Chronic Kidney Diseases Management in Uganda

Advances in Medical Sciences

ISSN: 2315-9227

Vol. 2 (4), pp. 030-036, November 2013

Advances in Medical Sciences Journal homepage: www.scribesguildjournals.org/ams

Research Article

Chronic Kidney Diseases Management in Uganda *Sebudde Stephen and Owomugisha Innocent Ssanga Health and Environment Education Project P.O. Box 6717 Kampala Uganda Corresponding Author’s email:[email protected]

ABSTRACT Globally there have been commitments by governments and international agencies for example, the establishment of the Kidney Foundation and declaration of Chronic Kidney Disease as a global public health problem. This is aimed at ensuring that Chronic Kidney Diseases are integrated fully in the formal health care systems. This roll out of management needs to go hand in hand with prevention and proper counseling on diet. The access and adherence to medical management has implications for improvement in health as well. This paper describes how the management of Chronic Kidney Diseases in Uganda especially in the national referral Hospital Mulago is being challenged by inappropriate information to the patients and the interpretations of the side effects which affect continuity of treatment. Though there are no policies guidelines to support the clinical management the available guidelines are open to many interpretations by the service providers and other change agents in the Renal Unit. Also discussed in the paper is the use of food additives, the meaning of turning healthy while on treatment and abandoning the clinical care. The use of herbal remedies for the treatment of opportunistic infections and relieving pain in preference to western medicines seems to be another development leading patients to abandon or interrupt the clinical management is part of the emerging complexity. There is a general feeling that Chronic Kidney Disease attracts sympathy; there is benefit in being sick and stigma has been overcome by assuming normal life activities is discussed. On the positive side, the paper describes how the patients in a poor resource setting and with little external help has coped by developing locally available foods and fluids for nutritional rehabilitation, a shift from the use of manufactured nutrient supplements. Key words: Chronic Kidney Disease, Coping, Management, Resources

INTRODUCTION World-wide health problems are diverse varying from continent to continent. The health problems according to WHO (1997), are mainly AIDS, Tuberculosis, Malaria, Gastroenteritis and Hypertension. In Developing countries like Africa the picture is not different but even more pronounced than in the developed countries. Hypertension affects about 20% of the adult population, an estimated 691 million people worldwide. It is one of the major risk factors for heart diseases, stroke and kidney failure. Diabetes mellitus may present one of the most

Accepted on: 10th October 2013

daunting challenges in the future. The number is currently estimated to be about 135 million and it is expected to rise to about 300 million by the year 2025. While the increase in cases will exceed 40% in developed countries, it is anticipated to be in the order of 170% in developing countries (WHO 1997). This is why Chronic Kidney Disease is increasingly recognized as a global public health problem. (Levey 2007). There is a wide variation in the patterns of renal disease in different geographical areas. An earlier study showed that renal disease, especially glomerular disease, is more prevalent


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in Africa and seems to be of a more severe form than that found in Western countries (KibukaMusoke 1968).Naicker S 1998 in a study done in South Africa found out that Glomerulonephritis is characterized by a higher frequency in blacks, a lesser frequency in Indians and a lower frequency in whites. In their study Botha et al 2001 found out that, it appears that the increased prevalence of glomerulonephritis is influenced by chronic parasitic, bacterial and viral infections. In Uganda, there is limited and scattered literature on Renal Diseases. These are being categorized as under non communicable diseases according the Ministry of Health. (MoH 2005a; Rugunda 2013).This makes their focus and attention difficult to recognize, thus it makes almost impossible to quantify their magnitude in the community. The focused studies available are mainly retrospective in nature. They focused mainly on mortality data in Hospitals and pathology results. However, they provided an indication on the magnitude of renal diseases in Uganda. (Allison, 1962: KibukaMusoke 1968; Naicker 1998).These studies indicate that Chronic Kidney Diseases have been prevalent in the community for quite some time. However limited literature is available. There no information on knowledge of the community on chronic kidney diseases, management practices and policy frame works to improve service delivery. This study therefore is an exploratory study trying to examine the management of Chronic Kidney Diseases in Uganda so as to generate information on which services can be improved for the CKD patients. Statement of the problem Providing Heamodialysis and management of opportunistic infections is one of the ways to complete the management cycle for Chronic Kidney Disease and clinical management of CKD -related illnesses, psycho-social support, legal support and Nutrition. All these initiatives put in place normally targets people in urban areas. With the evolution of the socio-ecological environment many meanings and perceptions have evolved and even with the management of CKD. The communities being exposed for decades in one way or the other in a resource limited environment have developed mechanisms to cope with the challenges of accessing treatment, supportive mechanisms and new meanings may have been developed over time. The information provided in the


