1 ATTITUDES AND BELIEFS OF PATIENTS WITH CHRONIC KIDNEY DISEASE IN THE RUSTENBURG AREA, NORTH WEST REGARDING KIDNEY DYSFUNCTION Mmampu Magdeline Njoro Research Report submitted to the Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, in partial fulfillment of the requirements for the degree Of Master of Science in Nursing Johannesburg, 2015 2 DECLARATION I, Magdeline Njoro, hereby declare that this research report is my own work. It is being submitted for the degree of Master of Science in Nursing at the University of the Witwatersrand in Johannesburg. It has not been submitted before for any degree at this or any other University. Signature __________________ Date _________________ Protocol number: M130734 3 DEDICATION I dedicate this study to my late mother, my grandmother who was my pillar of strength and all the patients diagnosed with chronic kidney disease at dialysis unit where the study took place. A special thank you to all my participants, thank you very much sharing your experiences with kidney disease me, I am really grateful for your contribution in making this study possible. 4 ACKNOWLEDGEMENTS I am thankful to Almighty God for giving me the opportunity, the strength and wisdom to complete this study. A special thank you to my husband who stood by me through out and never stopped believing in me. Your support, patience and words of encouragements enabled me to complete this study. To my two daughters, Lesego and Palesa, thank you guys for your support, patience and understanding for neglecting you all the years during my study. To my two sisters and brother, thank you for understanding when I could not join you for family gathering while I was working on this project. I am grateful to each and every one of you. My sincere gratitude and special thanks also goes to the following:  My research supervisors, Mrs. Andy Hayward and Dr Sue Armstrong for their support, patience, and assistance in guiding me with my study.  Mrs. Helen Mmusi for assisting me with language translation, it was a time consuming and tiring exercise but you came through for me, and for that I thank you.  My friends and colleagues in the renal unit, guys your support and words of encouragement kept me going, thank you very much. 5 ABSTRACT Aim: The aim of this study was to investigate the attitudes and beliefs of patients with chronic kidney disease regarding kidney dysfunction in the Rustenburg area. Background: Kidney disease is still regarded as a low risk disease in Rustenburg, particularly among the rural community with low literacy level. Some of the people believe that chronic kidney is caused by driving heavy duty vehicles and hard labour whilst some associate the symptoms of chronic kidney disease with cultural disease resulting from failure to undergo cultural practices after the death of spouse or life partner. Low awareness of kidney disease results in patients seeking traditional cure that may cause further deterioration of their kidney dysfunction and progress to end stage renal disease, and therefore need lifelong dialysis or kidney transplantation. Research Methods: An explorative, descriptive qualitative research method was chosen for this study. Participants were patients with chronic kidney disease attending haemodialysis treatment at a dialysis unit of a level II public sector hospital. This dialysis unit provides both acute and chronic haemodialysis treatment and peritoneal dialysis training, and has eight chronic and two acute haemodialysis machines. Individual, face- to-face, semi-structured interviews were conducted using an interview guide (Appendix A). Participants were conveniently sampled until point of saturation was reached, and nine participants constituted the sample. Inclusion criteria were 18 years old and above, men and women, on haemodialysis for more than six months and willing to be interviewed. Patients who did not attend haemodialysis on the day of the interviews were excluded from the study. The interviews were audio-taped, transcribed verbatim and analysed according to Tesch’s method of qualitative data analysis. Significance of the study: This study uncovered the attitudes and beliefs of patients with chronic kidney disease regarding kidney dysfunction. Uncovering their attitudes and beliefs has enlightened nephrology nurses on future renal care initiatives that may improve both patients and the community’s attitudes and beliefs regarding kidney disease. Findings: The study has shown that chronic kidney disease has a profound and devastating impact on the patient, his family and significant others. The study further revealed that traditional healing and cultural health is still widely practiced by most of the patients with chronic kidney disease particularly in the rural areas. There is poor 6 awareness of kidney disease as well as risk factors associated with kidney disease among this community. Conclusion: This rural population was not knowledgeable about kidney disease nor the risk factors associated with this condition. Nephrology nurses should conduct kidney awareness campaigns in order to educate the patients and public about kidney disease order to correct their attitudes and beliefs towards chronic kidney disease. 7 TABLE OF CONTENTS PAGE DECLARATION 2 DEDICATION 3 ACKNOWLEDGEMENTS 4 ABSTRACT 5-6 TABLE OF CONTENTS 7-10 LIST OF FIGURES 11 LIST OF TABLES 12 CHAPTER ONE: OVERVIEW OF THE STUDY 1.0 INTRODUCTION 13 1.1 BACKGROUND OF THE STUDY 13-16 1.2 PROBLEM STATEMENT 16-17 1.3 AIM OF THE STUDY 17 1.4 RESEARCH QUESTION 17 1.5 OBJECTIVES 17 1.6 SIGNIFICANCE OF THE STUDY 17 1.7 OPERATIONAL DEFINITIONS 18 1.8 OVERVIEW OF RESEARCH METHODOLOGY 19 1.8.1 Research Design 19-21 1.9 OUTLINE OF THE STUDY 21 1.10 SUMMARY 21 CHAPTER TWO: LITERATURE REVIEW 2.1 INTRODUCTION 22 2.2 SEARCH METHODS 22 2.3 CHRONIC KIDNEY DISEASE AS A CHRONIC DISEASE 22-24 2.4 ATTITUDES, KNOWLEDGE AND BELIEFS ABOUT CHRONIC KIDNEY DISEASE 24-26 8 2.5 CULTURAL PRACTICE AND CHRONIC KIDNEY DISEASE 26-27 2.4.1 Impact of culture on chronic kidney disease 27-28 2.4.2 Spirituality and chronic diseases 28-29 2.4.3 Impact of culture on compliance 29 2.4.4 Cultural lifestyle and chronic kidney disease 29-30 2.5 HEALTH EDUCATION AIMED AT BEHAVIOUR CHANGE 30-33 2.6 SUMMARY 34 CHAPTER THREE: RESEARCH METHODOLOGY 3.1 INTRODUCTION 35 3.2 AIM OF THE STUDY 35 3.3.OBJECTIVES OF THE STUDY 35 3.4 RESEARCH DESIGN 35-37 3.5 RESEARCH METHODS 37 3.5.1Study population and sample 37-38 3.5 1.1Inclusion criteria 38 3.5.1.2 Exclusion criteria 38 3.5.2 Data collection 38 3.5.3 Data collection procedure 39-40 3.5.4 Data analysis 40-41 3.6 MEASURES TO ENSURE TRUSTWORTHINESS 43-44 3.7 ETHICAL CONSIDERATIONS 44-46 3.7.1 Gaining permission to conduct research 46 3.8 SUMMARY 47 CHAPTER FOUR: DATA ANALYSIS AND RESULTS 4.1 INTRODUCTION 48 4.2 SOCIO-DEMOGRAPHIC DATA OF PARTICIPANTS 48 4.3 THEMES 50 9 Theme 1 50 4.3.1 Emotional responses 50-51 4.3.1.2 Disempowerment 51-56 4.3.1.3 Relationships 56-61 Theme 2 4.3.2 Attitudes and beliefs 62 4.3.2.1 Influence from Peer and Friends 62-64 4.3.2.2 Influences from family members 64-65 4.3.2.3 Influence from cultural beliefs 65-69 4.4 SUMMARY 69 CHAPTER FIVE: DISCUSSION, RECOMMENDATIONS, LIMITATIONS AND CONCLUSION 5.1 INTRODUCTION 70 5.2 SUMMARY OF THE STUDY 70 5.3 DISCUSSION OF FINDINGS 70-73 5.4 RECOMMENDATIONS 73 5.4.1 Educational aspects 73-74 5.4.2 Recommendation for other stakeholders 74-75 5.4.3 Recommendation for nursing research 75 5.5 LIMITATIONS 75 5.6 CONCLUSION 76 6.1 REFERENCES 77-87 APPENDICES Appendx A Interview guide 88 Appendix B Information sheet for participant 89-90 Appendix C Participant’s letter of consent to participate in research 91 Appendix D Participant letter of consent for recording of interviews 92 10 Appendix E Participant’s demographic data 93 Appendix F Human Research Ethics Committee Clearance Certificate 94 M130734 Appendix G Letter of request permission to conduct research- North West 95 Department of health Appendix H Letter of permission from chief executive of the hospital to 96 conduct the research Appendix I Example of data analysis using tesch’s methods 97-100 11 LIST OF FIGURES FIGURE PAGE 3.1 Practical approach employed for data analysis 42 12 LIST OF TABLES TABLE PAGE 4.1 Summary of participants’ demographic data 48-49 4.2 Themes and sub-themes 49-50 13 CHAPTER ONE OVERVIEW OF THE STUDY 1.0 INTRODUCTION Chapter one is the overview of the research study. The reader is introduced to the background of the study, the problem statement, the aim and objectives of the study, the significance of the study and the researcher’s assumptions are included. Measures to ensure trustworthiness of the study, ethical considerations, research methodology that was adopted and lastly is the study outline are included in this chapter. 1.1 Background of the study Chronic kidney disease is a worldwide public health problem that affects mainly young adults who are still in their productive years in Sub-Saharan Africa (Sumaili, Cohen, Zinga et al. 2009). Marais and Jacobs (2014) reported in the South African Dialysis and Transplant Registry that 32.5% of kidney disease in South Africa was due to hypertension. Non-compliance with prescribed treatment results in grave complications such as chronic kidney disease. Chronic kidney disease cannot be cured but can be managed and its progression may be slowed with angiotensin calcium exchange inhibitors or angiotensin receptor blockers and lifestyle adjustments. However, the diagnosis may be unacceptable and difficult to understand for many patients and their families, based on their attitudes and beliefs for instance, “there is no such thing as incurable disease” (Tan, Hoffman and Rosas 2010:106).In a study on perception of hypertension Anthony, Valinsky, Inbar et al. (2012) showed that 66% of the patients who had difficulty accepting the diagnosis of hypertension were influenced by their knowledge and beliefs about hypertension. According to Ibrahim, Desa, Chiew-Tong (2011) the chronicity of kidney disease affects how the patients see themselves or relate to others and this may add to their stressful situation and therefore a desperate need to find a cure. At this stage the type of treatment that the patients or their families sought will depend on what they believe have caused the illness, which may be culturally influenced (Atobrah 2012). According to van der Hoeven, Kruger and Greeff (2012) different cultures may differ in their understanding of chronic disease and its treatment. If cultural causes of the disease 14 such as witchcraft or ancestral problems are suspected, traditional healing methods are often sought (Mphuthi, 2010). In modern society cultural perceptions of illness may be considered as old fashioned (Lakika, 2011). However, anecdotal evidence shows that in South Africa most of the patients particularly in the rural communities, often seek traditional help for their chronic kidney dysfunction. These patients often when they present themselves at the health care facilities for medical help, their kidneys dysfunction may have progressed to end stage needing dialysis treatment. In South Africa traditional herbal medicine is widely used for primary health care (van der Hoeven, et al. 2012).The World Health Organization (2000) define traditional medicine as the sum of knowledge, skills and practices based on the theories, beliefs