UNIVERSITY OF CALGARY
The Meaning of Cardiac Rehabilitation to Patients
by
Sarah Sandham
A THESIS
SUBMITTED TO THE FACULTY OF GRADUATE STUDIES
IN PARTIAL FULLFILLMENT OF THE REQUIREMENTS FOR THE
DEGREE OF MASTER OF ARTS
DEPARTMENT OF ANTHROPOLOGY
CALGARY, ALBERTA
JANUARY, 2012
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In this thesis, I take an anthropological approach (using ethnographic methods) to explore the meaning of a cardiac rehabilitation program in Calgary, Alberta (Cardiac Wellness Institute of
Calgary (CWIC)) to its patients. Cardiac rehabilitation programs are exercise-based secondary
prevention for individuals suffering from a range of heart problems. Through education
classes and supervised exercise sessions, such programs aim to improve heart patients' overall
fitness, and promote lifestyle habits which can reduce risk of further disease. I examined how
the meaning patients attribute to the program fits within two different theoretical conceptions
of cardiac rehabilitation; as a site where power and surveillance discipine non-conforming
(unhealthy) bodies, or as a site where medical practices constitute an ideal form of care. I
demonstrate how the meaning patients attribute relates to the elements of their experience and
the structure of the program which fall under an overarching "logic of care" (Mol 2008).
ii ACKNOWLEDGEMENTS
I would like to express my appreciation to the patients and staff members of the
Cardiac Wellness Institute of Calgary who were so welcoming and helpful throughout my fieldwork, and for their willingness to participate in my research. Special thanks to Dr. Stone and Trina Hauer for their generosity and thoughtftilness in making my study possible.
I am extremely grateful for the guidance and support I have received from my supervisor, Dr. Charles Mather, throughout every stage of this process. Charles, I can't say thank-you enough. The dedication you show to your students and the knowledge and advice you impart (usually with a laugh) is simply wonderful.
Many thanks to Dr. Kathryn King-Shier who provided me with many opportunities for learning and who has been so generous with her wisdom.
Thanks also to Drs. Anne Irwin and Doyle Hatt for their time and contributions to my thesis as committee members.
I extend a most heart-felt thank-you to my dear parents, and the rest of my family, who are all wonderfully loving and supportive. Special thanks to my sister Rebecca for believing in me and helping me beyond measure.
Finally, thank-you, Josh Friesen for your incredible love and support.
iii TABLE OF CONTENTS
Abstract Acknowledgements Table of Contents List of Tables List of Figures
INTRODUCTION
CHAPTER ONE: ETHNOGRAPHIC BACKGROUND I. Introduction to Heart Disease and Cardiac Rehabilitation Heart Disease Causes of Heart Disease Interventions Prevention Cardiac Rehabilitation II. The Heart The Heart as a Pump Ways of Knowing the Physical Heart Meaning and the Heart III. Uncertainty, Meaning and Disease IV. Ethnographic Research Ethnography of Heart Disease Ontology of Disease The Logic of Care V. Ethnographic Setting Aspects Places Patients
CHAPTER TWO: RESEARCH METHODS Access Ethics Recruitment Sampling Study Population Data Collection Participant Observations Interviews Analysis
CHAPTER THREE: RESULTS Study Participants I. Questions and Uncertainty Theme 1: Doing
iv Doing Activities- Normal Life 59 Physical Limits - Cardiac Rehabilitation 63 Theme 2: Puzzling 67 Piecing Together Explanations 67 Comparing to Others 77 Considering Change 81 II. Practice, Structure, Care 84 Theme 3: Structure 85 Monitoring 85 Exercise 90 Staff Presence and Patient Uncertainty 91 Self-Monitoring 94 Protocol 98 Theme 4: Staff. 102 Access 103 Expertise 107 Care 108 III. Results Summary 112
CHAPTER FOUR: DISCUSSION AND CONCLUSION 116 Introduction 116 Uncertainty 117 Order 124 Uncertainty, Order and the Logic of Care 132 Conclusions 135
REFERENCES 140
APPENDIX A: Breakdown of Staff at CWIC 146
APPENDIX B: Educational Classes Offered at CWIC 147
APPENDIX C: Ethics Documentation 148
APPENDIX D: Maps of Cardel Place and WHC Exercise Locations 152
APPENDIX E: Sample Analytical Face-Sheet 154
APPENDIX F: Tabulation of Theme Expressions 155
APPENDIX G: Summary of Study Participant Characteristics 161
v List of Tables
Table 1. Expressions by Participant for Theme 1: Doing 155
Table 2. Expressions by Participant for Theme 2: Puzzling 156
Table 3. Expressions by Participant for Theme 3: Structure 157
Table 4. Expressions by Participant for Theme 4: Staff 158
Table 5. Expressions From Observation Data for Theme 1: Doing 158
Table 6. Expressions From Observation Data for Theme 2: Puzzling 159
Table 7. Expressions From Observation Data for Theme 3: Structure - Practices 159
Table 8. Expressions From Observation Data for Theme 3: Structure - Protocol 160
Table 9. Expressions From Observation Data for Theme 4: Staff 160
Table 10. Summary of Study Participant Characteristics 161
vi List of Figures
Figure 1. Physical Layout and Observation Posts at Cardel Place 152
Figure 2. Physical Layout and Observations Posts of World Health Club 153
vii 1
INTRODUCTION
Cardiovascular disease (CVD) is chronic condition pertaining to the circulatory system of the body. It is a problem of chronic inflammation (atherosclerosis) of the blood-carrying
vessels of the body which causes a restriction of blood flow (Stone et al. 2009). CVD is most
life-threatening when it affects the blood flow to the heart (called coronary artery disease
(CAD) or heart disease) and the brain (called cerebrovascular disease)(Heart and Stroke
Foundation 2011, American Heart Association 2011). It is a big problem in North America
and not without reason - it is the leading cause of death for both men and women, is the
primary reason for hospitalization and underlying cause of death in the United States and
Canada (Heart and Stroke Foundation of Canada 2011; American Heart Association 2011). In
Canada alone, CVD costs approximately $20.9 billion dollars a year in health care services
and related workplace losses annually1 (Heart and Stroke Foundation 2011). In Canada, there
are estimates that approximately 70 000 heart attacks occur each year, causing around 17 000
deaths (Heart and Stroke Foundation 2011).
Heart attacks (myocardial infarctions (MI)) are acute and potentially fatal events
associated with the heart-specific manifestation of CVD (known as coronary artery disease
(CAD) or heart disease). A heart attack occurs when the blood flow to the heart muscle is
restricted to the point where some of the heart muscle cells begin to die (Sherwood 2007).
Heart attacks may be caused by any mechanism which blocks blood flow to the heart,
including but not limited to: heart disease, damaged or malfunctioning heart valves, a
separation in the layers of the arterial walls and emboli or blood clots which lodge in the
arteries feeding the heart muscle (coronary arteries). Although the incidence of heart disease
1 The information provided by the Heart and Stroke Foundation of Canada was based on the latest data made available by Statistics Canada which was from the year 2008. 2 and death from heart attacks has decreased steadily over the past 50 years, hospitalizations for heart attacks rose in the years between 1994 and 2004 (Heart and Stroke Foundation 2011).
Research in the past sixty years in North America on the causes of C VD has shown that there are several contributing factors to the development of the disease which pertain to individual lifestyle habits. These factors include low physical activity or lack of exercise, a diet poor in fibre and high in fat and sugar, smoking, high alcohol consumption, and high stress levels (Framingham Study 2011). In the time since these findings began to develop, cardiac rehabilitation programs which aim to improve the overall fitness level of heart patients and reduce (through education and counselling) these modifiable lifestyle habits have popped up across North America. As Leon et al. (2005) state:
The term cardiac rehabilitation refers to coordinated, multifaceted interventions designed to optimize a cardiac patient's physical, psychological, and social functioning, in addition to stabilizing, slowing, or even reversing the progression of the underlying atherosclerotic processes, thereby reducing morbidity and mortality (p. 369).
Though cardiac rehabilitation programs began with a primary focus on exercise rehabilitation, the overall scope of the mandate of such programs widened in the early 1990s to address other causal factors such as diet and stress management (Leon et al. 2005).
The Cardiac Wellness Institute of Calgary (hereafter referred to as CWIC) is the name of the principal cardiac rehabilitation clinic in Calgary, Alberta. It was started in 1994 by several members of a local professional group of cardiologists (The Cardiology Consultants of
Calgary). Today, CWIC offers a variety of programs ranging from risk-factor assessments for individuals who have not been diagnosed or experienced heart problems (Early Assessment
Program), to a comprehensive rehabilitation program (called the Cardiac Wellness Program) for those who have been diagnosed with CAD, suffered a heart event (such as MI or angina), 3 or who have had or will have had heart surgery. In order to be eligible to participate in the
Cardiac Wellness Program (the costs of which are mostly covered by Alberta Health Services,
unlike the other programs), prospective patients require a referral from a physician (family
physician or cardiologist). The core component of the Cardiac Wellness Program is 12 weeks of scheduled exercise that patients attend twice weekly for one hour. The program also offers
optional education classes and/or individual consultations on proper2 diet and stress
management techniques. The mission statement of CWIC reads as follows:
The Cardiac Wellness Institute of Calgary (CWIC) is committed to the promotion of a heart-healthy lifestyle to the people of the Calgary Health Region. Participants and their families are given the knowledge and skills to take responsibility for their heart health, and to achieve a sense of accomplishment and lasting well-being (Taken from CWIC Website http://www.cardiologyconsultants.ab.ca/CWIC-intro.htm).
I learned about CWIC in the summer of 2008 when I began working as a research assistant to
Dr. Kathryn King-Shier, a cardiovascular researcher in the Faculty of Nursing and Department
of Community Health Sciences at the University of Calgary. My role as a research assistant
was to conduct telephone interviews as part of a study examining the decision-making process
that those with heart disease went through in their efforts to adhere to a heart-healthy
lifestyle.3 During interviews, when I asked participants about whether or not they felt they had
proper access to informative resources, I often heard participants say that they had gone
through the Cardiac Wellness Program at CWIC. These individuals spoke very highly of the
program and wished that their participation could be on-going.
2 The idea of a "proper" diet is somewhat problematic as I hope to demonstrate in this study - CWIC staff emphasize that what works for one person may not work for another.
3 We used the guidelines as set out by the Heart and Stroke Foundation on diet (low in fat and sugar and including 10 servings of fruits and vegetables per day), exercise (at least 30 minutes of a continuously raised heart rate three times per week), smoking (yes or no) and alcohol consumption (maximum 9 drinks per week for females and 14 drinks per week for males) for heart healthy lifestyles (Heart and Stroke Foundation 2010). 4
These comments came to mind the following year as I contemplated a research topic for my masters degree in anthropology. What was it about the program that these heart patients missed? What did the Cardiac Wellness Program mean to them? These are the questions I set out to answer in this research. I wanted to understand what it was about the program that left many past participants wishing they were still involved. What stuck with them? Was it the fact that they carried out exercise and learned about a heart-healthy diet?
Was it the social element of the program that these individuals valued? And if that was the case, what was characteristic of the social fabric of CWIC (and the Cardiac Wellness
Program) that past-participants so appreciated?
To answer these questions I conducted an ethnographic study of the Cardiac Wellness
Institute of Calgary. I carried out my research from August to December 2010 by attending and observing the education classes and exercise sessions within the program. I observed the
CWIC's main clinic site which was at the Talisman Center, a multi-use exercise facility located just South of Calgary's downtown core. In addition, I conducted 25 semi-structured ethnographic interviews with CWIC patients, volunteers (who are all past patients) and staff.
Taking an anthropological and ethnographic approach to understanding the meaning of cardiac rehabilitation programs to patients is appropriate for several reasons. Participant observations can provide a useful context in which to situate the comments and reflections participants make during interviews. Semi-structured ethnographic interviews allow for issues that are most relevant to study informants to emerge without too many pre-supposed notions on the part of the researcher.
Cardiac rehabilitation programs are founded on an understanding of the heart as a physical pump for blood, as a physiological entity whose meaning is attached to its 5 mechanical function, however previous anthropological research has illustrated how the heart
(and therefore heart problems) holds meaning beyond just that of being an essential organ of the body. Good (1977) argues that the heart, within a culture, extends beyond biological or mechanistic functions and reflects, instead, a complex web of meaning incorporating not only individual experiences and emotions but the fabric of greater social life and interactions.
Several studies support this view. Mather et al. (2007) showed that within Sikh culture the meaning of the heart is shaped by how the heart is depicted in the Adi Granth, which is a Sikh religious text (Mather et al. 2007). Rebhun (1994) and MacPhee (2003) show how societal roles and expectations can be the cause of heart distress, particularly among women. In Brazil, for instance, women are expected to hold the emotional burdens of others within their own heart, and suffer from peito aberto or a splitting open of the chest when their hearts become too full (Rebhun 1994). Among the Moroccan women that MacPhee (2003) studied, Quranic verse is prescribed to calm an ailing heart, as a calm heart is essential to one's overall health and well-being.
Studies more specific to heart disease and patients perceptions of their disease within
North America, though not stemming from the anthropological field particularly, are in line with concepts within anthropological theory. Mishel (1988), Cowie (1976) and Rosenfeld and
Gilkeson (2000), for example, all demonstrate that patients, in dealing with heart disease, search for and acquire meaning as an essential step in living with and understanding their illness. They suggest that disease causes uncertainty and part of dealing with this uncertainty is to create meaning around the disease. A famous anthropologist, Levi-Strauss, argued that the human search for meaning is synonymous with humanity's desire for order: "It is, I think, absolutely impossible to conceive of meaning without order" (Levi-Strauss 1978:12). The 6 connection Levi-Strauss makes between meaning and order can inform and add to the understanding we currently have about the nature of, and means through which, heart patients create meaning around their illness.4
Finally, as a setting for anthropological research, the cardiac rehabilitation clinic embodies both the influencing macro-structure of a social system (the medical system and the authority it carries reflects a structure which guides and influences patients) as well as individual-level interpretations (each heart patient may define and interpret the same situation in a unique manner and behave accordingly) (Goldenberg 1997). Both of these perspectives are ways of accounting for human behaviour (individual behaviour as being guided by an overarching episteme or by unique personal interpretation), however the approach which can best account for patterns in social behaviour has been a question long facing researchers and theorists within the social sciences (Goldenberg 1997).
Previous ethnographic studies in the area of cardiac rehabilitation and health care have highlighted this tension. Elizabeth Wheatley (2006) conducted an ethnography of heart disease and argues that cardiac rehabilitation clinics are settings where the medical profession, as a source of power, shapes and defines the bodies of individuals that express disease. These diseased bodies are deviant and are "normalized" (p.66) by the practices of the clinic which include the disciplining technologies of surveillance (Wheatley 2006). Wheatley( 2006) emphasizes power differential between the medical profession and individual patients with heart disease.
Annemarie Mol has also conducted ethnographic research in hospital settings which treat diseases related to CVD such as atherosclerosis of the leg (2002) and diabetes (2008). In
41 do not mean to conflate the meaning patients form around their illness with my study question, which regards the meaning patients form around their participation in cardiac rehabilitation. As part of this thesis, however, I hope to show that the two processes are intertwined. 7
The Body Multiple (2002), Mol suggests ways of moving past the divide between individual agents and overarching structures. To do so, she suggests that all entities (objects, concepts, diseases like atherosclerosis) do not exist as singular, pre-existing, knowable objects, rather they are entities that are done. That is, they are enacted, constantly, and through practices, and as a result, are multiple (Mol 2002). Within this framework, diseased bodies are not a result of a power struggle. The products of these practices (an x-ray, for example), are not an exertion of power but are the well-spring of still more practices. Something like atherosclerosis of the leg, then, is the outcome of the coordination of various practices and their results
(coordinating an x-ray image with the nature of a patient's complaints, for instance). Here there are no dichotomies, only multiple expressions of an entity which hang together in practices - practices which involve both health care providers and patients but also things like tables, knives, and microscopes.
In addition to providing a framework that moves beyond the dilemma of the individual and the powerful social structures in which they live, Mol has also provided, from her research in a diabetes clinic, a definition of care. In The Logic of Care (2008), Mol outlines elements of good care; she uses the term "logic of care" to describe simply what is practical or what makes most sense to do in health care where the aim is to help individuals live longer and live well with their disease. Mol (2008) points out that within any situation of care patients are active. She defines care as being an open-ended, non-linear process carried out by a team - patients, nurses, dieticians, physicians, family members - that requires the mutual respect of team members and the ability to adapt to the unpredictable nature of the human body (Mol
2008). She describes care as the outcome of cooperation. 8
The works of Wheatley (2006) and Mol (2002,2008) provided the major theoretical frameworks within (or against) which I couched the interpretation of my data. I examined whether the meaning of cardiac rehabilitation to patients was tied to the tension between individual interpretation and overarching power structures or to being part of a network of practices which are practical to do in the situation in which patients find themselves.
In Chapter 1, the background chapter of this thesis, I describe in greater detail the heart-related issues that potentially lead individuals to becoming a cardiac rehabilitation patient. I also identify and describe various medical practices (including interventions) which health care providers use in understanding, diagnosing, and treating these heart-related issues.
Following these descriptions I address theoretical concepts and research findings within the anthropological and heart disease/cardiac rehabilitation literature which are relevant to this study. In the last section of the background chapter I describe the ethnographic setting where this research was carried out, that is, the programs and places of the Cardiac Wellness Institute of Calgary.
In Chapter 2,1 outline the methods I used in carrying out this research. I describe the steps I took in gaining access to CWIC as a study site and obtaining approval from the
Conjoint Health Research Ethics Board. In this section I also provide justification for the ethnographic research methods I employed to answer my research question. In the last part of the chapter I summarize and substantiate the approach I took to analysing my data.
In Chapter 3,1 present the results of this study. I describe the four major themes that arose from participants answers to the question - What does the Cardiac Wellness Program mean to you? I divide this chapter into two sections. In the first section I present the analytic themes which pertain to the individual-level experiences and concerns that participants shared 9 in interviews - Doing and Puzzling. In the second section I present the themes relating to the broader context of cardiac rehabilitation - Structure and Staff.
In Chapter 4,1 situate my findings within the anthropological, cardiovascular and cardiac rehabilitation literature I put forward in the background chapter. I discuss my findings in relation to the meta-themes of Uncertainty and Order, and then bring analysis within the overarching theoretical frameworks provided by Wheatley (2006) and Mol (2002, 2008) that I outlined above. Finally, I point out several limits to this research and put forward several implications that it could have on both cardiac rehabilitation programs and future anthropological research in the area.
In this thesis I argue that the meaning of cardiac rehabilitation to patients relates to the elements of their experience and the structure of the program that fall under an overarching
"logic of care" (Mol 2008). The cardiac rehabilitation clinic is an ideal setting for carrying out what makes most sense in the care of cardiac patients. Patients in the program are active in their care and benefit from their access to a setting which facilitates this care as an open- ended, non-linear process. 10
CHAPTER ONE - BACKGROUND
I. Introduction to Heart Disease and Cardiac Rehabilitation
Heart Disease
Heart disease is caused by a physiological process known as atherosclerosis.
Atherosclerosis is a complex process of inflammation within the walls of blood vessels (Stone and Mancini 2009; Ross 1999). It is caused by the build-up of fatty deposits within the arterial walls which blocks the flow of blood through the vessels (Ross 1999). When inflammation exceeds the elasticity of the blood vessel, it constricts the flow of blood (Stone and Mancini
2009). When blood flow to the heart through one or more of the coronary arteries is blocked it starves the heart muscle of oxygen. This decreased flow of oxygenated blood to the heart tissue is called myocardial ischemia. Myocardial infarction (MI, or heart attack) occurs when the blocked blood flow is severe enough that the heart muscle cells begin to die (Sherwood
2007: 315; Stone and Mancini 2009).
Causes of Heart Disease
Research on the causes of heart disease began in the late 1940s. The Framingham
Study was a longitudinal study that enrolled over five thousand men and women for three different generations in 1948,1971, and 2002. Researchers conducted both physical exams and lifestyle interviews which they analyzed for common patterns related to the development of heart disease (Framingham Heart Study 2011). Later this study was expanded with other large-scale enrolment studies which aimed to provide a scientific basis for the common factors which lead to an increased risk of heart disease (called 'risk-factors'), and their reduction
(Rippe et al. 2007:11). Among the findings of the Framingham study, smoking cigarettes, having high blood pressure, being overweight and being physically inactive increase an 11 individual's chances of developing heart disease. In addition, the combination of the amount of fat and different types of cholesterol flowing through the bloodstream play a role in the development of atherosclerotic plaques in the arterial walls. These risk-factors are
'modifiable' because they pertain to behaviour or aspects of the body's make-up which are open to change - one can lose weight, become active, improve diet or quit smoking to reduce
the risk of the disease. Other factors, such as age, family history and sex are causal factors
over which the individual has no control and as such they are 'non-modifiable' (Rippe et al.
2007). Stress is also a causal factor for heart disease, however it is difficult to define. For
example, depression, anxiety and social isolation have been found to be associated with poor
cardiac prognosis (Strike and Striptoe 2004; Goldston and Baillie 2007 for review). Bunker et
al. (2003) however, point out that the term "stress," when referring to heart disease, includes
all of the following: "depression, anxiety, panic disorder; social isolation and lack of quality
social support; acute and chronic life events; psychosocial work characteristics; and Type A
behaviour, and hostility" (p.272). They conducted a review of the research on stress in its
above manifestations and found that depression, social isolation and lack of social support are
as significant in magnitude as are the conventional risk factors of smoking,
hypercholesterolemia and hypertension (Bunker et al. 2003:275).
Interventions
Research in the medical field has also led to the development of interventions which
can improve blood flow to the heart muscle. One option is angioplasty5, a procedure often
5 Percutaneous coronary intervention (PCI) is the broader medical term used to describe this type of intervention. It can include balloon angioplasty and the placement of metal stents. carried out after blockages have been identified during an angiogram.6 An angioplasty procedure involves inserting a balloon into the artery blockage via a catheter and pumping the balloon up with air so that the walls of the artery are stretched apart. This procedure expands the narrow passage in the artery (PubMed Heath 2011). Sometimes the arteries are kept propped open by a further step in this same process - the insertion of a metal stent To insert a stent, the vessel is expanded via angioplasty and then a metal mesh cylinder is placed in the area where the blockage is, in order to keep the vessel propped open. The most invasive way to solve the problem of blockages in the coronary arteries is via coronary artery bypass graft
(CABG) surgery. In this surgical procedure, blood to the heart is re-routed through a large vein taken from the leg or the internal mammary artery which is then connected (sewed) to the aorta and the affected artery at a point past the blockage (Medline Plus 2010). Often, more than one coronary artery will be by-passed during the procedure.
Prevention
In addition to the acute interventions described above, health care providers promote prevention of heart disease at the primary and secondary levels. Practice at the primary level focuses on preventing and modifying risk factors in hopes of halting or slowing the eventual development of the diseases (Harris 2009). The secondary level involves preventing subsequent coronary events after initial events and diagnosis of the disease (Ades 2001).
Cardiac rehabilitation is secondary prevention for heart disease. The aim of cardiac rehabilitation is to improve the fitness level of heart patients through a prescribed exercise
6 Coronary angiography (often referred to as angiogram) is a procedure which helps to identify or see the blood flow through the coronary arteries. During this procedure, a dye which is visible under X-ray imaging is injected into the blood stream of the coronary arteries providing a means of visualizing how the blood is flowing through those coronary arteries (Medline Plus 2010). 13 program7 as well as teach lifestyle habits which will reduce the risk of further heart events or development of disease.
Cardiac rehabilitation
Cardiac rehabilitation programs began in Canada in the 1960s, primarily as support to heart attack survivors. Since then, cardiac rehabilitation has expanded to support patients who have had heart surgery. It has also expanded to include disease prevention at both primary and secondary levels (Leon et al. 2005). In Canada, approximately two hundred and thirty such programs exist; they are funded at the provincial level, though additional funds come from fund-raising and fees paid by participants. They are predominantly outpatient programs.
Exercise and progressive aerobic training is at the core of cardiac rehabilitation and the success of cardiac programs is measured in terms of metabolic fitness (Kavanagh 2007;
Taylor et al. 2000). Program goals are set according to national standards and are predicated on being scientifically sound (Kavanagh 2007). The Canadian Association of Cardiac
Rehabilitation (CACR) (established in 1990) sets out the clinical care guidelines for cardiac rehabilitation. The goal of the Canadian Association for Cardiac Rehabilitation is "to provide leadership in clinical practice, research and advocacy in cardiovascular disease prevention and rehabilitation for the enhancement and maintenance of cardiovascular health of Canadians"
(Stone et al. 2009).
II. The Heart
The Heart as a Pump
The heart is the first organ to become functional in the developing human embryo
(Sherwood 2007). The heart is the center of the circulatory system which also consists of
7 Research has shown that chances of a recurring heart attack decrease as a result of the 12-week exercise program itself (Leon et al. 2005). blood vessels and blood - it pumps the blood, which carries essential nutrients, like oxygen and carbon dioxide, to and from the body's organs and tissues (Sherwood 2007). The heart is a dual pump made up of four different chambers, all separated by special one-way valves
(Sherwood 2007). The contraction of the heart pump is sparked electrically by autorhythmic cells, which generate electrical pulses called action potentials. Action potentials trigger mechanic heart cells (the working cells of the heart), to contract. The timing of these electric impulses choreographs the contraction of the different heart chambers so that blood is pumped properly. The chambers of the heart are separated by one-way valves which allow a unidirectional flow of blood from one chamber to the next. The heart chambers are connected to very special blood vessels which branch off into smaller blood vessels. The aorta is the main artery vessel leading off from the heart which carries oxygen rich blood through the branches of the circulatory system to the body's other tissues. The vena cavae is the main vessel leading into the heart and feeding it the de-oxygenated blood returning through the veins from the body's tissues. In the process of pumping, the heart alternates between two different states, one of "contracting and emptying" (systole) and the other of "relaxing and filling" (diastole) (Sherwood 2007:315).
Ways of knowing the physical heart
The methods we have for understanding the heart's physical function are intrinsically tied to our perception of it as a pump. Modern medicine has devised several ways of representing the heart's physical functions. Blood pressure is a representation of the workload on the heart; the pressure of blood within the arteries is a fundamental factor in how hard the heart has to contract in order to pump blood throughout the body; when the heart beats, the contracting ventricles (the chambers of the heart which expel blood) must generate enough pressure to exceed that of the major arteries in order to propel the blood forward through the vessels. The higher the arterial blood pressure, the greater the force required by the heart muscle to pump the blood properly. Therefore, by measuring blood pressure, one can get a sense of the workload on the heart at any given time. As a result, high pressure (hypertension) becomes a potential cause of heart failure or heart attack; when a ventricle can no longer generate a pressure higher than that in the circulatory system, it cannot pump out all of the blood being returned to it, and the veins feeding into the heart become backed-up with blood
(Sherwood 2007:325). Blood pressure is recorded like a fraction. The top number of a blood pressure reading is the amount of pressure in the vessels walls when the heart is in the systolic state (contracting and emptying) which means the blood vessel is expanded to accommodate the volume of blood leaving the contracting heart. This pressure is always higher than the diastolic pressure (bottom number) which is the pressure on arterial walls when the heart is in the diastolic state (relaxing and filling), and the blood vessels are relaxed and not stretched.