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process of initiating treatment in some cases may not necessarily be translated into practical use and hence posing a challenge for their use, continuity of treatment and compliance. Faced with the challenges of accessing treatment of opportunistic infections many local management practices emerged. This could be in the form of using herbal remedies, nutritional supplements and formation of groups to assist the members in one way or other. All these efforts need supporting policies and the resources to ensure that such actions benefit the primary users and the implementers. There are very few studies or none which have been done to examine these areas especially in a resource constrained environment. The conceptual frame work in figure 1. shows some interactions of the various factors influencing the health care approaches which were studied during the course of the research project. This study therefore is an attempt to elucidate how low income communities cope with management, what options are available to CKD patients, in case of lack of access to modern treatment methods like Dialysis as means of improving their livelihood. By using the community dialogue approach an understanding of community knowledge and management practices of CKD in a resource limited community can be explored with the service providers, community members and policy makers which is the purpose of this study. Objectives The main aim of the study is to describe the management practices for CKD in a resource limited environment as a means of improving access in Uganda using a community dialogue approach. Specific objectives 1. To examine the current descriptions used by the CKD patients and the community in classifying the various stages of CKD and the related signs and symptoms in the local context. 2. To identify the various health care initiatives by the communities in the management and control of CKD in a resource limited environment. 3. To examine the policy frameworks available in facilitating the various service providers to support the health care initiatives and the constraints faced.


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Vol. 2 (4), pp. 030-036, November 2013

Values of social networks ·

Factors influencing service provision

Aims of setting the network Values and benefits

·

Evaluation of Services at the Health facility · · · · ·

Choice Mode of service provision Diagnosis Treatment Follow up of the patients

· · · · Demand for Health Care services by the Community and Dialysis

Nationally District level Health facility

Improved social and Economic out comes

· Barriers · Policyframeworks · Attitudes · Values attached Access to Dialysis · · · · ·

Planning, Budgeting, Monitoring mechanisms · · ·

Attitudes Policy Knowledge

Costs Alternatives for providing care Inputs Incentives Remuneration methods

·

Evaluation methods of the whole approach

Figure1. Conceptual model on Interacting factors contributing to various health care management practices for opportunistic infections and the prevention of CKD in Uganda

Justification of the study This research was an attempt to improve on the collaboration between researchers and practitioners as well as the communities. The researchers interacted and discussed with the renal patients, Community members and policy makers. Discussions were held on the various health care initiatives, the use of Dialysis and how the communities are coping up with the limited access. The interaction with the service providers gave an insight on the barriers, facilitating factors and usefulness of the local health care initiatives and the use the various policy guidelines from the Ministry of Health. Mills and Gilson in 1988 developed a model to


examine the economic value of various actors in the Health System. They proposed many factors contributing to the provision of services some of which have been adopted in this model as shown in figure 1 below. This model helped to study how the various local initiatives can be promoted and supported. METHODOLOGY Research design A cross-sectional descriptive study was carried out in Mulago Hospital National Referral Hospital in Kampala District. This was carried out from November 2010 to November 2011, using participatory action research methods.


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Study area This is one of the National Referral hospital for Uganda, thus it serves the entire country. It is also a training centre for Medical Doctors, Allied medical staffs, surrounded by a number of Private Hospitals (Private for Profit and not for Profit Hospitals) scattered in and around Kampala City. Selection criterion of the study area This is the only Government Hospital providing services for Chronic Kidney Disease Patients at the time of the study. This provided an opportunity to understand how the CKD patients from different regions of the country access care and support in these communities which have been exposed for quite a long time but having limited services.

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This was followed by holding discussions with the CKD patients, conducting in-depths interviews with attendants to the patients, service providers and carrying out observations on the Clinical Management of Patients in Mulago Hospital. In-depth Interviews: In addition in depths interviews were held with 17 senior officers from the Ministry of health and Mulago Hospital Complex. These included program managers and heads of department. Observations during Clinical Management A number of patients accessing treatment were observed, on the wards, while on Dialysis, in the Laboratories, Radiology department and other diagnostic centers. In addition patient’s inpatient files, out-patient treatment forms and treatment sheets were looked at.

