A Qualitative Feasibility Study Examining Barriers and Enablers to Establishing an Adult Peritoneal Dialysis Programme in Malawi

World Journal of Nursing Research | Vol 5, Issue 1

Table 1. Quotations from interviews with patients and HCPs outliningmajor and minor themes

Infrastructure and sustainability
“Efforts to expand and sustain the service should be made” (Patient 2)
“Increase the funding to the hospital so that the patient should not lack anything when they start treatment”. (Patient 16 re: PD)
“It could help the people who need dialysis but who cannot be enrolled onto chronic haemodialysis (hospital haemodialysis) due to lack of machines, thereby saving lives. A lot of people are dying because they don’t have access to haemodialysis.” (Patient 10 re: PD)
“There needs to be availability of other resources e.g. soap for cleaning” (Patient 6 re: PD)
“We need to ensure availability of antibiotics”. (Patient 7 re: PD)
“Mupirocin is not always available” (Patient 7 re: TCVC)
“Its needs a separate ward for patients to wait there before and after construction instead of mixing with all the medical clients” (Patient 8 re: AVG)
“Availability and variety of antibiotics. In the past they used gentamycin” (Patient 12 re: PD)
“One of the biggest issues is that we just don’t know how many people there are in conservative care (Low Clearance). There are no records of those people who are admitted to hospital with CKD or with renal failure but who aren’t referred for dialysis. We don’t even keep good records of the ones we know about who die whilst awaiting a space on dialysis.” (HCP 2)
“There’s nothing up North (in the North of Malawi). We’ve had patients who have had to move down from Karonga (town in North of Malawi). They only send acutes from Mzuzu (another larger town in the north) and often it’s too late. We’ve made attempts to provide upskilling at the local hospitals but its implementation that’s the problem. We went up there (to Mzuzu) for many weeks and we educated, and we trained. We took nurses and doctors and dieticians and trained the local team. That was nearly two years ago. And what’s happened since.... nothing! Not a single patient has had dialysis!” (HCP 1)
“The president needs to go. I’ll be voting him out next year. Five years ago one dollar was 750 MWK, now its one dollar for 2000MKW. 50kg of rice costs $70. How do I feed my family? There’s no political infrastructure. It’s absolute chaos. Disorganized inertia and corruption. And we’re trying to provide healthcare on that background” (HCP 8)
“The Malawian people are partly to blame. They want to put all the responsibility on the government and be reliant on handouts” (HCP 9)
“We know that there are over one thousand conservative care patients (CKD) patients. We don’t know the exact data though. They don’t come or don’t register everyone. Only about 400 are currently seen in conservative care (CKD out-patient) clinics. We know that about 85% of our registered patients present late (with established real failure). There’s a waiting list for dialysis. I don’t know how many…. A lot. The majority die before there’s a space (on haemodialysis) for them. We have to try PD as there’s so many dying with no option” (HCP 5)
“There’s no spaces on haemodialysis. There are 60 chairs. There’s no transplantation. No one is coming off the other end so there’s little scope to get on”. (HCP 6)
“Where there’s a will there’s a way. We just want what’s best for the patient” (HCP 7 (Surgeon) when asked about balancing the demands of elective AVF creation against all the other emergency surgeries

Education and training
“You need to be extra smart with PD. The nurses teach you to perform the dialysis at home”. (Patient 2 re: PD)
“It is easy to access because the doctors that do it come often” (Patient 4 with reference to fistula and visiting surgeons)
“We can’t manage the complications” (Patient 6).
“Lack of/ shortage of staff as it needs more time for someone to grasp the concept”. (Patient 4 re: PD)
“There’s need for intensive education. Once information is clear, this is my number one modality to use” (Patient 7 re: PD)
“There is need for thorough education on how to do PD and support for PD clients” (Patient 8 re: PD)
“I would not want PD because it needs smartness to prevent infection” (Patient 5 re: PD)
“It needs experienced surgeons who can be available to review the tubes from time to time” (Patient 10)
“By having skilled and well trained surgeons” (Patient 11)
“The procedure should be done by experts who have adequate training” (Patient 8)
“Capacity building by training our medical personnel so that they should learn how it works, how to fix and how to remove it.” (Patient 15)
“Most patients are not well educated hence it is difficult to comprehend what you are being told” (Patient 14 re: PD)
“Fistula First” (HCP 1)
“Patients getting sick because they are not following the proper procedures.” (Patient 12 re: PD)