The electrical impulses of the autorhythmic cells in the heart can also provide a representation of the heart's function. Electrocardiograms (ECG) use special electrodes to capture the electrical impulses from the heart that travel through the bodily fluids to the body's surface: "Electrodes may loosely be thought of as 'eyes' that 'see' electrical activity and translate it into a visible recording, the ECG recording" (Sherwood 2007: 312). The spikes and waves that show up on an ECG read-out reflect the impulses which cause the heart muscle to contract, and can therefore be used to identify problems with the timing, regularity of the heart as well as any damage to the heart muscle (Sherwood 2007:312).
During exercise stress tests, ECGs measure the effects of exercise on an individual's heart function (PubMed Health 2011; American Heart Association 2011). For the test, an individual hooked up to an ECG monitor walks on a treadmill during which time the health care provider running the test will record the patient's blood pressure, heart rate, breathing and
o rate of perceived exertion. The treadmill then increases in speed and incline every three minutes. This test measures how the heart reacts to the increase in demand by the body for oxygen, and measures the blood supply to the heart, and whether or not it is reduced. Patients continue to walk until they can no longer keep up, they experience chest pains or difficulty breathing, or the ECG indicates that the heart muscle is not getting enough oxygen (PubMed
Health 2011). Another variation of the exercise stress test is the thallium stress test. This is similar to the exercise stress test however in this case, health care providers are able to capture images of the heart by injecting thallium into the bloodstream during the peak exertion rate of the individual on the treadmill. Thallium, a radioactive substance, is visible to a specialized camera and the heart tissues are then visible in the resulting image the camera produces
(PubMed Health 2011).
Meaning and the Heart
As part of the body, the heart is an organ in a complex biological system but it is also a symbol in complex networks of meaning (Mather et al. 2007).
In other times, people had different conceptions of the heart. Ancient Egyptians believed the heart was the center of knowing and emotion, associated with the soul. In traditional Chinese medicine the heart housed the spirit (shen) (Guameri, 2007:157), and the
Greeks also believed the spirit resided in the heart. In Aristotle's view the soul existed throughout the body, however he argued that the heart was the center to which sensory input comes together and from which behaviour and "bodily activity" emerge (Smith 2010:9).
8 The rate of perceived exertion (RPE) a way of measuring what a patient perceives his or her exertion during physical activity. Patients are asked to rate their exertion on a scale of 6 - 20 (Garcin et al. 1998). 17
Mumford (1996) shows that in Homer's Iliad, the heart was perceived as the center of emotions:
The heart can feel anger, love, joy, grief, dislike, pity, hope, fear, resentment, reverence. The heart thinks, judges, deliberates, devises, conjectures. The heart is the inner voice that prompts a person to do something; it is the inner character or disposition of a person. The heart denotes the private self where things can take place without outward manifestation (Mumford 1996:144).
Anthropological studies have discovered multifarious human conceptions of the heart.
In Northeast Brazil, in a small town and surrounding area in the state of Caruaru, the heart of a woman is a basin for the emotions of others (Rebhun 1994). Women in and around Caruaru are expected to open and welcome into their hearts the emotional burdens of others. Their chests expand to accommodate the burden of their emotions and those of others. Because the public display of emotions is discouraged in Caruaru these women house the entire community's emotions internally. A woman's heart has become a metaphor within the local language as being open and always providing "room for one more" (Rebhun 1994:173). Peito aberto is a folk illness described as the spiritual splitting of the chest, which is tacitly understood to be an illness resulting from a woman's overburdened heart. The build-up of anger, the expectations of embracing and internalizing others' emotions and not having a sanctioned outlet for one's own emotional suffering leads to this splitting open of the chest
(Rebhun 1994). The relief for peito aberto is provided by a folk healer, who first prescribes prayer and then, by using string to measure the woman's open chest, pushes down on the chest, makes the sign of the cross, and then re-measures with the string to show that the chest is now closed.
The ritual heals because it acknowledges the woman's pain, offers the presence of a supportive deity, and reminds the woman not only that her suffering is not as great as it might possibly be but also that her suffering has meaning and virtue (Rebhun 1994:170). 18
The intervention described above incorporates religious and performative aspects to help the woman attach meaning to her situation, which ultimately aims to help her to live with her emotional burden.
Among Saharan Muslim Moroccan women, the heart is a symbolic and physical entity wherein an individual's physical, emotional and spiritual experiences are connected (MacPhee
2003). MacPhee (2003) describes how the heart becomes the embodiment of the experience of stress among women in rural Morocco. She traces the link between spirituality and illness in
Moroccan housewives, where prayer is prescribed by the women for those suffering from illness. For the Moroccan women, emotional distress and social discord open one up to illness, the source of which is the heart. According to Islamic medicine, the spirit flows out from the heart to the rest of the body. Like the case of the women with 'hearts too full' in Brazil,
(Rebhun 1994), Saharan Muslim women are expected to keep in their emotions. The women
MacPhee (2003) studied were undergoing a time of great social change, and as a result, suffered heart distress. Because the source of wellness also stems from within, the "medicine for the heart" is prayer, the rhythm and sound of Quranic verse, as a means to a calm heart - a state which is essential for healing (MacPhee 2003:69).
In Iran, heart distress is a mirror or representation of social stress; "heart distress is a somatisation of the stresses individuals encounter in the social structure of Iranian society"
(Mather et al 2007:41). Good (1977) in The Heart of What's the Matter: The Semantics of
Illness in Iran urges researchers to analyse illness and disease as being "deeply integrated into the structure of a society" (p.26). He argues that diseases are not simply categories made up of specific symptoms, but are 'syndromes' made up of experiences, meaning, and social interaction (Good 1977:27). In Marageh, Good (1977) studied heart distress (maraz) which 19 the people of Marageh describe as a 'pounding,' 'trembling,' 'fluttering' or 'rapidly beating' heart, their complaints often accompanied by hand motions like a fist on the chest or hands pushed together to imply pressure. They will also say that the heart feels 'pressed or squeezed and bored or lonely' (Good 1977:28). Good (1977) argues that diseases are not knowable entities reduced to mere physiological function alone, but are made of up networks of meaning that extend beyond the individual body and emotions into the stresses and tensions of social structures and daily interactions. They incorporate networks of meaning that stem from both traditional and popular medicine traditions, allowing for an explanation that links both the physical and the social. They are not singular but are multiple and draw on a variety of areas in the creation of the explanatory model.
In Sikh culture, the heart is the source of goodness and compassion, as well as a stored
record of an individual's daily actions, which serves as the subject matter of God's ultimate
judgement (Mather et al. 2007). Mather et al (2007) looked at the meaning of the heart in Sikh culture to understand Sikh women's perceptions of their heart disease. They found that the
women in their study related their behaviours and actions to their heart by drawing from the
texts of the Adi Granth, which suggests that one should allow "God to radiate outward from
the heart - to be subsumed in goodness and compassion and not be misled or distracted by the
external world and the musings of the mind"(p.48). Women, as the emotional center of their
families, have an obligation to emulate the love and compassion that God radiates. The actions
of daily life are recorded in the heart, forming a record that God consults when judging the
goodness of one's life. Mather et al. (2007) show that the way older women within Sikh
culture make sense of their heart disease (in the context of stress), is fundamentally shaped by the Adi Granth, despite their recognition of stress as a risk-factor within the model of modern medicine (Mather et al. 2007).
Good (1977) and Mather et al. (2007) show through semantic-network analysis that heart distress is not a singular entity but the result of a multiplicity of factors which relate to how the heart is understood, the role of the heart in spiritual well-being, and cultural norms for expression of emotion and behaviour.
Some studies have shown that within North American culture, finding meaning in and understanding illness is also important. Cowie (1976) demonstrated that the meaning of heart attacks did not exist a priori for the patients he studied, but that they had to create the meaning and understanding on their own terms after they suffered an event. He found that comparison with other heart attack sufferers in the same cardiac care ward and reflection on, and re construction of, personal biographies was an important step in shaping an understanding of their illness. Cowie's (1976) study participants compared themselves to others on the basis of age, character and severity of previous heart attacks, types of symptoms, time elapsed since the event, and location in the sequence of medical care and rehabilitation for dealing with heart attack. Cowie (1976) suggests that individuals made these comparisons to ensure they were not the worst-off cases. Reflection on personal biographies helped patients find definite
"causal antecedents" (p.95), and comprehend how their heart attacks were the outcome of lifestyle habits. This reflection was not always easy - it was at times problematic and did not produce a clear outcome. When the patients Cowie (1976) studied were successful in finding causes, they were able to make their heart attack "intelligible" (p.94). Those who could not find a cause expressed that they could not make sense of their heart attack (Cowie 1976).
Comparing self with others and causality were also among the themes found in Rosenfeld and 21
Gilkeson's (2000) study of the meaning of illness for women with coronary heart disease. To make sense of their heart attacks or understand their symptoms and level of risk, the women compared themselves primarily with men, brothers and fathers. Interviews revealed that the women found that their search for causes for their heart attack was tied to understanding "why it had happened to them" (Rosenfeld and Gilkeson 2000:111).
III. Uncertainty. Meaning and Disease
Various areas of research have explicated the role of uncertainty and meaning in illness.
Mishel (1981), within nursing research, developed a theoretical model for understanding uncertainty in illness and how it relates to the inability on a patient's part to construct meaning:
" [Uncertainty results from] the inability to determine the meaning of illness-related events. It is the cognitive state created when the person cannot adequately structure or categorize an event because of the lack of sufficient cues. Uncertainty occurs in a situation in which the decision maker is unable to assign definite value to objects to events and/or is unable to predict outcomes accurately (p.225)."
Mishel (1988) describes uncertainty in illness as relating to what she calls a cognitive schema made up by three major components: stimuli frame, cognitive capacity, and structure providers. She posits that uncertainty results from a patient's lack of a cognitive schema around his or her illness. Mishel (1988) argues that the familiarity of events, both physical (i.e. symptoms) and environmental (i.e. within the health care setting) are influencing factors on the amount of uncertainty patients experience (Mishel 1988:225). She defines event familiarity in the health care environment as "habitual or repetitive nature of the structure of the environment" (p.226) where routine decreases uncertainty and novelty increases uncertainty (Mishel 1988). "Structure providers," (p.226) on the other hand, includes education, social support and credible authority (Mishel 1988). Education has the potential to 22 decrease uncertainty because it expands the basis of knowledge to which patients may correlate illness events. Health care providers, who "provide information on the causes and consequences of symptoms" (p.226) and the level of trust that patients place in these health care providers, make up what she calls "credible authority" (Mishel 1988:226). Health care providers supply information that can help patients develop a sense of continuity between both the expected and unexpected events they experience. Mishel and Braden (1987) suggest that the relationship a patient has with his or her health care provider is a crucial aspect to the uncertainty he or she experiences (Mishel 1988). Finally, social support networks provide sounding boards to help patients evaluate their experiences and symptoms. Mishel (1988) outlines all three of these factors as ways of providing structure to patients which can improve or decrease the uncertainty they experience.
Other studies have examined how patients respond when they are faced with a high level of uncertainty surrounding their illness. Julius Roth (1963) examined how patients with tuberculosis dealt with not knowing how long they would be required to stay in hospital, which was not a question that health care providers could answer on the spot because the length of stay depended on both the type of treatment patients required and how they responded to the treatments they did receive. Roth (1963) demonstrates that patients continually created and revised timetables as ways of formulating what he calls "reference points" (Roth 1963:5). These reference points, he argues, contributed to a framework (albeit one that was constantly revised and itself somewhat uncertain) that helped patients cope with being unable to project the length of their stay in the hospital (Roth 1963).
Renee C. Fox (1957;1959) demonstrates that uncertainty persists not only for patients in dealing with disease, but also for physicians. In Training for Uncertainty, Fox (1957) shows 23 that an integral part of medical students' education is learning to manage uncertainty. She chronicles the changes student physicians undergo in this regard as moving between two types of uncertainty physicians face - incomplete individual mastery of medical knowledge and the limits of medical knowledge itself. Fox (1957) reveals that first year students are more likely to consider the uncertainty they face in diagnosing disease, for instance, as a result of an incomplete mastery of the medical knowledge on their part. As student physicians become more confident, through practice and experience, they become better at discerning between their own limits and those of medicine, which also makes it easier for the student physician to
"give voice to the doubt he feels" (Fox 1957:219). Student physicians, through clinical experience and contact with more seasoned veterans of medicine, realize that they too experience and negotiate uncertainty as part of their work (Fox 1957). Fox also explicates the uncertainty that physicians who, in their work, must both care for and conduct research on patients suffering from disease which, at the time, landed outside of the realm of any known treatment options (1959:9). She illustrates how physicians felt uncertain in the face of what were sometimes conflicting goals of providing good patient care and conducting good research:
The members of the [Metabolic Research] Group (in the words of one physician) did a great deal of 'sounding off to one another about the strains they experienced in the face of the elements of uncertainty and unpredictability in their professional situation, their limited ability to help many of their patients, and the conflicts between 'good medical practice' and 'good research' to which they were subject (p.75).
Discussing and sharing ideas and problems, or "sounding off' as the informant put it, was an important way that the physicians talked about dealing with the uncertainty they faced in their work. It provided them "'a lift' which they needed and welcomed" (Fox 1959:76), though it often did not provide the answer to a particular problem relating to either an individual patient or research project.
IV. Ethnographic Research
Ethnography of Heart Disease
In Bodies at Risk: An Ethnography of Heart Disease, Elizabeth Wheatley (2006)
examines both the experiences and issues that individuals face after suffering a heart event as
well as the medical settings in which many heart patients find themselves - cardiac
rehabilitation programs. She describes the cardiac rehabilitation clinic as a site wherein the
"micro-politics" of medical power are carried out (2006:59).
At the individual level, Wheatley (2006) found that heart patients lose a sense of trust
in their body and as a result, feel vulnerable. Borrowing from Giddens (1991) she categorizes
heart attacks and medical diagnoses as fateful moments. Fateful moments are crucial defining
moments in an individual's life where the direction or course of action she chooses to follow
opens up - the future is uncertain, and the path she chooses to take will have impactful
consequences on the fabric of her life, which may not be reversible. Giddens (1991) argues
that at such defining moments, people consult with expert systems for advice on future
courses of action and how to move forward. In her study, Wheatley (2006) used the idea of a
fateful moment to describe her observations of heart patients:
A heart attack marks one such critical juncture, or 'fateful moment' in Giddens terms. As a life-threatening event, [a heart attack] ruptures the mundane character of daily routine, forcing recipients to confront mortality head-on. People who endure a heart attack take notice of their bodies and lives with a renewed sense of urgency. Upon receiving a diagnosis, they must deliberate over treatment options and craft strategic responses to their predicament (p.4).
After a heart event or fateful moment, heart patients, Wheatley argues, have to learn how to
interpret the sensations and symptoms they feel in their body in the wake of their heart event - 25 to perceive and negotiate bodily sensations and discern which of these might be another
(possibly fatal) event. After suffering a heart event, patients learn to interpret their bodies' messages as a necessary function of finding a renewed sense of peace and equanimity
(Wheatley 2006). Following Giddens' assumption that modern9 individuals are reflexive,
Wheatley employs the term reskilling to bring Giddens' idea of reflexivity into the body, i.e. to
transform the purely cognitive term {reflexivity) into one that involves the body and emotions
(reskilling). Wheatley (2006) uses the term reskilling to describe what people do to make
sense of and re-configure their lives; reskilling for heart patients is a coping mechanism
whereby they re-acquaint themselves with their bodies (Wheatley 2006:11). She suggests that
part of reskilling is learning how to gain "productive knowledge" from the body which can
lessen suffering and improve one's sense of security and reassurance (Wheatley 2006:23).
This sense of security and reassurance is distinct from "un-productive knowledge" that
increases emotional suffering, uncertainty and fear (Wheatley 2006:23). Wheatley's analysis
also showed that monitoring was one part of gaining productive knowledge. The monitoring
she describes is the practices carried out by health care providers (experts) in the clinic which
patients take over and carry out on their own as they progress through the program. The health
care experts transfer their knowledge to the patients, and as patients gain more confidence
they begin to trust in the knowledge of their bodies (Wheatley 2006:19). Wheatley argues that
those who do not attend cardiac rehabilitation miss the opportunity to be within such a context
which is helpful to reskilling (Wheatley 2006:27).
9 One could argue that there is no distinction to be made between modern and non-modern concerns. This is a debate for another day. Here, I accept, as Wheatley does, the theoretical concept of a reflexive individual as a reasonable assumption, especially since literature shows that illness causes individuals to reflect on and interpret their experiences (Dingwall 2001). 26
At the level of the clinic, Wheatley draws from Foucault to describe cardiac rehabilitation in terms of surveillance, disciplinary and confessional technologies. She describes how health care providers question ("interrogate" (p.68)) patients about their exercise and diet each time they arrive for their exercise sessions. Care providers hook the patients up to ECG monitors at each exercise session and walk around, watching the exercising patients to make sure that they do not exceed their prescribed target heart-rate and stay within the prescribed time limits:
The exercise equipment in the cardiac rehabilitation clinic is designed to discipline clients' bodies in order to produce 'fitness' while technical accoutrements monitor clients' bodies during exercise (Wheatley 2006:69).
According to Wheatley, ECGs, stethoscopes and blood pressure measuring equipment are technologies of surveillance and the cardiac rehab clinic is a "place to observe the practices of medical surveillance and the micro-politics of power," and where the body is the "ultimate site" of medical intervention (Wheatley 2006:59). The clinic is where medicine normalises and objectifies bodies by gathering information using confessional and surveillance technologies and compiling that information into a patient's chart or medical record. These practices, Wheatley argues, create "bodies as objects of knowledge" (Wheatley 2006:67).
The bodies Wheatley describes are not concrete and unchanging objects but are
"malleable" (p. 67). These bodies, along with the definition of the disease affecting them, are shaped by medical discourses and practices. These discourses, Wheatley (2006) observed, within the context of the cardiac rehabilitation clinics she studied, constantly shifted. That is, clinic staff moved back and forth between biological and lifestyle factors as explanations for the most likely cause of a patient's heart disease. Wheatley argues that this action on the part of staff keeps patients in the right frame of mind about the level of responsibility they hold for 27 their heart health, without making them feel so guilty that they are too depressed to make
positive lifestyle changes. She interprets the shifting back and forth as a way of advancing
risk-reduction efforts by patients (Wheatley 2006:76).
Wheatley observed that the individual-level reskilling efforts that patients made and
the normalisation of bodies through disciplining technologies by staff happened
simultaneously: "client's reskilling, dedicated to the care of the self, co-exists with the
normalizing and disciplining gaze of rehabilitation risk discourse and cardiac rehabilitation
regimens" (Wheatley 2006:95). Wheatley pairs Foucault's (1977) ideas of confessional,
disciplinary and surveillance technologies with his ideas of the technologies of the self. She
considers the cardiac rehabilitation clinic as a site where powerful medical forces "disciplin[e]
bodies" (p. Ill), but also demonstrates (through the description of the different styles of
reskilling) that patients respond differently to medical authority (Wheatley 2006:111):
As technologies of domination, the confessional, disciplinary and surveillance technologies of rehabilitation can be seen as normalizing and objectifying cardiac bodies as cases. Yet, simultaneously, these processes can be understood as technologies of the self, which enable participants to find a voice, and cultivate a style of being ill while giving expression to their illness (Wheatley 2006:111).
In the context of the cardiac rehabilitation clinic, Wheatley suggests that power is inherent not
in ideology but in the practices - surveillance practices, shifting of discourses etc - of the
clinic (Wheatley 2006:112). Against such power, Wheatley (2006) argues, individual patients
develop their own voice and style of being ill. These unique expressions of illness constitute
"transgressive manoeuvres" patients use to push back against the domination of medicine over
their bodies and their lives:
The medical surveillance and normalization of cardiac bodies is partial and incomplete. Although disciplinary power is exerted through confessional and surveillance technologies, the scope and depth of the medical gaze is deflected and diffused by transgressive manoeuvres of clients.10 Transgressions exist as evasions within and departures from the clinic, complaints and challenges to medical authority, and expressions of humour through clowning and joking. As manoeuvres to deal with discipline, transgressive strategies limit the effects of power exerted over cardiac bodies (p.111).
As the above excerpt shows, Wheatley's (2006) approach to understanding cardiac rehabilitation programs is to separate individual actions and experiences from those of an overarching power structure which aims to produce bodies and citizens of a specific kind.
Though she suggests that those in cardiac rehabilitation programs attend voluntarily and argues that the power exerted over the subjects is not violent or oppressive, her analysis portrays medicine and its patients as being in opposition. That is, medicine, through practices, seeks to create normalized bodies (i.e. they exhibit lower risk for disease than before) and citizens who behave in a certain way (heart healthy lifestyle), whereas these individuals, even though they attend cardiac rehabilitation voluntarily, find ways of "transgressing" the exertion of power and render it incomplete.
Ontology of Disease
Annemarie Mol (2002) also conducted an ethnography of disease -atherosclerosis of the legs. She, however, takes a different approach to understanding how diseases are created and understood (as opposed to the discourses of medicine put forward Wheatley (2006)). In the ethnography,11 Mol argues that instead of objects that exist and perspectives (subjects)
which gaze upon and know them, entities which make up our reality (disease, for instance) are
materialized through practices. Entities are not known, they are done. She states:
A way out of the dichotomy between knowing subjects and objects-that-are- known [is] to spread the activity of knowing widely. To spread it out over tables, knives, records, microscopes, buildings and other things or habits in
10 Wheatley used the term "client" rather than "patient" to refer to individuals attending cardiac rehabilitation. 11 Mol calls her work "an exercise in empirical philosophy" rather than anthropology, though as she says, she draws on literature from a variety of disciplines, including anthropology, to make her arguments. 29
which it is embedded. Instead of subjects knowing objects we may ... come to talk about enacting reality in practice (Mol 2002:50).
Mol (2002) and Wheatley (2006) both emphasize practices as being crucial to the materialization of (Wheatley) and/or reality (Mol). Whereas Wheatley (2006) argues for a disease which is singular but shifting with the discourses of medicine, Mol (2002) suggests that entities like diseases and bodies are multiple. Reality is multiple - it has multiple manifestations. For instance, the pain an individual experiences while walking is one atherosclerosis - a social atherosclerosis, as it affects how the individual is able to carry out his or her life. A slide under a microscope showing an inflamed arterial wall (lumen) is another atherosclerosis - a pathological one. Mol (2002) argues however, that rather than being a fragmented stack of aspects, these atheroscleroses hang together as a result of practices - the person who has pain upon walking shows up and presents his or her body to a physician who asks questions, feels the person's legs, and maybe asks for permission to harvest a sample of the person's leg artery to send to the lab, where another physician will view it under a microscope. Atherosclerosis, as it is enacted, is multiple - it is pain upon walking and a particular view under a microscope and it hangs together in the many practices of the clinic. The social atherosclerosis is tied together with the pathological atherosclerosis through the different actions and agents that are involved in such practices of care (Mol 2002).
This is easiest when the outcomes of such practices line up, such as when a patients complaints and the slide under the microscope both point to atherosclerosis. As Mol states:
"when the results of two diagnostic techniques coincide they jointly enact a common object"
(2002:61). However, what happens when practices contradict one another? They can still
point to a singular entity, however "one signifier must be discarded" (p.62), which creates a hierarchy within the practices. Some become more important, more reliable, better 30 representations of the body than others. Bringing atheroscleroses together, in this way, happens through what Mol calls coordination:
Coordination into singularity doesn't depend on the possibility to refer to a pre existing object. It is a task. This is what designing treatment entails. That the various realities of atherosclerosis are balanced, added up, subtracted. That, in one way or another, they are fused into a composite whole (p.70).
Mol (2002) outlines several ways in which coordination occurs in the clinic. One way is to add up test outcomes (like in the example above). If they do not line up, "one is made to win"
(p.84) resulting in a hierarchy among practices. In other scenarios, however, physicians charged with diagnosing and treating individuals use test outcomes as signs for action rather than as signs of a disease. Finally, different tests measure different things, and therefore, finding ways (through studies) of translating what one test measures into the terms of what another test measures represents another type of coordination.
Mol's portrayal of the multiple nature of reality (or disease) as being enacted, and coordinated through practices which do not always add up easily to one another, demonstrates the complex and sometimes uncertain nature of care. Physicians who are presented with patients' bodies and stories as well as the results of diagnostic tests which measure different things and may contradict one another, must still make diagnoses and decide on patients' treatments. Those involved in the care of individuals who may or may not have atherosclerosis of the leg are perpetually active in enacting and coordinating - doing - consistently and with a degree of uncertainty (Mol 2002). Mol (2002) portrays diseases and treatments not as a question of power and resistance but as one of action and coordination.
The Logic of Care
In The Logic of Care, Mol (2008) presents the results of her ethnographic research at a clinic dedicated to treating diabetes patients. The aim of the book, she says, is to "articulate 31 the specificities of good care so that we can talk about it" (p.2). Mol (2008) speaks of care as a
"logic" rather than a discourse or order because her goal is to identify the rationale behind good care practices and outline "what is appropriate or logical to do in a given situation" (p.8).
She describes care thus:
Care is a process: it does not have clear boundaries. It is open-ended. This is not a matter of size; it does not mean that a care process is larger, more encompassing than the devices and activities that are part of it. Instead it is a matter of time. For care is ... a matter of various hands working together (over time) towards a result... an interaction in which the action goes back and forth (in an ongoing process) (p. 18). Care is an interactive, open ended process that may be shaped and reshaped depending on its results (p.20).
The goals of good care exist on different levels. In a broad sense, good care will improve the
lives of patients with disease and hopefully delay death. On a more specific level, it can
require keeping the amount of sugar in the blood within a particular range, for instance. There
is a lot of work involved in care.
For one, patients must learn methods of care. Practices like testing and monitoring
blood sugar levels and either injecting the appropriate amount of insulin (or eating a sugary
substance), begin in the clinic, however diabetic patients must learn to carry out these
practices on their own and find ways of working them into the fabric of their lives. Patients'
lives are not all the same, however, and they will encounter different types of problems as
they face the task of caring for themselves. When different tasks such as monitoring blood
sugars and injecting insulin conflict with other, necessary practices of life (like what one does
for work, for example), good care involves attuning these variables to one another. Mol (2008)
suggests that care cannot be calculated ahead of time, or at all. It must be attuned. Patients and
12 Nurses are the ones who measure blood sugar and inject insulin for newly diagnosed patients (Mol 2008). health care providers, together, must decide what is most important. Some things must give way to others.