The Study Population DATA MANAGEMENT AND PRESENTATION The major focus of the research project was the population having CKD attending the Mulago Hospital Renal Clinic: males, females, attendants and their immediate relatives. The ages were mainly young people, young adults, adults and the elderly. In addition, the service providers, relevant heads of various hospital departments and policy makers provided additional information on the implementation frameworks available and policies. Data collection methods Qualitative data was collected throughout the study by using community dialogue approaches specifically in-depth interviews, meetings with CKD patients and Clinical Management observations. This method was adopted because it provides the researchers an opportunity to study social interactions as recommended by Hollander (2004). The main issues discussed included; knowledge on the nomenclature used to describe CKDs, staging, related signs and symptoms, management and control practices. In addition a review of existing health policies and strategic planning frameworks put in place in improving access to holistic care and support for CKDs. The following methods were used extensively: Community Dialogue meeting: As part of data collection a community dialogue meeting approach was organized at the Renal Unit. This had a total of 42 participants. These included CKD patients, sympathizers and attendants.


Data Analysis: The data was analyzed using thematic and content analysis. Data were read and coded manually to identify concepts, patterns and themes. The themes developed in the analysis. Quotes have been included as recorded verbatim but some editing has been done without losing the content and ideas of the respondents. Quality assurance As part of improving quality the Research Team members went through various participatory research methods, reviewed the previous study reports (KibukaMusoke 1968; Naicker 1998) and looked at key issues, which needed follow up and intervention. Ethical considerations Prior to the study discussions were held with the Head of Health Services in the Hospital and the Officer In charge of Non Communicable Disease Control program. Discussed issues emerging from the previous studies conducted on Renal Diseases. In addition, informed consent was sought from the participants in the study. The Lead researcher is also CKD patient who had had a Kidney Transplant done and attending in the same hospital. Study Limitations This was an exploratory study using qualitative methods only and the use of extensive literature


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review. Triangulation was done and this helped to improve on the validity of the study.

RESULTS Magnitude of Kidney Health Problems: Most of the respondents acknowledged diseases and infections affecting the Kidney are common in the community. Most of them recognized that some years back it was the disease of the elderly but now it affects all age groups and the young people. “My daughter is only 13 years. She has already got Kidney disease” (Community Member). “She got this Kidney problem immediately she finished Makerere University” (Attendant) However some of the respondents recognized hypertension and Diabetes as a major cause of Renal Failure. Some mentioned stress, drugs, women who have just produced and eating certain foods especially the fortified ones. But in some cases it was mentioned that a disease just comes on its own and witch craft. Swelling of the body, vomiting, headache and loss of blood were the common signs mentioned. The respondents recognized the high mortality and the severity of the infections caused by these diseases in the community. “I had an engineer friend of mine. He drove all the way from Mbarara to Kampala. He slept in Wandegeya Samalien Hotel with his wife. After breakfast he felt unwell, the wife drove him to Mulago. On reaching the hospital gate he collapsed and died. When a post mortem was done, it showed all the kidneys had closed long ago and none was functional”(Health worker) Management Options available to renal patients A number of management options are open to the patients. Some of them were using western medicines, nutritional management, spiritual healing and some traditional remedies as follows; The use western medicines: A number of drugs and medications are utilized which were not identified by most of the respondents. The majority did not know in most cases why they were using the drugs. However a few especially the educated ones mentioned the use of mainly anti- hypertensives and heamatemics. However these drugs were not readily available and


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hence patients or their relatives have to look for those medicines. However since there was no policy guideline for use of these medicines, the Doctors would determine which drugs to give. In addition to the use these drugs, Hemodialysis is initiated as part of clinical management. Heamodialysis: The process of initiating the patients on Heamodialysis was rather wanting as observed by the researcher. A patient is introduced to the Heamodialysis room by the staffs. There is minimal or no counseling done to the patients and attendants. There was no counselor at the time of the study. The doctor incharge revealed that for the initial treatment, a patient is put on the machine for 5 days. After 5 days, an evaluation is made by the doctor and then a patient is started on 2 to 3 sessions a week. These sessions must be adhered to without missing any since the machines are few. This was the cost breakdown by the time of this study as revealed one of the staffs of the renal unit. The total cost for the initial treatment for Heamodialysis was 2.6million Uganda shillings (About 1000 $ US dollars) for 5 days. However this exclude the hospital fees, which is totally different from this arrangement. This money included costs for the catheter, its insertion, iron sucrose, erythropoietin injections and the consumables to be used, while on Dialysis. There after the patient is to pay 820,000/ every week when she or he come for dialysis. It was revealed by that it is only when the money is realized that is when the doctor is called for a catheter insertion. This procedure is done under local anesthesia for about 30 minutes. After the procedure a patient begins dialysis. The patients are instructed not to take any pain killer or sedative. At the time of this study, there were six dialysis machines in the Renal Unit. The functioning machines were three and the others had broken down. One of them was missing a battery, another spare part and the third one the reasons un-specified. Those on dialysis use to have in most cases 2 sessions a week. Those who are be critically ill would access them 3 times a week. In emergency situations those who are slightly better would give way to the person who is badly off. Challenges and health risks in the Dialysis room Collapsing of the patients: There are some health risks and hazards mentioned by the Patients and the attendants while on dialysis.


