The Patients’ Rights Charter and patient centered care in a South African hospital Ipeleng Patience Nku WITS Business School Thesis presented in partial fulfilment for the degree of Master of Business Administration to the Faculty of Commerce, Law, and Management, University of the Witwatersrand August 2021 ii DECLARATION I Ipeleng Patience Nku declare that this research report entitled ‘The Patients’ Rights Charter and patient centered care in a South African hospital’ is my own unaided work. I have acknowledged, attributed, and referenced all ideas sourced elsewhere. I am hereby submitting it in partial fulfilment of the requirements of the degree of Master of Business Administration at the University of the Witwatersrand, Johannesburg. I have not submitted this report before for any other degree or examination to any other institution. Ipeleng Patience Nku Signed at Johannesburg on 29th August 2021 Name of candidate Ipeleng Patience Nku Student number 306444 Telephone numbers 073 879 2995 Email address Ipelengnku@gmail.com First year of registration 2020 Date of proposal submission 15 January 2021 Date of report submission 31 August 2021 Name of supervisors Samukelo Ngubane and Kambidima Wotela iii ABSTRACT Author: Ipeleng Patience Nku Supervisor Samukelo Ngubane Thesis title: The Patients’ Rights Charter and patient centered care in a South African hospital South Africa’s historical context has resulted in significant disparities and challenges in its healthcare sector. The national Patients’ Rights Charter was developed to counter these challenges by empowering patients and protecting their rights. Nevertheless, majority of patients attending hospitals remain unaware of their rights, and as a result face many frustrations associated with the quality of healthcare they receive. This research seeks to assess patients’ perceptions on the Patients’ Rights Charter and the influence that it has on the concept of patient centered care in a public South African hospital. Making use of three components of the Patients’ Rights Charter, namely confidentiality, informed consent and patient participation in decision making, the extent to which the rights are perceived by patients will be explored. The goal of this study is to assist hospitals in and around South Africa to improve patient centered care through use of the Patients’ Rights Charter. The study employed a quantitative research approach making use of fully structured questionnaires. With 200 participants observed from the medical and surgical out patients departments of the Tembisa Provincial Tertiary hospital, results revealed that 86% were aware that they have rights as patients, while only 31% were aware of existence of the Patients’ Rights Charter. Overall the research found that patient perceptions of the Patients’ Rights Charter were favourable. Correlation analysis revealed that all three constituents had a positive relationship with patient centered care, while multiple linear regression analysis found that only patient participation and informed consent directly influenced patient centered care. Thus laying focus on improving implementation of the Patients’ Rights Charter can aid hospital management in enhancing patient centered care. Such improvement in implementation would best be achieved through collaborative efforts of different systems and areas of the hospital. Key words: Patients’ Rights Charter, patient centered care, confidentiality, informed consent, participation in decision making. Johannesburg, August 2021 iv TABLE OF CONTENTS DECLARATION ....................................................................................................................................... ii Abstract iii Table of contents ....................................................................................................................................... iv List of tables vii List of figures viii ACKNOWLEDGEMENTS ................................................................................................................... ix Definition of key terms and concepts ..................................................................................................... x 1 Chapter One – Background and Introduction ............................................................................ 11 1.1 Background ................................................................................................................................ 11 1.1.1 The South African Healthcare Industry .................................................................. 11 1.1.2 Patient Centered Care (PCC) .................................................................................... 12 1.1.3 The Patient Rights Charter (PRC) ........................................................................... 12 1.2 Research Conceptualisation ..................................................................................................... 13 1.2.1 Research Problem Statement .................................................................................... 13 1.2.2 The Research Aims and Objectives ......................................................................... 14 1.2.3 The Research Questions and Hypotheses .............................................................. 15 1.3 Research Delimitations and Assumptions of the Research Study ..................................... 16 1.4 Research Significance ................................................................................................................ 16 1.5 Preface to the research report ................................................................................................. 17 2 Chapter two - Literature review ..................................................................................................... 18 2.1 Problem analysis ........................................................................................................................ 18 2.1.1 Societal Impact of Disease and Public Healthcare ................................................ 18 2.1.2 Patient Centered Care Defined ................................................................................ 19 2.1.3 Patient Rights Charter Defined ................................................................................ 20 2.1.4 Implementation of the PRC and PCC .................................................................... 21 2.1.5 Healthcare management ............................................................................................ 21 2.1.6 Institutional theory ..................................................................................................... 22 2.1.7 Implementation Theory ............................................................................................. 23 2.1.8 Systems Theory ........................................................................................................... 24 2.1.9 Overall Economic Impact on Healthcare Services ............................................... 24 2.2 Research knowledge gap analysis ............................................................................................ 25 2.3 Quantitative variables key to research .................................................................................... 27 2.3.1 Patient centered care .................................................................................................. 27 2.3.2 Confidentiality ............................................................................................................. 28 2.3.3 Informed Consent ...................................................................................................... 28 2.3.4 Patient Participation ................................................................................................... 28 2.4 Framework for interpreting research findings ...................................................................... 29 2.4.1. National Core Standards .......................................................................................... 29 3 Chapter Three - Research methodology ...................................................................................... 32 3.1 Introduction ............................................................................................................................... 32 3.2 Research Strategy ....................................................................................................................... 32 3.3 Research Design ........................................................................................................................ 32 3.4 Research Procedure and Methods .......................................................................................... 33 v 3.4.1 Research setting .......................................................................................................... 33 3.4.2 Research target population ........................................................................................ 34 3.4.3 Sample population ...................................................................................................... 34 3.4.4 Research data collection instrument ........................................................................ 34 3.4.5 Research ethical considerations ................................................................................ 35 3.4.6 Research Data collection process ............................................................................. 36 3.4.7 Research data processing and analysis ..................................................................... 36 3.5 Research Reliability and Validity ............................................................................................. 37 4 Chapter Four - Results .................................................................................................................... 38 4.1 Introduction ............................................................................................................................... 38 4.2. Patient Demographic Details .................................................................................................. 38 4.2.1 Age ................................................................................................................................ 38 4.2.2. Gender ......................................................................................................................... 39 4.2.3 Education level ............................................................................................................ 39 4.2.4 Employment status ..................................................................................................... 41 4.2.5 Place of residence ....................................................................................................... 42 4.2.6 Home language .......................................................................................................... 42 4.3 Research question 1: What are the perceptions of patient experiences on constituents of the national Patient Rights Charter (confidentiality, informed consent, patient participation)? ....................................................................................................................... 43 4.3.1 Patient rights ................................................................................................................ 43 4.3.2 Confidentiality ............................................................................................................. 46 4.3.2 Informed Consent ..................................................................................................... 49 4.3.4 Patient Participation ................................................................................................... 52 4.4 Research Question 2: What are the perceptions of patient experiences on Patient Centered Care? ...................................................................................................................... 