and experiences of different cultures that are used to maintain health, to prevent, diagnose, improve or treat physical and mental illnesses. Most of the people who use traditional medicines consider them natural and safe (Torri 2013). However, according to Kara (2009) herbal products may be dangerous in patients with failing renal function. In addition to that, in a nephrology seminar report on natural medicine Vivekanand and Manish (2008), pointed out the renal toxicity and other adverse effects of traditional herbal remedies. On the other hand, seeking traditional help first often delays early diagnosis and initiation of proper medical intervention. The kidneys are the main organ for excretion of most of the substances in the body, including herbal substances (Vivekanand 2010). When the kidneys are damaged, they are unable to eliminate normal waste products including these herbal substances as well as maintaining fluids and electrolytes balance (Morton and Fontaine 2009). “If diagnosed early, patients with chronic kidney disease can be successfully managed with renal protective medication” McManus (2011). Unfortunately, the early stages of chronic kidney disease have no recognisable warning signs (Thomas-Hawkins and Zazworsky 2005). To add to that, Kara (2009) pointed out that some of the patients who used traditional medicine before seeking medical treatment do not often admit to having used herbal medication. When the kidneys have lost renal function, renal replacement therapy is often initiated. Renal replacement may be in the form of dialysis (haemodialysis or peritoneal dialysis) or kidney transplantation (Mucsi 2008). Although renal replacement therapy may improve the patients’ quality of life, the three renal replacement therapies are not without challenges particularly for the patients and their families. The patient who is receiving 15 dialysis therapy may feel overwhelmed by treatment demands and lifestyle changes that come with chronic kidney disease. Additional factors are the minimum dialysis resources particularly haemodialysis slots, lack of kidney donors resulting in limited transplantation (Naicker 2003) and transplant rejection. In addition, “rationing of services” limits the accessibility of renal replacement therapy for patients with chronic kidney disease in the public sector in South Africa (Naicker 2010). Nevertheless, unless patients with chronic kidney disease receive kidney transplantation they will need to continue with lifelong dialysis, diet and lifestyle adjustments (Ibrahim, Desa and Chiew-Tong 2012). The number of patients with end stage kidney failure receiving dialysis treatment in South Africa is increasing rapidly. The “latest reliable report of the South African Dialysis and Transplant Registry in 2012 showed that 8559 patients (52.3 per million populations) were on treatment for end-stage renal failure” (Marais and Jacobs 2014:12). This indicates the need for more educational interventions to prevent or slow the progression and the prevalence of chronic kidney disease. On the other hand, activities like world transplant games, education programs such as the annual International World Kidney Day and Kidney Awareness Week are intended to provide kidney awareness worldwide. However, ignorance on the part of the community, and or inability to access the media for this awareness campaigns information and inability of health care practitioners to reach all target groups including the people in the rural communities may render these activities ineffective. Despite the availability of dialysis therapy to sustain the lives of patients with chronic kidney disease some of the patients seem to favour traditional healers (Lotika, Mabuza and Okonta, 2013). This strong belief in traditional healers and traditional healing methods could stem from the knowledge about traditional medicinal plants acquired from their elders. Furthermore, traditional healing practice is considered African, and could be the way of people identifying themselves with their cultural background. Some of the people, particularly in the rural community, may not be familiar with chronic kidney disease (Sengwana and Puoane 2004), adding to their frustration about the diagnosis. In addition, the patient or family may not believe the medical diagnosis and may want to seek confirmation or cure from the traditional healers. However, whatever the reasons the patient has, Saleem, Hassali, Shafie, et al. (2011) state that patients suffering from 16 chronic conditions tend to employ self-management strategies that often result in worsening of symptoms. The communities of Rustenburg are mostly the Tswanas, and have their own cultural beliefs about health, illness and healing methods. Anecdotal evidence shows that majority of patients with chronic kidney disease in Rustenburg consult traditional healers for a cure after being diagnosed with chronic kidney disease. This results in patients not accepting their diagnosis and delaying seeking proper medical help (Mesfin, Newell, Walley, et al. 2009). They only seek hospital help when their condition has already progressed to chronic kidney disease. Sulimaili et al (2009) state that early warning signs of chronic kidney disease can be detected during routine renal screening. Unfortunately, Osamor (2011) found that most of the villagers prefer to consult traditional healers when they are sick before seeking professional care. Faith in traditional healers interferes with early diagnosis and effective management of chronic kidney disease (Goldstone, Mokone, Mongangane, 1978). The negative attitudes towards the diagnosis and non-adherence to recommended treatment lead to unfavourable clinical outcomes in patients on maintenance haemodialysis (Kim and Evangelista 2010). In her encounter with patients in the renal unit, the researcher confirmed acknowledgment by most of the patients of having consulted traditional healers and used traditional remedies after being diagnosed with chronic renal disease. This prompted the researcher to investigate the attitudes and beliefs of patients with chronic kidney disease regarding kidney dysfunction and its treatment. Positive attitudes towards chronic kidney disease and its treatment may facilitate the patients’ adjustment to the disease, and in turn improve their quality of life. 1.2 PROBLEM STATEMENT Every culture has its own beliefs about health, illness, illness causality and treatment, or healing methods. Despite the availability of modern medical technologies proven to improve the quality of life in the management of chronic kidney disease (Kara 2009), poor awareness of chronic kidney disease influenced by cultural beliefs about causes and treatment of kidney dysfunction poses a major challenge for the renal team in the Rustenburg area. 17 The community of patients at the public hospital in Rustenburg, in the North West Province is largely rural and traditional community mainly from the Tswana cultural group, many of whom first seek assistance from traditional healers for their chronic health problems, based on their cultural beliefs about illness and illness causality. Anecdotal evidence shows that majority of patients with kidney dysfunction consult traditional healers for cure before or after being diagnosed with chronic kidney disease. This result in patients presenting late at health care facilities when their kidney dysfunction has already progressed to chronic kidney disease requiring renal replacement therapy. It is therefore important that nephrology nurses acquire an understanding their patient's attitudes, cultural beliefs and practices about health and their healing methods. The information gained from the participants of this study may provide nephrology nurses with valuable information for informing on kidney awareness. According to Chang and Kelly (2007) an understanding of cultural influences on health care practices will enable the nephrology nurse to effectively individualize renal teaching plan. Educating the patients and the community of Rustenburg about kidney dysfunction will improve their attitudes and beliefs towards chronic kidney disease. This will ensure that patients pay attention to their kidney problems and seek professional help earlier. Community awareness of kidney disease is important in order to slow the progression of kidney dysfunction and better management of kidney dysfunction in future. 1.3 AIM OF THE STUDY The aim of the study was to investigate the attitudes and beliefs of patients with chronic kidney disease regarding kidney dysfunction in the Rustenburg area. 1.4 RESEARCH QUESTION What are the attitudes and beliefs of patients with chronic kidney disease at a level II public hospital regarding kidney dysfunction and its treatment? 1.5 OBJECTIVE OF THE STUDY  The objective of the study was to explore and describe the beliefs of patients with chronic kidney disease regarding kidney dysfunction. 18  To explore and describe the attitudes of patients with chronic kidney disease regarding the management of kidney dysfunction. 1.6 SIGNIFICANCE OF THE STUDY This study will uncover the attitudes and beliefs of patients with chronic kidney disease regarding kidney dysfunction and its management. Uncovering the patients attitudes and beliefs towards the management of kidney dysfunction may provide nephrology nurses with valuable information that will together with the patients’ inputs help to develop appropriate and effective health education strategies to improve community awareness of kidney disease in order to prevent or slow the progression and better manage kidney dysfunction in future. 1.7 OPERATIONAL DEFINITIONS According to Burns and Grove (2007) operational definitions derive from set of procedures or progressive acts that a researcher performs to receive sensory impressions that indicate the degree of existence of a variable. Operational definitions that are consistently used in this study are as follows: Patient: a patient is a physical, social and psychological human being who is having health problems or health needs that are not met. For the purpose of this study, patient means a person diagnosed with irreversible chronic kidney disease. Chronic kidney disease: Is a well-known concept used in nephrology which refers to damage to the kidney. Morton and Fortaine (2009) define chronic renal failure as irreversible damage to the kidney tissue resulting in the kidneys inability to maintain fluid and electrolyte balance and excrete waste products End stage renal failure: According to Kidney Disease Outcomes Quality Initiative (2002) end stage renal failure refers to patients whose renal function has irreversibly deteriorated to a point that they are eligible for, or are receiving renal replacement therapy Attitudes: A manner of thinking, feeling or behaving that reflects a state of mind or disposition. (American Heritage Dictionary of English Language, 2011). For the purpose of this study, attitudes refers to the way patients with chronic kidney disease and think about kidney dysfunction and their behaviour towards healing or treatment methods, which can be either positive or negative. Beliefs: Are a collection of thoughts, ideas and concepts moulded by education, culture, religion and parental and family influence which play a major role in opinion and 19 behaviour (Random House Kernerman Webster College Dictionary, 2010). For the purpose of this study, beliefs refer to(cultural, western or religious) practices that influence patients with chronic kidney disease regarding kidney dysfunction, causes and treatment. Traditional healer: According to Krige (2014) is someone who is recognised by the community in which he lives as competent to provide health care by using vegetable, animal and mineral substances and certain other methods based on the social, cultural and religious background as well as the prevailing knowledge, attitudes and beliefs regarding physical, mental and social well-being and the causation of disease and disability in the community. Traditional leader: is a respected member of the community, may be elected or born and is recognised by the community as their leader. According to Seiketso (2005) boswagadi (widowhood) refers to a cultural disease that is sexually transmitted if the remaining partner did not comply with mourning and ritual requirements. According to Tswana culture when a person’s spouse dies, the remaining partner must abstain from intercourse for a certain period, and be cleansed so he or she does not make any new partner ill. Sejeso: According to Golooba-Mtutebi and Tollman (2007) sejeso is something once ingested turns into live organism that move about and eats the victim from inside the body. Muthi: Refers to traditional medicines made primarily from plants or animals dispensed by herbalist or traditional healers. 