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Several times the patients would collapse while on the machines. “Today you collapse on the machine then the following day your neighbor. Myself had already collapsed 4 times and but each time I recover I would say “I will not die now”. Incidentally or it is an advantage my wife who escorts me most of the time is not always around in the unit. (Patient Interview). In most cases as mentioned by staffs of the unit is caused by low blood hemoglobin levels, blood sugar levels and abnormal increase in blood pressure. This would be overlooked by the staffs. Some patients mentioned that, at times their body temperatures would abruptly change either very high or abnormally very low, while on the machines, and Shivering. There is warmer using electricity which saves the day. As soon as the patient becomes okay, then it is put on another person. Some patients who had been on dialysis for quite some time mentioned that they had never seen this blanket being washed, it had observable blood stains and smelling for quite some time. Most patients had adopted the idea of carrying their own bedcovers and heavy jackets. As soon as they would feel the shivering they immediately cover themselves. To most of the patients, they do not know the cause of the shivering. However some of staffs mentioned infection at the catheter site and may be underlying malaria infection. This effect most patients mentioned last for almost 10 minutes. Some patients mentioned that the body temperature change while at home after dialysis, especially during the cold weather. This prompts them cover themselves with very heavy blankets and warming on a charcoal stove or Fire place. Infections: The other risk mentioned and identified was acquiring infections from the machines and other items being used in the dialysis room. Though the staffs try to maintain the infection control practices there are so many gaps which the researcher observed in the process. The biggest challenge stems from the fact that one staff is at the unit handling 4 patients on the machines. These patients develop different problems. In one scenario One patient, had a venous needle out and blood has spilled down, another one, it was time to be disconnected, an emergency was been brought in from Intensive Care Unit and there was backflow of blood on another patient. All these procedures are lengthy in order to be collected. They require changing gloves, thorough hand


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washing and the element of time being very important. The researcher also found out that one of the patients traveled to India for a Kidney Transplant only to be told that she is hepatitis B positive. She had to wait for almost 7 month before the surgery. In the process her donor became uncomfortable and disappeared from her. She had to go through a laborious task for looking for another donor and additional costs to maintain her in India. There is also another patient who acquired hepatitis while on the machines. The researcher was told by staffs that he eventually passed away in the process after he had even secured a Kidney donor and money to proceed for a Kidney Transplant Surgery. Some of the patients acquired Tuberculosis and some never used to report and die off silently. Inadequate beddings: Some of the patients and respondents mentioned that there are some incidences when there are no bed sheets and bed covers on the mattresses. At times those available would are very old, torn in pieces and actually fit to be called rugs. Sometimes there are delays to secure them from the laundry “We have nothing to put on the beds. The laundry is not ready. If you can organize your beddings now we can put you on the machine. Otherwise you have to wait until those people are ready. But we do not know what time they will be ready”. (Staff at the Renal Unit) As measure the staffs encourage the patients who can afford, to bring their beddings in order to avoid embarrassments. The problem identified with this arrangement by the staffs is the cleanliness and sterility of these beddings. This could be a source of infection. Poor Records Management: The other management aspects identified was the Handling patient Records, logistics for the patient, supplies and medical drugs. These were poorly being managed. One of the staff at the unit mentioned that “in Mulago things are like that”. The way how records are kept is such that all the patient information while on dialysis is written in a book. The staff on duty is the only one knowing what he or she has written. Taking and Recording of weight is a patient responsibility. Whether the patient has taken it the right way or the wrong way that is his or her own business. The follow up information is not communicated to the patient. This is exemplified by the fact that some Patients come for dialysis well knowing that the staffs are aware that, this day a certain number of patients would require