55 4.4.1 Perception of patient centered care specific parameters ...................................... 55 4.5 Research Question 3: What is the relationship between the Patient Rights Charter (confidentiality, informed consent, patient participation) and Patient Centered Care? 57 4.5.1 Correlation Analysis ................................................................................................... 57 4.6 Research Question 4: Does the Patient Rights Charter (confidentiality, informed consent, patient participation) have an influence on patient centered care? .............. 58 4.6.1 Regression Analysis .................................................................................................... 58 5 Chapter Five - Discussion .............................................................................................................. 63 5.1 Introduction ............................................................................................................................... 63 5.2 Demographics ............................................................................................................................ 63 5.3 Research question 1 .................................................................................................................. 64 What are the perceptions of patients on the national Patient Rights Charter and its parameters (confidentiality, informed consent, patient participation)? ....................... 64 5.3.1 Patient rights ................................................................................................................ 64 5.3.2 Confidentiality ............................................................................................................. 64 5.3.3 Informed Consent ...................................................................................................... 65 5.3.4 Patient Participation ................................................................................................... 65 5.4 Research question 2 .................................................................................................................. 67 What are the perceptions of patients on Patient Centered Care? ............................................ 67 5.4.1 Patients Centered Care .............................................................................................. 67 vi 5.5 Research question 3 .................................................................................................................. 67 What is the relationship between the Patient Rights Charter (confidentiality, informed consent, patient participation) and Patient Centered Care? .......................................... 67 5.6 Research question 4 .................................................................................................................. 68 Does the Patient Rights Charter (confidentiality, informed consent, patient participation) have an influence patient centered care? .......................................................................... 68 6 Chapter six – Summary, conclusions, limitations and recommendations ............................... 71 6.1 Summary ..................................................................................................................................... 71 6.2 Conclusion .................................................................................................................................. 71 6.3 Limitations .................................................................................................................................. 72 6.4 Recommendations ..................................................................................................................... 72 References 74 Appendix 1: Consent form ...................................................................................................................... 82 Appendix 2: Research Instrument ....................................................................................................... 83 Appendix 3: Participation Information Sheet ...................................................................................... 88 Appendix 4: Ethics Documentation ..................................................................................................... 89 Appendix 5: Bio of Researcher .............................................................................................................. 90 Appendix 6: Permission Letter .............................................................................................................. 91 vii LIST OF TABLES Table 1: Percentage of Participant Age 38 Table 2: Percentage of Participant Gender 39 Table 3: Percentage Education Level of Participants 40 Table 4: Percentage of Participant Employment Status 41 Table 5: Percentage of Participant Place of Residence 42 Table 6: Percentage of Participant Home Language 42 Table 7: Awareness of patient rights 44 Table 8: Awareness of the patient rights charter 44 Table 9: Information Source for Patients’ Rights Charter 45 Table 10: Participant Awareness of Confidentiality 46 Table 11: Percentage Perception of Confidentiality Specific Parameters 48 Table 12: Awareness of Informed Consent 49 Table 13: Percentage Perception of Participant Informed Consent Specific Parameters51 Table 14: Awareness of Patient Participation 53 Table 15: Percentage Perception of Patient Participation Specific Parameters 53 Table 16: Percentage Perception of Patient Centered Care Parameters 55 Table 17: Correlation Analysis 57 Table 18: ANOVA 58 Table 19: Coefficients for MLR 59 Table 20: Collinearity diagnosticsa 60 Table 21: Model Summaryb 62 viii LIST OF FIGURES Figure 1: Participant Age Groups ............................................................................................ 38 Figure 2: Participant Gender .................................................................................................... 39 Figure 3: Participant Education Level ..................................................................................... 40 Figure 4: Employment Status of Participants ........................................................................ 41 Figure 5: Participant Place of Residence ................................................................................. 42 Figure 6: Participant Home Language .................................................................................... 43 Figure 7: Awareness of patient rights ...................................................................................... 44 Figure 8: Awareness of the patient rights charter ................................................................. 45 Figure 9: Information Source for Patients' Rights Charter .................................................. 45 Figure 10: Participant Awareness of Confidentiality ............................................................ 46 Figure 11: General understanding of Confidentiality ........................................................... 47 Figure 12: Awareness of Informed Consent .......................................................................... 49 Figure 13: General Understanding of Informed Consent ................................................... 50 Figure 14: Awareness of Patient Participation ....................................................................... 53 Figure 15: P-P Plot ..................................................................................................................... 60 Figure 16: Histogram ................................................................................................................. 61 Figure 17: Scatterplot ................................................................................................................. 61 ix ACKNOWLEDGEMENTS I would like to extend my utmost gratitude and thanks to the following people, of whom without this research would have not been possible: First and foremost, thank you to the study participants for dedicating their time towards the research, and to the hospital for granting me permission and access to collect my data. I would like to extend my greatest thanks to my supervisor Mr Samukelo Ngubane. Your support and guidance during this journey has been much appreciated. My husband Lesego Diale, I cannot begin to describe the amount of gratitude I have for you. You have been my pillar of strength, my constant structure of support and my continuous source of love and encouragement. Thank you for always seeing the best in me and constantly urging me to reach my full potential. My parents Boitumelo Nku and Michael Nku who begun this journey with me long before I even imagined reaching this point. You have endured so much to see me through the difficult times along this journey. Thank you for all your love, encouragement, patience and support. Mr Anesu Kudzwai my exceptional statistician, thank you for the statistical guidance throughout this journey. My precious daughter Kgatoentle Diale, this thesis my dear is dedicated to you. You put a smile on my face every day throughout my toughest days and made each hurdle worth overcoming. We journeyed through this together and for that I owe you many thanks for inadvertently carrying this weight with me. x DEFINITION OF KEY TERMS AND CONCEPTS Acronym Full description PRC Patients’ Rights Charter PCC Patient Centered Care NCS National Core Standards HPCSA Health Professions Council of South Africa EFA Exploratory Factor Analysis KMO Kaiser-Meyer-Olkin ICASA Independent Communications Authority of SA ANOVA Analysis of variance 11 1 CHAPTER ONE – BACKGROUND AND INTRODUCTION 1.1 Background This research seeks to assess the influence of the South African Patient Rights Charter (PRC) on the implementation of patient centered care (PCC) in a South African tertiary public healthcare facility. As the essence of patient centered care places patients at the centre of the health care system, healthcare organisations are increasingly focused on providing care which is patient-centered rather than disease-focused (Fix et al., 2018). As a result, public healthcare organisations are required to transform their culture of care and key managerial and organisational factors in a manner best suited for implementing patient centered care (Wolff & Jacobs, 2015). In this context, the primary role of the PRC is to promote and protect the rights of patients seeking proficient medical assistance, which must be provided economically and efficiently to provide citizens with the best possible value for money, in alignment with the principles of the PRC (The Department of Health, n.d.). As a result, this study will explore the extent to which attending patients recognise aspects of the PRC to evaluate their patient centered experiences in and around a South African public hospital. 1.1.1 The South African Healthcare Industry The apartheid era in South Africa has left a legacy of inequality and poverty, with the discriminatory customs of the period causing lingering challenges in many sectors including the healthcare industry (Ramoroka, 2019). South Africa continues to face significant disparities in several healthcare areas that challenge the healthcare industry and provision of PCC, which in turn bears significant weight on society and the economy as a whole (Ataguba et al., 2011). These disparities impinge on the social and economic fabric of society through increasing direct medical costs and indirect costs to the economy that result from inadequate rendering of healthcare services (Benatar, 2013). Although there are multiple factors owing to healthcare disparities in South Africa, differing management models between the private and public healthcare services appears to play a significant role (Stewart & Wolvaardt, 2019), with institutions in the public sector generally known to suffer poor management, underfunding and deteriorating infrastructure, negatively impacting the rendering of patient-centered care (World Health Organization, 2017). As a result, a dichotomy appears to exist between what is stipulated in the Patient Rights Charter and the lack of effective service delivery 12 in the public healthcare sector (Tzelepis et al., 2015). Reports and results of investigations into the public healthcare system often describe it as collapsing with these results showing that several public hospitals are in a state of crisis with much of the public health care infrastructure in poor condition and vast sections of which are non- operational as a result of underfunding, mismanagement and neglect (Maphumulo & Bhengu, 2019). 