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

Interviewer: So we are at Kajjansi Health Centre IV and we are in the clinician’s room, and um, we are having a discussion about rheumatic heart disease; building a case to rheumatic heart disease and control in a resource limited setting. So tell me about your age; how old are you?

Respondent: I am forty three years of age.

Interviewer: Forty three years of age. Tell me about your qualifications and training, whether you did nursing or medical school.

Respondent: I hold two diplomas; one in clinical medicine and community health and another one in palliative care.

Interviewer: Where did you finish the first one and when did you complete the second one?

Respondent: I got the first diploma in 2000, and the second one in I think 2015; that’s what I remember.

Interviewer: Okay. How long have you been qualified?

Respondent: it’s nearly sixteen years now in practice.

Interviewer: 16 years!

Respondent: yes, in practice.

Interviewer: Okay. How long have you been working here at Kajjansi health center IV?

Respondent: it’s been one year and three months.

Interviewer: Where were you working previously?

Respondent: Basically, I was doing administration and at the same time practicing medicine and community health. In was the In-charge of at Bweyogerere Health Centers.

Interviewer: So you have been working here for one and a half months as a senior clinical officer!

Respondent: yes

Interviewer: So tell me about the demographics of your patients; the patients you see here.

Respondent: In children, of course we have They are children with diarrheal diseases, pneumonia, malaria, worm infestations, skin conditions, HIV is also rampant, um, we have also gynecological diseases like STDs and STIs; they are very common in this place. We of course have HIV in adults, diabetics and Hyperstensives. We also see neonatal conditions like this one..., bacterial conjunctivitis, cord sepsis.

Interviewer: What are the major age groups of patients you usually see? Like 10-18 ...

Respondent: Yeah, diarrheal diseases are common in 0 to 5’s and have been more specific in 1 to 5 year olds. That’s the same age we get ... malaria is also common but that’s in a specific places like Nakigaraganga; that’s where we get most malaria cases. I did a study around Nakigaranga and we get a lot of malaria both in children and adults, but mostly in children. I did a small study about malaria around this area and it was specifically Kajjansi village and a place called Nakigaranga.

Interviewer: And what was the cause?

Respondent: I think when you look at the demographics of this place, there is a tea farm especially Nakigaranga which is enclosed in the tea farm; there are a lot of mosquitoes within that place.

Interviewer: Okay, tell me about your training in RHD, have you received any specific training in school or after school?

Respondent: Not really, I basically depend on my knowledge in training but I have not any inside training about that heart disease

Interviewer: But during school you had a ...

Respondent: Yes, and usually we would see heart diseases in wards especially in the medicine wards and they are common in adults. In children, not so much.

Interviewer: So have you received any training about rheumatic heart disease since you graduated?

Respondent: In-service training?

Interviewer: Yes.

Respondent: I have not.

Interviewer: Okay. How many patients with rheumatic heart disease do you usually see? Maybe in a day, week or month here at this health Centre IV?

Respondent: Okay, what I would say is that, most of these conditions come in and we don’t recognize them because of the exposure we have had in the field. When I was working in the village, when I would get a patient with a heart problem, it is true he has a heart problem and you know that by the time these patients come to us, they are presenting differently with severe complications. So we just identify then refer to Heart (heart institute).

Interviewer: Are those patients usually in-patients or out-patients?

Respondent: Out patients.

Interviewer: Out patients!

Respondent: When recognized that this patient had heart related conditions, we just refer not even to Entebbe but to the heart institute.

Interviewer: Which means you have not any specific in service training post-graduation. While here you have not had any rheumatic heart disease patients but you have seen some from somewhere else.

Respondent: Somewhere when I used to work in the villages of Wakiso in a place called [inaudible] ... we could see like three cases.

Interviewer: But you have not seen any here?

Respondent: Not yet.

Interviewer: So what is your understanding of the causes of rheumatic heart disease?

Respondent: Most of them are genital abnormalities but I remember it follows an infection; it could follow tonsillitis caused by a streptococcal resulting into a kidney problem. That’s what I remember.

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

Respondent: That one I am aware and I’m a bit conscious about that. So like, if I get a sore throat, I do a physical examination to know it’s a sore throat, after that I palpitate around here to check if it was normal. My scope is to identify and I refer. But again in my practice I have never seen like rheumatic fever, rheumatic; those ones I can identify ... [unclear audio].