Other things can change in the doing of care, such as "target-values" (p.46). Target- values can change depending on whether or not patients (and/or health care team) can achieve the specific values in practice. Circumstances, such as a type of employment which makes continual testing and monitoring of blood sugars near to impossible means that not only the practices change but so can the targets the practices aim for. Perhaps the health care provider and the patient, in communication about these difficulties, agree that the patient should test and monitor blood sugars less frequently and at different times of the day. In adapting thus, the blood-sugar level they strive for can also change. They may adopt a higher blood-sugar value as the desired target so that the patient has less chance of becoming hypo-glycaemic
(which is more immediately dangerous than a high blood sugar level) during the work day. As
Mol (2008) articulates, "within the logic of care, identifying a suitable target value is not a condition for, but a part of, treatment. Instead of establishing it before you engage in action, you keep on searching for it while you act" (p. 46). Mol uses ("rehabilitates" (p. 55)) the word doctoring to refer to the multifarious ways that health care providers and patients must participate in care. Doctoring, Mol (2008) suggests, involves an entire care team, and is somewhat like "tinkering" (p.5 6) - it involves experimenting, attuning the variables of life and care to each other, and "being attentive, inventive, persistent and forgiving" (p.55).
Mol (2008) articulates the logic of care by comparing it to a logic of individual choice which has been an ever-increasing ideal within healthcare. This ideal has emerged as an attempt to provide patients with a greater voice and more power over what happens to them in the health care setting. The logic of choice suggests that individual patients, after receiving the 33 relevant facts and information regarding their situation from health care providers, should decide the course of action they want to pursue. Mol argues, however, that patients are already active -although they have no choice about having a disease, they are not passive but participate in their own care. She suggests that
caring is not a matter of control let alone of oppression. It does not involve staying free or making someone else into a slave. Instead it is a matter of attending to the balances inside, and the flows between, a fragile body and its intricate surroundings (p. 34).
The logic of care that Mol (2008) articulates considers all parties active in a fluid, constant process of adjusting and attuning to the uncertainties and unpredictable nature of life and bodies. The knowledge and the goals (and arguably power) inherent in care are diffused through practices, variables, care team members and bodies. They are active and they are multiple.
V. Ethnographic Setting
Aspects
The Cardiac Wellness Institute of Calgary (CWIC) was founded in 1994. The goal of the program is to promote a heart healthy lifestyle by giving participants and their families the skills to take responsibility for their health along with a sense of achievement, accomplishment and lasting well-being. At CWIC, staff from a variety of disciplines work together to reduce patients' risk factors through diet and emotional counselling, educational classes and exercise. See Appendix A for a breakdown of the interdisciplinary team of health care providers at CWIC.
CWIC offers a variety of programs ranging from risk-screening to secondary prevention for those already diagnosed with a heart-related issue. The patients I studied were part of the secondary prevention program called the Cardiac Wellness Program. This program 34 has several different components; overall assessment, educational classes, exercise sessions, and one-on-one counselling. The educational component of the program consists of a mandatory welcome class and a nutritional and emotional wellness orientation. These classes introduce patients to the program and what it has to offer.13 Patients who have decided to participate may browse through and sign up for any of the optional educational classes that the centre offers. CWIC offers a variety of classes which include classes on diet, stress, risk factors, and tips for leaving the program to exercise on your own. See Appendix B for a list and description of the classes offered at CWIC. The second aspect of the program is that of assessment. Patients undergo an exercise stress test that is monitored by a physician followed by a physician appointment and nurse consultation. The exercise stress test assesses patients' fitness level, the workload on their hearts, and what their risk-factors are. Care providers use this information to calculate patients' target heart rates for exercise and guide their cardiac rehabilitation plan.
The third aspect of the program involves exercise and risk-factor reduction. Patients exercise 2 mornings per week, have ongoing follow up (one-on-one counselling sessions) with dieticians and psychologists if they so choose, and are eligible for clinic appointments with the program cardiologists. At the end of the exercise component of the program, patients undergo a second exercise stress test followed by a physician appointment. Patients who live too far away to access the program, or who have to work or have other commitments and are unable
13 Some patients enter the program through the Early Discharge Clinic (EDC), a pilot study run by CWIC to decrease the amount of time between when patients leave the hospital and when they are invited to take part in the Cardiac Wellness Program. Rather than receiving a phone call inviting them to attend a welcome class a month or two after discharge, these patients are scheduled for a stress test at the CWIC clinic within a few weeks of their discharge from hospital. The same information about the program from the welcome class is given to the patient during a nurse consultation which follows their stress test. EDC patients are usually classified as "low- risk" (a similar program, the Early Cardiac Access to Care (ECAC) is for patients classified as having a higher risk). 35 to attend during the hours of operation (between 8 am and 12noon on weekdays) have the option of doing the home-program. In the home-program patients attend an orientation at one of the exercise centers and then take home chart sheets that they fill out after they have completed their exercise requirements. They then fax in their completed sheets with the details of their exercise regimes.
Finally, the follow-up phase of the Cardiac Wellness Program involves access to the educational classes for one year as well as exercise stress tests at the one and two year mark.
These stress tests include follow-up appointments with CWIC physicians.
Places
All components of the Cardiac Wellness Program are ordinarily carried out at the
Talisman center, a large fitness facility just south of downtown Calgary. The Talisman center is a multi-use fitness facility with offices for physiotherapy clinics as well as the Cardiac
Wellness Institute. One can access CWIC via the north doors of the giant building. Past an exercise area and dark hallway lined with scaffolding the Cardiac Wellness Institute doors lead into a grey yet brightly lit office resembling a doctor's office. There is a large circular desk behind which the front-desk staff sit. To the right purple upholstered bucket chairs face one another to make up a waiting area for patients. Down the hall and a ramp to the right is a medical clinic area divided into two separate bays, each equipped with a treadmill, ECG electrodes and monitors, patient examination table and a whole host of other medical equipment. To the right of the medical bays is an office where doctors will hold court with patients who have just completed their exercise stress test.
Ordinarily the exercise and educational components of the Cardiac Wellness Program would be carried out in the facilities of the Talisman center, however these facilities were under renovation during the time of my fieldwork, and the exercise and education components were held at different facilities throughout Calgary. The educational classes took place at the
Holiday Inn (which was located a few minutes south on a major roadway from the Talisman
Center) in the various hotel conference rooms (it was not always the same room). The rooms were very comfortable with circular tables and cushioned chairs, ice water, glasses, pens and notepads provided on the tables. At one end of the room would be a table with computer equipment and a projector and the instructor's items, and behind or beside that table would be either a pull-down screen or one that could be erected on a stand. There were mats piled at the back of the room for the relaxation classes.
Exercise sessions were split into two locations, one in the south and one in, the north of the city. The south exercise center was at a World Health Club, (WHC) just south of the
Holiday Inn on the same major roadway. Cardiac wellness patients used the cardio equipment
- treadmills, and exercise bicycles mostly - along with other WHC patrons. A folding table, manned by cardiac wellness volunteers and laden with plastic boxes containing patient charts, heart rate monitors and cleaning equipment, stood in front of the cardio work-out area.
Patients checked-in and retrieved their charts and heart rate monitors at this table when they arrived for exercise. The cardio area consists of several rows of treadmills, elliptical trainers and exercise bicycles. Behind the rows of work-out machines CWIC has placed two moveable carts, one with pens, water cups, reference information and blood pressure cuffs. The other has all the equipment necessary for testing and dealing with blood sugar levels. CWIC had also set up an office area and separate examination room (down the hall in the opposite direction) to conduct stress tests (in addition to those that took place at the CWIC main site) and carry out physician appointments. The north exercise center was at Cardel Place, a community recreation center which was much larger, (including facilities such as a swimming pool and hockey arena) and much more family oriented. The cardio exercise area was smaller and provided fewer machines than did the WHC. Because the space was smaller the check-in table with the charts and heart rate monitors and charts was located outside in a square foyer area between the exercise area and the physiotherapy clinic where CWIC had similarly organized the use of a consultation room where the physician would hold appointments with patients. A physician was always on site at both the World Health Club and Cardel Place during the scheduled exercise classes.
Patients
Who attends the Cardiac Wellness Program? An individual can be referred to the program for various different reasons. The "ideal" case would be a person who has experienced heart disease symptoms, has consulted his or her physician, and has been referred to a cardiologist and identified as having blockages in one or more of her coronary arteries. If an intervention such as C ABG surgery or PCI is necessary it is performed and afterward the patient would be referred for cardiac rehabilitation by his or her cardiologist. In the ideal case the patient referred to the program would clearly display one or more of the risk factors such as sedentary lifestyle, obesity and poor diet which would then be directly addressed by the various components of the program. Some patients, however, may have displayed no recognizable symptoms before experiencing a sudden acute event such as a heart attack. These patients are usually referred during their hospitalization for the acute event and/or intervention. Patients may have suffered a heart attack not associated with CAD, but as a 38 result of a dissection14 or issues with the heart valves. In these cases, cardiac rehabilitation is helpful for conditioning the heart and improving the overall fitness level of the patient. Some patients are referred for Cardiac Wellness Programs to actually condition their heart and improve their fitness level before undergoing scheduled CABG surgery.
14 A Spontaneous Coronary Artery Dissection (SCAD, otherwise known as a dissection) occurs when the layers of an (coronary) artery wall are forced apart and the blood pools in between them causing a blockage of the blood flow leading to myocardial ischemia (Basso et al 1996). 39
CHAPTER TWO - RESEARCH METHODS
I used an ethnographic approach to answer my research question. My fieldwork took place between August and December, 2010, and involved participant observations and formal and informal interviewing. Prior to my fieldwork I obtained access to CWIC with the help of
Dr. King-Shier, for whom I had previously worked, in addition to one of the founding cardiologists of CWIC and the program manager of the center. I obtained ethics approval from
the Conjoint Health Research Ethics Board (CHREB) prior to beginning my fieldwork. I made
use of the qualitative data analysis software program, Atlas.Ti, to conduct a thematic analysis
of my data.
Access
Every anthropologist, before they go in to the field, has to figure out how to get there.
According to Hammersely and Atkinson (2007), negotiating access can be cumbersome but
very important; although it takes time and requires sensitive negotiations, it can also be telling
of the structure and hierarchy of the organization which one is studying (Hammersely and
Atkinson 2007). As a professional organization within the provincial healthcare system,
CWIC is an example of a "formal setting where boundaries are clearly marked and may be
policed by 'gatekeepers'" (Hammersely and Atkinson 2007:49). Gatekeepers are key
personnel who can legitimately grant permission and access (Hammersely and Atkinson,
2007). Although organizations often have a formal hierarchical structure it can still be difficult
to know whose permission one must obtain for entry into the organisation (Hammersely and
Atkinson 2007:49). My access to the field began with a cardiovascular disease researcher in
the Faculty of Nursing for whom I had been a research assistant for several years. Upon
learning about my proposal to do research at CWIC she arranged for contact between the director of research (who was also one of the founding members) and me. We discussed my research interest in a meeting with my supervisor in early October 2009 whereupon he provided me with a letter of support; this letter served to strengthen my application for funding and act as a first step in negotiating access. Gaining permission from the top, however is not always all that a researcher requires, or necessarily the best way to achieve access
(Feldman et al. 2003).
In terms of understanding whose permission I would need in order to enter the field, I had the benefit of the experience of a post-doctoral candidate whom I had worked with in a research capacity in the Faculty of Nursing, and who had carried out her post-doctoral research at CWIC. Because of her familiarity with CWIC, she had an idea of the relationship between the director of research and the program manager, and advised me to contact the program manager and negotiate access with her directly.
Although I had pertinent information around who was important to contact regarding access, I had yet to succeed in negotiating access to CWIC with the program manager. It was not until March, when my thesis proposal was taking shape and the idea of fieldwork started to become a reality that I finally contacted her. In an e-mail I explained that I had received permission from the director of research to conduct my study at CWIC, and I inquired about what she might need from me before I started my research, which I would like to do in May.
In hindsight, a better wording would have indicated that I was seeking permission (from her in particular) to conduct my study at CWIC, not that I had already received it.
Feldman, Bell and Berger (2003) describe the ambivalent relationship researchers might have with gatekeepers. They suggest that gatekeepers may act as both obstacles and facilitators, who, though they may be concerned with practical matters of the research, may 41 provide legitimacy to the research and be helpful in the research process (Feldman et al.
2003). Both of these aspects were true of my relationship with the program manager (the primary gatekeeper in my study). As the "captain of the ship" (Sampson 2004) the program manager had practical concerns about the nature of my research and requested a copy of my research protocol. The principal concerns that the program manager raised pertained to practical and methodological matters as Feldman, Bell and Berger (2003) had suggested. She expressed concern about seven major points: 1) lack of space (would I require a space within the CWIC offices), 2) patient safety (where would I be conducting interviews, and did I have
First Aid), 3) timelines (patients do not begin exercise until 12 weeks after the Welcome
Class), 4) recruitment methods and study population (same concern as timelines, and how would I recruit a demographically consistent patient population), 5) researcher subjectivity
(how will I account for this and how will it affect my results), 6) staff involvement (will their security be jeopardized if they do not participate?), and 7) current spatial configuration of
CWIC (construction meant that the program components were carried out at various sites across the city). In a series of meetings, we ironed out the project manager's concerns. The major obstacle this posed for my data collection was one of timing -1 had underestimated the amount of time that negotiating access would require. My aspirations to begin fieldwork in
May were undone -1 started my fieldwork in the middle of August, 2010.
It was during these meetings, however, that the positive nature of my relationship with the program manager as gatekeeper emerged. Though she expressed concerns regarding permission and logistics, she was both thoughtful and helpful in terms of providing possible solutions. For example, she arranged for me to attend a First-Aid course for new staff members, and offered helpful ideas about recruitment methods based on her knowledge of how the program operates and the nature of the patient population. She also helped facilitate my research access by informing staff of my presence at the exercise sessions and education classes. Finally, as yet another example of many helpful gestures, the program manager-as- gatekeeper facilitated my data collection by arranging observation opportunities in the clinic office during patient-nurse consultations and patient stress-testing, which would have been difficult or impossible for me to do on my own.
Ethics
I obtained ethics approval for this project from the Conjoint Health Research Ethics
Board (CHREB) (See Appendix C for ethics documentation). Acquiring clearance was a process which ran concurrently with my negotiations for access to the field. Securing ethics clearance was a rigorous process which involved submitting, in addition to the application, my full research proposal, the consent forms, interview questionnaires, and recruitment posters. It also involved answering the CHREB committee's concerns about my application. Because my prospective study participants were patients within the Alberta Health Services care provision, it was essential that my presence and any actions I took toward recruiting patients would not pose any kind of barrier toward their access to care. One of my responsibilities was to make it clear to patients that they were not obliged to participate in my study and that their refusal would not jeopardize their access to care. This responsibility affected my study most in how I recruited participants (which I will further discuss in the next section). Another concern the ethics committee raised pertained to the staff members of CWIC and whether or not their agreement or refusal to participate would jeopardize their employment in any way. To ensure that my research was sensitive in this regard, I did not divulge any information about which staff participated in the study to other staff members or the management of the CWIC. For the 43 patients I interviewed, I obtained written informed consent, and for any scenario where I was observing orientations of new patients or patient-nurse consultations, I obtained verbal consent from the patient in those cases. The CHREB granted clearance for my study June 26th,
2010.
Recruitment
Recruiting study participants who are current patients within the provincial health care system requires extra care and attention. It is essential to make clear to potential participants that their refusal to participate in the study does not jeopardize their access to care in any way
(as per the CHREB). In addition, recruiting patients in the context in which they are receiving care requires informing them of the study in such a manner that they do not feel cornered. I recruited patients by posting information about my study at the CWIC main office and handing out information flyers to patients at the exercise sessions. From my observation post at the check-in table at the two different exercise sites, I handed patients flyers with information about my study and suggested they contact me should they be interested in participating. I also taped up information posters with pull-tabs containing my contact information onto the same check-in tables so that patients could learn about the study and take away my contact information without needing to speak to me directly. I attended educational classes and described my study to the participants in the class and handed out flyers which contained my contact information. Patients indicated their desire to participate by writing their name and contact info on the flyer and handing it back to me at the end of the class. I began recruiting patients in early November and finished my data collection in mid-December. I conducted my final interview on December 17th, 2010. 44
Sampling
Ethnographic observations inform both interviewing and sampling (Spradley 1979).
Observations helped me to understand the different participants I observed at the field site, and informed me about the purpose that potential informants might serve in my research
(which relates to purposive or theoretical sampling) (Bernard 2006). I sent out recruitment flyers at the exercise sessions and educational classes I attended - due to the ethics committee requirement that I not directly ask patients to participate in my study, my study sample was made up of those who volunteered to participate, however several individuals whom I had observed and considered to be good potential study participants did volunteer themselves for my study.
In addition to the self-selection/purposive approaches, I had a snowball sample of two.
Snowball sampling usually begins with one informant who will suggest the names of others who might be helpful in the research (Bernard 2006). The first patient I interviewed, Maurice
(all patient names are pseudonyms) was an acquaintance of mine from outside the cardiac wellness setting (we both belong to a community of musicians in Calgary). After I explained my study he enthusiastically volunteered himself as a study participant. He then mentioned that another member of the music community, Dennis, was in the program and had just finished the exercise portion. He offered to ask Dennis if he would be interested in participating. When Maurice came to our scheduled interview the following week he informed me that Dennis was willing to participate in my study.
Study Population
The participants in this study were all current patients, volunteers or staff members at
CWIC. Patients were streamed into the program by physician referral after suffering a heart 45 event such as an MI, being diagnosed with CAD or receiving results from medical screening tests. The volunteers I interviewed were all active volunteers at CWIC and had participated in the program in the past. The staff members I interviewed were from various disciplines ranging from exercise leader to cardiologist.
Data Collection - Participant Observations
Ethnographers are concerned with cultural behaviour, knowledge and artefacts
(Spradley 1980). Researchers can describe and begin to understand cultural behaviours and artefacts first by simply observing them. Participant observation is an important data collection method within ethnography, although the degree of participation on the part of the researcher can vary from non-participation to complete participation (Spradley 1980). In this study I conducted passive and moderate participant observations (Spradley 1980) of the various aspects of the Cardiac Wellness Program. In passive participation the ethnographer "is present at the scene of action but does not participate or interact with other people to any great extent" (Spradley 1980:59). The majority of my observations were passive participation because they happened in a highly structured setting where those present had established roles, whether staff or patients. I qualified to participate neither as a staff member (I lacked the proper training) nor as patient.
During the exercise sessions I gathered observation data from two different kinds of observation posts (Spradley 1980). These were similar in function at both Cardel Place and
World Health Club however their exact location was different due to the different physical layout of each exercise center (see Appendix D for a map of both exercise locations). At each exercise location I conducted passive participation (Spradley 1980) in the exercise areas behind the treadmill equipment (observation post #1). I was able to stand here and observe the patients exercising on the treadmills, exercise bikes and elliptical trainers (marked as OP#l in both figures of Appendix D). When they were not directly engaging with patients, staff stood in this area to observe and write notes in patient charts. Focusing on the patients while standing at the observation post allowed me to observe how the staff interacted with each other as well as with the patients. I stood by myself or beside some staff members, sometimes engaging them in conversations.
In certain contexts I was able to participate more fully in the activities of cardiac rehabilitation. My second observation post (OP#2 on both figures in Appendix D) was behind the volunteer desk. I would characterise my time at this post as a form of "moderate participation" (Spradley 1980: 60), because I helped with volunteer duties during busy times or when one or both of the volunteers were absent. When helping out during observations, it was more important for me to "maintain a balance between being an insider and an outsider, between participation and observation" (Spradley 1980:60). This observation post was valuable because it was the location where patients interacted the most with volunteers and staff members, where they received their charts, and put on their heart rate monitors. I participated by pulling patient charts as they arrived, filing patient charts as they left for the day, handing out heart rate monitors to patients before their exercise and cleaning them as they returned them at the end of their session. I also marked patients' names on the attendance sheet and acted as a runner to help inquire about missing patient charts. At exercise sessions I often shadowed a particular staff member, an exercise leader, who kindly agreed for me to observe the new-patient orientations. When patients arrive for their first scheduled day of exercise, it is the duty of the exercise leaders to take them through the program step by step.
Observing the new patients learning the ropes of the program was very valuable because I was 47 able to gauge how new patients approached and reacted to the experience, as well as familiarise myself with the protocol that patients go through in the exercise program. For example I could observe how patients manage on work-out equipment they may never have used before, listen to the kinds of questions they ask and the type of concerns they have, which things they are exposed to on their first day of exercise and so on. The observations also afforded me some background information so that I could compare patient behaviour across time (from early in the program to later when they were more comfortable in their surroundings). Some of the patients I observed on their first day later agreed to participate in my study. In these cases my observations provided valuable background information which then helped to contextualize both later observations as well as the contents of my interviews with these patients. On several occasions, patients asked me questions assuming that I was a staff member,15 and thereby exposed me to the types of questions patients asked the staff at
CWIC.
The second capacity in which I conducted moderate participant observations was at the educational classes. While in the classes, I heard the same information as patients and participated in class exercises, such as reading and comparing food labels as a group. I approached these classes with a "dual purpose" (Spradley 1980:54). I endeavoured to both participate in the class activities and take in the class information in the same way as a patient might while at the same time observing, with a wide analytic lens, the "activities, people and physical aspects of the situation" (Spradley 1980). To do the latter, I made general observations about things such as the layout of the room, the number of people in the classes, and the ratio of men to women. I also paid attention to how patients and staff spoke, and to
151 deflected all questions to staff members, explaining that I was a masters student and not qualified to answer patients' questions. their body language as they sat through (or taught) the classes. I made notes about course content, how instructors taught classes (teaching style) and how patients reacted to the messages/material that they encountered in class.
Finally, I carried out observations at the main CWIC office in three different capacities: 1) doing observations in the main reception area, 2) observing a nurse-patient consult, and 3) observing patients as they underwent a stress-test. The program manager facilitated the opportunities I had to carry out my observations at the CWIC main site. In all three clinic scenarios my observations were passive -1 only described the processes, procedures, interactions between patients and staff, spatial layouts and overall atmosphere.
I recorded my observations and the contents of informal interviews in a small black notebook that I could fit in my back pocket. In the field, I translated observations into jottings
(Emerson et al. 1995) in this small black book. Later, I expanded these jottings into field notes on the computer in a word document. In these expanded field notes I used both descriptive and analytic writing (Emerson et al. 1995) to convey my observations and conversations from the field. The descriptive accounts made up the majority of the text and were an objective (in so far as they could possibly be objective) portrayal of the things I observed as well as the general content of casual conversations I had had. Within this descriptive writing I embedded analytic comments in square brackets right next to that which sparked the analytic thinking.
These analytic memos were, in character, like little "asides" which are "touched off while composing fieldnotes" (Emerson et al. 1995:100). By nesting them within the descriptive text,
I was able to relate memos directly to the data which sparked the idea, as well as keep track of how such analytic asides changed my data collection (i.e. through time) (Emerson et al. 1995). The asides consisted of questions that arose, personal responses, or ideas that appeared to me
as possible analytic categories.
Data Collection - Interviews
Interviews are an important part of ethnographic research as they provide insight into
the thoughts and motivations, i.e. the emic point of view, of those individuals one is studying
(Spradley 1979). I conducted both formal and informal interviews (Bernard 2006:211). For
informal interviewing, I tried to remember as much as possible about conversations I had with
patients, staff members and volunteers when I was observing at the educational and exercise
classes (Bernard 2006). Although I was able to ask questions about the Cardiac Wellness
Program, these interviews had very little structure and control (Bernard 2006). This kind of
interviewing primarily took place with the volunteers when I was helping out or observing
from behind the sign in table, with staff members when I was shadowing them on any given
day or setting, and with patients in casual conversations before or after educational classes, or
at the exercise sessions when they were waiting for their time to exercise. Volunteers shared
information about their experiences in the program, why they choose to volunteer, and their
own interpretations of what the current patients in the program may be experiencing based on
their own history and experiences. Staff explained how the program was set up, different staff
roles, and provided insights into the different ways that patients approach the program.
Informal interviews with patients were more rare, and occurred mainly in the small gaps
between their structured time - either in their first day of exercise orientation or before or after
educational classes.
The primary source of data for my research, apart from my observation fieldnotes, was
25 semi-structured interviews that I conducted with patients, staff, and volunteers. In semi- 50 structured interviews, the researcher uses an interview guide which contains topic areas to address. The interviews are best used in situations where researchers can only interview study participants once (as in the case of my research project) (Bernard 2006). I made use of an interview guide that included topics that I wanted to touch on in each of the interviews
(Bernard 2006). These topics included: their experiences in the program, the social interactions they had with other patients, the story of their heart event and/or referral to
CWIC, stress, and what the meaning of the program was to them. At the start of each interview I collected basic demographic information so that I could describe my study population.
I used both descriptive and contrast questions (Spradley 1979). The types of descriptive questions I used were 'grand-tour', 'mini-tour', and 'experience questions'
(Spradley 1979). As a general category, descriptive questions "aim to elicit a large sample of utterances in the informants native language" (Spradley 1979:85). Because my research focus was patient experiences in the Cardiac Wellness Program, I began each interview by asking patients to tell me about their experiences in the program. I asked this in a grand tour format, which allowed for a broad range of answers and descriptions from participants: "Tell me about your experiences in the cardiac rehabilitation program." From the answers participants provided to this question I employed mini-tour questions which deal with a "smaller unit of experience" (Spradley 1979:88). I would ask participants to elaborate on something they brought up in answering the first question, for example: "You mentioned that the program helped to build your confidence, can you tell how the program helped you with that?" I made an effort to keep the interviews open-ended to the degree to which each participant's unique approach to and interpretation of the program would emerge. 51
Although the majority of structured questions were the descriptive type, I also made use of contrast questions (Spradley 1979). The contrast principle suggests that you can understand the meaning of something by understanding how it is different from something else (Spradley 1979:157). In trying to understand the meaning of the Cardiac Wellness
Program to the participants, I would ask them about how the program was similar to or different from other experiences in the hospital or other experiences they had had within the health care system.
