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Patient perspectives on health care system navigation : the chronic illness multi-morbidity experience Ravenscroft, Eleanor Fay 2008

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PATIENT PERSPECTIVES ON HEALTH CARE SYSTEM NAVIGATION: THE CHRONIC ILLNESS MULTI-MORBIDITY EXPERIENCE by ELEANOR FAY RAVENSCROFT BSc (Nursing), The University of Cape Town, 1987 MSN, The University of British Columbia, 1999  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  DOCTOR OF PHILOSOPHY  in  THE FACULTY OF GRADUATE STUDIES (Nursing)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)  March 2008 © Eleanor Fay Ravenscroft, 2008  ABSTRACT Meeting the health care needs of people with chronic conditions presents one of the greatest challenges for 21st century health care system renewal. Appropriate redesign of health care delivery with this complex patient population in mind requires information from many sources. Although much is known about the patient experience of chronic illness much less is understood about how patients navigate their health care delivery context. The purpose of this qualitative study was to examine the point of view of patients dealing with multi-morbidity. These people have a unique understanding of how health care delivery links across time, place, and settings because of the care they require for their multiple chronic conditions. An interpretive descriptive design was used to examine patient navigation from the perspective of 20 adult patients with chronic kidney disease, and co-existing diagnoses of diabetes mellitus and/or cardiovascular disease. The findings generated from iterative, constant comparative analysis add important patient perspectives about health care system navigation. From the consumer perspective health care navigation is challenging, requiring (a) ongoing discovery about the complex social structures that make up the health care system, and (b) learning how to strategically use this knowledge to manage the health care system. The findings highlight the disjunctures and misalignments in the health care delivery system, the cumulative health care-related burden of multiple chronic conditions for consumers, and consumer concerns about subtle inequities in the health care system. As health care renewal efforts gain momentum new knowledge from the perspective of consumers, such as that captured in this research, is important. The consumer perspective provides a valuable opportunity for stakeholders in health care policy- and decision-making  ii  to contextualize and make greater sense of the information used in making decisions about health care service delivery for vulnerable populations, like patients with multiple chronic conditions.  iii  TABLE OF CONTENTS ABSTRACT ................................................................................................................................... ii TABLE OF CONTENTS ............................................................................................................ iv LIST OF TABLES ...................................................................................................................... vii LIST OF FIGURES ................................................................................................................... viii LIST OF ABBREVIATIONS ..................................................................................................... ix ACKNOWLEDGEMENTS ....................................................................................................... xii DEDICATION............................................................................................................................ xiii CHAPTER ONE: INTRODUCTION ......................................................................................... 1 Introduction ................................................................................................................................. 1 Issues of Terminology................................................................................................................. 1 Health Care Recipients ........................................................................................................... 2 Chronic Conditions ................................................................................................................. 3 Co-Existing Disease ................................................................................................................ 4 Navigation ............................................................................................................................... 4 Chronic Disease Management ................................................................................................ 7 Background to the Problem ........................................................................................................ 8 Prevalence and Cost of Chronic Conditions ........................................................................... 8 Prevalence. .......................................................................................................................... 8 Economic impact. ............................................................................................................. 11 The Context of Health Care Delivery ................................................................................... 12 Historical influences. ........................................................................................................ 12 Health care delivery fragmentation. .................................................................................. 14 Trends in system redesign. ................................................................................................ 15 Problem Statement .................................................................................................................... 16 Purpose...................................................................................................................................... 17 Research Questions ................................................................................................................... 18 Assumptions.............................................................................................................................. 18 Summary ................................................................................................................................... 19 CHAPTER TWO: REVIEW OF THE LITERATURE .......................................................... 21 Introduction ............................................................................................................................... 21 Defining Chronic Conditions .................................................................................................... 22 Scope of the Problem ................................................................................................................ 23 Care Delivery Strategies ........................................................................................................... 28 Chronic Care Model .............................................................................................................. 31 Innovative Care for Chronic Conditions Framework ........................................................... 32 Primary Health Care ............................................................................................................. 34 iv  The Research Context ........................................................................................................... 36 Patient Perspective .................................................................................................................... 43 Significance of Context......................................................................................................... 44 Patient Experience of Multi-Morbidity................................................................................. 50 CKD and DM. ................................................................................................................... 51 Self-management. ............................................................................................................. 52 Primary and acute health care. .......................................................................................... 53 Navigation in the context of multi-morbidity. .................................................................. 56 Common themes. .............................................................................................................. 57 Summary ................................................................................................................................... 60 CHAPTER THREE: METHOD ............................................................................................... 63 Introduction ............................................................................................................................... 63 Strategy of Inquiry .................................................................................................................... 63 Location of the Researcher ....................................................................................................... 65 Recruitment Sites ...................................................................................................................... 67 Negotiating Access ............................................................................................................... 68 Selection of Participants ........................................................................................................... 69 Inclusion Criteria .................................................................................................................. 70 Sampling Process .................................................................................................................. 71 Recruitment Procedure.......................................................................................................... 72 Reasons for Non-Inclusion ................................................................................................... 74 Sample Size............................................................................................................................... 74 Data Collection ......................................................................................................................... 75 Participant Characteristics ........................................................................................................ 77 Data Analysis ............................................................................................................................ 79 Ethical Considerations .............................................................................................................. 83 Rigor ......................................................................................................................................... 84 Limitations of this Study........................................................................................................... 86 Summary ................................................................................................................................... 88 CHAPTER FOUR: FINDINGS: NAVIGATING THE HEALTH CARE SYSTEM AS SEEN THROUGH THE EYES OF PATIENTS ...................................................................... 93 Introduction ............................................................................................................................... 93 The Health Care Context .......................................................................................................... 94 Continuity of Care Issues ...................................................................................................... 94 Fragmented systems. ......................................................................................................... 95 Health care personnel. ....................................................................................................... 98 Patient Information Issues................................................................................................... 100 Logistical Issues .................................................................................................................. 102 Appointments. ................................................................................................................. 103 Parking and transport. ..................................................................................................... 104 Time. ............................................................................................................................... 105 How Molehills Become Mountains .................................................................................... 106 Navigating Rough Terrain ...................................................................................................... 109 Discovering What You Must Learn about the Health Care System ................................... 110 v  Learning about health care delivery organization. .......................................................... 110 Learning to differentiate between health care providers................................................. 115 Learning about “rules”. ................................................................................................... 118 Learning about provider preferences. ............................................................................. 122 Learning your expectations may be unrealistic. ............................................................. 123 Learning not to trust in the health care system. .............................................................. 126 Speculating about what you learn. .................................................................................. 128 Discovering How to Manage the Health Care System ....................................................... 132 Deciding to act. ............................................................................................................... 132 Being vigilant. ................................................................................................................. 134 Speaking up. .................................................................................................................... 136 Using relationships.......................................................................................................... 138 Being tactical. ................................................................................................................. 144 Conclusion .............................................................................................................................. 148 CHAPTER FIVE: DISCUSSION OF THE FINDINGS ....................................................... 152 Introduction ............................................................................................................................. 152 Revisiting the Patient Role...................................................................................................... 153 Self-Management ................................................................................................................ 154 Patient Safety ...................................................................................................................... 156 Continuity of Care............................................................................................................... 158 Consumer Engagement ....................................................................................................... 161 Reconsidering Patient Work ................................................................................................... 163 Re-examining Health Care Renewal ....................................................................................... 165 Core Values ......................................................................................................................... 165 Targeting Management of Chronic Conditions .................................................................. 168 Resources ............................................................................................................................ 172 Assessing Health Care Renewal Progress........................................................................... 176 Summary ................................................................................................................................. 177 CHAPTER SIX: SUMMARY, CONCLUSIONS, AND IMPLICATIONS ........................ 180 Summary ................................................................................................................................. 180 Conclusions ............................................................................................................................. 182 Implications for Health Care Renewal .................................................................................... 184 Implications for Research ....................................................................................................... 189 Conclusion .............................................................................................................................. 192 REFERENCES .......................................................................................................................... 194 APPENDICES ........................................................................................................................... 217 Appendix A ............................................................................................................................. 218 Appendix B ............................................................................................................................. 237 Appendix C ............................................................................................................................. 240 Appendix D ............................................................................................................................. 243 Appendix E ............................................................................................................................. 246  vi  LIST OF TABLES Table 1.1 Terminology and Stages of Chronic Kidney Disease ............................................. 20 Table 3.1 Participant Demographic Characteristics (N = 20) ................................................. 90 Table 3.2 Participant CKD Data (N = 20) .............................................................................. 91 Table 3.3 Participant Multi-Morbidity Data (N = 20) ............................................................ 92  vii  LIST OF FIGURES Figure 2.1 The Chronic Care Model ....................................................................................... 61 Figure 2.2 Innovative Care for Chronic Conditions Framework ............................................ 62 Figure 4.1 Discovering What You Must Learn .................................................................... 150 Figure 4.2 Discovering How to Manage ............................................................................... 151 Figure 5.1 Pathways for Healthcare Renewal ....................................................................... 179  viii  LIST OF ABBREVIATIONS BC  British Columbia  BCPRA  British Columbia Renal Agency  BREB  Behavioral Research Ethics Board  CCAC  Community Care Access Centre  CCDPC  Centre for Chronic Disease Prevention and Control  CCM  Chronic Care Model  CDA  Canadian Diabetes Association  CDM  Chronic disease management  CDPAC  Chronic Disease Prevention Alliance of Canada  CHC  Community Health Centre  CHSPR  Centre for Health Services and Policy Research  CIHI  Canadian Institute for Health Information  CKD  Chronic kidney disease  COPD  Chronic obstructive pulmonary disease  CORR  Canadian Organ Replacement Register  CT  Computerized tomography  CVD  Cardiovascular disease  DM  Diabetes mellitus  EHR  Electronic health record  ESRD  End-stage renal disease  FFS  Fee-for-service  ix  FHT  Family Health Team  GFR  Glomerular filtration rate  GP  General practitioner  HCC  Health Council of Canada  HD  Hemodialysis  HIDS  Hospital Insurance and Diagnostic Services  ICCC  Innovative Care for Chronic Conditions  ICIC  Improving Chronic Illness Care  KDOQI  The Kidney Disease Outcomes Quality Initiative  KFOC  Kidney Foundation of Canada  LHINs  Local Health Integration Networks  MeSH  Medical Subject Headings  NLM  National Library of Medicine  OACCAC Ontario Association of Community Care Access Centres PD  Peritoneal dialysis  PHAC  Public Health Agency of Canada  PHCTF  Primary Health Care Transition Fund  PROMIS  Patient Record/Registration and Outcome Management Information System  REB  Research Ethics Board  RN  Registered nurse  RRT  Renal replacement therapy  TB  Tuberculosis  x  USA  United States of America  WHIS  Western Health Information Collaborative  WHO  World Health Organization  xi  ACKNOWLEDGEMENTS My completion of my doctoral studies would not have been possible without funding, encouragement, and guidance. I am sincerely grateful to everyone who supported me during the journey. Generous funding from several sources made it so much easier for me to dedicate time and energy to my doctoral studies. My sincere thanks go to The Kidney Foundation of Canada for an Allied Health Doctoral Fellowship award; The University of British Columbia for Ph.D. Tuition Fee, University Graduate Fellowship, and Flora S. Musgrave Scholarship in Nursing awards; and the Canadian Nurses Foundation for Carolyn Sifton Scholarship and Senator M. Paterson Fellowship awards. Thank you to all the clinical and administrative staff at the hospital research sites who helped to make it possible for me to connect with patients and their family members. My special thanks go to the study participants who so generously gave of their time and energy to share their experiences with me. This work would not have been possible without them. Thank you to my supervisory committee – Dr. Sally Thorne, Dr. Carol Jillings, Dr. Adeera Levin, Dr. Sabrina Wong, and Dr. Heather Beanlands – for their enthusiasm for my research topic, for sharing their wisdom, and for such expert guidance. Thank you to my husband for inspiring me to dream big and take the first step on this adventure. Thank you to my son for ensuring my life was balanced. All my family and friends have my everlasting, heartfelt gratitude for their fortitude and support no matter what and for celebrating success along the way.  xii  DEDICATION To Vaughn and Benjamin  xiii  CHAPTER ONE: INTRODUCTION Introduction My incentive for this research stemmed from a number of issues facing health care delivery in the early part of the 21st century. These issues include the increasing prevalence of chronic conditions and an associated increase in the need for health care, the fragmentation of health care delivery systems, and ongoing health care system redesign. These complex issues present ongoing challenges to policy makers, care providers, patients, and families dealing with any health care system. My intent with my research was to gather information about health care system navigation from the perspective of a particular group of consumers, that is, patients dealing with co-existing chronic conditions. The findings from this study have value for policy makers and health care providers dealing with the challenges of care delivery for those with chronic conditions. I have divided this introductory chapter into three parts. I begin by considering some of the issues related to the terminology used in the current discourse about chronic illness and health care delivery. Then I present the background to the problem: the prevalence and cost of chronic conditions and multi-morbidity and the context of health care delivery, particularly as it pertains to those with dealing with chronic illness. I conclude this introductory chapter by introducing the study: the problem as I understood it entering into the research, the purpose, the research questions, and the assumptions underlying this research. Issues of Terminology A striking feature of the discourse about chronic conditions and health care delivery systems is an assumed understanding of terminology that may lead to misinterpretation or misunderstanding. Therefore, I am prefacing my introduction of my research and discussion  1  of these issues by considering some of the terminology used in the current discourse about the delivery of health care for chronic conditions. Examples of terminology that can be problematic include terms used in reference to: health care recipients, chronic conditions, coexisting disease, navigation, and chronic disease management (CDM). I have two goals in beginning my thesis with a consideration of such terminology. One, I aim to acquaint the reader to the various ways in which terminology is being used in the discourse about chronic conditions. Two, I intend to identify the way in which I am interpreting this terminology for the purposes of writing about my research. When writing about the works of other authors I use the terms appearing in the original publication(s). Health Care Recipients There are a number of terms used to refer to recipients of health care. Some of the commonly used terms include patient, client, consumer, and resident. The term patient has historically been the one most commonly used. During the 1970s several authors and organizations identified the term patient as problematic and introduced the term client. Ongoing concerns include whether or not the term patient is appropriate in the context of preventive care or health maintenance for healthy individuals and the paternalistic attitudes that it may imply (Wing, 1997). However, the use of the term patient persists in the health care environment and literature as the dominant term referring to recipients of health care. The term client also remains widely used. Wing suggests that clinicians ask people seeking health care about their preferences. Many health care databases use the National Library of Medicine (NLM) Medical Subject Headings (MeSH ) thesaurus and treat these two terms as interchangeable. The term consumer often connotes people who are using or purchasing services and tends to be used in conjunction with qualifiers (e.g., consumer  2  advocacy/rights/participation/involvement, etc.). Consumer is a broader term that I interpret as including people beyond the immediate recipient of care, that is, the patient. For the purposes of this research I use both the term patient and consumer. I use the term patient to refer specifically to the individual with the chronic conditions. I use the term consumer to refer either to the patient or to the patient and their family (as identified by the patient) in the context of advocacy or contribution to the extant body of knowledge about health care system navigation. Chronic Conditions Amongst the terms used to refer to chronic health problems the most common are chronic illness, chronic disease, and chronic condition. Authors and others use the terms chronic illness and chronic disease interchangeably, as evidenced by the NLM MeSH headings amongst others. However, these terms also appear to have more particular meanings. In some contexts ‘chronic disease’ seems to refer more explicitly to a medical condition, such as cardiovascular disease (CVD) or kidney disease. Likewise, chronic illness may be understood as referring more particularly to the experience of living with a chronic disease. These subtle shifts in meaning are potentially problematic. An alternative to using either the term chronic disease or chronic illness is to use the more recently introduced term: chronic condition. The World Health Organization (WHO) (2005) defined chronic conditions as “health problems that require ongoing management over a period of years or decades …. [and] typically affect the social, psychological and economic dimensions of a person’s life” (p. 13). For the purposes of this research I use the term chronic condition as defined by the WHO unless writing about topics such as disease management programs when I use the contemporary terminology of that field.  3  Co-Existing Disease Authors use several terms in writing about people dealing with multiple or concurrent chronic conditions. Two of these terms are co-morbidity and multi-morbidity. Of these, comorbidity is the older and more established term in the literature. Authors differ on the meaning and application of these terms and they are often used interchangeably (Fortin et al., 2004). Thus, both terms are potentially problematic for researchers and knowledge synthesis. Van den Akker, Buntinx, & Knottnerus (1996) suggested defining multi-morbidity as two or more coexisting chronic conditions. The term multi-morbidity has been used by authors for approximately a decade but it is not yet in wide-spread use or indexed as a search term (e.g., in the NLM MeSH browser). However, the term co-morbidity is potentially more problematic owing to idiomatic use by authors writing about specific conditions, for example, in mental health to refer to the coexistence specifically of substance use with other mental disorders. Therefore, in writing about my research I use the term ‘multi-morbidity’ as defined by van den Akker et al. Navigation Navigation is a complex, multifaceted construct encompassing several intricately related concepts. Some of the terms given to these concepts include, amongst others, continuity of care, trajectory, integration, coordination, the continuum of care, and access to care. I touch on several of these interrelated concepts in this discussion aimed at clarifying what I mean when using the term navigation. The concept of continuity of care is commonly used in health care and the health care literature despite some lack of agreement about the definition and clinical significance of the concepts after 25 years of research (Sturmberg, 2003). Authors such as Sparbel and  4  Anderson (2000b) define continuity of care as “a series of connected patient-care events both within a health care institution and among multiple settings” (p. 17). They emphasize that continuity of care requires “coordination and linkages across time, settings, providers, and consumers of health care” (2000b, p. 17). Similarly, the WHO (2002) suggested in the Innovative Care For Chronic Conditions: Building Blocks For Action: Global Report that: Integration, coordination, and continuity should occur across time and health care settings, including primary health care, speciality care (if available), and inpatient care. Care should be integrated across all categories of chronic conditions, moving beyond traditional disease boundaries. (p. 9) Rothman and Wagner (2003) also noted the importance of coordinated care in their article supporting the role of primary health care in CDM. A related and integral concept to that of continuity of care is the continuum of care. The concept of the continuum of care appears to be understood in two ways. In the first, I understand the continuum of care to be the delivery of care across health care settings. These settings range from primary health care (e.g., family physician’s office or community health clinic) to tertiary care (e.g., hospital). In the second, I understand the continuum of care as the delivery of care across the disease trajectory. Care across the disease trajectory can be understood as including “health promotion, disease prevention, acute and chronic care, as well as palliative and rehabilitative care” (World Health Organization, 2005, p. 3). Both aspects of the continuum of care are important to continuity of care. In the context of the preceding discussion I understand the concept of continuity of care as referring to the co-ordination and integration of care such that the care received by an individual is compatible across diseases, and is congruent and consistent across the  5  continuum of care, time and health care settings. Continuity of care theoretically enhances consumer access to appropriate care. Rasmussen, Wellard, and Nankervis (2001) observe that access and continuity of care are considered key outcomes of successful navigation. Navigation is the work required to know and understand the health care system and to move through the health care system to access relevant care. In the current literature the construct of navigation is applied in two ways. In the first, the key concept is the use of trained individuals and/or systems to assist patients and care providers (usually physicians) to access and move through the health care system. For example, the delivery of cancer care in the Canadian province of Nova Scotia where Cancer Patient Navigators were introduced in 2002 to act as the hub of all coordination, transition, and integration of services as well as cancer-related expertise and knowledge about the cancer care system. The 2003 program evaluation (Corporate Research Associates Inc., 2004) demonstrated an improvement in quality and consistency of cancer care, improving communication between care professionals. A finding of reduced duplication of services was associated with increased efficiency and more cost-effective care. Navigation in this sense is receiving considerable Canadian and international attention. However, it is the second application of the construct of navigation that is pertinent for this research proposal. In this sense the construct of navigation is applied to refer to the work done by the consumer to ensure access and continuity of care for themselves or a family member. Rasmussen et al. define navigation as obtaining “knowledge and understanding of where you are, where to access care, and how to do this” (2001, p. 632). This work done by the consumer enables them to find their way and move through the system to access care and enhance their continuity of care. The work of navigation is  6  increased when systemic impediments to continuity of care exist, for example, fragmentation of care delivery, as noted by Romanow (2002) in his report on the future of health care in Canada. Chronic Disease Management The term chronic disease management is used extensively in the literature although the interpretation of what this means differs widely (G. Anderson & Knickman, 2001; Norris, Glasgow, Engelgau, O'Connor, & McCulloch, 2003). It is a term that can be broadly interpreted as referring to varied approaches to delivering care for people with chronic conditions. CDM derives from disease management, a term that has been used since before 1980 to describe interventions for specific conditions. Despite wide-spread use there is inconsistency in the way in which disease management is defined. Norris et al. suggest that this inconsistency in defining goals, disease management program components, and the degree of focus on the patient has resulted in the association of the term with negative connotations. Despite this they argue that the term disease management has value if “used to describe a system of healthcare delivery that can improve both health and economic outcomes” (p. 479). In the context of chronic conditions, Norris et al. (2003) propose defining disease management as an organized , proactive, multicomponent, patient-centered approach to healthcare delivery that involves all members of a defined population … who have a specific chronic disease, or a subpopulation with specific characteristics. Care is focused on and integrated across: (i) the entire spectrum of the disease and its complications; (ii) the prevention of comorbid conditions; and (iii) the relevant aspects of the healthcare  7  delivery system. The goal is to improve short-and long-term health and/or economic outcomes in the specified population with the disease. (p. 479) In my research I use this definition of CDM as describing integrated care delivery programs aimed at improving access to care and continuity of care for people with chronic conditions. Background to the Problem The impetus for my research stems from a number of issues facing health care delivery in the early part of the 21st century. These issues include (a) the increasing prevalence and associated cost of chronic conditions and multi-morbidity, and (b) the context of health care delivery. I shall examine each of these background issues before presenting my research. Prevalence and Cost of Chronic Conditions There is a world-wide recognition of the challenges to the health care system presented by the need to provide care not only for those with acute conditions but also growing numbers of people with one or more chronic conditions. The economic impact of chronic conditions is significant (World Health Organization, 2002) making increasing prevalence a serious concern for anyone involved in the delivery of health care. I discuss these issues in the context of chronic kidney disease (CKD), diabetes mellitus (DM), and CVD as these are excellent examples of major chronic conditions that commonly co-exist. Prevalence. The issue of increasing numbers of people dealing with chronic conditions such as DM, CVD, and CKD is not new (Hoffman, Rice, & Sung, 1996; Policy Research Division, 1998; World Health Organization, 2002, 2005; Yach, Hawkes, Linn Gould, & Hofman, 2004). However, interpretation of the available data is problematic. One of the key issues in  8  interpreting the chronic condition prevalence data is a lack of standard measurement criteria particularly with regard to how conditions are defined and included. Fortin et al. (2004) note that not all chronic conditions are considered comparable in severity, for example, eczema and DM. The definition of conditions may also vary; for example, what is included in data pertaining to the prevalence of CVD may range from dyslipidemia to coronary artery disease. Similarly, the prevalence data for DM in Canada may be difficult to interpret because of a lack of distinction between Type I and Type II DM. Despite these limitations, there is no doubt that the prevalence of chronic conditions is increasing and presents a challenge internationally. The WHO (2005) estimates that “chronic conditions account for over half of the global disease burden” (p. 15) if chronic conditions include “health problems that require ongoing management over a period of years or decades” (p. 13). Globally chronic conditions also account for the majority of deaths; in 2002 approximately 17 million deaths were attributed to CVD and 1 million deaths to DM worldwide. Of particular concern, the prevalence of chronic conditions is expected to continue to rise; for example, global prevalence of DM is expected to increase from 2.8% to 6.5% by 2030 (Yach et al., 2004). Acknowledged gaps in available surveillance data also make assessing the prevalence of chronic conditions difficult (Leiter et al., 2001). Data from the mid-1990’s suggests that the prevalence of DM in Canada is approximately 5% of the population, with Type II DM accounting for approximately 90% of all cases; a further 3-5% of the population is estimated to have undiagnosed Type II DM (Leiter et al., 2001; Tan & MacLean, 1995). Similar prevalence rates have been reported for CVD (Manuel, Leung, Nguyen, Tanuseputro, & Johansen, 2003). The prevalence of CKD across the trajectory of the disease (see Table 1.1  9  for terminology and stages) is more difficult to ascertain. Data for kidney failure (sometimes referred to as end-stage renal disease or ESRD) indicates that the prevalence of kidney failure is increasing by approximately 7% per annum (Canadian Organ Replacement Register (CORR), 2002) with an estimated 810 per million receiving dialysis or transplantation treatment in 2000. Data for the prevalence of Stages 1 to 4 CKD are not available, but estimates suggest that 600,000 to 1 million people in Canada have moderate or worse CKD (Stigant, Stevens, & Levin, 2003). The impact of individual chronic conditions is compounded by the high prevalence of multi-morbidity. The results of the study by Broemeling, Watson, and Black (2005) of chronic conditions and co-morbidity in adult residents registered with the British Columbia (BC) Medical Services Plan are startling. They found that 68.4% of persons over age 65 had one confirmed chronic condition. In addition, 79.4% of the 35.7% of their total study population with one confirmed chronic condition had other co-morbid chronic conditions, and of these 64% had 4 or more chronic conditions. Another Canadian report by Rapoport, Jacobs, Bell and Klarenbach (2004) indicates that health care utilization is not only higher for those with one or more chronic disease but that co-morbidity should be considered as a significant predictor of increased health care utilization. Their results demonstrated a 76% increase in the chance of high physician use for persons under 60 and a 51% increase for persons over 60 in the presence of an additional reported chronic disease. Multi-morbidity is common in individuals with CKD, DM, and CVD. People with DM and CVD (including hypertension) are at particular risk of developing kidney disease and CKD is associated with poor cardiovascular and other outcomes (Levin, 2003b; McCullough, 2003). That the primary kidney disease in over 30% of the 4,386 new dialysis  10  patients in 2000 was DM (Canadian Organ Replacement Register (CORR), 2002) is evidence of the first. That in a population of patients prior to dialysis Levin’s (2003b) results indicated that 35% of patients with pre-existing CVD developed a new event or worsening cardiac disease and 7.4% of patients with no pre-existing CVD developed new CVD during a mean follow-up period of 23 months is evidence of the second. Economic impact. Although authors differ on how to quantify the costs associated with chronic conditions and multi-morbidity they agree that the global economic cost is significant. For the purposes of this discussion, where possible, I focus on data from the Canadian context. Dawson, Gomes, Gerstein, Blanchard, and Kahle (2002) estimate that DM and associated complications in Canada cost US$4.76 to 5.23 billion in 1998. They note that the direct costs associated with DM were US$573 million and that associated CVD was the most expensive complication costing US$637 million. A report by the Public Health Agency of Canada (PHAC) in 1998, Economic Burden of Illness in Canada, estimated that CVD, as the most costly contributor to direct and indirect health costs in Canada (11.6% of total costs), cost $18.5 billion (p. 4). The Canadian Diabetes Association (CDA)(2005) estimates that the direct costs to the individual with DM are two to three times higher than for a person without DM and the costs of DM and related complications to the Canadian health care system at $13.2 billion dollars per annum. Nationally, the primary diagnosis in approximately 9% of all acute care hospital admissions between April 1, 2000 and March 31, 2001 was CKD and nearly 20% of admitted patients required dialysis during their hospitalization (Canadian Institute for Health Information (CIHI), 2003). Moreover, 14,567 patients were receiving dialysis at an average  11  cost of $50,000/patient/annum for dialysis treatment at the end of 2000 (Canadian Organ Replacement Register (CORR), 2002). The Context of Health Care Delivery The growing awareness of the prevalence and costs of chronic illness is driving consideration of chronic conditions in health care delivery planning and design. In developed countries, such as the United States of America (USA) and Canada, health care delivery planning and design for chronic disease(s) are aimed at reducing associated costs by (a) preventing primary and secondary disease, (b) reducing morbidity and mortality, and (c) reducing the cost of the care delivered. My research focuses on health care system navigation in the context of the Canadian health care system, and, more specifically, the health care system in the province of Ontario where I conducted my research. Therefore, it is important to understand the current Canadian health care delivery context, particularly as it pertains to people dealing with CKD living in Ontario. Although I expect this research to be of greatest relevance at the local or provincial level it may be informative to those in other health care contexts because of commonalities between health care systems in Western nations. Within a primarily Canadian context I consider (a) historical influences, including the influence of funding mechanisms and legislation on health care delivery and the influence of the Western biomedical model; (b) health care delivery system fragmentation; and (c) current trends in changes to health care delivery systems across Canada. Historical influences. In Canada there are similarities in health care delivery between provinces largely due to federal legislation and to funding mechanisms for health care. The delivery of health care  12  in Canada is the responsibility of the provinces and territories, as established by the Constitution Act of 1867, with funding shared between federal and provincial governments. . Since the turn of the century some important, potentially far-reaching commitments to health care renewal have been made at the meetings between Canada’s provincial and territorial premiers and Prime Minister (First Ministers). However, though policy may be set nationally, provincial/territorial enactment leads to differences in adoption. The Constitution Act of 1867 was replaced by the 1957 Hospital Insurance and Diagnostic Services (HIDS) Act and the 1968 Medical Care Act both of which contributed to the fact that by 1971 all 10 provinces had some form of medical and hospital insurance program (Iglehart, 2000). In the latter half of the 20th century the HIDS and Medical Care Acts were replaced by the Canada Health Act (1984), confirming the Canadians’ commitment to a healthcare system that adhered to the five funding criteria of the Medical Care Act (Iglehart, 2000). These funding criteria, (a) public administration, (b) comprehensiveness, (c) universality, (d) portability, and (e) accessibility, are commonly regarded as the foundational principles of what is now known as Medicare. Their importance to Canadians was reaffirmed by Romanow (2002) in the report of the Commission on the Future of Health Care in Canada. The Canadian federal funding mechanism for health care is the same for all provinces and is linked to these principles ensuring universally available and publicly funded medical and hospital care albeit that there is provincial control of health care funding. It is important to note that all the above legislation adheres to a system of public payment for private physician practice, otherwise known as fee-for-service (FFS) (Hutchison, Abelson, & Lavis, 2001). The adherence to the FFS model is evident in the exclusion of primary health  13  care from health care system reform through the exclusion of physician funding from the devolution of responsibilities for funding and health care service delivery to regional governance structures (Hutchison et al., 2001). Nationally and internationally, especially in health care systems of Western nations, there are similarities across health care delivery contexts. These similarities stem from historical influences on health care delivery. The Western biomedical model has been particularly influential leading to a number of common features across the health care systems of Western nations. For example, health care delivery models dominated by medicine and physicians, and a focus on diseases or body systems rather than people, and on diagnosis and treatment of acute medical problems. These foci often lead to disjointed care for individual patients. In Canada this influence is apparent in the language of the Canada Health Act (1984) and the legislative focus on ensuring care provided by hospitals and physicians. Wide-spread adherence to the biomedical model also supports the influential position of physician groups as regards strategic planning and decision-making about health care delivery. Health care delivery fragmentation. In addition to these historical influences, the fragmented nature of the health care delivery system is increasingly recognized as problematic in Canada (Romanow, 2002) and the USA (G. F. Anderson, 2003; Norris et al., 2003). Romanow noted that individuals must frequently “find their [own] way through a maze of services and providers to get the best information and the full range of services they might need” (p. 122). Fragmented care may also be associated with increased costs due to duplication of tests and consultations, and inadequate care leading to increased care needs. In addition, Romanow commented on the  14  lack of integration of care between specialists caring for individuals with the same chronic illness and between different levels of care such as community and acute care. In Ontario 45% of respondents to the 2003 poll by Leger Marketing indicated that finding their way through the health care system and accessing available services was more daunting than the disease itself (GlaxoSmithKline Inc., 2004). Trends in system redesign. In keeping with a global trend to try to protect and improve services while reducing the costs of health care delivery, Canadian provinces and territories have engaged in significant health care restructuring over the last decade. Ongoing system changes present both opportunities for enhancing care delivery and challenges related to the increasingly complicated context in which to understand the intended and unintended outcomes of care delivery for people with chronic conditions. There are some similarities in trends in Canadian health care delivery system redesign. Across a number of provinces there is a move towards (a) regional rather than provincial control of health care delivery and funding, (b) implementation of strategies to improve integration of care across the continuum, (c) a move away from individual hospital boards towards hospital networks, particularly in larger urban centres, and (d) adoption of disease management models. Recognition of the need to improve how care is currently delivered is evident in the growing body of literature about CDM in the USA (G. F. Anderson, 2003; Norris et al., 2003; Radzwill, 2002; Rothman & Wagner, 2003). With increasing medical specialization there has also been a trend towards program management as a means to improve continuity of care for specific patient populations. In Canada too there is an increasing interest in  15  managing the care of specific populations of patients using means such as CDM and program management. Program management examples include CKD programs and CVD programs aimed at provision of disease-specific care across the disease trajectory. Many of these programs incorporate strategies like case managers, liaison nurses, navigators, and protocoldriven multi-disciplinary clinics. Disease management approaches are also used in Canada. The PRIISMETM program (GlaxoSmithKline Inc., 2004), a public-private partnership with initiatives in Quebec and Ontario, is one example. The intent with the program is to improve the consistency and integration of care for patients with chronic conditions through personalized education for patients and education for health care professionals based on evidence-based clinical guidelines. In 2004 five health care sites in Ontario implemented the PRIISMETM program. The chronic conditions targeted by the program are asthma, DM, and chronic obstructive pulmonary disease (COPD). I note that PRIISMETM program too focuses on single chronic conditions. Problem Statement The provision of care for patients with chronic conditions and multi-morbidity presents a significant challenge and opportunity in the context of current health care delivery systems. Although there is a substantial body of knowledge about the experience of patients dealing with chronic conditions less is understood about health care system navigation for patients dealing with chronic conditions. Even less is understood about how patients dealing with multi-morbidity experience navigating the health care system. Knowledge about health care system navigation from the perspective of patients dealing with multi-morbidity offers the potential to inform policy processes about health care system design.  