1.8 OVERVIEW OF RESEARCH METHODOLOGY A qualitative, exploratory, descriptive and contextual design was chosen as the most appropriate research approach to gain the information required in this study. Exploratory- descriptive qualitative research is conducted with the purpose of exploring and describing a topic of interest. According to de Vos, Strydom, Fouche and Delport (2011:46) “qualitative approach is used to answer questions about the complex nature of phenomena, with the purpose of describing and understanding the phenomena from the participant’s point of view”. Data obtained from qualitative research is subjective and incorporates the beliefs of the participant and the researcher alike (Burns and Grove 2007). For the purpose of this study, the subjective beliefs of patients with chronic kidney disease are regarded as a valid source of information because they are experiencing the illness. In this study it is 20 assumed that attitudes and beliefs regarding kidney illness would best be described by patients with chronic renal illness themselves. 1.8.1 Research Design Polit and Beck (2012: 22) define research design is “an overall plan for obtaining answers to the questions being studied, indicate where the study took place, how data were collected and how data were analysed. A qualitative research design was chosen for this study. According to Burns and Grove (2007:24) qualitative design is a systematic, subjective approach, used to describe people’s life experiences and give them meaning. The main focus of qualitative research is to gain insight into the people’s attitudes, behaviour, value system, concerns, motivations, aspirations, cultures and lifestyle (Jooste 2010). In this study, the attitudes and beliefs of patients with chronic kidney disease regarding kidney dysfunction will be explored and described using an exploratory descriptive and contextual design. Explorative research design According to Jooste (2010) exploratory research is conducted in order to provide a better understanding of a situation. Polit et al (2012:24) further state that “exploratory qualitative research is designed to shed light on the various ways in which a phenomenon is manifested”. According to de Vos et al (2011) exploratory research can provide very rich, meaningful information or definitive explanations for particular individuals. Exploratory research is conducted when the researcher encounters issues that are already known but wants to know why things are the way they are”. In this study the researcher intends to explore the attitudes of patients with chronic renal disease living in the Rustenburg area, in order to gain insight into their attitudes and beliefs towards kidney dysfunction and its treatment. Descriptive research design Burns and Grove (2007), state that descriptive research is designed to gain more information about characteristics within a particular field of study. In qualitative descriptive design, the researcher “identifies a specific lack of knowledge that can be addressed only through seeking the viewpoints of the people most affected” (Grove, Burns and Gray 2013:66). Furthermore, descriptive qualitative studies “present the comprehensive summaries of a phenomenon or of events” (Polit and Beck 2012:26). In this study the attitudes and beliefs 21 of patients with chronic renal disease living in the Rustenburg area, were best described by the patients experiencing the disease. Contextual This study is of contextual design. According to Botma et al (2010), in a contextual study data are only valid in a specific context and findings are not necessarily generalized. The researcher focuses on specific phenomena because of their intrinsic and immediate contextual significance. This study was conducted in the dialysis unit of a level II public hospital in Bojanala district in the North West province. The unit was officially opened in 2012 and patient using the service of this dialysis unit are mainly Tswana people in and around Rustenburg. Many patients receiving dialysis at this unit are unemployed and are using public transport to and from their dialysis sessions. 1.9 OUTLINE OF THE STUDY The remainder of this research study is as follows: Chapter Two: Literature review Chapter Three: Research design and research method Chapter Four: Results and findings and Chapter Five: Discussion, limitations and recommendations 1.10 SUMMARY Chapter one is the overview of the research study and it presented the outline of the study, the problem statement, purpose, research questions and objectives and significance of the study of has been described. The assumptions of the researcher have been discussed and the operational terms defined. The following chapters will include a review of the literature, the methodologies, data analysis, the description and interpretation of research findings. The final chapter presents the discussion of the study findings, limitation of the study as well, and recommendations for future research and conclusions. 22 CHAPTER TWO LITERATURE REVIEW 2.1 INTRODUCTION This chapter introduces the literature reviewed for the purpose of this study. According to De Vos, et al (2011), literature review is aimed at contributing to a clearer understanding of the nature and meaning of the problem that has been identified. Since the focus of this study is on the attitudes and beliefs of patients with chronic renal disease regarding kidney dysfunction and its treatment, literature pertaining to attitudes, knowledge practice and beliefs towards chronic disease, culture and chronic diseases, help seeking behaviour and behaviour change have been reviewed. 2.2 SEARCH METHODS In order to review literature on attitudes and beliefs of patients with chronic kidney disease an online search for published and unpublished articles were retrieved through the following data bases were; Google scholar, Pubmed, BiomedScienceDirect, African Journals Online, Medscape and SAGE. Although the initial search was for articles that are five year old or less some of the outdated article were included because they were relevant to the current study. Only English articles were reviewed. Excluded were articles on transplantation since this is a topic on its own. The Harvard referencing style was followed. Since many of the citations contain multiple authors, I have selected to insert the first three authors for the first citation and thereafter only the primary author, in the document. In the reference list all authors are cited. 2.3 CHRONIC KIDNEY DISEASE AS A CHRONIC DISEASE World Health Organization (2008) defines chronic diseases as a disease of a long duration and generally slow progression. Most of the chronic diseases cannot be cured but can be controlled and managed with treatment. Puoane, Tsolekile, Sanders, et al. (2008) state that chronic non-communicable diseases are largely due to preventable and modifiable risks factors such as high blood pressure whilst diet and lifestyle modification may reduce the risk factors. On the other hand, Thomas (2008) defines chronic kidney disease as irreversible damage to the kidneys characterized by inability of the kidneys to maintain fluid and electrolyte balance and excrete waste products from the body. 23 Chronic kidney disease is a worldwide public health problem, both in developed and developing countries affecting mainly young adults in Sub-Saharan Africa (Sumaili et al. 2009). In a recent review article on complications of chronic diabetic mellitus in Africa Tesfaye and Gill (2011:45) reported that “diabetic nephropathy was the major cause of end stage renal disease in Sub-Saharan Africa”. Adding to available data on chronic kidney disease Naicker (2010), estimated that 45-52% of patients on renal replacement therapy in South Africa were as a result of hypertension and glomerulonephritis. In 2012 the South African Dialysis and Transplant Registry, reported that 8559 patients (52.3 per million populations) were alive and on renal replacement therapy for end-stage renal failure (Marais et al. 2014). Chronic kidney disease is associated with an increased risk of cardiovascular disease and death (Tan et al. 2010). Theofilou (2011) assessed the health beliefs and quality of life in end stage renal disease and found that the high burden of cardiovascular comorbidities affect the quality of life of the patients and dramatically shorten their life expectancy. An increase in the number of patients needing dialysis will have an impact on the already over stretched dialysis resources in South Africa. Since “1994, the population of South Africa has increased from 40.4 to 52.3 million people and (83.4%) of the population rely on the public health sector for services, with only a small proportion, about (16.6%) covered by medical insurance and being serviced by the private sectors” (Marais et al 2014:10). Furthermore, Theofilou, (2011) stated that as the cost of death and disability due to chronic kidney disease rise, productivity particularly in the developing countries will significantly reduce economic growth Unless kidney donors are available for transplantation, patients with end stage renal disease undergo lifelong dialysis therapy. Unfortunately, rationing of renal services in South Africa limits the accessibility of renal replacement therapy in the public sector (Naicker 2010). The incidence of end stage kidney disease requiring dialysis continues to increase at an alarming rate despite the available treatments to slow the progression of kidney disease (South African Dialysis and Transplant Registry 2012). As stated earlier, the progression of kidney disease can be slowed, therefore the challenge lies upon nephrology nurses to develop and implement effective health education programs to improve awareness of chronic kidney disease in their communities. According to Plantinga, Boulware, Coresh 24 (2008) better management of patients with chronic kidney disease can slow the progression of the disease which depends largely on early recognition of the disease. However, medication adherence is affected by patients’ beliefs about their illness and treatments (McManus 2011). Patients with positive attitudes towards chronic kidney disease and belief in the manageability of the condition will facilitate effective management of their condition. Nephrology nurses should be aware of their patients’ attitudes and beliefs towards kidney dysfunction and its treatment in order to better manage patients with kidney dysfunction in future. This study sought to explore the attitudes and beliefs of Tswana patients with chronic kidney disease regarding kidney dysfunction and its treatment. 