I interviewed patients in three different locations. I interviewed at Cardel Place on-site, at a sitting area beside the Jugo Juice bar down a large hall from the exercise area. This location was ideal in that patients would often schedule their interviews with me either directly before or after their exercise time. Interviewing at a place in close proximity to the exercise class did not entail too much additional time out of the patients' schedule. The near proximity to the exercise had a further benefit in that it meant we were close to CWIC staff in case the patients experienced any health problems during the interviews. The downside of this interview venue was that it was rather noisy at times as a result of juice blenders, and families with young children who ran around, yelling and crying in what, during some interviews, seemed like an echo chamber. Students from the adjacent high school flooded in around noon, which made it difficult to concentrate, and sometimes disrupted the flow of the interviews. I interviewed patients I recruited from WHC and the exercise classes at the counselling room at the CWIC main site. This location was ideal because patients knew where the office was, had been there before, there was free parking, and doctors and nurses were just down the hall in case any participants had trouble. The room also had suitable seating, tissue and a clock. The setting was quiet and I feel that I was able to get better interviews here than at the Cardel 52
Place interview site. Finally, I conducted three interviews over Skype on my computer at
home. Skype offered the benefit of conducting the phone interview through the speakers on
my computer and recording it with the recording device I used for in-person interviews.
Telephone interviews were the best option in cases where patients lived out of town or had to
work during the day.
I audio-recorded the interviews and transcribed the recordings using ExpressScribe
software into a word document on my computer. I printed the interview transcripts and
imported them in electronic form into Atlas.Ti for analysis.
Analysis
Creswell (2007) suggests that data management is the first loop in the data analysis
'spiral' (p. 151). One possible technique is to construct a "face sheet" in which "all of the data
from a particular case... is summarized in a systematic and theoretically relevant way" (Keifer
2007:142). Creswell (2007) also suggests that a good first step in analysis is to get a sense of
the data and each interview as a whole by reading it over several times before breaking it
down into more detailed analysis (p. 150). I began my analysis by reading over the data set in
its entirety, making high-level memos in the margins as I went along. In order to capture the
larger view of the data I created face-sheets for each of the patient and volunteer interviews I
conducted after I had read over the transcripts. For each face-sheet I included demographic
and biographical information, a short summary of the patient's heart condition, experience in
health care regarding his or her heart, and the major themes that emerged from an initial
reading of the transcript regarding what was most meaningful to him or her about participating
in the program (see Appendix E). My goal for compiling the face sheets was to create a bird's 53 eye view of each interview transcript which would help in comparing and contrasting each
interview as a separate case.
Once I had completed this overview of my data I drew from Emerson et al. 's (1995)
texts on how to conduct analysis of ethnographic fieldnote data and Ryan and Bernard's
(2003) discussion of themes to analyse my fieldnotes. I began analysis with my fieldnotes
rather than the interview transcripts because I wanted to have a sense of the overall structure
and processes of the Cardiac Wellness Program. From the broader context of observation and
analysis, I circled in upon the interview transcripts. I coded my fieldnote data using line-by-
line open coding (Emerson et al. 1995). My approach was to "identify and formulate any and
all ideas, themes, or issues ..., no matter how varied and disparate" (Emerson et al. 1995:143).
Within the texts I identified and marked off sections that represented informal interviews and
the views and opinions of staff or volunteers. I wrote analytic memos as ideas popped up in
my mind. During coding, I broke down codes I had created into sub-codes. For example for
educational class observations one of the codes was "Ed.Content", which referred to the type
of material covered in the classes. This code acted as the primary classification of the data, to
which I would add a second level in order to further break it down. An example of what this
looked like is as follows: Ed. Content: mechanism for bodily damage. The method both
categorized and analytically coded my data - it classified the data chunk as text which
revealed the content of the educational classes, as well as labelled according to the nature of
that material, this case the material covered in the class had to do with describing
physiological processes which occur in the body. During coding and categorizing of fieldnote
data I wrote analytic memos in the margins to capture emergent ideas and connections
(Emerson et al. 2002). 54
The third step in my analysis was to analyse the interview transcripts. I began with sorting my data using processing techniques (Ryan and Bernard 2003). Processing techniques focus on sorting data either manually or by using computer software programs (Ryan and
Bernard 2003). To sort my data I used the qualitative analysis software Atias.Ti. I coded each interview transcript in Atlas.Ti in two ways simultaneously -1 categorized the data into different "major organizing ideas" (Creswell 2007:151), classifying large chunks of data as one category, and then within these chunks I did a closer, line-by-line analysis labelling smaller chunks of data with codes. The organizing categories stemmed from the structure of the interviews themselves as well as from my initial readings and fieldnote coding, and served to "winnow" the data, bringing it down into manageable parts to work with (Creswell
2007:150). For example, the segment of each interview transcript where participants described the heart event that led to their referral to CWIC I categorized as "Heart Event Story." Other examples of categorizations that I created during this initial coding exercise were "Patient
Approach," "Patient Type," "Relating to Program Experience," and so on. The analytic codes on the other hand related more to the actual analysis of the content of the interviews on a line- by-line basis, and, similar to the approach I took to coding my fieldnotes, I did not limit the number of "ideas, themes or issues" (Emmerson et al. 2002). Creswell (2007) states that using qualitative software programs provides the benefit of making it very easy to cut and sort data according to codes and categories. For the purposes of categorizing and conducting a preliminary analysis using coding, Atias.Ti proved to be a very valuable tool; after I had completed this initial step, I was able to create "code reports" where the software program would compile all of the quotes for a single code (in Atias.Ti "codes" included both the organizing categories and analytic codes mentioned above, i.e. they were both technically 55
"codes" within the software program - so a "code report" could actually be a category report depending on which code I chose) and output them into a text file which I then transferred into
Microsoft Word. In these code reports, the Atlas.Ti program labels each quotation as to which
interview document it came from which made it very easy for tracking purposes and attributing quotes to the proper participant. In addition, because the program allows the
researcher to code the same chunk of data multiple times (which allowed me to "categorize"
and "code" simultaneously), each quote would also have attached to it a list of all the other
codes (and any analytic memos) put to that particular segment. It looked like the following:
P 3: Patient Interview #3.doc - 3:18 [I: Can you tell me more about..] (35:37) Codes: [Body- what can it do?][Pt-Pt Interactions] [Relating to the Program experience]
I: Can you tell me more about why you found the interaction with others important?
P: Well, they have their stories of course, people get there and they say well what happened to you? Well I was, I had a heart attack and this and that, and what about you? Well I was on the cruise, and it's it's very supportive kind of environment, and nice to know how other people have handled it, you know?
Using these code reports, I compiled the data from several of the categories I created
(for e.g. Relating to Program Experience, or Feelings) for further analysis. Although using
computer programs can save time cutting and sorting data, a disadvantage is that it can "put a
machine between the researcher and the actual data. This causes an uncomfortable distance
between the researcher and his or her data" (Creswell 2007:165). In my experience, it was
more difficult for me to deeply engage with the data on the computer - my ideas and
connection to the data was better when I was reading it on paper, and marking it up with my
pencils and pens. I therefore printed out the code reports and began coding them a second time 56 using scrutiny techniques (Ryan and Bernard 2003) to search for themes. Scrutiny techniques involve "pawing through texts" - reading, re-reading and marking up with highlighters (hence the importance for me to do this part on paper) all the while searching for repetitions, native categories, and the metaphors and analogies of themes as they appear in the text. I circled in pencil words that appeared repetitiously within patient answers. I highlighted in different colors statements made by participants that related to larger overarching ideas that emerged from my analytic memo-writing, and on a separate sheet of paper I mapped out the themes that emerged, circling them, listing their components (often these components were the codes
I had come up with in Atlas.Ti and in my line-by-line analysis of fieldnotes) and contemplating how they may be connected by using arrows. While conducting the scrutiny techniques, I began writing "integrative memos," which "elaborate ideas and begin to link or tie codes and bits of data together" (Emerson et al. 2003: 162). Integrative memos involve writing, either for oneself or an audience in mind, bits and pieces to describe the link between different parts of the data relating to the same idea (Emerson et al. 2003). Writing memos proved helpful for me in this regard, and it was from linking things together that the overarching thematic material started to materialize. I plotted the frequency of the expressions per participant into charts (see Appendix F). From these codes I developed four themes and two meta-themes.
Finally, the last scrutiny technique I employed was to consider how the data relate to larger theoretical questions within social sciences. Ryan and Bernard call it looking for
"theory related material" (2003:93). This technique speaks to a balance the researcher must strike within herself and to the approach she chooses. Although certain theoretical concepts were in the back of my mind during the analysis, I made an effort to approach the data without 57 a prior theoretical framework; I chose to do the line-by-line coding analysis technique
(reminiscent of, but not exactly, a grounded theory approach (Emerson et al. 2003)) so that my findings emerged out of the data as much as they possibly could. It was only once I had sketched out a potential outline of themes that I began to consider possible theories to consult before re-approaching the data for a final time. 58
CHAPTER 3 - RESULTS
Study Participants
My study participants (N=25) included 14 male patients, three female patients, three volunteers and five staff members. Of the 17 patients I interviewed, the youngest was 46 years old and the oldest was 76 years old. The majority of patients were between the ages of 50-65
(N=10). The patient participants were at different points in the timeline of their exercise program. Five participants were in weeks 1-3, eight participants were in weeks 7-9, and four participants had finished all twelve weeks of exercise program. The majority of my study sample was made up of male patients (N=14). Female patients (N=3) were more difficult to recruit. Several female patients took the information flyers and expressed interest in participating, however they never contacted me. See Appendix G for a breakdown of the characteristics of my study participants. In the following section I have grouped the current
CWIC patients and the volunteers together to make up my group of study participants
(N=20).161 have kept the staff interviews as a separate group of participants.
1. Questions and Uncertainty
In this section I discuss two themes - Doing and Puzzling. The theme Doing describes the way participants talked about their concerns regarding what they can physically do, both in the context of cardiac rehab exercise programs and in their lives at large. The theme Piloting reveals how participants look through their biographies and to others in the program as well as the program staff for information that they can use to piece together an explanation for their heart problem.
161 have included the volunteers in with the patient sample. As past participants, the volunteers had had more time to reflect on the program which endowed my analysis with a broader perspective. 59
Doing
Nearly all of my study participants (N= 19/20) reflected upon what they could do following their heart event, heart surgery or diagnosis of CAD. "Doing" in the context of this theme has many different meanings. Patients talked about doing in terms of their physical capabilities and learning bodily limits (doing action); being able to carry out the physical demands of the CWIC exercise program (doing rehab); the messages they received from health care providers about what to do (doing right); and being able to do what they used to do; that is, the activities of their life in general (doing life). The majority of expressions for this theme came from interview data (165 expressions total vs. 36 expressions from observation data).
Doing Activities - Returning to a Normal Life
During interviews, many participants (N= 15/20) made reference to activities which, for them, defined a "normal life" such as working, lifting hay bales on the farm, riding mountain bikes in large loops in the mountains, square dancing, or playing music with friends.
Some participants within this group (N=6/15) were concerned about getting back to what they
"used to do." They talked about life activities that were much more physically strenuous than those brought up by the others. For instance, Cam had been a very active person and one of his major concerns following his heart attack was whether or not he could get some semblance of his active life back. He said the program helped him gain confidence and believe that his life would not be changed forever:
That's why I said for me it gave me the confidence that I can do it, that I can keep doing what I used to do. I used to cross country ski seven hours at a time, you know our loop, it's 60kms of cross country skiing. Bike racing where we 'd start at Lake Louise and go to Jasper. [...] And after the heart attack you sort of worry - can I do that again? And this program gives you the confidence and the 60
ability. To actually realize that yeah maybe I can7 do all of that to the full extent, but I can still do a good portion and enjoy it. And not have to worry that I'm going to fall over. Somewhere down the road.
The active nature of Cam's life activities had him questioning how his life would be defined from the moment he had a heart attack. Questioning how his life might change was not such a big issue for Dennis, on the other hand. He was a musician and expressed how he was easily able to return to his regular Tuesday jam sessions with his friends. He, unlike Cam, expressed confidence and satisfaction around the kinds of activities he was able to do in his day-to-day life after his heart attack. His activities, however, were not very physically demanding.
Expressions of this theme in my observation data stemmed from things that were said by participants and volunteers during the formal classes. The question of "What can I do?" was one that I heard on my first day of my fieldwork as I observed one of the welcome sessions. As part of the introduction to the program, a cardiac wellness volunteer I stood up to address potential CWIC clients. The volunteer told the group that after her heart event, she was wondering what she was able to do and explained that the Cardiac Wellness Program was what had helped her to re-build her confidence and return to a normal life. The following is an excerpt from my observation fieldnotes on that day:
The volunteer who was signing the patients in came up to the front and was introduced by the class instructor. She wore a bright red t-shirt that read " Volunteer - We've got the heart." The volunteer said she is ever grateful to CWIC. "Let me encourage you to really go for it." She said the program helped her get her courage back, and that before she was too afraid to drive or be too far from the Foothills Hospital. She enthusiastically told people that she had just been to Hawaii, and the year before that, to London, and that 8 years ago when
17 All CWIC volunteers are past participants of the program. 61
she had had her event she never would have believed that was possible. So the program really helped her get her courage back. She insisted that there IS live after this event, that life does get back to normal.
The question, "What can I do?" as a core aspect of the theme Doing was the fundamental message of this volunteer's welcome spiel. It was also mentioned by all three of the volunteers
I interviewed. Years after they first entered the Cardiac Wellness Program, these volunteers remembered the uncertainty they felt about whether or not their life would ever go back to normal.
Not all of my study participants were uncertain about what they could do physically or in their life activities, but instead retained confidence and trust in their bodies (N=3/20). Two of these three participants did not suffer a heart attack. Instead they had undergone medical screening for government regulation purposes (for employment safety in one case and immigration in the other) whereupon the tests showed an issue with their heart. One of these two patients was Todd, whose yearly medical screening (required for his employment) showed he had myocardial ischemia upon exertion. He demonstrated a confidence level that the majority of patients in my sample did not:
It's almost like a trust thing. You know? Like I have trust that my heart is working fine and that I'm going to be fine, you know? [A] 11 of this stuff is based on the fact that a person has had or is close to having a heart attack, you know? It doesn't cover somebody in my position. Of course she did put the add-in there that you 're going to do what you 're going to do. And so I just kind of smiled to myself andfelt yes that's exactly right.
Todd was not nervous about lifting weights without supervision and input from an expert in the field. He had a high level of confidence and trust in his capacity for physical exertion by virtue of his experience from lifting weights, and perhaps, because he had not suffered a heart event as had others who were more uncertain. Another participant in this category was an 62 individual who had been living with heart disease for 15 years. Rather than an unbroken trust in his body and his hold on life, this participant, named Richard, expressed an attitude toward life that was imbued with acceptance. This approach influenced his ability to spend time being active in the backcountry, often out of the immediate reach of medical help. The following comments show how this was also influenced by the messages of his care providers:
You never know what's around the corner for anybody, eh? You know, you just took your lumps and had the surgery. [,..]And then after the surgery, [my surgeon] says "go out and live." Because we 're wasting your time if you 're not living (laugh). Richard had CABG surgery upon his diagnosis more than ten years prior to our interview and a stent when he began having troubles again a few years later. When he experienced more chest pains in the year of this study, he finally (after a few prior referrals) decided to join the
Cardiac Wellness Program. In that time, Richard had had many years of living with heart disease to become comfortable with being active and living life fully. Richard was unique in my study sample because he was the only patient I interviewed who had been living with heart disease for a number of years (aside from the volunteers). Unlike Cam, who was finding reassurance in the Cardiac Wellness Program that he can "return to a normal life" by physically testing his body's limits on the treadmill, Richard demonstrates a "philosophical" perspective to whether and how he is able to return to a normal life. For the remaining two participants in this group, Ted and Josip, their heart event (MI/PCI in Ted's case and
CAD/CABG surgery in Josip's) was instead a turning point in their lives where they felt they were able to do more than ever before. Josip was no longer limited by symptoms of chest pain and shortness of breath when he went walking with his friends, and Ted, after having a stent inserted, felt like he had more energy and more energy than he had had for a long time: 63
I: And so had you been worried after your heart attack about the things that you would be able to get out and do at all? P: No. You know what? I have been waiting for the opportunity to get out and do this! When they did my stent I felt so good and so wide awake. Like an OWL. Could see in the dark! No I felt really - just that fast! And Ifelt that good ever since. You know? And then, when I had my stress test the doctor said to me so what are you doing here? Because my test showed me that I didn 't have heart attack. But I had a heart attack. I've got pictures of it. So. Yeah! I can't wait for the next one! Like cause I, my pulse rate, as soon as I did anything was 135, eh? Now I have a hard time getting it over 95. So I am getting there. I: So before this happened did you feel restricted? Like is that what you are saying? P: Yeah, Ifelt draggy and... you know not a lot of lift. But now. I just can't wait to get going.
Ted's remarks show how heart events and their associated interventions can increase an individual's confidence and readiness to exercise and/or be active. Ted and Josip felt tired, draggy and out of breath as a result of one or more blocked arteries in their heart. Doing, in this respect encompasses changes in confidence that participants portrayed from a mixture of angles. Some participants felt less confident, some felt more energized and confident, and others maintained a constant level of trust and confidence in their body.
Physical Limits - Doing Rehabilitation
A second aspect to the Doing theme reflects participants' uncertainty regarding their physical capabilities and nervousness about exercising on a treadmill at cardiac rehab. Half of my study participants (N=10/20) talked about not knowing what they could do physically as they entered the cardiac rehabilitation program. Different things fuelled their apprehension as they entered the program. One participant had no prior experience using a treadmill. Another three participants had limited mobility because of acute CAD symptoms or an intense period of hospitalization and sickness. Five participants talked about how the messages from health 64 care providers they had received prior to attending the program about not exerting themselves fuelled their sense of concern about their physical limits and what they should do physically.
Cautionary messages from care givers in hospital made them unsure about how much to exert themselves before they entered the program. Christopher did not suffer a heart attack but experienced severe angina before he decided to go to the hospital (on the advice of his wife who is a health care professional) where he was diagnosed with severe CAD. He shared how the time between his diagnosis and the cardiac rehabilitation program left him feeling unclear of what kinds of activities would be appropriate and safe for him to do:
I was in the hospital at the end of May so it wasn't until September [that I started into the program] and I was pretty much told not to exert myself too much. Until I could get into my stress test and so there was a three month period there where it was what do I do? What don't I do? There was, there was just so much unknown. Is this going to kill me in the next few weeks yet or not you know and (chuckle). And what I really found surprising was getting back into the vehicle and driving was really tough. And I didn't for about 5 days. And [my wife] just said ok we 're going for a drive and you are driving. So we did. And I felt quite apprehensive about it, until we got to [name of town] and I rested a little bit there.
Christopher struggled with the unknowns surrounding his heart disease. Though he had been to the hospital and started the ball rolling with treatment, he was far from confident that he was in safe territory. These feelings, combined with the messages he received while in the hospital, constituted his questions about what he could do.
Another patient, Cam, approached his stress test with trepidation because of messages he had received upon discharge from hospital about what and how much he should do:
I: So how they explained [the stress test], it helped you from being worried, what were you worried about?
Cam: Well it's just the fact that you just had the heart attack, you are not sure how much - they are telling you, make sure you 65
don't do too much, make sure you keep it down, you know just walk lightly, do a five minutes warm up, five minute cool down then stop. So you're... getting on a treadmill... ? (chuckle). Treadmill exercise was a source of unease for these patients and a site of learning.
Three of the above patients who were initially concerned about the exercise component of the program shared that exercising on the treadmill taught them their physical limits. The exercise program at CWIC allowed some participants to find, test and push the limits of their body
(N=9/20). These participants referred to speed, level of incline and time spent exercising
(within the parameters of the specific exercise routine) on the treadmill in particular as a way of finding their limits. Three of these nine patients were probably the "sickest" of my sample - i.e. they were the most limited because of CAD, a surgery ordeal and long hospitalization, or co-morbid conditions such as Parkinson's disease. Those with limited physical abilities when they entered the program could, through engaged participation, observe their improving fitness level and with it, their ability to do things. Christopher mentioned that health care providers in hospital had told him to take it easy. This advice made sense to him because he would become aware of chest pains and discomfort if he exerted himself to a certain level. He noticed, however, throughout his time in the program, that his body's physical capabilities were improving:
I'd go out for a short walk and initially I couldn 7 even make it around the block. It was, you know I was just so short of breath all the time. So I've come a long way from that and after about 6 weeks of being in the exercise program here I just almost instantly one day here, noticed a change. It was like my body just took a step up. So going from a level 10 to a level 13 or 14 and now I 'm working on the bike. So that's been good.
The exercise program provided Christopher with a measuring stick of sorts with which he could remark the improvements he was making in regards to how much he could exert himself without triggering symptoms. 66
The remaining six participants in this group, though not so limited or concerned at the start of the program, also talked about being able to "find a limit" that worked for them and which helped them to define what they could do not only in the context of exercise in the
Cardiac Wellness Program, but in their lives in general. Cam used the exercise session to push his limits and used the information he gained from this as a way to know how much he could safely exert himself in his daily life.
I'm looking forward to doing the exercise, cause I'm always looking forward to stepping a little past the boundary and going a little further each time. Increasing the length of time, increasing my heart rate slowly, increasing the work load. And just going that much further. So that I feel comfortable doing everything that I used to do.
The program taught Cam the limits of his body, and gave him the opportunity to increase his level of exertion during the exercise sessions. He gained confidence that he would be able to lead an active life and not worry that physical exertion would make him "fall over" and die, that he could resume normal life activities, as discussed above. In this way the program helped
Cam immensely because he gained a sense, a definition, of what his life was going to look like from this point forward:
The fact that you can actually do an hour of exercise, work up a sweat, get the heart rate up there, and all's well. So from that I can take it into my regular life, my work life and my home life and know that I can go on. I will have a life after the fact. [...JSo, to me it was basically yes you are getting in shape, it's giving you the ah, what your body needs, but it's giving you the confidence to go on. And knowing that you can have a normal life afterwards.
As I have shown, the theme doing reflects uncertainty on the part of many participants who were unsure of their bodies and what level of exertion or types of activities were safe for them to do. This theme also shows that these feelings were affected by the acuity of their heart 67 event and messages from health care providers. The questions some participants had in this regard extended beyond their physical body into the character of their lives at large. Those who placed more trust in their bodies had either never experienced a heart attack (medical screening) or had lived with the heart disease long enough to develop if not a renewed confidence in their body, a personal philosophy or approach to living with heart disease that was not especially limiting.
Puzzling
The theme Puzzling describes how patient participants endeavoured to piece together explanations for their heart condition and define their situation. Participants pieced together explanations by searching around in their lives for probable causes or risk factors, which they weighed against the information they received from health care providers in the form of test results or clinical expertise. Participants characterized or defined their situation by looking outward and judging their own situation in comparison to others'. Simultaneously, participants puzzled over what types of changes they could possibly make in their lives to improve their heart and overall health. The expressions in my data for this theme came from both observations (72 expressions) and interviews (198 expressions).
Piecing Together Explanations: Searching for Causal Factors
All study participants reflected on how they ended up having an issue with their heart.
Expressions of this theme included both what participants felt they did right: "I credit my swimming for getting me through this" (Maurice), as well as how certain past behaviours may have contributed to the problem: "I've always been physically active. It was just these last few years with the stress of my mom and running over there, I just let everything go a little bit, which probably contributed [...] to the heart attack" (Cam). I observed individuals puzzling at 68 various points along the timeline of their participation in the program. During the first
Welcome Session, a woman who was not part of my study questioned the cause of her heart attack aloud in the class. She asked the registered dietician who was running the class why she should have had a heart attack because she was nowhere near the age of when women generally develop heart disease, and no-one in her family had heart disease. Two individuals, whom I interviewed after they had completed the 12-week exercise program, were still considering what causal factors played in to their heart attack (both in this case had had a heart attack).
Some of my participants, however, puzzled over their situation more than others (N=
6/20). These particular participants did not perceive themselves as being "typical" heart patients. Indeed, those in this group were on the younger side of my study sample and not overweight (average BMI of 24.2 and average age of 54). Lewis was perplexed by how he ended up in a cardiac rehabilitation program:
[Silence for a while]. I guess the other general observation coming in to the program, ... [is that it's] based on the presumption that you've had a lifestyle that's offside, so you are overweight, you have too much salt or fast food or something, you smoke, you don't exercise, you - these ten parameters, whatever maybe only five. And so they are trying to reduce or move your habits into some other, you know some of the set of habits. And I didn't feel that I had those habits when I came in. And yet I'm still in the program. So. 1 must have had some of the habits but not all of them.
Lewis was puzzled about how he ended up having a heart attack and needing to be in a cardiac rehabilitation program because he did not perceive himself as having the necessary contributing factors. At the same time, however, he admits that there must have been some contributing factors to his situation that resulted in his current circumstance, even though he was not exactly sure what those were. In the context of cardiac rehabilitation, which addresses 69 the modifiable risk factors for heart disease, Lewis revealed that it made him question which factors pertained to him in particular. Later on, he identified heredity and stress as causal factors:
I mean you look back at family history, and we're dragging probably 150 years of negative family history with heart problems.All the males you know have died anywhere between the age of 50 and 70 in the last 150 years. So it's not really a question of what it's more a question of when. [...] I think my two were probably, 150 years worth of negative heredity, and stress. Were probably my two.
Two others in this group of six puzzlers did not consider themselves "typical" heart patients or in the same group as the others because they did not have CAD. Instead, Victoria suffered a heart attack because of issues with her heart valves. She recounted the explanation that her doctor gave as she pieced things together in our interview:
And myself too, like I don't think my heart attack was quite the same as most peoples'. I mean 1 don't think mine was because of my diet. Because I do eat really good. And the cardiologist said that the mitral valve, the only thing that causes it is rheumatic fever. And I've never had rheumatic fever to my knowledge. And he said well you definitely would have but he says maybe it was so mild that you didn 't know.
Victoria contemplated her diet and the explanation given to her by her cardiologist about what caused her heart attack. However, not all pieces fell into place for her because she did not remember having rheumatic fever, which her doctor suggested was the cause. Later on in the interview Victoria jokingly suggested that it was actually the stress of doing house renovations that caused her heart attack:
I've been renovating my house, putting new flooring in and stuff so yeah I did get a lot of exercise and to me that was maybe what caused my heart attack! Victoria's statement regarding the possible cause of her heart attack also shows how making sense of causal factors for many participants incorporated not only the information they received from the health care providers but also their own recollections of their past in addition to their own ideas of what may have been the ultimate trigger.