Interviewer: So what were you told can be done to prevent rheumatic heart disease?

Respondent: One thing is screening, then getting capacity to the staff on ground about identification of heart diseases. Let all clinicians, in most of these health facilities we are all clinicians actually, you find nursing assistants seeing patients; you find a clinician seeing patients; you find a registered nursing officer and even the midwife seeing patients. So what’s missing now is that the health workers should be trained. At least the clinicians should be given inside training, the nursing officers and the enrolled nurses, like what they have done for TB. Each and every staff can recognize TB in children.

Interviewer: So according to you, you think that when the staff or health workers are trained in rheumatic heart disease, it will help?

Respondent: It will be recognized and if it’s manageable at our facility, we can manage and if it’s not manageable or in complicated form, then we can refer.

Interviewer: What else do you think can be done to prevent the development of rheumatic heart disease?

Respondent: One is early diagnosis and treatment.

Interviewer: Okay, thank you so much. Are there aspects of rheumatic heart management in which you need more training?

Respondent: Yeah, first of all is to be conscious about management of sore throat; if someone can manage it properly, it can prevent the consequences of sore throat. I need to be equipped with more skills in the diagnosis of rheumatic heart disease and maybe some medicines that are sensitive to that condition.

Interviewer: Which means, first of all you need in service training and then you need you need to know more about rheumatic heart disease and its treatment!

Respondent: I will be happy if I know the statistics; how is it? Maybe its distribution too; is it specifically in the areas of central? Is it Wakiso alone or even in districts like Mpigi?

Interviewer: Well basically, due to the prevalence of people who have been coming to UHI, the study has been done in the North was, the main place was Lira, and in the central, we are doing the research in Wakiso and also in the west. So it’s not that RHD patients are only in Wakiso but we are just using it as a baseline for the study and in the west we are using Mbarara.

Respondent: Okay.

Interviewer: About the statistics of rheumatic heart disease, the Uganda Heart Institute has done a study and I think it is on the internet. So you can get some of that information from there.

Respondent: Okay.

Interviewer: So, what is your understanding about the long term prognosis of RHD?

Respondent: I think it will be the failure of the valves, deteriorating and leading to, one of them is I think long term ... if at all they have stepped in and got the rheumatic patient early, it prevents complications which might be fatal to life. Because, if you get heart disease especially in children, it can be fatal to life.

Interviewer: Okay. According to you, do you think the long term prognosis is good or bad?

Respondent: It’s poor.

Interviewer: Okay, tell me about your encounters with patients with rheumatic heart disease; do you recall your last patient with rheumatic heart disease?

Respondent: Yeah, I think it was 6 years back. Usually they appear with complications; just your child might fail ... [unclear audio] but on close examination, to rule out whether or not the child is just mal- nourished child, when you palpitate the chest you find out that the problem is with the heart.

Interviewer: How did the last patient you saw present?

Respondent: Um, wasted; the patient was wasted and looked very weak, and I remember the mother told me in Luganda that “when she is playing, she can’t play very well. She plays just a little then rests.” So according to my teaching, I just knew that this is likely to be a heart issue.

Interviewer: So what is the average age of your rheumatic heart patients? Okay those ones you have seen. You told me you have not seen any here but about the ones you have seen?

Respondent: They are below seven years.

Interviewer: Below 7 years! And they are not working?

Respondent: They are not working

Interviewer: They are students? Because I need to know whether or not they are working; are they in school?

Respondent: They were out of school; they had this problem for a long period of time.

Interviewer: Okay, so they were out of school!

Respondent: Yeah.

Interviewer: Okay. So, are they generally aware of a link between sore throat, acute rheumatic fever and rheumatic heart disease?

Respondent: They are not aware.

Interviewer: They are not aware!

Respondent: To be honest even some of the health workers are not aware, and that is why I would plead for in-service training because we take tonsillitis simple and that it can be managed over the counter but, it is very common. Because even here, there was one time when I asked one of the staff, “are you aware that a sore throat can lead to a heart disease?” and she said, “Are you sure?” So even the management has issues with sore throat because even the gadgets we use in examining the sore throat don’t exist in these health facilities; the tongue depressors, touches, facilities don’t have them. The other hindering factor is a lot of patients; you can reach them but you just fail to examine them and when some of these conditions are not examined, these patients can go back. Whoever comes, our only impression here is malaria.