2.3 ATTITUDES, KNOWLEDGE AND BELIEFS ABOUT CHRONIC KIDNEY DISEASE According to Timmers, Thong, Dekker, et al. (2008) once a diagnosis of chronic kidney disease has been made, the patients will create their own models and representation of the illness in order to make sense of, and respond to the illness they are faced with. Atobra (2012) states that culture greatly influences how the patient will respond to the disease and their choice of treatment they will make. If the patients believe that the cause of their illness is supernatural or witchcraft they are more likely to seek traditional or spiritual healing (Atobrah, 2012). An article on anthropological issues in renal care Crowley-Matoka (2013) examined the beliefs and practice that people in some of the European countries have regarding their kidneys. In this study Matoka found that in the United States kidneys are culturally less important, whilst in China the kidneys are of vital importance. Based on how they perceive their kidneys, Chinese are more likely to take care of their kidneys than in the United States. The absence of the signs and symptoms of the disease on the other hand, may lead to patients not accepting their condition and become non-compliant. A study on perception of hypertension Anthony et al. (2012) showed that 66% who had difficulty accepting diagnosis of hypertension were influenced by their knowledge and beliefs about hypertension. 25 In another study Costantini, Beanlands, McCay et al. (2008) explored the self- management experience of people of people with mild to moderate chronic kidney disease. The study found out that the absence of signs and symptoms of an illness is a barrier to self-care since the patients cannot make the link between the need for medications and feeling well. This may result in the patients underestimating the seriousness of their condition (Thomas-Hawskins and Zazworsky 2005). Most of the patients including those who are at risk of developing chronic kidney disease lack knowledge about chronic kidney disease. Regrettably, even some of the patients who have been diagnosed with chronic disease do not understand the disease. Wilkinson, Randhawa, Farrington (2011) assessed awareness of renal complications in diabetes mellitus and they found that familiarity with diabetes did not lead to awareness and understanding of diabetes renal complications. Similarly, a cross-sectional survey aimed at assessing the patients’ awareness of chronic kidney disease Plantinga et al. (2008) found poor awareness of chronic kidney disease in patients with stages 1- 4 chronic kidney disease. Poor awareness of chronic kidney disease might be due to various reasons. It could be lack of effective health education strategies to address the patients’ level of understanding or inadequate knowledge on the part of healthcare professional. The other reason may be a lack of knowledge about the seriousness of the condition or ignorance on the part of the patient or due to the absence of the symptoms of the disease as stated by Costantini et al. On that note, Boulware, Carson, Troll (2009:1127) concluded that “low perceived risk and concern regarding chronic kidney disease development or progression among hypertensive and diabetes may reflect lack of knowledge of chronic kidney disease”. Several studies have documented factors that may influence the patients’ attitudes toward chronic kidney disease. Age of the patient at the time of a diagnosis with a chronic disease plays an important role in the attitudes and beliefs of the patients toward the disease. Kara (2009) investigated the attitudes of patients with chronic kidney disease undergoing dialysis in Turkey, and found that elderly patients had accepted their condition as terminal and opted for palliative care. However Thomas (2008), found that the diagnosis of chronic kidney disease was more devastating for young patients. In contrast, in her study Atobrah (2012:50) stated that “narratives by young people specified that they readily accepted chronic disease diagnosis without showing any feelings of denial”. 26 The acceptance on the part of the elderly could be due to the fact that elderly patients might feel that they have lived long enough, that they are ready to die. Patients who show positive attitudes towards chronic kidney disease are able to adapt easily and are able to positively live with the condition. Furthermore, due to the nature of the disease and its demands on lifestyle, psychosocial problems are also common in patients with chronic kidney disease and may put a lot strain on them. Morton, Tong, Howard et al. (2010) studied the views of patients and carers in treatment decision making for chronic kidney disease and found that “most of the patients and their families perceived chronic kidney disease as a life threatening disease that caused a lot of uncertainty about their future”. According to Partridge and Robertson (2010) the prevalence of anxiety and depression in adult dialysis patients ranged between 24.7% and 18.6%, with high levels of body image disturbance in for both male and female respondents respectively study on illness perception and depression in patients with end stage kidney disease, Ibrahim, et al. (2011:221) found that depression was a common psychological problem among Malaysian patients with end stage renal disease. Negative attitudes towards chronic disease as manifested by emotional response might stem from difficulty accepting the diagnosis and treatment to lack of proper counselling after being diagnosed and lack of support structures. However, a study aimed to evaluate end of life-care preference and needs of patients with chronic kidney disease in Canada, Davison (2010) found most of the study participants have accepted chronic kidney disease as a terminal disease and were willing to discuss end of life issues with family and nephrology staff. Negative attitudes towards chronic kidney disease delay adjustment to the disease whilst positive attitudes help the patients make meaningful decisions about their lives. Kim and Evangelista (2010:271) “state that negative perception of disease may lead to unfavourable clinical outcomes in patients on maintenance haemodialysis”. . 2.4 CULTURAL PRACTICE AND CHRONIC KIDNEY DISEASE Cultural beliefs play an important role in determining the people’s attitudes and beliefs towards chronic disease. According to Leininger (1985) culture is learned, shared, and transmitted values, beliefs, norms, and life ways of a specific individual or group that guide their thinking, decisions, actions, and patterned ways of living. Cocks and Moller (2002) found that using medicines to cleanse the body through purging is common a practice, and is believed to be a “cure all” among Africans. In their study 27 Cocks et al. (2002) also examined the use of traditional medicines for customary purposes. One example is that of curing boswagadi [widowhood] (Seiketso 2005). On the other hand, Shaw, Huebner, Armin, et al. (2008) state that in some cultures patients with diabetes may be reluctant to modify their eating habits when they feel that the recommended changes require them to give up culturally meaningful habits and practices for example, fasting as related with Muslim religion. The treatment method that is decided on may be based on advice from a family member, friends or peers based on their attitudes and cultural beliefs. However, the type of treatment that the patient will follow will impact on the disease outcome, either positively or negatively. 2.4.1. Impact of culture on chronic kidney disease Although chronic kidney disease cannot be cured, the progression of chronic kidney disease can be slowed with renal protective medication” McManus (2011). When end stage kidney renal failure is diagnosed dialysis therapy can be initiated in order to sustain the life of the patients. However, cultural practices may impact on the management of chronic kidney disease. If patients or the family members strongly believe that there is a cure for the disease, it may be difficult to convince them otherwise. The patient or family members may refuse hospital treatment and leave and leave the hospital to seek different healing methods. As indicated by Osamor (2011) some of the patients or family members may continue to consult different healers even if there is no improvement with traditional healing methods. In “South African black culture everything happens for a reason” (Mphuthi 2010). Chronic disease may be attributed to the ancestral anger or witchcraft, and help or treatment will be sought from a traditional healer who will advise on an appropriate solution, for example a cleansing ceremony to ask for forgiveness from the ancestors or to cast out the evil spells. According to Fyhrquist (2007) medicine is widely used by many South African people for their primary health care. However nephrotoxic potential of herbal remedies is being increasingly recognised (Vivekanand 2010:11) according to Naicker (2010) the intrinsic functions of the kidney expose them to high concentration of toxic substances. Vivekanand and Manish (2008) found that most of the patients admitted to South African hospitals with acute renal failure followed the use of traditional remedies. In addition, about 60% of the cases that were hospitalised were severe and required dialysis (Vivekanand et al. 2008). A study in Bangladesh by Hossan, Hanif Agarwala et al. (2010) 28 found that traditional plants are used treat some ailments such as sexually transmitted diseases and urinary problems. In another study in Turkey, Kara (2008) found that some herbal products are used to prevent kidney failure. However, Vivekanand (2010) maintains that patients with pre-existing chronic kidney disease can develop complications due to herbal medicine. Furthermore, some of the patients may receive lay advice from friends or family elders and self-medicate with medicines bought over the counter or use home remedies. In a study on use of complementary and alternative medicines in Australia, Armstrong, Thiébaut, Brown, et al. (2011) found that most of the chronically ill population use complementary or alternative medicine to treat their chronic condition”. According to Armstrong et al. (2011), alternative or complimentary medicines are vitamin/ mineral supplements or natural/herbal treatments, whether they are prescribed or bought over the counter. According to Cocks and Moller (2002) self-medication using traditional Xhosa remedies bought at amayeza stores (chemist) is the first choice when illness is diagnosed and it is common practice among most African population. However, the safety of all these medicines that are not prescribed remains a concern, particularly in patients with impaired kidney function. Torri (2013:27) argues that firstly, these “herbs sold as food supplements or as over-the-counter items are unlicensed, secondly, are not regulated by the Federal Drug Administration with the same scrutiny as conventional drugs, and thirdly, there may be risks of contamination or adulteration with poisonous metals, and non- declared herbs or conventional medicines”. On the other hand, some of the lay community may associate chronic kidney disease with unsafe living conditions. The perception that the patients have about the causes of their chronic kidney disease may result in them not seeking help for kidney problems. 