trained? Have you had any specific training in school about rheumatic heart disease?

Respondent: Yeah, we even had a lecture about it in medical school. From there, the other training was during this study for RHD campaign/ study.

Interviewer: They gave you some training?

Respondent: Yeah.

Interviewer: For how long was it?

Respondent: It was a one day workshop.

Interviewer: It was a one day workshop! Okay, and then um, where was this training?

Respondent: It was at Mbarara Target Mall.

Interviewer: Okay, thank you. And um, during your working experience, have you encountered some RHD patients? Do you see some patients as you do your work at the health Centre?

Respondent: Um, they reconfirmed cases, I saw most of them in medical school at Mbarara Regional Referral Hospital, full blown RHD patients. Then I think I saw one case of Rheumatic Fever. During my practice we have had many suspected Rheumatic Fever but I have not seen cases of confirmed rheumatic heart disease.

Interviewer: At your health Centre?

Respondent: At the health Centre, yes.

Interviewer: Okay and then um, for the suspected cases what do you do for them? For rheumatic fever because you have said you have seen some. Do you handle them at the facility or?

Respondent: Um, I usually give them, we give them STAT medicine for the joint pains, analgesics then we refer them.

Interviewer: Then you refer them!

Respondent: Yeah.

Interviewer: Okay. Where do you refer them usually?

Respondent: Usually, we refer to the main hospital.

Interviewer: Okay, and then um, so you saw only one confirmed RHD patient at your health facility where you were?

Respondent: At the facility, of course we don’t have anything to confirm; we have seen many heart disease patients but we can’t tell if it’s RHD.

Interviewer: Okay, and then, um I am interested in what you have been taught, what is your understanding on the causes of RHD?

Respondent: Um, from my understanding RHD, it is an immune mediated disease where some antigen from Group A streptococcal group, is it group b? Group B strep, um, have antigens which are similar to some of the markers on human tissues like the heart or kidneys. So the immunity attacks those antigens thinking they are those organisms, they end up attacking the tissues including the heart in this case, which leads to destruction of the valves in this case the mitral valves, then the aortic resulting into the disease.

Interviewer: Okay, thank you. So are you aware of the link between sore throat and RHD.

Respondent: Yes, sure.

Interviewer: Okay, and then what were you told can be done to prevent RHD?

Respondent: RHD we were told once that usually in young children between 5 to 15 years, when they come with sore throat, you can treat them with Benzathine penicillin or other Penicillins and antibiotics.

Interviewer: And what were you told are the treatment options we have for RHD?

Respondent: The best and most convenient was Benzathine where you give one injection and the patients goes or you give, I don’t remember, but I think Amoxicillin at a higher dose and it has to be taken for around 10 days. I don’t remember that very well.

Interviewer: Okay, any other option apart from those two?

Respondent: The other option was um, the other option ...

Interviewer: Apart from the Penicillins.

Respondent: um, I don’t recall.

Interviewer: There’s none, that’s all you know?

Respondent: That’s all I know.

Interviewer: And then, what is your understanding of the long term prognosis of RHD?

Respondent: The long term prognosis?

Interviewer: Yes.

Respondent: It depends on how early diagnosis has been made. If it has been made early, the progression can be altered so that the heart valves are not kept being hit by the immune system. Um, if it is already um, if the valves are already been damaged, they can have heart surgery so that the valves are replaced and the survival rate can improve.

Interviewer: Okay. The first time you encountered an RHD patient was when? I mean the very last time. It was confirmed.

Respondent: Confirmed, around 2015.

Interviewer: 2015! So do you recall? Briefly tell us how you remember that patient, what did the patient present with, how old was the patient? Briefly.

Respondent: It was around ten year old female on pediatric ward at the regional referral during my, I think 5th year. The patient had difficulty in breathing, had cough, on examination it was the first case where I heard a good heart murmur of the child and I appreciated the murmuring of the heart. It was systolic murmur. Um, well, I don’t remember the investigation but at least the pediatrician told us it was a confirmed case of Rheumatic Heart Disease.