Interviewer: Which means that first of all, the patients are not aware of the link, the health workers are not aware, and then the health workers would have been learned but they don’t have enough time!

Respondent: Time with the patients especially for examination of patients, and then the equipment we use, tools like the tongue depressor. So there is a knowledge gap.

Interviewer: What sort of symptoms do these patients usually describe?

Respondent: in the initial stages in the children, its pain with swallowing and mostly parents say, “the child doesn’t eat” and when you check you find that she has some temperature and also has some irritation in the throat. After that, you can examine and tell.

Interviewer: Are these patients usually good with adherence to treatment or they are not?

Respondent: In children, adherence is determined by the preparation of medicine. Even right now, you just have Amoxyl to prescribe in its actual format and you are giving it to a child who is below 5 years! So, you have to instruct the mother to first open the capsule and then give. So even the preparations can affect adherence. So that is also another challenge, and majority of our patients can rarely take the full course of medicine for 7 or 5 days.

Interviewer: Rarely!

Respondent: rarely.

Interviewer: so this means they don’t complete the full course of medicine! Is it because the drugs are not there or?

Respondent: Absence of drugs is also another issue. Then the other gap is overall health seeking behavior; our patients usually come here after three days when the cough has been there for 4 days! So there is that poor health seeking behavior and the lack of essential drugs at the facility.

Interviewer: Okay. So what sort of barriers do they commonly state to get the care they need?

Respondent: I think that one of the problems could be that, our patients believe that when I go to the facility, you know they don’t come here to get information but to get medicine. So when they come here and we don’t have medicines, they’d rather stay away because they believe, “there is no medicine there” not knowing that seeing a trained health professional makes them get a proper diagnosis and maybe they can buy medicines. But for them they usually say “what am I going to do there when there are no drugs!” Some of us have sat with them during interviews and when we ask them what they have gained in health facilities they say, “Nothing!” and yet someone has gone through the lab and someone has seen you. So then you start explaining; at least you have gone to the lab and found that the patient has no malaria, then you give Amoxyl for three weeks, and then you compare your services with the private facilities. You say, “you have not paid for consultation here, you have gone to the lab and you have not paid for services in the lab and at least you know where the problem could be.” So patients come here to get medicine and if you don’t have medicine, actually there was one patient who told me (arrogantly), “Why don’t you just close this facility?” So people come to government facilities, they come here to get medicine. They are not aware that our presence here, that information is knowledge.

Interviewer: Okay, so what sort of barriers do you perceive these patients face in getting the care they need?

Respondent: I think one of them is lack of information.

Interviewer: The patients themselves?

Respondent: yes, and the poor health seeking behavior, then they know little about their health. Those are some of the barriers the patients face. Then for us here, we are understaffed of course, we don’t have logistics to use, we are limited in areas of diagnosis for some of these conditions. Personally, I trained 15 years back, so when you ask about rheumatic heart disease, only that I have been a senior officer who practices medicine, otherwise most of the senior officers aren’t practicing administration.

Interviewer: That’s right. So when you are senior officer practicing medicine, you are different from one in administration because the one part in medicine is seeing patients and the other is not.

Respondent: He is ever in meetings. Some of us refused to go and attend the meetings just because there is no way you can leave the patients unattended to. Besides, administration alone is enough for you because you will ever be moving up and down, and as a senior clinician, you ... [unclear audio]. So we are lacking CMEs about this condition, so the knowledge gap comes in.

Interviewer: Okay. So, we are going to talk about the local health system barriers; like in Wakiso district, what are some of the barriers do you have from administration and the leadership at the district, or what are the enablers or what works for you in this local health system?