2.4.2 Spirituality and chronic disease According to Finkelstein, et al (2007), spirituality refers to an attempt to understand the meaning and purpose of life and in patients with chronic kidney disease spirituality reflects a broader interest in quality of life issues. It is common for some of the patients, particularly those who are diagnosed with chronic disease to seek spiritual help for healing or to cope with the disease. As evidenced by recent mass media regarding the different denominations, spiritual healing also plays an important role in the lives of patients with chronic illness. However, the concept of spirituality may be understood differently by individuals or societies based on their cultures and beliefs. Regrettably, according to Finkelstein, West, Gobin et al. (2007) 29 some of the patients may misunderstand spiritual cure and abandon hospital care or prescribed treatment in favour of spiritual healing. Religion is a powerful source of hope, meaning in life and peace of mind in patients with end stage renal disease Ibrahim, et al. (2012). In another study on the treatment of epilepsy in the rural community of Northern Tanzania, Winkler, Mayer, et al. (2010:162) found that “34.1% of the participants believed that Christian prayers can cure the cause or treat the symptoms of epilepsy”. In a study on knowledge of hypertension among traditional healers, Meli, Nken-Chunag, Doutsop (2009) found that some of the traditional healers who believed that hypertension results from non-respect of traditional rites, suggested spiritual healing methods for their patients. Furthermore, Finkelstein et al. (2007) found that there was longer survival for those patients who were more religious. . 2.4.3. Impact of culture on compliance Non-compliance to prescribed treatment is still a major problem especially among patients with chronic diseases. Compliance to medication can slow the progress of the course of the disease, reduce development of complications and prevent morbidity and mortality” (Ibrahim, Jirjees and Mahdi 2011). Cultural beliefs about chronic diseases interfere with the effective management of chronic diseases, for example a patient with chronic kidney disease upon becoming a widow/widower, depending on their cultural beliefs may be required to undergo cleansing ritual by drinking traditionally brewed medicine for a certain period to cure boswagadi (widowhood). Cocks and Moller (2002) did a case study on the use of indigenous and indigenised medicines to enhance personal well-being in South Africa. In this case study they found that applying medicines to purge or clean the body internally taken as an emetic or enema to prevent or to cure an illness is a common health practice among Africans. A study carried out in Gauteng province in South Africa, found that “hypertensive patients with poor blood pressure control were also taking traditional medicine concurrently with western medicine” (Lotika et al. 2013:2). Furthermore, a study on perceptions and experiences of a patient on anti-retroviral therapy in Gauteng by Mongwenyana (2012:35) revealed that “patients stopped taking their anti-retroviral medication on the advice of traditional healers with the belief that the patient has been bewitched”. On the other hand, in a study that explored patients’, traditional healers’ and psychological counsellors’ perception of illness, Zondo (2008) found that traditional healers valued the importance of western medicine and has been referring their patients for the treatment of chronic diseases like human immune virus, diabetes and imikhuhlane (common colds) However, McManus (2011:3) maintains that the “patients’ beliefs about their illness and treatment 30 affect adherence.” A patient with chronic kidney disease with swollen legs who believes that he has been bewitched because he walked over muthi may not accept the diagnosis thus not comply with prescribed treatment. 2.4.4. Cultural lifestyle and chronic kidney disease Culture, as previously defined by Leininger (1985) guides the thinking, decision and action of an individual or a group. Obesity due to rapid urbanization and change in lifestyle predisposes people to hypertension and type II diabetes (Puoane, et al. 2008). Hypertension and diabetes affect all age groups, men and women, irrespective of one’s socioeconomic standing. However, there are still widespread misperceptions about hypertension and diabetes mellitus. In their study on the difference in help seeking behaviour in South Africa, van der Hoeven et al. (2012) pointed out that chronic diseases are associated with persons of high socio- economic status whilst infectious diseases are only prevalent among persons of low socioeconomic status. A person from a poor background may deny or ignore a diagnosis of hypertension or diabetes which could lead to serious complications including renal complications. Puoane et al. (2008:79) examined measures for the prevention of non-communicable disease in South Africa and stated that “beliefs and attitudes about body image such as “thinness” are associated with personal problems or Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome is a barrier to maintaining a healthy body weight”. However, maintenance of a healthy weight through diet and physical activity reduce the risks of developing hypertension Puoane et al. (2008). These beliefs about disease could be a potential key barrier to healthcare seeking and adoption of preventative measures (Gulshan et al. 2011). The association of chronic diseases with a person’s social standing can also have a negative impact on the medical management of chronic disease. Puoane et al.(2008) further indicated that some of the people may ignore complying with healthy eating habits and maintenance of a healthy body weight in order to avoid being stigmatized, and may in turn develop hypertension or diabetes that may result in renal complications. 31 2.5 HEALTH EDUCATION AIMED AT BEHAVIOUR CHANGE According to the World Health Organization 2002, health education refers to any combination of learning experiences designed to help individuals and communities to improve their health by increasing their knowledge or influencing their attitudes (www.who.int/topics/health.educ). Mshuhqane, Stewart, and Rothberg (2012) state that health behaviour are actions of individuals, groups, and organisations that develop into consequences that include social change, policy development and implementation. In order to develop an effective health education plan for patients with chronic kidney disease, nephology nurses should first assess the patients’ level of understanding, of the disease including their cultural beliefs about chronic kidney disease. According to Thomas-Hawskins and Zazworsky (2005) assessing the patient’s perceptions is important because firstly beliefs strongly influence self-management and supportive approaches should be tailored accordingly. On that note, Nkosi (2012:92) also concluded that “understanding all the causes of illness whether from ethno medicine point of view or from a bio-cultural perspective is important and must guide the approach to prevention and treatment strategies”. Secondly, nephrology nurses should consider the psychological readiness of their patients and their family members. Psychological preparedness will improve and enhance patient’s understanding of the information being given and will cooperate during health education. If the patient or family members are struggling to accept the condition they should first receive social and psychological counselling before being given health education. According to Verschuren, Enzlin, Dijkstra et al. (2010) acceptance plays an important role in the psychological functioning of patients with chronic diseases. Thirdly an appropriate teaching model for the patients should be developed. Lastly plan and agree with the patients on both dialysis slots, health education dates and times that suite them all in order to ensure full participation. Bodenheimer, Loring, Holman et al. (2002) highlighted two elements of the chronic care model. The first element of the model embraces collaborative care in which the renal team as an expert in chronic kidney disease and the patient as an expert in their care both share the responsibility and form partnership in the management of the disease. 32 As the main role player in this partnership the patient’s health education needs should therefore be assessed by both the patient and the nurses who are planning the program. Addressing and treating the patient as clients rather than as a patients may boost their self-esteem and feel that their opinion are valued not as a patient but someone who can make a positive change in their lives. Health education programs that include easy to understand information on chronic kidney disease, the causes, including risk factors and management of the condition and importance of adhering to prescribed treatment will yield positive results. According to Vermeire, Hearnshaw, Van Rooyen et al. (2001) presenting health education in a clear and simple manner may correct the patients’ perception and aid recall of information given. Health education should focus on removing the possible barriers to seeking medical help for chronic kidney disease. All the patient’s concerns and health problems should be taken seriously. The possibility of these liquid mixtures of worsening the condition of the patients with chronic kidney disease should be thoroughly explained to the patients and the family members. Educating and advising patients against the use of these medicines should be non-judgemental but rather be informative. Vermeire, Hearnshaw, Van Rooyen et al. (2001) suggest a coaching and non-judgemental approach and examination of what can achieved by the patient. A discussion time may be arranged as a one on one session depending on the patients’ preference to provide an opportunity for personal questions and answer time. The second element that Bodenheimer et al. (2002) highlighted is self-management education whereby the patients are taught techniques on how to manage their chronic kidney disease. Patients’ health education program must be tailor-made to empower patient with basic knowledge and skills on how to cope with chronic kidney disease for instance, fluid management. According to Nunes, Wallston, Eden et al. (2011) more knowledge of disease increases patients’ participation and self-management behaviours in patients with end stage renal disease. Furthermore, health education talks should emphasize that chronic kidney disease is not curable but manageable and the dangers of using of non- prescribed medicines should be stressed. Follow-up sessions on health talks given or one on one sessions should be done to evaluate the patient’s understanding and behaviour and progress. Vermeire et al. (2001) state that in order to aid recall information given to the patient must be repeated, stressing critical points and the patients’ understanding must also be checked through feedback. 