16  I came to this research from a background of clinical nursing practice, primarily in nephrology, and professional practice development for a large health care organization. In my experience consumers seldom have a voice in policy decisions about health care system design. Moreover, it is clear that, given the rapid pace of developments in technology and biomedical science and the rising costs associated with health care, particularly associated with multi-morbidity, we need to respond to calls to do things differently in order to maintain and improve quality of care. It is my belief that patients dealing with multi-morbidity can provide valuable insights into how this might be done. Purpose My intent in undertaking this research was to increase the body of knowledge specifically about how patients living with multi-morbidity navigate the health care system to obtain care they or their health care providers perceive to be necessary. Therefore I proposed to examine health care navigation from the perspective of patients dealing with multiple coexisting chronic conditions. In the study I focused on patients dealing with CKD and the two most common co-existing chronic conditions affecting patients with CKD, that is, DM and CVD. I chose these chronic conditions as they are illustrative of complex chronic conditions that often coexist and that affect people from across the lifespan and necessitate multiple and varied contacts with the health care system. I anticipate that the findings from this research will increase the ability of health care providers (including nurses, physicians, and other allied health providers, such as dieticians and social workers) to assess patient’ needs and tailor individual patient care. Policy and decision-makers will be able to use this knowledge to increase their understanding of what impedes and assists patients dealing with multi-morbidity to access care and ensure  17  continuity. This increased understanding may assist them in making decisions about ongoing health care system changes and reform that will improve care delivery to people with multiple, co-existing chronic conditions. Research Questions My purpose in undertaking this research was to increase knowledge about patients’, specifically those dealing with multi-morbidity, experiences of health care system navigation and to identify core principles for possible consideration in health care redesign. Therefore, the questions guiding my research were: 1. What happens to patients dealing with multi-morbidity in navigating the health care system? 2. What perceptions exist among patients dealing with multi-morbidity about what ought to happen? 3. What core principles can be identified from consumer perspectives for consideration in health care system redesign? Assumptions The assumptions underlying my research include: 1. The Ontario health care system, like many health care systems, is a complex construction comprising a number of different parts. 2. The different parts of the health care system require understanding of their existence and how they fit together in order for people to access them. 3. People who have experienced and reflected on the health care system can provide a particular perspective on health care system navigation. 4. Although every patient will have a unique perspective it is possible to identify trends,  18  themes, and patterns among these perspectives. 5. There is increasing recognition of the value of the consumer perspective. 6. The consumer perspective may provide new information about health care system navigation for consumers dealing with multi-morbidity that may be informative to policy processes. Summary This thesis is organized in six chapters. Each chapter covers a sequential phase of the research and the thesis as a whole provides an audit trail for the study. In this first chapter I briefly considered some of the issues associated with the current discourse about chronic conditions and health care delivery, explored the health care delivery context, and introduced my study. The next chapter provides a more detailed literature review elaborating on select aspects of the background to the study presented in this introductory chapter. The literature review is followed by a detailed exposition of the research method in chapter 3. The research findings are presented in Chapter 4 and discussed in Chapter 5. The thesis concludes with a brief summary of the study and presentation of the key conclusions and some implications for consideration.  19  Table 1.1 Terminology and Stages of Chronic Kidney Disease Stage  Description  _  At increased risk  GFR1, ml/min per 1.73 m2 60 (with chronic kidney disease risk factors)  1  Kidney damage with normal or  90  increased GFR 2  Kidney damage with mild  60-89  decreased GFR 3  Moderately decreased GFR  30-59  4  Severely decreased GFR  15-29  5  Kidney Failure  < 15 (or dialysis)  Adapted from: Levey et al. (2003b) National Kidney Foundation practice guidelines for chronic kidney disease: Evaluation, classification, and stratification.  1  GFR = glomerular filtration rate  20  CHAPTER TWO: REVIEW OF THE LITERATURE Introduction In this literature review I build on the background provided earlier by providing a more substantial review of the body of literature related to my research topic. As I noted in the problem statement there is little theoretical or empirical knowledge directly pertaining to the phenomenon of health care system navigation from the perspective of patients with multimorbidity. My intent in reviewing the existing body of knowledge before starting my research in January 2006 was to contextualize my research. This literature review also provided a preliminary sensitizing framework to guide my reflection during study design, data collection, and data analysis. Therefore, in this literature review I explored the empirical and theoretical literature pertaining to the intersection between multiple, co-existing chronic conditions and health care delivery. The review is divided into four general sections: defining chronic conditions, the scope of the problem, care delivery strategies, and the patient perspective. The primary literature source for this review was computer searches of electronic databases, such as CINAHL, MEDLINE, and PubMed. These searches were augmented by exploring other electronic sources and doing hand searches of the literature. Search terms included chronic disease, chronic illness, experience, co-morbidity, navigation, access, and continuity of care. I used this broad literature search strategy to increase the possibility of identifying pertinent literature published prior to 2006 with the intent to orient the reader to this body of literature by reviewing the major themes and trends within it. Literature germane to my completed research, including that published since 2006, is included in the discussion chapter. All searches were restricted to literature published in English covering topics related  21  to adults over the age of 18 with chronic physical conditions (the foci of the proposed research); literature related to mental conditions was excluded. Defining Chronic Conditions Until the middle of the 20th century many conditions that are now experienced as chronic were experienced as acute, and in many instances life-threatening or terminal. Some examples are Type I DM, CKD, and communicable diseases like tuberculosis (TB). During the 20th century advances in technology and science enabled health care professionals to provide better treatments and increase patient survival. Canada was at the forefront of some of these innovations in care, for example, the discovery and use of insulin to treat DM in 1922, and the introduction of renal replacement therapy (RRT) for kidney failure in the form of hemodialysis (HD) and peritoneal dialysis (PD) in the 1960s. Innovations for managing previously acute conditions continue and these innovations are reflected in the increased survival of many people living with communicable conditions like TB and HIV/AIDS. In response, the WHO has expanded the definition of what constitutes a chronic condition to include not only non-communicable conditions (e.g., DM), but also persistent communicable conditions (e.g., TB), long-term mental disorders (e.g., depression), and ongoing physical or structural impairments (e.g., visual impairment and amputation). Over the last decade there has been increasing notice given to the issue of chronic conditions by individuals, concerned groups of consumers, and non-government and government organizations. This increased attention stems from several related issues. One, the perception of the prevalence of chronic conditions is altered in the context of a more inclusive definition of chronic conditions such as that proposed by the WHO. Two, improved surveillance has led to a growing awareness of the scope of the problem presented by chronic  22  conditions. Three, expanding understanding of risk factors for chronic conditions and complications (e.g., the links between obesity and Type II DM and CVD, or DM and CKD, and so on) raises awareness of the potential for prevention and health promotion. There has been rapid growth in the number of organizations focused on chronic conditions around the world ranging from consumer advocacy groups (e.g., The Kidney Foundation of Canada [KFOC] and Chronic Disease Prevention Alliance of Canada [CDPAC]) to organizations affiliated with health care systems (e.g., The Change Foundation, and the Centre for Chronic Disease Prevention and Control [CCDPC] of PHAC). Research into chronic conditions has expanded dramatically in the last quarter of a century contributing to a substantial knowledge base about chronic conditions from different perspectives (e.g., the patient and family experience of living with chronic conditions, epidemiology, management strategies, etc.). Ongoing reflection about what is known, and the gaps and inconsistencies in this knowledge promotes further research aimed at refining and expanding our knowledge about the complex issues related to chronic conditions. Scope of the Problem There is a growing body of descriptive, largely epidemiological, literature about the nature and scope of the problem presented by chronic conditions and strategies to ameliorate the problem. This literature includes documents from a number of sources including government reports, agencies such as the WHO, peer-reviewed journals, and groups with an interest in the issue of care delivery for those with chronic conditions. Some of the key features of this literature include (a) the increasing prevalence of chronic conditions, and coexisting chronic conditions; (b) the direct and indirect costs associated with chronic conditions; and (c) the need to change how care is delivered in the context of chronic  23  conditions. In support of the need for and relevance of my research, I reviewed recent key documents from Canadian and international sources. I draw particular attention to aspects of these documents that deal with or are pertinent to the issue of multi-morbidity and health care system navigation. The rising prevalence of chronic conditions and associated health care costs has received increasing attention over the last ten years. As previously noted, estimating the prevalence of chronic conditions is difficult due to a lack of standard measurement criteria (Fortin, Bravo, Hudon, Vanasse, & Lapointe, 2005). Still, studies such as that by Hoffman, Rice, and Sung (1996), using 1987 data from the National Medical Expenditure Survey in the USA to determine the prevalence of chronic conditions and related costs, illuminate the potential scope of the problem. These authors point out the potential impact of an aging population on the prevalence of chronic conditions; in their study 88% of persons over age 65 had one chronic condition. In addition, they note a more than 3 fold increase in per capita health care costs for people with one chronic condition over the costs for people without a chronic condition, and a 2 ½ fold increase in per capita health care costs for people with more than one chronic condition over those with only one. Though the data they used are now 20 years old, the issues raised by Hoffman et al. are, if anything, more relevant as the population continues to age. I have a particular interest and a strong clinical background in the substantive area of CKD. As a result, CKD is a chronic condition that I am familiar with as regards the common features of the trajectory of the disease, the trajectory of treatment(s), and typical health care delivery systems. In addition, CKD is an excellent example of a chronic condition that poses significant challenges for health care delivery systems due to the costs associated with  24  treating kidney failure. For that reason, I selected CKD as the index condition for my research. However, my focus in this research was less specifically on CKD than on the intersections and interactions between two or more major chronic conditions and how this affects patient navigation through the health care system. For the purposes of this study I chose to specifically include DM and CVD as co-occurring conditions. Each of these conditions, taken in isolation of the others, is a major chronic condition, as each is potentially life-threatening if not managed appropriately. As mentioned previously, DM and CVD are often inter-connected with CKD. I consider the scope and nature of the problem of chronic conditions further with reference to these three specifically chosen chronic conditions, that is, CKD, DM, and CVD. In both the USA and Canada dialysis treatment for kidney failure, an otherwise fatal condition, is universally funded. Kidney transplantation is considerably cheaper than dialysis, but there is a shortage of donor organs and the demand far exceeds supply (Canadian Institute for Health Information (CIHI), 2002). In Canada, there has been dramatic growth in the numbers of people receiving chronic dialysis since 1990. In 2000, 60% more people started dialysis than in 1991 (Canadian Institute for Health Information (CIHI), 2002) representing an increase of approximately 7% per annum in the incidence of kidney failure (Canadian Organ Replacement Register (CORR), 2002). Moreover, 38.5% of new patients on dialysis in 2001 were over 70 years of age and almost 70% of them had DM and/or CVD (Canadian Institute for Health Information (CIHI), 2002). Despite biomedical advances since the inception of dialysis in the 1960s the outcomes for patients on dialysis remain poor; the survival of patients 1990 to 1999 in Canada was less than 50% after five years treatment  25  (CIHI Insites, 2001); moreover, patients who died were more likely to have DM and/or CVD when they started dialysis treatment (Canadian Institute for Health Information (CIHI), 2002). Accordingly there is growing interest in primary prevention of CKD in patients with CVD and/or DM, and early detection, prevention or slowing of CKD progression in patients with Stages 1 to 4 CKD. The problem of co-existing chronic conditions is becoming a more common topic in the literature. A review by Gijsen et al. (2001) of co-morbidity studies published between 1993 and 1997 provides some interesting insights into what is known about somatic disease co-morbidity. The index disease studied in almost 60% of the 82 studies reviewed was either CVD (48%) or DM (11%). Based on their review findings, Gijsen et al. note that “patients with comorbidity had a higher risk of dying, a poorer functional status or quality of life and greater use of health services” (p. 671). Furthermore, they note that there are few standard guidelines for treatment of patients with co-morbidity. They conclude that health care providers should be alert to the presence of co-existing disease and the possible synergistic or dampening effects of co-morbidity. They also suggest that continuity of care, particularly coordination between health care providers, is an important factor in providing quality care for patients with co-morbidity. I note that the majority of the studies included in the review by Gijsen et al. had study populations with mean ages of over 60 years. Given the prevalence of chronic conditions in the elderly an interest in the scope of the problem in this population seems reasonable, especially in developed countries with aging populations. Wolff, Starfield, and Anderson (2002) explored the prevalence, expenditures, rate of hospitalizations, and frequency of preventable complications of chronic conditions in American Medicare patients over 65 years of age. They used a 5% sample of  26  paid claims in 1999 to obtain a nationally representative sample. They found that 82% of the sample had one or more chronic conditions; older and female participants were more likely to have chronic conditions. Multi-morbidity was common  65% of participants had 2 or more  types of chronic conditions. They also note that 95% of Medicare expenditures were accounted for by the two thirds of participants with 2 or more chronic conditions. Wolff et al. emphasize the potential role for preventative primary health care, noting that after adjustment for age and sex the risk for hospitalization for a preventable condition was increased 99 times for participants with 4 or more chronic conditions. They note that 74% of participants with kidney disease as the major diagnostic category had four or more chronic conditions by comparison to 41% of participants with endocrine disease as the major diagnostic category. Like Gijsen et al. (2001) these authors stress the importance of coordinating care amongst providers for quality of care for those with multi-morbidity. They also comment on the need to develop protocols for treatment that take into account multi-morbidity. In Canada multi-morbidity is also a problem. The population prevalence of DM is estimated at only 5% (Leiter et al., 2001) but the potential impact of DM on the prevalence of kidney disease is significant. Estimates suggest that 33-45% of patients with Type I DM and 15-25% of patients with Type II DM have kidney disease (Simeon & Bakris, 1997). Although the incidence of kidney disease is lower for Type II DM, because Type II DM accounts for 90% of all cases of DM in Canada (Canadian Diabetes Association, 2005) it is a major cause of kidney disease. Patients with DM are also at greater risk of developing CVD (Nesto, 2004), as are patients with CKD (Levin, 2003b). Dawson et al. (2002) found CVD to be the major contributor to the direct costs of DM and the CDA estimates that 80% of the mortality in people with DM is caused by heart disease or stroke (Canadian Diabetes  27  Association, 2005). The epidemiological evidence presented here points toward the importance of considering multi-morbidity in health care delivery. There is international awareness that health care delivery models oriented towards acute care are neither effective nor efficient to provide care to those with chronic conditions (Norris et al., 2003; Williams & Botti, 2002; World Health Organization, 2002, 2005; Yach et al., 2004). There is recognition that the rising costs associated with health care do not always correspond with maintenance or improvement in the health of the population. This has been recognized in a number of recent Canadian reports, such as the final report of the Commission on the Future of Health Care in Canada (Romanow, 2002), and the final report of the Standing Senate Committee on Social Affairs, Science, and Technology (2002). Internationally and in Canada, alternate care delivery models and strategies to address the problems presented by chronic conditions are receiving increasing attention. Care Delivery Strategies The preceding section of this literature review lays out the scope of the problem of chronic conditions like CKD, and chronic conditions such as DM and CVD that commonly co-exist in patients with CKD. With the recognition of the scope of the problem a need has been identified to improve the care delivered and the outcomes for patients with chronic conditions. The need to reorient the health care system away from acute care towards meeting the needs of those living with chronic conditions, identified by Hoffman, Rice, and Sung in 1996, has become a recurring theme in the literature. There is a burgeoning body of literature about strategies to address this need that can be classified under the general topic of CDM (Epping-Jordan, 2005; Epping-Jordan, Pruitt, Bengoa, & Wagner, 2004; Norris et al.,  28  2003; Ouwens, Wollersheim, Hermens, Hulscher, & Grol, 2005; Radzwill, 2002; Wagner, 1998, 2001; Wagner et al., 2001; Wagner, Davis, Schaefer, Von Korff, & Austin, 1999). Chronic disease management is a term used to describe a wide range of approaches to organizing care delivery for people with chronic conditions. A key feature of these approaches is intent to integrate care and improve access to and continuity of care for people with chronic conditions. Recent publications by Sparbel and Anderson (2000a; 2000b) and Sturmberg (2003) about the concept of continuity of care conclude that it is a complex construct consisting of multiple, interrelated concepts. The integrated literature review by Sparbel and Anderson (2000a; 2000b) of 38 research publications between 1990 and 1995 focused on continuity of care and discharge. Although these authors conclude that there is no consensus about the conceptual definition of continuity of care they identify some similarities across the literature they reviewed. In the 7 articles providing definitions, continuity of care is consistently defined in terms of “a process that occurs over time, requires coordination, encompasses multiple people and settings, and includes a transfer of information” (Sparbel & Anderson, 2000b, p. 20). Sparbel and Anderson note that only one researcher included the patient as an active part of this process, rather the focus was on organizations and care providers. Factors that were identified as affecting continuity of care included communication and system issues. Inadequate communication within organizations or between organizations, or between patient or family and care providers negatively affected continuity of care. Sparbel and Anderson also identify system factors, such as coordination or networking processes; organizational commitment to continuity of care; sufficient funds for appropriate care delivery; adequate staffing and support from staff for continuity of care; clear professional roles and adequate  29  educational preparation and knowledge; consistent staff; adequate resources and knowledge of available resources; and adequate assessment of patients needs, as important in promoting continuity of care. In a more recent publication Sturmberg (2003) confirms the views of the previous authors. He notes that, despite systematic exploration of the concept of continuity of care since 1975, there was as yet no consistent definition of continuity of care or agreement about the clinical importance of continuity of care. Sturmberg proposes a systems-based model of continuity of care describing continuity of care as an outcome of ongoing complex interactions within the medical care system. These interactions occur between the health care context (i.e., the health care system and local community), the doctor, the patient, the consultation, and the outcomes of the consultation (p. 138). Despite or perhaps because of the complexities presented by the construct of continuity of care many CDM approaches have been described. These approaches include case management, program management, managed care, initiatives like the previously mentioned PRIISMETM initiative, the Chronic Care Model (CCM) described by Wagner and his colleagues at the Group Health Cooperative’s MacColl Institute for Healthcare Innovations in Seattle (see Figure 2.1), and the Innovative Care for Chronic Conditions (ICCC) framework described by the WHO in 2002 (see Figure 2.2). I focus my discussion on two particularly well-described CDM approaches, the CCM and the ICCC framework, as providing good examples of some of the features of CDM programs that are intended to improve access to and continuity of care for people with chronic conditions. Then I consider primary health care as a key component of many strategies to integrate care delivery for chronic conditions.  30  Chronic Care Model The CCM is an approach to CDM that has received considerable attention since its proposal in 1998 (Wagner, 1998) as a response to an identified need for comprehensive, integrated, patient-centred chronic illness care (Wagner, Austin, & Von Korff, 1996b). These authors noted that many interventions reported in the literature focused on individual elements of care; for example, on patient education activities, education programs for providers, and so on. They also identified intervention programs reported in the literature that demonstrated improved outcomes for people with chronic conditions (Wagner, Austin, & Von Korff, 1996a; Wagner et al., 1996b). The CCM was based on characteristics identified from these programs. The key components of the CCM as described by Wagner in 1998 are evidence-based, planned care supported by (a) support for prevention and self-management; (b) an expert system including education for providers, explicit plans or protocols to support decision-making, and consultation; (c) practice redesign taking into account a need for increased patient contact time, enhanced resources, and more follow-up; and (d) clinical information systems to support reminders, track outcomes, provide feedback, and enable care planning. Over the course of the year following the publication of the CCM literature, synthesis and expert review was used to further develop the model. A key feature of the revised model was contextualizing CDM program(s) within the framework of the larger community and health care system, emphasizing the need for appropriate resources, support, and linkages. The CCM was then used to guide a survey and analysis of 72 CDM programs nominated by experts as innovative and effective (Wagner et al., 1999). Finding that many of these programs were limited in scope and lacked a comprehensive approach to chronic illness care,  31  the research group recommended using the CCM to guide future planning and refinement of CDM programs. Under the auspices of the ‘Improving Chronic Illness Care’ (ICIC) program funded by The Robert Wood Johnson Foundation, the MacColl Institute began testing the CCM in over 100 health care organizations across the USA (Bodenheimer, Wagner, & Grumbach, 2002a, 2002b; Wagner et al., 2001). The ICIC continues to be involved in implementing and evaluating CDM programs using the CCM and in study of the CCM. Based on testing and published advances in the field of care for chronic conditions the CCM was updated in 2003 to include 5 new themes (Improving Chronic Illness Care (ICIC), 2005). The five new themes are (a) patient care related policy advocacy, (b) effective management of errors and issues affecting quality of care, (c) intra- and inter-organization agreements to enable coordination of care, (d) care or case management for patients with more complex problems, and (e) appropriate care for patients of diverse cultures and languages (Improving Chronic Illness Care (ICIC)). These themes together with those included in the original description of the CCM are all oriented towards improving chronic illness care. Many of them centre on the issue of improved access and continuity of care. Innovative Care for Chronic Conditions Framework The CCM has also attracted the attention of international health care organizations, such as the WHO. The common issues related to care delivery for people with chronic conditions identified by the WHO reflect those identified by Hoffman, Rice and Sung (1996), Wagner and his colleagues, and others. The WHO has proposed the use of a framework to integrate the basic parts of the care delivery system required to deliver high quality care for people with chronic conditions. This framework is an expansion of the CCM (Epping-Jordan, 2005; Epping-Jordan et al., 2004; World Health Organization, 2002).  32  The common issues related to care delivery for people with chronic conditions highlighted by the WHO occur at three levels of health care delivery: policy (macro), the health care organization and community (meso), and patient interaction (micro). The WHO suggests that there is iterative feedback between these levels and that effective function within and between each level is required for effective and efficient patient care especially for those with chronic conditions. The WHO notes significant problems at every level of many health care systems created and perpetuated by an outdated allegiance to care models based around acute, episodic conditions. They note that change needs to occur at every level (World Health Organization, 2002). The changes suggested by the WHO to address these issues include (a) increase attention to patient behaviors and health care worker communications, (b) coordinate care for chronic conditions based on scientific evidence, (c) integrate community resources, (d) streamline services, (e) enhance the skills and knowledge of health care workers, (f) focus on prevention, and (g) improve information tracking systems to enable planning of care for predictable complications of chronic conditions (World Health Organization, 2002). The WHO makes a clear link between these changes and improved access to and continuity of care for people with chronic conditions. The Innovative Care for Chronic Conditions: Building Blocks for Action report (World Health Organization, 2002) speaks directly to the characteristics required in health care systems that will meet the care needs of people with chronic conditions. These characteristics are described in the ICCC framework (Epping-Jordan, 2005; Epping-Jordan et al., 2004). This framework was developed in collaboration with the developers of the CCM. The ICCC expands the CCM by encompassing the model within a broader policy  33  environment (World Health Organization, 2002). The WHO describes this macro level of policy as “responsible for legislation, leadership, policy integration, partnerships, financing, and allocation of human resources that allow communities and health care organizations to help patients and families with chronic conditions” (World Health Organization, 2002, p. 43). Primary Health Care Primary health care includes population-level health promotion and prevention activities as well as the health promotion, prevention, and treatment received by patients from primary health care providers. In the North American context primary health care providers are most often understood to be a physician, commonly a general practitioner (GP) or family physician, although other health care providers, such as nurse practitioners, may also provide primary health care. Primary health care is receiving renewed interest as health care providers and policy-and decision-makers wrestle with improving health care delivery for those with chronic conditions. Primary health care providers are being looked to as the key to improving the coordination and continuity of care. Primary health care providers are well situated to provide care to patients with chronic conditions because of their generalist education and clinical experience (Bodenheimer et al., 2002a, 2002b; Rothman & Wagner, 2003; Stille, Jerant, Bell, Meltzer, & Elmore, 2005), particularly for patients with multi-morbidity who require comprehensive, integrated care across conditions (Grumbach, 2003; Starfield et al., 2003). Though specialist care may be more appropriate for patients who are at the more severe end of the trajectory of their chronic condition and require more complex treatment, primary health care providers are well-suited to care for those with less severe problems and to coordinating care across providers for more complex patients (Rothman & Wagner, 2003). According to Rothman and  34  Wagner, and Stille et al., a key role of the primary health care provider is the coordination of care across clinicians, settings, and diseases. The potential of primary health care for chronic conditions is impeded by the influence of the health care system orientation towards acute, episodic care. The problem lies not necessarily in the provider but in the structure or design of the care delivery environment. For example, clinic appointment schedules that do not allow sufficient time for consultation in the context of chronic conditions. Several authors (Bodenheimer et al., 2002a, 2002b; Rothman & Wagner, 2003) make a cogent argument for the use of models such as the CCM in changing the practice environment to make it more appropriate to the care of patients with chronic conditions. Rothman and Wagner (2003) reviewed studies comparing the quality of care of specialists and primary health care providers for patients with chronic conditions. They note that primary health care providers, particularly newer graduates, may be better educated about providing support for self-management than specialists. They also identify that in isolation neither primary health care nor specialist care may be adequate and that integrating specialist care into primary health care teams may improve patient care. As in the literature surrounding the development of the CCM, these authors note that the structure of the practice may be more important than the physician provider and the apposite use of multidisciplinary teams is linked to improved outcomes. A review of systematic reviews of integrated programs for patients with chronic conditions to investigate definitions, components, and effects of such programs, appears to support this observation by Rothman and Wagner (Ouwens et al., 2005). Ouwens et al. identify disease management as the most common strategy used in programs included in the  35  reviews, but they chose the term integrated care as more patient-centred. They note the diversity in interventions, patient and care provider populations, components of care, and outcomes measures used in the reviews. Despite this diversity, integrated programs appear to have positive effects on “hospital utilization, quality of life, functional health, patient satisfaction, and process outcomes, such as adherence to guidelines and compliance with medication” (p. 143). The Research Context In the Canadian context, the federal and provincial governments are increasingly recognizing the impact of chronic conditions and the need to reorient health care delivery to meet the needs of patients and contain or reduce health care costs (Romanow, 2002; Tuohy, 2002). The federal government launched the Primary Health Care Transition Fund (PHCTF), an $800 million Health Canada initiative, to facilitate systemic, long-term renewal of primary health care across Canada from 2000 to 2006. This funding was split 30/70 to support federal and provincial health care reform initiatives. The CCM is attracting interest and has been used by a number of organizations across Canada to guide development of health care systems for people with chronic conditions. Some examples include the adoption in BC of an expanded version of the CCM, developed in collaboration with ICIC by the BC Ministry of Health Services; the Chronic Disease Management (CDM) Initiative of the Calgary Health Region (Calgary Health Region, n.d.); and the implementation of the Ontario Family Health Network by the Ontario Ministry of Health and Long-Term Care (Miller, Recsky, & Armstrong, 2004). In Ontario, reports by The Change Foundation, an organization incorporated by the Ontario Hospital Association in 1995 to promote, support, and improve health and health  36  care delivery, support the need for and feasibility of CDM initiatives (The Change Foundation, 2002; Wong, Gilbert, & Kilburn, 2004). Features characteristic of CDM models, like the CCM and ICCC framework, are also increasingly apparent in features of existing health care delivery systems for patients with CKD, DM, and CVD. The development of evidence-based clinical guidelines and protocols for clinical management is one illustration of this. For example, the CDA published clinical practice guidelines in 2003 (Canadian Diabetes Association Clinical Practice Guidelines Expert Committee, 2003) and the American College of Cardiology Foundation has published several clinical practice guidelines pertaining to CVD (n.d.). As regards CKD, recommendations for the management of elevated serum creatinine levels were approved by the Canadian Society of Nephrology and the College of Physicians of Canada (Mendelssohn et al., 1999). In the USA The Kidney Disease Outcomes Quality Initiative (KDOQI) has published guidelines for hemo- and peritoneal dialysis adequacy, the management of anemia, CVD, hypertension, bone metabolism and disease, and others. At the time of this review guidelines for the management of DM and CKD (National Kidney Foundation KDOQI, 2007) were under development. Alongside this focus on trying to improve dialysis outcomes using evidence-based guidelines, there has been increasing emphasis on early identification and prevention of progression and complications due to CKD (Levey et al., 2003; Levin et al., 1997; Pereira, 2000; Valderrábano, Golper, Muirhead, Ritz, & Levin, 2001). Recent consensus around terminology (Hsu & Chertow, 2000; Levin, 2003a), evaluation, classification, and management (Levey et al., 2003)(see Table 1.1) will facilitate these efforts to improve care for patients with CKD in earlier stages.  37  Canada is leading the way as regards management of CKD in stages 1 to 4; clinics targeting this patient population have existed in Canada for over 20 years (Starzomski, 1986). The development of CKD clinics is supported by growing evidence of the efficacy and efficiency of such programs (Devins et al., 2000; Klang, Björvell, Berglund, Sunstedt, & Clyne, 1998; Levin et al., 1997) and the recognized need to try to reduce the number of people progressing to kidney failure and associated dialysis or transplantation (Nwankwo, Bello, & El Nahas, 2005). Approaches to care, models, and elements of care delivery vary widely, and the relationship between these and patient outcomes is not well-understood. Features of CKD clinics may include (a) multidisciplinary care, albeit that the combination of nursing, dietician, social worker, pharmacist, nephrologist, and so on may vary; (b) a focus on patient education and self-management; (c) care for common co-existing chronic conditions, like DM and CVD, with varying levels of integration with cardiology and endocrinology services; (d) evidence-based protocols or guidelines for care; and (e) some form of information system. Two examples of current research exploring the relationships between clinic characteristics and patient outcomes are the Baxter Healthcare Corporation’s Chronic Kidney Disease (CKD) Research Program with seven participating centres in the USA and Canada, and the Canadian Collaborative Group for the Prevention of Renal and Cardiovascular Endpoints Trial (CanPREVENT) study, an exclusively Canadian study. However, care delivery systems across Canada are still largely set up to care for acute conditions or single chronic conditions. Program management of chronic conditions like CKD and CVD is intended to facilitate administration and continuity of care for patients. However, in my experience, the links within and across programs are not always welldefined and this can hamper patient access and continuity of care. For example, clinics for  38  people with stages 1 to 4 CKD are often, although not always, part of larger kidney disease programs that may include sub-programs for HD, PD, transplantation, and acute care services for people with CKD. The links between such sub-programs and between programs for different conditions are often determined by pre-existing structures with origins in the evolution of acute and out-patient/ambulatory health care delivery. For instance, ambulatory/outpatient care is often separated from acute care by physical location and separate charting and records-management rather than an integrated information system (whether paper-based or electronic). Innovative strategies to address such structural issues often include the implementation of electronic information systems. One such system is the Patient Record/Registration and Outcome Management Information System (PROMIS) developed by the BC Renal Agency (BCPRA). This information system was developed in collaboration with clinicians for use by health care professionals in CKD programs across the province of BC. In Ontario, Humber River Regional Hospital in Toronto is one of 7 partners in the Baxter’s CKD research program. This program includes the implementation of Baxter’s electronic, paperless, patient information management system. This information system is intended to integrate “clinical data across the whole spectrum of care, over the life of the patient and [be] accessible to everyone on the treatment team”(Baxter Healthcare Corporation, n.d.). In 2005 the federal government provided $8-million in funding to the Western Health Information Collaborative (WHIC) to improve CDM and information systems in the four Western Canadian provinces. The collaborative will focus on DM, hypertension, and kidney disease (Canadian Healthcare Technology, 2005). However, in my experience, even such innovative strategies are not without challenges. For example,  39  duplicate charting and data entry may result from organizational requirements for patient records management, information security issues, or difficulties in linking the new system with existing data bases such as those of laboratories or hospitals. Other approaches to CDM include the use of multi-disciplinary clinics, such as those described earlier for CKD, and innovative programs that specifically take into account the integration of care for patients with multi-morbidity. For example, some multi-disciplinary CKD clinics include care providers from DM programs at the CKD clinic so that patients with CKD and DM can receive comprehensive care for both conditions at one clinic appointment. In Ontario, St. Michael’s Hospital, Toronto, has a multi-disciplinary Diabetes Comprehensive Care program to manage DM and its complications. This innovative clinic, by comparison with more conventional DM programs focusing on DM management and selfmanagement education, gives patients with DM access to a broad range of specialist care providers, including nephrology, within a single clinic. The influence of the FFS model of funding and the dominant biomedical model is apparent in the difficulties encountered by governments trying to change how primary health care is delivered. Hutchison, Abelson, and Lavis (2001) make some salient observations about primary health care in the context of Canada and Ontario. In Ontario several innovations have been attempted over the last 30 years including the introduction of alternative delivery models that incorporate health care providers other than physicians (e.g., Health Service Organizations and Community Health Centres [CHCs] in the late 1970s), the recognition of alternative primary health care providers (e.g., midwives in 1994 and nurse practitioners in 1998), and more recent primary health care reform pilot projects. Due to a perception that health service organizations and CHCs did not improve the quality of primary  40  health care or contain costs, despite the use of capitation funding and global funding respectively, there was little or no expansion to these programs after the early 1990s. In 2003, the Canadian Prime Minister, the Provincial Premiers, and the Territorial Leaders reached agreement on an action plan to improve Canadian public health care. In keeping with this commitment the Ontario government increased funding for primary health care services. In 2004 the Ontario Ministry of Health and Long-Term Care announced a plan to design and implement150 interdisciplinary family health teams (FHTs) by 2008 (Ontario Ministry of Health and Long-Term Care, 2004). The FHTs are intended to provide comprehensive patient-centred, primary health care including system navigation, expanded access, health promotion, and CDM and self-care programs. As of December 2005 some of the 52 FHTs and 17 FHT networks announced in April 2005 were starting to see new patients, an additional 31 FHTs were announced, and applications were invited for an additional 50 FHTs (Ontario Ministry of Health and Long-Term Care, 2005a). In addition, the Ontario Ministry of Health and Long-Term Care (2005b) announced $74.6 million in funding to add 22 new CHCs and 17 new satellite CHCs across the province and increase funding at existing CHCs for staffing and program enhancements. The Ministry of Health and Long-Term Care estimated that province-wide over 300,000 Ontarians were receiving care at the 54 existing CHCs and 10 satellite CHCs. Other projects being implemented across Ontario include the establishing of 14 Local Health Integration Networks (LHINs) in 2004. The LHINs are designed to plan, integrate, and fund local health services. Improving how patients navigate across the continuum of health care is a primary goal of the LHINs (Ontario Ministry of Health and Long-Term Care, n.d.).  