The information patients received from health care providers about causal factors was worked into how they puzzled out their situation. I observed this in interviews with my study participants as well as in the educational classes through comments made by other CWIC patients. In the classes, I observed patients asking for more information about certain risk factors and volunteering information about their own particular situation. They consulted with the CWIC staff member leading the class to try and piece together what exactly contributed to their heart event. In the Risk Factor Review Class, a registered nurse (RN) described the modifiable risk factors for heart disease and their mechanisms for action. At the beginning of the class, patients received a piece of paper with the results of their last blood test, which would include a number value for the amount of triglycerides (or fat) in their blood. During the discussion of the risk factors the RN displayed the normal range values for things such as types of cholesterol in the blood in a PowerPoint slide. Patients consulted the piece of paper
with the contents of their blood on it and compared it with the normal range displayed on the screen. Again, some of the class participants puzzled over their situation and asked the nurse
questions. One man fell back on genetics as the answer because his cholesterol levels were
normal before he had a heart attack: "My cholesterol was normal but I still had a heart attack,
so it was genetics. Does this mean I should tell my kids to get tested?" Another woman
questioned the nurse about why her mother should have had a heart attack when her
triglyceride levels were within the normal range. This scenario, as well as the scenario I 71 described earlier about a woman in the Welcome Session who challenged the dietician to provide her with an answer to why she had a heart attack without being able to pinpoint any cause, shows the difficult position that CWIC staff face in having to account for patients' heart events when they themselves can find no clear cause. Without the benefit of the patients' history and chart information this proved a difficult task to do on the spot. In both scenarios the staff member admitted to being unable to answer the patient's question fully at that time.
What they could do, however, was point the patients toward the various resources that provided support and information offered by CWIC.
The CWIC physician I interviewed addressed the issue of understanding causal factors for heart disease. He suggests that the causal "equation" for atherosclerosis is often misunderstood. In this equation the "drivers" such as diabetes, hypertension, dyslipidemia and smoking are on one side and "vascular susceptibility" is on the other. He made the point that what is considered a "normal" range is not necessarily normal, rather it is usual. "Normal" then, lies on a continuous scale and will differ for people with different levels of susceptibility. "Normal" will also vary according to the age and geographic location of the population:
So you've got vascular susceptibility, ok and then you've got the drivers for atherosclerosis. Right. And then mixed in to that of course that people say well you know my blood pressure was normal. My cholesterol was normal, I don7 have diabetes. And when you go into the epidemiologic literature and you look at what is normal, ok, normal is a blood pressure of less than 120. Normal is a cholesterol of less than 4.65, ok. Normal is not having diabetes. Normal is getting a modicum of exercise, ok well as soon as you say that you have eliminated 95% of the North American population, ok and if you take a thousand people and you do their blood pressures and the mean blood pressure is you know, 150/95, do you go well that's normal? Ok and if you went to a middle aged population in North America you'd probably find the mean blood pressure somewhere around 72
145/90. And then you go well that's normal! Which we know is not the case. A lot of the norms were established in 18-25 year olds. And so yeah so we say the average cholesterol level is 5. So that's the normal. And you go well the Amazon Basin, African Veldt, you know 2.5 maybe less is their total cholesterol. So there's 'usual' and then there's 'normal' ok So nobody in Western society is 'normal' in terms of true physiologic normal. No, no. It's usual. It's usual in a population or in a society where virtually everybody has atherosclerosis. So it's that exposure, susceptibility,and what's actually normal.
CWIC patients who were considering the risk factors that contributed to their heart attack made reference to their own values as well as to what staff indicated to them as
"normal." These values and scale along with preconceived notions of what makes up a typical heart patient influenced how study participants and other CWIC patients I observed made sense of their heart situation. At the same time as describing the problem inherent in the concept of a "normal range" as a basis for the potential causal factors for heart disease, the physician illustrated that there were instances where it was more difficult to pinpoint causes
(aside from extreme susceptibility) in cases where individuals displayed no risk factors. In these cases, the physician suggests, the focus changes - it becomes one of figuring out how to give the patient more years to live, rather than explain what happened to them:
So rather than saying well you know it's God's will or it's Voodoo or whatever it is, you know ah, you go ... you've got the disease, you know how do we look at you and say how are we going to get you another 20 or 30 years? And most of the time that's making their drivers of atherosclerosis abnormally low. I mean I get doc's calling me all the time and saying the patients LDL is 1. You know, that's too low. I'm going... yeah no I was hoping for somewhere around 0.8. Because they had their heart attack when their LDL was 2.1 ok.
The means to providing a patient with more years to live is to adapt the scale of
"normal" and adjust the patients levels (using medication) accordingly. As these comments 73 show, the practices of the cardiac rehabilitation clinic shift according to individual cases. The equation is not the same for every person, and thus interventions can vary with individuals.
Eight of the twenty participants I interviewed referenced how test results and messages from professionals became pieces of the puzzle they were now putting together. For two of these participants, having a heart attack had come as a surprise because they had undergone a stress test a few months prior and were told their chance of having any kind of heart problem was very low. Bruce had asked to have a stress test because he wanted to know what shape his heart was in as he aged:
I went for a heart stress test, and I scored extremely high-1 was in the 93% rate for my age. As far as the ECG was concerned so. So it did actually kind of surprise me when four months later I found myself having a heart attack I remember one of the surgeons that / talked to in the hospital I mentioned that, and he said well, it does go to show you about the efficiency of these tests and how they really don't always give you the right picture.
Kyle's cardiologist was not able to give Kyle a clear answer as to the cause of his heart attack.
He suggested that Kyle get comfortable with the fact that he may never understand what happened. Kyle went through the events of the days leading up to his heart attack and wondered if it was the coffee he drank, which he never usually does, or the fact that he switched from regular coke to diet coke that year. He also mentioned that he had suffered two separated shoulders from playing hockey and that possibly a blood clot had given way. Kyle also wondered if the stress he endured through a difficult divorce was the culprit. He ruled himself out of the known risk factors for heart disease and was left searching for alternatives.
Of all of my study participants, he spoke the most about being perplexed as to the cause of his heart attack:
I'm a different type of student. I, you know for 20 years I run 20 or 30 miles a week, I eat well, I drink Metamucil every day I 74
drank green tea before it was fashionable I don't smoke, there's no family history, there's no high blood pressure, or - what is slightly elevated was my blood pressure after my divorce. But not really the cardiologist said and he said the cholesterol levels were in the high end of the normal range. So they have no idea what happened to me. [...]!'ve never been in better shape so I'm slightly confused cause you know I, and definitely I was stressed. No doubt about it. [...] Um you know I don't know. I still... you know... I don't know. I still... cause I had separated my shoulder a month before the heart attack and I still wonder - [...]. And so a lot of things happened that year you know I went through a lot of changes in my life and I wonder - you just wonder! I switched from regular coke to diet coke that year. I know it sounds stupid . I started to lift weights. There are so many different things I did in that year I just can 7 put my finger on anything - on any one thing.
The above comments show that piecing together explanations for Kyle and others involved a level of conjecture on their part and, at times, on the part of the health care providers who helped them. In Kyle's case, the lack of an explanation from health care providers amplified his search for answers.
Some participants talked about stress as a possible cause when they had ruled out most others. Although roughly half of my sample related stress in some way as a causal factor to their heart problem (N=l 1/20), only four of these eleven study participants emphasized stress as a probable cause for their heart problem. These participants were on the younger side of my sample (average age between them being 54 with the oldest being 61 and the youngest being
46) and were among the most highly educated. All four have university degrees, two of which are advanced master's degrees. Marion was confident that stress played into her heart attack, which was caused by a dissection, not from atherosclerosis. Her father had suffered an aortal dissection years ago, an event which had bearing on how she now understood her own:
But my sister, actually when I called my family to tell them you know that I had had a heart attack, my sister said that she clearly remembers the guys down at County saying that 75
[their dad's dissection] was hereditary. My understanding is that it tends to be related to stress. Not diet. So much. But in this case it wouldn't make a difference. I mean I do - I eat really well. We are really careful in our house anyway. So but stress is certainly [a factor].
Marion considered herself a good eater and perceived stress as what most likely led to her heart attack. Later on in our interview she talked about the stresses of her work where she is the "go-to" person for a large pool of young students (she works in the education field).
Participating in the Cardiac Wellness Program allowed Marion to take a time-out where she could figure out how to make changes in her life in order to reduce the level of responsibility she felt toward a large number of people:
And I feel like being a part of the cardiac wellness has given me the excuse to ask for the time to make sure that I've changed... no. That I've tried to build a routine where my physical and mental health is important and I've had the time to convince myself that saying no to things at work is ok. That I don't have to solve all the problems, I don't have to be everything to everyone.
The three others in this group also fell back on stress as a major cause in their heart disease.
Patrick mentioned that he had huge levels of stress and admitted to being depressed. He was in the first three weeks of the program and was newly pondering his situation. The first class he had attended was the Stress Management series and the topic of stress pervaded our interview. Lewis and Kyle, on the other hand, simply pinpointed sources of stress in their lives
(a divorce for Kyle and "un-forced errors" for Lewis) as possible origins for their heart attack.
Seven participants agreed that it made sense as a causal factor to their situation only when I asked, but did not volunteer stress as a cause on their own. Once prompted, however, these individuals told stories of difficult issues they dealt with in their lives such as losing loved ones, shouldering powerful feelings of responsibility or withstanding pressure within 76 their career and work environment. Those who told these stories did not speak or relate to metaphors or concepts of their heart. For example, Ted said the stress affected him
"mentally." He vividly remembers an armed stand-off between the police authorities and one of his co-workers who he considered to be like a son:
I lost my mom and dad in the same year. And it was a little hard. But nowhere near as hard as (clears throat) a friend of mine that worked at the plant in [name of town]. Like he figured I was more of a dad to him than his dad, eh? And he had a stand-off with the [police]. Rifles, the whole bit. And he called me and he says I'm in trouble. He says can you come out? And so I drove out there and the cop stopped me a quarter mile from his place, eh? And it took about 3 hours or so to talk him out of it. He was on the porch of his house with these rifles and he was pointing them at the [police]and they are hiding behind my truck and I'm on the cell phone with him and. That was hard. I suffered mentally from that I would say... a good month and a half? Like it was weighing on me all the time. [...[Andyou know there's lots of times when I'm sitting on the computer and that and I start thinking about him, eh? That will always be there I think When I asked Ted whether or not he thought stress played a role in his heart attack, he said that it made sense and that events such as loss or other stressful events can weigh hard on an individual, as he demonstrated with the above story, however he did not make a direct connection between what he experiences when he recalls the event to his heart attack.
In sum, all of my study participants reflected on where they felt their heart problems originated. Some puzzled over this more than others. Those who saw no problems with their weight or their diet fell back on heredity and stress as the most likely culprits in leading them to heart problems. Those who talked of stress did not use metaphors of the heart in how they perceived how it affected their physical health; they related it to mental or other physical manifestations rather than being directly related to their heart. 77
Comparing to Others
The cardiac rehabilitation program was a setting wherein heart patients could converse with other heart patients and get a sense of how sick they were compared to others. Hearing others' stories of symptoms, events, type of intervention and ways of coping with a heart problem was a way for some participants (N= 13/20)18 to understand and shape meaning around the nature of their own heart health and how they might change. As one volunteer,
Irene, said:
But you know to be quite honest I don't know a lot of people who have had heart attacks. So I really didn't know what to expect. You know. How sick I was or how - all I know is that when I came out of there I was a very tired lady.
Without seeing others who had had a heart event,19 Irene admits that she had no way of knowing just how sick she was.
Certain participants viewed their situation as being quite different from that of others in the program (N=8/13). These patients considered themselves as "anomalies" or different from everybody else. They set themselves apart either because they did not believe they had the classic risk factors for heart disease, because their heart issue was not one of CAD (valve surgery patients for example) or because they had had a more invasive intervention than most others in the program. Many of the participants in this group were also in the group of
"puzzlers" (N=6/20) above, however not all of the patients in this group who perceived themselves as non-typical heart patients were as concerned about finding causal factors for their situation. Although Todd had diabetes and cardiac ischemia upon exertion he considered
18 Table 2. in Appendix F shows N=14, however this is because one participant said that being around other heart patients was not important to him when I asked.
19 "Heart event" was an emic term used by staff and adopted by (some) patients and volunteers. It was a useful term because it could refer to a heart attack or diagnosis or even CABG surgery. It was inclusive of all possible events which ultimately landed patients in the Cardiac Wellness Program. 78 himself to be in a different situation from others at CWIC because he had not had a heart attack. Todd had joined the program at the advice of his cardiologist because he was scheduled to have CABG surgery in several months. He did not have severe CAD or limiting symptoms, but had been told that he had cardiac ischemia through routine medical screening
(as mentioned above). For these reasons, he categorized himself as being different from the other patients: "I'm on the other side of the coin. Most people have had a heart operation or have a heart condition or whatever." This comment shows that even though a medical test had shown that Todd has restricted blood flow to his heart when he is active, and that in a few short months he would be undergoing major heart surgery, he does not consider himself to be someone with a heart condition. Todd displayed two of the major risk-factors for heart disease; he was technically obese (he had the second-highest BMI of all my study participants20) and had diabetes. Despite this, he felt that he was unlike the other Cardiac
Wellness Program participants because he had not suffered a heart "event" or any symptoms.
Not having a heart event or experiencing symptoms factored in to how Todd perceived himself relative to the other heart patients in the program. On paper, Todd could be conceived of as a typical CAD patient, however he showed confidence in his body that others I interviewed did not. Josip set himself apart from the others because of the invasive nature of his heart surgery:
And when I came in for a couple of times I wasn't sure really how to take everybody. Everybody had a different opinion. Most of them had a heart attack Well I didn't had a heart attack. And some of them only had stent put in, you know. So that's not even close. I had mine cut open. There's only two other guys that had had it open, you know.
20 Todd had a BMI of 33 kg/m2 which is in the low end of the "obese" range. 79
How Josip reacted to the program and the others in it was dependent on, in part, how he judged his situation in relation to others'. Though Josip eventually became one of the finest advocates for the program, the statement above reveals his initial trepidation about being different from others.
In contrast, five other participants who made comparisons with others said they found it useful to see that other people were in a similar situation (N=5/20). The comparisons these participants made were multilayered, however, because although they talked about feeling reassured that they were not alone in their circumstances, they simultaneously distinguished themselves from others. Patrick talks about how conversing with a fellow heart patient in the stress management class left him feeling reassured; he was relieved to find that he was not alone in how he felt even if others he encountered differed in the scope and depth of their feelings:
I talked to some of them at the stress workshop and heard you know I was talking to one lady and she said she'd had many of the same feelings just not to the depth that I had had them. So it was good to know others were going through that. [...] So ahm, and eventually I'll get through, but so it's ...so just knowing that this is not uncommon. Knowing that lots of these people, lots in here, probably in worse shape.
In looking and speaking with others in the program, Patrick at once felt encouraged that others had feelings analogous to his though he realized that he was probably more depressed than they were. Betty, a volunteer, also shares her relief to find out she was not alone and that this kind of knowledge improved her confidence (relating to the earlier theme "What can I do?"), despite the fact that she acknowledges expected differences between her and others:
It is a good thing because you find out that there are other people - LOT'S of other people who are going through similar circumstances. Um, all of us are different of course, but and some of the people have had a more difficult time than I did for 80
sure. But it's good to get others' experience and you boost each other's confidence, too.[..] It's a big thing when you do get into the program and you realize that all these volunteers have been through it and here they are, they are functioning quite well. "I guess I can do that too."
These participants said they took solace in knowing they were not alone, by seeing others successfully going through the cardiac rehabilitation program. At the same time, however, they preserved their own uniqueness considering that others were possibly in worse (or better) shape.
Kyle's is an ideal case to represent the Puzzling theme. He, like the other participants, searched for causal factors and tried to piece together what caused his heart attack. In doing so, he juggled the lack of clear answers from health care providers with his own personal theories on the cause of this heart attack. In addition, Kyle set himself apart from the other program participants. He considered himself an anomaly and felt that the program was designed for heart patients with a certain profile, which he did not fit:
I think it was designed among you know people that are retired, people that have all the time in the world during the day and they, all of them had their spouses so you know it was, I found the information could have been delivered a little quicker, more succinct. But again that's me and I know I'm the anomaly in the group as opposed to the rest of the folks there, so.
As a result, he placed great value on the chance he had to talk to a fellow heart patient who was in a similar situation to him (i.e., a young executive at the same stage of life and with the same kind of lifestyle and sources of stress). During our interview Kyle talked excitedly about an idea he had for the creation of discussion groups that were sorted by age where people could share and discuss their own stories. As it was, he found it hard to relate to the situation in which many others in the program found themselves. He wished there was more of a chance to connect with others like he had with the young executive: 81
It would be nice if there was those groups like what do they call those groups like not a focus group but you are in a room and almost like... alcoholics sitting in a circle and you say, you know I'm an alcoholic and this is what happened to me? And talking about it you know? And your fears and the psychology of it I guess was something that never really came up. Like in some of the classes you know you are asked to talk about, you know you had a heart attack, when... but you know you didn 't kind of say I have a wife, kids, stressful job, big mortgage, you know. People weren't kind of opening up. And maybe that's different. A lot ofpeople don't like doing that. But if you had the option to do that in your right age group, people that can relate to you, that would be really helpful.
Comments participants made which reflected the theme Puzzling show both implicitly and explicitly that comparison with others is an important aspect of being in a cardiac rehabilitation program. The Cardiac Wellness Program provides participants an opportunity to chat with and observe others who are undergoing similar trials and experiences. Comparing to others helped to provide many participants with both a sense of distinction as well as reassurance that they were not alone in their ordeal.
Considering Change
As participants sought to make sense of their problem, they asked questions of themselves about what and how to change. These questions became more pressing if they could not make sense of what may have caused their heart problem. Study participants considered areas for change hand in hand with their search for causal factors and comparisons with others (N= 18/20). Only two participants did not speak directly about areas for change:
Maurice, for one, had spent months in the hospital and was focused on re-gaining primary functions such as walking and carrying out life's activities, and Todd, who, as mentioned above, did not consider himself to necessarily be a heart patient. 82
The perception certain participants had of the typical heart patient profile meant that considering areas of change and improvement was a source of worry. Three participants didn't feel they had obvious changeable risk factors that they could improve on. As Owen demonstrates below, he saw himself as a different kind of case than the other patients for the simple reasons that he did not consider himself to be overweight (though his BMI is 25.5 kg/m which is the lowest number in the "overweight" range on the BMI scale) and that he figured he had a good diet. He reckoned, therefore, that he was left with fewer options for change in hopes of improving his chances against a future heart event:
Well the family history is one of heart problems. My father died of a heart attack walking down a sidewalk. Just (claps hands together) bang! You know. Um and my mother died of heart related problems too so I knew that this wasn 't totally unheard of I also knew then that I had to do everything I could but I also, you know, in the sense that I'm a little different case than some because I don't carry a lot of extra weight, we've always kept a very good diet, and so the weight and diet thing which affects a lot of people when they have a heart attack really isn't a bit thing for me so I had to get to cardiac wellness to sort of figure out what could I do.
For Owen, part of the value and meaning in attending a program like CWIC's was that it was a way to figure out what he could do to change or improve his heart health when to him, no changes were readily obvious. In contrast, Josip talked about the many changes he had made and the difference he noticed in how he looked and felt. Josip was what one might call the
"typical" heart patient; he was overweight (BMI 32. 6 kg/m2), had diabetes, a poor diet and sedentary lifestyle. He described how he used to overeat and then go lay down for two or three hours until it "settled down." He talked about the changes he made since attending the Cardiac
Wellness Program:
It's one of the best things that people with heart attacks or heart problems ever came to. Because they show you how to live 83
properly. How to eat properly, you don't have no more pain. You know. My since my cardiac wellness course, for 12 weeks now, is a... Ilost 20-25 pounds I guess. I eat properly. I do my exercise pretty-well daily. They showed me how to do that.
The value of the program for Josip was straightforward in that the things he needed to change were obvious and when he followed the advice of the program he enjoyed the benefits of losing weight and feeling better.
Nine study participants expressed at one point or another that they were still working out what type of change would be possible for them. Patrick was only three weeks into the program at the time of our interview and was feeling like he needed to make changes in his life to reduce his stress levels and postpone a second heart attack. Even though he said heredity was a strong factor - "none of the males in my family made it past 66, 67," - Patrick still searched for what things he could change. He reasoned that his high cholesterol level, now under control with medication, was the result of genetics. He was not overweight. He did not have grey hair. He was a smoker, and admitted that he should quit but he was tired of being "nagged." Patrick did not talk about quitting smoking as much as he focused on what he could do to change the stress he experienced. To him, the stress was of greater concern than the dangers of smoking. He reflected on how he felt about change and where he was at:
You know you start having an awfully strong desire to say what we've been doing is not good enough anymore. You need to do something different. But I haven't identified what the 'different' is.
"Identifying what the different is" captures what certain participants are going through as they participate in the Cardiac Wellness Program. Those who choose to attend cardiac rehabilitation programs have the benefit of being in a setting where they have other heart 84 patients to look at and compare to, and ultimately define what their heart issue means for them and their lives.
The theme Puzzling illustrates how participants in the Cardiac Wellness Program both ponder and define their situation, how sick they are, and what they can possibly change. What participants considered as possible change in their life was associated with how they searched for causal factors and placed themselves in relation to others in the program or a pre conceived notion of the typical risk factors for heart disease. Those who felt they had less to change felt disconcerted and attended CWIC to help find answers.
II. Practice. Structure, and Care
In this section I present another two themes - Structure and Staff. Structure stems primarily from my fieldwork observations at the exercise sessions at both World Health Club and Cardel Place, as well as my observations at the education classes. Within this theme I describe the structure and routine of cardiac rehabilitation exercise sessions by outlining clinic practices and protocol. I use the term practice to describe those actions that staff (who monitor) and patients (who exercise) engage in to "do" cardiac rehabilitation. I use the term protocol to show how these practices are carried out in the setting of cardiac rehabilitation. In this section I illustrate how participants spoke about learning to monitor themselves and the benefit participants purported to have gained from the structure and routine of cardiac rehabilitation.
The second theme in this section, Staff, illustrates three main elements inherent in the interactions that participants had with the cardiac wellness staff. These elements include access to staff (distance, time and availability), expertise and knowledge (staff were 85 specialised in heart health and were a source of information), and care (friendly, courteous staff helped patients to feel cared for).
Structure
The theme, Structure, illustrates the way in which, as practices follow a protocol, cardiac rehabilitation is carried out. I use the term practice in two ways: the first is as a way to label the routine actions of staff necessary in carrying out cardiac rehabilitation, and the second is as a way to depict how heart patients learn new skills - exercise and self-monitoring
- by attending rehabilitation regularly (twice a week). Protocol refers to the enactment of these practices in a particular setting- cardiac rehabilitation exercise sessions. This theme stemmed from my observations and my study participants' remarks about the exercise sessions.21 The structure of cardiac rehabilitation provided some participants with a sense of accountability and routine which they found helpful. The expressions for this theme came from observations
(314 expressions) and interviews (136 expressions).
Monitoring
Though staff engaged in a variety of practices specific to their professional discipline
(i.e., the practices of exercise specialists were different from those of nurses), I focus particularly on the practices of all disciplines of staff that fell under the notion of monitoring.
To monitor is to "observe and check the progress or quality of something over a period of time; to keep under systematic review" (Oxford English Dictionary). Although the roles of the staff members varied, each one contributed to a larger, over-arching practice of monitoring.
By monitoring, staff kept heart patients under review as they engaged in the potentially risky act of physical exertion. In monitoring, staff systematically gathered and reviewed information
21 The exercise component of the program was mandatory - educational classes were optional. I recruited my study participants at the exercise sessions and so all participants had this in common - not all of them had attended educational classes. 86 from patients by asking them questions, measuring and recording their bodily functions, listening to their stories, and literally watching or "keeping an eye on them" before, during, and after exercise sessions.
The first way staff monitored patients was by asking them questions. Nurses, exercise specialists and exercise leaders all asked patients questions such as how they were feeling, if they had taken their medications, if they were having any problems, and how and if they were exercising on their own time. This line of questioning was the first step in determining whether or not it was safe for the patient to exercise on any given day. If a patient said he or she was not feeling well, staff asked even more questions: What do you feel? Where do you feel it? Can you rate your pain on a scale of one to ten? How long have you felt this way? Has this happened to you before? When asking questions, staff relied on patients' accounts of how they felt and their recollection of the history of events relevant to the situation. Questioning was both a structured and improvised aspect of monitoring; questions were a major component of regularly scheduled follow-ups with patients (as marked on the patients' charts), however staff could ask patients questions at any time, such as when patients were experiencing symptoms, not feeling well, or had questions of their own.