Interviewer: And then um, you said 10 year old; was he in school or out of school?

Respondent: I don’t know but I think she was in school.

Interviewer: Generally, do you think our patients know the difference between sore throat, ARF, and RHD?

Respondent: Our patients!

Interviewer: Yes.

Respondent: I would say no,

Interviewer: No!

Respondent: They don’t know and there’s need for in-depth sensitization.

Interviewer: Okay, and then um, so you have mentioned the symptoms that they describe to you. You said cough, joint pain and what?

Respondent: And joint pains.

Interviewer: Anything else they usually come presenting with?

Respondent: Um, they have a fever, joint pains and many joints. Um, well for the patients I have seen they really don’t have those real symptoms.

Interviewer: Okay. And then um, are they good at follow up and adherence, in your opinion?

Respondent: The patients?

Interviewer: Yeah.

Respondent: We when well explained to and um, when we send them to the referral, they are explained to and they are told the disease themselves there they um, follow the medications.

Interviewer: But are they explained to when they are referred? Do you see that happening? Are they given enough information?

Respondent: Well Rheumatic Heart Disease being, it is one disease where you have to be ... I mean Rheumatic Fever; because of its resemblance with other diseases, the upper respiratory infections, early malaria, it is highly missed or misdiagnosed. So even the part of health workers, they may not be in position to explain well before they themselves are able to suspect it.

Interviewer: Okay. How can we at least make them competent to really see that this one is Rheumatic Heart Disease?

Respondent: One is of course ...

Interviewer: What needs to be done?

Respondent: What needs to be done is to have workshops with them, CMEs and tell them to increase the highly suspects; it could be one of those um, cases where patients present with fever, joint pains, sore throat and the age group, I mean that group where they should highly suspect it.

Interviewer: Okay and then um, why do you think most patients are given appointments and they don’t turn up?

Respondent: Um

Interviewer: Someone has to come for an injection on a monthly basis but they come back when they are in heart failure?

Respondent: I think that goes back to, most of the patients in the whole setting are poor. So and secondly, there’s poor health seeking behavior. And thirdly they tend to think that the nearest place where they get treatment is enough for them. So at first they may feel that it is unnecessary to seek for maybe highly specialized care, it is not necessary for them. They feel that where they are getting treatment is enough for them, but the other point is the poverty; they can’t afford the transport to and from.

Interviewer: Okay, so those are two, some of them feel they are comfortable where they get the treatment from.

Respondent: Even from a drug shop nearby.

Interviewer: Others they don’t have transport to bring them to the hospitals. Any other barrier you think?

Respondent: Still, they don’t connect. In this case of rheumatic heart disease, it is something that starts small but ends in a fatal condition. They don’t appreciated that casket.

Interviewer: Okay. And then let’s look at the local health system barriers.

Respondent: Yes.

Interviewer: We are going to see which pieces are working for you, we are going to be mentioning different aspects and you’ll give us reasons why you think it is working and why it is not working.

Respondent: Yes.

Interviewer: Okay, let’s first start with administration at your facility.

Respondent: yeah.

Interviewer: Is it working for you? Does it help you do your work well as you are caring for our patients?

Respondent: The administration um, administration-wise, in this case being the administrator.

Interviewer: Yes.

Respondent: We um, we have been supporting our staff; we made sure we put in and provide the necessities within our capacities especially financially. We put on refresher CMEs to keep the health workers competent.

Interviewer: Have you had any CMEs targeting Rheumatic Heart Disease? Have you had any?

Respondent: Yes, it was delivered by this team.

Interviewer: Oh, when they came to your place!

Respondent: Yes.

Interviewer: Okay, and then um, what else are you doing for your teams so that you make their work easy as an administrator?

Respondent: We keep them highly motivated.

Interviewer: Um, in what way? How do you keep them motivated?