Complications and management
Infection
Sanitation and bathing
“There is need to be thorough in terms of hygiene”. (Patient 4 re: PD)
“It’s flexible when bathing; you don’t stress about water coming into the fistula when bathing” (Patient 2 with reference to fistula)
“Problems with bathing- you can’t bathe properly; it easily gets infections” (Patient 4 re: TCVC)
“Once wet you get infections” (Patient 6 re: TCVC)
“Shivering a lot when connected to the machine” (Patient 10 re: TCVC)
“Bathing is very challenging because the catheter is not supposed to get wet. My experience of two years with a catheter was that, despite being careful, I got infections”. (Patient 7 re: TCVC)
“It shouldn’t get wet to prevent infections. But in some situations, it gets wet and it’s very difficult to care for it” (Patient 10 re: TCVC)
“The dust! You’ve seen it. It’s everywhere. It gets everywhere. How can you expect patients to keep anything clean with all that dust?” (HCP 5)
“From my experience, the survival rate of the PD patient is almost zero. The longest time a PD patient has lived for in Malawi is 4 years. They all die in a short space of time” (Patient 9 re: PD).
“As much as PD is needed in Malawi, hygiene will be a very big challenge because of the rooms (houses) we use. It is very hard to maintain good hygiene in most homes due to poor economic status”. (Patient 11 re: PD)
“For me, I am in construction, and I deal a lot with dust (there might be problems)”. (Patient 9)
“We have a lot of line complications. They are put in by one of the internal medicine specialists. We have had to repair arteries after a line has gone into an artery…. That maybe happens once or twice a year. Initially we insert a temporary line. It stays for about a month, but they’re almost all infected by then” (HCP 3)
“Why not use PD? We need to try again. Everyone is worried about infection, but we need to try” (HCP 6)
“Many patients shiver on dialysis” (HCP 6)
“Most of the patients who shiver on dialysis get better with some antibiotics” (HCP 3)
“Running water and electricity? (laugh). Not even in parts of Lilongwe. They’d need to use a well. It’s not developed yet.” (HCP 5)
Aneurysms
“It swells a lot if needles not properly inserted” (Patient 2 re: AVF aneurysm)
“We see a lot of big pulsatile fistulas that bleed for a very long time (sometimes 45 minutes after the needles come out” (HCP 4 describing central vein stenosis)
Comfort and pain
“Pain during needle insertion” (Patient 4 re: AVF)
“Abdominal pain when filling with PD fluid and complications such as catheter blocking. That’s what happened with me”. (Patient 1 re: PD)
“It uses the abdomen which is very uncomfortable” (Patient 10 re: PD)

Ownership and self-care
“You must squeeze a ball for it to mature” (Patient 3 with reference to AVF)
“It’s easy to care (for)” (Patient 2with reference to AVF)
“These have to be secured well with plasters.” (Patient 2 re: TCVC)
“I can just follow instructions” (Patient 10 re: PD)