33 In order to maximize health promotion intervention Vaughn, Jacquesz and Backers (2009) suggested the use of lay health workers for promotion of health education. Lay health workers can either be home based care assistants or community leaders who will be used as gatekeepers. Vaughn et al (2009) believe that lay workers are effective because being from the same community they are able to use their cultural knowledge when providing service to their community. As described by Mphuthi (2010) social support is very important in the management of chronic kidney disease therefore, family members should be involved in every aspect of the patient’s care. Health education aimed at behaviour change should focus on the patient’s family. The family members should also be included in the health education planning and implementation. Mshunqane et al. (2012) suggested that health talks should not be given to the patient in isolation but should include the patient’s family members. Peer education may be a valuable patient education tool to facilitate effective learning. Patients can be encouraged to talk to each other and share information on how to cope with their disease on living with the disease. Funnel (2009) suggests that peers with the same problem for example strong cultural beliefs on traditional imbiza (traditional brewed mixture) can either be paired together or the one who has had a successful behaviour change coaching others. Lastly, the importance of follow up and the reasons for honouring appointments should be explained and discussed with the patient during all health education sessions. According to Vermeire et al. (2001) non-compliance with scheduled appointment may create problems for health care delivery and also have important effects on health outcomes. Primary health care professionals working in the community close by and are often the first ones to see the patient before the hospital professionals, and they are therefore an important source of information at primary level. Thomas (2004) suggests that nephrology nurses should work with primary health care professionals and develop a patient-centred health education programme to empower patients to effectively manage their hypertension and diabetes mellitus focusing on renal care awareness. As indicated earlier, early diagnosis and treatment is important, therefore this partnership will also ensure early referral to the renal doctor/nephrologist. Educational interventions aimed at empowering patients are successful in chronic kidney disease management (Erick 2012) Community awareness campaigns using radio and television talk shows and in local newspaper can be used to educate the public about kidney disease. Vapputuris, Hogan, and Shoham (2010) assessed community 34 perspectives on kidney disease and health promotion in North Carolina and participants suggested canvassing, mail, newspaper advertisements, and television spots to provide community with information on kidney disease. According to Pouane et al. (2008) a television educational program like Soul City was effective in educating the public and led to positive behaviour change towards diseases like hypertension. This program resulted in increased knowledge and awareness of high blood pressure, including adoption of lifestyle to prevent and treat hypertension (Puoane et al. 2008). The programme was also presented on radio in order to reach those who do not have television sets. To add to that, Wakefield, Loken and Hornik (2010) pointed out direct and indirect methods to affect behaviour change using mass media campaigns.  Directly: Mass media can directly and indirectly reach and change behaviour of the whole population. Mass media is aimed at evoking emotional response of the audience. Mass media intend to affect individual decision making. Remove or reduce the obstacle to change, help people adopt healthy or recognise unhealthy behaviours.  Indirectly: Mass media can set and increase agenda for discussion about a particular health issue. Since media can reach a large audience, behaviour change can be influenced without the person being directly involved with the campaign. Prompt public discussion on health issues that can influence behaviour change. 2.6 SUMMARY This chapter has provided a review of the literature regarding chronic kidney disease as a chronic disease, attitudes and beliefs towards chronic kidney disease, impact of culture on chronic kidney disease and on compliance. Lastly health education for behaviour change. The next chapter the research methodology will be discussed. 35 CHAPTER THREE RESEARCH METHODS 3.1 INTRODUCTION This chapter presents the research methodology adopted for this study and includes the study design, the study setting, population, sample and sampling methods, the inclusion criteria, data collection methods as well as data collection procedure. Measures to ensure trustworthiness of the study and ethical procedures followed are also discussed in this chapter. 3. 2 AIM OF THE STUDY The aim of the study was to investigate the attitudes and beliefs of patients with chronic kidney disease regarding kidney dysfunction in the Rustenburg area 3.3 OBJECTIVES OF THE STUDY  The objectives of the study were to explore and describe the beliefs of patients with chronic kidney disease regarding kidney dysfunction.  To explore and describe their attitudes and beliefs towards the management of kidney dysfunction. 3.4 RESEARCH DESIGN An overview of the research design and methods used in the study will be discussed. The research design is the overall plan for obtaining answers to the question. According to Polit and Beck (2012), research design indicates the type of study, where the study will take place, how data were collected and how data were analysed. A qualitative approach was chosen for this study. According to Polit and Beck (2012), qualitative methods are useful for exploring the full nature of a little-understood phenomenon. In this study a qualitative exploratory descriptive approach was employed with the purpose of exploring and describing the attitudes and beliefs of patients with chronic kidney disease regarding kidney dysfunction Qualitative Research 36 Qualitative research is a systematic enquiry. It tries to find meaning in something and usually addresses areas of human behaviour and existence. Qualitative research methods entail an in-depth exploration and description of a phenomenon (Botma, et al. 2010). Qualitative studies employ interviewing techniques in order to understand respondents’ feelings, meanings, and behaviours. According to Jooste (2010) the focus of qualitative research is to gain insight into people’s attitudes, behaviour, value system, concerns, motivations, aspirations, cultures and lifestyle In this study, the researcher sought to explore and gain insight into the attitudes and beliefs of patients with chronic kidney disease towards kidney dysfunction and its management. Exploratory study According to Jooste (2010) exploratory research is conducted in order to provide a better understanding of phenomena. Exploratory study is conducted when the researcher encounters issues that are already known but wants to know why things are the way they are (de Vos et al 2011). Exploratory qualitative research is designed to shed light on the various ways in which a phenomenon is manifested (Polit and Beck 2012). Objective of exploratory research is to discover ideas and insights. Exploratory research can provide very rich, meaningful information or even definitive explanations for particular individuals. In this study the researcher gained insight into the attitudes and beliefs of patients with chronic kidney disease towards kidney dysfunction. Descriptive study Descriptive study is designed to gain more information about characteristics within a particular field of study (Burns and Grove 2007). The researcher identifies a specific lack of knowledge that can be addressed only through seeking the viewpoints of the people most affected (Grove, Burns and Gray 2012). In descriptive research, the researcher intends to describe a population with respect to important variables. In this study the researcher intends to describe beliefs of patients with chronic renal disease living in the Rustenburg area, regarding treatment of chronic kidney disease. Context of the Study According to Jooste (2010), context is the setting of the study and refers to the environment, the geographical location where the study will take place and where the researcher can guarantee the results obtained.This study is of contextual design, focusing on patients with chronic kidney disease receiving dialysis treatment at a level II 37 provincial hospital in the Rustenburg area. In contextual studies, data are only valid in a specific context and findings are not necessarily generalized (Botma et al 2010). Research setting The current study was conducted in the dialysis unit of a level II public hospital in the Bojanala district, in the North West province. Bojanala Health District is situated in the eastern part of the North-West Province, at the border of Gauteng in the South, Mpumalanga in the East and Limpopo in the North. Bojanala is one of the four districts in the North-West Province and it is made up of 5 Sub-Districts namely, Kgetleng, Madibeng, Moretele, Moses Kotane and Rustenburg. This District has 1 provincial hospital, 4 district hospitals, and 13 community health centres, 16 clinics operating on a 24 hour basis, 88 clinics, 646 mobile points and 15 health points. Within Bojanala district, the City of Rustenburg represents the major industrial and mining infrastructures as well as tourism facilities. Bojanala Health District serves a total population of more than about 1.3 million which forms more than a third of the whole population in the province, with only one state owned dialysis unit at the level II provincial hospital in Rustenburg. This state of the art dialysis unit was officially opened in February 2012 by the North West Member of Executive Committee of Health. The unit has nine nephrology trained nurses, three professional nurses, one 2nd year Bachelor of Technology clinical technologist and two general professional nurses. Since the unit was opened, it was under the supervision of a physician, who was also the head of department of internal medicine at the institution. After the physician resigned in April 2014, a nephrologist from the Gauteng province offered his voluntary service and has been visiting the unit once a month since then, to assist the medical officer who has been assigned to take over the care of patients. The unit has eight haemodialysis machines for chronic haemodialysis patients. The unit also offers acute haemodialysis and peritoneal dialysis training for patients who opted for home dialysis, and runs a monthly conservative clinic as well. The unit