1.1.2 Patient Centered Care (PCC) Patient centered care is a critical aspect of health services, it represents a foundational shift from the traditional, provider-driven, disease-focused medical approach towards healthcare systems that ensure patients (along with their preferences, needs, desires and experiences) are fully integrated into every phase of health care services, including consultation, treatment and follow-up (Stewart & Wolvaardt, 2019). PCC is regarded as the foundational determinant of healthcare management and provision (Berghout et al., 2015). Therefore, all healthcare systems globally including South Africa, are designed to be centered around a proficient patient-healthcare worker relationship, in which it is imperative that concise attention be paid to patient interactions with healthcare providers (Jardien-Baboo et al., 2016). As a result, healthcare institutions are required to implement the necessary organisational changes required to transform from a traditionally provider-centric care system towards systems where patient preferences drive care and sustain the culture of PCC (Berghout et al., 2015). In contrast, research shows that patient experiences at public healthcare institutions in South Africa are often coupled with frustrations that occur as a direct result of the daily management challenges (Haskins et al., 2014). Facing staff shortages and overcrowding, healthcare providers often have great difficulty providing PCC which inadvertently leads to the negative experiences and frustrations faced by patients (Maphumulo & Bhengu, 2019). These experiences generally stem from poor management or implementation of the Patient Rights Charter (a fundamental constituent of PCC) that leaves patients with a lack of understanding regarding issues pivotal to PCC, such as confidentiality, informed consent and decision making (Effects of Poor Communication in Healthcare, n.d.). 1.1.3 The Patient Rights Charter (PRC) In consultation with the Health Professions Council of South Africa (HPCSA) and several other bodies, the South African Department of Health established the national 13 Patients’ Rights Charter to ensure the right to healthcare access as per the Constitution (Department of Health, n.d.). In this context, the concept of patient-centered care is endorsed in the Constitution of South Africa Second Amendment Act, no. 3 of 2003, where it is stated that all citizens have the right to health care that is caring, free from harm and as effective as possible with value for money (South Africa et al., 2015). This was done in response to the violation of basic human rights experienced by healthcare seekers making use of public health facilities during and post-apartheid (The Department of Health, n.d.): “The department of health is committed to upholding, promoting and protecting this right and therefore proclaims the Patients’ Rights Charter as a common standard for achieving the realisation of this right” (The Department of Health, n.d., p. 1). The charter aims to promote deliverance of quality healthcare in South Africa’s state hospitals by empowering patients and promoting ethical practices and equality within the sector (Health Professions Council Of South Africa, 2008). As a result, the Patients’ Rights Charter paves way to establishing and sustaining patient centered care as its principles seek to introduce a new approach to service delivery that puts people first, and encapsulates the stated values of public service in South Africa, which directly relate to the concept of patient-centered care (Batho Pele White Paper, 1997). With successful implementation of the Patients’ Rights Charter the intended outcomes are that patient autonomy is recognized, collaboration between patients and their healthcare workers is enhanced, patient treatment plans are improved and patient complaints and litigations are reduced, thus leading to overall improvement of healthcare services along with the positive impact thereof for organisational functions in public healthcare institutions and the economy as whole (Njuguna et al., 2019). 1.2 Research Conceptualisation 1.2.1 Research Problem Statement Statista (2020) revealed that the national public healthcare sector remains the sole provider of health care for approximately 84% of the national population, thus it appears the majority of South Africans continue to receive inadequate health services that are largely lacking the foundation of patient centered care. Nkrumah and Abekah- Nkrumah (2019) corroborated this concept and established that the underlying barriers to patient centered care typically include resource constraints, resistance to change, poor staff commitment and unsupported policies, which are factors that appear to be pertinent to the South African context. This is supported by Lloyd et al. (2018) who 14 found that over and above the limited physical resources, staff shortage and poorly trained staff, management’s role in policy implementation is a key barrier to the implementation of patient centered care. Therefore, it appears healthcare management and service delivery in the public sector may not be executed in accordance with the principles espoused within the Patient Rights Charter (Tzelepis et al., 2015). As a result, the mission to transform healthcare to provide patient-centered care through the Patient Rights Charter, may fall short of its intended outcomes and instead appears to pose a heavy burden on patients and healthcare providers related to adverse outcomes both for the populace and overall economic development (Malakoane et al., 2020) . Parsapoor et al. (2014) concurs that implementation of the Patient Rights Charter remains a serious challenge for the healthcare system. As the ultimate goal of the Patient Rights Charter is to strengthen the patient centered approach in health service management (Cohen & Ezer, 2013), rendering health care in the face of such challenges thus leads to the question of the extent to which patients are receiving patient-centered care in public hospitals. In this instance, the role of the patient is regarded as pivotal with a view to assessing outcomes in gauging understanding of patient centered care through the Patient Rights Charter (Cohen & Ezer, 2013). 1.2.2 The Research Aims and Objectives In light of the research problem stated above, the purpose of this study is to assess the extent to which the Patients’ Rights Charter has influence on patient centered care in patients attending a South African public hospital. The intention of the study is to assist public healthcare institutions in enforcing implementation of the Patients’ Rights Charter and policies relating to patient centered care, in an attempt to enhance the quality of healthcare services provided. The research will look at the perceptions that patients have on constituents of the Patients’ Rights Charter, namely confidentiality, informed consent and patient participation as well as their perceptions on the concept of patient cantered care. In addition, the study will seek to explore if a relationship exists between the Patients’ Rights Charter constituents (confidentiality, informed consent, patient participation) and patient centered care and if so, do theses constituents of the Patients’ Rights Charter influence patient centered care in any way. 15 1.2.3 The Research Questions and Hypotheses 1.2.3.1 Question 1: What are the perceptions of patient experiences on constituents of the national Patient Rights Charter (confidentiality, informed consent, patient participation)? H0: The perceptions of patient experiences on the PRC (confidentiality, informed consent, patient participation) are favourable. H1: The perceptions of patient experiences on the PRC (confidentiality, informed consent, patient participation) are less than favourable. 1.2.3.2 Question 2: What are the perceptions of patient experiences on Patient Centered Care? H0: The perceptions of patient experiences on Patient Centered Care are favourable. H1: The perceptions of patient experiences on Patient Centered Care are less than favourable. 1.2.3.3 Question 3: What is the relationship between the Patient Rights Charter (confidentiality, informed consent, patient participation) and Patient Centered Care? H0: There is no relationship between the Patients’ Rights Charter (confidentiality, informed consent, patient participation) and patient centered care. H1: There is a relationship between the Patients’ Rights Charter (confidentiality, informed consent, patient participation) and patient centered care. 1.2.3.4 Question 4: Does the Patient Rights Charter (confidentiality, informed consent, patient participation) have an influence on patient centered care? H0: The Patients’ Rights Charter (confidentiality, informed consent, patient participation) does not have a significant influence on patient centered care. H1: The Patients’ Rights Charter (confidentiality, informed consent, patient participation) has a significant influence on patient centered care. 16 1.3 Research Delimitations and Assumptions of the Research Study Due to the scope of the study, the research only included one public hospital in the Gauteng Province of South Africa. Thus, research results cannot be generalised across all public hospitals. Further information could possibly have been obtained if a wider research population had been involved in the study. Patient-centered care is a complex, multifaceted and long-term endeavour which occurs at multiple levels of the healthcare organisation. In this regard, assessment of all the relevant aspects was beyond the scope of the current study due to the diverse and broad nature. As a result, the scope of the study only allowed for particular aspects of patient centered care to be assessed. The study therefore focused solely on the challenges of incorporating patient-centered approaches through the Patient Rights Charter in the context of regulations concerning best practice for healthcare services. This was done using the fundamentals which underlie patient centered care in healthcare services, in particular confidentiality, informed consent and patient participation in decision making. The study assumes participants provided truthful responses throughout. Discussed in more detail, the process and steps undertaken to ensure anonymity can be found in chapter three (methodology), serving the purpose of ensuring participant truthfulness is maximized. Making use of Linkert scale items to assess the perceptions that participants have on constituents of the PRC and PCC, the research assumed that the scale intensity of the attitudes was linear. 1.4 Research Significance A consequence of poor patient centered care is the prolongation of patient disease and suffering, which ultimately bears long term economic and healthcare implications for the patient and the organisation (Dhai, 2015). Some direct and indirect implications of prolonged disease and dissatisfactory healthcare services have been described by World Health Organisation (2018) are as follows: - Poor health outcomes contributing to individual and community suffering and the spreading of communicable disease, which in turn increases the burden on the public healthcare institution. - Poor physical health leading to mental and emotional strain on patients. 