Respondent: Yeah, one is that the structures are existing where we can see patients. Another one is that at the moment, issues of patients’ privacy are being addressed because we are having those structures being put in place. In some areas besides rheumatic heart disease, we are capacitated with knowledge of these conditions. Like in TB, at least each and every staff can recognize TB. In areas of HIV, majority of the staff is availed information in HIV care, circumcision and the like. But in regards to rheumatic heart disease, it could be news to some of the staffs. So some areas are being addressed. Of course infrastructure is some of the hindrances; we are not residents at this facility, so transport issues come in. like, I stay in Ntinda-Kiwatule, so the transport is much. However, if the health worker can be accommodated at the health facility, punctuality could be worked on. It would be so easy because someone could come directly from his house and come to the OPD.

Interviewer: Which means the issue of housing around the health facility is a barrier!

Respondent: Yes. Then um, if there are heart diseases, first of all that commends for investigations. Some of these health facilities, besides the clinical virtue that we possess, I would be very comfortable to have some heart investigations that could be in my catchment area ... [Audio cut short] [Audio resumes] technical support supervisions right away from the ministry, from the district and from health sub districts

Interviewer: There’s lack of technical supervision!

Respondent: Yes.

Interviewer: Okay. Wow, that’s good. Tell me about the funding of health care in general and specifically for rheumatic heart disease. How is the funding here? Are you aware about any information about funding?

Respondent: Well the government is trying to address those; it has tried to address its financial constraints in various angles.

Interviewer: Like?

Respondent: Like PHC comes at least every quarter.

Interviewer: What is PHC?

Respondent: Primary Health Care funds. It’s little but it has been coming. There are some days it delays but it has been coming. That one has somehow improved the infrastructures, the sundries and maybe maintaining the health facility cleanliness and paying some allowances, because I believe if we make integrated outreaches, the government helps training for rheumatic heart disease within the community because if every child is going for immunization it is recognized, but that comes back to the knowledge gap because the health worker will go there just focusing on immunization but an integrated is there to identify and then refer to the health facility or to ... in that case the health worker should have a referral form. But right now there has been RBF funding.

Interviewer: RBF is?

Respondent: It is Result-based Funds. That one is also likely to help make the staffs available at the health facility. Two; some of the money can be partitioned to ... [unclear audio]

Interviewer: Okay, tell me about the numbers and qualifications; are the health worker numbers enough and are they qualified? Are they able to see patients and provide proper quality of care to these patients?

Respondent: Yeah. What the health workers need is in-service training to address those conditions. The number here is optimum; it is relatively enough as compared to other health facilities which is a challenge; you find that you are 8 people working at a health center III and yet according to the Ministry, you are supposed to be around 15 staff. So here, we are about twenty because they made this health facility a Health Center IV but the structure of cadres here is within a Health Center III.

Interviewer: So tell me about your health information or medical record system, how do you do it?

Respondent: That one is improving especially in areas of HIV care and circumcision; they have been a drastic improvement in data quality management specifically in HIV. Recently stores have also improved; the management has also introduced a systems called RX Solutions which has also come on board and I have seen it on ground being applied.

Interviewer: What about the patients at the facility? Because I have heard that HIV, stores ... but what about the patients? How is their record keeping? Where do you keep you registers? In-patients and outpatients?

Respondent: Yes we have. We get registers straight from National Medical Store and others we get them from IPs.

Interviewer: What is IP?

Respondent: Implementing Partners. Actually of recent, the ministry, I think is in good relationship with IP Mildmay where they recruit ... , so its most of the required data improvement tools to see that there in-patient registers, stock cards and access them.

Interviewer: Do you have specific registers, for example registers for Acute Rheumatic Fever and Rheumatic Heart Disease?

Respondent: No, there is a register which combines all medical conditions with some specific areas of palliative care, TB. There has been upgrading of this register; at least every 2 years it is upgraded, so maybe next year it is this one to be upgraded.

Interviewer: So you don’t have an electronic system whereby you keep your data?

Respondent: Hmm! No

Interviewer: Okay. So do you have any guidelines and protocols for rheumatic heart disease care or a referral path such that whenever you receive a patient here, you are able to refer them to the necessary Centre?

Respondent: We use a general one because ...

Interviewer: The general what?

Respondent: Referral note, where you write the diagnosis, which may not even be a diagnosis but just an impression and indicative of the station where you are and where you are referring. That is the referral note, the referral booklets from NMS that are always provided as we pick drugs.

Interviewer: What about the guidelines and protocols, do you have them?

Respondent: We just use the UCG, that’s our guideline

Interviewer: What is UCG?