receives patients referred with kidney disease from all the Bojanala health care facilities mentioned above. Many patients using the service of this dialysis unit are from a Setswana cultural background from the rural communities around Rustenburg. Most of these patients are unemployed and use public transport to access the dialysis unit. 38 3.5 RESEARCH METHODS 3.5.1. Study Population and Sample Research population is the entire group of persons or objects that is of interest to the researcher or meet the criteria that the researcher is interested in studying (Brink, et al 2012). Patients on haemodialysis come to the dialysis unit on alternate days for their dialysis treatment. The population in this study included all patients with chronic kidney disease receiving haemodialysis treatment for longer than six months at a level II public sector hospital. The researcher personally approached the participants and invited them to participate. Information rich participants, with background knowledge of chronic kidney disease were deliberately selected based on the inclusion criteria. These patients were selected, as they are on haemodialysis, which indicates that they have progressed to end stage kidney disease and should have gained experience and understanding of their kidney disease and its management. It was therefore, assumed that they can best inform the researcher about the topic under study. Participants were recruited using convenience sampling method. Convenience sampling entails using the most conveniently available people as study participants (Botma et al. 2010). Participants were selected until the point of saturation was reached and nine participants constituted the sample. According to Polit and Beck (2012), data saturation, is sampling to the point at which no new information is obtained and redundancy is achieved. In this study saturation was reached with nine interviews. All participants were given information letters (Appendix B) and the contents were explained in Setswana to ensure that they understood. Inclusion criteria All men and women between the ages of 25 and 52 were included in the study. Participants were receiving haemodialysis treatment for more than six months and were able to communicate well. Participants who willingly agreed to be interviewed and have signed consent (Appendix C) and also agreed to have the interview recorded evidenced by signed consent form (Appendix D) were included. Exclusion criteria The study excluded all patients who were hospitalized or did not report for haemodialysis on the days of the interviews. Pregnant patients were also excluded from the study. 39 3.5.2. Data collection Data collection took place while the participants were connected to their dialysis machines as agreed with participants so as not to take additional time. The researcher gave information letters to each participant and explained the contents of the information letter before commencing with the interview. The researcher was responsible for collection of data. The participants were informed about the use of an audio-tape during the interviews and written consent forms (Appendix D) were obtained from each participant. Each participant was reminded against the use of identifiable names during the recordings and confidentiality was assured. A tape recorder was used to record the interviews. The researcher collected data through an individual face-to-face semi- structured interviews guided by self-developed interview guide, (Appendix A.) consisting of five open-ended questions. According to de Vos, et al. (2011) semi-structured interviews are used in order to gain a detailed picture of a participant’s beliefs about or perceptions or accounts of, a particular topic. The interview schedule was used to keep the participants focused on the research topic. Face-to-face interviews helped the researcher to gain cooperation from the participants. The researcher was able to observe non-verbal gestures, clarify ambiguous answers by seeking follow up answers. After each interview the recorded data was copied and electronically kept on the computer for later coding. An access code only known by the researcher and her supervisor was used to access the recorded data. Data was collected over a period of two weeks however data analysis was challenging and time consuming therefore it took two months to complete. 3.5.3. Data collection procedure Once all patients were connected to their machines, and all patients served and finished their breakfast, and everyone had settled down the researcher commenced with data collection. The researcher then made all staff members aware of the interview in progress and requested not to be disturbed. The curtains were closed for each participant before commencing with the interview in order to ensure privacy and to minimize distraction. The researcher introduced herself to the first participants. The researcher then asked if the participant was ready for the interview and whether we could start. Demographic data including age, sex, marital status, living arrangements were noted (Appendix E) for each participant prior to the interview. 40 Guided by the interview guide (Appendix A), the researcher posed a series of questions as per interview schedule. Central questions that each participant was asked are as follows: “ How did you feel after you were told that you have kidney failure”? “What is your opinion or experience regarding the use of traditional medicine/healers to treat kidney disease”? “Some people believe that kidney problems are due to failure to undergo cultural practice after the death of spouse/life partner. What is your comment on that”? Clarification and reasons were sought through probing but the participants were allowed the freedom to answer in their own words. Field notes were taken during the interviews on non-verbal communication as well as participant behaviour during the interviews. One participant per day was interviewed and each interview lasted between 20-30 minutes although more time was initially allocated. Language used Participants in this study were Setswana speaking and mostly had secondary education. Participants requested to be interviewed in their home language and the request was granted. This removed language barriers and allowed the participants to approach the topic with clear understanding and confidence. 3.5.4 Data analysis The purpose of data analysis is to organize, provide structure to and elicit meaning from data and it occurs concurrently with data collection (Polit and Beck 2012). The assistant utilized as a translator transcribed data verbatim in Setswana from the audiotapes, and thereafter translated the transcribed data from Setswana to English. The translator is a qualified professional nurse with a Master’s Degree in nursing administration and public service administration and is employed as a nursing service manager at the local district hospital. She is Tswana speaking and she can speak, write and understand both Setswana and English well. Data analysis occurred concurrently with data collection. Two co-coders, one a nephrology nurse specialist and lecturer and a nurse educator with a PhD assisted the researcher with data analysis guided by Tesch’s (1990) eight steps of qualitative data analysis. The results of the study were obtained and an explanation of each step is presented below: 41 1. Get a sense of the whole. Read all the transcriptions carefully. Jot down some ideas [in the one margin] that came to mind. 2. Pick one document (i.e. transcript of an interview) most interesting one, shortest one, the one on the top of the pile. Read through it, asking yourself ‘What is this about?’ Do not think about the substance but look for the underlying meaning. Jot thoughts down in the [same] margin. 3. Read through several participants’ data and do the same as in step 2. Now make a list of all the topics which comes to mind. Form these topics into columns (maybe major topics, unique topics, and leftovers). 4. Now take this list of topics and go back to the data. Abbreviate the topics as codes and write codes next to the appropriate segments of the text. See if new categories and codes emerge. 5. Find the most descriptive wording for your topics and turn them into categories. Look for ways of reducing your list of categories by grouping categories that relate to each other. Perhaps draw lines between categories to show interrelationships. 6. Make a final decision on the abbreviation for each category and alphabetize these codes. 7. Assemble the data material belonging to each category in one place and perform a preliminary analysis. 8. If necessary, recode existing data. 42 Figure 3.1 Practical approach employed for data analysis using Tesch’s methods for qualitative data analysis. Researcher reads each transcript carefully, whilst simultaneously following the recording; jot down some ideas [in one margin] that came to mind. Comments and observations noted as field notes are also read, ideas jotted 1. Get a sense of the whole. Read all the transcriptions carefully. Jot down some ideas [in the one margin] that came to mind. Step 2 Researcher and co-coder pick one short and interesting transcript, read through it, looking for underlying meaning, and jotted down the thoughts and ideas that came to mind in the [same] margin. Read through several data as in step 2. Jot down the thoughts; a list of all the topics which comes to mind was made. Related topics were grouped together, and formed columns example, major, and unique topics, and (leftover). Step 3 Take the list of topics arranged go and back to data, topics were then abbreviated as codes and were written next to appropriate text. Look if new categories and codes emerge. Step 5 Find the most descriptive wording turn them into categories, group categories that relate to each other. Lines were drawn between categories to show their interrelationships. Step 6 Researcher and co-coder made a final decision on the abbreviation for each category and alphabetized codes. - Data material belonging to each category was assembled in one place and a preliminary analysis was done. A discussion between researcher and co-coder to agree on themes and sub themes Step8 If necessary, recode your existing data. Step 4 Step 1 Step 7 43 3.6 MEASURES TO ENSURE TRUSTWORTHINESS According to Polit, and Beck, (2012), trustworthiness refers to the degree of confidence qualitative researchers have in their data. To ensure trustworthiness in this qualitative research report, the model of Lincoln, and Guba (1985) was used. The model focuses on the following four constructs: Credibility Credibility relates to truth-value in which the goal will be to demonstrate that inquiry will be conducted in such a manner as to ensure that participants are accurately identified and described (de Vos et al. 2011). To ensure trustworthiness in this study: The research design and research methodology relevant to the purpose of the study were identified and described. Member checking through probing and follow up answers were done in order to clarify and verify whether the participant was correctly understood. Meeting was held with research supervisor and co-supervisor and findings of study were consolidated with those of the co-coder in order to ensure truth in research findings and consensus was reached. Dependability Dependability of qualitative data refers to the stability of data over time (Jooste 2010). Using an audit trail, decisions made within the research process to produce findings will be traceable to ensure dependability (consistency) of data. Lincoln and Guba (1985) argue that in practice, demonstration of credibility ensures dependability; it is therefore assumed that dependability in this study was also ensured by demonstrations of credibility above. Confirmability According to Brink (2009) confirmability guarantees that the findings, conclusions and recommendations are supported by data and that there is internal agreement between the investigator’s interpretation and the actual evidence. To ensure this construct, the researcher provided an audit trail, by keeping track of all references used. All electronically stored data and hard copies including consent forms signed by the participants and the tape recorder will be kept safely in a manner that ensures confidentiality. Transferability Transferability refers to the extent to which the findings of the research can be transferred from a specific situation to another or generalized to other settings, contexts, or 44 populations (de Vos et al 2011). Although the researcher did not intend to generalize the findings of this study, a thick description of the research context and research methodology was provided, in order to provide other researchers with sufficient information to assess applicability of the study in their own setting. Despite the smaller sample size, saturation of data was achieved indicating that the sample was adequate. 