17 - Dissatisfaction of patients resulting in litigations against the healthcare institution and its employees. - Increased healthcare costs due to prolonged disease. - Poor health outcomes resulting in reduced contribution to one’s employment with further implications to the economy entirely. - Poor health outcomes increasing access to social welfare and impacting the economy as a whole. It is anticipated that the results of the study may assist in further evaluating outcomes of the Patient Rights Charter on patient centered care. This will in turn assist the hospital and possibly similar healthcare institutions to determine whether implementation of the Patient Rights Charter is an effective policy in terms of providing patient centered care and improving overall healthcare service delivery. 1.5 Preface to the research report To this end, this research report consists of six chapters. Following this introductory chapter, chapter two will outline the literature review that covers the problem at hand, past studies relating to the research and the interpretive and conceptual frameworks. Chapter three will then discuss the research strategy, design, procedure & methods, reliability & validity measures as well as limitations. Chapter four and chapter five will present the research results and discussion findings respectively, while chapter six will deliver the summary, conclusions, and recommendations of the research. 18 2 CHAPTER TWO - LITERATURE REVIEW This chapter explores literature relevant to the research to facilitate understanding of the problem and identify the knowledge gap. It explores literature from South Africa as well as other countries facing similar challenges and provides a theoretical framework for interpreting the research findings and identifying attributes that are key to the research. 2.1 Problem analysis 2.1.1 Societal Impact of Disease and Public Healthcare While South Africa holds just over 58 million inhabitants, only 16.4% of its population is covered by medical aid schemes and makes use of private healthcare (Statista, 2020; Stats Sa, n.d.). Bradshaw (2019) predicts that the number of people that require health care is projected to increase in South Africa as a result of rising life expectancies, expanding HIV treatment, and a rapid increase of economy impacting diseases such as cardiovascular disease, diabetes and tuberculosis. He further adds that this burden is set to result in significant economic loss through mortality, treatment costs and effects on productivity (Bradshaw et al., 2019). This trend is prospectively expected to continue and has been compounded by the ongoing global Covid 19 pandemic, which is challenging healthcare service systems and organisations (Pillay et al., 2021). This shift in the burden of disease creates a need for people with multiple comorbidities to seek multiple medical consultations resulting in increasing healthcare costs across the public healthcare sector (Mbunge, 2020). In addition, South Africa is increasingly seeing the simultaneous coalescing of chronic diseases such as HIV with diabetes, which has resulted in an augmented burden on the healthcare system (Batho Pele White Paper, 1997). The ongoing impact of South Africa’s burden of disease requires patients to attend regular clinic and hospital appointments, adhere to ongoing diagnostic and therapeutic tests, remain compliant on chronic medications, and maintain an overall healthy lifestyle that includes healthy meals, self-care and taking responsibility of one’s own health (Wolff & Jacobs, 2015). In order to assist patients to improve their health outcomes, healthcare systems are adopting patient-centered practices which aim to deliver quality care and value for money, while acknowledging the responsibilities that fall upon the patient (Adams, 2010). With the public healthcare system bearing much of this 19 healthcare burden, state hospitals face challenges that render them unable to accommodate and provide patients with the quality of care as required by South Africa’s healthcare standards (Department of Health, 2011) . Maphumulo and Bhengu (2019) found that the underperformance within these facilities can be linked to inadequately trained staff, erratic supply of medication, frequent lack of stock, poor allocation of resources and a lack of essential equipment. In addition they state that staff shortages significantly hinder the ability of public hospitals to develop relationships with patients, which inevitably hampers the long term care required for the effective treatment of chronic diseases (Maphumulo & Bhengu, 2019). Thus, a need exists to improve the patient’s public healthcare experience, reduce the cost of care and improve the patient-provider relationship (Adams, 2010). In support of this concept, Richards and Wicks (2015) successfully demonstrated the effectiveness of PCC innovations in improving patient experiences, trust, care, quality, chronic disease management and outcomes. 2.1.2 Patient Centered Care Defined Patient centered care is defined as “care that is respectful of, and responsive to individual patient preferences, needs and values, and ensures that patient values guide all clinical decisions” (Wolff & Jacobs, 2015, p. 79). It therefore broadens the conventional medical approach to include the patient as an active participant in care. It is built around the needs of the individual and is contingent upon the interpersonal relationship between patient and health service provider (Mapes et al., 2019). According to De Man et al. (2016) patient centered care assists patients to become active participants in their own healthcare, which is essential to the delivery of effective medical care systems. As a result, patients are also required to understand their role as partners in their own care and be willing to collaborate with healthcare providers to improve their self-care experiences and concerns (De Man et al., 2016). To this end, as part of the movement towards patient-centered care, several countries have adopted charters of rights for patients, and South Africa is no exception, having formulated the National Patient Rights Charter to ensure the realisation of the right to 20 access healthcare services as per the Constitution (Act No 108 0f 1996) of South Africa (South Africa et al., 2015). 2.1.3 Patient Rights Charter Defined According to The Department of Health (n.d.) the Patient Rights Charter typically includes rights that already exist in law, as well as a variety of statutes that are applicable to the rendering of healthcare services. Three distinct sources of legal and ethical principles inform the Patient Rights Charter, these are the Constitution (and all statutes and regulations stemming from it that embody its principles), medical case law and the Health Professions Council of South Africa (HPCSA) (South Africa et al., 2015). The HPCSA is mandated to set and maintain healthcare standards, with the primary role of protecting the public and guiding the profession, it is guided by a formal regulatory framework that includes the Health Professions Act 56 of 1974 (HPCSA, n.d.) Every institution which provides healthcare services is required to operate in a manner compliant with regulations and requirements as set out by the HPCSA (HPCSA, n.d.). The ‘Batho Pele’ principles translating to ‘people first’ are principles developed in line with the PRC to transform public service delivery in South Africa (Batho Pele White Paper, 1997). These principles align with the Constitution (Act No 108 0f 1996) of South Africa in that they seek to respond to people’s needs, thus all healthcare conduct must support and reflect its values and aims. Under the Constitution, all citizens enjoy certain rights, and healthcare organisations have the responsibility to ensure those rights are respected. In addition to these rights, patients also have responsibilities which are also set out in the PRC. These rights and responsibilities are presented below (The Department of Health, n.d.) . The patient rights as presented in the PRC include: A healthy and safe environment; Participation in decision-making; Access to health care services which includes receiving timely emergency care and being treated patient with dignity and respect; Knowledge of one’s health; Information and freedom to utilize medical insurance; Choice of healthcare services; Treated by a named healthcare provider; Confidentiality and privacy; Informed consent; Right to refusal of treatment; Right to referral for a second opinion; Continuity of care; Complain about health services. 21 Patient responsibilities as presented in the PRC include: Taking care of the records in their possession; Taking care of one’s health ; Not abusing the healthcare system; Providing healthcare providers with relevant and accurate information for diagnostic, treatment, rehabilitation or counselling purposes; Advising healthcare providers of their wishes in treatment and in the event of death; Complying with treatment; Enquiring about healthcare related costs; Caring for and protecting the environment; Respecting the rights of other patients and healthcare providers; Knowing your local healthcare services and what they provide 2.1.4 Implementation of the PRC and PCC Implementing a patient centered model of care which embraces the rights and principles set forth in the PRC has profound implications for the way health services are managed, planned, delivered, and evaluated. Four main components are considered essential in the performance of PCC (Fix et al., 2018), these components are: The professional skills of healthcare providers (relating to the training and development of healthcare professionals); The care environment and whether this is conducive for PCC (relating to the environment being conducive for privacy and confidentiality); The person-centered processes (relating to effective communication pertaining issues such as obtaining informed consent); The expected outcome (being measured from the patients perspective and not particularly the therapeutic outcome as perceived by the health professional). At the heart of these components and their implementation are health care management and leadership, defined as the ability to inspire individual and organisational excellence in healthcare service delivery, to create a shared vision and successfully manage change to attain strategic health service goals and successful outcomes (National Health Act, 2003). Healthcare management and leadership is the driving force behind decision making and communication and is responsible for guiding the vision of a healthcare organisation (National Health Act, 2003). Thus, it forms a critical aspect in any change initiative toward patient centered care. 2.1.5 Healthcare management Maphumulo and Bhengu (2019) state that public hospital management is in crisis. The national policy on healthcare management identified the challenges that hamper the 22 delivery of effective and efficient healthcare services, these stem from the lack of appropriate legislation and policies. While in other cases the challenges related to capacity constraints, such as the competency levels of hospital CEOs, lack of proper training, lack of strategic support, and lacking the capacity to deal with small operational issues (National Health Act, 2003). This national policy on management of hospitals was thus derived to ensure that the management of hospitals is underpinned by principles of effectiveness, efficiency and transparency (National Health Act 2003). The objectives set out in this policy specifically for management teams are as follows: - Promoting applicable legislations and policies to improve hospital functions - Ensuring the appointment of highly skilled managers - To move towards decentralisation of management - To develop frameworks that promote accountability - To provide the training and development of managers in leadership, management and governance 2.1.6 Institutional theory As described by Greve and Argote (2015) “ The institutional theory focuses on the roles of social, political and economic systems in which companies operate and gain legitimacy”(Greve & Argote, 2015, p. 3). This theory within the management context describes how the institution provides the ‘rules of the game’ and defines the available ways to work by encouraging or discouraging given behavioural patterns (Debroux, 2010). While the hospital is an entity on its own with its own structures and policies, it cannot operate much of its desired functions solely without the intervention of The Department of health. The Department of Health provides policies and regulations to the institution in an attempt to manage the different operational functions effectively. These inherited policies and guidelines were developed to serve all healthcare institutions, based on research of a broad nature rather than from a focus on an individual institution (Debroux, 2010). This is turn bears significance with regards to how effective and efficient these policies will be in individualized institutions. This thought is further refined by Zucker (1987) who mentions that organisations are generally influenced by normative pressures, that occasionally arise from external sources such as the state, whose involvement is of a broad nature. Zucker (1987) further goes to state that often times these pressures can also arise from the organisation itself. To counter these pressures, public healthcare institutions make use of committees and 23 general audits whose role is to ensure that the incorporated policies and regulations are being implemented efficiently and effectively (Zadeh et al., 2016). 