Respondent: There are small allowances for extra activities usually outside the facility. Inside the facility, we make sure we usually extend small amenities like water and electricity to their residential places.

Interviewer: Okay, now let’s look at the leadership in the district, is it helping you anywhere? Is it helping you do your work in your facility?

Respondent: Yeah the leadership is definitely helping. They help recruit more staff members and it has helped renovate some buildings and building some facilities. I think it is working.

Interviewer: Do you get any supervision from them?

Respondent: There’s a constant or regular supervision from the District Health Officer and even the other officials from the district.

Interviewer: So you feel that this this working for you and you don’t have issues!

Respondent: Yeah.

Interviewer: Let’s go to the funding for health care in general.

Respondent: For health care in general!

Interviewer: Yeah, is that working for you?

Respondent: Funding Is 2 ways; the consumables at the facility’s, running, maintenance of the facility, and then the drugs. Funding has never been enough or near enough but at least it’s there to keep basic things like water and electricity. The drugs last for some while then stock outs. So there’s still much more needed.

Interviewer: So usually for RHD patients who cannot come on monthly basis for Benzathine they are referred to health facilities near their places.

Respondent: Yes.

Interviewer: So if um, an RHD patient came to your facility would they at least find the medication there?

Respondent: In this case Benzathine!

Interviewer: Yes.

Respondent: It would be there. It is there.

Interviewer: It is there! Have you had stock outs?

Respondent: Currently for Benzathine? No

Interviewer: Do you receive any RHD patients who come to your facility?

Respondent: um, I wouldn’t be in position. Maybe they come when I am not aware.

Interviewer: You don’t get to know about it!

Respondent: I haven’t been told one.

Interviewer: Okay, um, so from what you have said it looks like there’s no any funding specific for RHD at your facility!

Respondent: Umm, not currently.

Interviewer: Okay. So now let’s look at the health worker staffing and qualifications; how are they at your facility?

Respondent: Currently at the level of Health Center IV, our staffing I can say is good.

Interviewer: It is good! You have enough staff to handle the ...

Respondent: Per cadre we have enough staff

Interviewer: Well qualified for their work?

Respondent: Yeah, we have 2 medical officers um, 3 three clinical officers and other clinical officers in the specialties, about 11 nurses, 10 midwives. At a level of a Health Centre IV, the staffing is okay and they are competent at that level.

Interviewer: How about the waiting time for our patients, if you look at it what do you have to say about it?

Respondent: The waiting time is still um, we serve a large population the facility being in a bit of a town. We serve more patients than from our attachment areas. So still waiting time is still a problem. They are many.

Interviewer: Okay, how about the quality of care that is given to the patients in the facility?

Respondent: [laughs] there’s always a room for improvement, I can say that. But currently, we give the best.

Interviewer: Okay. What is lacking? What would you have done better to make it perfect?

Respondent: Um, in terms of quality of care?

Interviewer: Yes, for the patients.

Respondent: Okay, if I wanted to improve I would strengthen quality improvement committees to ensure maybe monthly meetings to ensure quality projects to improve areas that are having quality issues with a focal person for that quality improvement. I would ensure regular CMEs that are funded with needed materials, um, then also have staff workshops or tours to centers of excellence in the region to see how better they can improve themselves.

Interviewer: Okay. So you talked about getting training from these guys, who else was trained apart from you?

Respondent: Um, and the rest of health facility workers were trained from the facility.

Interviewer: They were trained! Okay, are you comfortable saying that probably now they can identify a case, if it came to the facility after the RHD training?

Respondent: Yeah, most of them but there is need for a refresher.

Interviewer: Okay, and then um, let’s look at the medication; you said Benzathine, you have it in stock!

Respondent: Yeah.

Interviewer: Do you have any heart failure drugs that you have in stock at your facility?

Respondent: Um, heart failure! I think at the level of a Health Centre IV, some of the drugs we have may be for heart failure but they are meant for other conditions like hypertensions. So we are not supposed to be seeing heart patients.