3.7 ETHICAL CONSIDERATIONS Permission to conduct the study was also obtained from the following authoritiesPost- Graduation Committee of the Faculty of Health Sciences of the University of Witwatersrand. Ethical clearance certificate M130734, was obtained from the university of Witwatersrand Medical Human Research Science Ethics committee. (Appendix F). The researcher wrote a letter to the Chief Executive Officer of the hospital where the study was conducted requesting permission to conduct the study (Appendix G). Permission to conduct the study was obtained from the North West health department and the Chief Executive Officer of the hospital where the study will be conducted. (Appendix H). Each participant was given an information letter detailing (Appendix B) Each participant signed a consent form agreeing to be interviewed participation for the study (Appendix C) Each participant signed a consent form agreeing to be recorded during the interview (Appendix D) The researcher upheld the principles of fundamental human rights throughout this research study as required by the Human Science Research Council (Brink, 2009). Informed consent According Polit and Beck (2012) informed consent means that the study participants have adequate information about the research, has comprehend that information and have the ability to consent or decline participation voluntarily. Before the interview, all participants received information letters (Appendix B) detailing the overall goals and plan of the study. Participants were informed that their participation in the study is voluntary. Participants 45 were also informed about their rights to withdraw from the study at any time, or refuse to answer any questions should they so desire without victimization. Written consent forms for voluntary participation (Appendix C) and agreeing for the use of tape recorder during the interview (Appendix D) were signed prior to data collection. Verbal consent was obtained to refer the patient for professional counselling by the hospital psychologist or social worker in case it was necessary. Anonymity Participants were reminded to guard against using any names during the recording of the interview that could be linked to any participant. Participants were referred to as participant number (N1, N2) and so on, when reporting the finding of the research study. Participants were also assured that should the results of the study be published it will be published anonymously, that readers will not be able to link study results to anyone who participated in the study. Protection from discomfort and harm Research participants have the right to be protected from discomfort and harm. In research according to Burns and Grove (2007), discomfort and harm can be physical, emotional, social, or economic or any combination of these four. In this study the participants were required to describe their feelings after finding out about their chronic renal disease, which could result in the resurfacing of the emotions experienced at the time. To ensure participant’s psychological wellbeing the hospital psychologist and social worker were informed about the research and the interview program and were requested to be on standby in case the researcher needed to refer participants. During each interview the researcher made sure that the participant was comfortable by asking if the participant was all right and whether the interview should continue or stop especially after the participant gave an emotional response. Again after each interview, participants were asked how they felt in order to assess if they needed to be referred for professional counselling. Confidentiality Confidentiality can be viewed as a continuation of privacy, which refers to the agreements between persons (in this case the researcher and participant) that limit others’ access to private information (de Vos et al. 2011). Participants were guaranteed confidentiality with regard to the information they disclosed to researcher. Information obtained during the 46 interview was not shared with anyone except the translator, the co-coder and research supervisors. The research supervisors are qualified professional nurses, nurse administrator and nurse educator registered with the South African Nursing Council and have pledged to confidentiality as per Nurse’s pledge of service. As experts in research the supervisors are conversant with ethical issues in research. Participants were also informed about the need for translation of tape recordings into English by someone not directly involved with this research. In order to ensure confidentiality, person who was utilized as the translator is a professional nurse who is familiar with ethics in research and is also committed to professional secrecy. Participants were also reassured that all electronically stored data and hard copies including consent forms signed by the participants and the tape recorder will be kept safely in the manner that ensures confidentiality and will be destroyed after five years following completion of the research report. 3.7.1. Gaining permission to conduct research The researcher complied with the research requirements of the University of Witwatersrand. The researcher presented a copy of the research proposal to the department of nursing committee for peer review. A copy of a research proposal was submitted and presented to the Post-Graduation Committee of the Faculty of Health Sciences of the University of Witwatersrand for approval. After approval was granted a copy of the proposal was submitted to the Medical Human Research Ethics Committee of the University of Witwatersrand, the study was approved and ethical clearance certificate was issued (Appendix F). A letter requesting permission to conduct the study was written to the North West Department of Health and the Chief Executive Officer of the institution where the study was conducted (Appendix G). A copy of the research proposal was also submitted to the Chief Executive Officer and to the North West Department of Health. Permission to conduct the study was received from the chief executive officer of the hospital (Appendix H) 47 3.8 SUMMARY This chapter presents the detailed description of the methodology of the study. The design, population and sample were outlined. Data collection and analysis have also been discussed, measures to ensure trustworthiness were described and ethical considerations explained. In the next chapter, chapter four, the findings and discussion of the study are presented. 48 CHAPTER FOUR FINDINGS AND DISCUSSION 4.1 INTRODUCTION This chapter presents the findings of the study. Themes and sub-themes that emerged during data analysis are presented and discussed. Discussion included in this chapter is supported with literature in order to make the findings more meaningful. The objectives the study were  To explore and describe the beliefs of patients with chronic kidney disease regarding kidney dysfunction.  To explore and describe their attitudes and beliefs towards the management of kidney dysfunction. 4.2 SOCIO-DEMOGRAPHIC DATA OF PARTICIPANTS To add richness to the context of this study it was important to provide the demographic profile of the sample summarized in Table 4.1 below. A total of nine participants, five males and four females were interviewed. The sample comprised of young adults mostly from the rural villages around Rustenburg. Of the nine participants four are unemployed, two have been granted social pension and three are still employed. All participants have been on dialysis treatment for more than six months. Table 4.1 Summary of the demographic data 1 Age in years Range between 26 - 50 Total = 9 2 Gender Males Females 5 4 3 Marital status Married Single 5 4 49 4 Religion Christians Other 9 0 5 Residence Village Township 8 1 6 Living arrangement Alone Spouse only Spouse and children Parents and siblings 0 0 5 4 Following a discussion between the researcher and the co-coders, an agreement was reached on the themes and sub-themes identified. Table 4.2 presents both the themes and sub-themes generated from data. Table 4.2 Themes and sub-themes Theme Sub-theme 4.2.1 Emotional response  Shock and disbelief  Disempowerment  Change in employment  Change in lifestyle  Knowledge adequacy  Relationships  Partner 50  Family  Renal team 4.2.2 Attitudes and Beliefs  Cultural influence arising from:  Peer and friends  Family members  Culture on compliance 4.3. THEMES Following coding of direct quotes from the participants themes and sub-themes were identified. Two major themes that were generated are: emotional response and attitudes and beliefs. 4.3.1 Theme 1: Emotional responses An emotion is an affective state of consciousness in which joy, sorrow, fear, hate or like is experienced as distinguished from cognitive state of consciousness (Dictionary.com 2015). Chronic kidney disease affects all aspects of the patients’ life, the physical, mental, social and financial status and can be very traumatic to the patients. According to Thomas (2008) patients with chronic kidney disease needing dialysis therapy may express series of mixed emotions ranging from denial, anger, sadness and depression. Sub-themes 4.3.1.1Shock and disbelief Loss of kidney function and dialysis therapy could be a frightening. Upon being told about their chronic kidney disease many participants expressed a series of mixed emotions as expressed by participants (N2, N6 and N7) below; “I was very hurt, because I knew that kidney illness was affecting elders, so that hurt me the most, asking myself where did I get it, because I didn’t even know about it, 51 doctor told me “you have kidney failure”, I did not understand what the doctor meant by that, yes [paused]”(N2) “I cried a lo