2.1.7 Implementation Theory A series of constructs within five structural areas interact to influence implementation, these include intervention characteristics, inner setting and outer setting of the organisation, individual characteristics, and the process to be implemented. The five structural areas also include pertinent factors such as strength of evidence for the implementation (linked to knowledge about what is being implemented), implementation fit within the organisation’s practices (adaptability), organisational readiness to implement the change (priority, climate, training), role of leadership (engagement, management and resource allocation) and engagement of staff (Schein, 1992). The implementation theory provides a conceptual framework for understanding how healthcare leadership can typically implement PCC and PRC practices as ‘implementation’ describes the aggregation of processes needed to get an intervention into use within an organisation on a daily basis (Sinclair, 2001). It is a social process defined by the context in which it takes place and requires engagement of all the team members who are involved in the process, alongside a leadership strategy to accomplish the intended outcome (Sinclair, 2001). In addition, implementation requires creation of structures within the organisation that will facilitate the process (Schein, 1992). Asumeng and Osae-Larbi (2015) describe the implementation of organisational change in healthcare organisations in terms of bridging (integration of different facets of the organisation), redesigning (integration among professionals) and engaging (directing and leading behaviours towards the core values and goals) the relevant tools and frameworks. The Department of Health (n.d.) developed the National Core Standards (NCS) in line with the Office of Occupational Health Standards as a tool to guide healthcare institutions with the implementation of different domains within the organisation. This NCS framework is discussed further in section 2.4 as the interpretive framework. 24 2.1.8 Systems Theory The systems management theory proposes that an organisation consists of multiple components that work together for the greater outcome. The theory emphasizes the concept of collaboration of all the functions of the organisation (Chikere & Nwoka, 2015). The key elements pertinent to the success of the organisation are Synergy, interdependence and the interrelations between various subsystems. Furthermore, the theory describes how that over and above employees, other crucial elements in the organisation include departments, workgroups and business units (Kessler, 2013). 2.1.9 Overall Economic Impact on Healthcare Services In addition to facing a civil claim in negligence, healthcare service providers or organisations whose practice falls short of acceptable standards may face disciplinary action by the Health Professions Council with possible suspension of duties or revoking of a medical licence entirely (Department of health, n.d). The number and value of clinical negligence claims brought in South Africa has been rising rapidly in recent years, which has had drastic financial implications on the public healthcare sector (Dhai, 2015). A large number of these litigations result from dissatisfaction with services and interactions with public healthcare institutions (Pienaar, 2016). Raveesh et al. (2016) found that some of the common grounds for majority of South African medico legal challenges are: healthcare workers avoid showing compassion, failure to communicate clearly and effectively, and insufficient information provided for patient follow ups, all of which pertain to patient centered care (Raveesh et al., 2016). Although it is the duty of the attending healthcare worker to assure dignified efficient care of high quality is delivered to a patient, the institution bears the weight of responsibility for the overall operations and can therefore be held responsible and bear direct liability for failing to provide a safe environment that can provide quality treatment (Raveesh et al., 2016). As a consequence, these litigations come attached with significant cost implications for public healthcare institutions, which is transferred to the state thus resulting in dire economic drawbacks. Zikali (2019) estimated that the medico-legal claims in 2019 amounted to at least R20 billion for South African state hospitals. In addition, the World Health Organization (2017) mentioned that the long- standing consequences of poor delivery of patient centered care incur additional 25 healthcare expenditures for both the patient and the state. This is over and above poor health outcomes whose long-term implications (and associated cost) can result in ongoing economic impact disease, disability and in most cases death. The report states that the economic costs attached to health outcomes resulting from poor quality of care, is said to amount to trillions of dollars yearly at an international level (World Health Organization, 2017). The PRC affords the opportunity for communication between patient and provider so any areas of concern can be clarified in advance, thus circumventing the prospect of litigation entirely (Pienaar, 2016). In this context what a PRC is intended to add is a catalyst through which to resolve individual patient concerns quickly and economically. It details expectations for how a patient experiences care within the present offerings of the health care system, known as rights “in” healthcare (Pienaar, 2016). 2.2 Research knowledge gap analysis With the intention of adding significant value to the existing body of knowledge, this section focuses on existing literature to explore similar studies, methods, procedures, findings and conclusions in Sub Saharan Africa and similar countries in order to contextualise the South African scenario and the current study. A critical analysis conducted by Nevhutalu (2016) following an ethics audit at the Chris Hani Baragwanath Academic Hospital in South Africa, revealed no correlation exits between the theory and the practice of the Patient Rights Charter. The study explores various case reports that highlight various violations of patient rights at the Chris Hani Baragwanath Academic Hospital, emphasizing poor implementation of the Patient Rights Charter. The results of this study are especially significant as the hospital is one of the prominent tertiary training institutions for healthcare services in South Africa and is thus reasonably expected to create appropriate benchmarks for provision of services in line with PCC and PRC (Nevhutalu, 2016). Njuguna et al. (2019) looked at the influence of the Patients’ Rights Charter on health systems responsiveness in Kenya. Making use of a cross sectional descriptive study, qualitative data was obtained from healthcare workers using questionnaires. The study found that “the awareness and knowledge of the Patients’ Rights Charter was significant 26 and had an influence on the responsiveness of health systems”(Njuguna et al., 2019, p. 4663). As successful implementation of the Patients’ Rights Charter relies on both the patient and healthcare provider, the current study in contrast to Njuguna et al. (2019) focuses solely on the patient perspective. Dadashi et al. (2019); Mastaneh and Mouseli (2013); Razavi et al. (2006) all looked at awareness of Patient Rights Charters in various regions in Iran among patients and healthcare workers, and came to the conclusion that awareness and practicing of patient rights is limited and in need of intervention. Agrawal et al. (2017) also focusing on patient awareness in Egypt came to the conclusion that patient rights awareness was low among patients, families and healthcare workers, with much needed attention to educating healthcare workers on the contents and importance of the Patient Rights Charter. Furthermore a recommendation was made of forming a committee to monitor appropriate implementation of the Patient Rights Charter (Agrawal et al., 2017). These challenges are not uncommon in other African hospitals. Kagoya et al. (2013) focusing on patient rights practice and awareness in a national hospital in Uganda found that over 80% of patients and healthcare providers had never heard of a Patient Rights Charter, although awareness was higher amongst the healthcare providers. Zeina et al. (2013) looked at the manner in which patient rights are perceived and exercised in Egypt among patients, their companions and staff members. While three quarters of the patients were not familiar with existence of a Patient Rights Charter, about half of the healthcare workers were also unaware of it. Majority of the respondents reported having learnt of the charter through mass media, followed by posters displayed on the hospital walls (Zeina et al., 2013). A vast amount of research looking at patient rights has focused on awareness among patients and healthcare workers. Although this is of vital importance to the fundamental concept of the charter, it is equally as important to establish if the charter has effectively influence desired outcomes (Fix et al., 2018). Whilst it is noted that the charter components have positive effects on health outcomes in general, there is not much evidence to suggest that these outcomes are specifically of a patient centric nature (De Man et al., 2016). Together with all the research conducted in third world countries similar to South Africa, Nevhutalu (2016) added knowledge specific to South Africa on 27 the importance of patient awareness of the Patient Rights Charter. As a result, it has become evident that the relationship and influence of the Patients’ Rights Charter on patient centered care is of utmost importance and thus there is room for research to establish this influence. 2.3 Quantitative variables key to research Strategies for the clinical delivery of PCC include the incorporation of knowledge of the patient history, the conduct of consultation sessions, providing validation, prioritizing well-being ahead of routines and care tasks, simplifying and personalizing the environment and performing activities that promote well-being and comfort. Consequently, these strategies which are central to the concept of patient centered care and most representative of the patient-doctor relationship are confidentiality, informed consent and patient participation which form part of patient rights in the PRC and have been used as the key independent variables for the research. 