Interviewer: Okay, you are not supposed to handle them. And um, so even the diagnostics don’t have!

Respondent: We don’t have.

Interviewer: Okay, let’s go to the health information and your medical records system, what do you have to say about it? Is it working for you?

Respondent: The medical records system!

Interviewer: Yes.

Respondent: The medical records system is a bit of a challenge. It is hard using hard paper because sometimes we run out of stock of stationery and space to keep the records. So we would wish to go electronic if we could manage.

Interviewer: So could you say when you at your staff, if you went digital would it be easy to take on the medical record?

Respondent: Yeah, most of the staff are computer literate, so they just need a refresher for specific programs.

Interviewer: Okay. Do you have any registers for ... you said don’t handle those patients because ... ? Because I was going to ask you if you have any specific registers for have ARF and RHD but you don’t handle that. That’s what you said.

Respondent: Yes.

Interviewer: And that means you don’t even have any guidelines and protocols for RHD?

Respondent: Yes.

Interviewer: But do you have a clear way of referring such cases in case they came to your Health Centre?

Respondent: Usually we have referral forms.

Interviewer: You have!

Respondent: We usually have but sometimes when they run out of stock, we just write in their books and, because there’s only one referral, we send the patients there. It’s the only step next.

Interviewer: So um, from the list that we have gone through, we are just going to see what’s working for you and what’s not working for you. Administration, that one you said that is okay.

Respondent: Yes.

Interviewer: Funding for health care; you said it’s never been enough.

Respondent: Yeah.

Interviewer: It is lacking. Health worker force, you said you are okay with it. Medication of courses specific on RHD management, you said you don’t handle.

Respondent: Yeah.

Interviewer: So you don’t get those drugs.

Respondent: We don’t.

Interviewer: But you have BPG.

Respondent: Benzathine! Yes we have.

Interviewer: Okay.

Respondent: Though we don’t know if you sent us many patients we’d still be having enough.

Interviewer: Oh, you do not know if you would have enough.

Respondent: It is shared by other patients like those with STIs, syphilis.

Interviewer: Then for the health information, you’d advocate for digital!

Respondent: Yeah, digital system right from the patients up to the Centre for the collection of data.

Interviewer: And the guidelines and protocols? Do you think if you would need them at your facility for RHD care?

Respondent: Acute Fever, yeah the guidelines are okay for the acute rheumatic fever but then for the heart ...

Interviewer: RHD

Respondent: [laughs] for RHD? Really no.

Interviewer: You don’t! Okay, so for the last part of the interview, let’s look at your perceptions of patient outcomes. Do you think the patients are getting the care they need?

Respondent: Um, being that most of the diseases like it has been always been said, we are still at a level where we are mostly hit by infections and other diseases that can easily be prevented. And, health Centre IV like any other health center centers on prevention; they deal much in prevention. And in our work plan, we focus much on prevention of diseases, so I believe we are giving above um, moderate.

Interviewer: Moderate!

Respondent: Yes.

Interviewer: Okay. So at least for sore throat am sure if they brought a kid with sore throat, you can handle.

Respondent: Yeah.

Interviewer: So um, do you think these parents, the parents to those kids are given enough information about the dangers and the more serious implications of having this sore throat recurring? Do you think they get that kind information at the facility when they come?

Respondent: Um,

Interviewer: So as prevent the bad cases of RHD?

Respondent: Many health workers are now informed about it and the need to suspect it about the ARF and RHD. But then like we said earlier, the lines, the waiting time, the patient numbers, we don’t have a good time for a health worker-clients to explain more. So I would advocate, maybe I would even implement it if possible that we give health talks to our patients at the facility and once in a while in the communities. Then it would be easier to reach out to many people at once.

Interviewer: Okay, that’s wonderful. Surgeries; you already said that you refer the cases so that wouldn’t apply to you. Do you have any patient safety and concerns at your facility?