41  Of particular interest in the context of this review is a recent paper from the Ontario Association of Community Care Access Centres (OACCAC) (2005) specifically exploring the issue of health care system navigation in Canada and Ontario. The Community Care Access Centres (CCACs) were formed in 1997 when local home care programs and facility placement services in Ontario were integrated into an organization to provide a single point of entry to long-term care placement and services, and health care information. The OACCAC position paper on addressing health system navigation notes that navigating the Ontario health care system presents challenges to clients in accessing providers. No evidence regarding the issue of navigation from the patient perspective is offered in this report. The OACCAC uses case management to assist clients with these navigation issues. It is hoped that improving the integration of increasingly complex health care services will remove some of the challenges presented by “system-wide weaknesses in the formal connections among service providers” (p. 4). Hutchison et al. (2001) suggest the innovation of projects currently being piloted in Ontario may be impeded by “tightly defined requirements for the organization, funding, and delivery of care” (p. 122) coupled with no requirement for interdisciplinary practice or an expanded nursing role. Indeed the new FHT composition is designed by communities and providers to address the health care needs of the local community (Ontario Ministry of Health and Long-Term Care, 2005a). Also, these authors identify that there is “little or conflicting evidence regarding patients’ assessments of continuity, comprehensiveness, coordination, technical quality, and interpersonal aspects of care” (p. 125). To what extent the concerns of these authors are borne out in the implementation of these projects remains to be seen.  42  Patient Perspective The large body of knowledge about chronic conditions, multi-morbidity, and care delivery strategies (viewed largely through the lens of those who do not have a chronic condition) is complemented by an equally substantial body of knowledge about chronic conditions from the perspective of those living with chronic conditions. There is a large body of theoretical and empirical knowledge, spanning several decades, related to the chronic illness experience; much of this knowledge is located in the disciplines of sociology, anthropology, public health, psychology, and nursing. I briefly summarize some important characteristics of this literature. Then I highlight those aspects of the body of literature that contribute to what we know about the patient experience of health care navigation, particularly for patients dealing with multi-morbidity, from the patient perspective. Thorne and Paterson (Thorne, 2000; Thorne & Paterson, 2000) highlight several features of the published qualitative research about chronic illness experience: these features include (a) a view of chronic illness as generic; (b) a failure to take into account contextual factors such as age, gender, ethnicity, and socioeconomic status; (c) a view of chronic illness as static; and (d) reliance on single interviews and retrospective memory. These authors suggest that researchers tend to focus on the commonalities in the chronic illness experience for individuals with the same chronic condition or individuals with different conditions within a single study reflecting a view of the experience of chronic illness as generic. In addition, they note there has been little research exploring variations in experience between different chronic conditions. From my own review of the chronic illness experience literature it seems that there is also little published research exploring the experience of individuals with more than one chronic condition, and still less research exploring the experience of co-  43  existing, chronic conditions (multi-morbidity). In my opinion, despite the identified shortcomings, this body of literature does provide important insights into some of the common features of the experiences of those living with chronic conditions and their experiences of navigating the health care system. Significance of Context Patients receive and manage their care within a context that includes the patient and their family situation and the health care delivery environment. Significant bodies of research by several authors (R. Anderson & Bury, 1988; Corbin & Strauss, 1988; Thorne, 1993) have identified the significance of context to the meaning of the chronic illness experience. These authors approached the study of the chronic illness experience from different disciplinary perspectives, namely, sociology, anthropology, and nursing. Their findings provide an important platform for beginning to understand how patients experience health care navigation. Researchers in sociology have made important contributions to what we know about the relationship between context and meaning in the chronic illness experience. In his review of research on the chronic illness experience reported in the sociology literature, Pierret (2003) suggests that Bury (1982) was perhaps the earliest researcher to identify the significance of context in chronic illness experience in his findings from a study of the experience of rheumatoid arthritis; context included the cultural system of medicine. Pierret credits Bury with linking context and meaning in chronic illness. Other sociologists have also contributed to what we understand about how patients experience chronic conditions and the health care system. Anderson and Bury’s (1988) book, Living With Chronic Illness: The Experience of Patients and Their Families, contributed further to our understanding of the  44  impact of chronic illness and the management of illness on the patient and family. These authors studied patient and family experience of a wide variety of chronic conditions including DM, heart attack, and renal failure. In their book they highlight some of the effects of chronic illness and illness management on patients and their families. Key aspects that are described as being significantly impacted by chronic illness are patient employment, personal identity, health care system use, and family life. Pierret attributes the notion that social structure is an integral part of the chronic illness experience to Anderson and Bury. In their book, Unending Work and Care: Managing Chronic Illness at Home (1988), Corbin, a nurse sociologist, and Strauss, a sociologist, describe the work done by couples to manage chronic illness at home. They used a grounded theory approach to analyze multiple interviews with sixty couples with a wide range of chronic illness conditions, including couples from different ethnic, socio-economic, and age groups; sexual orientations; and couples in which one or both partners had a chronic illness. Their findings echo and expand on those of Anderson and Bury. Corbin and Strauss note the tremendous complexity and variability in managing illness at home and the improbability of reducing this to simplistic diagrammatic form. They outline the complexities related to understanding and accommodating the overlapping trajectories of the physiological development of the illness and the work of managing the illness; this work is compounded by the impact of the illness and associated changes in the lives of patients and families. Corbin and Strauss note the importance of understanding the work that patients have to do to integrate the illness into their lives and their sense of who they are over time. Associated with this biographical work there is also the work required to manage the illness and the effect this has on the lives of the patient and their family. All of this work occurs in the broader context of social, political, and  45  economic conditions. Research by Thorne (1993) makes an important contribution, expanding what we understand about patient experience of chronic illness and, particularly, of the health care system and navigation. Like Anderson and Bury (1988) and Corbin and Strauss (1988), her findings emphasize several influential points along the trajectory of the chronic condition, for example, the onset and diagnosis of the chronic condition, emphasizing the social context in which the experience of the chronic illness trajectory occurs. From the unique perspective of a practice discipline, nursing, and informed by other disciplines like anthropology and sociology, Thorne focuses on the interplay between the patient experience of chronic illness, their relationships with health care providers, and their experiences of the health care system. The research findings presented by Thorne (1993) in Negotiating Health Care: The Social Context of Illness are unusual in the identification of the health care system as a significant part of the social context of chronic illness. She describes the encounters of patients and families in her study with the health care system as “a head-on collision” (p. 129). She identifies potential consequences of the complexity and bureaucracy of the organizational structure for patients as including failing to get the appropriate care, being taken advantage of for purposes of research or education, being vulnerable to medical errors or incompetence, and experiencing delays or difficulty in accessing care. She also describes the complexities of self-management (e.g., diet, medication, exercise) and “orchestrating coordinated services” (p. 43) in the context of chronic illness. Thorne (1993) also speaks specifically to the issue of patient relationships with health care providers and the importance attached to long term relationships and communication. Her findings also draw attention to the importance of communication in relationships with  46  health care providers, patients’ need for information to make sense of the experience, and the complexities of the health care system. Her findings point to potential problems such as prejudicial attitudes of professionals; power struggles between patients and professionals, many of these focused around the management of the chronic illness in an acute setting; and dehumanizing experiences, such as insensitivity, cruelty, and being treated as an object rather than a person. She notes the central role played by physicians because of their provision of primary health care and senior position in team decision-making. Thorne also identifies the significance patients’ ascribe to realizing that they and their health care professionals are part of a larger, constraining health care system and that, as experts in their own chronic illness, they need to take an active role. Part of this involves developing strategies to work with health care professionals, within the constraints of the health care system, to obtain the care they see as appropriate. Thorne (1993) notes that patients develop theories about health care to explain their experience. These theories included theories about health care politics (including issues related to “the bureaucratic structure of health care delivery, the social structure of professional authority, and the financial structure of health care reimbursement systems” (p. 159) and health care ideology (including the beliefs that “doctors know what is best for patients; … ‘regular’ medicine is superior to all other healing practices; and … medicine [is] a precise form of scientific enterprise” (p. 173)). Their analysis of the health care system helps patients and families “to refine their coping strategies and thereby navigate the troubled waters of health care more smoothly and certainly” (p. 183). Some of the common features of the impact of chronic illness on patients’ lives identified by the preceding authors (R. Anderson & Bury, 1988; Corbin & Strauss, 1988;  47  Thorne, 1993) are recurrent themes in the larger body of chronic illness experience literature. I shall use the literature specifically exploring the patient experience of living with CKD to illustrate. Several researchers note the intrusive nature of chronic conditions (Curtin, Bultman, Thomas-Hawkins, Walters, & Schatell, 2002; Devins et al., 1993a; Devins et al., 1993b; Gregory, Way, Hutchinson, Barret, & Parfrey, 1998; Rittmann, Northsea, Hausauer, Green, & Swanson, 1993) related to the work of accommodating intrusive medication regimens, dietary requirements, and physical symptoms (e.g. decreased mobility, pain, fatigue, sleeplessness, etc.). Authors also comment on how patients need to arrange their lives around the requirements of managing their illness, the effect on relationships with significant others, and the impact of chronic illness on employment (Devins, Binik, Hollomby, Barre, & Guttmann, 1981; Devins, Hunsley, Mandin, Taub, & Paul, 1998; Dimond, 1979; Gurklis & Menke, 1995). The emotional and psychological consequences (e.g., frustration, anxiety, and depression) of living with a chronic condition are also common findings (Devins, Beanlands, Mandin, & Paul, 1997; Devins et al., 1981; White & Grenyer, 1999). There is also a body of literature supporting the importance of the context in which the work is done by patients to manage CKD. For example, the conclusions drawn by Polaschek (2003) from his review of eight qualitative studies2 exploring the experience of  2  Rittman, M., Northsea, C., Hausauer, N., Green, C., & Swanson, L. (1993). Living with renal failure. ANNA Journal, 20(3), 327-332. Cohen, J. D. (1995). The experience of living on maintenance hemodialysis for 20 years and beyond: Impact on the patient and family. Unpublished doctoral dissertation, Union Graduate School, Health Psychology. Sloan, R. S. (1996). A hermeneutical study of the medical treatment decisions for end stage renal disease patients and their families. Unpublished doctoral dissertation, University of Kentucky. Nagle, L. (1998). The meaning of technology for people living on dialysis. Holistic Nursing Practice, 12(4), 7692. Lindqvist, R., Carlsson, M., & Sjoden, P. (2000). Perceived consequences of being a renal failure patient. Nephrology Nursing Journal, 27(3), 291-297.  48  living on dialysis from the patient perspective. He concludes that the patient’s perception of their experience is shaped by the characteristics of the care setting. He recommends that researchers exploring the patient experience should ensure that their research approach allows them to articulate the patient experience in the context of the care setting. Polaschek’s review supplements the limited findings of researchers in other qualitative studies of the patient experience of CKD as regards the health care context. For example, Gregory et al. (1998) comment on the importance of continuity and the role of the nurse; Price (1989) notes the value placed by patients on being heard by professionals; and Gregory et al., and Montemuro et al. (1994) highlight the significance of collaborative relationships and information-sharing in health care provider relationships with patients. The publications by Anderson and Bury (1988), Corbin and Strauss (1988), and Thorne (1993) all point towards the importance of understanding the health care system as part of the social context of chronic illness. It is intriguing that Pierret (2003) concluding his review of a substantial body of sociology research identifies social structure as “the problem to be analysed” (p. 17), but makes little or no mention of the health care system being part of social structure. There appears to have been little further research explicitly examining this topic and specifically no research examining the topic from the perspective of those with multi-morbidity. Nonetheless, there is knowledge about the patient experience of the health care system and navigation to be gleaned from the research into the patient experience of multi-morbidity.  Faber, S. (2000). An investigation of life with end stage renal disease: Sociocultural case studies analysis. CANNT, 10(3), 24-34. Curtin, R. B., & Mapes, D. L. (2001). Health care management strategies of long-term dialysis survivors. Nephrology Nursing Journal, 26(3), 385-394. Brunier, G. M., & McKeever, P. T. (1993). The impact of home dialysis on the family: A literature review. ANNA Journal, 20(6), 653-659.  49  Patient Experience of Multi-Morbidity As noted previously, there is a substantial body of literature about the consumer experience of individual chronic conditions of which the publications reviewed earlier represent a fraction. In contrast, the experience of multi-morbidity has received far less attention, despite evidence supporting the likelihood that the experiences of individuals dealing with multi-morbidity may be different from those dealing with a single chronic condition. For example, a recent systematic review of descriptive research (1990-2003) by Fortin et al. (2004) indicated an inverse relationship between multi-morbidity and quality of life in patients seen, or likely to be seen, in primary health care. Similarly, Gijsen et al.’s (2001) review of literature published between 1993 and 1997 suggests that as the number of chronic conditions increases (a) there is a rise in the level of disability, mortality, and the use of health services; and (b) the level of physical well-being and quality of life diminishes. Still, there is a small body of literature pertaining to the experience of multi-morbidity that augments what we know about patient navigation in the context of single chronic conditions by providing some insights into the patient experience and the experience of health care system navigation from the perspective of patients with multi-morbidity. The literature about the experience of multi-morbidity tends to focus on a particular population within the health care system or aspect of the consumer experience. This literature suggests that people with multiple chronic conditions share many of the experiences of those with a single chronic condition including the impact of disease on daily life, psychosocial issues, and family, and the significance of the health care delivery context. In my review of this literature, I emphasize the findings that may increase our understanding of the experience of health care system navigation in the context of multi-morbidity with specific reference,  50  where possible, to CKD, DM, and CVD. CKD and DM. Very few published studies were found exploring the patient experience of living with CKD and DM. King, Carroll, Newton, and Dornan (2002), and Ravenscroft (1999; 2005) explored the consumer experience of DM and CKD. King et al. (2002) studied the patient experience (N = 20) of adaptation to diabetic renal disease. Ravenscroft (1999; 2005) explored the patient perception (N = 7) of the experience of DM and kidney failure using interpretive description to guide study design and data analysis. The findings of both studies (King et al., 2002; Ravenscroft, 1999, 2005) confirm the relevance of what has been described about the experience of single chronic conditions for those with multi-morbidity. For example, both authors report the intrusion of chronic illness (e.g., diet and medication) on daily life, relationships with significant others, and employment. They also identify the use of positive thinking, or what King et al. term a “stoic outlook,” as a primary strategy in adapting to the experience of DM and CKD. Ravenscroft also reports that patients commented that kidney disease was more intrusive than DM, supporting the findings of reviews by Fortin (2004)and Gijsen (2001). Neither author focuses on the context of the chronic illness experience, but both have findings that add to our understanding. King et al. (2002) describe diabetic renal disease as changing the involvement of participants with the health care system and their relationships with doctors and other health care professionals. They note that diabetic renal disease made some patients more reliant on doctors but observe that even patients who indicated relinquishing control of some aspects of treatment to their doctors claimed responsibility for others. Similarly, Ravenscroft (1999;  51  2005) found interactions with health care providers to be significant in the experience of patients with DM and kidney failure. She identifies three issues in particular: (a) the importance of continuity and personalized care, (b) the importance of being heard by health care professionals, and (c) the value placed by patients on collaborative relationships with professionals and professionals who shared information. The findings of these researchers support the importance of earlier findings by Thorne (1993). Self-management. In addition to studies of the patient experience of multi-morbidity (CKD and DM), there is also a small body of research pertaining to how people with multi-morbidity experience dealing with the self-management required for their conditions. I include two studies of the patient experience of self-management (Bayliss, Steiner, Fernald, Crane, & Main, 2003; Loeb, Penrod, Falkenstern, Gueldner, & Poon, 2003) that contribute to what is understood about the experience of multi-morbidity and the health care context. Bayliss et al. (2003) identified a number of potential barriers to self-care related to co-morbidity (the most common co-morbidities in this study were osteoarthritis and hypertension or respiratory disease), such as the compound effects of multiple conditions and medications, and the barrier presented by a single dominant condition to self-care of other conditions. The participants (N = 16) also noted the potential barrier of “inadequate communication with providers” (p. 19) and lack of information or knowledge about their conditions. Loeb et al. (2003) explored the coping strategies older adults (N = 37) with two or more chronic conditions use to manage daily life. The researchers identify seven categories of coping strategies: “relating with health care providers, medicating, exercising, changing  52  dietary patterns, seeking information, relying on spirituality and/or religion, and engaging in life” (p. 12). Of significance is the researchers’ finding that these “strategies were enacted within a partnership of care involving older adult, health care provider(s), and significant others” (pp. 12-13). Loeb et al.’s findings support the importance of collaborative relationships with knowledgeable health care providers. Physicians were the most common health care partner although direct and indirect references were made to other health care providers. Loeb et al. note the role of the pharmacist as a source of reliable information and ongoing assistance. The researchers comment on the invisibility of nurses in the participants’ discussions. Primary and acute health care. Other studies have focused specifically on consumers in the context of a specific health care setting. For example, Noel, Frueh, Larme, and Pugh’s (2005) study of the care needs and preferences of primary health care patients in the USA, Infante et al.’s (2004) study of patients in general practices in Australia, or Williams’ (2004) exploration of consumer experiences of acute care services in Australia. All these studies focused specifically on patients with multi-morbidity. Although the studies by Noel et al. and Infante et al. focus on primary health care patients and Williams focused on patients in acute care, all these studies contribute to our understanding of the health care context and the experience of navigation in multi-morbidity. Noel et al.’s (2005) findings with regard to the “problems that patients face in having multiple chronic illnesses, their experiences in communicating with their providers, their self-management learning needs, and their preferences for monitoring and follow-up” (p. 55) bear strong similarity to the findings of other researchers exploring the chronic illness  53  experience, for example, the effect of physical symptoms, changes in relationships, impact on work and other activities, and psychological problems such as depression. Like the participants in the study by Bayliss et al. (2003), the participants (N = 60) in Noel et al.’s study identified problems associated with the composite effect of multiple medications. Confirming the findings of other authors reviewed previously, problems associated with the health care system or providers were a significant issue for participants in Noel et al.’s (2005) study. The authors note frequently mentioned issues associated with the health care system as including “(i) long waits for referrals, (ii) poor continuity of care between clinics, (iii) problems in accessing non-scheduled, urgent care, (iv) multiple appointments, and (v) problems communicating with their providers” (p. 57). They also draw attention to the value placed on relationships with health care providers that increased collaboration and communication (both listening and information-sharing). Strategies used by these participants to manage problems with health care providers bear similarities to Thorne’s 1993 findings, for example, seeking alternate opinions and coordinating care by initiating open dialogue between care providers. This study by Noel et al. (2005) also specifically elicited information about patient preferences for follow-up and monitoring. The most common means of contacting the clinic was telephone. Nurses, particularly nurse practitioners, were more visible in the discussions about care providers and regarded positively, as were physician-led multi-disciplinary primary health care teams. These researchers note that many of the problems identified cannot be attributed to multi-morbidity per se but that multi-morbidity does appear to “magnify …problems or increase the probability that such problems will occur” (p. 61). Infante et al. (2004) also used focus groups to interview primary health care patients  54  (N = 76) with chronic illnesses about the nature and quality of their care in general practice. However, they recruited their sample through public and physician print media, and consumer organizations in South Australia. Infante et al. identify several themes in their findings that relate to the health care context: (a) continuity of care supported by a continuing relationship with the GP, (b) access to other health care providers, (c) the importance of interpersonal skills (especially communication skills), clinical skills, and accessibility as desirable characteristics in a GP, (d) the need for consumers to be able to choose their level of involvement in their care, (e) the positive role played by consumer organizations in providing support, information, and as a resource for GPs, (f) access to a variety of services, extended hours, home visits, short waiting times, multiple disciplines (especially nurses), and a comfortable environment were emphasized as important in general practice settings. Many of these contextual factors are similar to aspects of patient experiences identified in other studies. Williams (2004) considers a different aspect of the patient perspective, focusing on the perceptions of the quality of acute care services of patients (N = 12) with co-morbidities. Williams identifies poor continuity in the care of patients’ co-morbidities as an issue, particularly for conditions that caused discomfort as opposed to being life-threatening. She notes poor information transfer between care providers as a problem and perceived inadequate discharge planning due to lack of consideration of co-morbidities. Her participants also commented on the challenges of integrating the education they received about self-management at discharge with their treatment or self-management of other comorbidities. Williams (2004) also comments on difficulties faced by patients related to the  55  community setting. She talks about referral patterns making timely access to specialists difficult, and the difficulty faced by patients in making time for follow-up because of the time required for self-management of multiple chronic conditions. She identifies additional challenges to continuity of care due to the multiple appointments needed for follow-up by different providers in separate locations, or regular providers being unavailable and patients having to see a replacement who did not know them. Multiple physicians also led to confusion about who was responsible for which conditions. Williams, like Thorne (1993) and others, comments on the importance of communication between providers and patients and other providers. Williams also notes that co-morbidity “magnified the difficulties associated with being chronically ill, and that the whole of these patients’ health problems was bigger than the sum of the individual comorbidities” (p. 20). She concludes with an observation that nursing can play a greater role in improving continuity of care for patients with co-morbid chronic illnesses by taking advantage of acute care episodes to review and implement integrated, appropriate plans of care. Navigation in the context of multi-morbidity. In this literature review, two studies were identified pertaining directly to the perspective of patients with chronic conditions on health care system navigation. Rasmussen et al. (2001) explored consumer issues in navigating health care services for patients (N = 10) with Type I DM in Australia. The theme in the findings of particular interest in this review is “access to expert health professionals” (p. 629). The authors describe the importance to participants of gaining access to the appropriate doctor for their needs; this doctor was usually a specialist. The right physician was seen as assisting service navigation “through their up-to-date knowledge, liaison with other health professionals, use of non-judgemental  56  attitudes, and emotional support” (p. 630). Rasmussen et al. also note that needing a GP’s referral was a hindrance to access to specialist providers. Like other researchers reviewed here, Rasmussen et al. identify the importance of inter-professional communication to continuity of care and respectful and collaborative relationships with professionals as beneficial to the navigation experience. The second qualitative study, by Preston, Cheater, Baker, and Hearnshaw (1999), explored patients’ (N = 33) (with chronic conditions) and caregivers (N = 8) perceptions of the care they received across the interface of primary and secondary care in the United Kingdom. The participants in their study identified similar aids and hindrances to access and progress through the system as those in previous studies reviewed. These included staff attitudes, and the quality of relationships with GPs (good relationships were perceived as improving timeliness of referrals). These researchers also identify the influence of the organizational setting on relationships with staff; long-term relationships with GPs were perceived as increasing access to information and collaboration about care. Continuity of care by professionals was perceived as beneficial. Coordination and communication across settings and professionals was important in assisting patients to progress through the system. Preston et al. describe “limbo” (a state in which patients felt they were not making progress) as occurring most often when “patients moved from one stage of care to another across interfaces or between professionals” (p. 20). Common themes. The preceding review of this varied body of literature enables the identification of a number of common themes related to the patient perspective on dealing with health care systems. Several authors have recognized the importance of knowledgeable and expert care  57  providers, provider respect for patient expertise, and collaborative provider-patient relationships to patients with multi-morbidity (Infante et al., 2004; Ravenscroft, 2005; Williams, 2004). The findings about self-management issues experienced by people with multimorbidity resonate with the findings about self-management by researchers exploring the experience of single chronic conditions (Price, 1993; Thorne, Paterson, & Russell, 2003; Thorne & Paterson, 2001). For example, these include unrealistic or incompatible selfmanagement or treatment recommendations, inadequate patient knowledge, and erroneous assumptions about patient’ needs for information or conflicting information (Bayliss et al., 2003; Noel et al., 2005; Williams, 2004). Other themes related to dealing with health care systems lend support to suggested principles for CDM, especially as regards improving continuity of and access to care. Continuity of care is negatively affected by (a) a lack of communication between care providers, (b) care providers not being available and replacements not always well-informed about the patient, and (c) comprehensive information about the patient and their conditions not always being accessible or communicated (Loeb et al., 2003; Noel et al., 2005; Ravenscroft, 2005; Williams, 2004). Thorne and Paterson (2001) also note that reducing the number of care providers with whom a patient has to develop a relationship, that is, increasing the continuity of care by a provider(s) over time, may assist in the trajectory of a patient’s self-management. Access to care is complicated by referral patterns that may hinder access to specialists. It is also complicated by fragmented care provision including logistical problems associated with multiple appointments, transport, and parking, and inadequate appointment or hospital admission time to address concerns (Noel et al., 2005; Ravenscroft,  58  1999, 2005; Williams, 2004). Though limited in number and varied in focus, the publications about the experiences of people with multi-morbidity speak to many of the findings of the larger body of literature about single chronic conditions with regard to the work done by consumers with chronic conditions in navigating the health care system and encounters with care providers (Corbin & Strauss, 1988; O'Brien, 1983; Preston et al., 1999; Rasmussen et al., 2001; Tang & Anderson, 1999; Thorne, 1993). A recent survey of adults with either ongoing health problems or recent, more intensive use of the health care system in the United States, Canada, the United Kingdom, Australia, and New Zealand identified insufficient care coordination and access to care as being particularly problematic for consumers (Blendon, Schoen, DesRoches, Osborn, & Zapert, 2003). Preston et al. also note these issues in their investigation of patients’ and carers’ recent experiences of the interface between primary and secondary care in the United Kingdom, as do Rasmussen et al. in their identification of consumer issues in navigating health care services with Type I DM in Australia. Consumers dealing with multi-morbidity, like those with single chronic conditions, have to expend energy, time, and resources to overcome some of the difficulties they encounter as they maneuver through the health care system. However, the body of literature specific to multi-morbidity suggests that multi-morbidity creates greater complexity. The relationship between multi-morbidity (e.g., number of chronic conditions, types of conditions, or clusters of conditions) and complexity of health problems is not wellunderstood (Bayliss et al., 2003; Noel et al., 2005; Williams, 2004). Still, increased complexity seems likely to complicate the experience of people with multi-morbidity as they navigate the health care system and increase the likelihood that they will experience  59  problems in doing so. Summary I have previously described navigation as the work required to know and understand the health care system and to move through the health care system to access relevant care and enhance continuity of care. This chapter presented a review of the literature and discourse pertaining to defining chronic conditions, the scope of the problem, care delivery strategies, and what is known about the patient perspective on health care navigation. This literature review highlights how little theoretical or empirical literature exists pertaining directly to patient navigation in the context of either single or multiple chronic conditions. Future research, such as the current study, may address methodological issues found in the literature, for example, by using qualitative methods to draw out the patient perspective and focusing on specific types and clusters of chronic conditions. My intent with the research described in this thesis was to add to the small body of knowledge about the phenomenon of health care system navigation in the context of multimorbidity by eliciting information about the phenomenon from the patient perspective. The review of the literature provided some insights into the context for and the phenomenon of health care system navigation in the context of multi-morbidity. I was sensitized by these insights, as is evident in my description of the method in the next chapter.  60  Figure 2.1 The Chronic Care Model  Permission to copy granted by: The ICIC, a national program supported by The Robert Wood Johnson Foundation with direction and technical assistance provided by Group Health Cooperative's MacColl Institute for Healthcare Innovation  61  Figure 2.2 Innovative Care for Chronic Conditions Framework  Reproduction of extracts from the WHO website permitted for use in a noncommercial document (such as an academic thesis or dissertation) (World Health Organization, 2007).  62  CHAPTER THREE: METHOD Introduction In this chapter of my research thesis, I present the method that I used to conduct this research study between January 2006 and December 2007. I begin with a presentation of the strategy of inquiry that I chose to guide my research and reflect on the implications of my theoretical location as the researcher in undertaking such an inquiry. I address how and where I recruited and selected participants, and the criteria I used to determine my final sample size. I discuss how I collected and analyzed my data. I conclude by considering some of my ethical considerations in conducting this research, issues of rigor, and some of the potential limitations to my research. Strategy of Inquiry In designing this research I chose to use a qualitative descriptive approach to specifically explore and describe how patients dealing with multiple, co-existing chronic conditions experience navigating the health care system. I took specific direction from interpretive description (Thorne, Reimer-Kirkham, & MacDonald-Emes, 1997; Thorne, Reimer Kirkham, & O'Flynn-Magee, 2004b) as one way to approach qualitative description (Sandelowski, 2000). I anticipated that this approach would enable me to develop a coherent description of the phenomenon and present provisional truth claims about it that clinicians and policy/decision-makers may be able to apply in their practice. The following overview of interpretive descriptive inquiry as described by Thorne and her colleagues provides a background for my research design. Interpretive description is an approach informed by other strategies of inquiry such as  63  ethnography, grounded theory, phenomenology, and naturalistic inquiry3. Set forth as a guiding rather than prescriptive approach to inquiry, the sound philosophical logic and structure articulated for interpretive description provided me with a foundation for my decisions about study design (Thorne et al., 1997; Thorne et al., 2004a). In particular, an interpretive descriptive approach allowed me to take an epistemological orientation to my research that recognized (a) multiple, constructed, subjective realities; (b) the interaction and influence on one another of researcher and participants; and (c) an emergent or grounded orientation to conceptual thinking (Thorne et al., 2004a). Interpretive description moves beyond description of the phenomenon in challenging the researcher to search for understandings of the phenomenon that may have theoretical application. I anticipated that this design approach would facilitate an exploration of the consumer experience of health care system navigation and the creation of an interpretive account that will be meaningful and useful to clinicians and other decision-makers working to improve health care delivery for people with chronic conditions. Interpretive description is a well-described, inductive approach to study design (Thorne et al., 1997; Thorne et al., 2004a). Thorne, Reimer-Kirkham, and O-Flynn-Magee (2004a) describe some common design characteristics of this approach as including the following. Purposeful and theoretical sampling are used to select information-rich participants who can enlighten the researcher about expected variations in the phenomenon and emerging themes and patterns in the data. The goal of data collection is to acquire 3  These other strategies of inquiry were developed in and for the purposes of disciplines like sociology and anthropology. These disciplines, unlike nursing and other health sciences, are not practice oriented and there is perhaps less imperative for early descriptive research about a phenomenon to have practice application. I have rejected these other strategies of inquiry because my intent is not to generate theory about underlying social processes (grounded theory), to describe the essence of the lived experience (phenomenology) or to investigate issues related to culture (ethnography) and I wish this descriptive research to have practice application (Denzin & Lincoln, 2000; Morse & Field, 1995).  64  experiential knowledge about the phenomenon; data collection approaches may include interviews, participant observation, and analysis of documents. Verification strategies are used to locate the data and emerging interpretations of the data within the context of the sensitizing framework. The goal of an interpretive description is to create a sound, logical description of the phenomenon that reflects the common patterns and themes without losing sight of individual variations. I was guided by these design features described by Thorne et al. (1997; 2004a) and the work of others, such as Sandelowski (1995) and Patton (2002), in articulating my research design. I also took direction from authors like Lincoln and Guba (1985), Patton (2002), and Sandelowski, Davis, and Harris (1989) with regard to naturalistic inquiry. My research design was naturalistic to the extent that the research took place in the environment of the participants, the data collection process was minimally structured, no attempt was made to manipulate the phenomena under investigation, and the design was emergent in that it was shaped by the iterative process of data collection and analysis. Location of the Researcher In undertaking an interpretive descriptive study my theoretical location as the researcher was significant. I came to this research sensitized to the possibility of finding certain themes or patterns in the participants’ descriptions of their experiences. My theoretical location as researcher derived from the sensitizing framework provided by the extant body of knowledge and my personal and clinical background. This sensitizing framework had the potential to influence my proposed research process by, for example, introducing the potential for bias in how I collected the data, my openness to the unexpected in the data, and the findings that I reported. In the literature review I presented the extant  65  body of knowledge that I consider particularly relevant to this research. I now provide a brief description of my pertinent personal and clinical background. I am a registered nurse (RN) with several years of diverse clinical experience in acute care hospitals and over 10 years of clinical nephrology nursing experience. I have experienced two countries on different continents with different health care system designs -in South Africa a two tier private-public system and in Canada a publicly funded, universal health care system. I have observed and cared for many people (patients and families) who have had to navigate a health care system. I have noted that having a chronic condition appears to make navigating the health care system more complex and that multi-morbidity appears to introduce still more complexity for patients. I have also observed and encountered the problems created for access to and continuity of care by a fragmented health care system in which patients with chronic conditions receive care from multiple providers in isolated locations of a health care system. My personal experiences as a patient also heightened my awareness as a researcher. I am personally aware of aspects of the health care system that may hinder or assist patients navigating the health care system in Canada. Some of these aspects include the role of the family physician in referrals to specialists, information and care systems, and the importance of understanding and knowing the system in accessing and ensuring continuity of care. My own experiences of the health care system continue to draw my attention to aspects of the health care system such as these that affect my ability, and perhaps that of others, to navigate the health care system. I suspect that my privileged position as a RN with graduate education with a specific focus on chronic conditions (and CKD in particular), having ‘insider’ information, and having access to the resource of a network of professional colleagues,  66  assists me to avoid and overcome many of these challenges. In exploring the health care navigation experience from the perspective of consumers living with multi-morbidity, I tried to remain aware of my personal and clinical experiences. I was conscious of and explicit about drawing on these, as part of my sensitizing framework, in the design of my research and mindful of the potential influences that they and the extant knowledge reviewed prior to beginning this research might introduce during analysis and interpretation of the data. For example, during the time I was doing this research I and members of my family had both positive and negative encounters with health care providers and the health care system. I took particular care to ensure that I was not allowing these to selectively color my analysis of the study data. I was also cognizant that media reports about health care might influence my own or the perceptions of participants. To limit this potential influence I maintained a file of pertinent newspaper and other media releases and was mindful of these when interviewing participants, and analyzing the interview data. Recruitment Sites I chose to recruit my participants from CKD clinics at academic hospitals in a large city in Ontario, Canada. I recognized that workload is an issue in many health care settings. Therefore, I decided, if possible, to recruit participants from more than one CKD clinic. I identified three academic health care organizations with CKD clinics in the city. I was able to recruit participants from all three sites with the majority of the participants recruited from the first organization from which I received research ethics board (REB) approval in May 2006. Using three recruitment locations served three purposes. One, it reduced the burden on staff at any one clinic regarding identifying patients meeting the recruitment criteria and distributing information letters to these patients. Two, it increased the number of potential  67  participants and the likelihood of recruiting an adequate sample size. Three, this recruitment strategy enabled me to address anticipated issues related to features of the health care system or organization that may affect the navigation experience. For example, differences related to CKD clinic features, features of the organization in which the CKD clinic was located, and other contextual features, such as linkages between the CKD clinic and the organization or wider community or health care system. Negotiating Access Gaining access to all three recruitment sites was a protracted process. I received UBC Behavioral Research Ethics Board (BREB) approval in February 2006, and agency-specific REB approval in April 2006 for the first site, and July 2006 for the other two sites. I started recruitment at the first site in May 2006, but at the request of the CKD clinic staff at the other two sites did not start recruitment at these sites until October 2006. I had two difficulties that contributed to the lengthy timeline for gaining recruitment site access. One, at the outset I was not known to the staff in any of these three academic health care organizations; it took me between one and four months to introduce myself to and develop a working relationship with the relevant staff at each organization. I started making contact with staff at all three sites in January 2006 while waiting for ethical approval for my study from the BREB at the University of British Columbia. At first gaining access to the three recruitment locations went well. I began by making contact with the primary RN at each CKD clinic; all three RNs were supportive of my planned research, and willing to assist me with recruitment. I followed up on this with indirect (through the respective clinic RNs) and direct contact with the nursing directors for each CKD clinic; the nursing directors also expressed their support.  68  Two, I then encountered two issues related to the ethics approval application process that delayed my gaining access to start recruitment. First, there were assorted and timeconsuming application processes; although the three locations shared an application form, in fact each site was using a different version of the form, had different requirements as regards completion, and requested different supporting documentation. Second, I was not a member of staff at any of the recruitment locations. Not being a member of staff directly influenced my ethics application process in two ways. One, the REBs at two sites required me to designate myself as a co-investigator and an agency staff member as the primary investigator. It was important to take the time to understand any implications of doing this both for me and the RN at each CKD clinic who had agreed to be my on-staff contact person (and their managers). Two, delays were caused because the REBs at two locations communicated indirectly with me through the on-staff contact person (designated as ‘primary investigator’ on the REB approval application form). The many other demands on these RNs’ time influenced how promptly I received REB-related communication. At one site study progress was delayed by six weeks because I was not notified that my research had agency REB approval. It was also difficult as an outside researcher to find out what procedure to follow in order to gain access to patient participants’ health records. Figuring out the procedure took between two and nine months. Selection of Participants As I negotiated access and received REB approval for the study I was able to start participant recruitment at each of the three sites. Participant recruitment occurred between May and November 2006.  69  Inclusion Criteria My sensitizing framework suggested that the experience of people dealing with multimorbidity may differ depending on the types of chronic conditions and how these are clustered. The health care navigation experiences of people who have major chronic conditions are likely to be substantially different from those of people dealing with more minor chronic conditions that require fewer medications or other interventions, are less disruptive to daily life, and necessitate fewer contacts with the health care system over time. Certain chronic conditions are also of particular interest to consumers, health care providers, and policy makers because they account for significant direct and indirect health care costs, morbidity, and mortality. Three such, often interrelated, major chronic conditions are CKD, DM, and CVD. I chose stage 1 to 4 CKD as my index condition. I anticipated that this patient group would be more likely than patients with kidney failure (stage 5 CKD) to be able to engage in this research because they are not experiencing dialysis-related side-effects and other treatmentrelated limitations. Patients on dialysis or post-transplantation may be more “accessible” to researchers because of their frequent interactions with the health care system for dialysis or follow-up. However, I anticipated that the structure of these interactions would make their health care navigation experience substantially different from that of patients with stages 1 to 4 CKD. CKD is an exemplar of a chronic condition with significant repercussions at the individual and societal level. In addition, patients with CKD are likely to have one or both of two other major chronic conditions (DM or CVD) (Canadian Organ Replacement Register (CORR), 2002; Levin, 2003b). The initial criteria I used in selecting participants for this study included:  70  •  Adult participants (19 years or older) with diagnosed stage 1 to 4 CKD;  •  Participants attending a clinic for management of their CKD (CKD clinics4);  •  Participants with co-existing diagnosed DM5 or CVD6, or both;  •  Participants capable of communicating in English, although not necessarily literate in English.  Sampling Process I selected participants using purposeful and theoretical sampling. Purposeful sampling enabled me to focus my participant selection on people that were likely to be able to provide substantial information about the phenomenon being studied (Patton, 2002; Thorne et al., 2004a). I began my participant selection by using purposeful sampling to select participants that were likely to be good informants about the experience of navigating the health care system with co-existing chronic conditions. The sensitizing framework provided by my clinical experience, and the background and literature review chapters of this proposal provided direction for the initial purposeful sampling. As data collection and analysis proceeded I used theoretical sampling to focus on finding people who could illuminate specific aspects of the experience and/or emerging findings (Sandelowski et al., 1989; Thorne et al., 1997). I anticipated that I may find substantial differences in the navigation experiences of individuals with certain combinations of conditions, at different stages of CKD, with access to different resources, of various ages, and from different cultural backgrounds (e.g., ethnicity, etc.). I used the emerging themes and  4  I recognize that there is no consistent terminology in use to describe clinics with a focus on managing CKD. For the purposes of this research I am choosing to use the term ‘CKD clinic’ when referring to these types of clinics. 5 DM - defined as Type I or II DM 6 CVD - broadly defined as any cardiovascular condition including, but not limited to, hyptertension, left ventricular hypertrophy, cardiac arrythmia, congestive heart failure, and coronary artery disease.  71  patterns identified in the data from each successive interview to guide my participant selection. In this way, additional participants were selected whose experiences might answer specific theoretical questions arising from the data analysis, and reveal contrasts or variations in the experience of health care system navigation. For example, after interviewing a majority of participants over 65 years of age, I asked the clinics to identify and approach younger participants and was able to recruit several younger participants. On occasion, theoretical sampling occurred more serendipitously. For instance, as I analysed and collected the early interview data I identified a need to include patients who lived outside the city core and the catchment areas for acute or emergent care at the recruitment sites. In this instance, the CKD clinics approached a number of such patients before I was able to ask them to do so, giving me the chance to recruit several people who met these theoretically derived inclusion criteria. I am confident that my recruitment sites and purposeful and theoretical sampling allowed me to develop a coherent description of the phenomenon grounded in a diversity of experiences that can be reasonably considered to be characteristic of the larger population of CKD patients with multi-morbidity. Recruitment Procedure 1. I made verbal contact with selected CKD clinics requesting permission to recruit participants. 2. I requested the CKD clinics to distribute letters of invitation (see Appendix A) to patients attending the clinic during a one week period who met my initial recruitment criteria. 3. With the permission of the CKD clinic I was present during the time that the letters of invitation were being distributed. I made myself available to clinic staff and potential  72  participants to answer any questions that may arise or speak with patients interested in participating in the study. 4. Potential participants who were interested in participating were able to contact me in person on the day they received the information letter (n = 34), or by telephone at the contact telephone number on the information letter (n = 4). 5. During my first contact with interested individuals who were able to communicate with me in English I asked for permission to telephone a week later to confirm that they still wish to participate and obtain verbal consent. 6. At my first contact with potential participants who were unable to communicate with me in English I explained the interview procedure and asked them and/or their caregiver(s) to contact me by telephone in a week if they still wished to participate. None of these potential participants (n = 4) contacted me. 7. I obtained written consent7 before the first interview with each participant (n = 20). 8. When possible I also asked clinic staff to distribute information letters to patients who met the inclusion criteria whom they believed to be information-rich, or able to elaborate or provide an alternative viewpoint on a specific aspect(s) of the emerging findings. 