2.3.1 Patient centered care PCC consists of five key dimensions (Mead & Bower, 2000), these dimensions have been describes as follows: i) Patient as a person - describes the physician getting to know the patient in a comprehensive manner. This begins by the physician conducting a full patient history, making sure to listen carefully to all the aspects of the patient history (includes main complaint, medical and surgical history, social history), followed by appropriate examination and assessment in a private setting. ii) Bio psychosocial perspective - relates to the physician getting to know all the aspects pertaining to the patient, including their biological, psychological and social issues. iii) Sharing power and responsibility - relates to patient autonomy, requiring that the physician respects the patient’s autonomy and affords them the opportunity to be involved in the decision-making process. iv) Therapeutic alliance - describes the partnership formed between the physician and the patient that works to benefit the patient. v) Physician as a person - relates to active self-awareness and self-control of the physician as all emotion and biases displayed by the physician play a role in the recovery journey of the patient. 28 2.3.2 Confidentiality In healthcare services confidentiality is defined as “the law whereby a doctor or medical practitioner cannot reveal anything said to them by their patients during consultation or treatment” (Dyban, 2015). It is thought to be a key feature of patient centered care and ethical medical practice and is understood to be guaranteed in order for patients to trust in the interaction with the healthcare provider (Jones, 2003). Failure to guarantee confidentiality can result in legal implications, inaccurate diagnosis and poor health outcomes (Jones, 2003). Merideth (2007) describes five legally accepted parameters that are recognized as an exception to a physician fulfilling the duty of confidentiality as follows: 1. Confidential information may be released if given consent to do so by the patient. 2. A physician may release confidential information if granted a court order to do so. 3. Confidential information may be released in order to assist a patient with continuing their treatment. 4. Confidential information may be released in order to comply with the law. 5. The clinician has a duty to protect people facing danger, and when faced with such a situation they may release confidential information. 2.3.3 Informed Consent Informed consent is defined as “the process in which a health care provider educates a patient about the risks, benefits, and alternatives of a given procedure or intervention” (Shah et al., 2020). In order to fully comply with the concept of informed consent, its legal, ethical and administrative standards are to be fulfilled (Hall et al., 2012). The factors described in the acquiring of informed consent are: patient comprehension, patients’ use of disclosed information, patient autonomy, demands on providers and physicians meeting of standards (Hall et al., 2012), all of which form fundamental components of patient centered care. 2.3.4 Patient Participation Patient Participation is described as “the involvement of the patient in decision making or expressing opinions about different treatment methods, which includes sharing information, feelings and signs and accepting health team instructions” (Vahdat et al., 2014). The encouragement of participation of patients in their healthcare has been shown to result in better outcomes, in addition to improved voluntary active 29 participation which is key to patient centered care and resulting long term health maintenance (Vahdat et al., 2014). The key factors that influence patient participation in the decision-making process are described as follows: - Patient related factors: demographics; personal characteristics; cultural knowledge; beliefs/ values; knowledge - Diseases related factors: symptoms; stage; illness severity; health outcomes; health expectations - Healthcare worker related factors: interpersonal communication skills; beliefs; values; knowledge - Healthcare setting factors: -cultural appropriateness; competency of the system; location; type of institution - Health provider task factors: cultural appropriateness; competence; behaviours 2.4 Framework for interpreting research findings 2.4.1. National Core Standards The efforts being pursued by the PRC to improve on the quality of health care services is proving to have many difficulties. In order to strengthen these efforts, the National Core Standards (NCS) were established by the Department of health. The primary objectives of the NCS are to develop criteria and indicators for the assessment of health establishments; to set a benchmark of standards for health establishments; and to establish a baseline for hospitals and communities to inform their development (Department of Health, 2011). The NCS tool is structured into seven domains. Each domain has sub-domains, within which are a set of standards. Each standard has a number of criteria that are achievable and measurable as per a provided description. The first three domains are directly involved with the core business of the health system of delivering health care to patients and relate specifically to patient rights, safety, clinical governance, clinical care, and clinical support services. The remaining domains form the support structures which ensure the system can deliver its core business, these include public health, leadership and corporate governance, operational management, facilities and infrastructure (Department of Health, 2011). 30 The tool is intended as a quality assurance mechanism that sets the benchmark against which delivery of healthcare services in health care organisations can be monitored by the Office of Health Standards Compliance (OHSC). It describes what is mandatory for implementation in all health establishments in South Africa to obtain national accreditation and certification of compliance in terms of mandated standards. The standards also provide details to managers of health organisations about what the definition of ‘adequate’ service delivery means in practical terms. In addition, it provides a means of measuring performance and success of implementation. As a result, healthcare managers in South Africa are significantly and continuously engaged with the NCS (Department of Health, 2011). When a healthcare facility generates an inspection report that shows non-compliance (score less than 50% on an NCS rating scale), the facility leadership is issued with a non- compliance notice attached to the inspection report, along with a quality improvement (QIP) template. The facility leadership is then required to implement the QIP template (with relevant support) to correct areas of non-compliance, followed by facility self- assessment within a stipulated time period for rectification. A follow-up re-inspection of implementation and compliance is then verified by the OHSC. Should the follow up inspection reveal persistent noncompliance, further action for enforcement or shut down may occur in terms of the National Health Amendment Act 12 of 2013. The NCS tool acknowledges that staff are key in achieving the core business of the healthcare system and in this regard, internal members (health care providers) play a pivotal role in enforcing the standards (Department of Health, 2011). It is a requirement for all health facilities to achieve a pre-determined level of compliance with the NCS tool in order to permit and maintain healthcare operations. This is enforced and monitored via internal self-assessment audits and external audits conducted by a quality assurance sub-directorate of the OHSC & quality assurance managers at the various levels and districts (Department of Health, 2011). The internal assessments done to assess the Patient’s Rights Domain of the NCS makes use of multiple tools to assess the different patient rights. Reports and patient files are analysed, internal audits are conducted, and interviews are conducted with patients and healthcare workers. Pertaining to the three patient rights studied in this research, namely 31 confidentiality, informed consent and patient participation, the most appropriate tool is that of interviews. Following the use of the mentioned tools, the organisation is then rated based on the results obtained. This rating consists of four categories that correspond with the type of intervention required in connection with the results. These categories are as follows: extreme (X); vital (V): essential (E); developmental (D). Institutional interventions are made accordingly based on the overall outcome of each component (Department of Health, 2011). 32 3 CHAPTER THREE - RESEARCH METHODOLOGY 3.1 Introduction This chapter identifies and describes the research methodology in terms of approach, design, procedure and methods. It also introduces the procedure employed to collect, process and analyse relevant data. Reliability and validity measures applied as well as the ethical considerations are also described in this chapter. 3.2 Research Strategy Saunders et al. (2006) define the research strategy as the general plan of how the researcher will go about answering the research questions. The three general strategies one can employ when undertaking research are quantitative, qualitative, and the mixed approach which makes use of both quantitative and qualitative research approaches. In order to fulfil the research questions and objectives posed in chapter one, this investigation made use of a quantitative research approach. Creswell and Creswell (2018) define the quantitative research approach as follows: “Quantitative research is an approach for testing objective theories by examining the relationship among variables. These variables, in turn, can be measured, typically on instruments, so that numbered data can be analysed using statistical procedures” (Creswell & Creswell, 2018, p. 32). This approach was deemed appropriate as this research seeks to ultimately identify and assess if there is a significant relationship between the PRC constituents and PCC in the hospital setting. In this context, fully structured questionnaires including Linkert scale type questions and closed ended questions were appropriately used to fulfil the research purpose. The use of these questions in this research is described below in the research instrument section. Furthermore, to expand on variable relationships, this strategy would allow for the research to assess the influence that these PRC constituents have on PCC if indeed a relationship does exist between the variables. The quantitative research approach permitted the investigation to collect, analyse and process data from a large sample all while minimizing bias and improving credibility of the research. 3.3 Research Design The research design is described as “Representing the framework for data collection and data analysis and comprises the following five types: experimental design, cross-sectional 33 or social survey design, longitudinal design, case study design and comparative design” (Saunders et al., 2006, p. 160). A cross-sectional design was regarded as suitable for the current study as it involves assessing data from a specific population (patients) who are selected based on particular interest (patient perspectives of patient centered care and the specific constituents of the patients’ rights charter) at one specific point in time and in a specific setting. The cross- sectional study design in this instance is descriptive in nature as it seeks to describe the characteristics of the chosen variables. The descriptive research design further allows for correlations between the variables to be made as well as to determine the degree of association between the variables (Saunders et al., 2006). The chosen research methodology permits for analysis of the patients’ perceptions of the patients’ rights charter from their hospital experiences, and whether this influences their perception of patient centered care provided within the hospital setting. 