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erythropoietin and iron sucrose. After 3 hours on the machine the staff comes around to inquire whether these drugs are available. Even to advise them to make arrangements to procure some in case they are out of stock or not available for any other reason. These would be some of the responses “I’m alone on the unit. I cannot go down to the stores. You will have these drugs next week. It seems your Hb is okay”. “My friend the store keeper is away. We are told he will be back after 2 weeks”. This means that in all these mishaps the patient needs to urgently make arrangements to secure 400,000 (Four hundred thousand Uganda shillings) about 200$ us dollars to cover this cost for these medicines from a Private Pharmacy. In case a patient fails to procure the medicines then he or she stands a risk of being transfused with 2 units of blood. Lack of Blood in the Bank: The staffs revealed to the researcher that at times the blood is not available in the Blood Bank. This can be for more than 2 days for certain Blood Groups. In such a case a patient is maintained on plasma expanders. If not possible then they would not be put on the machines until a unit of blood is secured. “Your blood is difficult to get. There is no single unit at the blood Bank. You have to wait may be in the afternoon, we shall have secured a unit. Meanwhile you can be sleeping on another bed. Long waiting hours: The Clinical reviews by doctors while the patients are on dialysis were identified as a big gap. They are sporadic, no specific schedule, no record of who is on call, and would target a particular patient. The patient is at liberty to choose the doctor to see. Then he/she makes arrangement where to find the patient and the time of the appointment. Some of these appointments used to be nasty for the patient and their attendants. Some of them mentioned that. “The doctor will say he/she will be available at 8.00 am in the morning, and then he/she arrives at 8.00 pm in the night. As a patient you have no choice. They are always right. They are only delayed but never late. Any way this is how we behave in Uganda”. (Attendant) Catheter Infections and their management at the unit: Most patients reported having got


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catheter infections in the process. A pus swab would be taken but at times the containers would not be available. Sometimes the samples are misplaced at the receiving laboratory. Depending on the results of the swab, treatment would be initiated by the Doctors. The medications were not available in the unit and the reason given by the staffs was that “they are very expensive and the hospital management cannot afford them”. The respondents mentioned that these medications are very expensive in most of the private pharmacies which have them and yet it this would be a hindrance to put someone on the machine. “Your catheter is septic. We cannot put you on the machine otherwise we might worsen your condition. Please first get treatment for the catheter site and then when the infection reduces we shall put you back.” Some of the patients who could not afford, this would result into severe sepsis and eventually deaths. Medications for cleaning the catheter site were identified also as a big problem. A patient in most cases would be required to purchase his own drugs to clean the catheter site. Those who could not afford, it was on God’s mercy. In the same way some patients react to the plaster used at the site, and then they are required by the staffs to purchase a type called “Primapore” which is not sensitive to the skin. In an event were a catheter becomes blocked during dialysis this would attracts extra use of heparin and applying pressure to unblock the catheter. In this process the flow of blood is temporarily stopped until the process is corrected. At times it would take minutes to hours or even no success in unblocking it. In an event were unblocking fails, then it means that patient has to buy a new catheter, pay the costs for its insertion and of course re-admission. The solution to all these would be to create an Arterial-venous fistulae on the left upper limb. This was an expensive operation for most of the respondents. The cost ranges from 2 – 3 Million Uganda shillings depending on how a patient or attendant negotiates with the surgeons to perform the operation. After a successful operation, then a patient would be lucky not have the Catheter infections and the costs there in. After 6 weeks, then the fistulae would “mature” for use by the staffs in the dialysis unit. Missed opportunities: The majority of the respondents mentioned that if the payments are


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not made on the day of dialysis, then there is no accessing the machine.

telephone calls you used to receive will dwindle; it’s only my wife who calls me”. (Renal Patient)

“You start your journey at 4.00 am. Move through the vehicle jam in the busy streets of Kampala or whatever distance you have traveled, then you are told that morning no accessing the machine. By the time you send someone at home for your copies it is almost afternoon time”.

There are some respondents who mentioned that they had received some psycho-social support. These received it from mainly and solely from the religious leaders like pastors, church lay leaders and reverends. The use of Herbal medicines and other combinations: Many of the respondents mentioned the use of herbal medicines, antioxidants and food additives. One of the respondents mentioned that he was approached by a lawyer advising him to use herbal medicines. He came to him while on dialysis.