9. If insufficient participants made contact I planned to request the clinics to distribute the information letter for an additional week(s) to patients who met the inclusion criteria and/or to consider approaching additional locations for recruitment. I did not need to do this. 7  I was aware that I may encounter participants who may be unable to provide written consent, for example, because of literacy or visual problems. I ensured that I identified and followed an alternative acceptable procedure for consent for these participants. For example, I audio-taped and transcribed myself and the participants to whom this applied verbally noting that I had read to and discussed with them the Letter of Information and Consent, and the participant’s verbal consent to participate. There were no procedures specific to the organizations where participants were recruited and the procedure identified above was approved by the respective REBs.  73  Reasons for Non-Inclusion A number of people who were approached to participate chose not to participate. I was not able to ascertain how many people were approached and chose not to make contact with me. I had direct contact with 18 patients, after they were given information about the study, who did not participate in the study. Four patients did not share their contact information with me and did not telephone me. Seven patients did not meet the study inclusion criteria: four could not communicate with me (because they did not speak English or they had some other cognitive or speech impediment), two did not have either DM or CVD, and one was a transplant graft recipient. Three patients indicated that they were too busy with work or other commitments; two of these were men who appeared to be under 45 years of age. Two had other time commitments related to their health (e.g., upcoming surgery) and two did not contact me again after this first meeting. Sample Size I wanted an adequate number of participants to provide me with sufficient information about the experience of health care navigation from the perspective of consumers dealing with multi-morbidity and allow me to develop an interpretive description of the experience. Several authors (Sandelowski, 1995; Thorne, Reimer Kirkham, & O'FlynnMagee, 2004a) note that compared to other methods interpretive description studies often use small samples. I used the emerging findings from the concurrent, inductive analysis of the data being collected and my sensitizing framework to determine the final sample size. That is, I stopped recruiting participants when my analysis and comparison of the emerging themes and patterns in the data with the sensitizing framework indicated to me that my findings were coherent and reflective of the larger population.  74  My final sample consisted of 20 patients with CKD and other chronic conditions (including CVD and/or DM) from the three recruitment sites. In addition, four of these recruited participants had a family member who took part in their interview with the researcher. These family members were spouses who identified themselves as wanting to participate at the time of my initial interview with the respective patient participants. At the time of the interview I obtained written consent from these family members to use and retain their interview data. Data Collection The study participants were the primary source of data for this study. The principal data were collected during the interviews with the study participants. I interviewed every participant at least once. I encouraged participants to contact me if they wished to alter or add to their accounts of their experiences but none did. When possible I arranged a second interview with participants judged to be good informants to enable them to take some time to reflect on their experience of health care system navigation and add to their accounts. I used emerging patterns and themes to guide me in scheduling additional interviews with previously interviewed participants to seek further explanation of issues arising from the data analysis. Additional interviews were done with 6 participants. Interviews took place at a mutually convenient location. As the interviews were audio taped and transcribed verbatim, whenever possible, a quiet location was chosen. All but two of the initial interviews were done at the participants’ homes. At the request of two participants their initial interviews were done at the hospital on the same day as one of their CKD clinic appointments; one interview was done in an office at the CKD clinic and one interview in an examination room at the CKD clinic after the clinic concluded for the day.  75  The additional interviews with participants were done by telephone (n = 3) or at the participant’s home (n = 3), at the participant’s preference, to minimize inconvenience to each participant. I did not observe a qualitative difference in the nature of the interviews conducted in the various settings. The interviews were minimally structured and I used predominantly open-ended questions. The length of the interviews ranged from 30 minutes to 2 ½ hours with an average length of 1 ½ hours. These questions were initially informed by the sensitizing framework (see Appendix B for preliminary interview guide). My emerging findings provided me with direction to change or add questions. At the time of the initial interview I also collected collateral demographic data from the participants using a standard set of questions (see Appendix C). I also sought and collected additional collateral data from a number of secondary sources. These secondary sources of collateral data included informal interviews with expert clinicians and others, media coverage of health care issues, and documents (e.g., hospital or clinic pamphlets and newsletters, newspapers, and so on). For example, I engaged health care providers (nurses, physicians, and others) in informal one-on-one or group discussion about health care delivery and patient navigation. I presented my research in progress and emerging findings at a national nursing conference and discussed it with those who attended my presentation. I recorded secondary data in field notes and also maintained a chronological file of printed materials such as newspaper articles. In addition, I used a standard form (see Appendix D) to collect chart data from patient health records (e.g., clinic or hospital charts) that enriched my understanding of the patient experience. Accessing the participant health records also enabled me to obtain the  76  information that some of the participants were not able to provide. For instance, some of the participants did not know what had caused their kidney disease. This inclusive approach to data collection helped me to develop a sound interpretive description of health care system navigation as perceived by consumers with multi-morbidity. Participant Characteristics A considerable quantity of background data about the participants was collected both from their interviews and my review of their medical records. My consideration of these data, summarized here (see also Tables 3.18, 3.29, and 3.310), gave me a deeper appreciation of who my participants were as individuals and as a group of patients with multi-morbidity. Nine men and eleven women participated in the study; most of the participants were married and 16 had adult children. Five (25%) participants were between 45 and 64 years of age, nine (45%) between 65 and 74 years of age, and six (30%) over 74 years of age. As demographic data are not available for stages 1 to 4 CKD these data were compared to the demographic data for ESRD patients in Canada.The age distribution is roughly similar to the Canadian population numbers for ESRD patients, although my sample had a smaller percentage of people over 74 years of age and no people under 45 years of age (who are represented in the ESRD population albeit in smaller percentages than other age groups) (Canadian Institute for Health Information, 2006). The age distribution of my participants was corroborated as roughly reflective of the age distribution for the CKD clinics from which participants were recruited by nurses working at these clinics. Possible explanations for the age distribution of my sample include the likelihood of a higher prevalence of multi-  8  Table 3.1 Participant Demographic Characteristics Table 3.2 Participant CKD Data 10 Table 3.3 Participant Multi-Morbidity Data 9  77  morbidity in older adults attending these clinics and that older adults (particularly those who are not working) might be willing to volunteer their time. All twenty participants had CKD, and either DM or CVD, or both; most of the participants also had one or more other chronic conditions. The length of time since diagnosis of CKD ranged from 3 to 10 years. The participants’ other chronic conditions included ophthalmic conditions like glaucoma, retinopathy, and cataracts; gastrointestinal conditions such as gastritis, diverticulitis, and reflux disease; lymphadema; fibromyalgia; psoriasis; arthritis; peripheral neuropathy; peripheral vascular disease; and hearing loss. Several of the participants in this study had family members (spouses or adult children) who were also dealing with chronic conditions. Two participants had wives receiving follow-up or treatment for cancer, another two participants had wives with severe neurological disorders necessitating assistance with day-to-day self-care and housekeeping activities, and one participant lived with an adult child with severe cardiac disease. All these participants described themselves as the primary caregiver in the relationship. These participants were not unlike the other participants in most ways, but their stories also included references to a broader range of help-seeking activities. The majority (n = 17) of the 20 patients who participated lived in the immediate urban catchment areas of these three health care sites. Three participants lived between 120 km and 150 km outside the urban area where they attended CKD clinic and other specialist physician appointments. Two of these participants also traveled these distances to see their GP; the third had a primary health care provider within 10 km of her home. Eighteen of the participants were Caucasian, and two were black. Although there was a substantial Asian population at two of the CKD clinics no such individuals volunteered or  78  were recruited by the nurses. Although this may be a product of the English communication inclusion criterion, it is important to note that the sample was not inclusive of all the possible demographic groupings within the patient population. All but one participant spoke English as their home language. Four spoke languages other than English, but only one spoke another language as her primary language; when I asked, this participant told me she preferred speaking about health care in English as she had acquired most of her health care-related vocabulary since moving to Canada 40 years ago. The participants’ educational and employment backgrounds varied as did their ethnic/cultural backgrounds. Very few of the participants were working. Of the 20 participants, four had less than a high school diploma, four had a high school diploma, five a college education, and seven a university education. All but three participants were born in Canada; all of these immigrants had been living in Canada for over 30 years. Though I did not collect specific data about the participants’ socio-economic circumstances, my impression from their interviews was that the participants represented a wide range of socio-economic circumstances. These circumstances ranged from those who described themselves as wealthy to those living in subsidized, community housing and/or who described themselves as reliant on old age or disability pensions. There were no participants of very low income (i.e., homeless, marginalized, etc.) in my sample. Data Analysis The data included transcripts of the audio tapes, demographic data, and the secondary collateral data. The secondary data collected from expert clinicians and clinic, organizational, and other documents provided collateral information that added context for my understanding and interpretation of the patient perspectives. Qualitative data analysis was  79  consistent with the guidelines proposed for interpretive description (Thorne et al., 2004a). The key steps in the analytic process of an interpretive descriptive study are described by Thorne, Reimer Kirkham, and O’Flynn-Magee (2004a) as (a) understanding the data, (b) finding and integrating meanings in the data (coding), (c) theorizing about relationships in the data, and (d) interpreting the findings. That is, the analytic process is inductive rather than deductive. I was consciously reflective about my inductive analysis in order to avoid inappropriately holding onto my initial assumptions or coming to premature conclusions. I noted Thorne et al.’s (2004a) suggestion that tensions arising from the prevalence of themes or experiences can be valuable investigative resources. As noted by these authors, the actual process of analysis depended on my intellectual curiosity to understand the phenomenon of navigation and consider a wide range of alternatives before making interpretive decisions. I consulted expert, reflective clinicians and scholars as a means to cross check my evolving conceptualizations of the data against other alternative explanations that these resources provided. Data collection and analysis are iterative (Thorne et al., 2004a); so, the emphasis of the inquiry shifted as analysis proceeded in order to challenge the emerging conceptualizations. As a result my data collection decisions were guided by ongoing concurrent data analysis; I took direction from the emerging themes, patterns, and tentative interpretations of the data to ensure that I was including participants who might substantiate, challenge, or refute my emerging findings. For instance, participants from rural and urban areas, and participants who were receiving care from providers in one organization and participants who were receiving care from providers in multiple locations. In keeping with  80  the iterative nature of the analysis the questions used to prompt participants and coding categories also shifted during the inquiry. Throughout the research process I paid careful attention to steps that I could take to ensure that my research was as rigorous and credible as possible. The constant comparative techniques described by Thorne et al. (2004a) provided me with guidance as I engaged in the iterative process of data collection and analysis. I also sought insights from other forms of inquiry, such as grounded theory amongst others (Denzin & Lincoln, 2003; Strauss & Corbin, 1990). I began my analysis by personally transcribing each interview verbatim, reading, and re-reading the interviews. The transcription process allowed me to focus on the nuances, created by pauses, tone of voice, and so on, within each participant’s account. Transcribing the interviews also enabled me to step back from my immediate impression of each participant’s story, and attend more deeply to the nuances of what each participant said, beyond the words and phrases that initially caught my attention. It took between four to eight hours to transcribe each interview. This transcription time was usually spread over several days, because I took pauses from transcribing to reflect on what I was hearing, interrogate the data concurrently with doing the transcription, and make notes. During my analysis of the qualitative data I engaged both in coding11 as well as in a number of alternatives to coding. My very earliest data analysis focused on highlighting words or phrases, and making memos in the margin of the transcript. With each successive interview these activities were supplemented by identification of broad tentative conceptually  11  I understood coding as “breaking down, examining, comparing, conceptualizing, and categorizing data” (Strauss & Corbin, 1990, p. 61).  81  labeled “codes”12 that corresponded to pieces of data with similar properties (or contrasting ones) from within and across the interviews. Throughout this process I took care to be as inclusive of the data as possible and not to leap to premature conclusions about the emerging findings. When I encountered data that seemed new or incongruent with my understanding of previous data I used this to challenge my inductive thinking about the data and explore alternative interpretations. As the body of data grew I was able to see emerging groupings among the codes that enabled me to organize the data into broader categories as I continued my research. These categories were also tentative and evolved as data collection and analysis continued. For instance, early in my data analysis I grouped a large variety of “codes” pertaining to health care personnel into three categories, namely, availability, access, and interpersonal interactions. As I engaged in the inductive analysis I strategically immersed myself in the data and analysis and withdrew from it to reflect and gain perspective. This enabled me to begin to identify emerging themes and patterns in these broader categories of data. Mid-way through the data collection (late 2006) I presented my tentative themes (i.e., roles and responsibilities, the right provider, being connected, luck and working the system, and trust in the system vs. trust in my system) at a nephrology nursing conference. The audience questions and discussion challenged my interpretation of the data leading me to re-examine the data and further refinement. I continually questioned the data, challenged my preliminary interpretations, and entertained alternative ways of conceptualizing the data, until I was confident that I had generated a conceptualization that allowed me to convey the commonalities and patterns across the group in a manner that effectively represented all 12  Described by Strauss and Corbin (1990) as “taking apart an observation, a sentence, a paragraph, and giving each discrete incident, idea, or event, a name, something that stands for or represents a phenomenon” (p. 63).  82  relevant shared aspects of their experience within a logical and coherent account. Ethical Considerations Prior, written approval to conduct the study and to recruit participants was obtained from the University of British Columbia’s BREB and the REBs governing the locations selected for participant recruitment. Additional amendments to this approval were sought as necessary during the study period. Some of these changes were limited in scope. For example, permission was requested at one recruitment location to alter the letterhead to reflect a change in organization name. Amendment was also sought from the University of British Columbia’s BREB, prior to starting recruitment, to amend the consent form to reflect additional content and formatting requested by the REBs of the recruitment locations. Other amendments were more extensive, such as changes made regarding including the interview data provided by family members. The researcher had not anticipated the inclusion of family members in the interviews. Therefore, when these family members asked to participate at the time of the interview, the researcher obtained verbal consent from these family members to include and retain only their interview data. At that time the researcher also obtained written consent using the original consent form. Later, a family member information and consent form was developed, and the original form was amended to reflect the patient’s consent to have their family member participate in the interview. Once ethics amendment was approved, the family members and the patient participants were asked to reconsent, using these new, more appropriate forms, prior to the inclusion of the family participant’ data in the research. Participant rights were protected by:  83  1. Providing a full description and explanation of the study and the researcher’s expectations prior to obtaining consent (see Appendix A); 2. Obtaining appropriate written consent13 to participate from each participant (see Appendix A); 3. Assuring participants that decision to withdraw from or to not participate in the study would not affect their care; 4. Informing participants of the confidentiality of their participation ensured through general descriptions of settings, circumstances, secure storage of all data, and the removal of names and identifying information from the transcripts and final report; 5. Ensuring the privacy of the interview location; 6. Erasing any portion of a tape at the participant’s request; 7. Offering the participants the opportunity to receive a summary of my findings at the conclusion of the study. 8. Reporting the findings, including participant characteristics and demographic data, in such a way as to protect individual privacy. Rigor The role of the researcher in determining the credibility of his or her findings is crucial. As for any study, whether qualitative or quantitative, I am concerned with the rigor (i.e., the quality or excellence or credibility) of my research. I recognize that the term rigor, and associated terms of reliability and validity, are strongly associated with quantitative research and the relevance of these concepts to qualitative research is contentious (Amgen, 2000). I acknowledge that there is no list of attributes that will ensure the validity and  13  See footnote # 7  84  reliability of my research (Thorne et al., 2004a). However, I tried to do what I could to make sure that this research is sound, just, and well-founded (Whittemore, Chase, & Mandle, 2001). As a relatively inexperienced researcher there are some threats to rigor that I was mindful of as my research proceeded. I was on the alert for potentially problematic patterns within my inductive analysis that may lead to premature closure or ungrounded findings (Thorne & Darbyshire, 2005); I feel confident that these have ultimately not significantly affected the quality of my analysis and findings. I also strove to attend to the criteria suggested by (Lincoln & Guba, 1985): •  Credibility: descriptions or interpretations that enable others (either having the same experience or confronted with it) to recognize it;  •  Fittingness: findings, based on life experiences and both the typical and atypical elements of the phenomenon, fitting into contexts outside of the research context such that an audience will see the findings as meaningful and applicable;  •  Auditability: ensuring another researcher can clearly follow the decision-making trail; and  •  Confirmability: established if the previous three criteria are met.  Specific steps that I took toward achieving these criteria included exploring the “fit” of emerging themes for participants as I interviewed successive participants and in second interviews with previously interviewed participants, presenting my research in progress at two national conferences, discussing my emerging findings with clinicians and other experts, sharing my work with my expert committee, and the production of this thesis. Ultimately, I believe this research will be judged by my peers using criteria similar to  85  those identified by Emden, Hancock, Schubert, and Darbyshire (2001): Therefore, I (a) paid attention to detail with honesty and trustworthiness; (b) tried to write with impact, effect, meaning, and believability; (c) tried to relate my findings usefully to practice and other research; and (d) tried to show that quality is important, consensual, and achievable. In so doing, I take full responsibility for the data privileged and included in this research, how and why I reported my findings, how I structured the interpretation of these findings, and how I disseminate my findings. Limitations of this Study There are a number of limitations to the study, some more self-evident than others. Amongst the more self-evident limitations are (a) the characteristics of the participants, (b) the exclusion of family members or caregivers, (c) excluding participants who are not able to express themselves in English, and (d) the complexities of the phenomenon under study. Despite the best efforts of the researcher and CKD clinic nurses there were no participants 19 to 44 years of age, and the majority of the participants were 65 years of age or older (76%) and not working (80%). The inclusion of younger, working patients in future studies may expand the understanding the navigational experience of patients with multimorbidity captured here. The research was also limited by my choice to only recruit patients and to exclude those whose health conditions impair their ability to communicate. For example, patients with mental health conditions like Alzheimer’s or other forms of dementia, and patients with speech impediments, for instance, due to a stroke. Many of these individuals rely on family members or others to assist them to navigate the health care system, as I was privileged to observe and be told (by family members in the waiting area) during the recruitment phase of  86  this research. The exclusion of these patients and their caregivers from my research limits the relevance of the findings to the patient population with multi-morbidity for whom there are relatively few communication barriers between patients and the system. My decision served the interests and purpose of this research well, but the participation of some spouses in the participant interviews and my observations in CKD clinics during participant recruitment highlighted the potential value of including family members or caregivers in future research. Broader inclusion criteria will enable the apprehension of specific issues encountered by this group of patients and their caregivers. Lastly, the decision to include only participants able to express themselves in English limits the relevance of the findings to the patient population for whom there are relatively few communication barriers between patients and the health care system. Cultural dissimilarity and health literacy are identified issues in health care system navigation. It is often claimed that public structures, such as the Ontario health care system, are designed for people who can speak and understand English at a Grade 6 or higher level. Many patients and their families, particularly immigrants and/or their families, do not have this fluency in English. In addition, their diverse ethno-cultural backgrounds may also affect their understanding of the Canadian health care system. Previous research suggests that nurses may make assumptions about their patients on their appearance (Browne, 2007; Browne, Smye, & Varcoe, 2005). I recruited my participants through clinic nurses and the nurses’ perceptions of patients’ ability to communicate in English affected which patients they approached. Thus, relying on the clinic nurses to recruit patients and being only able to include people who were fluent in English may have inadvertently affected the type of information I was able to gather. The inclusion of non-English speakers in future research  87  may capture aspects of the health care system that assist or challenge health care navigation by individuals to whom the system is ethno-culturally dissimilar. The complexity of the phenomenon being investigated also makes this research vulnerable to some less self-evident limitations: (a) the changing nature of the phenomenon, b) the complexity of the phenomenon, and (c) the importance of considering the phenomenon in context. In designing the study I was mindful of the notion that the phenomenon being studied is not static; the complexity of the phenomenon, including the chronic conditions that the consumer(s) are living with and the health care system at all levels; and the need to be aware of taking into account the context when interpreting the consumer perspective. Therefore, my findings reflect my interpretation of the perspectives expressed by the study participants rather than any “truth” about health care system navigation for people dealing with multi-morbidity. Despite the limitations addressed here, I am confident that my findings reflect a coherent synthesis of the perspective of these patients with multi-morbidity on health care system navigation. Summary In chapter 1 of my thesis I presented the background to this study including issues of terminology and health care context. I identified the problem and purpose for this study; the research questions and underlying assumptions; and considered the significance of the proposed research. In chapter 2 I presented the sensitizing framework provided by a review of pertinent literature. In this third chapter I described the methods used in this study and the sensitizing framework that provided its foundation. I considered the guiding strategy of inquiry, my theoretical location as the researcher, recruitment settings, participant selection, sample size, participant characteristics, data collection, and data analysis. I also discussed  88  ethical considerations, issues of rigor, and potential limitations to my research. In the next chapter, I report the study findings, orienting the reader to the larger health care context as perceived by the study participants, and presenting their perspectives on navigating the health care system to obtain appropriate care for their multiple chronic conditions.  89  Table 3.1 Participant Demographic Characteristics (N = 20)  Gender  n  %  9  45  11  55  > 74 years  6  30  65-74 years  9  45  45-64 years  5  25  Caucasian  18  90  2  10  16  80  English and other  4  20  Rural  3  15  City  17  85  University  7  35  College  5  25  High School  4  20  < High School  4  20  Employed  4  20  14  70  2  10  11  55  Widowed  6  30  Single  3  15  Male Female  Age  Race/Ethnicity  Black Home Language  Place of Residence  Level of Education  Employment Status  English exclusively  Retired Unemployed Marital Status  Married  90  Table 3.2 Participant CKD Data (N = 20)  Stage of CKD  Duration of CKD  Primary Documented Cause of CKD  n  %  1  0  0  2  3  15  3  8  40  4  8  40  Missing data  1  5  < 1 year  1  5  1-5 years  11  55  6 – 10 years  5  25  >10 years  2  10  Missing data  1  5  12  60  Hypertension  3  15  Drug toxicity  2  10  Focal Segmental Glomerulosclerosis  1  5  Other  2  10  Diabetes  91  Table 3.3 Participant Multi-Morbidity Data (N = 20) n  %  13  65  CKD, CVD, DM and no other reported chronic conditions  3  15  CKD, CVD and other reported chronic conditions  1  5  CKD, CVD and no other reported chronic conditions  1  5  CKD, DM and other reported chronic conditions  2  10  CKD, CVD, DM and other reported chronic conditions  92  CHAPTER FOUR: FINDINGS: NAVIGATING THE HEALTH CARE SYSTEM AS SEEN THROUGH THE EYES OF PATIENTS Introduction My intent with this research was to consider the phenomenon of navigating the health care system from the perspective of the patient. I specifically designed my study to elicit the point of view of people living with multi-morbidity, namely, CKD, DM and/or CVD. The participants in my study provided data from the particular perspective of people dealing with multi-morbidity in a Canadian health care delivery context. My findings clearly illustrate the complexity of health care system navigation for people with multi-morbidity. They also underscore the importance of understanding the consumer navigational experience within the context of the health care system as they perceive it. I begin this report by orienting the reader to the perspective of the study participants on the larger health care context within which the research took place. Accordingly, in the first section of the chapter, I provide a general overview of some of the aspects of the health care context that participants drew particular attention to in their accounts. The study participants shared an overwhelming amount of information about how engaging with the health care system is a major concern for them. Many of the themes about the health care system in their accounts were similar to those I had identified in the literature reviewed to develop my sensitizing framework. As such this information they shared does not represent new knowledge, but it does illuminate how this particular set of patients experienced what others have written about. The information they shared also provides the backdrop for the findings reported later in this chapter. In the second part of the report I concentrate on what these participants shared about  93  how people with multi-morbidity deal with the often challenging health care context they encounter. The strategic approaches these participants adopted in order to make “the system” work for them can be grouped into what patients discover they must learn about the health care system in order to take action, and what they discover they can do to strategically manage the health care system to access care and ensure that there is continuity within the care provided by disparate aspects of the system. Collectively these approaches represent a powerful portrait of the extent to which multiple and complex encounters with “the system” produce general feelings of being unsafe and taken advantage of, and the inordinate level of “work” that seems to be necessary on the part of these already burdened and vulnerable individuals to make the system work for them. The Health Care Context In my literature review I identified a number of common themes related to consumers’ perspectives on dealing with health care systems, for example, issues related to continuity of care, patient information issues, and logistical problems. Many of these themes were present in the accounts of the participants in this study too. Seeing the health care system through the lens of this group of patients with multi-morbidity enriched my understanding of the local context, thereby augmenting the sensitizing framework within which I sought to appreciate the phenomenon of health care system navigation from the patient perspective. Continuity of Care Issues As anticipated, the participants in this study identified a number of aspects of their health care context that affected the continuity of their care. These aspects included fragmented health care delivery systems, including fragmented information management  94  systems; and health care interactions. Fragmented systems. All of the study participants described a fragmented and disjointed health care delivery system. They depicted a number of aspects related to the fragmented nature of the health care delivery system that presented challenges and obstacles to navigation, particularly with regard to the continuity of their care. These aspects included the location of health care services across multiple separate places, how patient information is managed, and the additional layer of complexity these can introduce for patients. All but three of the participants, whether they lived in rural or urban settings, described receiving care at multiple, discrete health care locations from multiple, geographically isolated individual health care providers or interdisciplinary care teams. For example, they described attending appointments with their family physician at their private or group office at one location, appointments with medical specialists at one or more hospitals and/or medical offices in other locations, and receiving acute or emergency care at one or more hospitals in still other locations. The remaining three participants, all citydwellers, described receiving all their care (i.e., primary, specialty, acute medical and surgical care, and necessary investigations) at different offices located within a single health care organization. All the participants, regardless of whether their care appeared more or less centralized, raised similar issues related to continuity of care. Participants talked about how isolated health care service locations affected their ability to navigate the system and access care. For example, they described spending considerable amounts of time and effort traveling to and from appointments, compounded by not being able to coordinate appointments, often because providers were in different  95  locations, even if these were within a single organization. Some participants said they considered the time and effort required of them in determining how, why, and when they made contact with their care provider. Also, some participants reported that if a care provider was not located in a convenient place (e.g., parking is difficult to find or expensive) they may avoid going to appointments. Moreover, some participants described how greater distances made accessing their usual care providers for urgent or acute health issues more difficult, and led them to access emergency services instead. All the participants, even those who were fortunate enough to have more centralized health care services, noted how patient information systems were disjointed. Most providers typically collect and document information in separate sections of discrete files/records (e.g., individual files at a physicians’ office, outpatient clinic files, inpatient files, and so on). Communication between health care providers, particularly specialist physicians, seems to occur through dictated consultation notes; therefore, there is a time-lag between events and communication of them to others. All three of the organizations used for participant recruitment are moving to electronic patient records. However, even in these organizations a substantial amount of information is still documented on paper, rather than in electronic health records (EHRs). Furthermore, in my review of the participants’ CKD clinic and hospital health care records I observed discrepancies, errors, and omissions. For example, a physician may list certain past or present medical conditions in their consult notes from one visit, but omit some of these conditions from the list in a later consult note. In some charts there were references to planned procedures or intended investigation of issues, including surgeries, but no later reference to or information about the outcome of these. And in one case the surgeon’s  96  discharge summary stated that the patient was discharged home after uneventful cardiac surgery and recovery, whereas the patient was actually discharged to a rehabilitation hospital from where he was readmitted with serious post-operative complications. The study participants drew attention to how their health care providers located in discrete locations may not be able to access complete, relevant, or up-to-date health care information about them. Even within an organization or office, information about a patient from one time period may not be readily available at another, depending on how the records are archived. The quantity of records may also make retrieval of specific information challenging. Some participants talked about the volume of paper contained in their records, saying things like, “My file over at [hospital A], every time I go there, I’ve never seen one so thick” and “The nurse always complains to me because she needs a truck to carry my file.” Fragmented care delivery and information systems were described as complicating the coordination of patient’ care with potentially negative consequences for patients. For instance, the participants in this study described how, when health care providers do not have the necessary, pertinent information about them, patients may have unnecessary, duplicate, or inappropriate investigations or treatment; experience complications from treatment; need emergency services; and spend time admitted to hospital. The most common example of duplication occurred in relation to “blood work”. Participants who compared their requisitions noted that the tests requested by one provider often duplicated those requested by another. Sometimes this duplication was a result of provider preferences for which laboratory a patient used. As one participant commented, “So it meant that twice this month I’ve got to have blood work because they don’t use the same lab. Because he’s [endocrinologist] at [hospital A], they’re [CKD clinic] at [hospital B].” Investigations may be also repeated if  97  results from earlier investigations at one hospital are not available to health care providers in another hospital. For example, one participant reported having several cardiac investigations repeated. For other patients, the consequences may be more serious than just inconvenience. For instance, one participant, who had been re-admitted after initial hospitalization for acute exacerbation of a chronic cardiac condition, said: I’ve never been in a hospital where one of my specialists was asked anything about my condition. You know, I’ve never had them call up my heart specialist and say, “He’s on these medications. I think he should have this, this, and this.” … And if you’ve seen a doctor for 15 years they’ve got a feeling for what works and doesn’t work for you, you know. In summary, the participants in this study depicted a fragmented, disjointed health care context. The challenges associated with care provided at multiple, discrete locations were described as compounded by disconnected, incomplete health care information systems. The majority of the participants portrayed this situation as potentially problematic to their access to and the continuity of their care. With the exception of a small number of participants who received all their care within a single organization, most of these patients experienced problems with their access to and the continuity of their care. The participants’ accounts illustrated how receiving care within one organization reduced geographic distances between services and increased the potential for clear, comprehensive communication of patient information across services and between providers. Health care personnel. The participants in this study identified several challenges with regard to interacting with people working in the health care system. They described a number of potential impediments to constructive interactions, such as difficulties finding primary health care providers and communication problems. Both rural and urban dwellers described difficulties finding primary health care 98  providers. Two common reasons were given for this difficulty. One was a perceived shortage of physicians or other health care providers like nurse practitioners. Some participants had the experience of being refused appointments with a provider because they were not taking new patients or were too busy. One person living in a rural area explained: One of the things they tell you when you go out of town, if you go to see a doctor, or anyone else, they tell you, “Don’t give up your family physician in [city].” They tell you outright, “We don’t have time here to have private patients.” Several participants noted that finding the right provider was important, that is, a knowledgeable, competent provider. However, the common perception of the participants was that they did not often have the luxury of being able to select a physician. In addition to problems related to finding primary health care providers the participants also spoke about problems related to communication between patients and health care personnel (direct care providers and support staff, such as receptionists and secretaries). The study participants described a range of negative experiences including interactions in which they described various health care personnel as unsympathetic or unhelpful, rude, dismissive, uninformed, unprofessional, and incompetent. One woman recalled an interaction with her previous GP: Not every doctor knows what they’re talking about, and so I finally lost it one day and I said to the doctor, “You know, are you really here for the patient?” And he said, “Well, yes, of course we are.” And I said, “Well, it doesn’t seem like it to me, you know, because you ask me questions, and then you turn around and do just what you want to do. Why do you ask me how I take the medicine, how I do this and do that if you’re not going to continue it?” One man recalled: So they sent me to see a neurologist who didn’t listen. He didn’t listen at all. … I was trying to ask him questions, and relate what was happening and that sort of thing, and he just wouldn’t listen. He just wanted to do all the talking. And then he, as I was leaving, he said, “Oh! Make an appointment for another month.” I never did. I’d be wasting time, you know.  99  Participants also recalled disagreements between physicians that they found perturbing. In some cases these were related to the participant’s care, as one woman recalled, “And I’ve had these doctors fight over me. It’s just horrible. They’re standing up there – they couldn’t make up their mind what was wrong with me. They go back and forth….” In other cases they were related to the care of a family member. The few participants who asked the care providers to explain their decisions recalled being dissatisfied with the answers they received. The participants’ descriptions illustrated how these experiences of disagreements between health care providers challenged their confidence in the health care providers and the treatment they or a family member were receiving. The study participants depicted several challenges to constructive interactions with health care personnel. Many described difficulties finding health care providers, especially primary health care providers, and, despite identifying the importance of having the right provider, also described obstacles to selecting providers. Several participants also described a range of negative communication experiences with a variety of health care personnel. Patient Information Issues The participants in this research also drew attention to a number of possible issues related to the information that is shared with patients. These information issues included insufficient patient knowledge, mistaken assumptions about the information patients may need, and contradictory self-management or treatment recommendations or information given to patients. The potential that patients may have insufficient knowledge for effective selfmanagement was evident in the participants’ responses to the demographic questions I asked them about their health (see Appendix C Questions 12-19). I was surprised that many of the  100  participants were not able to provide answers to many of these questions. Notably, 50% of the participants did not know what their level of kidney function was, even though all had attended a nephrologist and/or a CKD clinic for over three years. I discussed my observation with one of the CKD clinic nurses who noted she also had made similar observations about patient’ retention of information and expressed concern over how many patients do not appear to remember basic information such as disease stage. She said that, consistent with the goal of CKD follow up to educate patients about their chronic kidney condition with the intent to support self-management aimed at improving or slowing disease progression, patients do receive information about their kidney function from multiple providers at each clinic visit. The participants’ accounts also drew my attention to the possibility for mistaken assumptions about the information patients may need. For example, in some of the interviews it was clear that, even for those who knew their level of kidney function, the implications of this were often not understood. The following interview excerpt illustrates this particularly well: P14: My biggest fear is I have no idea how we’re going to deal with dialysis, if I have to have it, because I can’t leave [my wife] alone, you know. I don’t know what we’ll do. But I do know that there are many different types of dialysis, and all I’m familiar with is the stuff I see in the hospitals, and I don’t know how I could go out for three days a week for half a day to get hooked up to a machine, leaving [my wife] alone. It’s difficult. R15: Do you know what your current level of kidney function is like? P: I’ve no real idea. They look at the numbers, and, when I saw [the nephrologist] on Tuesday… he said, well you’re functioning about 50%.... This participant’s level of kidney function (50%) suggests that the need for RRT is not  14 15  P = participant R = researcher  101  imminent as RRT is usually started when the GFR (roughly equated with % function) is less than 15. The participant’s anxiety level suggests that he may not have fully understood this (despite attending the CKD clinic several times a year since his diagnosis of CKD three years earlier, college education, and several family members who were health care professionals) or perhaps he was overwhelmed by the ramifications of the possibility of dialysis in the context of a wife who required ongoing care for a chronic condition and his own longstanding DM and complicated history of CVD. The participants also noted receiving contradictory information from health care providers in different parts of the health care system. This seemed to be a common problem for participants with DM trying to reconcile the dietary advice received from dieticians in the CKD clinic and the endocrinology clinic. As one woman put it: One [dietician] tells you, “you can’t eat too much protein, and you can’t eat too much of this and too much of that.” And the other one tells you, “you can’t do that, you can’t do this.” So it’s very, very difficult to do. The participants’ accounts pointed to a number of problems related to what and how information was shared with them. For most participants insufficient, contradictory, or inadequately understood information appeared to cause anxiety or added another layer of complexity to their self-management decision-making. Logistical Issues As well as depicting challenges to continuity of care presented by fragmented health care delivery systems, obstacles to constructive interactions with health care personnel, and limitations to the way information is shared with patients, the participants in this study described logistical problems as adding another layer of complexity to their challenging health care context. They described these as smaller irritations, or everyday frustrations, most commonly associated with multiple appointments, parking and transport, and time. 102  Appointments. Patients with chronic conditions often have multiple health care providers involved in their care requiring multiple appointments. This was true too of many of the participants in this study. Whereas some participants described seeing only their GP, one or two specialists or specialty clinics (e.g., the CKD clinic, and a cardiologist or endocrinologist), and perhaps a dentist and optometrist, several described seeing many more than this. The most extreme case was an elderly man who provided a list of his medications and his 17 direct health care providers. He noted that he saw his GP, three cardiologists, and one endocrinologist, nephrologist, respirologist, urologist, vascular surgeon, hematologist, dentist, oro-maxillofacial surgeon, rheumatologist, and gastroenterologist four to six times per year. He also saw an optometrist and otolaryngologist once a year for routine follow-up. Many of the study participants drew attention to the sheer number of appointments they had to attend. One woman started her interviewing by stating, “I have a slew of doctor’s appointments” as she rustled through her calendar and pile of appointment reminder slips. Another participant exclaimed, “I’ve got five different appointments next week!” Participants also talked about the time required to arrange and manage these appointments. One participant described the task of managing multiple appointments, saying, “I’m trying to juggle all these balls, and make sure they all stay up in the air, kind of thing.” It seemed that the complexity of dealing with appointment schedules could vary over time. Another laughed quietly as she remarked, “I always have lots of appointments. I just keep checking which did I have to go to, and which day.” Many participants characterized their health care appointments as being a nuisance or interfering with other things they needed or wanted to do. One participant said of the need to  103  go for routine blood work: “Well, it’s a nuisance you know. You’ve got something else to do or whatever….” Then he laughingly continued, “So I’m trying to decide whether to go or not. Anyway, I’ll go one of these days.” Others described the inconvenience of having to make and find the time for an appointment to renew prescriptions or obtain routine blood work requisitions. Parking and transport. The study participants also expressed frustration with health care-related parking and transport. Many participants were frustrated with the high costs associated with parking; one man said, “The parking at the hospital is atrocious. Why should I be paying $20 for parking to come and visit with you?” Another annoyance was the challenge of transport to and from appointments because it required time and effort from themselves, and sometimes their family and friends who assisted them. For instance, one woman who used a walker described making three or four public transit transfers depending on which route she took. Alternatively she had to rely on her husband to drive her to appointments, a minimum 2 hour round-trip excursion. Other participants who qualified for specialized accessible transit services described frustrations associated with this service, especially with regards to scheduling and pick-ups. One said, “It’s very hard to get them. You have to spend the whole day before to get them. Then you have to call back to have it confirmed. It’s a real