Respondent: Patient safety.

Interviewer: Yeah, you know there are practices where you see that surely you are putting the patient’s life at risk or where you could have done better.

Respondent: Yeah, like any other place, we always have that place where you see we could have improved where you can see there was as a mistake on the part of the health worker. These always happen.

Interviewer: Like whisk scenario can you give? Like what incident?

Respondent: Sometimes antibiotics are given to the wrong conditions and some diseases are diagnosed when maybe an investigation could have been necessary to confirm.

Interviewer: Okay. Are you seeing any preventable deaths in your facility?

Respondent: preventable deaths!

Interviewer: Yeah, someone goes but deep inside you know honestly this wouldn’t have happened.

Respondent: Yeah sometimes I have seen deaths where maybe we delayed to do something, to put an intervention partly because of stock outs or partly because the health worker did not highly suspect the condition.

Interviewer: What could be the stock out? In what area?

Respondent: Stock outs, for example, we have had stock outs on what you have talked about, and for example we have had stock outs in TB diagnostics. So you have a suspect but you don’t have a test immediately.

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

Yeah, sure a lot of them. Some relate it to witchcraft; they're are home praying, visiting traditional healers, while others don't have money to take them to facilities. Others simply, I don't know how to call it but there's that negligence even to the extent of being negligent to yourself not to seek care.

Okay. Any other, anything else that is keeping them from coming apart from the ones you have mentioned?

Respondent: Um, maybe some feel that the facilities may not help, that they may not be in position to help.

Interviewer: Why would they feel that? Why do you think they have that kind of ...?

Respondent: Because there has been a period where probably health facilities were not functioning well to the extent that some people even lose lives in the health facilities. So some don't believe that there has been an improvement.

Interviewer: Um, as we finish, I have two more questions. One; what are the two most important things you think MOH, Ministry of Health should do to improve patient outcomes?

Respondent: One is to increase staffing of health workers.

Interviewer: Which cadre mainly?

Respondent: Cadres! For example, at the level of Health center IV, staffing fully with 2 medical officers and senior nursing officers. Then the other one is to improve, to provide a bigger budget for drugs and also improve on the supervision of those drugs.

Interviewer: Okay, one last question, is there an impact ... If there is probably um, let's look at the RHD patients, If he tells the community “you know what? I went to the facility and they told me I have this disease,” are they helped in the community?

Respondent: If? Come again!

Interviewer: If a patient or someone who has RHD goes to the community and tells them, “you know what, I have been diagnosed with RHD.” Does the community help our patients in any way? Do you think they are helped?

Respondent: The community, I don't know but maybe depending on the social status of that community and such a condition having less stigma for example related to HIV, they are usually helped; funded to meet the costs and even more psychological support. If the community is able to ... especially in terms of finance if the community is able to and if it's not, still they will give more psychological support.

Interviewer: Is there stigma associated with it RHD?

Respondent: No.

Interviewer: It's not!

Respondent: It's not.

Interviewer: Okay. Anything else you want to add before we finish?

Respondent: Um, maybe um, I have been following this study from my colleague. Much as I knew RHD commonly in children, I did not think it is to that extent as revealed by the research. So I would feel that it starts as a condition from a level of health centers and not at higher institutions. So you should put more focus, the ministry should put more focus to make sure the health workers and the health system at that level is able to pick those patients to prevent the full grown condition of RHD which is more expensive to manage. This can be in a way that more training is funded in the area and drugs for prevention such as Benzathine are more stocked in more facilities at the level of health center IIs, IIIs, IVs and also improve on the staffing the cadres especially clinical officers and medical officers who may be able to diagnose these conditions. Then they can put guidelines for quickly picking up of this condition like they have done for TB and other conditions.

Interviewer: Okay. Thank you so much for that information. We shall use that information and the information we have gotten from other participants and come up with strategies of improving our care for the RHD patients.