The respondents mentioned that in such situations, the patients try out many sorts of things like, assuming normal life activities, accessing the machine once a week, coming only to change dressings because it was free of charge and only clinical reviews by the doctors. These are some of the voices from the patients and attendants: “Due to lack of money I negotiated with the staffs, such that I normally come once every Friday of the week and if I failed only change the dressing.” Nutritional Management Most of the respondents mentioned that they had received some information from the nursing staff on how they are supposed to deal with their diet. This included restrictions on meat products, little salt in diet, taking very little water about 300mls a day and avoiding all type of liquor. However the staffs mentioned that some patients do not adhere to advise given. “We had a young child in this unit. This patient kept on gaining weight and of course being readmitted every time. The parents discovered later that her young brother used share with her all the meals” Psychosocial Support The researcher found out that this is an area which is not exploited at Mulago renal unit and yet it is very important due to the chronic nature of the disease. The issues raised by the respondents on Adherence to treatment, putting a family together with limited resources, disappearance of key family friends, cutting off some social interactions and a total situation of being rejected by the society is a were noted to be big challenges to the majority of the renal patients. “The one hundred friends you have been moving with you will reduce to ten in number. The million


“My friend, I have my father who can manage these Kidney problems. I have seen patients being treated and they have recovered fully. Is it what you are suffering from? The total cost for the whole treatment, he is charging 600,000/= Uganda shillings.” Some of the respondents who had used herbal medicines at the same time on dialysis mentioned that the herbs they are using are very effective. Some of them confessed that they used to have swelling of the body which has now subsided. Some even would say we are now feeling much better. This in the end prompted some of the patients to abandon the dialysis. As a result they assume normal life activities and abandon the western medicines which are assumed costly. The reasons to resort to use of herbal medicines was the high costs of dialysis. Incidentally the staffs at the renal unit mentioned that some of the patients who have resorted to herbs come in with severe complications and side effects. They normally present with difficulty in breathing, swollen face and many other renal complications. The others who are not seen either recovered fully or die in the process. Faith and Spiritual Healing:Spiritual healing was also identified by the respondents as an alternative to dialysis. In this case the patients and their attendants move from Pentecostal church to church for spiritual healing and missing their dialysis sessions. In some cases the patients are required to pay some amount of money. This money is supposed to be put in an envelope and a place is booked for the patient such that the Pastor is able to pray for the sick and they have a special healing. One patient the researcher interacted with mentioned that


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“I have been moving with this pastor in town since last week. He has been having powerful crusades. When I felt that the swelling of my face was much and difficulty in breathing that is why I came in for dialysis. But as you know this was not my day. The staffs have told me wait until those who are supposed to have their sessions today have completed.” However when the researcher inquired whether there has been anybody who has been healed none of the respondents mentioned any. In fact during this period of study one the patients was a pastor and a leader of a powerful Pentecostal Church in Uganda. There was also wife of a retired Bishop, whom later on the researcher found out from the staffs at the renal unit that she passed away. The Use of Food Supplements and antiOxidants Some of the respondents mentioned that they are using nutritional supplements and antioxidants. These products are believed to be strengthening the body systems and eventually the person becomes okay. Those who had used them however mentioned that they have seen no difference and the costs involved are so high. The researcher was able to look at some of the composition of these products. In most cases they had a high concentration of sodium, potassium, calcium and phosphorus levels. Human resources for renal patients The researcher found out that this unit is managed by two Nephrologists, five Nursing Officers and the two attendants. However interviews with the staffs revealed that they are normally over stretched with the workload. Sometimes they work throughout the night; they are on call every day and their annual leave Rota’s are normally interfered with. They are not transferable to other departments and their options for promotions are limited. “We are very few in this unit and myself I’m not on Mulago Pay roll. There are some young whom we are trying to attract to unit may be they can take interest in the field.” In addition the Unit is backed up by a Senior Nephrologists working in Private Practice but previously working in Mulago hospital. When this officer was approached he mentioned poor management practices at the hospital as a major cause of his abandoning the hospital system and starting his own facility. At his facility there


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are Heamodialysis machines and equipped with enough medications and supplies. Resource Mobilization for Heamodialysis The researcher found out that the Patients are using different methods of mobilizing resources to cope up with dialysis costs and the medications. Some the patients are being supported by their employers, family members and some charitable organizations like the churches. Some of them were using simple cards with a message, text messages to mobile phones and use of internet to pass on information for support. Some are using fundraising dinners, printing T-Shirts and booklets. In the extreme cases the respondents mentioned that they have to sell some of the family assets for those who have them, to cope up with costs. As a way of moving the patients and the attendants have formed a “Renal Patients Association of Uganda.” Membership is open to all the Renal Patients in Uganda. It has a Secretariat based in Mulago Ward 6A. By the time of the study the association had over 60 registered members. However whatever method is being used, the respondents mentioned that they are facing challenges from being abused, non response from the people approached to being mocked. These are some of the responses from the respondents “When some of my trusted friends were approached, they abused me that you young girl you are just a fool who can give you all that money”. “This husband of mine left me here and went home. He just gave me only this money. I have no body to send in case I need something.” “What is he doing here? Let him just get the Kidney from his wife or relatives. They have the money and proceed to India.” The Hospital Support Systems for Renal Patients The researcher found out that the hospital systems mainly provide the hardware for the renal patients. They provide space for the Renal Patients though it is paid for every time a contact is made. Some emergency drugs are provided once in a while, cleaning the facilities, supplying water, paying the electricity bills, maintaining the machines, deploying and training of staffs. However due to the high costs of Renal patients treatment, the hospital privatized the renal unit.