chore.” The lack of flexibility in scheduling of pick-ups can also mean that a patient has to leave appointments early so as not to miss the ride. If the doctor’s office is running late, this may mean the patient leaves before being seen, as was the case with this participant: I thought, “Egad! I have to be out front for my lift. If I miss my lift – down there especially, it’s so busy – try and get a taxi. And if I do it’s going to cost me an extra 30 bucks to get home. I’m going.” Others described not being picked up for a scheduled ride or being late for 104  appointments. One participant said, “I’ve gone up three times by [special transit] and I’ve had to pay my own way home again because they never came to pick me up.” Another patient recalled, “You would wait for them, they wouldn’t show up! And then they would say you were a no-show….You know, I was never on time for any appointment I had.” Participants with physical disabilities common to people with multiple chronic conditions like DM, CKD, and CVD (e.g., visual impairment, mobility issues caused by neurological/vascular problems, and so on) described other more particular frustrations, such as difficulties associated with moving around a health care site, in addition to transport. Several study participants described the distances between drop-off points and health care providers’ offices as challenging, particularly if there was no seating available along the way. Others with visual impairment talked about difficulties finding their way from one point to another without assistance from others, like family members (particularly spouses), the general public, volunteers, or health care-related staff. Time. Many of the participants’ accounts highlighted frustrations related to time. These frustrations included not having enough time at their appointments to address concerns and having to wait for appointments. A number of participants commented on how some of their health care providers seemed to ration the amount of time per appointment. Some noted feeling as though they did not have time to ask questions and have them answered, the provider was rushing them through their appointment, or the provider was not listening or interested in their concerns. One woman remarked: I don’t think they’re spending enough time with a patient. I know my family doctor – half the time I forget what I wanted to ask him. He’s wonderful. He’s really a very, very good doctor, but I find that his arm is around my shoulders, and he says, “And I’ll see you in two or three months.” And I don’t think that’s enough for a lot of  105  things, you know, that should be checked. Participants in this study also described having to wait for a consultation, investigation, treatment, or surgery. There were several anecdotes about occasions when participants had to wait to obtain an appointment when they felt the wait time affected or might have negatively affected the outcome. Some participants spoke about the time needed for arranging for and attending appointments to waiting at health care provider’s offices for appointments. Their frustration was evident in the anecdotes they related. As one participant said, “As for the waiting time, I’m fed up with that! Yes. The appointment’s at 11 and sometimes I don’t get in until 12.30.” The participants in this study described everyday frustrations predominantly associated with three logistical issues like appointments, parking and transport, and time. These frustrations contributed to what they described as an already challenging and complex health care context. How Molehills Become Mountains Seeing some of the challenges and obstacles of the health care context through the eyes of the participants in this study augmented the sensitizing framework with which I had entered into this research. I became aware that, for patients with multi-morbidity, how these contextual challenges played out was more complicated than my presentation of contextual findings to this point may suggest. The participants’ accounts speak to how seemingly small challenges or obstacles within the health care system can become magnified for patients dealing with multi-morbidity for a number of reasons. Thus, what may be perceived as molehills by people working in the health care delivery system may be experienced as mountains by patients dealing with multi-morbidity. One way that molehills become mountains is that a single small challenge may be 106  compounded in the context of multi-morbidity. For instance, a parking fee of $3.50 per half hour may seem reasonable, but in the context of the care needs of someone dealing with multi-morbidity this cost can multiply. One pensioner described attending at least four to six appointments per month. For each of these appointments he was at the hospital for between 1 and 4 hours – depending on which specialist he was seeing, the type of appointment (single provider or clinic), or the type of investigation he needed (blood work, CT scan, etc.). This man reported that his monthly parking cost for these appointments was often around 80 dollars or more. Moreover, finding ways around a seemingly small challenge like parking is not always easy, or even for some people possible. Another man said of trying to avoid hospital parking costs, “You see this is the whole problem. These hospitals here, they’re so contained, that you can’t park outside and walk in….” As described in the previous section, alternatives like public transit may be inconvenient, unreliable, or unmanageable for some patients, and taxi services also expensive. While relying on friends or family for transport to and from appointments may be an option this demands time and energy from the person giving this assistance. Another way that molehills become mountains is through the accumulation of several different small challenges. The challenges associated with appointments are a good example of this. The task of managing health care appointments is compounded for patients with multi-morbidity by the need to manage multiple appointments with multiple providers. As one man explained, “You get too many appointments. You get one appointment after another after another. Your calendar’s full of appointments, well, not quite, but it feels that way.” Now add to these appointments the small challenge of going for blood work testing  107  prior to several of these appointments; a challenge potentially exacerbated by health care provider preferences about which laboratory the patient should use. The latter may lead to the patient going to two or more laboratories for blood work testing. Then, if the patient has mobility problems there may be additional time required to arrange for transit to appointments and for laboratory testing or other investigations. Finally, when patients get to their appointments, often after a considerable commute, they may have to wait to be seen, one said of her most recent CKD clinic visit: [The RN] came out for a while and said, “I’ll see you later.” But it takes so darn long. It’s – you get down there around 8.30, and you’re not out until sometimes after noon. After 12 o’clock. So it’s a long haul, you know. Moreover, most patients need to fit their health care needs into often already busy, complicated lives. These lives include work and family demands that also require time, energy, and work to sustain. Too, as highlighted by the accounts of some of the participants in this study, some patients may be the primary care provider for other family members who also have chronic conditions. One man described this care-giving responsibility as, “a very difficult situation” that “people don’t understand.” This participant described the complexities of managing shift work, his own and his wife’s health care appointments, grocery shopping, housework, cooking, and personal care for his wife. Managing all of this appeared to be made even more challenging by his limited vision caused by complications of DM, and residual muscle weakness from a prior stroke. So, from the viewpoint of the patients who participated in this study, their multiple health conditions compound the effect of such obstacles or challenges because they necessitate multiple interactions with the health care system. The chronic nature of these consumers’ health conditions exacerbate their frustration related to such obstacles or challenges because they have to deal with them repeatedly over time. Lastly, the small health 108  care system-related issues may make an already complicated way of life more difficult to deal with. Thus, molehills may become mountains. The intent in this first section of the findings chapter was to depict the health care context through the eyes of the patients who took part in this study to frame their perception of the challenges of navigating the health care system. The perspective of theses participants drew particular attention to the local health care context and related issues. These issues include fragmented health care delivery systems, including information management systems; impediments to constructive interactions between patients and health care personnel; problems related to what and how information is shared with patients; and everyday frustrations associated with health care-related logistical issues. Seen through the eyes of the study participants it is apparent that though taken individually each small challenge may not be a big deal, taken together the small challenges can become enormous for patients dealing with multi-morbidity as they attempt to navigate their health care situation. Navigating Rough Terrain Life is seldom straight-forward for anyone and dealing with two or more chronic conditions makes it less so. The patients who participated in this study all needed to seek and receive care for multiple chronic conditions within the difficult health care context just described. The story their narratives tell is one in which patients accommodate a health care system that is not designed for people with multiple chronic conditions and health care providers who are educated, and may prefer, to care for conditions affecting single body systems. As the participants depicted the many challenges they encountered related to their health care situations, they also revealed a wide diversity of cracks into which one might fall,  109  although the participants in this study, for the most part, had learned enough about the health care system to deal with the challenges they encountered and avoid falling into the cracks. The rich and detailed data collected in this study provide a window, from their perspective, into how they were managing to obtain the care they need, because of their very active and strategic efforts to make the system work for them. Discovering What You Must Learn about the Health Care System The accounts of the participants in this study depicted their unending discovery of the health care system (see Figure 4.1). What these participants needed to learn about the health care system was not always directly apparent to them; rather, they discovered what they needed to know experientially. The participants described how, over time and through their varied encounters with their health care context and their exposure to the experiential learning of others, they became increasingly informed about the health care system. Though chance played a considerable role in what they discovered, sooner or later all the participants discovered what they must learn about to enable them to bridge the gaps in the health care system. Learning about health care delivery organization. Learning about the complex social structures within which their health care was delivered was an ongoing task for the participants. As they learned about the health care context in which they received health care, sometimes only through repeated encounters, they discovered that the “system” comprised different parts that did not necessarily work or connect in the way they had assumed. The participants’ learning about particular pieces of the health care system with which they came into contact happened through their assimilation of assorted system-related  110  information from successive encounters. For instance, one woman recalled realizing that what she originally understood as visits to the nephrologist’s office were actually CKD clinic visits: But I gather it’s a clinic, which I didn’t know when I first started going there. That it’s not just a doctor’s appointment that you go to. I didn’t realize it was a clinic. Yeah, it was probably my second or third visit in; I suddenly realized it’s a clinic! This woman gradually realized that she was attending a clinic as she integrated her observations about the presence of multiple health care providers from different disciplines (e.g., dietician, nurse, and nephrologist), the many patients in the waiting area outside the nephrologist’s office, how long each appointment lasted because of seeing other health care providers besides the nephrologist, and so on. As the participants were referred to specialty clinics for various chronic conditions they learned that they had access to resources beyond those offered by the specialist physician alone. However, many of them also realized that these clinics usually catered to only one chronic condition, such as DM or CKD; therefore, sometimes the advice and recommendations these patients received were contradictory to those they received from other sources for other conditions. Most of the participants also found that clinic appointments tended to be lengthy because of the additional people they had to see. As they sought care for their chronic conditions the participants learned how the various organizational structures of different physicians’ practices could affect care delivery in various ways. Some of the participants learned that group and solo practices functioned differently – with group practices often giving them greater access to a physician with access to their file. Others discovered that practices that included students with differing levels of expertise and autonomy (e.g., residents) or nurse practitioners functioned differently from those that did not, because of requirements for supervision or increased access to a health 111  care provider. The participants also had to learn about billing practices as these affected how practices operated with regard to providing services not covered by the provincial health insurance plan, like telephone contact between patients and physicians or other health care providers, such as pharmacists. The participants learned by trial and error whether the practice billed patients privately for these services, provided such services without billing the patient, or simply did not provide the services. In addition, all the participants had to learn that many variables affected the timing of the investigations (e.g., Doppler scans, blood work, or X-rays) they may need to have done prior to physician or clinic appointments. They needed to learn how the location of the physician’s office relative to the laboratory or radiology suite might affect the time needed to report results. Proximity between service locations seemed to reduce reporting time, for example, some participants noted that if the physician’s office was located at the hospital they could arrange to have blood work or an X-ray done at that hospital as little as an hour before their appointment with the physician. However, most participants also learned not to rely on proximity of location, like the patients who learned that Doppler scans or CT-chest scans had to be done several days before their appointments with their specialists as the results were reported to their specialists more slowly, perhaps because of time lags between investigation and interpretation, even though the specialists were located in the hospital at which the investigations were done. In addition, all the participants had to learn about differences between hospitals and how they were inter-connected to appreciate differences in how these organizations functioned. Through experience, the participants learned that the range and diversity of programs, services, and resources varied widely between community hospitals and academic,  112  tertiary hospitals. For example, one elderly woman, in reference to problems she had encountered in receiving prompt, appropriate care for an acute exacerbation of her chronic peripheral circulatory condition, said she would prefer to travel further to a hospital in the city than go to her community hospital as it was “not a modern hospital at all!” Participants discovered that the degree to which different parts of the health care system were connected could explain various organizational variations across the system, such as why results might take more or less time to report or the access that providers had to information about a patient. For instance, they learned that when hospitals were networked organizationally, rather than functioning as independent organizations, the transfer of information between the linked sites was more effective and efficient. In contrast, several days were required to transcribe and mail the results of investigations or consultation reports to health care providers outside of an organization in which the investigation or consult took place. Also, because some hospitals did not automatically send results to physicians outside of the organization, participants had to telephone the clinic or ordering physician’s office and request the secretarial staff to fax the results. Similarly, participants discovered the results from laboratory tests were communicated in a more consistent and timely manner by one laboratory than another because of the way in which it was done. For instance, one man, who lived rurally, said, “If you go to [community] blood clinic … it takes fourteen days to get the results from there to here, whereas if I go to the [local] hospital it’s the next day.” On asking he discovered that the local hospital used a courier to send the results whereas the community laboratory used the regular mail service. The participants’ many dealings with various parts of the health care system brought  113  them face-to-face with the fragmented organization of the different parts of the health care system they needed to interact with across the health care system. For instance, participants recalled being dismayed to learn after their discharge from hospital that, despite them having provided their physicians’ names to the hospital on admission, their GP or specialists “had no notion” they had been hospitalized. Moreover, the participants realized the impact on them as patients of major changes in the way in which their health care services were organized varied depending on how these affected the way that services were delivered. For example, during this study, in one of the organizations from which participants were recruited, the hospitals reverted to separate organizations after several years of working towards amalgamation. The participants who were recruited and interviewed during disbandment of the hospital network within which they received care were quite relieved to learn that this organizational change would not affect them as patients because the way in which services were organized (e.g., location of providers, computerized information systems, etc.) was not changing. In contrast, other participants learned through experience that hospital closures or organizational restructuring could result in a loss of access to services, programs, and resources. One older woman’s experience captured the sometimes devastating effect of changing health care organizational circumstances on patients. She recalled that when she had previously had a GP who along with a variety of other physicians had an office in a medical office building across the road from a small acute care hospital, “It was a more personal arrangement. Each doctor knew the other doctor, you know, and they looked after you like you were a part of the family. And it was great!” However, the hospital had closed and many of these physicians, including her GP, had retired. Although she had initially assumed that  114  her care would not change substantially, because she moved into a retirement home with nursing and medical care, she was finding it much more difficult to know how to access the care she needed, saying she felt she had “been thrown to the wolves”. As a consequence of their repeated encounters with their health care context, the participants discovered the different types of services offered in various parts of their health care context, how these various parts of the health care system were organized, and how they linked together in different ways. Learning to differentiate between health care providers. Not only did the participants learn about how the health care system was organized structurally, they also realized that they must learn about their health care providers. They learned that they needed to know who the people involved in their care were, as well as how knowledgeable and competent they were and how they approached care delivery. Several participants observed that more often than not it was difficult to identify the professional designation of health care providers who were not previously known to them. Having “no idea who’s approaching you” was described as disconcerting, as one man put it, “Someone walks in with a needle, and … thank God, looks at your wrist bracelet, and starts to do something to you. You don’t know if it’s the cleaning lady or the head of surgery.” The participants noted that health care providers often did not introduce themselves or wear distinguishing devices to make it easier for patients to identify them. Although doctors could often be distinguished from other personnel by their white coats, participants noted the presence of a white coat was insufficient, as “you don’t know if you’re dealing with a fourth year medical student, or a full-fledged resident” or the head of a department. Through their experiences participants also came to the realization that it was not  115  enough to know the professional designation of the health care provider because the health care providers they encountered were not equally knowledgeable or proficient. One participant, who clearly saw the funny side of some of his sometimes “scary” and uncomfortable experiences, began to laugh as he recalled being taken to an outpatient clinic: I get in there, and two minutes later I’m in another room, and two minutes later I’m in a room all by myself isolated with five nurses twittering around me. And my heart rate had gone down to 30, and they’re sitting there trying to figure out how to use the [defibrillator], and I can hear them saying, “Well, I’ve never done it.” “Do you know how to do it?” … it was funny! They didn’t have to shock me back to life; the doctor did show up in a hurry and they sent me off to [hospital A] with a nurse beside me in the ambulance. I never – it was the funniest thing I ever saw in my life [wiping tears of laughter from his eyes] – all these nurses absolutely panic-stricken! In the same vein he noted: “In most hospitals you’ve got your IV nurses, and man, they know what they’re doing, but the average floor nurse, she’s either good at it, or she isn’t good at it.” Furthermore, participants noted that their comfort with the care they were receiving was enhanced when health care providers were willing to admit they did not know something or lacked proficiency, and ask for assistance or make appropriate referrals. In addition, the participants learned that the chronic nature of their conditions required them to have long-term relationships with their care providers, because of this they valued a “caring” and “compassionate” approach to care almost as much as the provider’s knowledge and proficiency. The participants learned to appreciate health care providers who took a personal interest in them, listened to them, offered information and answered questions comprehensively, and respected and trusted the patient’s opinion. The participants recognized that developing good working relationships with health care providers took time, as one man described: I’ve been going to [my GP] for umpteen years. My father went to him…. I call my doctor by his first name. We’ve know each other that long. We’ve had the same things, and grown up with the families and everything else. So it’s a very good relationship! And I can confide in him. I can say anything to him. I can question him, 116  and it all comes out alright. I couldn’t do that anywhere else. Realizing that health care providers could be markedly different in approach to patient care could be an eye opener. For instance, one woman recalled how she felt when she discovered what constituted an excellent physician when: “I finally got sent to [this gynecologist], and he was just fantastic! I thought, “Oh, my God! I didn’t know you made doctors like this!” This woman described this doctor as someone who listened, personalized his approach to her care, and valued her opinion. Figuring out that health care providers defined the scope of their practice differently, the participants were able to understand the role that their health care providers could or would play in their care. The participants particularly valued providers who “look[ed] beyond their own little spot”; the participants commonly identified these providers as their GP, but they also mentioned specialist physicians and other health care providers. These providers were described as maintaining a comprehensive record of all the pertinent information regarding the participant’s health care history and ongoing care. One woman observed of her GP, “And like he says, he looks at what they’re not dealing with, and that’s what he brings into it, because like it all goes together to make a whole.” In addition, providers like these were depicted as assets in coordinating and facilitating care across multiple providers and health care locations, that is, making sure “the right hand knows what the left hand’s doing”. One woman who called her CKD clinic RN “a God-send” described her as that “go between,” that “bridge.” Discovering that some health care providers were “better” than others and that health care providers, even with the same professional designation, were not interchangeable affected the participants’ assessment of and attitude towards who was involved in their care.  117  Learning about “rules”. In the course of their interactions with different parts of their health care context the participants encountered “the rules” or the “system” regulating how patients interact with the different parts of the health care system. The participants identified how things were regulated by speculating about explanations for their health care experiences. The participants figured out that there was a system regulating their access to health care providers. For instance, they learned that access to their physicians was controlled by the physician’s secretary or receptionist. Some of these support workers made it difficult for patients to talk directly with the physician by telephone, asked for information about why they needed an appointment so that they could decide the urgency or otherwise of their call, and so on. One man said, “And do you know how difficult it is to get through a secretary? They’re very protective of their people.” Another described a recent frustrating interaction with his GP’s secretary: “The problem there is the secretary. Not the doctor. No, if it was the doctor to talk to I could get in, but the secretary is asking me a questionnaire. She says, ‘What’s wrong? Why do you want –?’” However, the participants discovered other rules that increased their face-to-face contact with health care providers. For instance, participants learned “a lot of doctors … won’t answer your questions on the phone. They want you to make an appointment.” Participants also discovered that many specialist physicians required prescription refills to be done by the patient’s GP, so, these participants had to make appointments with their GP to obtain these prescriptions even though the GP was not the prescribing physician. Many participants viewed such appointments as unnecessary, or as adding another layer of difficulty to accessing the physician, because they had to wait for an appointment or take the  118  extra time to visit their provider. The notion of rules could cause frustration when participants struggled to understand why things worked the way they did. As one man expressed it, “And there’s no rhyme or reason to it…. Some things seem to work very well. Others take forever…. And I don’t understand that.” Another participant recalled how he had once tried to obtain an appointment at a diabetic education program close to his home. He had been refused because he did not want to change endocrinologists to one that worked at the hospital where this program was located. He could not understand why they had this rule when his purpose in attending the diabetic education program was to obtain education and supplies, not the medical care he received from his long-time endocrinologist at another hospital further away. Similarly, a man who had experienced a smooth transition to a new nephrologist when his first one left the hospital struggled to understand why this was not happening in another department of the hospital: And I was supposed to go this October, because my blood sugar is pretty high…. And I cannot get in. So I don’t know what to do…. It is frustrating that I can’t get in to see the doctor. I used to see [original doctor] every three months. Moreover, the participants discovered that access to health care providers, particularly specialist physicians, was also regulated when they learned that they required a referral from another physician. As one participant remarked, “I know people talk and they say, ‘Go and see this particular doctor, they’re top of the line.’ But in this day and age you have to be referred.” From the participants’ perspective, rules about referral meant that they may need to attend additional appointments with their GP or other referring physician. Also, the referral process would almost certainly add a delay to obtaining an appointment with the specialist. However, having multiple chronic conditions could also make it possible to get around rules 119  about access to specialist care. For example, one participant declared, “I’m special! … So in that respect I get access to things a lot easier, which is nice.” She went on to explain that, although her gynecologist had discharged her friends to their GPs, because “now for your regular check up you’re supposed to go to your family doctor”, he continued to see her for routine care; she attributed receiving this specialist care to her chronic conditions, DM and CKD, as opposed to gynecological necessity. Similarly, some participants experienced how organizational rules can hamper patient access to proficient providers. As one man portrayed in the following story: The one thing that I find very annoying and different in various hospitals, [is some] will not let a floor nurse get help setting an IV, she has to set for her own patients. Now everybody knows if you’ve got a floor full of nurses, you’ve got one or two girls there that can get blood out of a stone and the rest of them defer to them, and if they’ve got somebody that they’ve got difficulty with they go get that nurse, that knows how to do it, and they’ll change her bedpan if she can start the IV. It’s part of the game, and she goes whack, whack and it’s in. I can remember sitting there at [hospital B] and the nurse and the helper took seven tries to get it started. In the end we were all howling with laughter, it was so damned funny, because we couldn’t get the damned IV started. You know, in the end they put the damned thing in there and when they took it out it was a corkscrew [laughing]. But what I’m saying is they would not allow the girls who know how to do something to come in and do the difficult task. Participants noted that some parts of the health care system tried to regulate the length of appointments. As one participant’s wife said, “I understand they were trying to limit the time a doctor could have with a patient. I think [the doctor] said fifteen minutes. Well, 15 minutes isn’t very long.” However, she went on to say “but we’ve never had that experience of being cut off”. Moreover, some participants discovered that there were rules governing the role that physicians might play in their care. For example, they noted that physicians had to have admitting privileges at or be invited by the attending physician to become involved in a patient’s hospital care. The participants also discovered rules governing their access to emergency care. One 120  man described how he learned through experience that, if he calls the emergency services, they will only take him to a hospital within a certain radius of his home, or his location at the time of the emergency. Having experienced being taken by ambulance to a community hospital where they had no access to his prior medical history or current treatment, and did not contact any of the providers involved in his care about his long-term severe cardiac disease, he said, “…So I really think if it was anything but extremely serious I’d send the ambulance away and call a cab. And I’d go to [hospital A] regardless. I mean, that’s where the bulk of my doctors are …” Another participant recalled arguing about the ambulance’s destination with the emergency personnel: The ambulance wants to take me to [community hospital]. I say, “No, you take me to [academic hospital].” I refused to go, and we had a big, big argument…. and I said, “I won’t go. If I’m going to go I’m going to go back here [academic hospital], because this is where they’ve got to take care of me. Not [community hospital]” “But there’s no room – they’re booked up solid there at their emergency.” I said, “I don’t care.” So what happened is, they convinced me to go to [community hospital]. I’m there for less than 10 minutes and they call [academic hospital] and say, “Look you have to take him. We can’t take care of him.” They never listen. As this example illustrates, the patient’s wish to go to the academic hospital was overridden by the rule but vindicated on arrival at the emergency room of the community hospital. Nonetheless, this experience was frustrating for a patient who felt that the opinion of experienced chronically ill patients is typically disregarded by health care providers involved in emergency care. As was the case for several participants, one woman described how she discovered the largely unspoken expectations for how patients should interact with and gain access to the health care system, “[she] just figured out that that’s the system. ’Cause there is a system.” The participants discovered that learning the rules meant “you can get things done more efficiently if you sort of follow the rules”. Nonetheless, as the examples given here indicate,  121  the participants also discovered that health care providers could choose to extend appointment times, reroute emergency vehicles, and so on; that is, under some circumstances the rules seemed somewhat flexible. Learning about provider preferences. In addition to learning about how their interactions with the health care system might be regulated, the study participants encountered the individual preferences of health care providers. These preferences affected the participants in a variety of ways, and became an important element in their understanding of how the system worked. Accommodating physician preferences for certain laboratories influenced how these patients interacted with different parts of the health care system. For instance, one woman described having to make extra trips to the hospital to have blood work done at the physician’s preferred lab rather than going to her community laboratory which was considerably closer. On the other hand, another woman who understood her nephrologist’s laboratory preference as being related to poor result reporting still used her community laboratory but took a copy of the results with her to her CKD clinic appointment; in her case, obtaining the results necessitated an extra appointment with her GP. In general, health care provider preferences were perceived to be absent of consideration for the impact on the patient. For instance, several participants recounted how their nephrologist did not realize that their request for the patient to use a specific laboratory for their blood work meant they would experience additional discomfort related to venipuncture, because their GP preferred to do his or her own venipuncture. Likewise, the participants felt that health care providers did not take into consideration the extra time, effort, and inconvenience to the patient when accommodating provider preferences. For  122  instance, one man considered having to make an office visit to his vascular surgeon to discuss the results of his Doppler studies “a waste of time.” In addition, participants learned that health care provider preferences about the type of patient they have in their practice could affect their access to care. For instance, some participants discovered health care providers that preferred not to care for patients with multi-morbidity, complex health conditions, or additional requirements like disability insurance reports. The notion that a health care provider might refuse to care for a patient on the grounds that they were “too old”, “too sick”, or “too much work” was hard for these participants to understand or accept. The participants also discovered that physicians seemed to have their own “network” or “chain” of specialists, that is, “they refer people to certain doctors.” The participants noted that, in ideal circumstances “it clicks, and it all goes together, and everything kind of blends together.” However, the participants were also aware that some physicians’ networks or chains may have more experts who are well-regarded in their substantive area than others. In one man’s opinion: The worst person to pick a specialist for you is your own GP. Especially if your GP is older and has been out of training and out of the hospital system, essentially for more than 15, 20 years, because they don’t know who the hot shots are. Furthermore, the participants noticed that specialists seemed to respond more quickly to referrals from some sources than others. For example, some participants noticed that referrals made by a specialist whose office was located in a tertiary hospital resulted in consultations at an earlier date than those made by their family physician located in the community. Learning your expectations may be unrealistic. The realities of the health care context this group of patients encountered often did not match their initial expectations as consumers. As they learned more about the various 123  aspects of their health care context the participants realized that their expectations of a part of the health care system or their health care provider(s) had been quite unrealistic. Most participants had what they considered reasonable expectations as regards prompt access to care or services. For instance, one woman had expected that calls to one specialty area would be returned promptly. However, the reality she encountered was that the several telephone messages she left over a period of three weeks were not returned. She was able to understand that her expectations had been unrealistic when she eventually learned that there was only one nurse in this area and no additional staffing if that nurse was absent for any reason (e.g., vacation, sick leave, etc.). Similarly, many participants expected to obtain an appointment within a reasonable time frame when they were referred to specialist physicians or for investigations and were surprised when it took weeks or months to obtain appointments. Having realized that their expectation for quick access was unrealistic, they were sometimes astounded when they did get in to see a specialist quickly. This happened to one woman when her optometrist said he was referring her to an ophthalmologist. She returned home later that same day to “a message from this doctor’s secretary -- “If you can come down by two o’clock, [the doctor] will see you.” It was already after two o’clock”, and she had certainly not expected a call so soon. The participant continued: They tried to reach me when I was at the optometrist but she couldn’t get through.… Well, I called this doctor’s office and they got me in for Thursday morning [i.e., two days later] at eight thirty. So that was really good. And I had all the tests done on that Thursday and he even did the first laser for me that day. Participants also expected that the specialist physicians who were involved in their ongoing care and were well-versed with their medical histories would participate in their care should they be hospitalized. Again, as they learned about how emergency and hospital  124  services were regulated, they realized that these providers would be unlikely to be involved in their care should they be hospitalized in a different part of the health care system. One man noted, “If you were at [hospital A] – they’d only consult with the specialists involved in care at [hospital A], but they wouldn’t consult someone at [hospital B] or [hospital C].” The group of patients participating in this study expected that their health care providers would have access to all their relevant health care-related information. As the participants learned how patient information was managed across the various parts of the health care system, they realized that their expectation did not match the realities of a disjointed patient information management between different health care system elements. One man remarked: I’m pretty much aware that it isn’t happening. I’m very much aware – I know that the last time I was in to see my heart doctor, he hadn’t been told anything, or got any sort of a report, and then it was strictly cursory. He couldn’t tell any of the tests they’d done. None of those tests were available to him. Just we’ve seen your patient and we’ve done this, that, and the other thing to him. And that was a month after I was released from the hospital. Participants also discovered that the nature of the health care system meant that their knowledge from one situation did not always apply in another, that is, they learned that their acquisition of knowledge about the health care system was not necessarily incremental. It was often surprising and disconcerting to these patients to discover that they could not always transfer their learning from one situation to another, and led to the sense that the health care system was unpredictable. Through experience the participants learned that their initial expectations of the health care system were not always congruent with the everyday realities of how the health care system works. The more exposure the participants had to the health care system the more likely they were to encounter situations in which their expectations were not met. As a  125  result, they used what they learned about the health care system to adjust their expectations as consumers of the health care system, in many cases lowering their expectations. Learning not to trust in the health care system. The more they learned about the health care system, the more reservations many of the participants developed about trusting that the health care system would be there for them when they needed care. Many participants were uncertain that the health care system could be relied upon to support their access to timely and appropriate care, or the continuity of their care. Some participants expressed concern about what they might do if, for some reason, they needed to replace a health care provider, particularly a physician, who played a key role in their health care. For example, one man said, “I’ve got a GP, and I don’t know where I would turn to find one if they closed their practice. I don’t know what I would do.” Other participants had actually experienced difficulty replacing or gaining access to a physician. For instance, one man described how his endocrinologist had moved and he was struggling to make a first appointment with her replacement, “And I was supposed to go this October, because my blood sugar is pretty high. And I cannot get in. So I don’t know what to do.” Several participants recalled their struggles to replace their GP after the patient had relocated, or their GP had retired, moved away, or died. One man recalled: I’ve had a problem getting another GP. They don’t want to touch me…. Three doctors before I finally found a doctor…. They don’t want to be bothered. I said, “It’s nice. Just let me lie down and die. That way you don’t have to bother with me.” Another participant remembered, “Then my doctor retired. He couldn’t get anyone to take over his practice, so I was a long time without a doctor…. You’re number 600 in a little town like this.” Participants also became leery of a health care system in which they realized mistakes 126  can and do happen. One man said: I think perhaps one of the biggest causes of death in hospitals is mistakes. Everybody makes them. So try and avoid them if you can. That’s not any ill-will on the part of anybody, it’s just many of them are over-rushed or under-trained, you know. For some participants the possibility that mistakes might happen to them was borne out by their experiences. One man recounted his cardiologist’s comment, “You spent a week in the hospital, because of that doctor’s mistakes.” Another man said of a hospital admission during which he experienced a number of post-surgical complications, “It was just one mess after another. And that’s the health care system in a nutshell.” They also realized that providers with specialty knowledge in one area may not “have an awful lot of up-to-date knowledge on [their] other problems”. As a result they “found that you get mixed information from different people”. The possibility that a physician treating one chronic condition might not be aware of the impact on another could be worrying, as one man voiced: As you can imagine, trying to get my medications right is a pretty delicate balance. I’ve got a lot of medications – and you give me the wrong thing, and the potassium goes haywire… too low potassium, kills me with my heart, and too high potassium, kills me with my kidneys. And it’s that way throughout. For many participants, the idea that the health care system may not be there for them when they needed it was compounded by a sense that no one would listen to them if they voiced concerns about their health or their care. For instance, one man recalled, “If they had listened to me, maybe they would have caught some of these things earlier.” This group of patients was understandably unsettled about seeking and receiving care in a health care context they did not completely trust to provide the right care at the right time, and to support them in navigating their complex situation. The participants’ accounts portrayed a common overwhelming sense of concern that  127  the way in which the health care system is set up required a great deal luck to negotiate successfully. Their sense that fortune played an important role in how things played out was evident in the concerns they expressed about the vagaries of a health care system they perceived as unsystematic, and therefore, unpredictable and unreliable: not looking out for vulnerable members of society; not providing equivalent access to care for everyone; and so on. Thus, many ascribed their positive experiences within this to being in the right place at the right time, or having the good fortune to know the right people, or just being “lucky”, rather than effectiveness within health care system design. Speculating about what you learn. As the participants reflected on what they knew about their health care context and began to make sense of their health care experiences, they also speculated about what they learned. The participants attempted to find reasons for what they experienced by speculating about how funding for health care and politics affected how the health care system functioned. Several participants speculated that many health care providers, particularly physicians, were in practice first to make money and then to provide patient care; that is, they concluded that the patient was not the primary focus of the provider. Anecdotes from this group of participants reflect this perspective. For instance, one man grumbled: I don’t know what it is about the medical profession, but they seem to have a mantra, “See me once a month.”