3.4 Research Procedure and Methods 3.4.1 Research setting As the purpose of the study was to investigate patient perceptions of the PRC and PCC in a South African public hospital, the Tembisa Provincial Tertiary Hospital was selected as a suitable locality. According to the South African Doctors Hospital (n.d) information page, the hospital provides healthcare services to a vast and wide catchment area. As a Provincial Tertiary hospital, it receives health care users from, and provides specialist support to other regional hospitals and thus requires the expertise of clinicians working as specialists. The hospital is located in the township of Tembisa within the Ekurhuleni municipality of Gauteng Province. The immediate communities serviced by the hospital are Midrand and Diepsloot (including their local township and suburb areas). It is also a referral hospital for approximately twenty smaller clinics and two community healthcare centres in the region spanning across three municipalities. As a tertiary hospital, the facility is also used to provide health education at a tertiary level to train future medical professionals (South African Doctors Hospitals, n.d). With approximately 840 approved and usable beds, the hospital serves a catchment population of close to 2 million people according to 2011 Census (Census, 2011). 34 3.4.2 Research target population The target population for the study included the patient collective who make use of the medical and surgical outpatient departments of the Tembisa Provincial Tertiary Hospital. The medical and surgical outpatient departments were specifically selected as the target population as they consist of patients who attend the hospital for treatment without overnight stay or undergoing critical care. As a result, medical services provided on an outpatient or non-hospitalized basis include those of relevance to PCC and the PRC, namely consultation, diagnosis, treatment and rehabilitation. 3.4.3 Sample population The sample population for the study included two hundred patients from the medical and surgical outpatient departments of the Tembisa Provincial Tertiary Hospital. The sample size was considered appropriate in terms of the limited scope of the study. Sample participants were randomly selected from the waiting area based on availability (i.e. attending the hospital by appointment) and were not selected on the basis of their clinical status (severity of disease or symptoms). Patients were enrolled in the study if they consented to participate and if they met the inclusion and exclusion criteria. This included adult male or female patients over the age of 18, who were able to read, write and communicate in English, Tswana or Zulu (researcher acting as translator). Due to concerns on consent, vulnerable patients (minors, etc) and those with psychiatric conditions were excluded from the study. 3.4.4 Research data collection instrument The study made use of a structured questionnaire with discrete sections to accommodate the aspects under investigation, namely confidentiality, informed consent, patient participation and patient centered care (Appendix 2). The questions were designed for relevancy of the investigation, using the frameworks of PCC, PRC and NCS tool. The structured questionnaire was considered an ideal quantitative data tool for use in this cross sectional study as it made use of closed ended questions and Linkert scale type questions. Linkert scales are used to determine the perspectives and views that individuals have towards a particular element (Jamieson, 2005). A comprehensive and analytical review by Joshi et al. (2015) describes how one can combine the items of a Linkert scale in order to generate a composite score for different 35 participants, rendering the assigned scale an interval scale, thus permitting the data to be statistically treated with Pearson’s correlation coefficient (r) and regression analysis (Joshi et al., 2015). Analysis of the Linkert scale items in this regard facilitated determination of patient perceptions of three specific constituents of the PRC (namely confidentiality, informed consent, patient participation), and establishing if a relationship exists between these three PRC constituents and PCC. A brief description of each of the applicable sections of the structured questionnaire is provided below: Section A – included demographic details of patients such as age, gender, education level, employment status, place of residence and home language. Section B – assessed patient knowledge of rights and aspects of the Patient Rights Charter using closed ended questions. Section C – investigated confidentiality via closed ended questions and a five item Likert scale. Section D – explored informed consent through closed ended questions and a seven item Likert scale. Section E – assessed patient participation by asking closed ended questions and a seven item Likert scale. Section F – evaluated patient centered care using a ten item Likert scale. 3.4.5 Research ethical considerations Participants entered the study voluntarily and were free to withdraw at any time. Anonymity was maintained by omitting participant names from the questionnaire and final report. In addition, completed questionnaires were only accessible to the researcher, whilst all data derived was saved in a password protected file that could only be accessed by the researcher. All results and records pertaining to the study were securely maintained, for a mandatory period of five years. The study was clarified to participants both verbally and via a written participant information sheet, through which written informed consent was obtained prior to the completion of the questionnaire (Appendix 3). Ethical clearance to proceed with the study was obtained from Wits Business School Ethics Committee (Appendix 4), whilst permission to conduct the study at the Tembisa Provincial Tertiary Hospital was obtained from the Gauteng Department of Health (Appendix 6), in addition, staff in the medical and surgical out 36 patient departments of the hospital were duly informed about the research prior to the data collection process. 3.4.6 Research Data collection process The study utilised hard copy questionnaires as opposed to electronic platforms, in order to ensure ease of accessibility and eliminate the need for participants to own a device in order to participate. As the study was conducted during the global Covid 19 pandemic, all relevant precautions were executed to ensure health and safety during the data collection process. Data was collected for a period of five days from consenting patients over a single hospital visit whilst in the waiting area, prior to their consultation. As the medical and surgical department of the hospital operates by appointment only at least one month in advance, repeat visits (and repeat questionnaires) were not possible during the period of data collection. The following procedures were applicable to data collection process: - Patients were randomly approached in the waiting area to ascertain their interest in participation, their eligibility for the study, and to obtain their consent to participate. - After the researcher fully explained the study to the patient, an information and consent form was provided to them, which disclosed the details relevant to the study. The forms were signed by each participant acknowledging their understanding and consent to participate. - The participant then immediately completed the questionnaire while the researcher was available for assistance. - Completed questionnaires were then collected in a locked box at the end of each day, and the box was kept in a safe and secure location, accessible only to the researcher. 3.4.7 Research data processing and analysis The data gathered from participant questionnaires was analysed using descriptive statistics (frequencies and percentages) via IBM SPSS Statistics®. In order to fully address the research aim and objectives, further statistical analyses were used to describe the relationship between the variables of confidentiality, informed consent, patient participation and patient centered care. This was performed using Pearson’s Correlation Analysis to determine the relationship between the variables, whilst Multiple Linear 37 Regression was used to determine how the variables influence each other. Results of the data analysis are presented in both graphical and tabular form in chapter four to follow. 3.5 Research Reliability and Validity Reliability and validity of the research were articulated by the fact that the questions posed in the participant questionnaire were specifically tailored to assess confidentiality, informed consent, patient centered care and patient rights in accordance with criteria outlined in the PRC and NCS tool. In addition, all participants were required to complete the same questions. The descriptions of the sample, procedure and design are also sufficiently comprehensive to allow for transferability to other settings in a similar context. 38 4 CHAPTER FOUR - RESULTS 4.1 Introduction This chapter provides the presentation of results from the data collected. Data analysis was performed in line with the questionnaire responses received from participants. Whilst two hundred and thirty (230) patients were approached for participation, responses were received from two hundred (200) participants in total. In the process of analysis, participant responses were categorized to coincide with the particular sections of the questionnaire (namely demographic information, patient rights, confidentiality, informed consent, patient participation and patient centered care). The responses were assessed using frequencies, percentages (rounded off where applicable) as well as Pearson’s Correlation and Multiple Linear Regression analytical tools. 4.2. Patient Demographic Details 4.2.1 Age Results obtained from the respondents regarding age are represented in Table 1 and Figure 1 below: Table 1: Percentage of Participant Age Age Frequency Percent < 20 9 4% 20-35 91 45% 36-45 50 25% 46-55 25 13% > 56 25 13% Total 200 100% Figure 1: Participant Age Groups 0 10 20 30 40 50 < 20 20-35 36-45 46-55 > 56 P e rc e n ta g e ( % ) Age groups 39 As shown in Table 1 and Figure 1 above, of the sampled participants: • The majority at forty five percent (45%, n = 91) were between 20 and 35 years. • Twenty five percent (25%, n= 50) were between 36 and 45 years. • Thirteen percent (13%, n=25) were aged between 46 and 55 years and (13%, n=25) over 56 years, respectively. • The minority at four percent (4%, n = 9) were under 20 years of age. 4.2.2. Gender The number of males versus females comprising the participants is thirty nine percent (39%, n = 78) and sixty one percent (61%, n = 122) respectively. This is depicted in Table 2 and Figure 2 below: Table 2: Percentage of Participant Gender Frequency Percentage Male 78 39% Female 122 61% Total 200 100% Figure 2: Participant Gender 4.2.3 Education level Results pertaining to the highest level of education attained by participants is shown in Table 3 and Figure 3 below: 39% 61% Gender Male Female 40 Table 3: Percentage Education Level of Participants Frequency Percentage No Schooling 7 3% Primary School 9 5% High School 101 51% Undergraduate 56 28% Postgraduate 27 13% Total 200 100% Figure 3: Participant Education Level According to the results in the Table 4.3 and Figure 4.3 above, of the sampled participants who provided information about their education: • The highest number at fifty one percent (51%, n= 101) attained high school level education. • Twenty-eight (28%, n= 56) had undergraduate education. • Thirteen percent (13%, n= 27) attained postgraduate education. • Five percent (5%, n= 9) had primary school as the highest level of education. • The lowest number at three percent (3%, n=7) had no formal education. 