Another way staff monitored patients was by taking their blood pressure. Measuring blood pressure is a way to gauge the workload and function of the heart. A patient's blood pressure should not be too high or too low before he or she engages in exercise. Staff
22 Staff measure blood pressure during exercise in order to see how the patient's blood vessels are reacting to the exertion. The bottom number (pressure at diastole) should decrease - this indicates that the vessels are dilating to allow more blood flow to the extremities and working muscles. How much the bottom number moves is a representation of the elasticity of the blood vessels. 87 measure the patient's blood pressure as a matter of course but only if patients encountered a problem, had a question or were not feeling well. Sometimes nurses equipped patients with a 24-hour blood pressure machine to monitor blood pressure trends over a longer period of time. They asked the patients to write down any upsetting or stressful events so that they might correlate this information to any spikes or lows in blood pressure recorded by the machine during that time. Measuring blood pressure over a period of time provided more information about patients' everyday blood pressure level (providing a baseline and context). Nurses and exercise specialists pointed out that patients who arrived at exercise for the first time could have had high blood pressure readings because of feeling anxious about being in a new situation or attending exercise for the first time with a heart condition. Nurses monitored patients with diabetes by testing their blood sugar levels. As with blood pressure, they collected blood sugar readings of new patients who had diabetes before and after exercise for the first few visits, and then as needed (again if the patient was not feeling well). This test similarly ensured that the patient's blood sugar level was within a safe range for exertion and remained within an appropriate range after the patient had exercised. Staff also monitored heart rates. They kept an eye on patients' heart rate monitor readings, or, when the monitor appeared to malfunction (as they do), staff took a manual radial pulse by placing their fingers on the forearm of the patients and counting the heart rates against the seconds on their watch. Finally, when staff were not directly monitoring patients, they stood near to the supplies cart at the back of the exercise area and visually monitored the patients from there (staff asked patients to wear a nametag and keep it visible). They also intermittently walked through the aisles of treadmills and exercise equipment, glancing at the patients' charts to see 88 if follow-up questioning was required.23 When staff members needed to speak with a patient while he or she was exercising, I observed them often hopping up onto the front or side of the machine (treadmill in this case) in order to speak more easily with the patient. In cases where patients complained of such physical sensations as chest pains or light-headedness, staff initiated intensified practices of monitoring. If an exercise leader was working with the patient at the time, a registered nurse was called over to assess the patient. The nurse would ask the patient a series of questions about their symptoms: "Can you describe your pain?" "On a scale of one to ten, how would you rate your pain?" "Did you take your medications this morning?" "Have you felt this pain before?" The nurse would stand near to the patient and take his or her pulse by placing her fingers on the patient's wrist. The exercise leader would place a blood pressure cuff on the patient's arm and measure his or her blood pressure, relaying the blood pressure levels to the nurse who would write them down in the patient's chart. In one instance, I observed a nurse take a patient, who complained of a "funny feeling" in his head, to one of the on-site clinic rooms where she hooked the patient up to a portable ECG machine as a way to monitor more closely the activity of his heart. Monitoring practices were also relevant in educational classes. Staff did not monitor patients' physical bodies except in the LEARN24 weight management program where they weighed each patient at the start of each class. In education classes more generally, staff encouraged patients to monitor themselves and asked patients questions. I also observed monitoring practices during treadmill tests at the CWIC main clinic site. In this scenario patients are monitored even more closely than during exercise sessions. 23 Staff performed required follow-ups at the 4-6 week mark as well as at the 10-12 week mark of a patient's exercise. During these follow-ups, staff enquired about things such as the type of exercise patients were doing at home, or if they were having any issues with finding the time to exercise. 24 The LEARN (Lifestyle, Exercise, Attitudes, Relationships and Nutrition) weight management program was a course developed outside of CWIC and required an additional fee. 89 Exercise specialists consult with the patient's chart and ask questions. They measure the patients' height and weight and inquire about medications and how the patients are feeling. During treadmill tests patients are hooked up to ECG machines and wear a blood pressure cuff so that their heart's activity can be measured closely and continually. Prior to hopping on the treadmill for the test the patient in question is seen by a CWIC physician to ensure that he or she is well enough to perform the test. Treadmill tests are designed to give CWIC a basis for the patient's heart function and provides the information necessary to calculate a target heart rate for exercise. Patients must undergo a treadmill test prior to taking part in the exercise sessions, and undergo another one after their 12 weeks of exercise, and then again at one and two year intervals after their referral into the program. Much of the information staff gather through these practices is recorded in patients' charts. The presence of the chart was as important as that of the patient as a requirement for performing exercise at the weekly sessions. The patients' charts are also required during appointments with physicians. The importance of the chart as necessary to carrying out cardiac rehabilitation exercise was apparent on several occasions when a patient's chart was not present.25 Without their chart patients were not permitted to start their exercise. In sum, staff monitored patients in various ways throughout the exercise sessions. These monitoring practices were both structured and improvised; scheduled follow-ups mixed with improvised practice (which occurred mostly when a patient was not feeling well). Though staff carried out different yet overlapping practices according to their discipline and training level, they contribute to an overarching practice of monitoring. One goal of monitoring was to keep patients safe as they exercised. 23 As a result of the renovations at the Talisman and the spreading out of exercise over different locations across the city meant that the bins containing the charts had to be delivered each exercise day from the CWIC main site to the exercise site. Exercise Exercise in the context of cardiac rehabilitation is an emic concept defined by a strict set of rules. Exercise did not mean lifting weights, doing interval training, swimming or playing sports. Instead, exercise was structured around time and heart rate. Consistent exertion increases heart rate, thereby increasing the blood flow through the body. The heart, as a muscle, benefits from being worked-out in this way as it helps to condition the muscle. For this reason, treadmills and stationary bicycles were ideal pieces of equipment because one could set and adjust pace and incline to optimize reaching and remaining at any given target heart rate. Exercise at cardiac rehabilitation began with a 5-minute warm up, designed to stay below target heart rate, and then increased in intensity until the individual reached his or her target heart rate. Patients were instructed to exercise for 20 minutes26 at the target heart rate and then complete a 5 -minute cool down thereby lowering the heart rate again. At CWIC, cardiac patients' target heart rate was determined using the Karvonen Method. In this method, the maximum heart rate (HR) that the patient achieved on treadmill test27 is subtracted from the resting heart rate (Rest HR) to determine the heart rate reserve (HRR). The target heart rate prescribed to patients was a pre-determined percentage of the sum total of the HRR and the Rest HR. This percentage lies in the range of40 - 85% depending on exercise history, medical conditions, and abnormalities on the test (Program manager, personal communication).28 Patients who attended cardiac rehabilitation exercised under the watchful 26 As patients continued doing the exercise program, they increased the amount of time they spent at the target heart rate. 27 This is not based on age because medications that patients are prescribed will often blunt or limit heart rate response (Program Manager, personal communication). 28 For example, if a Max HR during a treadmill test is 130 and rest was 50, the HRR is 80. One example of a target heart rate (THR) would be 44 - 56% of this which equals 85 - 95 bpm (Program Manager, personal 91 eyes of staff. As they exercised, they asked staff questions and worked to increase the time and incline of the machine as their fitness improved. Monitoring: Staff Presence and Patient Uncertainty Many of my study participants (N= 16/20) related the presence of staff and their monitoring practices as being a source of comfort. That is, it eased their minds to know that staff were there for them, closely monitoring them as they participated in the Cardiac Wellness Program. These participants said things like "if you keel over, help is available (Maurice)" or "if I collapse there's a doctor here" (Dennis). These statements suggest that these participants felt that they could potentially die while doing the treadmill exercise. Cam's remarks capture this sentiment and how the staff practices of monitoring helped with his feelings of a possible event resulting in death: It's just a matter of, they 're going to be watching, monitoring, they are right there, everything is going to be good. They say, even if you have a heart attack, even if you have anything going on, there is always going to be people there that are going to be able to take care of it quickly. So. You never feel like you are going to drop dead (laughing) on this machine! A corollary of feeling comforted by staff monitoring practices was, for some patients (N=3/20) the course through which they were able to improve their confidence. Kyle, as described above, was experiencing a great deal of uncertainty following his heart attack. As he said, "You are pretty vulnerable, eh? When you are in those first few weeks when you are first wondering you know, can I run on a treadmill?" For Kyle, having staff present was essential in helping his confidence grow: All those kind of things just so you knew if there was a problem there was somebody there you know that could resuscitate you, communication). A patient learns what his or her prescribed THR is during the orientation session. It is also listed in patients' charts. 92 or you know you just, you had somebody there right you had nurses and you had doctors on staff. But that was huge. To get that confidence, to get that confidence back up. In this way, the presence of staff engaging in monitoring practices also relates to the earlier theme of Doing; participants were able to reconcile their fears and uncertainty about stepping on to a treadmill and exerting themselves under the watchful eyes of staff. Among these sixteen participants are those who suffered an MI and those who did not, as well as the two heart patients who were in cardiac rehabilitation as a result of routine medical screening. Some of these participants did, however, speak more emphatically about the benefits they felt from having staff continuously monitor them (N= 6/16). These six participants had all suffered a sudden MI, however. Betty, a volunteer, expressed her feelings as she began the program: I: And so at the beginning you said you were kind of nervous, and not sure Betty: Absolutely! Yeah. Fear and trembling! [Laughs] I: And what sort of things helped with that? Betty: The encouragement of the staff. You know and I found that was really helpful. Because they're right there watching you, making sure that you 're not overdoing or, you know and it's very well explained to you what you should be doing and, and that you know that they are there monitoring. And that really really helped. Other MI sufferers in this group of six also expressed similar sentiments, using, as Betty did, the term monitoring to convey the means through which they felt comforted by staff. One participant's comments demonstrate how the monitoring practices of staff, while structured, were also improvisational based on the level of a patient's need. Owen spoke about how the different level of attentiveness that staff showed him fluctuated according to his level of need: 93 I find with Cardiac Wellness that there is a comfort level there, that you've got all these folks around, and yes they don't come and be with you all the time, but the fact is they are there. And you know that if you have a little bit of a problem or you don't feel good - and I didn t when I first started, you know I had usually I had a nurse and an exercise specialist around me for a little while every time I exercise because I was encountering back problems and they thought that might be linked to heart and so on. So they were monitoring me pretty close at the start and since then everything has been great - no need. But nevertheless they are just pleasant people and they also drop by to chat, so. And check the blood pressure and see how things are going. And I won't get that anymore. And I'm feeling sad about leaving cardiac wellness in that sense, in two more weeks. Part of the meaning of the Cardiac Wellness Program for Owen was having staff around to make sure that he was okay. As the staff monitored Owen, they were able to discern that the pain he felt in his back was not related to his heart and that he was safe to carry out his exercise. On top of purely practical matters of safety, Owen valued the fact that staff members exhibited friendly gestures by stopping to simply to ask how he was doing when he was not experiencing pain and required specific monitoring per se (more follows on the friendliness of staff in the next theme). Overall, the monitoring by staff provided comfort to study participants during exercise. Those who spoke most ardently about how monitoring helped them were MI sufferers, and fell into the group of participants who expressed uncertainty as they entered the program. Participants who did not refer to any kind of appreciation for the monitoring practices of staff either demonstrated a high level of confidence (Norma, Richard) or were focused on the care they were receiving (or trying to establish) with health care providers outside of the Cardiac Wellness Program (Maurice, Christopher). 94 Self-Monitoring Patients in the program learned to monitor themselves. Through skilful self- monitoring, they transfer the practices of the clinic into their daily lives. Exercise leaders, who conducted first-day patient orientation sessions, taught new patients how to exercise in a specific way (as was described in the previous section). Exercise leaders taught patients to monitor themselves by watching and maintaining a specific heart rate, considering their rate of perceived exertion (RPE29), and paying attention to breathing. They encouraged patients to use this practice when they were exercising on their own at home. Staff also encouraged patients to learn how to monitor themselves in the educational classes. I observed this in the nutrition classes as well as in the stress management series. The dieticians who taught these classes encouraged patients to monitor not only their daily intake of calories but also the amount (measured in milligrams or grams, or as a percentage of recommended daily intake) of different dietary constituents such as fat, saturated fat and sodium. As part of teaching patients to record and be aware of their dietary intake, the dieticians taught patients how to understand and read the Nutrition Facts Label found on all packaged food products. In one nutrition class, Food and Mood, part of the focus was on helping class participants become more aware of their emotional triggers for eating (hunger levels and stress, for instance) which often resulted in choosing unhealthy foods. Staff encouraged class participants to monitor how they felt, to keep a record of events which preceded unhealthy eating in an effort to increase the patients' awareness. In this way, heart patients could ideally monitor themselves as a way to maintain healthy eating habits. Self- 29 As described in the background chapter, the rate of perceived exertion is a subjective scale where an individual rates how hard they feel they are working (exerting themselves) on a scale of 1 -20. The ideal at cardiac rehabilitation exercise is for the patient to feel they are working "somewhat hard" which is typically around the 11 rating mark. 95 monitoring was also addressed in the stress management series classes. I observed an instructor teaching the members of the class to consider their own "internal stress barometer" to become more aware of when their stress levels rose and what might have caused this to happen. Weekly homework assignments got patients to reflect on and write down the types of stress they experience. The type of monitoring encouraged in the educational classes had patients reflect on and record emotions, events, and daily dietary content in order to generate a source of information that they could work from to better understand and modify their health habits. Between exercise sessions and education classes, staff encouraged patients to practice monitoring on many different levels. Seven study participants talked about learning self-monitoring during their time in the program. They learned to monitor: heart rate, calories, and blood pressure. Richard was very fit and talked about having had a good diet all his life (he fell into the category above of those participants who felt they did not have much to change). He entered the program to get a stress test that would provide information about his heart. What Richard said he would take away from his participation in the program was that he was now monitoring his heart rate when he exercised where he had not before. Josip began monitoring his daily caloric intake which was a turning point in his attitude toward the program and how he felt overall. Though he was initially skeptical and did not feel he was gaining much from the program, in week 3 he started counting the calories he consumed. This course, he said, was the primary factor underlying the many changes he had made to his eating habits and how he felt physically: So that course in there was I don't know my couple times like I said and I wasn't sure, everybody, you know the dietician would say what did you accomplish this week you know. I said I'm still eating the same way and. I don't know, you know. So. My third week got a little bit better because I had to monitor all my food. My first week I was there but I never cared that much so I never did. But my third 96 one, when I managed, put the calories down, I was totally amazed at how well the program was to you know to see what you eat every day. And then I don 7 snack every hour on the hour. I snack every three hours now. And my fifth, sixth and my seventh weeks I just kind of felt better. I slept good overnight, like you know I didn't wake up no more [...] My stress level went down. My wife even noticed. Until he monitored his food intake, Josip was confused about what exactly to do. He reflected that the outcome of taking on the practice of monitoring his calories changed his perception of the degree of control he had over his body: I'm amazed myself how those people really got me to come to that particular thing that I'm totally in control. You know. I never knew I could be in control (giggle). Another participant, Lewis, talked more than any of the others about the self- monitoring practices he had begun since he joined the Cardiac Wellness Program. He took his blood pressure four times a day using a special device he had purchased. At each instance, the device took three blood pressure measurements and averaged them out to generate one reading: Well it's one of these meters you can buy. I have a pedometer and it's the same company. It's these guys. Anyway they have, you take that and it records it. And you can push it into - they have software - but I just pushed this into a spreadsheet. Because what happens, because every time you take a reading you get three. They are averaging it. That's why there's so many dots, because every reading is really three dots. And it has - it will measure this and this and this (tapping paper). But it's so busy if you connect all those you can't read it. So this is some kind of almost a two day running average. So it just, it swings it out and the dots you still see the dots. And this - and that will be two standard deviations around it. So if I, say in the morning I'm on the bottom end here and in the afternoon I'm in the top end. But this is holding pretty well at a 110/70 which is what they wanted when they put that drug in, so. So it is working. I: So you are keeping track you are like charting your - P: Everyday. Yeah. Multiple times a day 97 I: How does this help you? P: It gives me (clicking his pen open and closed) a frame of reference. [...] By regularly recording and monitoring his blood pressure Lewis was generating a set of information (data) that he could use to orient himself to his situation and the kind of progress he was making while in the Cardiac Wellness Program. Lewis was unique in how intensely he monitored his blood pressure and heart rate. However, for him, "keeping track of pressures" helped him to feel as though he was actively doing something about his situation: It has made me feel that lam doing something. I'm not just waiting. I'm not sure how effective it is, but at least you get that sense of doing something. [...]I guess it gives you some sense that there is a way to control your numbers. But how effective that will be I don't know. Josip and Lewis were different in many respects; Josip was overweight, had diabetes, did not suffer from an MI and underwent CABG surgery, whereas Lewis was not overweight, suffered an MI, did not have diabetes and received two stents. Both, however, reflected on how self-monitoring affected their sense of control over their bodies. Though Lewis admitted that he was not sure exactly how effective his self-monitoring practices were going to be in terms of improving his heart health, he said that it was a way of gaining a sense of control and feeling like he was able to do something about his circumstances. Josip and Lewis had different approaches and spoke about learning to monitor different things (calories vs. blood pressure and pulse), however both said that this practice was a big "take-away" from the program for them. 98 Protocol I define protocol as the structured way that participants carried out practices specific to the exercise sessions of cardiac rehabilitation. Staff practices of monitoring and the patients' practice of exercise were the two major factors that defined this protocol. Cardiac wellness exercise sessions took place week-day mornings, Monday through Thursday (Monday and Wednesday at Cardel Place and Tuesday and Thursday at World Health Club). Each morning was divided into four one-hour intervals from 8am until 12pm (patients chose the hour they would like to attend and attended only one hour per day). Patients first checked in (for attendance purposes) at the volunteer desk where they then collected their chart and put on a heart rate monitor and strap. They had to wear heart rate monitors in order to observe and determine when they had reached and maintained their target heart rate during exercise. Many treadmills and stationary bicycles were equipped with heart rate monitors. The monitors, however, were not always reliable. They picked up heart rates from nearby exercisers and were therefore not usable. Patients attached their chart to a clip board with special metal hooks which enabled them to hang it on their treadmill or stationary bike as they exercised.30 They then waited until it was time to check-in with a staff member before they could go to their exercise machine of choice.31 At check-in, patients approached staff (a nurse, exercise specialist or exercise leader) individually and the staff member asked the patients a series of questions (as described above) to ensure they were well enough to exercise. At this point, if the patient chart indicated it was required, the staff member took the 30 Patients did this at WHC only. At Cardel, because it is a smaller group/facility, charts were held on a small desk where staff stand. 31 The nurses and exercise specialists asked volunteers not to hand out charts until very near the start of the hour to avoid mixing incoming classes with out-going classes. During the busiest hours of exercise (10am and 1 lam), patients often arrived early and formed a line to wait for the go-ahead for check-in. 99 participant's blood pressure and/or blood sugar level.32 If these measurements were within a satisfactory range, the patients then moved to a piece of exercise equipment, made their charts visible by hanging it somewhere on equipment and began to exercise. If, however, a patient was not feeling well or had questions to ask, staff attended to them.33 These activities occurred in relatively defined spaces. If patients arrived early they would line-up near the volunteer desk (both World Health Club and Cardel Place). After receiving their chart and monitor, they formed another line-up along the side of the exercise area where staff formed a receiving line formation at the top of the hour to check patients in. When sensitive topic areas arose in these interactions between staff and patients, the staff guided the patient with whom they were speaking into an area that was out of the earshot of others. After completing their exercise, patients wrote down the details of their exercise into the specified boxes on their chart. They recorded the number of minutes they spent warming up, the number of minutes they spent at their target heart rate, and the value of the target heart rate. They also recorded the highest heart rate (peak) they achieved and how many minutes they spent in cool-down. Patients came to the supplies cart to grab a pen and looked for somewhere to stand and fill out their charts. Once they completed this task patients returned their chart to the volunteers (being sure to place their name-tag in the front pouch) and removed, sanitized, and put away the heart rate monitors. They then left for the day. 32 Blood pressure and blood sugars (for diabetic patients only) are not measured at every exercise session. They are measured before, during and after exercise for the first three visits and then at less-frequent intervals after that or as needed such as when a patient is not feeling well. 33 The division of staff roles and expertise came into play here. If an exercise leader was dealing with a patient who expressed she was feeling symptoms the exercise leader would enlist the help of the program nurses. 100 Those patients arriving for their first day of exercise had no idea of their role and how to carry out structured behaviours such as signing and checking in, or the specific type of exercise they would be doing. Irene, a volunteer, remembers how she felt the first day she arrived to exercise: Well, [on the first day I felt] at sea, like everybody else. I can recognize the symptoms with the people who come in on the first day who just look bewildered - where am I? Where am I going? You know. And they - it takes a day or two before you start to, I mean you know where you are supposed to be going, and all those things, but getting to feel that this is just part of your day - that takes a little longer. Staff and volunteers guided patients in learning the protocol of cardiac rehabilitation exercise. Volunteers showed first day patients how to check-in and put on the heart rate monitors. Exercise leaders took first-day patients (often a small group of two or three in each hour timeslot) through the orientation sessions. The exercise leader stayed close-by to the patients for the duration of their first exercise hour. The exercise leader had patients look at their chart to determine what their prescribed target heart rate was (the exercise specialist writes this rate in the chart, after calculating it from the results of the treadmill test), and then would take the group of new patients over to a stationary bicycle34 and have them start pedalling slowly to warm up. Step-by-step, the exercise leader led the first-day patients through how to sit on the bike properly to avoid knee injury, how to warm up, how to monitor heart rate, how to operate the machines, cool down, and finally how to input the information into the chart at the end of the cycle. From what I observed, it could take patients more than one or two sessions to learn the procedures, but they eventually became well-rehearsed in the structures of the exercise 34 Exercise leaders conduct the orientation with patients on the stationary bicycles on the first day because it was easier to speak to a group of patients on the bicycle rather than on treadmills. They were closer together and therefore easier to communicate with (in the noisy gym) and monitor closely. 101 program. Learning involved becoming familiar with new behaviours, language terms and equipment: Some of the new patients are very awkward with the heart rate monitor straps and have to be instructed. The volunteer shows one patient - You just twist the part where it meets. Yes and put the elastic in that bin down there, OH! No, you have to detach the plastic monitor part from the elastic. Yes, now put that and your wristwatch on the towel and you spray it down with alcohol, yes and then you attach them like this. Patients fumble through this obligingly. The patients who have obviously been therefor a number of weeks are fast and methodical CWIC patients learned the practices and protocol of exercise sessions. They were guided by volunteers and staff members. Patients enter the structured setting and are shown how to do cardiac rehabilitation. They learned a specific protocol and practice a specific type of exercise while being monitored by staff, and learning to monitor themselves. Seven participants said they benefited from the structure and routine of the Cardiac Wellness Program. They said that the physical presence of others and the structure of the bi weekly exercise sessions were important; the structure of the program helped to provide motivation and improve confidence, as well as build accountability to improve for the treadmill test that patients undergo after they have completed their 12 weeks of exercise. Some individuals (N=5/7) drove long distances to exercise on-site with the staff rather than doing the home program (discussed more in the next theme). The structured nature of the program was a major draw. Todd had a membership at a local gym but chose instead to drive in twice a week to the program: I've enjoyed - like I have a gym membership here in [home town]. But I've been coming to Calgary on the Monday and Wednesdays to exercise because it's more structured for me and that always helps me to keep motivated to do it, you know? 102 Marion also expressed the importance of accountability and how this was tied to the structural protocols of checking in with staff at each exercise session: I actually think that that accountability is helpjul. You know it's like going to Weight Watchers. Right? You check in. Do you really need somebody giving you a pep talk or whatever? Probably not. But the fact that you know you are going to meet somebody the following week - you know it kind of holds you accountable. [...] And I feel like being part of the Cardiac Wellness Program has given me the excuse to ask for the time to make sure that I've changed ... no. That I've tried to build a routine where my physical and mental health is important and I've had the time to convince myself that saying no to things at work is ok I don't have to solve all the problems, I don't have be everything to everyone. Checking-in and being monitored by staff provided Marion a sense of accountability, an element which helped her to build a routine doing something that did not necessarily "turn her crank." In this way it acted as an both an opportunity and a motivation. For these seven patients, the structure the program provided was one of the greatest sources of meaning, the cardiac rehabilitation program acted as a jumpstart, a boost in confidence, motivation, and a source of accountability for starting something new. Staff Study participants talked about the staff as an important and valuable aspect of the program. Having easy access to caring, compassionate people who were knowledgeable and experienced in the field of heart health was meaningful to the majority of my study participants (N=18/20). Fourteen participants said they appreciated having easy, consistent access to health care providers (no barriers such as appointments, schedules, time limits and waiting lists). Eight study participants remarked that these professionals were specialists in the field of heart health and understood the problems heart patients face. Finally, nearly all (N=18/20) participants referred to CWIC staff as friendly and caring. (These groups are not 103 mutually exclusive and some patients overlap all three categories). The expressions for this theme came from both interviews (129 expressions) and observations (61 expressions). Access Fourteen study participants talked about access. How participants accessed the program, opportunities they had for interaction (whether face to face or over the phone) with health care providers who were trained in cardiac care, as well as the amount of time participants had to use what the program offers were relevant to the notion of access in this context. As the first two themes demonstrated, many participants had pressing questions (though to varying degrees) about what they can do physically as well as what they can and need to change. The opportunities to interact and contact staff provided CWIC patients the chance to ask their questions.35 Geographic distance influenced some participants' decisions on how and what aspects of the program to access. Six of my study participants did not live in Calgary and chose to commute to the exercise program. Two of these participants overcame the distance to attend exercise sessions but not education classes; Bruce and Cam both said they felt that they could make do on their own with the information on diet and stress that was provided to them in the red binder upon entry to the program. Todd started with the Home Program36 because he had paid for a gym membership in his hometown, however he soon decided to drive in to Calgary instead in order to participate in the exercise program: And another thing the ah, (lost his thought for a second) oh! Tie- ins with the program and the at-home program like there doesn 't seem to be a lot of... when I mentioned that I wanted to do it at 15 In referring to staff I mean the various members of the care teams of CWIC - nurses, exercise specialists, dieticians, and physicians. 36 In the Home Program individuals complete their exercise at home and keep track of their exercise by writing down the details onto specific sheets and faxing them to the CWIC main office. 104 home because I have this gym membership, there didn7 seem to be a lot of tie-in between the structured program that they have set out and what my plan would be, you know. They said oh yeah we've got some forms here for you to fill out and that but,... and you can phone but maybe that's all they can do too, but you know it would be nice ... I'm the kind of person who needs structure to go by. It helps me to see where I'm going to keep motivated and you know? [...JI like the idea of having them monitor you and sort of, you know you've got somebody there to ask a question in person. As Todd's remarks illustrate, structure and staff presence provided motivation and a forum for asking questions. Simply practicing the exercise and keeping a record of it was not enough to keep Todd motivated, and he appreciated having someone available when he had questions to ask. Four participants conveyed how accessing other parts of health care such as family physicians and cardiologists was difficult compared to the access they felt they had at CWIC. These participants mentioned barriers such as wait times, lack of follow-through in securing booked appointments, being unable to speak directly with physicians and having a limited amount of time in appointments to ask questions. Christopher remarked on how access to cardiologists outside of CWIC was more difficult and how he had to prepare in advance with a list of questions: I'm finally getting to see a cardiologist in December. Ah, so we are working on a list of questions right now. Cause those appointments don't come around very often. Christopher talked more than any other study participant about getting access to appointments with his cardiologist outside of CWIC and the problems it posed. He had been diagnosed with severe CAD, was physically limited by the symptoms he experienced and was wary about exerting himself. He wanted more answers about what his condition "really was." Christopher said the staff at CWIC were one of the most important things about the program. 