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“My friend the best this hospital can do is to service the machines. But for the costs of drugs and consumables for the renal conditions we cannot manage. The budget is so small.” Some of the challenges mentioned by the respondents being faced by the patients in accessing hospital services included; exchange of laboratory results, reactions to blood transfusion, lack of specimen bottles, difficult in accessing reports and long waiting hours. “We cannot find your donors results. May be we have to repeat the tests. But even then we are still waiting for the material from South Africa. It is now 4 month but I think soon we shall have it. So we cannot do any Kidney Scan now may be you have to wait”. Policies in Place to support Renal Failure Patients: The researcher found out that there are no policy documents on renal diseases in Uganda by the time this research was carried out. At the Ministry of health level it was found out that renal diseases are under the program of Non Communicable Diseases Control with a desk officer in-charge at a rank of Senior Medical Officer. There is no documentation on Renal Diseases, a file, and a program to pass over information on Renal Disease information to the community under the Health Education and Promotion department. “Look I have all documents from some health organizations. But for Renal Diseases I have no single document. So how can I help? What I know they have some dialysis machines one or two. I do not know even whether they are working” Discussion of Results This was a small scale exploratory study on coping mechanisms for patients having Chronic Kidney diseases. Magnitude of the Problem The study results have shown that the community has recognized that Chronic Kidney Diseases are common and contribute to the mortality rates in the community. This is true for some studies which have been done in other parts of the world. (WHO 1998; Naicker 2004; Kheri 2002; McLigeyo and Kayima 1993).The late signs and symptoms are recognized an indication of lack of awareness. Focused


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attention on these diseases is required and fully integrated in the formal health care systems. Community Management and control of Chronic Kidney Diseases The use of Dialysis and Drugs in this community needs further approach in providing accurate information to the clients especially on the side effects and adherence to dialysis. Hindrance to assessing dialysis is affected by costs and knowledge on the importance of the treatment. This is true as some studies have also shown. (Naicker 2004; Kheri 2002; Barousum 2003; Moosa and Kidd 2006). Patients are being constrained by the lack of a clear understanding of the side effects of the drugs, costs and the importance adhering to Heamodialysis like what other studies have shown. (Barousum 1998; Evans 1985;Schieppati, Remuzzi2005). This has created a gap in the communication between the service providers and the clients. The wide use of herbal remedies in preference to the Biomedical or western medicines is demonstrated by the results which is true in Uganda. The herbal remedies and foods which are not harmful to patients need to be promoted. Those which appear to be harmful need to be discouraged especially those having excessive Potassium, Sodium and Phosphorus. This requires research. Psycho-social support is weak. Such patients who are on chronic care and long term treatment need constant counseling which one of the studies in Uganda suggested (Mutiti and Tom 2000) have suggested. Policy guidelines and implementation From the results there is no policy guidelines put in place by the Ministry of Health to provide guidelines on how various interventions can be put together in providing care and support to patients with Chronic Kidney Diseases. This becomes difficult for the service providers to provide a comprehensive package of management of patients with Chronic Kidney Diseases. Those programs which have extensive policies like HIV/AIDS have been fully integrated into the formal health care systems. (ACP/MoH 2006). There should be deliberate efforts by the Policy makers and Development partners should ensure that the policies are designed, operationalized and matched with the resources to implement them.


ISSN: 2315-9227

CONCLUSIONS This study has demonstrated that Chronic Kidney Diseases are a problem in the community and though early signs and symptoms are normally missed showing a knowledge deficiency on renal diseases. The various health care initiatives and management practices is an indication that a problem can be solved especially in a resource-limited environment and can be enhanced with limited support. The interactions with the service providers has shown that there are no policy guidelines put in place by the Government through the Ministry of Health for providing support for the provision of health care services to Chronic Kidney Diseases and hence controlling them.