… And I think it’s driven more by the monetary aspect rather than by the medical one. I’m not saying in all cases, but in a lot of cases I think it’s just a monetary thing. That they’ll see you, because it’s just a matter of five minutes and you’re out. Other participants suspected the reason they had to make an appointment with the physician when a telephone call would suffice was that “they [the physician] can charge [provincial insurance scheme].” There was a perception that the physician’s financial benefit from an 128  appointment (rather than a telephone call) was at the expense of the patient’s time and convenience. For instance, the man who accommodated his vascular surgeon’s preference for an office visit post-Doppler study commented, “We could do this all on the phone but I keep him happy [laughing]. It probably helps the fees.” And someone else, after recounting several recent negative experiences of interactions with health care providers, commented angrily: Because evidently the medical profession here, if you want my opinion, they don’t give a damn about the ordinary person. They have a person with a chronic disease, you go and you’re just money in the bank and that’s it. They don’t really care if you live or die! It doesn’t sound nice to say that, but you’re asking me and I’m telling you. Some participants surmised that the high cost of parking at the hospitals they attended benefited the organization at the expense of the patient. One retired man who complained, “The cost of parking really annoys me! It’s out of proportion!” went on to speculate that “it’s a way of the hospital raising funds – for research or whatever they do with it. It’s a backup system of support.” Some participants speculated that health care under-funding (e.g., for provider remuneration, health care provider education, funding for health care services like hospitals, and so on) explained why the health care system was “understaffed”; that is, they reasoned that “more nurses”, “more doctors”, and “more nurse practitioners” are needed. One man, trying to explain why his GP had not detected his rising creatinine and hypertension earlier, suggested that “there are far too many patients,” and the “a lot of doctors are too busy”, because “[doctors] don’t make enough money on each patient.” Another participant suggested that “our health care system would probably be a lot more efficient” if it was better funded. The participants speculated about the pros and cons of having a publicly funded 129  health care system. A few participants (who identified themselves as being able to pay for their health care) thought “we would still get better attention, if we could pay our way privately for doctors. I think you would still get a better doctor. Doctors would be more interested in you.” However, even these patients said things like, “It [the health care system] is good and it’s bad. When I hear what my son is paying for his insurance in [the USA] I think … our [provincial health insurance] is wonderful”, and, “I can go into any hospital, any doctor….They don’t say, “Do you have insurance. You’re in the wrong hospital.” But in the States you’ve got to have money.” Participants noted that, although some patients may be able to afford to pay privately for health care, many others would not be able to afford even seemingly small charges, as one man remarked: And they talk about making it for a fee. If you go to the doctor, you should pay a fee. Well, if you can afford the fee, maybe it’s good. So if you pay five dollars from your pocket; instead of [provincial insurance scheme] paying twelve, they’re only paying seven. But – what about the family who can’t afford five dollars? You’re bringing in three kids – that’s 15 dollars. This type of thing – it’s impossible! Several participants, who identified themselves as able and willing to pay for improved access to health care in the limited situations where this was possible, expressed concern about others who could not afford to do so and the associated potential for health care inequity. The participants also hypothesized that some of their experiences could be attributed to different parts of the health care system, or groups of providers within the health care system, manipulating or trying to exert influence or power over others. For instance, one man said, “They [the hospital] won’t send copies to non-resident doctors…. I don’t know what’s behind it, but I’m sure it’s doctor politics, which I don’t pretend to understand.” Another man recalled his interaction with the internist who was consulted during his late wife’s hospitalization: 130  She said, “Oh, she should not be on, definitely not be on saline.” Because that was her expertise, I said, “Are you going to tell them that?” And she said, “Well, I can only recommend. I can’t tell them to do it. I can only recommend.” He understood that the internist took this position on directing his wife’s care as being “Because she wasn’t part of the hospital”, but could not understand how the expert consultant was not able to do more than “recommend” a course of care. The participants in this study needed considerable knowledge about the complex social structures in which they sought and received health care to access and ensure continuity of care for their multiple chronic conditions within the larger context of their lives. In their encounters with the health care system, the participants were provided with directions, support, and information about managing their individual chronic conditions, whereas they were largely left to figure out what they needed to know about the health care system on their own. Correspondingly, participants’ accounts depict how it took many, varied encounters with the health care system for the participants to gradually figure out the key aspects of the health care system that they needed to know about. The participants described becoming aware of how the health care system was organized into different, variously connected parts, staffed by health care providers who differed in competency, knowledge and approach to patients, and that their interactions with the health care system were influenced by various rules and provider preferences. With this awareness, many participants discovered that their expectations of the health care system did not always match with reality, and no longer implicitly trusted in the health care system to be there for them. Consequently their perception of their role within the health care system shifted from one in which they took “a back seat”, trusting in the health care system and their health care providers (”Because they’re supposed to know what they’re 131  doing. They’re the professionals.”), to realizing that they needed to strategically manage what was happening to them as they interacted with the health care system. Discovering How to Manage the Health Care System As the participants considered their experiences within the health care system and posited explanations for why the health care system worked the way they experienced it, their perception of the health care system and their role within it altered. Recognizing that “we’ve got a good system, but it’s not perfect”, they realized that, in the words of one woman: You have to learn what works for you. … You have to have your wits about you. ’Cause it is, you sort of have to have a little strategy. Sort of going through it, it’s tough. And you have to know how they operate. The participants discovered they could use their understanding of their health care context to anticipate what might happen in their encounters with the health care system and to identify and plan tactics to influence the course of their health care events. The participants also described how they were able to apply their knowledge and understanding of the health care system to find ways around the inefficiencies, obstacles, or gaps they detected within the system. Just as these participants had to discover what they needed to learn about the health care system on their own, so too they discovered experientially how to manage the health care system (see Figure 4.2). Deciding to act. The participants’ accounts portray how they used their understanding of the health care system to assess and try to influence their health care experiences. Participants said things like, “I think it’s up to you to try and orchestrate it yourself, because doctors are really busy, and they don’t always remember to do stuff.” And “We have to do our bit. I think it’s just that patients have to keep their wits about them.” 132  Though the degree to which they saw themselves actively managing their care varied, all the participants developed an understanding of an expanded role for themselves as health care consumers in which they took action to manage their health care experiences. An important part of their strategic activity involved deciding whether or not to act in each particular situation. This decision-making seemed to be an intricate process in which a participant assessed the specific aspects of the experience about which they had concerns within the context of their broader health care situation, what they had learned about the health care system, and how they positioned health care work within their overall lives. On the basis of their understanding of these factors, they worked out their response in that instance. In some situations the participants were more willing to tolerate the health care system and less likely to take action than in others. One of the things they took into consideration as they decided whether to tolerate a particular situation or not was the quality of the care they were receiving. Receiving the right care often out-weighed other attendant concerns that the participant may have had. For instance, one elderly woman said she did not mind having to visit multiple physicians, in multiple locations spread over a considerable geographical area, by special transit (a time-consuming form of transport), because she knew she “was seeing good doctors.” Similarly, another lady was willing to put up with an ophthalmologist who had “no bedside manner at all”, because “he’s supposed to be brilliant, and wonderful”, and she believed she was receiving the right care. In contrast, this same participant changed her optometrist, because she felt she was “not getting a proper examination”, even though “he’s world-renowned.” Also, under certain circumstances, participants were sometimes willing to tolerate  133  aspects of the health care system that they would not normally tolerate. For instance, one younger woman who usually tried to make her health care fit around her work, said, “At this point… I don’t organize it. It happens. I work around it.” From her perspective expediting her assessment as a potential living kidney transplant recipient justified tolerating the inconvenience and impact on her employment. There were also many circumstances in which the participants weighted other aspects of their lives as equally or more important than their health care, motivating them to try to manage their health care circumstances. For example, one elderly woman was determined not to allow her many health care needs to interfere with her volunteer activities. As a consequence of a change in time of day, one of these activities now clashed with her CKD clinic appointments. Rather than try to reschedule her volunteer work, this patient was planning to request a change in her CKD clinic appointment. It seemed that participants were more likely to take action to manage their health care situation when they perceived aspects of a particular situation as threatening their timely access to the right care or the continuity of their care, or were less satisfied with their care. The participants described engaging in a wide variety of strategic activities towards managing aspects of their health care situations. Being vigilant. One of the strategic activities engaged in by the participants was being vigilant. As the participants developed greater awareness of differences between health care providers and the potential for errors in the health care system, the participants became more watchful. The participants’ vigilance was evident in their anecdotes of how they monitored what was happening with regard to their health care, especially with respect to medications. One man  134  described this heightened alertness particularly well: And you have to protect yourself from these hospitals; you just have to, because they’ll kill you if you don’t. And you have to protect yourself without them knowing, not piss off the nurses, if you can. You’ve got to go over those medications. You’ve got to make them show you what they’re giving you, and … you’ve got to make sure you know what they’re giving you, and if it’s a different colored pill make them explain why it’s a different color. Similarly, another man recalled an instance during his recent five-day admission to the coronary care intensive care unit. Because his medication regimen, other than the intravenous diuretic, was unchanged, he quickly detected that it was being incorrectly administered. Notably, it was administered at the wrong times. For example, he was brought overnight sedation in the mid-afternoon and medication that he knew he should take on an empty stomach after meals. He, like other participants, worried about what might have happened if he had not been alert enough to monitor his medications. The participants compared the care they were getting with what they understood about the care for their various conditions. For instance, some participants described how they checked the medications they were prescribed against information from the internet or other resources (e.g., other physicians, pharmacists, pharmacology books, etc.). They did this to make sure that the medications did not interact with medications they were already taking or have side-effects they might be concerned about, and to confirm what the correct administration should be, and so on. Some participants went to significant effort to print off the product monograph or other information, and file these for future reference and crossreference with other drugs they were already taking. For example, one man described how he did not take a medication prescribed by his GP for pain because he was concerned about a contra-indication for the elderly, and how it was not his GP but himself who picked up that his cardiac medication may be implicated in his declining kidney function.  135  The participants also kept track of the care they received from different health care providers involved in their care across the health care system by making written or mental notes. This enabled the participants to notice immediately when they were given contradictory information or advice or when care was being duplicated. It helped them track differences between care providers and services across different parts of the health care system, and so on. As the participants detected what they identified as problems, they took further action to protect themselves and improve their access to what they deemed the right care. Where people felt the need to be vigilant, they naturally worried about times when they might not be able to keep watch over their care. As one gentleman fretted, “If you’re lying there unconscious I don’t know how you can do that.” Whenever possible the participants tried to watch over and exercise control over their care. Speaking up. Another strategic action that most of the participants described engaging in was voicing their concerns about the real or potential problems in the system that they had identified. In the words of one woman, “Now I don’t take a back seat. The minute I don’t like what’s happening, I speak up. And that seems to get me much better results in the care system.” The participants’ accounts depicted a wide-range of ways in which they responded verbally to their concerns about their health care experiences. Many participants responded by asking questions about what was happening or being suggested. At times the participants’ used their questions to provide guidance to their providers, especially if they were concerned that the provider was less experienced, knowledgeable, or competent. As one man put it, “So I have to tell him what to do, instead of  136  the other way round, you know. I say, ‘Well, are you checking…?” And someone else recalled how he questioned a nurse about his insulin dose and, unsatisfied with the answers he received, decided to treat himself until the doctor arrived: It’s scary! If you’re diabetic and you’re in the hospital, because some of them just have no concept of what insulin does…. I was on a sliding scale… and the girl came in and said, “I called the doctor. Your blood sugar is 25.” And I said, “Oh, okay. And what are you going to give me?” She says, “I’m going to give you three units.” And I said, “Well, that doesn’t sound right. What’s your scale say?” She says, “Oh well, three units for this,” and she read all the way up to 22, which was 16 units…. And the girl thought, well, when you get to the top you go down to the bottom and start up again. [laughs] You wonder, what kind of a world am I in? …. I said, “Go away, but give me my insulin from over there.” Because I take my insulin with me, you know, and I gave myself the top thing and waited until the doctor got down. Participants also learned to ask questions in an attempt to avoid unpleasant surprises. For instance, one woman recalled her shock after her kidney biopsy several years before: I assumed they’d just give me a needle … and take a piece of tissue like they normally do. They cut me open! So I was pretty friggin surprised when I woke up and saw … they’d cut me down through here [pointing to her side]. She noted, “I know now to ask questions, right!” Asking questions was also a means for participants to make sure they had the correct information, or to clarify contradictory or conflicting information. As one woman said, “So I’m always careful to ask a question twice, you know, to make sure that I’m getting the right answer.” At other times the participants voiced their opinions or concerns more directly to their health care providers. One woman described how she took control over her treatment for depression by voicing her perspective and articulating her concerns to her GP: I’m feeling better. And when he [psychiatrist] increased my medication I didn’t do it. I went to see my family doctor and I said, “I don’t think I should increase this. I’m starting to snap out of it, and I’m seeing too many side-effects. I’m doing fine at this level, so I don’t want to do it.” She agreed with me, and I didn’t do it. Another participant described taking control of what was happening during a visit to his family practice physician to have some routine prescriptions refilled: 137  I ended up with this resident, [who said] “Well, you’re in for a complete physical.” I said, “Not me! [chuckles], I get a complete physical about every four months practically.” So I said, “Nah, no one told me about that. I just came in to get a few prescriptions really.” So she looked up the chart and says, “I see what you mean now.” She read all the different things. I was tested ad infinitum. By directing the provider in this way, the patient was able to avoid having to repeat the physical examination that had been done recently by one of his specialist physicians. In this way, he reduced the time needed to obtain his prescription refills. Some participants, who were perhaps more inclined to be “contented” and “keep quiet”, learned the value of speaking up through experience. For instance, one elderly woman discovered that if she voiced her concerns she was more able to access help that she would be otherwise have been unaware of. When her nephrologist asked why she had missed two appointments and she told him about her transit difficulties “[they] made it good for me. They’re giving me taxi fare both ways…. I wouldn’t be going otherwise.” Thus these participants discovered that advocating for themselves in relation to their health care by asking questions and voicing their opinion and concerns was a valuable tactic in managing their health care experiences. By asking questions and voicing their concerns the participants were able to reduce duplication of services, decrease inconvenience and reduce some of the risk to themselves as patients. Using relationships. In addition to their vigilance and self-advocacy, the participants described strategically using interpersonal interactions in managing the system to achieve health care goals, particularly as these pertained to avoiding/preventing negative outcomes or pursuing the right care. Participants talked about the importance of their relationships with other people (including friends, family members, and social and health-related acquaintances) who could assist them to manage their experiences within the health care system. Their accounts 138  portrayed capitalizing on interpersonal interactions for two reasons – because they valued the relationship and to achieve their health care goals. Participants described how having the right attitude towards their health care situation and providers could be an important tool in achieving their health care ends. Some participants identified that having a negative attitude was counter-productive to obtaining care. For example, one woman said, “If you’re sitting there and looking at everything in a negative way, you wouldn’t get the help you really need.” Believing that “It’s the way you treat people that makes the difference” many of the participants described how they worked on their interpersonal relationships with health care providers to improve their health care experiences. For instance, one man noted, “I hear people talk about grumpy nurses, and I say, ‘How do you treat the nurse?’” Another participant described his approach as being: …the way you surround yourself, and the way you’re connected with the people you deal with. If you can get it to almost a personal level you’re going to be well cared for. And if people say, “Well, he’s not trying to abuse us, he just genuinely needs help,” it shows, you know, in the way they’re willing to come out and do things. By approaching their relationships with health care providers strategically, the participants felt they were able to achieve health care ends. Participants recognized the value of assistance that worked for them. As one woman put it, “I don’t have great faith in the health system. I have faith in my own network.” Identifying and building relationships that provided a sense of security that they would receive the right care within the unsafe environment they found they had to negotiate was important to the participants. For some participants this feeling of security rested on a specific physician who coordinated and facilitated their care. Though many participants described their GP in this role, for some it was a specialist such as a nephrologist or cardiologist.  139  For other participants, securing the right care required “a good network” consisting of a coordinating care provider, specialist physicians and other providers they trusted, and acute care hospitals the participants felt they could rely on. For example, two participants described their confidence in their CKD clinics: P1: Because being in the clinic, I have a nurse who I can call if I have questions, I have a pharmacist who I can call if I get medication I have doubts about, I have a social worker which I haven’t really had reason to use yet, and, so I have good care there. P2: And that’s what I really notice … how they seem to work well together, and because they work well together there’s a lot of people looking after you. And so that really makes a difference. They discovered that, although the actual disciplines might vary, a multi-disciplinary health care team offered emotional and social support, as well as information and assistance with managing medications, diet, and other aspects of the recommended medical regimen. The participants’ accounts depicted the trouble they went to in seeking out and protecting care that worked for them. Participants who were satisfied with their care arrangements often described going to great lengths to maintain these. Two participants described driving over 50 kilometers to see their GP. Others told me that the location of their health care provider(s) was a consideration in determining where they lived. For example, one participant said, “So I said to my husband, when we sell this house, we can’t move out of the area. We have to stay in the area so I can keep the same doctor.” Participants who had experienced good helping relationships in the past sought them out again. This sometimes took significant perseverance as one man’s story of trying to replace his GP depicts well. So he quit, and his partner was supposed to take us on, and he changed his mind.… I was stuck without a doctor with him leaving in a week…. It was a real disaster…. So finally I went to the [provincial health care provider regulatory body], and called a couple of doctors, but they wouldn’t take me…. It says they’re taking new patients 140  but they wouldn’t take me….three doctors before I finally found a doctor. This man persevered because: I’m very strong on the point that your GP’s got to be your main person. He’s got to be your arms and your legs. In other words, everything should go through your GP. “I would like it if you sent the reports back to my GP to let him know what’s happening with me.” …. I’m like that. I want the GP to be my control room.… I need him – he can handle all these doctors. Believe it or not, your GP’s your most important part of the puzzle. He’s the glue that joins everything together, that holds everything together. If you don’t have a good GP you can’t get to these doctors. You have nothing. It’s that simple. Participants also seized opportunities to change health care providers, with whom they had unsatisfactory relationships, when these presented. For instance, one woman described how: I had a cardiologist here … and I did not like his way – his manner – and I just thought, “Why should I have to put up with that?” and then sometimes people feel you have to be satisfied with that because you have no choice. But …. he [GP] sent me for an angiogram and I liked the doctor who did it, and I asked him, “Are you taking patients?” and he said, “Yes.” So I switched. And another woman recalled taking advantage of an opportunity to find a new GP: I was still floundering with doctors, and I thought, “Well, he’s [specialist] such a nice doctor. Surely he knows somebody else as nice as him.” And so I asked him, and I said, “You know what I’m like.… Now will he understand what I’m like?” and he said, “Oh, yes!” and sure enough he does. Another man took advantage of his endocrinologist taking an extended leave to ask his GP to refer him to an alternative endocrinologist within the hospital where all his other health care providers were located. In addition to optimizing their interpersonal connections with health care providers, many participants described how they made use of people, or what some termed their “connections”, to assist them or others to access care. These patients drew upon these individual’s knowledge of the health care system and/or their ability to manipulate what would “normally” happen. These connections were often health care providers or associated  141  with the health care system in some way. In some cases they were also friends or family members, because the patient’s social network was “loaded with nurses” or he/she was “from a whole family of doctors”. In other cases, the participants drew upon people that they were more or less well acquainted with. Recognizing disparities between the people and relationships they could draw upon, when they had options, the participants were quite selective about whom they contacted for assistance. For example, one man described using his nephrologist to refer him to the urologist because “they [take] me in right away when he refers. When the GP refers it takes a lot longer, there’s not so much of a rush.” Some participants described how they used their connections to improve their wait time for services arranged by one of their health care providers. They told striking stories about their experiences as this example illustrates: At one point my diabetes caused me some eye disease and they were going to take my driver’s license away. And I panicked. I went crazy, because they told me I couldn’t get the surgery for a year and a half. And I have a friend who is a podiatrist. And I phoned him and I said, “What am I going to do?” Well, I had an appointment within a week. He phoned a friend and all of a sudden I had an appointment within a week. He was wonderful, and got me the surgery. Similarly, another participant recalled how, when he was told that he may wait six months for an angiogram appointment at one hospital, he contacted a physician acquaintance at another hospital and “in three days I had my angiogram, and we weren’t planning any operation, but I needed a bypass.” He went on to say, “And if I didn’t pull a string to get my angiogram here, I’d be dead by now. I’d have had a massive coronary. I probably wouldn’t be here now if I didn’t pull strings.” Many participants also used their relationships with other people to find and access new health care providers for themselves or their family members. One man said, “So I got  142  [nephrologist] – he was able to push things for me. So I got another doctor.” Most of the participants believed that these connections made the difference in gaining access to a provider. One participant recalled, “She [GP] took [wife’s name] because she’s a relation to a current customer. That’s how it worked. She’s not taking any new ones per se.” Another woman said, “So the next thing I know, I’m in [hospital A] seeing [nephrologist] in no time flat because of her [family member]…. So like I told you, it’s who you know that certainly gets you ahead of the line.” The notion that “it’s not what you know, it’s who you know” was a common refrain in the participants’ accounts. One man remarked, “And this is the whole problem with the system. You need connections to get through. It shouldn’t have to be, but that’s the way it is.” Some participants were ambivalent about the need they had identified for patients to use connections to access health care services more expediently, and what they perceived as their privileged ability to do so. For example, one man said: I find it really tough when I look and see those who are standing in line, and they deserve the same service that everybody else gets, but they can’t, because I have connections. And it shouldn’t be that way, but I’m happy that I have them. For patients, like this man, realizing that connections made a difference to their health care created an unsettling sense of vulnerability within a health care system where they perceived they needed good connections to get the right care. Through experimentation, the participants learned that their intentional efforts to make the most of their interpersonal relationships with their health care providers offered tangible benefits. These patients also discovered to their surprise that connections matter and that exploiting these connections may protect them from difficulties or harm related to structural problems within the health care system. The participants’ accounts of their vigilance, self-advocacy, and capitalizing on 143  relationships demonstrate how they learned not to trust in the health care system and work around it. The participants’ accounts portrayed the value these patients placed on having the right people in place within the health care system to provide them with assistance, or in other words, a safety net they could rely on. To that end they were willing to go to considerable lengths to seek out and protect arrangements that gave them this security. Being tactical. Over and above discovering that they needed to be vigilant, speak up, and find and keep people who could help them, the participants also figured out for themselves, learned from others, and experimented with a variety of other ways to manage the health care system. In doing so the participants displayed how they used their knowledge about their health care context to improve, or work around, the way in which the health care system usually functioned towards enhancing their experience(s). Many participants figured out that they needed to take control of organizing their appointments with their physicians or other providers to better coordinate their appointments and blood work tests. They learned by trial and error which health care providers were more flexible about changing their follow-up schedule. For instance, one man said that he would ask his endocrinologist to “to switch to 6 [from “every 4 months”]. He doesn’t know it yet, but I’ll see him this week” to fit with his nephrologist’s appointment that was now every 6 months. Moreover, participants used their knowledge of the way certain health care sites worked to be strategic about booking appointments for times when their providers were less busy or more likely to see them promptly. For example, one woman said, “And you have to know how they operate … You book an appointment for the first in the morning, or the first  144  in the afternoon”. Another man commented that he had learned that his local laboratory was open on weekday evenings. By going after dinner, he had also discovered that the laboratory was less busy in the evening and he found parking more easily. Participants also developed fall-back plans for when their attempted manipulation of appointment times failed; for instance, two women described how they always “take a book” in case they have to wait despite their efforts. The participants also described their tactics for circumventing the obstacle sometimes presented by support staff, such as receptionists or secretaries, to obtaining an appointment or speaking with the physician. Aside from using their connections to obtain a first appointment with a physician not taking new patients, participants also used their knowledge of multidisciplinary teams to their advantage. For instance, one woman described using the nurse practitioner as first contact and then called on the authority of this provider when making an appointment to see the physician. Although most of the participants seemed to have mastered the art of polite manipulation, some participants recounted instances when they were more forcefully assertive. For example, one man described how he had questioned the legitimacy of the secretary asking him for health-related information so that she could decide how urgent or otherwise his request for an appointment was; he said, “And I told her the other day, she’s not a doctor, and it’s not her business.” Many participants described strategically working around the fact that physician’s offices were often very busy, and it could be difficult to obtain appointments. Some participants intentionally booked their routine appointments well in advance. This made it more likely that they would be able to book an appointment for the time and day they preferred, and facilitate the smooth flow of other care dependent on an appointment. For  145  example, participants described making an appointment with the primary health care team a week in advance of prescription medication running out, or scheduling the next routine appointment before leaving the provider’s office. The participants also discovered that they could take advantage of certain loopholes in the system, particularly with regard to scheduling investigations, if they were willing to be flexible and make themselves available. For example, one participant described how, when informed about a three month wait for a computerized tomography (CT) scan appointment, she told the receptionist of the radiology department that she was available on short notice if there was an earlier appointment due to a cancellation; she had her CT scan within a week. Another participant remarked that she always expressed willingness to have an investigation or test done at an alternative location; this tactic sometimes gained her access to earlier booking dates. Other participants believed in volunteering for research studies, as they had discovered this gave patients access to care that may not be available otherwise (e.g., colonoscopy, new medications still in trial, etc.). Some participants said they expressed their willingness to be seen by someone other than their usual care provider, for example, the nurse practitioner or resident instead of the family physician. In their experience, by doing so they were then less likely to wait to be attended to. Some participants paid their GP an additional annual fee to obtain telephone access to the GP, enable their pharmacist to call in for prescription refills, and so on. They perceived being in a position to do this, by virtue of having a GP who offered this service and having the ability to afford to pay for it, as giving them an advantage not available to other patients with similar health care needs. The participants also described the various ways in which they had figured out how to  146  coordinate requisitions for blood work to reduce duplication and/or the number of venipunctures, and to ensure that all appropriate personnel received the test results. Some participants eliminated duplicate testing and multiple venipunctures by taking multiple requisitions from multiple physicians to one laboratory simultaneously and requesting the laboratory to copy the test results to all the physicians. Still other participants described collating their tests onto one form, and ensuring all their physicians received copies of the results by ensuring their physicians’ names were on the form. Some participants coordinated their physician visits so that they could take the form from the first physician to all the others and have each one enter all requested tests on this single form. In this manner, the patient could then coordinate the interval between blood tests with the physicians to minimize the number of times they were tested. Several participants maintained their own health care summaries; some of these summaries were typed and printed, some hand-written. All were up-to-date and provided information about the individual’s medications (rationale, dose, etc.) and physicians (including frequency of visits, location, etc.). Aside from being a device individuals used to track their care, these participants used these summaries for additional reasons. For example, one man explained: “I walk around with a list of all the medications that I take, in case something happens to me, I don’t have to memorize them.” Another man used his list to provide emergency or new care providers with an up-to-date synopsis of his complex medical history, medications, and multiple providers: I almost always take that list with me…. It usually raises an eyebrow or so when they see it, and that’s why I carry it. Because what I’ve seen is, if you’re sitting there fairly drowsy, they realize that there’s a lot more going on with this guy sitting here in front of me than perhaps meets the eye. That’s my experience anyway. The participants in this study described how in these many “small” ways they were  147  able to choose to influence their health care experiences. And, just as this group of patients dealing with multi-morbidity described how molehills could become mountains in the context of a health care system not set up to effectively address their particular needs, so too they depicted how many small and ultimately important strategies and tactics could add up to have a significant impact on the overall quality of their lives with multi-morbidities. Conclusion The accounts contributed by the participants in this study opened a window into how patients living with multi-morbidity experience navigating the health care system. From the perspective of this group of patients, this was a complex undertaking requiring ongoing discovery of what they needed to learn about the health care system and what they could do to manage the health care system in order to accommodate the work related to their health care needs within their lives and to avoid falling through the cracks in a health care system not designed to meet their particular needs. It was clear that, from the perspective of these patients, they had little power to affect many of the challenges in the health care context they encountered as a consequence of living with multi-morbidity. As one participant in this study said of navigating the health care system, “You do what you can”. This unpretentious statement encapsulates the pragmatic perspective of the participants on navigating the health care system as managing the aspects of their experiences with the health care system that were within their power to influence. However, this was clearly not as simple an undertaking as it may sound. Rather, the participants’ accounts showed how they developed an understanding of the health care system through experiential observations, analysis of what they observed, and developing theories about how the health care system worked. The participants were then  148  able to use those theories to orchestrate their care by developing specific approaches and tactics and optimize their experiences within the health care system. The participants’ accounts depicted their responses to their health care situations as a sophisticated, strategic activity in which they made conscious decisions, within the context of their lives as a whole, about what, if anything, they would do with regard to certain aspects of their interactions with their health care context to manage the system so as to increase the likelihood of meeting their needs.  149  Figure 4.1 Discovering What You Must Learn  150  Figure 4.2 Discovering How to Manage  151  CHAPTER FIVE: DISCUSSION OF THE FINDINGS Introduction Delivering efficient and effective health care to the growing numbers of people living with chronic conditions, and increasingly these are people with multi-morbidity, is one of the major problems confronting modern health care delivery. There is huge potential for error when making changes to the health care system to address the issues associated with care delivery for this particularly vulnerable group of patients16. Accordingly, there is a widespread sense that the health care consumer perspective ought to be part of the discussion about what should happen; however, including this consumer perspective within that larger dialogue is not straight-forward. Qualitative research is one mechanism through which the collective perspective of a particular group of health care consumers, such as people dealing with multi-morbidity, can be expressed. The findings from this study bring an important health care consumer voice to the current health care discourse. In the preceding chapter I reported these findings in two parts. In the first section of the chapter I described how this group of patients perceived their health care context. In the second section of the chapter I described the perception of this group of patients with multi-morbidity on navigating the health care context they encountered. Many of the contextual findings correspond closely to what may have been predicted from the existing body of literature. The correspondence of these contextual findings to the literature is especially evident with regard to issues related to discontinuity of care (Loeb et  16  When referring to my research I use the terms patient and consumer as defined in Chapter 1. When referring to the work of other authors I use the terms appearing in the original publications, that is, either the term patient or consumer because the terms are used interchangeably within the literature, to refer to those who require assistance or support from the health care system by virtue of a chronic condition. The term patient can therefore refer not only to the individual who has the illness but also to the family caregiver charged with coordinating health care support on the patient’s behalf.  152  al., 2003; Noel et al., 2005; Ravenscroft, 1999, 2005; Thorne, 1993; Williams, 2004), inadequate support for self-management (Bayliss et al., 2003; Lorig & Holman, 2003; Noel et al., 2005; Williams, 2004), and frustrating logistical issues (Blendon et al., 2003; Preston et al., 1999; Rasmussen et al., 2001). The contextual findings also support suppositions by other researchers about the possible magnifying effect of multiple chronic conditions (Bayliss et al., 2003; Noel et al., 2005; Thorne, 1993; Williams, 2004), and the importance of taking the context in which patients seek and receive care into consideration when examining the health care related work required of patients (R. Anderson & Bury, 1988; Corbin & Strauss, 1988; Gregory et al., 1998; Montemuro et al., 1994; Polaschek, 2003; Price, 1989; Thorne, 1993). In addition to these important contextual findings, there were other study findings related to what patients do with regard to navigating their health care context. These findings suggest new ways of looking at the health care system, how it works, and what this means for patients dealing with multiple chronic conditions. The health care consumer voice captured in these findings provides a distinct and valuable alternative perspective on the issues being discussed in regards to health care delivery. In particular, these findings add new information about what patients do in managing their health care and what knowledge they require to do this successfully. In the following discussion I consider these findings in relation to the current discourses about (a) patient role definition, (b) patient health care-related work, and (c) Canadian health care renewal. Revisiting the Patient Role The question of how to define the patient role enters into discussions around selfmanagement, patient safety, continuity of care, and consumer engagement. Perhaps the most  153  clearly understood of these patient roles, and the one on which there seems to be greatest agreement, is consumers’ day-to-day involvement in managing their chronic conditions (selfmanagement). However, this discussion of different aspects of the health care discourse, in which the question of how to define patient role arises, will show that self-management is clearly not the only expectation of patients with chronic conditions. Self-Management As previously noted, there is a substantial body of literature about the role of patients in self-managing their chronic conditions (e.g., King et al., 2002; Klang, Björvell, & Cronqvist, 1996; Robinson, 1993; Sidell, 1997; etc.). The self-management discourse tends to focus on how patients with a chronic condition may be supported to learn and integrate aspects of daily disease self-management into their lives and cope with and adjust to having a chronic condition. Barlow, Wright, Sheasby, Turner, and Hainsworth’s (2002) decision to define self-management as “the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and life style changes inherent in living with a chronic condition” (p. 179) for their review of self-management approaches reflects this focus. The findings from this current study draw attention to the challenges faced by patients with multi-morbidity in dealing with the health care system and the many demands of managing their health care. These findings support the use of definitions like Barlow et al’s, and other authors’ research findings about the impact of chronic conditions on individuals and the significant adjustment required of and support needed by patients with chronic conditions. The self-management literature centres around identifying and describing what knowledge is required for self-management, and figuring out how patients might best be  154  supported (including social, behavioral, and emotional support) to acquire, retain, and use this knowledge and practice self-mangement (Barlow et al., 2002; Coulter & Ellins, 2007; Curtin, Mapes, Schatell, & Burrows-Hudson, 2005; Curtin, Sitter, Schatell, & Chewning, 2004; Lorig & Holman, 2003). Redman (2005) clearly argues the importance of adequate patient preparation for self-management if patients with chronic conditions are expected to do take this on. In general the rationale for self-management appears to be that effective selfmanagement will result in optimal management of illness, prevent complications, and ultimately reduce potential future health care costs. Creer and Holroyd (2006) draw attention to the importance of moving away from traditional autocratic decision-making models and health care relationships in which patients are expected to adhere to the “experts” advice towards recognizing the important role of patients in managing their chronic conditions. They suggest that effective self-management depends on patient-centred care in which providers form health care partnerships with patients based on information-sharing and shared decision-making. Although disease selfmanagement was not the focus of the current research many of the health care consumers who participated in this research clearly indicated that they were actively participating in their day-to-day care. The degree to which these consumers were able to function as full partners in their care seemed to differ depending on their relationships with their individual providers, and the providers’ comfort with such partnerships. This group of patients also described seeking out health care providers with whom they could communicate, participate in decision-making, and partner in their care. Two important assumptions underlying the notion of patient-centred care are that patients will (a) actively participate in and (b) be full partners in the health care process  155  (Epping-Jordan et al., 2004; Thorne, Nyhlin, & Paterson, 2000). There is a growing body of literature about opportunities to alter and improve patient-provider communication (Haidet, Kroll, & Sharf, 2006; Thorne, Harris, Mahoney, Con, & McGuinness, 2004b; Thorne et al., 2000), and strategies to increase patient engagement in care (Bergeson & Dean, 2007; Coulter & Ellins, 2007; May, 2006) and decision-making (Orsino, Cameron, Seidl, Mendelssohn, & Stewart, 2003; Towle & Godolphin, 1999; Woolf et al., 2005). For example, in their recent review of the literature for patient-focused quality intervention evidence, Coulter and Ellins highlight strategies aimed at (a) improving patient health literacy, clinical decision-making, and self care; and (b) involving patients in improving the safety of their care by, for example, making informed choices about providers, helping to reach an accurate diagnosis, contributing to safe use of medications, participating in infection control initiatives, checking the accuracy of medical records, observing and checking care processes, identifying and reporting treatment complications and adverse events, and practising effective self-management and treatment monitoring. (p. 26) The current findings suggesting that for the group of patients who participated in the study participating in their care was the result of their active efforts and not generally a result of systems that supported patient-centred care lend support to the pursuit of strategies to support patient-centred care. Patient Safety Patient safety, commonly understood as preventing health care-related errors, has become a hot-topic in discussions about health care delivery improvement. The publication of To Err Is Human: Building a Safer Health Care System (Kohn, Corrigan, Donaldson, &  156  Institute of Medicine (U.S.). Committee on Quality of Health Care in America., 2000) drew wide-spread attention, both inside and outside of the USA, to the problem of medical errors. Closer to home, in their ground-breaking Canadian study Baker et al. (2004) estimated that 7.5% of patients in Canadian hospitals experienced one or more adverse events, and that in almost 37% of these cases, the adverse events were judged to be highly preventable adverse events. The current study findings indicate how many of the participants were aware of the potential for such adverse events. Even in this small sample, several participants had personal experience of adverse events. One of the health care improvement suggestions in the Kohn et al. (2000) report was to involve patients in monitoring the safety of their care. The idea that patients can and should be involved in monitoring and improving the quality and safety of their health care appears to have gained wide-spread purchase. In their recent editorial Empowering Patients to Improve Safety (2006), Alvarez and Sciamanna suggest that patients are an untapped resource to improve patient safety through active involvement in their care. They draw attention to patient-focused safety initiatives in the USA, for instance, the SPEAK UPTM campaign by the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) and the Centers for Medicare and Medicaid Services urging “patients to take a role in preventing health care errors by becoming active, involved and informed participants on the health care team” (The Joint Commission, n.d.). In some of the initiatives undertaken during this campaign patients have been encouraged to help prevent mistakes during surgery and medical tests. Alvarez and Sciamanna also note the success of patient involvement in monitoring hand hygiene compliance in health care organizations; they cite the positive evaluation of the Partners in Your Care initiative by McGuckin, Taylor, Martin, Porten, and  157  Salcido (2004) as one example. Organizations like the Canadian Patient Safety Institute, the Ontario Hospital Association’s Patient Safety Support Service, and initiatives like the Safer Healthcare Now! Campaign, are manifestations of the high-profile of patient safety in Ontario and Canada. Like the campaigns in the USA, these organizations and campaigns also seek to expand the patient role in improving their safety in the health care environment. Viewed in the context of the current findings it seems that patients with multimorbidity may already be engaging in many of the activities described above in an effort to improve or ensure the safety of their health care. For instance, the study findings indicate how many of the participants were concerned about the safety of their care, monitored the care they received, tried to make informed decisions about health care providers, and so on. However, it seems that these behaviors were more often patient-initiated than mediated or encouraged by health care providers suggesting that these participants were perhaps motivated by their negative experiences or public attention to issues of patient safety. Continuity of Care The discussions on self-management and patient safety are complemented by discussion about continuity of care; and, as in other areas of the health care discourse, here too there are questions as to what role patients should play. Better continuity of care has been linked with improved patient outcomes and there is growing discussion about how to achieve continuity of patient care, especially in primary health care delivery. Like the discourse about self-management the dialogue about continuity of care can be traced back several decades with recent reviews of the continuity of care literature highlighting conceptual and methodological issues (Reid, Haggerty, & McKendry, 2002; Sparbel & Anderson, 2000a, 2000b), definitions of continuity of care (Haggerty et al., 2003), and quality care outcomes  158  (Cabana & Jee, 2004; van Servellen, Fongwa, & Mockus D'Errico, 2006; Williams, Dunning, & Manias, 2007; Worrall & Knight, 2006). In their multidisciplinary review of continuity of care, Haggerty et al. (2003) identify and define three types of continuity: Informational continuity – The use of information on past events and personal circumstances to make current care appropriate for each individual Management continuity – A consistent and coherent approach to the management of a health condition that is responsive to a patient’s changing needs Relational continuity – An ongoing therapeutic relationship between a patient and one or more providers (p. 1220) Haggerty et al. go on to identify two key elements for measuring continuity of care: (a) the focus of care on an individual patient, and (b) care over time. These authors suggest that the challenge of evaluating continuity of care lies in measuring the patient or provider experience of care as connected and coherent. Such measurement is necessarily less straightforward than evaluating the actual health care processes implemented to improve continuity of care. Indeed, Reid et al. (2002) note that multiple measures are required with some more relevant in certain contexts than others, and that new measures are needed to assess continuity of care by teams and to measure continuity of care from the patient’s perspective. The importance of continuity of care to patient outcomes, though these are difficult to measure, is widely recognized (Cabana & Jee, 2004; van Servellen et al., 2006; Williams et al., 2007; Worrall & Knight, 2006). There is mounting evidence in the literature that relational continuity is particularly important to patients even in a universal health care system (Menec, Sirski, & Attawar, 2005). The findings from the current study add to the  159  body of evidence supporting the importance of an ongoing relationship between a patient and one or more health care providers (Freeman & Richards, 1993; Worrall & Knight, 2006). However, these current findings also indicated that these patients with multi-morbidity valued informational and management continuity highly. These findings suggest that for these patients with multi-morbidity relational continuity was valued primarily as a means to improve the informational and management continuity of their condition(s). The intent with this research was not to explore the relative value placed by patients on different types of continuity of care. However, it seems that these participants valued relational continuity more for the potential for relational continuity to improve the informational and management continuity of their care, than for the relationship per se. Furthermore, the findings from the current study, especially the contextual findings, provide support for using the types of continuity identified by Haggerty et al. (2003) as valuable ways of thinking about the different aspects of continuity of care. For example, these current findings draw attention to informational continuity issues related to incomplete, incorrect, or inaccurate health care records, and information retrieval problems; management continuity issues like conflicting or contradictory care and/or patient education for selfmanagement; and relational continuity issues related to difficulties finding primary health care providers, or providers who provide comprehensive, quality care, and patient-provider communication problems. The participants’ accounts also highlighted the strategic role assumed by many of these patients with multi-morbidity in trying to ensure the informational, management, and relational continuity of care of their care more clearly than is identified in other study findings.  