105 The significance for him was not so much a result of the monitoring practices that staff engaged in, but he referred instead to feeling guided by staff and the support he felt he received from them above and beyond the information they provided in helping him to answer his questions: I think the support and the guidance. You know, it's knowing that it isn't six, seven months later and I'm still wondering things. Having the support going through this, it's - you know you are not alone. The staff, that's been very positive. I think that's the biggest thing, in terms of yeah, I get my exercise and stuff like that and it's making a difference but um, the biggest thing is that that support has been great to me. Christopher shows a need for guidance and support from health care providers as he configured his understanding of how sick he was, and what his blocked coronary arteries suggest about the arteries in the rest of his body. This was something he could not figure out on his own; instead, he required the technology and expertise of health care providers. His comments suggest that although information about his situation and learning to practice exercise were helpful, the most meaningful thing to him was the assistance and encouragement the CWIC staff showed him. Being able to ask questions over the phone to exercise specialists or nurses was also important to the participants who talked about access. CWIC patients were given the telephone number of their assigned exercise specialist. As part of the formal message of the welcome session and nutritional wellness orientation, staff invited and encouraged patients to phone in with their questions at any time. As one registered dietician told a Welcome Session class that "the main CWIC phone number will become a major lifeline to you through this 106 process." Also, CWIC patients have two years to access services37 (including phoning in to ask questions) - something which was touched on by five participants. Bruce mentioned that the two-year window would be useful because it would give him a chance to try the exercise routine that he had developed while in the exercise classes (he had recently finished the 12 weeks) and call back later on to ask questions or address any other issues or concerns that had arisen as he practiced on his own. Also, he said that having two years to access the program would allow him to explore information on diet and stress management on his own, and if that did not suffice, he could take advantage of the classes at some point in the future. Marion realized the value of continued access to the program after she finished her twelve weeks of exercise. I was at a local fitness facility exercising one Sunday a few months after I had finished my fieldwork when I ran into Marion who was just on her way to exercise. We stopped and chatted and I asked her how things were going since she had completed the program and she mentioned how appreciative she was of the two-year access she had to the program so that she could phone and ask questions if any arose: I originally thought "two years, phff." But to be able to call and ask a question - like I was doing something that I wasn't sure I should be doing - so to be able to call them and ask them about it, I mean like, to have to go and book a doctor's appointment for a simple question like that? And they seem very open once you contact them to answer your questions. Like they don't call you but if you call to ask a question they are very helpful. So it's good. (close paraphrase). Marion still had questions about what she should and should not be doing (relates to the theme #1 doing) after her heart attack even though she had completed the program. Rather than having to book an appointment with a doctor, she was able to quickly call and ask her 37 Except exercise. In order to continue with monitored exercise patients must sign up for the Lifestyle Maintenance Program and pay an additional fee. 107 question. Not only was the opportunity there for her to do so but Marion said that she felt comfortable because the staff reacted kindly to her call and remained helpful. Expertise Eight study participants identified the knowledge and expertise of the staff at CWIC who understood the challenges and issues specific to heart patients. The nurses at cardiac wellness concurrently, or had previously, worked in the hospital setting on cardiac care units and had been working with heart patients for a number of years. The exercise specialists had special cardiac training above and beyond their degree in Kinesiology. These participants spoke of staff as experts with the knowledge and experience in the heart specific area who could answer their questions, therefore they felt confident and comfortable in the knowledge displayed by staff. Seven of the nine participants were current CWIC patients and the other two were volunteers. Those who were current patients in the program said they were happy to be in the Cardiac Wellness Program because staff "know what they're doing," that they had "experience to help you with it" and that they were "extremely knowledgeable." The two volunteers (Betty and Hans), however, were more reflective on why this was important. Betty stated: You know and I guess if you joined a gym like this one, or had a personal trainer that could give you a hand but they wouldn 't really understand the needs of a post cardiac patient. So it would be really hard, you'd be struggling. And who would give you advice, because a family doctor can only do so much. Cardiologists can only do so much. The staff at CWIC, because of their specialised training and daily experience working with cardiac patients, knew very well the problems and issues CWIC patients might face, and could provide useful advice which stemmed from their knowledge base. Betty's comments reflect the specific role of cardiac wellness staff in giving the cardiac patient the kind of advice they 108 need as they learned to exercise, diet and simply live life after a cardiac event. As patients practiced these things, the Cardiac Wellness Program staff were present, able and willing to give the proper kinds of recommendations and suggestions specific to heart patients in cardiac rehabilitation programs. Betty felt that family practice and acute care physicians had limits regarding their ability to provide the patient with ongoing guidance as they progressed through the process of cardiac rehabilitation. Her remarks also hearken back to the feeling of access that was important to the participants. The special setting of cardiac rehabilitation combined regular access to professionals who were specialised in helping cardiac patients learn and practice exercise and proper diet. Care Eighteen participants talked about how friendly and inviting the CWIC staff were. Fifteen participants volunteered these comments of their own accord whereas the remaining three said positive things about the staff when I asked their opinion. The terms these participants used to describe the staff at cardiac wellness from most frequent to least frequent were: friendly (11), helpful (8), caring (7), encouraging (4), pleasant (4), nice (4), compassionate (3), professional (3), courteous (2), supportive (2), patient (2), concerned (2), interested (2), talkative (1), understanding (1), professional (1), reassuring (1), and inspiring (1). The data for this sub- theme came from observations (61 expressions) and interviews (99 expressions). Although all 18 participants were generous in their remarks about the staff, three patients in particular stood out in the earnestness with which they discussed how much the staff meant to them. All three participants identified themselves as "people persons," and two of these participants, Irene and Bruce, were the ones who had undergone stress tests which suggested a low chance of heart problems and then ended up having a heart attack. Both 109 talked about how easy it was to ask the staff questions when they were not feeling well or when they wanted clarification on what kinds of behaviours and activities were safe for someone who had just suffered a heart attack. Bruce felt that the staff at CWIC took a vested interest in "the unique situation you found yourself in" and that when they asked him the daily check-in questions such as if he had taken his meds and how he was feeling that day that they had a genuine interest in knowing the information rather than simply following a protocol: I generally expect that they would always ask you 'how do you feel' because [those are] standard questions. [...] Ah, but having said that, it does re-affirm that they do care because of the way that they're actually asking you, um so even though they have to get that information there's a real keen interest to knowing that information [..]it was always reassuring to know that somebody was willing to talk to you about how you are feeling at that moment in time and what would be best for you there. And if you needed to see a doctor at that point or if they thought it would be in your best interest then they literally walk you over to the other section so that you could go and talk to somebody there. So, I was quite impressed. The third participant in this group, Owen, described himself as "a person that's very high on relationships and customer service and that kind of thing." Owen remarked on the difference between simply receiving professional advice and what it felt like to be cared for: I've been very very impressed with the people at cardiac wellness. [...] I feel like I belong, I feel like I've been looked after. So it's more subtle than just saying I've been looked after because someone helped me with my exercises, or a nurse in the exercise program talked to me about things that I should be doing or whatever. It was not just that. It is also that it was done in a manner where I felt that I was being looked after and I wasn't being told what to do as much as I was being advised on a friendly basis. How the message and advice from staff came across and their manner of advising patients was very important, especially to those who placed a lot of importance on their connection with people, as Owen, Bruce, and Irene suggested they do. Owen said several times during his 110 interview that it was going to be difficult to leave the Cardiac Wellness Program. He knew it was important to have learned enough to be able to carry on with the exercises on his own, however he felt sad that he would be losing the connection and involvement he had with the program staff: Much as you say it's the professional expertise, and it is, the thing I'm going to miss the most is the association with the people. The other 15 participants also talked about how impressive and supportive the staff were if not to the same extent as the above three. Marion talked about the patience the nurses and exercise specialists showed to her; those she spoke with gave her the sense that they had time to answer her questions and did not mind repeating answers or explanations. She said: You just feel like people [i.e. the staff] have time. [...] And the other thing is that people have been really good about explaining things. Sort of ad-nauseum. When you need it ad- nauseum. And being patient about it. The supportive role that the staff played for cardiac wellness patients was part of the formal message patients receive as they attend the orientation sessions. During the Nutrition and Emotional Wellness Orientation, one dietician told the group that part of the role of the staff and professionals at CWIC is to be an advocate for patients as they navigate their way through the health care system with their heart issue. She stated, "part of my role here is to assist you in getting the answers that you need." One participant, Kyle, said he felt that he needed more in the way of direction and contact with staff. He agreed that having the staff close-by to answer questions and give guidelines was useful and valuable: Sure, the - you know having somebody that was giving me guidelines when it came to targeted heart rate, the types of exercise I should be doing, ... um medication and how that Ill affects my heart rate and when I should take it and you know caffeine an hour and a half before or after the exercise. All those kind of things just so you knew if there was a problem there was somebody there ... You know, and really good tips on how to manage your exercise at home when you are doing it on your own. So that was good. And the fact that the staff were there and that you could call them at any time if you felt you needed some more explanation or help with something. But he felt there was still something missing. As I described previously, he was the most puzzled by his situation. During our interview he made mention on more than one occasion that he felt unsure and defenceless after his heart attack. He felt he would have benefitted from having a coordinator or "quarterback" as he called it; that is, a point of contact who would direct, organize and inform him of what steps of the program were upcoming: The people were wonderful but you are extremely vulnerable and almost like somebody taking care of you, saying ok you know what your stress test is going to be booked next, you '11 get a phone call and I'll give you a call when that test is going to be made, and don't forget the exercise program starts ... blah blah blah like almost somebody, I guess it's holding your hand. I definitely still felt -you know that coldfeeling you get sometimes where you are a bit of a number. [.. JLike I had a little bit of that feeling in the program and I think it's mainly because you are ultra vulnerable and you almost need somebody to be phoning you and saying ok ah how did your exercise classes go last week, are you going to be on track for the next two? Kyle felt vulnerable and suggested that his need for care and direction (structure) stemmed from this feeling. Seven participants said that the most meaningful thing about the program was staff. Reasons participants gave were combinations of the above three aspects of what patients felt they gained from staff: access to specialized health care providers to help answer their questions, the benefit of the CWIC staff's cardiac expertise, and the friendly comport demonstrated by staff. Dennis said: 112 I felt cared for. [Pause] Ah I felt like I was in good hands. I felt that I was an important person while I was in, part of it. You know they made you really feel that you were ah, pretty important, to make sure that you survived. Yeah. Good, too, they were all good at chatting with people and encouraging them. And ah. Generally that was it. For Dennis and the others in this group of participants, feeling cared for was an important aspect of their participation in the Cardiac Wellness Program. Whether they felt like they needed more structured contact, as Kyle did, or whether the care they felt they received was much more than what they had received in the past, these participants talked about care as being significant to them and their comfort level, confidence level and their attitudes toward the program. In sum, the theme, Staff, takes account of study participants' interactions with the staff members in the Cardiac Wellness Program. I describe how the availability of CWIC health care providers was a motivation for some patients who lived out of town. Having continual, open access to staff expertise for two years was valued by participants who had (or thought they may have in future) questions after they had completed their 12 weeks of exercise. In addition to access and expertise, this theme demonstrates my study participants' almost unanimous remarks about their appreciation of the friendliness of the cardiac wellness staff. The friendliness that staff exhibited translated into a sense of feeling cared for by many participants. Participants who were satisfied and un-satisfied alike suggested a need for guidance and support by professionals who were knowledgeable about the issues facing post- cardiac patients. Results Summary In summary, the first two themes, Doing and Puzzling, demonstrate the different kinds of uncertainty participants dealt with as they took part in the cardiac rehabilitation program. 113 Study participants expressed uncertainty to varying degrees and about different things. One kind of uncertainty participants felt was around what was safe to do physically, which raised questions about the local and practical matters of the body and the ability to carry out life activities. Participants who had either recently suffered a heart event or been diagnosed with CAD were more insecure in their bodies than those who had not suffered an event or had been living with CAD for a number of years. Those who were more insecure approached Cardiac Wellness exercise sessions with more trepidation, however the exercise sessions proved to be a useful way of re-gaining confidence and translating levels of physical exertion on the treadmill into daily life activities. Another kind of uncertainty that emerged from my data had to do with participants' understanding of the problem they were facing. All study participants considered what caused their heart event. Some participants demonstrated a greater preoccupation with understanding the causes than others. Piecing together causal factors and explanations proved more complex than simply picking relevant risk factors from a list. Messages from health care providers, the multifaceted cause-equation for heart disease, and preconceived notions of what makes up a typical heart patient shaped the way participants understood their situation. In addition, comparing to others in the program was a way for some study participants to define their circumstances. Meeting other heart patients was a way to determine how sick one was relative to others and to share stories about how they had learned to cope with their disease. The second two themes, Structure and Staff, illustrate the practices of the clinic and the interactions between patients and CWIC staff members. My data revealed that uncertainty was also an aspect of the health care practices. Staff carried out monitoring practices which created representations of patients' bodies (or hearts) which informed decisions of care within 114 the cardiac rehabilitation context. An individual's heart and the arteries that provide it with blood cannot be seen with the naked eye. Nor can the heart explain how hard it is working to pump blood through the vessels of the body as a patient exercises. As a result, the question of the inner workings of the body was ever-present. The monitoring practices of the cardiac rehabilitation program, in the clinic and in the exercise sessions, generated information and representations which help staff to understand what was happening with each patient, and whether or not it was safe for them to exercise. My observations show that staff perform monitoring practices in a scheduled fashion (though simultaneously open to improvisation and change), and that patients learn to follow the schedule of practices as they take part in exercise. Exercise is a highly defined protocol and is best suited to treadmills or exercise bicycles where the speed and level of difficulty can be controlled. The structured nature of the exercise sessions and the presence of staff was remarked upon as important to those participants in my study who talked about the sense of accountability and routine it provided them as they learned to exercise and incorporate it into their daily lives. Participants who displayed confidence and insecurity in their bodies alike shared that learning to monitor different features of their physical bodies and behaviours was a means of affecting change and coping with the uncertainty of their heart condition. All participants spoke highly of their interactions with the CWIC staff. Having enough time (in both the short and long term scenarios) and regular, straightforward access to knowledgeable health care providers was important. With the exception of one participant who felt he needed more direction from a single staff member or nurse as a way of coaching him through the program, regular access to health care providers of different areas of expertise (within the realm of cardiac issues), and the friendliness and patience that staff showed was 115 significant for my study participants. This appreciation included, for some, the two year window of opportunity the program afforded patients to remain affiliated and have access to specialised health care providers to whom they could ask questions. In the next section I will discuss my findings by relating them to relevant research and to the over-arching meta-themes of Uncertainty and Order, and by reflecting on how they fit within the frameworks set out by Wheatiey and Mol. To conclude I will outline the limitations of this study and implications this research could have for rehabilitation programs and future research of the kind in the area alike. 116 CHAPTER 4 - DISCUSSION AND CONCLUSION Introduction In this research I set out to understand the meaning of cardiac rehabilitation programs to patients. I knew the program held significance for people because of my work as a research assistant; as I interviewed past heart patients about their diet and exercise patterns, those who had taken part in the Cardiac Wellness Program at the Talisman centre spoke highly of it and expressed a desire to still be involved. My results indicate that the meaning of the program varied between participants - some responded that it was the structure and routine that the program afforded them. Others said it was their ability to regain a sense of confidence in their bodies and ergo their lives at large. Several participants said it was the staff and the association with the people that was meaningful to them. This variation was reflected in the four themes which emerged from my data, Doing, Puzzling, Structure and Staff. These themes encompass both internal individual process and the structural elements of the Cardiac Wellness Program - both aspects which played into the meaning of the program for patients. These four themes demonstrate that both patients and staff are active in carrying out the practices of cardiac rehabilitation, and that elemental to these practices are the meta-themes of Uncertainty and Order. In this section I will discuss my findings as they relate to the literature I have outlined, as well as to the frameworks set out by Wheatley (2006) and Mol (2002;2008). To conclude I will argue that the various meanings of cardiac rehabilitation to patients fall under the umbrella of a "logic of care" (Mol 2008). A logic which has at its core practical means of finding order in uncertain circumstances. 117 Uncertainty My results indicate that study participants expressed both a sense of unease or renewed confidence and vigour in their body. Those who lost trust in their bodies were unsure of what they could physically do without facing death. This type of insecurity is consistent with Wheatley's (2006) observations of heart patients who, in the wake of a heart event, had to reskill, that is, to learn to interpret their bodily sensations and signs in order to regain a sense of equanimity and trust in their bodies. Wheatley defines reskilling as a type of reflexivity that is rooted in the body. Success in reskilling involves gathering "productive" knowledge about the body through a sufficient amount of awareness and attention (Wheatley 2006:18). This gathering of knowledge occurs, Wheatley suggests, as patients take on the monitoring practices of the clinic into their own behaviour. Several participants in my study demonstrated how self-monitoring had helped them to improve on how they felt physically, how confident they were in exercise and the sense of control they had over their body. My data suggest, however that in addition to gaining "productive knowledge" from their bodies through self- monitoring practices, the very act of actually doing (getting on the treadmill even though they were worried that their heart could handle it) exercise or a stress test in the Cardiac Wellness Program was an equally important step in reskilling for some heart patients; these patients could learn what their bodies were capable of after their heart event by actively doing. The reskilling I observed was not only an individual but a collective effort; knowing that they would be hooked up to monitors and surrounded by trained health care providers helped some patients step onto the treadmill and take the stress test. It also subdued the fear that some participants confessed to having about starting an exercise program with a compromised heart. Feeling safe as a result of a monitoring staff presence was especially 118 important for those patients who had been told upon discharge that they should not exert themselves. As Wheatley (2006) suggests, patients who do not attend cardiac rehabilitation programs lose out on the opportunity to reskill or interpret bodily sensations within the context of a safe environment where they are monitored by trained staff. Those who do not attend might feel too afraid to test the limits of their body, and as a result step back from the activities they may have once loved to do, or engage in exercise for the benefit of their heart health. Concerns having to do with the body were not the only thing facing heart patients. Upon suffering a heart attack or receiving a CAD diagnosis, heart patients find themselves at a point where their lives are open to change. Fateful moments are "times when events come together in such a way that an individual stands, as it were, at a crossroads in his or her existence; or where a person learns of information with fateful consequences such as hearing the result of a medical test" (Giddens 1991:113; Wheatley 2006:4). Those who attend cardiac rehabilitation do so after living such fateful moments. Following such events, the participants in my study had different pre-occupations or areas of concern. One major question facing several participants in this study was whether or not they could return to a normal life. Some were more concerned than others about whether their lives would return to normal, and this concern was affected by how active they were in their lives beforehand, or whether they had been inhibited by symptoms. Participants like Cam wondered if they would be able to return to the activities that until that point had defined their lives. Other participants, like Ted and Josip, were looking forward to the changes in their lives - they were not so keen on returning to their lives as they were before the heart event because they felt so much better now and were looking forward to change. Participants wrestled with the ambiguity surrounding how 119 the consequences, good or bad, of their heart event would affect their lives just as Wheatley (2006) and Giddens (1991) suggest. Participants dwelled on what their heart event really meant (i.e., what changes it would elicit, or, what changes it would require on their part). The kind of ambiguity and concern patients experience following an event or diagnosis of diseases has been addressed in the literature in various ways. Relevant to my analysis is Mishel's (1988) theory on uncertainty in illness. Mishel (1988) describes how illness or disease brings with it "uncertainty concerning what will happen, what the consequences of an event are, and what the event means" (1988:225). This statement captures the uncertainty and questions (meaning making) participants expressed in interviews. I interpret the components of the themes Doing and Puzzling, such as insecurity in the body, questions about causal factors, and considering areas of change as revolving around the inherent uncertainty that accompanies illness as Mishel (1988) suggests. How success in meaning-making can alleviate uncertainty was demonstrated by Richard, who was the only participant in my sample to have lived with heart disease for a number of years. Richard expressed an attitude of acceptance and had already figured out what he could and could not do. He did not reflect the same type of angst as other participants who had just recently had their heart event, and though he brought up the same type of concerns, such as what he could do (i.e. go fly fishing deep in the wilderness away from medical help), he had worked out a framework of meaning which allowed him to continue do the things he loved in his life, despite having heart disease. Other aspects of my results suggest that new heart patients were at a particular moment in their lives (i.e. following a fateful moment) where they are grappling with uncertainty and searching for meaning. Study participants all had one thing in common - they all talked (though at different lengths) about what they reckoned was the cause of their heart problem. They searched their biographies and compared themselves to others as a way to make their heart problem intelligible, which concurs with the findings of Cowie's (1976) study of heart patients on a cardiac ward. Participants in the study reflected on their own life history and that of their family to come up with plausible causes and explanations for what happened to them. Kyle could not pin down a clear cause for his heart attack within the scope of his life history and was still wondering, after twelve weeks in the program, what had happened to him and how he should move forward. Rosenfeld and Gilkeson (2000) suggest that women often make sense of the cause of their heart attack by making comparisons with men. Marion's comments reflected this trend - she understood the cause of her dissection to be stress related because that was the message that she and her family had received regarding the aortal dissection her father had suffered years ago. My results show how uncertainty around, and concern with finding the cause of one's heart attack was shared across all participants. That finding a cause for one's disease is constitutive of a search for clarity and meaning as well as a part of finding composure amidst the uncertainty that comes with illness and disease is supported in the literature I consulted (Cowie 1976; Mishel 1988; Rosenfeld and Gilkeson 2000;Wheatley 2006). In the context of cardiac rehabilitation, health care providers also had to manage the ever-present difficulty of knowing the status and inner workings of a patient's body. The monitoring practices of the clinic pertained to these unknowns. Practices such as measuring blood pressure and pulse, for instance, served to provide a representation of how hard a patient's heart was working. Care providers used these representations to inform the judgement calls they had to make about whether or not it was safe for a patient to exercise. When problems arose, such as when a patient experienced symptoms of angina, monitoring 121 practices on the part of staff intensified. They asked more questions, took pulse and blood pressure readings, and when necessary, hooked patients up to a portable ECG machines. In addition to being the subject of staff monitoring practices and the source of uncertainty they had to dealt with, patients turned to the CWIC staff for answers about what caused their heart event. Sometimes, however, it was difficult for the health care providers (both within CWIC and in the larger hospital setting) to provide heart patients with the answers they were looking for regarding the cause of their heart event. In addition to the body's unpredictability and the limits of the representations provided by monitoring practices of the clinic, medical tests and criteria for diagnosis do not always add up with one another (Mol 2002). Sometimes the uncertainty that physicians and other health care providers had to deal with was a result of test results or practices not lining up as they should. Tests could contradict one another and the patients' bodily experiences. Uncertainty within medicine has been addressed in the literature in many ways. Renee Fox (1959) outlined how student physicians learn to negotiate uncertainty as either incomplete knowledge of medicine on the part of the individual or the limits of knowledge on the part of medical science. Mol (2002) shows how uncertainty is inherent all of the practices of the clinic. This uncertainty, Mol says, is a result of the fact that bodies and diseases (reality) are multiple. Mol (2002) suggests that medicine adapts to the uncertainty and contradictions by creating hierarchies wherein certain tests or expressions of disease will trump others. Take the case of Todd. Though he had several risk factors for heart disease (diabetes and obesity) he did not experience symptoms and would have learned of his disease if his employment did not require yearly medical screening. In this case, even though Todd did not experience changes, symptoms or limitations in his day to day life which might suggest disease, a stress test revealed decreased 122 blood flow (and therefore oxygen) to Todd's heart when he exercised. This test was enough to lead Todd and his physician to decide on an intervention (CABG surgery) for a disease that had never bothered Todd. The multiple nature of disease and the coordination that is required by professionals and patients alike regarding the kinds of information and representations of the body they gather serves to complicate the various factors which play into the diagnosis and treatment of disease. Medical tests in themselves, then, provide no concrete answers. They themselves come with a degree of uncertainty and health care providers must work with these multiplicities in helping patients understand their heart event. Not only do techniques of representation (medical tests) fail to be concrete in themselves, but neither are the values they produce. In another area of her work, Mol (2008) helps to make sense of the fluctuating nature of "normal," which also contributed to uncertainty in how patients experienced their disease. The concept of a "normal" range for heart disease risk factors such as blood pressure and blood cholesterol levels is problematic for several reasons. The first problem revolves around the fact that the nature of the cause of atherosclerosis involves not only "drivers" (risk factors) but also susceptibility. The unpredictable aspect lies on the "susceptibility" side of the equation for atherosclerosis. Individuals are unique in their susceptibility for heart disease. At base, the cause of atherosclerosis in a population cannot be determined with only the list of drivers. Individual susceptibility must be factored in, and therefore cannot be applied across a population. What is applied across the population is the "driving" side of the equation, and this may help to account for the confusion that some study participants and other CWIC patients reflected as they questioned why, despite landing within the "normal" range they should have a problem. As Mol (2008) suggests, "a sensible course of action and the normative acts relevant to it co- 123 constitute each other" (p. 45). As a result, Mol says, care practices are not linear. Health care providers and patients have to work together to identify target-values. They have to define normal based on what the body presents. The long list of potential contributing factors for heart disease and the complex and relative nature of the cause of atherosclerosis to each individual contribute to the complexity of the knot that heart patients who, as a process of shaping meaning and decreasing uncertainty, try to untangle. In addition to the complexity of factors contributing to uncertainty and barriers in the creation of meaning about their illness, the participants in this study did not reflect a shared understanding of their heart disease in religious or metaphoric terms, unlike those subjects represented in the anthropological literature on the meaning of the heart. By virtue of searching their biographies, comparing their own qualities to a list of norms, and being required to seek out and establish their own norms through care relationships, participants sought to develop an individually unique set of causes and understandings of their heart problem. Unlike the Sikh women interviewed by Mather et al. (2007), the participants I interviewed largely did not account for their heart problem via a shared meaning of heart distress as influenced by a religious text. A small group of participants considered stress to be the main cause of their heart attack, however they described this stress as being a product of individual decisions and personal aspects of their lifestyle such as the stress created by their role in the workplace or upsetting experiences they had had. One participant revealed that he felt his stress affected him mentally more than anything. Participants across my sample demonstrated relatively inconsistent preconceptions of what factors put a person at risk for heart disease, one of the only similarities among their perceptions was that they were not symbolic or metaphorical in nature. Instead, they used biomedical language and concepts to understand stress. Lewis, for instance, measured and understood stress as a change in blood pressure. As a corollary to this, participants did not speak about a need for finding religious or ritualistic interventions such as those described for healing peito aberto (Rebhun 1994) by tying the chest with a string or prescribing the singing of verses from the Quran (MacPhee 2003). When asked about stress, participants could all identify areas of difficulty in their lives, however they did not allude to holding their own emotional suffering or the suffering of others in their heart, as did the women of the Sikh community studied by Mather et al. (2007). The fact that participants did not have a shared meaning of heart distress or relay understandings of their heart in metaphoric, religious or symbolic terms may be a reason for the uncertainty patients felt and the preoccupation they demonstrated around piecing together an explanation for their