RECOMMENDATION

Many recommendations were forth coming from the participants and as this report is being read and circulated many can be developed. There is need to create more awareness on the signs and symptoms of Renal diseases using various communication channels. This could be in forms, workshops, Seminars and during community meetings. The local signs and symptoms identified in this study can be used in describing community interpretations of Chronic Kidney Diseases. This needs more studies to be supported and done in various regions of the country. In order to have a better understanding of various management practices of Chronic Kidney Diseases it is better to work with the community using a community dialogue approach. This helps in identifying the potential of using certain approaches to care in promoting the accessibility to a wide range of services as demonstrated by the results. The use of various herbal remedies and foods needs to be promoted by the service providers and extensive research should done on the various readily available foods and fluids which can be promoted in this resource constrained community. The Policy makers and Development partners should ensure that policies are designed and operationalized for Chronic Kidney Diseases. These should be matched with the resources to implement them. This makes it easier for the


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beneficiaries of the policy and the implementers’ to have a common understanding on what is being proposed and the vision of the policy makers. This can lead to more tangible outputs being realized. This would help in increasing accessing services by the population. REFERENCES Allison BA (1962).Renal Disease In Uganda. A Retrospective Study BMJ Pp 898 Oct. /6,/1962 Barsoum R (2003). End-stage renal disease in North Africa.Kidney Int. Suppl 63: 111-4. Barsoum R (1998).Haemodialysis: cost-conscious endstage renal failure management. Nephrology 4: 96-100. D’Amico G (2005). Opportunities for a chronic disease outreach program in China. Kidney IntSuppl 68: 46-8. Evans RW, et al (1985). The quality of life of patients with end-stage renal disease. N. Engl J Med ; 312: 553-9. Please provide the full names of the authors Hollander AJ (2004). The Social Context of Focus Groups Journal of Contemporary Ethnography, Vol. 33 No.5, 602 – 637 Kheri V (2002). End-stage renal disease in developing countries. Kidney Int. 62: 350-62. Kibukamusoke JW (1968). Kidney disease in the tropics. East Afr. Med J 45: 632–637. Levey AS (2007). Chronic Kidney disease: Common harmful and treatable – World Kidney Day 2007. AM. J. Kidney Dis. 49: 175 - 179 Ministry of Health (2005a). The Uganda National Policy on the use Cotri-moxazole for the Management of Opportunistic Infections STD/ACP. Kampala Ministry of Health (2005b). The Uganda five year health sector strategic plan 2005 to 2009.Health Planning Unit. Kampala Ministry of Health (2000). The Uganda National Clinical Treatment guidelines.Quality Assurance Department. Kampala McLigeyo SO , Kayima JK (1993).Evolution of nephrology in East Africa in the last seventy years – Studies and practice. East Afr. Med J; 70: 362–368. Moeller S, Gioberge S, Brown G (2002). ESRD patients in 2001: global overview of patients, treatment modalities and development trends. Nephrol. Dial. Transplant; 17: 2071-6. Moosa MR, Kidd M (2006). The dangers of rationing dialysis treatment: The dilemma facing a developing country. Kidney Int70: 1107-14. Mutiti A , Barton T (2002).Northern Uganda Psycho-Social Assessment.CRC/UNICEF. Naicker S (1998). Patterns of renal disease in South Africa. Nephrology; 4: S21–S24. Rugunda R. (2013). Midterm Review Report of the Health Sector Strategic and Investment Plan (HSSIP) 2010/11 – 2014/15 Volume 1. Ministry of Health/WHO September 2013. Schieber G, Maeda A (1999). Health Care Financing and Delivery In Developing Countries.Health Aff (Millwood) 1999; 18: 193-205. Schieppati A, Remuzzi G (2005). Chronic renal disease as a public health problem: epidemiology, social, and economic implications. Kidney IntSuppl 2005; 68: 7-10. World Health Report (1997). Conquering Suffering, Enriching Humanity. World Health Forum 1997; 18: 248– 260.


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Not listed in the article Barsoum R (2003). End-stage renal disease in North Africa.Kidney Int. Suppl 63: 111-4. Barsoum R (1998).Haemodialysis: cost-conscious end-stage renal failure management D’Amico G (2005). Opportunities for a chronic disease outreach program in China. Kidney IntSuppl 68: 46-8. Schieber G, Maeda A (1999). Health Care Financing and Delivery In Developing Countries.Health Aff (Millwood) 1999; 18: 193-205. Moeller S, Gioberge S, Brown G (2002). ESRD patients in 2001: global overview of patients, treatment modalities and development trends. Nephrol. Dial. Transplant; 17: 2071-6.

State full names of authors not et al Evans RW, et al (1985). The quality of life of patients with end-stage renal disease. N. Engl J Med ; 312: 553-9. Please provide the full names of the authors