0 10 20 30 40 50 60 No Schooling Primary School High School Undergraduate Post Graduate P e rc e n ta g e ( % ) Education level Highest education level 41 4.2.4 Employment status The employment status of participants is reflected in Table 4 and Figure 4 as follows: Table 4: Percentage of Participant Employment Status Frequency Percentage Unemployed 103 52% Self-Employed 28 14% Formal Employment 50 25% Casual Labourer 4 2% Pensioner 15 7% Total 200 100% Figure 4: Employment Status of Participants From Table 4 and Figure 4 above, the employment status of participants is categorised as follows: • The majority of participants at fifty two percent (52%, n=103) are unemployed. • Twenty-five percent (25%, n=50) have formal employment. • Fourteen percent (14%, n=28) are self-employed. • Seven percent (7%, n=15) are pensioners. • The least number of participants at two percent (2%, n=4), perform casual labour. 0 10 20 30 40 50 60 Unemployed Self-Employed Formal Employment Casual Laborer Pensioner P e rc e n ta g e ( % ) Employment status 42 4.2.5 Place of residence Results for place of participant residence illustrate the majority of respondents (81%, n=163) reside in a township, fifteen percent (15%, n=30) reside in a suburb, while the minority at four percent (4%, n=7), reside in a rural area as seen in Table 5 and Figure 5 below: Table 5: Percentage of Participant Place of Residence Frequency Percentage Township 163 81% Suburb 30 15% Rural 7 4% Total 200 100% Figure 5: Participant Place of Residence 4.2.6 Home language Results reflect the participants’ home language as shown in Table 6 and Figure 6 as follows: Table 6: Percentage of Participant Home Language Frequency Percentage Afrikaans 6 3% English 16 8% Nguni (Zulu, Xhosa, Swati, Ndebele) 64 32% Sotho (Sepedi, Sesotho, Setswana) 86 43% Tsonga 19 9% Venda 6 3% Other, please specify 3 2% Total 200 100% 0 20 40 60 80 100 Township Suburb Rural P e rc e n ta g e ( % ) 43 Figure 6: Participant Home Language *Nguni: Zulu/ Xhosa/ Swati/ Ndebele **Sotho: Sepedi/ Sesotho/ Setswana As reflected in Table 6 and Figure 6 above: • Sotho is the home language for most of the participants (43%, n=86). • This is followed closely by thirty-two percent (32%, n=64) of participants with Nguni as the home language. • Nine percent (9%, n=19) have their home language as Tsonga, followed by eight percent (8%, n=16) whose native language is English. • Both Afrikaans and Venda are spoken by three percent (3%, n=6) of participants, respectively. • The least number of participants (2%, n=3) have other native languages which did not form part of the options on the questionnaire. 4.3 Research question 1: What are the perceptions of patient experiences on constituents of the national Patient Rights Charter (confidentiality, informed consent, patient participation)? 4.3.1 Patient rights 4.3.1.1. Awareness of patient rights Results illustrate that the majority of patients at eighty six percent (86%, n=172) were aware they have rights whilst, the minority at fourteen percent (14%, n=28) were not aware of this. These results are depicted in Table 7. and Figure 7 below: 0 10 20 30 40 50 Afrikaans English *Nguni **Sotho Tsonga Venda Other P e rc e n ta g e ( % ) Language Home Language 44 Table 7: Awareness of patient rights Frequency Percentage No 28 14% Yes 172 86% Total 200 100% Figure 7: Awareness of patient rights 4.3.1.2 Awareness of the patient rights charter In accordance with the results pertaining to participant awareness of the Patient Rights Charter, the majority of patients at sixty nine percent (69%, n=138) indicated they were not aware of the PRC whilst, the minority at thirty one percent (31%, n=62) were aware of existence of the charter, as reflected in Table 8 and Figure 8 below: Table 8: Awareness of the patient rights charter Frequency Percentage No 138 69% Yes 62 31% Total 200 100.0 14% 86% Are you aware that you have rights as a patient? No Yes 45 Figure 8: Awareness of the patient rights charter The sixty nine percent (69%) of participants who indicated they were aware of the PRC were further asked where they had heard about the charter. The results indicating how participants became informed of the charter are reflected in Table 9 and Figure 9 below: Table 9: Information Source for Patients’ Rights Charter Frequency Percentage Clinic 7 21% Hospital 11 33% online 6 19% television 4 12% word of mouth 2 6% other 3 9% Total 33 100% Figure 9: Information Source for Patients' Rights Charter 69% 31% Are you aware of the existence of the National patients' rights charter? No Yes 0 10 20 30 40 Clinic Hospital online television word of mouth otherP e rc e n ta g e ( % ) Source Where did you hear about the Patients' rights charter? 46 As shown in Table 9 and Figure 9 above, the 69% of participants who knew about the PRC, indicated they heard about it from the following sources: • Thirty three percent (33%, n=11), forming majority of responses, heard about the PRC from the hospital. • Twenty one percent (21%, n= 7), said they found information about the PRC from the clinic, whilst nineteen percent (19%, n= 6) were informed online. • Six percent (6%, n=2), of participants heard of the PRC from sources such as television and by word of mouth respectively while nine percent (9%, n=3) stated other miscellaneous sources. 4.3.2 Confidentiality 4.3.3.1 Awareness of confidentiality Results illustrate that the majority of patients at seventy nine percent (79%, n= 156) were aware they had the right to confidentiality, whilst eighteen percent (18%, n= 37) seemed unsure and the minority at three percent (3%, n = 7) were not aware of this patient right. These results are shown in Table 10 and Figure 10 below: Table 10: Participant Awareness of Confidentiality Figure 10: Participant Awareness of Confidentiality 0 10 20 30 40 50 60 70 80 90 No Yes I don`t know Percentage (%) I have the right to confidentiality Frequency Percentage No 7 3% Yes 156 79% I don`t know 37 18% Total 200 100% 47 4.3.3.2 General understanding of confidentiality The seventy nine percent (79%, n=156) of participants who indicated they were aware of confidentiality as a patient right, were further required to indicate how they would best describe and define their right to confidentiality. The descriptions of confidentiality were divided into four categories using the definition of confidentially as stated in the PRC, “Information concerning one’s health, including information concerning treatment may only be disclosed with informed consent, except when required in terms of any law or an order of the court” (The Department of Health, n.d.). The four categories were as follows: - None (no understanding): where all the pertinent parameters of confidentiality were omitted. - Poor understanding: where most of the pertinent parameters of confidentiality were omitted. - Average understanding: where some parameters of confidentiality were included. - Good understanding: where all the parameters of confidentiality were included. The results pertaining to the above categories are reflected in Figure 11 below: Figure 11: General understanding of Confidentiality As shown in Figure 11 above, the 79% of participants who affirmed their right to confidentiality, were found to have a level of understanding as follows: • In accordance with the definition stated in the PRC, most participants at seventy percent (70%), displayed a poor understanding of the parameters of this right. 15% 70% 15% 0% Level of understanding of confidentiality None Poor Average good 48 • Fifteen percent (15%) demonstrated average correlation with the definition of confidentiality, with understanding of some of the parameters. • Fifteen percent (15 %) displayed a poor understanding of its parameters overall. • There were no participants (0%) who had a good understanding of confidentiality and all the parameters that pertain to it. 4.3.3.3. Patient perception of confidentiality specific parameters The participant perceptions were assessed in relation to specific parameters of confidentiality, where they were required to indicate to what extent they agree or disagree with predetermined statements describing these parameters. For ease of interpretation, responses which reflect ‘agree’ and ‘strongly agree’ have been aggregated, the same applies to responses reflecting ‘disagree’ and ‘strongly disagree.’ Results are portrayed in Table 11 below: Table 11: Percentage Perception of Confidentiality Specific Parameters Disagree/ Strongly disagree Unsure Agree/ Strongly agree Mean Standard deviation C1 The hospital makes sure my information is kept in a safe and secure place Count 14 36 149 4.02 0.992 Row N % 7% 18,10% 74,90% C2 The hospital makes sure my information is not seen by other people Count 18 44 136 3.90 1.064 Row N % 9,10% 22,20% 68,60% C3 The doctor makes sure our conversations are only between the two of us Count 21 25 151 4.00 1.055 Row N % 10,70% 12,70% 76,70% C4 In some instances, the doctor can share my information if necessary Count 66 33 98 3.14 1.374 Row N % 33,50% 16,80% 49,80% C5 In some instances, the hospital can release my information if necessary Count 91 36 70 2.79 1.326 Row N % 46,20% 18,30% 35,60% Overall 3.9715 0.90873 As shown in Table 11 above, the participant perceptions of confidentiality specific parameters are described as follows: • C1: The majority of participants (75%, n=149) felt the hospital ensures information is kept safe and secure, whilst eighteen percent (18%, n=36) were unsure and the least number at seven percent (7%, n=14) did not agree. • C2: Most participants (69%, n=136) agreed that the hospital ensures their information is not seen by others. Twenty two percent (22%, n=44) were unsure of this aspect while the minority (9%, n=18) disagreed. 49 • C3: The least number of participants (n=21) at eleven percent (11%) disagreed that the doctor ensures conversations remain between doctor and patient only, thirteen percent were unsure of this whilst the majority of participants at seventy seven percent (77%, n=151) felt assured of this aspect. • C4: Almost half the number of patients (50%, n=98) agreed that the doctor could share their information if necessary, while thirty four percent (34%, n=66) did not agree. Seventeen percent (17%, n=33) were unsure of this. • C5: Less than half the number of patients (46%, n=91) felt the hospital could not release their information if necessary, eighteen percent (18%, n=36) were unsure of this and more than half (36%, n=70) agreed this was acceptable. 4.3.2 Informed Consent 4.3.2.1 Awareness of informed consent In accordance with the results, most patients at fifty six percent (56%, n= 111) were aware they had the right to informed consent, whilst thirty five percent (35%, n=71) were unsure and the minority at nine percent (9%, n=18) were not aware of this right. These results are shown in Table 12 and Figure 12 below: Table 12: Awareness of Informed Consent Figure 12: Awareness of Informed Consent 9 55,5 35,5 0 10 20 30 40 50 60 No Yes I don`t know Percentage (%) I have the right to informed consent Frequency Percentage No 18 9% Yes 111 56% I don`t know 71 35% Total 200 100% 50 4.3.2.2 General understanding of informed consent The fifty six percent (56%, n=111) participants who indicated they were aware of informed consent as a patient right, were requested to indicate how they would best describe and define their right to informed consent. The descriptions of informed consent were divided into four categories using the definition of informed consent as stipulated in the Patients’ Rights Charter “Everyone has the right to be given full and accurate information about the nature of ones illnesses