Wellbeing and Activities of Daily Living
“Easy to take care of and patient stays with a happy life” (Patient 10 re: AVF)
“PD can improve quality of life since it is done a number of times a day” (Patient 7 re: PD).
“Since it is done every day, it is like the kidney is working normally” (Patient 8 re: PD).
“For me, I’ve had a line and a fistula. The fistula allows me to work well” (Patient 9).
“TCVC allows me the freedom to do a lot of activities like washing clothes and carrying heavy groceries since I am a girl” (Patient 10)
“I can get my boobs back out for my husband!” (Patient 8 who had AVF created and TCVC removed)
“It negatively affected school due to kidney failure and I dropped out after standard eight” (Patient 1).
“It is difficult to work effectively when spitting sputum mixed with blood” (Patient 3)
“My body is weak” (Patient 10)
“Sometimes I start experiencing shortness of breath at work. With kidney disease you easily get sick, suddenly feeling very sick and very weak that you can’t work and have to be instructed by someone. It’s really a challenge” (Patient 4)
“It’s hard to balance my business and dialysis. Dialysis is time consuming and some days you need to be doing business at the same time as my scheduled haemodialysis.” (Patient 11)
“I feel weak most of the time when I do household chores. It is impossible to continue to go to school. Since I missed classes, I didn’t pass the examinations”. (Patient 13)
“I have to skip work and classes to go to scheduled haemodialysis sessions. Sometimes I’m too weak to work due to complications of dialysis such as anemia” (Patient 3).
“It has impacted me a lot. Sometimes, I cannot go to places because I have to come here. I am thinking about coming to the hospital all of the time” (Patient 5).
“It has impacted in a lot of ways. Since in construction you do not fear the sun, so mostly I am weak. It has reduced the chances of where I can go. In fact, I can only work here (In Lilongwe). Also, because I’m a supervisor, I’m required to work in the sun which is very difficult” (Patient 10”.
“The impact is not only on work. Firstly, it disturbed my education. I failed to complete. Then I found a job from which I was dismissed due to low productivity since I was expected to go to the hospital two times per week for dialysis. In addition to that, I would also miss days when I was not feeling OK. I was also personally not satisfied with my performance” (Patient 8).
“It has affected me a lot because I rely on others to purchase my spare parts (to repair mobile phones). They sometimes lie to me. And my finances are reduced due to dialysis demands” (Patient 13).
“First of all, time management is very challenging, because the time you find a piece of work is the very same time you have to go to dialysis treatment. That means that whenever you are planning an activity, you need to consider your dialysis schedule. Sometimes it is impossible to go long-distance to work” (Patient 14).
“The beauty about PD is that it can be done anywhere. PD gives freedom of movement that one is able to go to school and work even in areas where they don’t have haemodialysis machines. PD makes one productive as you are able to go to school and work” (Patient 8).
“The average age of a patient on dialysis at KCH currently is 42 years. The average life expectancy of a dialysis patient in Malawi is 57 years. I can tell you that. It means that many of our patients are on haemodialysis for over 10 years. It’s a way of life for them” (HCP 1)

Cost
“Having kidney failure has affected the budget at home. The costs are higher costs. The costs of living is expensive.” (Patient 4)
“How can I find money?” (Patient 10)
“In terms of money, I am living a life of dependency on other people. I started getting sick when I was in secondary year 3. Even if I had finished school, it would be difficult to be employed.” (Patient 8)
“It delayed my school progression because of the cost of dialysis in terms of medications and transport. My guardians were not able to pay for my school fess for about 5 years (as they had to pay healthcare costs instead).” (Patient 1)
Travel
“PD is a tube inserted into a patient’s belly and a client is taught to use it for dialysis at home. It works like haemodialysis to removes wastes and excess water from the body. Special fluid is infused and thereafter water is removed, and the fluid becomes like urine. PD is good. You don’t spend money for transport. Your mum or dad helps perform bag exchanges”. (Patient 1)
“PD is nice because it only requires you to come to the hospital once per month or when necessary” (Patient 6).
“Stabilization of the economic situation. You can be at home buying fish with the money (otherwise used for transplant costs)” (Patient 10).
“It is simple. I will be doing it at home and come to the hospital just once in a while. Because with haemodialysis you are coming to the hospital two times per week, it’s hectic and you spend a lot of money on transport” (Patient 12)
“This treatment is performed at home. I have problems with transport. Most of the times I walk coming to dialysis. So, this one is best for me. I can just follow instructions” (Patient 7)
“There are a number of benefits. The first one is no breakdown of machines or lack of spare parts because we don’t use machines. The second one is that it is done at home, so it reduces transport costs. The third one is that you dialyze in your own free-time which allows you to travel long distance because it can be done anywhere”. (Patient 14)
“I believe it can help a lot of people especially those who stay very far away. Also, time management since you are doing it at home” (Patient 3).
“Some people can’t afford to travel to dialysis. These people die.” (HCP 1)