160  Consumer Engagement Another sign of the uptake and application of the notion that patients should be involved in the broader health care process is publications aimed at informing and supporting health care consumers to be more involved in their health care. Recent examples are Your Health Care: Be Involved (Ontario Hospital Association Patient Safety and Support Service, 2006) and Navigating Canada’s Health Care: A User Guide to Getting the Care You Need (Decter & Grosso, 2006) Certainly, the findings of the current study clearly indicate that patients with multi-morbidity have needs for broader health care system knowledge than is usually referred to in the discourse about patient education needs. Self-help publications may go part of the way towards solving some of the problems faced by patients with multimorbidity by offering health care consumers an opportunity to acquire the system-related information they need more efficiently than through the process of trial and error described by the study participants. However, Arnold (2007) notes that better information resources for consumers and campaigns targeted at engaging consumers may not be sufficient if the structure and culture of the health care system does not promote consumer engagement. In addition, the health care workforce may not be prepared for changes in the self-management role of patients, as Astin and Closs (2007) note with reference to nursing. The descriptions given by the participants in the current study of how the existing health care structures and culture in Ontario hindered their active engagement in their health care seem to provide support for these authors’ perspectives. The current study highlights a number of potentially problematic issues as regards promoting consumer engagement in the existing health care environment. One, the findings from the current study illustrate the potential for conflict when an engaged  161  consumer encounters a health care culture that may espouse consumer engagement and patient-centred care, but only under limited conditions. For example, questions or concerns about self-management may be acceptable, whereas questioning the competency, knowledge, or actions of a provider may not. Two, the current thinking about consumer engagement runs counter to the long-standing dominant health care culture in which patients were encouraged not to ask questions, health care institutions were safe-havens, and health care providers were considered to be the “experts”. The current study findings, particularly as regards “being vigilant” and “speaking up” illustrate these patients’ awareness of what questions may be acceptable and their caution in raising issues that may bring the competency, knowledge or actions of a provider into question. The current study findings illustrate how difficult it may be for patients to alter their perceptions of their health care environment and expectations of their health care providers, and how this may engender a lack of confidence in the system. These findings suggest prudence in how we approach promoting consumer engagement. There appears to be a growing agreement across the health care discourse that the patient role in health care should be expanded. This idea seems to rest on the assumption that it is reasonable to assist health care consumers to accommodate the existing health care system. This assumption likely rests on another assumption, namely that it is difficult, perhaps even impossible, to make the necessary accommodations in the health care system to better meet the needs of the health care consumer. Given the current findings it would seem prudent to revisit the notion of expanding the health care consumer role, the underlying assumptions for this idea, and the potential impact on patients whom these current findings suggest are already burdened by health care-related work.  162  Reconsidering Patient Work Although the discourse on the concept of consumer engagement is relatively new, the notion of patient work is less so. It is widely recognized that dealing with a chronic condition requires work on the part of the patient. There is an enormous body of literature exploring the notion of patient work from various perspectives. Over the last 20 years many authors have identified that patients with chronic conditions are often actively involved in their health care, both as regards day-to-day self-care and access to health care services and continuity of care (e.g., Ravenscroft, 1999; Strauss & Corbin, 1988; Thorne, 1993; van Servellen et al., 2006; Williams, 2004; Williams & Botti, 2002). The current findings, portraying the extensive strategic work done by the consumers who participated in this recent research, support the conclusions of such authors. It is notable that, despite the growing prevalence of multi-morbidity, the primary focus of this literature tends to be single, rather than multiple, conditions. The current study findings raise the possibility that this single disease focus may be problematic for patients with multi-morbidity. For instance, these findings suggest that the tendency within the health care system to focus exclusively on single chronic conditions may actually complicate disease self-management for patients with multi-morbidity by introducing the potential for contradictory or conflicting information. Moreover, these new findings prompt reflection on how health care delivery focused on single conditions may limit health care provider insight into patient issues associated with multi-morbidity. For example, health care providers may not appreciate the cumulative workload for patients who have to deal with the many “smallpicture” demands associated with managing multiple chronic conditions. In addition, the health care consumer perspective garnered in this study provides a  163  window into how the health care-related work of patients occurs in the context of the extant health care delivery system – a system that was not designed for the purpose of care delivery for patients with multiple chronic conditions. The findings highlight how, in the context of multi-morbidity, the tasks that others, such as health care providers or policy-makers, may regard as minor (e.g., managing appointments or having bloodwork done) may become major challenges to patients. I note that health care delivery for the index conditions chosen for this research tends to be more sophisticated and organized by comparison to that for many other chronic conditions. Thus, the magnitude of the patient work manifested in these findings likely under-reflects the work done by patients with multi-morbidity. Moreover, the current findings illustrate how a focus on discrete diseases may lead to a care delivery system that does not take into account the accumulated expertise, concerns, and work of patients with multi-morbidity. This was especially evident in the participants’ accounts of issues related to medication prescription and administration. Regrettably these current findings echo a similar discussion by Strauss & Corbin in Shaping a New Health Care System (1988) in which they lament the lack of recognition of the visible and invisible work done by patients with chronic conditions do both within hospitals and at home, such as, keeping one’s body absolutely still during a procedure, negotiating for pain relief, and monitoring the staff’s work for competence and safety. Much of how the patient carries out the work is based on knowledge gained from years of managing his or her illness. (p. 153) The findings from the current study, like those of other investigators in the field of chronic illness (e.g., Corbin & Strauss, 1988; Strauss & Corbin, 1988; Thorne, 1993), clearly illustrate how much work accommodating the extant health care system requires of patients.  164  These findings also make apparent how the work done by patients to bridge gaps and overcome obstacles they encounter can potentially obscure health care system-related problems. Viewed in the light of these current findings, the shift in the health care discourse towards promoting expectations of extensive patient involvement in and partnership in health care is potentially problematic. It is indisputable that publications like Your Health Care: Be Involved (Ontario Hospital Association Patient Safety and Support Service, 2006) and Navigating Canada’s Health Care: A User Guide to Getting the Care You Need (Decter & Grosso, 2006) will hold value for patients trying to deal with the extant health care system. However, in the light of the current findings, these and similar publications can also be viewed as potentially enabling the perpetuation of the health care system status quo by promoting patient accommodation to it. Re-examining Health Care Renewal It seems that, despite growing recognition of the broader scope of the work that patients with chronic conditions do in managing their health care, the discourse about health care renewal does not seem to reflect an appreciation of the needs of patients with chronic conditions and particularly those with multi-morbidity. The current study findings prompt a reflection on the public and scholarly discourse about what Canadian health care consumers value about and want from the Canadian health care system, nationally and provincially, and some of the current proposals and planning for health care renewal. Core Values During the past decade a number of attempts have been made at a provincial (Commission d'étude sur les services de santé et les services sociaux, 2000; Commission on Medicare, 2001; Ontario Health Services Restructuring Commission, 2000; Premier's  165  Advisory Council on Health, 2001) and federal (National Forum on Health, 1997; Romanow, 2002; Standing Senate Committee on Social Affairs, Science, and Technology, 2002) level to gauge Canadian public opinion about the health care system and recommend steps towards health care renewal. The ensuing reports (e.g., the Romanow and Kirby reports) reflect the support of the general public for the underlying values of the Canada Health Act, and the importance attached to maintaining a Canadian health care system intended and structured to provide universal, publicly-funded, equitable access to health care. For instance, Canadians’ commitment to underlying values of equity and fairness for health care delivery17 were reaffirmed by Romanow (2002). In light of these reports, it is troubling that the participants in the current study experienced the present health care delivery system as departing from the core values of equity and fairness underlying the Canada Health Act. Based on both their positive and negative experiences, the participants in the current study suggested that there are two parallel systems in play. One, a “basic” system in which patients may or may not have timely and appropriate access to health care providers, investigations, and so on and good continuity 17  The Commission’s consultations with Canadians determined the values and expectations underlying the health care system as including: Universality – Everyone should be included and have access to the benefits of Canada’s health care system on the same terms and conditions. Equity – Access to health services should be based on need and need alone, not on other factors such as wealth, origin, the region where people live, their gender or age. Solidarity – As Canadians, we have a collective responsibility to provide essential health care services to all Canadians, not for only this generation of Canadians but for those who worked to build the system in the past and for generations of Canadians to come. Responsiveness – Canadians want and expect both quality of care and timely access to care to be essential hallmarks of the health system. Wellness and responsibility – Canadians understand that they have a personal responsibility for staying healthy and they want their health care system to put more emphasis on preventing illness and injury. Efficiency and value for money – People see increasing costs and, as taxpayers and owners of the health system, they expect efficiency and the best value for every dollar spent on health care. Accountability and transparency – People are no longer prepared to simply sit on the sidelines and entrust the health system to governments and providers. They want to be involved, engaged and acknowledged, and well informed as owners, funders, and essential participants in the health care system. (Romanow, 2002, pp. 48-49)  166  of care. The other seems a “privileged” system in which patients who have the necessary knowledge and understanding of the system and know the “right” people, or are able and willing to advocate for themselves (i.e., are “squeaky wheels” or “speak up”) are able to strategically improve their access to and continuity of care. As a consequence of their experiences the study participants speculated about the functional inequity of the present health care delivery system. The findings of the current study support the findings of a recently published study by Friedman, Schofield, and Tirkos (2007). These authors surveyed a random sample of 668 Toronto residents, of whom 15% responded (the respondents were disproportionately female, university educated, and employed in the health care sector). They found that 95% of respondents supported “equal access based on need” (p. 261) and 77% “agreed that allowing greater access for payment creates unfair disparities” (p. 261). Nonetheless, approximately half the respondents said they would consider queue-jumping to improve their access to care and 16% had previously called “a friend who is a doctor, works for a doctor, or is a hospital administrator” (p. 261) to improve a waiting-list position. Although both the current study and that by Friedman et al. are limited by small numbers of participants and possible selection bias, both studies highlight how an individual’s behavior may diverge from their beliefs in the matter of preferential access to health care. In the general public domain, though there is some recognition given to the notion that some Canadians may be privileged over others as regards health care, the discussion tends to focus on debates around “private” vs. “public” or specific populations (e.g., the homeless, new immigrants, or First Nations peoples on reserves) as opposed to the idea that there may be more pervasive and subtle inequities within the publicly-funded system. The  167  current research explored the subjective realities of a specific group of health care consumers. The findings demonstrate that from the perspective of these health care consumers the health care system is not equitable. The findings indicate that some patients are able to use their privilege, not merely for convenience, but to assist them in dealing with the compounded work and challenges of living with multi-morbidity. It is this certain experiential perception that health care inequities exist, not the evidentiary proof of these inequities, which creates the discomfort for health care consumers. Likewise, because the system is publicly portrayed as entirely equitable, health care consumers’ experiences of subtle inequities has a significant impact on how they relate to the system, even if they are among the more fortunate. Targeting Management of Chronic Conditions The consumer perspective captured in this research supports the continued development, implementation, and evaluation of innovative approaches that increase overall continuity of care (relational, informational, and management) for patients with multimorbidity. Many of the current health care system-focused renewal initiatives include the widespread use of CDM approaches to care for single chronic conditions, primary health care reform to better align primary and specialty care, EHRs, public-private partnerships, and new health care roles. The implementation of innovative strategies that may support CDM for patients with multiple chronic conditions, like the pan-Canadian EHR and new health care provider roles, seem to hold considerable promise to assist in patient care coordination, access to care, and substantially affect the quality of patients’ lives and other health outcomes. There is increasing support for the use of CDM approaches in the CKD population.  168  Friedman, Friedman, and Eggers (2006) note that population data in the USA indicates a decline in the incidence rate of CKD in people with DM from 1990 to 2002. They suggest that though the reasons for this decline are not yet well-understood, there is reason to believe that improved reno-protective management18 in persons with DM is likely a major factor. Like other recent authors writing about disease management with regard to DM and CKD (Chen, Scott, Mattern, Mohini, & Nissenson, 2006; Childs, 2007) these authors advocate for the use of disease management approaches. One of the leaders in CDM is BC where there are continued, coordinated, provincial efforts to improve the management of chronic conditions. These efforts are reflected in planning for primary health care renewal (British Columbia. Ministry of Health, 2007), the development of a Primary Health Care Network, and a pilot Chronic Disease Management Care Connectivity Team within which RNs function as care coordinators with specific focus on patients with complex chronic comorbidities. As regards CKD specifically, four projects were undertaken in BC between September 2005 and March 2006 as an outcome of the 2005 Chronic Kidney Disease Summit hosted by the BCPRA (BC Renal Agency, n.d.). All four projects focused on improving care for patients with CKD, DM, and CVD. Results of the projects included presentations to the BC Ministry of Health regarding primary and secondary prevention-related policy initiatives and decisions, and options for interdisciplinary collaboration for this disease cluster; development of a template defining key elements of collaborative relationships and/or integrated care; and development of a paper on strategies and tools to effectively engage health professionals in supporting patient self-management. In Ontario the CCACs too are using care coordinators/case managers to help patients 18  For example, “regulation of hypertensive blood pressure, improved glycemic control, and lifestyle modification” (E. A. Friedman et al., 2006, p. S51).  169  navigate the complex health care environment. This study did not provide information about these initiatives as none of the participants in the current research were accessing such programs. The intent is to draw these care coordinators/case managers from a variety of health disciplines including nursing, social work, speech pathology, and so on. In addition, the numbers of corporate-public partnerships to support CDM are increasing. GlaxoSmithKline’s community-based CDM program to support patients with diabetes, asthma, and COPD (PRIISMEÒ) has grown from partnership in 5 projects in 2004 to 13 projects across the province in 2007. Of relevance to the CKD population, Baxter Healthcare Corporation is partnering with selected health care regions in Ontario to enable the implementation of Renal Care Coordinators to improve disease management for patients with CKD. These new partnerships build on the success of a similar partnership with the Fraser Health Authority in BC. The findings from the present study suggest that the current chronic disease models, focusing entirely on the management of the disease may be inadequate to address the needs of patients with chronic conditions. In particular, the course of health care renewal does not appear to reflect the importance placed by the consumers in the present study on informational and management continuity for multiple conditions. The introduction of new health care provider roles, like patient navigators or care coordinators, may address some of the continuity of care issues faced by these patients. Again such measures seem more a response to the extant health care delivery environment than true health care delivery renewal to meet the needs of patients with multi-morbidity. An example of health care renewal that perhaps better addresses some of the issues identified by the consumers in this study is the integrated clinic for patients with CKD, CVD, and DM piloted by Providence Health Care in  170  BC. In this clinic model patients with CKD are also able to access specialty care for their CVD and DM. The pilot program will be expanded to other CKD clinics in the interior of BC in 2007/08. The findings from the current study also support the importance of opportunities for dialogue such as the Centre for Health Services and Policy Research (CHSPR) conference As Good As It Gets? Strategies for Improving Chronic Care Management (2005) in Canada and the recent Building Bridges conference on Integrative Solutions for Managing Complex Comorbid Conditions (Clarke & Meiris, 2007) in the USA. The CHSPR conference included researchers, clinicians, and policy-makers from BC and the USA. The findings from the current study resonate with and support many of the key messages from this conference including the importance of (a) taking a systemic view rather than focusing on or blaming individuals, (b) comprehensive change at all levels of the system, (c) focusing patient needs and wants, and (d) bolstering information resources. Clarke and Meiris conclude their conference report by identifying the key messages regarding improving care for patients with complex comorbid conditions. Some of the messages pertaining payment models are less applicable in the Canadian context. Other messages, like the need for a coordinated response across jurisdictional boundaries and the importance of developing an EHR to improve care for this population are directly relevant to the Canadian health care environment. Finally, there are many examples of attempts to bring stakeholders, including scientists, lay public, clinicians, and policy-makers, together to collaboratively develop strategies for chronic disease prevention and management (e.g., conferences, consensus meetings, etc.). These opportunities offer tremendous potential to effect positive change if the discussions move beyond a focus on wait lists and health care provider shortages (real or  171  potential). Some of these efforts are focused on specific areas of endeavor like setting research priorities for specific conditions. For instance, the national consensus conferences, Horizons 2000 (held in November 1999) and Horizons 2015 (held in November 2007). These conferences brought together national stakeholders (including scientists, clinicians, funding bodies, and lay public) in kidney, genito-urinary, and kidney transplantation research. Other collaborative initiatives have a broader focus. The five year, national, $260 million Canadian strategy for cancer control (Canadian Strategy for Cancer Control Governing Council, 2006) is an excellent example of the kind of national collaborative efforts that are required to address the large-scale system issues associated with coordinating all parts of the health care delivery systems for specific chronic conditions. Such initiatives fit well with and are supported by broad-based national strategies mandated by the federal government to address CDM, like the PHAC and the CCDPC. Working with stakeholders from across Canada the CCDPC provides leadership, nationally and internationally, in chronic disease prevention and control. Promising new developments include the Canadian Best Practices System. An early component of this system, the Canadian Best Practices Portal for Health Promotion and Chronic Disease Prevention provides on-line evidence-based best practice interventions, systematic reviews, and resources for health promotion and chronic disease prevention. This research provides support from the consumer perspective for the importance of the potential of these initiatives and others to break down problematic boundaries in current approaches to CDM. Resources Prior to starting the current research in 2005 I considered the context of the health  172  care environment in which it would take place, that is, the features of the health care system in Ontario and nationally. Since then, there have been changes affecting the governance, availability, and organization of health care resources in Ontario. There have also, in addition to health care renewal initiatives focusing on chronic conditions across the country, been significant strides made towards achieving a pan-Canadian EHR. On April 1, 2007, the LHINs took on their role for planning and coordinating health care services across Ontario. The LHINs now oversee two-thirds of the provincial health budget. It is anticipated that the LHINs will improve care coordination across providers; reduce delays, wait-times, duplication, and waste; and improve patient safety (Ontario Ministry of Health and Long-Term Care, 2007b). In June 2007 the Ministry of Health and Long-Term Care also announced that 500,000 more Ontario residents had access to a family doctor than in 2003 (Ontario Ministry of Health and Long-Term Care, 2007a). In their news release the Ministry of Health and Long-Term Care attributed this increase to family doctors working longer hours and taking new patients, the introduction of 150 FHTs since 2003, an increased supply of family physicians, and incentives to primary health care physicians to encourage patient enrolment. Despite such evidence of an actual increase in primary health care capacity there is still substantial (and influential) rhetoric about the shortage of primary health care providers. For instance, in September 2007 the Ontario Medical Association launched the third phase of their Campaign for Healthier Care in which they introduced Four Priorities. The first of these priorities is to “fix the shortage of health care professionals” because “Ontario is short 2,000 doctors and at least 8,000 registered nurses” and “we’d lose another 1000 family physicians and 1,500 specialists today if all those aged 65 and older decided to retire.”  173  (Ontario Medical Association, 2007). In addition, newspapers and other media sources regularly report on the shortage of physicians and other health care providers, negatively compare ratio of physicians to population in Ontario with figures for other provinces and territories, and speculate on possible causes and remedies. There is little consistency in the messages communicated to the public about the current state of health care services. In light of the confused messaging aimed at the general public it is not surprising that the current study findings suggest that there is some way to go in reassuring the public of their access to primary health care. The health care consumers with multiple chronic conditions who took part in this study experienced difficulties finding primary health care providers, and feared losing or not finding a primary health care provider. The study findings demonstrate the need for health care consumer reassurance through measures like consistent, accurate information about health care provider availability, the effectiveness of the measures being taken to address shortages, and access to resources to assist them to find appropriate health care providers in a timely manner. However, it is naive to think that the answers to health care services for people with multi-morbidity is simply more providers. The current findings, particularly as regards issues related to continuity of care, support the exploration of alternative, innovative care delivery models (Haskett, 2006). Examples of such care delivery models include the BC integrated CKD, CVD, DM approach to CKD clinic structure and composition; group practices; group consultations; and new provider roles (e.g., case managers, care coordinators, patient navigators, etc.); amongst others. Innovations like these offer opportunities to achieve improved efficiency and effectiveness of care for patients with multi-morbidity within the existing human resources by altering the way health care providers, both in primary and  174  specialty care, work and are organized. Such innovations may be supported by expanding the use of alternative reimbursement schemes that better support providers to “spend the time” to meet the needs of patients with multi-morbidity than does the established FFS reimbursement method. Another important health care renewal initiative arising from the First Ministers’ meeting in 2000 was the formation of Canada Health Infoway in 2001; this independent, notfor-profit organization comprises the 14 provincial and territorial Deputy Ministers of Health. Canada Health Infoway was formed to accelerate the development and use of electronic health information systems with the vision of a pan-Canadian EHR. The importance of the EHR to overall health care renewal strategies has been widely recognized (Romanow, 2002; Standing Senate Committee on Social Affairs, Science, and Technology, 2002). The initial target to have “a fully interoperable EHR for 50% of Canadians by 2009 [and]… 100% coverage by 2010” (Canada Health Infoway & Health Council of Canada, 2006, p. 3) has been recognized as ambitious. However, there is significant impetus for this initiative and it is anticipated to be completed by 2015 (Canada Health Infoway, 2007). In Ontario the 2007/08 budget includes $64 million for renewal of the provincial e-Health strategy under the oversight of the e-Health Program. The key features of the strategy include developing a secure EHR for all Ontarians, and expanding drug, laboratory, and diagnostic imaging information systems. The findings from the current study provide strong supportive evidence for the need to continue efforts to accelerate the implementation of strategies to improve health care communication and information management. The study findings clearly indicate the tremendous potential of comprehensive, integrated, accessible EHRs to positively affect the personal and health care outcomes for patients with multiple chronic conditions.  175  Assessing Health Care Renewal Progress Although health care renewal is receiving considerable attention it is generally difficult to assess renewal progress across Canada. It is the responsibility of the Health Council of Canada (HCC) to track and report on health care renewal progress. The December 2007 HCC report, Why health care renewal matters: Learning from Canadians with chronic conditions (Health Council of Canada, 2007b), examines health care and health care renewal in the context of results of several surveys of the experiences and expectations of Canadians living with chronic conditions. They report a contradiction between the high rating given by Canadians with chronic conditions to the overall quality of their regular medical care and the gaps or deficiencies in care identified from the survey results. Some of the gaps and deficiencies reported by the HCC were also apparent in the findings of the current study. For example, difficulties or delays in accessing regular care despite most patients having a regular provider, a need to provide more support to coordinate care, for example, reminders of appointments or investigations; and better communication about and coordination of care after hospitalization. The HCC suggests that “patients are satisfied with and express confidence in the system [because] … many people don’t yet appreciate how much better their care could be” (p. 50). The findings from the current study both support this position in that the more informed the patients described themselves as becoming the less confidence they expressed and the more proactive they became in trying to ensure the quality of the care they received. In their latest annual report (2007a) the HCC reiterates many of the recommendations made in their 2006 annual report to improve (a) access to needed health care, (b) quality of care, and (c) population health through a commitment to sustainability, coordination,  176  accountability, and decisions supported by best evidence (see Figure 5.1). To what extent these and other advice to governments, health care policy-makers, managers and providers in the December 2007 HCC report and their earlier annual report (2007a) are taken up remains to be seen. Both identify many areas in which progress is being made, but also draw attention to some short-comings of current health care renewal. Summary In this penultimate chapter I focused on those elements of the findings that offer new, original perspectives on, extensions of, and/or challenges to existing perceptions of the work that patients with multiple chronic conditions do with regard to their health care and current approaches to health care system renewal in Canada, and Ontario more specifically. The accounts of the participants in the current study provided a window into how they as consumers with multi-morbidity developed deliberate ways of dealing with the health care system and identified reasoned courses of action to take in dealing with their health care delivery context. The findings from this study add an important health care consumer voice to the existing discussions about health care delivery for people with chronic conditions, and particularly those with multi-morbidity. Perhaps because of a lack of clarity about what is happening provincially and across the country there is a perception that health care renewal is a bit of a pipe dream. There is recognition of the high costs associated with chronic conditions and the potential human and fiscal savings that may be achieved by renewing health care delivery to better address the particular needs of people with chronic conditions, but by and large the discourse about Canadian health care renewal activities does not reflect this. For example, the HCC makes note of the fact that the focus of home care renewal strategies “ignores Canadians with  177  chronic illness” (2007a, p. 7). So it is perhaps not surprising that re-engineering patients (May, 2006) to cope with their existing health care delivery context may be seen as more attainable. However, the risk associated with a move towards expecting patients to take active roles in improving their access to, continuity, and safety of their care, however transitory it is intended to be, is that the responsibility and accountability for these matters may devolve from the health care system to the individual patient. In turn this, and the introduction of stop-gap measures like provider roles to assist patients to navigate the complexity of the health care environment, may reduce the impetus for more fundamental health care system renewal to better address the needs of this vulnerable population of patients.  178  Figure 5.1 Pathways for Healthcare Renewal  Figure reproduced from Health Care Renewal in Canada: Clearing the Road to Quality (Health Council of Canada, 2006, p. 13). Contents of this publication permitted provided the intended use is for non-commercial purposes (Health Council of Canada, 2006).  179  CHAPTER SIX: SUMMARY, CONCLUSIONS, AND IMPLICATIONS Summary It is widely recognized today that chronic conditions present one of the greatest challenges to sustainable health care delivery. There is a growing body of literature and research examining and exploring the patient experience of living with a chronic condition and models for delivering care to patients with chronic conditions. Generally speaking there is a persistent tendency to focus on individual chronic conditions. There is little research examining how patients experience navigating the health care environment, especially in the context of multi-morbidity. This research study was designed to add to what is currently known about how patients with multi-morbidity experience navigating the health care system. The interpretive descriptive, qualitative research design was selected to enable the researcher to elicit the perspective of patients with multiple chronic conditions. A total of 20 patients, from three outpatient CKD clinics at academic hospitals, with CKD, and DM and/or CVD were interviewed by the researcher. The interviews were recorded and transcribed verbatim by the researcher. The research findings are the product of ongoing, iterative, inductive data analysis of the interview transcripts and other secondary data, such as field notes and chart review data. The participants’ accounts confirmed many of the findings of other researchers as regards continuity of care. The findings correspond to the three types of continuity identified by Haggerty et al. (2003). The participants also drew attention to the logistical issues and frustrations they faced because of their health care needs. What was particularly striking about the participants’ accounts of their health care context was how seemingly small  180  obstacles become major hurdles for patients with multi-morbid chronic illness, because (a) their conditions are chronic, so they encounter these challenges repeatedly over time; (b) these challenges complicate what are often already complicated lives; (c) each challenge may be multiplied over multiple chronic conditions, and so on; and (d) it is often difficult to find solutions for these apparently minor problems. The notion that molehills become mountains in the context of multi-morbidity was evident in the stories the participants told and the way they expressed themselves. The participants’ accounts depicted a process of ongoing discovery about the complex social structures within which their health care was delivered. They learned what they needed to know through their experiential observations, analysis of their observations, and developing theories about how it worked. Chance and trial and error played a large part in what and how these patients learned about the health care context they encountered, but they all described eventually learning what they needed to know in order to bridge the gaps in the system. The participants’ accounts speak to how many aspects of these patients’ health care experiences were outside of their control. However, the participants’ accounts describe how these patients responded strategically to what they encountered. The participants described actively and strategically taking on an expanded, more active consumer role in which they used their knowledge about the health care system to make conscious decisions, taking into consideration their lives as a whole, to tactically manage the system so as to increase the likelihood of having their needs met. These patients with multi-morbidity described engaging in substantial work beyond day-to-day self-management of their condition(s) to influence their access to care, the continuity of their care, and the quality and safety of their care.  181  Clearly the in-depth descriptions of the experience of navigating the health care system to obtain care for multiple chronic conditions offer many useful understandings that may be helpful to the clinical practice community in sensitizing it to the particular challenges facing this patient population. However, these findings, derived from the systematic analysis and thoughtful interpretation of the participants’ accounts, have value beyond adding to the body of experiential knowledge about what it is like to live with multiple chronic conditions in our society. These study findings make an important and explicit contribution to our understanding of the challenging health care context within which key health care renewal policy decisions are being made; systems are being planned, implemented, and monitored; and empirical knowledge is being brought to bear to solve complex and difficult systemrelated problems. The consumer voice captured in this study challenges the status quo in health care delivery for people with chronic conditions, especially for those with multiple conditions, and provides valuable support for ongoing health care renewal to better address the needs of this vulnerable population. Conclusions As a consequence of this exploration of health care system navigation from the particular perspective of consumers with multi-morbidity and consideration of the findings in relation to the literature, we can now draw the following conclusions: 1. The perspective of the people who have to deal with the health care system, such as those with multi-morbidities, can provide us with some very useful insights. This kind of research enables us to take a particular perspective on the ongoing discussions in various health care forums and use this perspective to inform our thinking about the implications of the various directions for health care renewal that are being considered.  182  2. Patients describe living with, seeking, and obtaining appropriate care for multiple chronic conditions as very challenging work. 3. Patients living with multiple chronic conditions describe how seemingly minor inconveniences associated with the health care system can cumulatively result in major barriers to their quality of life and negatively influence their capacity to access appropriate health care services. 4. Patients with multi-morbidity describe many disjunctures within the health service delivery system that negatively affect their access to appropriate care and their overall quality of life with chronic conditions. 5. Patients with multi-morbidity describe numerous misalignments between what information is required and when this information is available, including knowledge about the health care system and clinical information. These misalignments can also negatively affect the care they receive and their ability to access care. 6. Patients with multi-morbidity describe requiring active and strategic coping approaches to ensure that they are able to access the care and supports they require. 7. As patients with multi-morbidity begin to appreciate the extent to which accessing appropriate services depends upon the success of their own strategic coping approaches, they may develop concerns about what they believe are inherent inequities within the system. 8. The way in which we currently organize and deliver health care services to persons with chronic conditions may inadvertently reduce patient confidence in the quality and safety of the health care system, and the manner in which the system’s underlying values of equity and fairness are enacted.  