Respondent: Uganda Clinical Guidelines.

Interviewer: Okay. It’s that general one that works on all patients, you don’t have any for specific ...?

Respondent: No, and that is where TB has gone far (improved) because for it they provide guidelines and protocols for management and about care, so if we could get like working guides, it could work, just the way you see the one for TB.

Interviewer: Okay. Thank you so much. Umm, tell me the local health system enablers? How has this health care system or how has the administration made work easy for you to diagnose and see patients? How has the system enabled you?

Respondent: Through trainings and workshops, like we did some of this IMCI courses after I qualified, personally I have done palliative care; I have seen some heart diseases at Mulago Hospital. So it’s in- service training. Individually, the passion you have for patients drives you, like you feel “I have to go back and read about this condition. ” Right now, you have triggered me to go back and read about rheumatic heart disease.

Interviewer: Okay, that’s good. So generally, do you think these patients ... I am asking about the patient perception outcome; do you think patients get the care they need or not?

Respondent: About rheumatic heart disease?

Interviewer: Yes, about rheumatic heart disease especially surgery.

Respondent: They don’t.

Interviewer: Why?

Respondent: Umm, most of these, by the time you are admitted at Mulago for surgery, first all we don’t show our patients the diagnosis, so they may think that maybe its witch craft. So the perception of the illness, three we as health workers don’t tell our patients the true diagnosis and by the time they recognize that maybe this is a heart problem, these people have spent lots and lots of money. Even in public facilities, you have to pay there some money for ECG-ECHO.

Interviewer: Okay. So, tell me about patient safety.

Respondent: Then the other thing is health education; should anyone get a heart disease, it means death. So health education has a gap and yet some of these conditions are managed. People believe that some of these conditions are not managed. Actually the perception is that you have to get surgery outside Uganda.

Interviewer: So according to you, most of these patients don’t get the care they need because first of all they are not properly educated by us health workers!

Respondent: Yes, by the health workers and they also don’t know the real clinical picture of rheumatic heart disease.

Interviewer: Okay. Talk about patient safety and quality of care concern; do you think that when these patients come to us as health workers they get the proper quality of care and everything they need? For example if a patient came here, do you think they would get the care they would have needed for example in this health care setting?

Respondent: When you talk about quality, the quality of health care in government facilities is fair, that’s what I can say. It’s not good, not bad, but fair; that’s what I can say.

Interviewer: It’s not good or bad but it’s just fair!

Respondent: yes

Interviewer: What about the patients; are the patients safe with the health workers? Or should I paraphrase it; has there been any preventable death in this hospital?

Respondent: Maybe, depending on the condition.

Interviewer: Depending on the condition! Okay. Do you think patients are dying in the community without presenting to the hospital for care?

Respondent: Yes.

Interviewer: Why do you think?

Respondent: First of all it is their understanding of the illnesses is very important. The [unclear word] is many saying that maybe this is witchcraft and you know people still believe in using our traditional medicines before coming to the health facility. The percentage, is it 70%? So they first use traditional herbs before coming to the health facility. So the perception of the illness also matters a lot. Then another thing is that we are starting from ground; most of the health workers don’t go in the field to identify, health-educate, there is lack of information for us here to get facilitation and then move down. Right now why are we still suffering from malaria and yet we know the cause? Even the environment alone is ... [inaudible word].

Interviewer: So according to you the reason why patients in the community die is because we as health workers have not gone to that level; the village level to disseminate information!

Respondent: Yes

Interviewer: So they also lack that information so they end up not coming to seek care!

Respondent: Yes

Interviewer: Does that come back to the poor health seeking behavior you were talking about?

Respondent: One of them is the poor health seeking behavior and another one is facilitation of the health staff to go down.

Interviewer: so, the last question; in your opinion, what are the two most important things ministry of health should do to improve health comes in patient care?

Respondent: One of them is to equip the health staff and health workers on the ground with knowledge about rheumatic heart disease. Another one is remuneration of health workers; we are not well remunerated in terms of money. Then they should also improve the infrastructure which goes up to the health worker, and the other thing are the logistics.

Interviewer: Okay, thank you so much

Respondent: you are welcome

Interviewer: thank you so much for your time. That was quite ... [recorder stopped]