183  9. There may be a gap between the public enthusiasm for consumer engagement in health care and the capacity of the system to make that feasible. Implications for Health Care Renewal Across Canada health care renewal efforts, toward increased effectiveness, efficiency, and long-term sustainability of Canada’s health care delivery system, are gaining momentum. The delivery of health care for chronic conditions is gaining more attention with increasing recognition that people with multiple chronic conditions are a particularly costly and vulnerable group of health care consumers. The current qualitative research adds the voice of this particular group of consumers to the health care discourse about health care system design and health care provider education. The findings encapsulated in the study conclusions enrich our understanding of the context in and about which health care renewal decisions are made. The many disjunctures and misalignments within the health care delivery system described by patients with multi-morbidity provide significant food for thought as we move forward with renewal of the health care delivery system. The dominant approach to health care delivery focuses on discrete conditions and increasing specialization of health care providers and services. Too, many health care providers are educated, and may prefer, to care for conditions in theoretically discrete body systems. Moreover, while many clinicians have access to communities of practice that support their continuing development in relation to distinct diseases, there are very few opportunities for this kind of support as regards dealing with comorbidities. Consequently patients with multi-morbidity describe encountering increased complexity related to their health care, because (a) they have to make sense of and reconcile the support and education they receive from each isolated provider in order to self-  184  manage their multiple chronic conditions, and (b) the insight of health care providers into the accumulated expertise, concerns, and work of these patients may be limited. These findings help us understand how the prevailing compartmentalization in health care delivery, education, and professional practice is inherently problematic for patients with multimorbidity and may negatively affect access to appropriate care and the overall quality of life of these consumers. These insights provided by this study call attention to the relevance of some of the changes that are starting to happen in the broader health care context. There are some important changes occurring in health care education that will support changes in care delivery for patients with multi-morbidity. These changes include the development and implementation of education programs fostering interdisciplinary collaboration, new health care roles, and a shift in how the roles of patients and providers are understood. Creating comprehensive approaches to interprofessional health education is a high priority for universities internationally and there is lively dialogue about how best to ensure that interprofessional teamwork becomes a basic competency for all of the health professions (Barr, 2005; D'Amour & Oandasan, 2005; Health Canada, n.d.; Herbert, 2005; Zwarenstein et al., 2001; Zwarenstein, Reeves, & Perrier, 2005). The growing numbers of acute and primary health care nurse practitioner programs across Canada illustrate significant systemlevel adaptations to try to reduce pressures in the health care system at certain points of care delivery. The increasing use of nurse practitioners may also improve linkages between conventional nursing and medical practice; nurse practitioner practice, as it is legislated and developed across Canada, is designed to be collaborative. These developments are promising, but the findings from this study also draw  185  attention to the potential challenges to translating these newer ideas into practice. The realities of the current health care environment include a large cadre of health care providers and educators who were originally educated and socialized in a more autocratic, hierarchical, and compartmentalized system. The study findings prompt us to consider how we might support the uptake of these ideas among practitioners in clinical practice settings and adequately support new health care professionals as they move, from education environments that model practice ideals, into professional practice. One possibility that we may consider for supporting knowledge translation across the education-practice interface is to create more cross-appointments between academic and health care institutions. Such cross-appointments have potential to increase dialogue and partnership between health care professionals principally located in academic teaching and research settings and clinicians principally located in practice settings. We should also consider opportunities to form communities of practice integrated across health care professions and disease conditions. For instance, there is untapped potential for interprofessional educational or strategic collaborative opportunities around specific conditions or multiple conditions. Patients with multi-morbidity also describe numerous misalignments between what information is required by patients and health care providers and when this information is available. These misalignments can negatively affect the care they receive and their ability to access care. These findings underscore the relevance of initiatives like the pan-Canadian EHR and the need to maintain or accelerate the development and implementation of the EHR. These findings give us a sense that from the patient perspective these initiatives seem to be going in the right direction since they are designed to explicitly improve the availability  186  of information. We might also consider the potential benefits of evaluating these developments in this sub-population of patients with multi-morbidity as they seem to be more consistently affected by the current misalignments. This study highlights how seemingly minor inconveniences associated with the health care system can cumulatively result in major barriers to the quality of life and negatively influence the capacity of patients with multi-morbidity to access appropriate health care services. For many of these consumers, accessing care for their multiple chronic conditions necessitates repeated contacts with different parts of the health care system over prolonged periods of time exacerbating any minor repetitive problem. Recognizing how serious these issues are for patients with multi-morbidity is important to understanding the impact of the changes we are contemplating making in the health care delivery system may have on these consumers. There is urgency to resolving these matters and this requires going through a thoughtful change process encompassing multiple facets (e.g., solutions like the EHR, role diversifications, and interprofessional education, etc.). However, we will also need to monitor vulnerable groups like those with multiple chronic conditions for unintended effects of the change process and new systems. The study findings illustrate that, while the health care delivery system may seem to be working (i.e., patients with multi-morbidity appear to be obtaining the care they need for each of their chronic conditions), it is perhaps only because of the very active and strategic efforts of these patients to accommodate a health care system that does not meet their needs. A limitation of this study is that it may have accessed those patients most capable of working within the system and with the time to do this work; it is possible that there may be other patients with multi-morbidity (e.g., those who are employed, less well-educated, from ethno-  187  culturally dissimilar backgrounds, etc.) who have fared less well than those who participated in the current study. It is important to recognize, and explore further, the full scope and nature of the health care-related work that patients with multi-morbidity do. Global social efforts to increase the involvement of people in their own health care may not be the sole answer to improving health care delivery for people with multi-morbidity. We also need to ensure that we make health care system changes that address the needs of these consumers and reduce the unnecessary work of being a patient. This study confirms that these people endorse what the Romanow (2002) and other reports tell us Canadians value, that is, a publicly funded, equitable, accessible system. However, the extent to which a concern for possible inequities arose in the study findings suggested that many people with multi-morbidity have experienced occasions when they perceived system equity was compromised by what they understood to be luck or hard work, not system fairness. The way in which we currently organize and deliver health care services to persons with chronic conditions may inadvertently reduce patient confidence in the quality and safety of the health care system, and the manner in which the system’s underlying values of equity and fairness are enacted. These findings highlight how systems and structures that purport equity of access to care, but where exceptions appear to be made on the basis of nonclinical features (e.g., who you know, how well you advocate for yourself, etc.), and about which there is considerable discourse focusing on resource scarcity and distribution (e.g., fiscal, provider, rural vs. urban, inter-provincial, etc.) can be both pernicious and damaging. In publicly funded health care the goal is a system that not only guides patients through, but does so in a way that people feel confident that they are receiving the same care that others in a similar situation are receiving. Without this assurance a sense of competition  188  is introduced that undermines the integrity of an equitable system. The concern about inequities highlighted in this study is something we need to think carefully about as we continue to refine the health care system. We want actively engaged consumers who know how to communicate and interact with the health care system, but we need to take care that we are not sending a message that there is a need to know how to manipulate that system. If publicly-funded, equitable, accessible health care is the goal, then it is important that we work to renew the health care delivery system such that patients can be confident that they can rely on the health care delivery system to ensure that they will receive the care they need when they need it. Implications for Research As we move forward with health care renewal and a care delivery system that is better designed for patients with multiple chronic conditions needing ongoing and acute care, we will need to develop an evidentiary basis for these decisions. The work of the research community offers tremendous potential to enhance and support the work of policy makers and other stakeholders in the health care renewal process. Contemplation on the findings from this study suggests some ideas for consideration with regards to developing this evidence. At a national level a considerable amount of population data are being collected and collated into a form that decision-and policy-makers can use to inform their decisions. For instance, chronic disease surveillance activities by the PHAC include the Chronic Disease Infobase, Cancer Surveillance On-Line, Major Chronic Diseases Surveillance On-Line, and the National Diabetes Surveillance System. In addition to these databases there are other disease-specific databases such as those maintained by the Canadian Institutes for Health  189  Information; for example, the Canadian Organ Replacement Register (CORR) captures a large amount of data about the CKD population requiring RRTs. Extant sources of data like this hold tremendous potential to answer research questions in large scale population-based studies and to provide population-based quantitative evidence to support and evaluate policy changes. These databases enable us to answer important epidemiological questions and examine incidence, prevalence, and distribution patterns using hospital admission and discharge, morbidity, and other data. However, there are some limitations to what population data are collected and available, and the quality and timeliness of some of those data. There is also a risk that, without additional contextual evidence, we may be misled by the results from studies of population-level data. Studies like the current study give us the ability to contextualize the evidence we have and make greater sense of it. Qualitative research offers us the opportunity to enhance our understanding of both the health care delivery and the consumer subjective experiential context. As we move forward with health care renewal we will need to bring an understanding of these aspects into our ongoing analysis of the changes we are enacting. To do this we need to inform our understanding of the health care delivery context by exploring the consumer experience, the influence of context on consumers, and the processes underlying how components of the system interact to shape consumer experience. Future research might include comparative evaluation of different care delivery models on patient experience, clinical, financial, and other outcomes (e.g., there are opportunities to examine differences in existing care delivery models for stage 1 to 4 CKD). There is also an opportunity for researchers, clinicians, and other stakeholders to work together to improve the population-level databases. The collaboration between CIHI,  190  CORR, and the clinical nephrology and transplantation community is an example of such endeavor. This collaboration has yielded initiatives such as continuous reporting (allowing more timely data entry by the CORR team), and the exploration of the feasibility of a national electronic or web-based application for collecting data (laying the foundation for moving away from paper-based data capture). The study findings also point us toward collecting data that may provide useful information about patient flow through the health care system. These data could enable quantification of things like how many contacts and the nature of the contacts patients with certain morbidity profiles have with the health care system and specific professions or services across time, the duration of these contacts (beyond hospital days), and so on. It also behooves us to consider the possible potential of the pan-Canadian EHR to enhance the population-level data we currently capture. We might explore the potential of the pan-Canadian EHR to (a) enable us to capture large amounts of both clinical and administrative data at the level of individual patients, and (b) extract this data on a population level. The study findings point to the numerous misalignments in information availability from the patient perspective. Collaboration between researchers, clinicians, and database developers may serve several purposes: (a) address some of the misalignments of information that impact patients and their access to safe and appropriate care, (b) maximize the research utility of the clinical and administrative data being collected, and (c) examine the effect of changes in the health care delivery system and translate the knowledge acquired into practice, policy, and renewal initiatives in a timely fashion. The ongoing changes in health care delivery across the country present tremendous opportunity for population-level and contextual research to inform health care renewal and  191  improve health care delivery for patients with multi-morbidity. The increasing awareness of the challenges presented by chronic conditions and comorbidity also brings a growing openness to and opportunity for more collaborative, interprofessional research endeavors toward improving the evidentiary base for change. Within the current health care environment there are numerous opportunities to examine the outcomes, at a patient and population level, associated with variations in care delivery models and interventional practices across Canada. Exploiting these research opportunities could produce evidence of best or promising practices providing crucial data against which to make informed decisions about health care renewal to meet the needs of patients with multi-morbidity. There are also many opportunities to examine the effect of implementing new health care provider roles (e.g., case managers, care coordinators, and primary and acute health care nurse practitioners) on the quality of life and other health outcomes of patients. As changes occur they ought to be studied so we can understand their effects and the conditions that determine those effects. It will be important that an ongoing effort be mounted to ensure that evaluation of the effects of planned health reform on vulnerable populations such as those with chronic multi-morbidities is conducted and that its results are made publicly available in a timely manner to allow for appropriate translation into clinical programming, administrative planning, and policy development. Conclusion This research captured the perspective of members of an increasingly important population of health care consumers – those with multi-morbidity. The patient perspective elicited during this research may differ from the perspective of other stakeholders and decision-makers associated with the health care system, therefore, the findings must be  192  interpreted with caution. However, the insights into the health care system gained from the perspective of these consumers provide much to ponder in regard to health care renewal, and research. There are extensive opportunities to thoughtfully translate the knowledge acquired in this study into actions that may (a) positively influence the quality of care for, and the quality of life of patients with multi-morbidity, and (b) provide all-important feedback on what works and does not work from the perspective of this important group of health care consumers and other stakeholders. The present health care renewal efforts across Canada, especially those that affect health care delivery for chronic conditions, are encouraging, but may not be sufficiently targeted to address the specific issues associated with multimorbidity. We need to continuously strive to improve the quality of the health care we deliver to patients with multi-morbidity by using information from many sources including the valuable perspective of the patients, as it is they who are most affected by our systems of health care delivery. As we tackle this daunting, but promising task we might do well to remember the words of Winston Churchill: Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, so far from discouraging, only adds to the joy and glory of the climb.  193  REFERENCES Alvarez, K., & Sciamanna, C. N. (2006). 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Effectiveness of pre-licensure interprofessional education and post-licensure collaborative interventions. Journal of Interprofessional Care, 19(Suppl. 1), 148-165.  216  APPENDICES  217  Appendix A  218  THE UNIVERSITY OF BRITISH COLUMBIA PARTICIPANT INFORMATION AND CONSENT LETTER (ORIGINAL) AGENCY (HOSPITAL) LETTERHEAD University of British Columbia Faculty of Applied Science Fred Kaiser Building 5000-2332 Main Mall Vancouver, B.C. V6T 1Z4 Canada Phone: (604) 822-6413 Fax: (604) 822-7006 RESEARCH FOR A GRADUATE THESIS TITLE:  School of Nursing T201- 2211 Wesbrook Mall Vancouver, B.C. Canada V6T 2B5 Tel: (604) 822-7748 Fax: (604) 822-7423 E-mail address  A Patient Perspective on Health Care System Navigation in the Context of Multi-Morbidity: Implications for Health Care Systems Redesign.  PRINCIPAL INVESTIGATOR: Eleanor Ravenscroft Ph.D. Student School of Nursing University of British Columbia (xxx) xxx-xxxx  UBC PRINCIPAL INVESTIGATOR: Dr. Sally Thorne Professor, Doctoral Thesis Supervisor School of Nursing University of British Columbia (xxx) xxx-xxxx  AGENCY NAME STAFF CONTACT Name Address Tel: (xxx) xxx-xxxx Pager: (xxx) xxx-xxxx  You are being asked to take part in a research study. Before agreeing to participate in this study, it is important that you read and understand the following explanation of the proposed study procedures. The following information describes the purpose, procedures, benefits, discomforts, risks and precautions associated with this study. It also describes your right to refuse to participate or withdraw from the study at any time. In order to decide whether you wish to participate in this research study, you should understand enough about its risks and benefits to be able to make an informed decision. This is known as the informed consent process. Please ask the researcher, Eleanor Ravenscroft, to explain any words you don’t understand before signing this consent form. Make sure all your questions have been answered to your satisfaction before signing this document.  219  WHAT IS THIS STUDY ABOUT? This is a study of how people with more than one chronic condition experience moving through the health care system. The researcher is Eleanor Ravenscroft. This research study is part of her work towards a doctorate in nursing degree. The clinic staff spoke with you about this study because you have chronic kidney disease and at least one other chronic condition. Your decision to take part in this study should be free and voluntary. You need to know enough about the study to make an informed choice about taking part or not. This letter explains: • Why the study is being done; • How the study will be done; • What you can expect if you take part in the study; • The possible benefits, risks, and costs; • The safety measures to protect your confidentiality; • How information may be used; • Your rights as a participant; • The people you can call if you have questions or concerns. Please make sure you understand all the information. You can ask Eleanor Ravenscroft or (agency contact) to explain any words or information you do not understand. Before you sign the consent form, make sure that you are happy with the answers to all your questions. WHY IS THIS STUDY BEING DONE? The reason for this study is to learn more about how patients living with more than one chronic condition experience moving through the health care system. People living with more than one chronic condition need care for each of their chronic conditions. This gives them a unique understanding of the health care system. Knowledge about the health care system from the point of view of people with more than one chronic condition is important. Many people involved in health care delivery and health care system design can use this knowledge. WHO WILL TAKE PART IN THE STUDY? About 10 to 15 patients from (agency name) will take part in this study. A total of 20 to 30 people will take part in this study. To take part in the study you need to be 19 years of age or older. You must have chronic kidney disease, and have diabetes mellitus or cardiovascular disease.  220  HOW LONG WILL THE STUDY LAST? The study will take about one year to complete. People taking part in the study will be involved for only part of this time, that is, to do one interview. WHAT IS INVOLVED IN THE STUDY? The researcher, Eleanor Ravenscroft, will interview patients with chronic kidney disease who also have diabetes and/or cardiovascular disease. She will ask some specific questions about your age, education, marital status, number of children, medical conditions, and so on. She will then ask you to talk about your experience of moving through the health care system. If a participant gives permission then Eleanor will review their clinic and/or hospital charts. She will collect information about your diagnosed conditions, the type of specialists involved in your care, and referrals. This will increase her understanding of their health care experience. You can still take part in the study if you do not give Eleanor permission to look at your charts. You can indicate whether you agree to this chart review at the end of this consent form. WHAT WILL HAPPEN WITH MY INFORMATION? Eleanor will combine the information from your interviews and charts with the information from other participants. She will study all the information she collects to learn more about how people with more than one chronic condition experience moving through the health care system. Studies often gather a lot of information. Eleanor would like to be able to explore this data again. She plans to do more studies in the future. If you agree, she will use your information from this study in future studies that ask different questions. Researchers call this secondary analysis. You can indicate whether you agree to this secondary analysis at the end of this consent form. WHAT WILL I HAVE TO DO? If you agree to take part in this study, Eleanor will talk with you about your experience of the health care system. Eleanor will work with you to choose a mutually convenient time and place to do the interview. The interview will last for about 90 minutes. Your interview may be shorter or longer depending on what you choose to tell her. Before starting the interview, Eleanor will take time to ensure that you have read and understand this form. Then she will obtain your written consent to participate. The consent will show if you give her permission to access your clinic or hospital charts. The consent will also show if you agree to her using your data from this study in future studies.  221  Eleanor may need to contact you again to clarify ideas discussed in the first interview or to arrange a second interview. If you do not want her to contact you again, she will respect your wishes. Please contact Eleanor if you think of anything that you would like to discuss or if you wish to add to your description of your experience. WHAT OTHER OPTIONS ARE THERE? You can choose not to take part in this study. If you choose not to take part in the study, it will not affect your usual health care. WHAT ABOUT CONFIDENTIALITY? Eleanor will make every effort to keep your personal information confidential. Interviews will be audio taped and transcribed (typed). Eleanor will assign a code number to identify your transcript(s). Only the investigators will know your name. If you name other people in your interview Eleanor will change the names to keep their identity confidential. Eleanor will keep the consent forms, audiotapes, list assigning code numbers, and the transcripts in a locked cabinet in her home office. Eleanor will encrypt all the electronic copies of the data on her computer. Eleanor will keep the audiotapes and written transcripts, with no names or identifying information on them, secure. If you agree to secondary analysis the researcher will keep your information secure for 5 years. If you do not agree to secondary analysis the researcher will destroy your information at the end of this study. The researcher will destroy all participants’ contact information at the end of this study. Eleanor will maintain confidentiality in publishing any findings from this and future research. For example, the researcher will not use information that could be used to identify a participant. Eleanor will make the findings from this research publicly available as a graduating thesis and other publications. She may also publish findings from future secondary analysis of the data from this study. Eleanor will provide you with a summary of the completed research if you are interested. ARE THERE BENEFITS TO TAKING PART IN THE STUDY? You are not expected to benefit directly from your participation in this study, but you may find having the opportunity to share your experience with the researcher rewarding. Knowledge learned from this study may benefit patients living with coexisting chronic conditions in the future.  222  ARE THERE RISKS TO TAKING PART IN THE STUDY? Some participants might experience anxiety or distress when recalling their experiences during the interview. Compensation In the very unlikely event that you are physically injured or become ill because you took part in this study you will receive medical treatment. Your health insurance will cover the reasonable costs of such treatment for any injury or illness that is directly a result of participation in this study. In no way does signing this consent form waive your legal rights nor does it relieve the investigators or involved institutions from their legal and professional responsibilities. WHAT ARE THE COSTS? There is no cost to participants and no payment for taking part in this study. Eleanor expects the study will only cost you time. Every effort will be made not to cost you money. For example, Eleanor will try to come to you for interviews so that you do not pay for travel. WHAT ARE YOUR RIGHTS AS A PARTICIPANT? Taking part in this study is voluntary. You may ask questions, refuse to participate, or withdraw from the study at any time. Doing so will not affect your usual health care. If you agree to take part, you will be free to refuse to answer any question. You may also have all or portions of the audio taped interview erased at your request. WHOM DO YOU CALL IF YOU HAVE QUESTIONS OR PROBLEMS? If you have any questions, concerns, or want more information with respect to this study, you may contact: Eleanor Ravenscroft at (xxx) xxx-xxxx, or (agency contact) at (xxx) xxx-xxxx, or Dr. Sally Thorne in the UBC School of Nursing at (xxx) xxx-xxxx. If you have any concerns about your treatment or rights as a research subject, you may contact: (name of agency REB chair), Chair of Research Ethics Board of the (agency name) at (xxx) xxx-xxxx, or the Research Subject Information Line in the UBC Office of Research Services at (xxx) xxx-xxxx. (Name of agency REB chair), and the Research Subject Information Line are not involved with the research project in any way. Calling them will not affect your participation in the study.  223  CONSENT AND SIGNATURES: I have been able to read this information and consent form. I have been able to discuss this study. I have had my questions answered to my satisfaction. I have received a signed copy of this consent form for my own records. My signature below indicates that I voluntarily consent to taking part in this study and I understand that I may withdraw at any time without affecting my medical care. My signature below also indicates that: I give the investigator permission to access my clinic chart: Yes No I give the investigator permission to access my hospital chart: Yes No I give the investigator permission to use my study data in future studies: Yes No  _______________________________ _____________________ Study Participant’s Name Study Subject’s Signature (Please Print)  ____________ Date  I confirm that I have explained the nature and purpose of the study to the participant named above. I have answered all questions. _______________________________ _____________________ Name of Person Obtaining Consent (Please Print)  ____________  Person Obtaining Consent’s Date Signature  224  THE  UNIVERSITY OF BRITISH COLUMBIA  Patient Participant Information and Consent Letter (Revised to Reflect Family Member Inclusion) AGENCY (HOSPITAL) LETTERHEAD University of British Columbia Faculty of Applied Science Fred Kaiser Building 5000-2332 Main Mall Vancouver, B.C. V6T 1Z4 Canada Phone: (604) 822-6413 Fax: (604) 822-7006 RESEARCH FOR A GRADUATE THESIS TITLE:  School of Nursing T201- 2211 Wesbrook Mall Vancouver, B.C. Canada V6T 2B5 Tel: (604) 822-7748 Fax: (604) 822-7423 thorne@nursing.ubc.ca  A Patient Perspective on Health Care System Navigation in the Context of Multi-Morbidity: Implications for Health Care Systems Redesign.  PRINCIPAL INVESTIGATOR: Eleanor Ravenscroft Ph.D. Student School of Nursing University of British Columbia (xxx) xxx-xxxx  UBC PRINCIPAL INVESTIGATOR: Dr. Sally Thorne Professor, Doctoral Thesis Supervisor School of Nursing University of British Columbia (xxx) xxx-xxxx  AGENCY NAME STAFF CONTACT Name Address Tel: (xxx) xxx-xxxx Pager: (xxx) xxx-xxxx  You are being asked to take part in a research study. Before agreeing to participate in this study, it is important that you read and understand the following explanation of the proposed study procedures. The following information describes the purpose, procedures, benefits, discomforts, risks and precautions associated with this study. It also describes your right to refuse to participate or withdraw from the study at any time. In order to decide whether you wish to participate in this research study, you should understand enough about its risks and benefits to be able to make an informed decision. This is known as the informed consent process. Please ask the researcher, Eleanor Ravenscroft, to explain any words you don’t understand before signing this consent form. Make sure all your questions have been answered to your satisfaction before signing this document.  225  WHAT IS THIS STUDY ABOUT? This is a study of how people with more than one chronic condition experience moving through the health care system. The researcher is Eleanor Ravenscroft. This research study is part of her work towards a doctorate in nursing degree. The clinic staff spoke with you about this study because you have chronic kidney disease and at least one other chronic condition. Your decision to take part in this study should be free and voluntary. You need to know enough about the study to make an informed choice about taking part or not. This letter explains: • Why the study is being done; • How the study will be done; • What you can expect if you take part in the study; • The possible benefits, risks, and costs; • The safety measures to protect your confidentiality; • How information may be used; • Your rights as a participant; • The people you can call if you have questions or concerns. Please make sure you understand all the information. You can ask Eleanor Ravenscroft or (agency contact) to explain any words or information you do not understand. Before you sign the consent form, make sure that you are happy with the answers to all your questions. WHY IS THIS STUDY BEING DONE? The reason for this study is to learn more about how patients living with more than one chronic condition experience moving through the health care system. People living with more than one chronic condition need care for each of their chronic conditions. This gives them a unique understanding of the health care system. Knowledge about the health care system from the point of view of people with more than one chronic condition is important. Many people involved in health care delivery and health care system design can use this knowledge. WHO WILL TAKE PART IN THE STUDY? About 10 to 15 patients from (agency name) will take part in this study. A total of 20 to 30 people will take part in this study. To take part in the study you need to be 19 years of age or older. You must have chronic kidney disease, and have diabetes mellitus or cardiovascular disease.  226  HOW LONG WILL THE STUDY LAST? The study will take about one year to complete. People taking part in the study will be involved for only part of this time, that is, to do one or more interviews. WHAT IS INVOLVED IN THE STUDY? The researcher, Eleanor Ravenscroft, will interview patients with chronic kidney disease who also have diabetes and/or cardiovascular disease. She will ask some specific questions about your age, education, marital status, number of children, medical conditions, and so on. She will then ask you to talk about your experience of moving through the health care system. If a participant gives permission then Eleanor will review their clinic and/or hospital charts. She will collect information about your diagnosed conditions, the type of specialists involved in your care, and referrals. This will increase her understanding of their health care experience. You can still take part in the study if you do not give Eleanor permission to look at your charts. You can indicate whether you agree to this chart review at the end of this consent form. WHAT WILL HAPPEN WITH MY INFORMATION? Eleanor will combine the information from your interviews and charts with the information from other participants. She will study all the information she collects to learn more about how people with more than one chronic condition experience moving through the health care system. Studies often gather a lot of information. Eleanor would like to be able to explore this data again. She plans to do more studies in the future. If you agree, she will use your information from this study in future studies that ask different questions. Researchers call this secondary analysis. You can indicate whether you agree to this secondary analysis at the end of this consent form. WHAT WILL I HAVE TO DO? If you agree to take part in this study, Eleanor will talk with you about your experience of the health care system. Eleanor will work with you to choose a mutually convenient time and place to do the interview. The interview will last for about 90 minutes. Your interview may be shorter or longer depending on what you choose to tell her. Before starting the interview, Eleanor will take time to ensure that you have read and understand this form. Then she will obtain your written consent to participate. The consent will show if you give her permission to access your clinic or hospital charts. The consent will also show if you agree to her using your data from this study in future studies.  227  Eleanor may need to contact you again to clarify ideas discussed in the first interview or to arrange a second interview. If you do not want her to contact you again, she will respect your wishes. Please contact Eleanor if you think of anything that you would like to discuss or if you wish to add to your description of your experience. WHAT OTHER OPTIONS ARE THERE? You can choose not to take part in this study. If you choose not to take part in the study, it will not affect your usual health care. WHAT ABOUT CONFIDENTIALITY? Eleanor will make every effort to keep your personal information confidential. Interviews will be audio taped and transcribed (typed). Eleanor will assign a code number to identify your transcript(s). Only the investigators will know your name. If you name other people in your interview Eleanor will change the names to keep their identity confidential. Eleanor will keep the consent forms, audiotapes, list assigning code numbers, and the transcripts in a locked cabinet in her home office. Eleanor will encrypt all the electronic copies of the data on her computer. Eleanor will keep the audiotapes and written transcripts, with no names or identifying information on them, secure. If you agree to secondary analysis the researcher will keep your information secure for 5 years. If you do not agree to secondary analysis the researcher will destroy your information at the end of this study. The researcher will destroy all participants’ contact information at the end of this study. Eleanor will maintain confidentiality in publishing any findings from this and future research. For example, the researcher will not use information that could be used to identify a participant. Eleanor will make the findings from this research publicly available as a graduating thesis and other publications. She may also publish findings from future secondary analysis of the data from this study. Eleanor will provide you with a summary of the completed research if you are interested. ARE THERE BENEFITS TO TAKING PART IN THE STUDY? You are not expected to benefit directly from your participation in this study, but you may find having the opportunity to share your experience with the researcher rewarding. Knowledge learned from this study may benefit patients living with coexisting chronic conditions in the future.  228  ARE THERE RISKS TO TAKING PART IN THE STUDY? Some participants might experience anxiety or distress when recalling their experiences during the interview. Compensation In the very unlikely event that you are physically injured or become ill because you took part in this study you will receive medical treatment. Your health insurance will cover the reasonable costs of such treatment for any injury or illness that is directly a result of participation in this study. In no way does signing this consent form waive your legal rights nor does it relieve the investigators or involved institutions from their legal and professional responsibilities. WHAT ARE THE COSTS? There is no cost to participants and no payment for taking part in this study. Eleanor expects the study will only cost you time. Every effort will be made not to cost you money. For example, Eleanor will try to come to you for interviews so that you do not pay for travel. WHAT ARE YOUR RIGHTS AS A PARTICIPANT? Taking part in this study is voluntary. You may ask questions, refuse to participate, or withdraw from the study at any time. Doing so will not affect your usual health care. If you agree to take part, you will be free to refuse to answer any question. You may also have all or portions of the audio taped interview erased at your request. WHOM DO YOU CALL IF YOU HAVE QUESTIONS OR PROBLEMS? If you have any questions, concerns, or want more information with respect to this study, you may contact: Eleanor Ravenscroft at (xxx) xxx-xxxx, or (agency contact) at (xxx) xxx-xxxx, or Dr. Sally Thorne in the UBC School of Nursing at (xxx) xxx-xxxx. If you have any concerns about your treatment or rights as a research subject, you may contact: (name of agency REB chair), Chair of Research Ethics Board of the (agency name) at (xxx) xxx-xxxx, or the Research Subject Information Line in the UBC Office of Research Services at (xxx) xxx-xxxx. (Name of agency REB chair), and the Research Subject Information Line are not involved with the research project in any way. Calling them will not affect your participation in the study.  229  CONSENT AND SIGNATURES: I have been able to read this information and consent form. I have been able to discuss this study. I have had my questions answered to my satisfaction. I have received a signed copy of this consent form for my own records. My signature below indicates that I voluntarily consent to taking part in this study and I understand that I may withdraw at any time without affecting my medical care. My signature below also indicates that: I give the investigator permission to access my clinic chart: Yes No I give the investigator permission to access my hospital chart: Yes No I give the investigator permission to use my study data in future studies: Yes No I consent/consented to my spouse/other family member(s) participation in my interview with the researcher: Yes No _______________________________ _____________________ Study Participant’s Name Study Subject’s Signature (Please Print)  ____________ Date  I confirm that I have explained the nature and purpose of the study to the participant named above. I have answered all questions. _______________________________ _____________________ Name of Person Obtaining Consent (Please Print)  ____________  Person Obtaining Consent’s Date Signature  230  THE UNIVERSITY OF BRITISH COLUMBIA FAMILY MEMBER PARTICIPANT INFORMATION AND CONSENT LETTER University of British School of Nursing Columbia T201- 2211 Wesbrook Mall Vancouver, B.C. Faculty of Applied Science Fred Kaiser Building Canada V6T 2B5 5000-2332 Main Mall Tel: (604) 822-7748 Vancouver, B.C. Fax: (604) 822-7423 V6T 1Z4 Canada thorne@nursing.ubc.ca Phone: (604) 822-6413 Fax: (604) 822-7006 RESEARCH FOR A GRADUATE THESIS TITLE:  A Patient Perspective on Health Care System Navigation in the Context of Multi-Morbidity: Implications for Health Care Systems Redesign.  INVESTIGATORS: Dr. Sally Thorne Professor, Doctoral Thesis Supervisor School of Nursing University of British Columbia (xxx) xxx-xxxx Eleanor Ravenscroft Ph.D. Student School of Nursing University of British Columbia (xxx) xxx-xxxx WHY AM I BEING ASKED TO READ THIS FORM? You have expressed interest in taking part in this research study. Before agreeing to participate in this study, it is important that you read and understand the following explanation of the proposed study procedures. The following information describes the purpose, procedures, benefits, discomforts, risks and precautions associated with this study. It also describes your right to refuse to participate or withdraw from the study at any time. In order to decide whether you wish to participate in this research study, you should understand enough about its risks and benefits to be able to make an informed decision. This is known as the informed consent process. Please ask the researcher, Eleanor Ravenscroft, to explain any words you don’t understand before signing this consent form. Make sure all your questions have been answered to your satisfaction before signing this document.  231  WHAT IS THIS STUDY ABOUT? This is a study of how people with more than one chronic condition experience moving through the health care system. The researcher is Eleanor Ravenscroft. This research study is part of her work towards a doctorate in nursing degree. You heard about this study from your family member. Your decision to take part in this study should be free and voluntary. You need to know enough about the study to make an informed choice about taking part or not. This letter explains: • Why the study is being done; • How the study will be done; • What you can expect if you take part in the study; • The possible benefits, risks, and costs; • The safety measures to protect your confidentiality; • How information may be used; • Your rights as a participant; • The people you can call if you have questions or concerns. Please make sure you understand all the information. You can ask Eleanor Ravenscroft or (agency contact) to explain any words or information you do not understand. Before you sign the consent form, make sure that you are happy with the answers to all your questions. WHY IS THIS STUDY BEING DONE? The reason for this study is to learn more about how patients living with more than one chronic condition experience moving through the health care system. People living with more than one chronic condition need care for each of their chronic conditions. This gives them a unique understanding of the health care system. Knowledge about the health care system from the point of view of people with more than one chronic condition is important. Many people involved in health care delivery and health care system design can use this knowledge. WHO WILL TAKE PART IN THE STUDY? A total of 20 to 30 people will take part in this study. Your family member was invited to take part in this study because they are 19 years or age or older, and they have chronic kidney disease, and diabetes mellitus or cardiovascular disease. Your family member has invited you to take part in this study as part of their interview with the researcher, Eleanor Ravenscroft.  232  HOW LONG WILL THE STUDY LAST? The study will take about one year to complete. People taking part in the study will be involved for only part of this time, that is, to do one or more interviews. WHAT IS INVOLVED IN THE STUDY? The researcher, Eleanor Ravenscroft, will interview patients with chronic kidney disease who also have diabetes and/or cardiovascular disease. She will ask some specific questions about their age, education, marital status, number of children, medical conditions, and so on. She will then ask them to talk about their experience of moving through the health care system. She will also review their clinic and/or hospital charts if they give consent for her to do so. Your family member has told you about their participation in this study. You have asked to take part in their interview with Eleanor. Your family member has consented to you taking part in their interview. WHAT WILL HAPPEN WITH MY INFORMATION? Eleanor will combine the information from this interview with the information from other participants’ interviews. She will study all the information she collects to learn more about how people with more than one chronic condition experience moving through the health care system. Studies often gather a lot of information. Eleanor would like to be able to explore this data again. She plans to do more studies in the future. If you agree, she will use your information from this study in future studies that ask different questions. Researchers call this secondary analysis. You can indicate whether you agree to this secondary analysis at the end of this consent form. WHAT WILL I HAVE TO DO? Your family member has agreed to take part in this study, and talk to Eleanor about their experience of the health care system. Eleanor has worked with your family member to choose a mutually convenient time and place to do the interview. The interview will last for about 90 minutes. The interview may be shorter or longer depending on what the participants choose to tell her. Before starting the interview or using your information, Eleanor will take time to ensure that you have read and understand this form. Then she will obtain your written consent to participate. The consent will show if you give her permission to use your interview data. The consent will also show if you agree to her using your data from this study in future studies. The consent will show that Eleanor has received consent from your family member for you to take part in their interview.  233  Eleanor may need to contact you again to clarify ideas discussed in the first interview or to arrange a second interview. If you do not want her to contact you again, she will respect your wishes. Please contact Eleanor if you think of anything that you would like to discuss or if you wish to add to your description of your experience. WHAT OTHER OPTIONS ARE THERE? You can choose not to take part in this study. If you choose not to take part in the study, it will not affect your usual health care or that of your family member. WHAT ABOUT CONFIDENTIALITY? Eleanor will make every effort to keep your personal information confidential. Interviews will be audio taped and transcribed (typed). Eleanor will assign a code number to identify your transcript(s). Only the investigators will know your name. If you name other people in your interview Eleanor will change the names to keep their identity confidential. Eleanor will keep the consent forms, audiotapes, list assigning code numbers, and the transcripts in a locked cabinet in her home office. Eleanor will encrypt all the electronic copies of the data on her computer. Eleanor will keep the audiotapes and written transcripts, with no names or identifying information on them, secure. If you agree to secondary analysis the researcher will keep your information secure for 5 years. If you do not agree to secondary analysis the researcher will destroy your information at the end of this study. The researcher will destroy all participants’ contact information at the end of this study. Eleanor will maintain confidentiality in publishing any findings from this and future research. For example, the researcher will not use information that could be used to identify a participant. Eleanor will make the findings from this research publicly available as a graduating thesis and other publications. She may also publish findings from future secondary analysis of the data from this study. Eleanor will provide you with a summary of the completed research if you are interested. ARE THERE BENEFITS TO TAKING PART IN THE STUDY? You are not expected to benefit directly from your participation in this study, but you may find having the opportunity to share your experience with the researcher rewarding. Knowledge learned from this study may benefit patients living with coexisting chronic conditions in the future.  234  ARE THERE RISKS TO TAKING PART IN THE STUDY? Some participants might experience anxiety or distress when recalling their experiences during the interview. Compensation In the very unlikely event that you are physically injured or become ill because you took part in this study you will receive medical treatment. Your health insurance will cover the reasonable costs of such treatment for any injury or illness that is directly a result of participation in this study. In no way does signing this consent form waive your legal rights nor does it relieve the investigators or involved institutions from their legal and professional responsibilities. WHAT ARE THE COSTS? There is no cost to participants and no payment for taking part in this study. Eleanor expects the study will only cost you time. Every effort will be made not to cost you money. For example, Eleanor will try to come to you for interviews so that you do not pay for travel. WHAT ARE YOUR RIGHTS AS A PARTICIPANT? Taking part in this study is voluntary. You may ask questions, refuse to participate, or withdraw from the study at any time. Doing so will not affect your usual health care or that of your family member. If you agree to take part, you will be free to refuse to answer any question. You may also have all or portions of the audio taped interview erased at your request. WHOM DO YOU CALL IF YOU HAVE QUESTIONS OR PROBLEMS? If you have any questions, concerns, or want more information with respect to this study, you may contact: Eleanor Ravenscroft at (xxx) xxx-xxxx, or Dr. Sally Thorne in the UBC School of Nursing at (xxx) xxx-xxxx. If you have any concerns about your treatment or rights as a research subject, you may contact: the Research Subject Information Line in the UBC Office of Research Services at (xxx) xxx-xxxx. The Research Subject Information Line is not involved with the research project in any way. Calling them will not affect your participation in the study.  235  CONSENT AND SIGNATURES: I have been able to read this information and consent form. I have been able to discuss this study. I have had my questions answered to my satisfaction. I have received a signed copy of this consent form for my own records. My signature below indicates that I voluntarily consent to taking part in this study and I understand that I may withdraw at any time without affecting my medical care or that of my family member. My signature below also indicates that: I give the investigator permission to use my study data in future studies:  _______________________________ _____________________ Study Participant’s Name Study Subject’s Signature (Please Print)  Yes  No  ____________ Date  I confirm that I have explained the nature and purpose of the study to the participant named above. I have answered all questions. I received written consent from the above-named participant’s family member to have them participate in their interview with the researcher. _______________________________ _____________________ Name of Person Obtaining Consent (Please Print)  ____________  Person Obtaining Consent’s Date Signature  236  Appendix B  237  Preliminary Interview Guide Review the information and consent form. Obtain consent from the participant. Body of the Interview: 1. I have some general demographic questions that I am asking participants. Please tell me about yourself. Prompts: •  Demographic data form.  2. Please tell me about your experience of the health care system. Prompts: •  Tell me about your experiences of health care providers.  •  Tell me about your experiences of support staff, for example, receptionists, in the health care system.  •  Tell me about your experiences of the how different parts of the health care system are connected.  •  What do you think works in the health care system?  •  How do you think the health care system can be improved?  Wrapping up: 1. What do you think is most important about your experience? 2. Is there anything else you would like to share with me about your experience? 3. Do you have any comments about this interview? 4. Are you interested in receiving a written summary of the study? 5. You may think of something you would like to add to what you have told me today. May  238  I call you next week to see if you want to add to this interview? 6. If I have some issues that need more explanation later in the study, may I call you? 7. Please call me if you think of anything you would like to add to what you have told me today, or have any concerns or questions.  239  Appendix C  240  Demographic Data Form 1. Date: ________________________ 2. Participant Code #: _____________ 3. Where do you live? Toronto _____________________ Elsewhere_____________________________ 4. Telephone number: ____________________________________________________ 5. How old are you now? _______________ 6. What is your marital status? Single____, married_____, divorced _____, common-law _____, widowed _____ 7. Do you have children? ______ How old are they? ____________________________________________________ 8. Describe your ethnic or cultural background:________________________________ 9. What language(s) do you speak at home? __________________________________ 10. What is your education background? Less than high school___, high school diploma ___, college____, university ____ 11. Employment status: Full time ___, part time ___, retired ___, unemployed ___, unemployed by choice ___, self employed ___ 12. When were you diagnosed with chronic kidney disease? ______________________ 13. What caused your kidney disease? _______________________________________ 14. What is your current level of kidney function? _________ _____________________ 15. When were you diagnosed as having diabetes? _____________________________ 16. Do you have Type I _________, or Type II diabetes ____________?  241  17. When were you diagnosed with cardiovascular disease? _________________________ 18. Describe your cardiovascular disease:________________________________________ ______________________________________________________________________ 19. Describe any other chronic conditions you may have:___________________________ ______________________________________________________________________  242  Appendix D  243  Chart Review Form 1. Date: ________________________ 2. Participant Code #: _____________ 3. Area Code: ____________________ 4. Telephone number: _________________________________________________ 5. Home language:______________________________ 6. Age: _______________ 7. Gender:  Male  Female  8. Most recent weight: ___________kg 9. Cause of chronic kidney disease:________________ _____________________________________ 10. Level of kidney function: _________________________ Date: _____________________________ 11. Other diagnostic information: Type of Condition  When Diagnosed  Diagnostic Test Used  12. Types of specialist physicians/clinics etc. routinely involved in care: ________________________________________________________________________ ________________________________________________________________________  244  ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ ________________________________________________________________________ _____________________ 13. Referrals: When  To Where  Reason  Outcome  Reason  LOS  Outcome  14. Hospital admissions: When  245  Appendix E  246  247  248  249  

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