current situation. Heart patients, in a plural society such as the one I studied, where biomedical explanations for disease are primary to understanding disease, are left on their own to create a distinct and unique meaning for themselves. In the next section I will demonstrate how individual patients, in conjunction with the structural elements of the Cardiac Wellness Program (protocol, staff) attempt to find answers, or, order. Order In this section I will use order as a way to address the responses to uncertainty expressed by both CWIC staff and patients in the Cardiac Wellness Program. The word "order" has multiple meanings. It can refer to habitual or customary procedures, to a command or instruction, to an organization of people united by a common bond or aim, and to a sequence or arrangement of successive entities, to name a few (Oxford English Dictionary). All of the above definitions can apply to the context of cardiac rehabilitation. By carrying out the practices of the clinic, staff, volunteers and patients follow habitual and customary 125 procedures as they perform the routine protocol of chart and heart rate monitor retrieval, check in with staff and so on. The patients at the Cardiac Wellness Program share the common bond of having had an issue and/or intervention with their heart (though these issues varied), and patients, staff and volunteers all, as a larger group or order, appeared to be working together in cooperation toward a common end. Patients at the clinic ordered themselves in relation to others by comparing and consulting with others in the program. Staff members and volunteers instructed patients on how to exercise safely with a heart condition, what to do when they arrived for exercise sessions, how to improve their diet and when and how to take their medications. Order, in its various meanings, encompasses responses to the uncertainty and unpredictability inherent in bodies and their diseases demonstrated by all those involved in cardiac rehabilitation. One way to define order is as an instruction or command. The Cardiac Wellness Program is optional to patients. Those who attend are, by virtue of their attendance, seeking orders to follow. My study participants chose to go to cardiac rehabilitation and consult what Mishel (1988) referred to as "credible authority" (which is one type of "structure provider") and Giddens (1991) refers to as "expert systems." My data show that seeking out expertise and following (though perhaps incompletely) orders was an aspect of helping participants' feelings of uncertainty. Participants in the program also received encouragement from staff to follow those orders. Upon signing up for the program, patients receive telephone numbers that will connect them to the main CWIC desk as well as members of their assigned care team. Staff who facilitated the Welcome Session and Nutritional and Wellness Orientation sessions encouraged patients to phone in with their questions at any time, which they could do within a two-year time period. As a result, patients had a means of accessing the benefits of health care 126 expertise which was relatively open (not restricted by appointment schedules), something which several study participants valued about the program. In this way, participants had open access to the orders staff impart - orders such as instructions and or suggestions on diet and exercise modifications, medication management and stress management that will, hopefully, benefit patients. These orders pertain to questions participants had about what was appropriate, safe, reasonable to do and experience as a post-cardiac patient. Orders, as an element of communication between health care providers and patients, help to answer unknowns about what to do and what to expect. CWIC staff and volunteers ordered patients by guiding them through how to carry out the exercise protocol. Exercise leaders, during orientation sessions, outline the steps patients are to follow at each exercise session. During the before-exercise check-ins, staff could ensure that patients had followed "orders" and had taken their medication two hours prior to exercising. By guiding patients and teaching them the proper steps both at exercise and in their daily lives, staff were integral elements of structure, or order of cardiac rehabilitation. The protocol that staff and volunteers taught patients to carry out illustrates another facet of order within the Cardiac Wellness Program. Order, as a customary or habitual practice, was manifest in the weekly structure and hourly protocol of the exercise sessions. That patients could count on following the same set of steps each time they arrived to do their exercise produced what Mishel (1988) would describe as "event familiarity" (p.226) in the health care environment. Event familiarity, within Mishel's (1988) model was one aspect of a patient's experiences of illness which determined the level of uncertainty he or she might experience. The routine and structured protocol of the cardiac rehabilitation exercise sessions was something that participants could rely on. It useful in creating a sense of accountability - 127 knowing they would be checking in with staff motivated some participants to keep up with exercise on their own (as in Marion's case), and also provided a sense of security of knowing what to expect and that a trained health care professional would be there to answer questions and inquire about their wellbeing (as Bruce mentioned). Order, as a structured protocol, by providing regular, reliable and familiar experiences for heart patients (event familiarity) afforded a means of experiencing order in the new and unfamiliar territory of being a person with a heart problem. The order, or protocol of the clinic was also useful to those patients, like Ted, who did not express a high level of uncertainty. Ted's heart attack, as a fateful moment, opened his life up to the possibility of change for the better, as he stated. This possibility for change, though, embodies a point at which the balance can tip in any direction. The Cardiac Wellness Program was important to Ted because, as he said, it was getting him into a healthy routine. By doing order, as a routine set of practices, Ted felt he was able to tip the balance in the direction of change. Order, as a set of customary practices, helped to provide participants with reference points within which they could orient themselves. Roth (1963) argued that searching for or creating reference points was a way that TB patients38 dealt with the chronic uncertainty of how long they would be required to stay in hospital. The patients he studied created timetables as ways of creating structure around a hospital stay that threatens to be endless. Though the patients I studied were not confined to a hospital bed for an indefinite amount of time, they did face, as I have outline above, other types of uncertainty regarding their situation. For participants who were unsure of how active they could be, the specific exercise protocol they 38 Roth (1963) extends his analysis to show how reference points (specifically in this case timetables) can apply to other situations outside of the hospital. 128 were required to follow in the Cardiac Wellness Program helped to provide the type of reference points Roth describes. Treadmills and exercise bicycles are designed in such a way that heart patients could adjust and keep a record of the tension level, speed, and time they spent while on the machine while observing their heart rate and monitoring their bodily sensations accordingly. The exercise protocol and the context in which patients carried it out, then, provided a way to structure something as vague and diffuse as what a safe level of physical activity might be for a patient. Having observable points (time, heart rate, level of incline) that participants could translate into knowable physical limits both within cardiac rehabilitation and in their lives abroad, helped to increase, for some, their confidence. Participants used reference points (Roth 1963) as a way to place themselves in sequential order relative to other patients. As another manifestation of order, reference points provided a set of points within which participants could sequence themselves. Participants sought out these reference points in various ways - some placed emphasis on the ability to share stories and evaluate their situation in relation to that of others in the program. Others created a frame of reference by using the information they gathered through new self- monitoring techniques they had learned. Others still remarked on how they used the 12-week stress test as a point on the horizon to which they oriented themselves. Finding these frames of reference involved interplay between inner sensations and perceptions and external reference points. Comparison with others, for instance, allowed patients to be part of a group but also draw boundaries or definitions around their own situation. Irene stated that she did not know how sick she was after her heart attack because she had not known anyone who had had a heart attack before. To understand how ill she was, Irene needed to compare herself to others who had also had a heart attack. The Cardiac Wellness Program was helpful in this regard 129 because it was a setting where individuals are exposed to other heart patients.39 This finding overlaps with Cowie's (1976) work where he found that heart patients compared with others to understand the cause of their heart event. The participants in my study used comparisons in this way, however they also made use of comparisons to others to understand the severity of their illness and, I argue, place themselves along a continuum of reference points. Participants ordered themselves relative to the other patients in the program according to different criteria, which often had to do with what participants thought was the most significant aspects of their situation. Josip, for instance, contemplated the kind of intervention he had received (CABG) compared to others. Patrick, on the other hand was concerned about depression and said he was pleased to know others in the program also had feelings of depression though perhaps not to the same extent. Being in a common setting with other heart patients was not only useful to study participants as a way of finding points of reference, but also as a way of belonging to a group. A final way to define order as relative to my analysis is as a group of people with a common bond or aim. Although the majority of my study participants spoke of the significance they placed on the ability and time they had with the CWIC staff to answer their questions, it was also important to some of my participants to be able to communicate their experiences as a heart patient with others who were in a similar situation. Participants placed varying levels of importance on the presence of others who also suffered a problem with their heart. For some, however, it was a very important aspect of their experience in the program. These participants found reassurance in being in an environment with other heart patients who, though they might have undergone different interventions or suffered different conditions, were going 39 Especially now that advances in technology and less invasive intervention options mean that heart patients most likely spend less time in the hospital than those that Cowie studied in the 1970s. 130 through relatively the same experience. In addition, having the opportunity to share their story with other patients was important to participants like Dennis who said it was a useful way to learn how about others' means of coping. Kyle's suggestion for creating small groups of like- participants (categorized according to age) within the program who could gather and share their stories and questions also demonstrates this importance. My results therefore suggest that not only do patients, in the face of uncertainty following a fateful moment, consult expert systems and sources of credible authority, they also find value in consulting with others who are in a similar situation though not necessarily experts on the subject. Fox (1959) demonstrated how physicians in the Metabolic Group talked over the scenarios of their work (such as research projects and difficult to treat patients) and the many questions that these physicians had to navigate. Fox (1959) suggests this was an important aspect of coping with a job which involved so much uncertainty. Though these conversations may not have provided any clear answers to the problems and unknowns they dealt with day to day on the hospital research ward, the physicians found value in simply hashing things over with one another. The existence of an order or group of people with a common aim was manifested in the Cardiac Wellness Program as not only a group of patients who shared the bond of having a difficulty with their heart, but also as a larger group made up of staff, volunteers and patients alike. As a group, these individuals, though they played different roles, had in common the aim of extending and improving the life of those individuals suffering from both acute and chronic heart problems. Volunteers guided patients through the steps of the check-in procedure and provided encouragement to them when they looked bewildered or unsure. Staff answered patients' questions and checked on them during their exercise to ensure they were doing fine, and provided pointers and recommendations to patients about things they may try 131 at home or within the parameters of their exercise program to render it more effective. That participants like Owen felt they were not "told what to do as much as advised on a friendly basis" by the staff suggests that both patients and staff were working toward a common end. Owen, as stated in my results, commented that what he would miss the most about cardiac rehabilitation is the "association with the people." Participants talked about how staff were patient and friendly with their questions and were always there to help; the friendly manner of staff generated a sense of alliance which participants valued. These comments, I argue, reflect a social group whose members are working together to fulfill a common aim of ameliorating the signs and symptoms of heart disease in patients living in the wake of acute events and interventions. This interpretation of the data, as the network of people in the cardiac rehabilitation clinic as a group sharing a common aim, diverges from the interpretation Wheatley (2006) makes of the cardiac rehabilitation clinic. She focuses her analysis of cardiac rehabilitation on the political character of the clinic's practices. Wheatley (2006) argues, after Foucault (1977) that medicine, as a social power, has as its aim the normalization of deviant (diseased) bodies so as to maintain the health of the population and not jeopardize its production capacity. Medical practices turn individuals into "cardiac cases" by way of surveillance technologies (Wheatley 2006). She classifies medicine and its practices as exerting power over the bodies of the population. This exertion of power is not complete, she argues, because patients develop individual ways or "transgressive manoeuvres" to push back against or evade the complete domination of medicine over their bodies and their experience with illness. The power relationship between health care providers and heart patients, as she describes it, is therefore, at base, an antagonistic one. 132 As Mol (2008) suggests, however, there is a logic to care that does not have to resort to supposedly latent power relations. A logic that embraces the uncertainty inherent in both disease and the best course of action toward proper care of the disease. The cooperation I observed among staff, volunteers, and patients is more representative, I argue, of the notion of a "logic of care" (Mol 2008). This logic of care refers simply to what is practical to do in order to improve and extend the lives of individuals with disease. Mol uses the word doctoring to refer to a fundament aspect of the logic of care which "involves the entire care team," and "is not about who is in charge but whether or not the various activities involved are well attuned to one another" (Mol 2008:45). Doctoring, in this sense, is like "tinkering" (p.56); patients and health care providers actively seek, by trial and error, solutions to the various problems disease presents in the lives of individuals. Doctoring, as a mode of care, does not rule out tensions or difficulties - patients and care providers may not always agree on what is possible or the best course of action, and care providers have the hard task of breaking difficult news to patients - however it suggests a mutual respect between the two sides40 (Mol 2008). Uncertainty, Order and the Logic of Care In the above two sections I discuss uncertainty and order as fundamental aspects to the meaning participants held around the Cardiac Wellness Program. I have outlined the how questions about doing, searching for causes and considering change after a heart event reflected the uncertainty faced by individuals who have recently experienced a heart event or fateful moment. I have also demonstrated different facets of uncertainty which seep into the 40 Both sides may demonstrate respect for one another even within an antagonistic relationship involving an exertion of power. I focus here on the difference between forces acting together or in opposition. Wheatley, following Foucault, does point out that the power exerted by medicine is not necessarily repressive, that it can have positive and productive outcomes (Wheatley 2006:113). 133 practices of health care providers. Practices which, through creating representations of the body and through a set protocol, attempt to provide structure and order and inform the best course of action for patients through the steps of Cardiac Wellness Program and beyond into their individual lives. I have suggested that the practices and goals of cardiac rehabilitation are shared between patients and staff. In what follows I will discuss how all of the orders of the Cardiac Wellness Program are pieces which fit into an overarching logic of care (Mol 2008). Mol (2008) describes care as being a "matter of time" (p.18). As a process which does not have clear boundaries but involves an interchange of activities on the part of a team of individuals (patients and health care providers within numerous roles) all working toward the same end result - a prolonged and improved life with heart disease.41 Study participants' appreciation for the open access they had to asking their care team questions and that they could do so during a two year time frame, along with their regular access to nurses and exercise specialists who could answer their questions fits with this aspect of the logic of care. Through regular interaction, care as an interchange of actions between patients and staff as a team was possible. Mol (2008) also suggests that the process of care is non-linear; that ends or desired results themselves (how much and what type of exercise is possible, for instance) can change as patients and care providers sort out what is practical and possible for patients to do in caring for themselves (Mol 2008). My results showed that within the structured protocol of the clinic, staff monitoring practices were flexible - staff adjusted the protocol to fit with what patients presented. My results also showed how the relative nature of normal values requires 41 This "improvement," based on my data, could be considered as the renewed sense of confidence and equanimity patients may achieve through gaining knowledge and skills around how best to live with heart disease. Part of which is understanding what their disease means. 134 that each patient may be working towards achieving different target-values for things such as the amount of triglycerides in their blood. Good care, in Mol's (2008) terms, requires fluidity and openness to amendment or modifications on the part of the entire team. The physician who talked about changing the target-value of blood cholesterol levels he aims for in any given patient will change depending on the patient's particular case, reflects this aspect of the ideal of care that Mol (2008) lays out. Another aspect of care outlined by Mol (2008) is that the different tasks patients and staff contribute to the mix will shift over time. Diabetes patients may have the nurse test their blood sugar and inject insulin when they are newly diagnosed, however they themselves must learn these tasks and carry them out on their own (Mol 2008). Though heart disease patients do not have such frequent and technical tasks to carry out as part of their life with disease (though many heart disease patients also have diabetes), one aim of cardiac rehabilitation is to raise patients' knowledge and awareness so that they may carry out exercise and other heart healthy behaviours in their lives outside of CWIC. Through learning different ways of self- monitoring (counting calories, measuring blood pressure, for example) my results demonstrate how participants in my study reflected this shift in tasks. That participants remarked upon the benefit they felt they gained from such active engagement supports the idea that within a logic of care (what makes sense to do and constitutes good care), patients are made and/or allowed to be active. Indeed, the logic of care that Mol (2008) describes shows patients as active, not passive. They work at care as much as health care providers do. They are not simply bodies being subjected to shifting discourses of medicine (Wheatley 2006), but are essential agents in determining what type of care they receive. Individuals who choose to attend cardiac 135 rehabilitation choose to be active agents in dealing with their heart problem. They choose to enter a realm of care. As my results show, study participants were active in their care. They consulted with care providers who have expertise in heart health (and disease), stepped past their fear onto a treadmill to test the strength of their heart, engaged with and looked outward to others to orient themselves and create frames of reference, and took on whatever monitoring practices would be helpful in not only living well with disease but in improving or changing lifestyle habits. They also puzzled about what caused their disease, considered what they could change. In this way they attended to their uncertainty by engaging in care. A care which, as Mol (2008) suggests, is open-ended and without boundaries. That the care patients receive (take part in) in the Cardiac Wellness Program is an open-ended attempt at finding order and a sense of equanimity which involves a specialized team as well as specialized equipment, may help to account for the disappointment some patients express about having to leave the program. Though they have access to individual consultations and education classes for two years, they are no longer part of the network of individuals and materials that made up the exercise programs. They are no longer part of a network of care. This network, which facilitates good care, I conclude, is the meaning of the cardiac rehabilitation to patients. Conclusions In the preceding sections of this thesis, I have illustrated how participants' comments about the meaningful aspects of the Cardiac Wellness Program, though varied, have reflected various aspects of care, and have hinged upon uncertainty, or a lack of bearings and meaning. They have also centered on order, or the active expression of structure and orientation. To conclude I will discuss the limitations of my study as well as illustrate the implications of my 136 research which may be constructive to cardiac rehabilitation programs as well as future anthropological research. The findings I present in this thesis are representative of heart patients who chose to attend cardiac rehabilitation programs. Whether or not patients who do not attend cardiac rehabilitation would express the same amount or types of uncertainty cannot be determined from this study. It is unclear whether, for example, patients who experience more uncertainty (in the variety of areas I have illustrated) are those who choose to attend cardiac rehabilitation programs. My study sample was relatively small and consisted of five times the amount of men as it did women. Women were more difficult to recruit. My research, therefore, cannot speak to any difference in the meaning of the program to patients of different genders, and is limited in terms of its ability to produce creditable generalisations. Finally, I carried out research at only one cardiac rehabilitation clinic, though many exist across the country, which also limits the types of generalisations this research generates for cardiac rehabilitation clinics in general. For example, the hiring practices specific to the Cardiac Wellness Institute of Calgary (i.e. what they look for in staff members who will be providing care to patients) may influence my results (i.e. that participants found the staff to be friendly and patient) as being locally specific. The implications of this research, specific to cardiac rehabilitation programs, apply to the area of referral to cardiac rehabilitation as well as how non-exercise aspects of the program may be carried out. The manner in which physicians refer patients to cardiac rehabilitation programs has a large impact on the patient's decision to attend (Jackson et al. 2005). The results of this study can be applied to the kind of information physicians give to prospective patients about the potential benefits of the program. Applying the finding that the 137 cardiac rehabilitation program has the capability to improve the confidence level of those individuals who are worried after their heart event, for instance, can help to inform the referral process and as a result improve attendance rates. Patients who are considering the program may hold the view that the program only offers information and guidance in the area of diet and exercise. Although these two things are indeed major goals of the program, my results show that Cardiac Wellness participants, in considering what the program meant to them, talked about benefits beyond these foci such as regaining confidence, finding structure and routine, and being part of an association of people who are either undergoing a similar ordeal (which is reassuring) or who can provide them with answers to the many questions they have (which is also reassuring). Considering these findings, physicians may do well to consider incorporating these potential benefits of the program into the referral they provide. The results and analysis I have presented center largely on the exercise component of the Cardiac Wellness Program rather than other aspects available to patients such as courses and individual consultations on diet and stress management. That my participants comments and my analysis were thus focused speaks to the importance and prevalence of the exercise program to patients and their reflections on the program. Indeed, it was during the exercise sessions that participants were most active in their care. It was at these sessions that they interacted and engaged most with staff, recorded information in their chart, saw and spoke with other heart patients. They moved, asked, sweated, recorded, compared. Patients, who wondered what they could do, found their answer by actually doing. They stepped onto the treadmill and started walking, despite their fears. I argue, therefore, that it is meaningful to heart patients to be active in their care; when circumstances allow and invite patients to be so active, care seems to be at its best. One resulting implication from this is that care within 138 cardiac rehabilitation may be improved by designing programs such that patients may be active within them. Areas outside of the exercise component such as the educational courses on diet might involve a component where patients do heart healthy cooking in a cooking class, for example. My results and analysis also show the variation of interpretation that can arise out of ethnographic research. Elizabeth Wheatley (2006), in her ethnography of heart disease produced an interpretation of the cardiac rehabilitation clinic as a site which embodies the power dynamics of modern medicine and the ways in which it creates and manipulates, through discursive and surveillance practices, bodies and disease. Wheatley drew from the work of Michel Foucault to shape her interpretation thus. I, on the other hand, drew from the work of Annemarie Mol to guide my interpretation and suggest that the social dynamic and driving factors for behaviour and meaning were based around a common aim and cooperation in attempting order within the clinic and the lives of heart disease patients. Many factors can help to account for our differing interpretations - the amount of time spent in the field (two years vs. a few months), the greater political and cultural environment in which the cardiac rehabilitation clinic was situated (USA vs. Canada) and even perhaps that different authors inspired us (Foucault vs. Mol). I took away from Wheatley's work not only a springboard for a different view but helpful areas of overlap - Wheatley's ethnography informed my own and provided me with concepts, such as reskilling, that helped me to make sense of my data. Her arguments were something I could hold my own data up to for comparison - to see how they fit. Her ethnography provided, for me, a reference point. I suggest, therefore, that more ethnographic studies of cardiac rehabilitation, within anthropology, would be useful. Pressure to research that which has not been studied before 139 leaves already-studied areas covered by only one interpretation. Multiple ethnographic studies on a single topic would produce a tighter set of reference points (though it would not exclude using references from farther afield) to which ethnographers may orient their data. Ideally, this would result in multiple representations of the same social phenomenon, such as cardiac rehabilitation, which then we could coordinate. Our understanding in the social sciences would be multiple. As such, the very corpus of research texts we produce would reflect the multiple nature of reality. 140 REFERENCES Ades, Philip. 2001 Cardiac Rehabilitation and the Secondary Prevention of Coronary Heart Disease. New England Journal of Medicine 345(12):892-902 American Heart Association 2011 Invasive Tests and Procedures. 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Registered Nurses 4.3 Perform medical monitoring and tests during exercise sessions, teach risk factor review class, conduct one-on-one consultations with EDC patients, refer patients to doctor appointments, act as an assigned contact point for patients. Exercise Specialists 7 Calculate target heart-rate, teach education classes, perform monitoring during exercise, act as an assigned contact point for patients. Exercise Leaders 1.4 Monitor and do follow-up during exercise sessions, perform first-day orientations for new patients. Registered dieticians 2.8 Teach nutritional and weight-loss education classes, conduct one-on- one nutritional counselling with patients. Administrative Support Staff 7 Administrative duties Referral Co-ordinator 0.6 Clinical Research Co-ordinator 1 Program Manager 1 f These were the staff numbers during the time of my fieldwork as provided to me by the program manager. •These are the roles as I observed them. 147 APPENDIX B: EDUCATIONAL CLASSES OFFERED AT CWIC Course Length Focus Fats & Fibre One 2-hour session Addresses oils, fats, cooking oils, omega fats, butter/margarine, soluble fibre vs. insoluble fibre to help reduce blood cholesterol levels. DASH to Lower Blood Pressure One 2-hour session Teaches the DASH diet, which is specific to lowering blood pressure. It is a holistic dietary plan which covers more than simply reducing salt intake. Eating Out & On the Go One 2-hour session Provides tips on how to be heart healthy while eating out. Examines restaurant menus and signals things to watch out for. Shop Smart for Your Heart One 2-hour session Patients learn to decode the Grocery Store Tour "Nutrition Facts Table" on food packages and what to look for in order to choose a heart-healthy product. You and Your Medications One 2-hour session Covers the purpose, function and mechanism of medications patients are on. Provides a forum for patient questions about their medications. Risk Factor Review One 2-hour session Describes and explains the risk factors for heart disease and how to manage them for better health. Routes to Relaxation Series Four 2-hour sessions Teaches relaxations strategies and tips on how to identify and overcome potential barriers to relaxation. Stress Management Series Four 2-hour sessions Helps patients identify the stresses in their lives and provides skills to manage stress. Emphasis placed on relationship between stress and heart disease. Next Step Workshop One 1.5-hour session Addresses the transition from exercising at CWIC to exercising at home/at the gym. Helps patients identify barriers and devise strategies to overcome these barriers. Provides a forum for patients' questions about what activities are safe for them to do. 148 APPENDIX C: Ethics Documents I 1JU !IIV« « I'NJVIRMli <>i MEDICINE CALGARY OFFICE OF MEDICAL BIOETHICS Room 93. Heritage Medical Research Bldg 2010-06-18 3330 Hospital Drive NW Calgary. AB, Canada T2N 4N1 Dr. Charles Mather Telephone: (403) 220-7990 Social Sciences/ Anthropology/ Fax: (403) 283-6524 Sociocultural Email: [email protected] University of Calgary Dear Dr. Mather: RE: Understanding the Meaning of Cardiac Rehabilitation to Patients Ethics ID: E-23173 Student: Ms. Sarah Sandham The above-noted proposal including the Consent Form (Staff, version A. April 15, 2010: Patients-Observations, version A. April 15. 2010; Patients-Interviews, version A. April 15.2010 ). Letter of Support (Dr. James Stone. November 6. 2009. unsigned ). Poster. form (Kxample of Potential Study Questions for Unstructured Interviews of CWIC Participants; Sample Demographic Information Sheet. Patients and Staff). Protocol (April 14,2010 ). Funding Confirmation Letter (May 13. 2010, and email. May 5.2010) has been submitted for Hoard review and found to be ethicall) acceptable. Please note that this approval is subject to the following conditions: (1) appropriate procedures for consent for access to identified health information have been approved; (2) a copy of the informed consent tbrm must have been given to each research subject, if required for this study: (3) a Progress Report must he submitted by June 18,2011. containing the following information: i) the number of subjects recruited; ii) a description of am protocol modification; any unusual and Please npteitratsYou have been named as the principal collaborator on this study because students are not permitted to serve as principal invesKgalors. Please accept the Board's best wishes for success in your research. Yoms sincerely.. hD Acting Chair. Conjoint Health Research Ethics Board SP/jlm c.c. Ms. Gladys Glowacki (Health Records) Ms. Donna McDonald (RTA) Dr. Mary Pavelka (information) Research Services Ms. Sarah Sandham (Student) Marta Cyperling (Communications) Office of Information & Privacy Commissioner C»C*T*aT"L JALTH 149 § FACULTY OF | UNIVERSITY OF MEDICINE ! CALGARY July 26, 2011 OFFICE OF MEDICAL SIOETHICS floom 93, Heritage Medical Research Btdg 3330 Hospital Drive NW Calgary, AB, Canada T2N 4N1 Dr. Charles Mather Social Sciences/ Anthropology/ Telephone: (4031 220-7990 Sociocultural Fa*: (403) 283-8524 Email. ombeucalgary.ca Room 826, Social Sciences Building University of Calgary Calgary, Alberta Dear Or. Mather: RE: UndwsUindino the Meaning of Cardiac Behabilitation to Patianta Ethics ID: 23173 Your request to modify the above-named protocol has been reviewed and approved. i am pleased to advise you that it is permissible for you to increase the sample size from n*t 0 - 15 (as stated in your proposal) to n*25, based on the information contained in your correspondence dated June 23, 2011. I am pleased to advise you that it is permissible for you to request permission for the modification from the smaHer sample size to the larger one to aflcw inclusion of more participants representative of different points along the cardiac rehabilitation timeline, based on the information contained in your correspondence dated June 23, 2011. We note that the original approval for your sample was to interview a smaller number of participants several times during their enrollment rn the cardiac rehabilitation program. Due to thetime constraints of Ms. Saftdham s master's program a»xl the amendment to your recruitment method, participants coufd only be interviewed once. A progress report concerning this study is required annually, from the date of the original approval (2010-06-18). The report should contain «! information concerning; ^ (i) the number of subjects recruited; (»i) a description of any protocol modification; (iii) any unusual anchor severe complications, adverse events or unanticipated problems involving risks to subjects or others, withdrawal of subjects from the -a&aarch, or complaints about the research. (iv) a summary of any recent literature, finding, or other relevant information, especially ^formation about risks associated wirh the ^search; I (v) a copy of the current informed consent form; (v»> the expected date of ten-ninafson of this project: '• Thank you for the attention which I know you wiH bnng to these matters. Yours stfcerety. \ c:rZ {'S?acey A. Page.ThO Acting .Chaix,.C6n{oif^ Health Research Eihics Board SAPcw ; c.c. Ms. Sarah D. Sandham 150 CONJOMT HEALTH RESEARCH ETHICS BOARD Form 6: ANNUAL REPORT AND RENEWAL FORM, Venton Jura 2008 f. l»rmi«a>acnn*gon only for the 12 men—tawwdtaMy prior tncuwiuniMvatMry date. I Da not •gyptfi data tint* atartaf^tudy unl— apuHlcaliy wpquaotarf I- Dp not NBtuita iiniyft npi— of amm MM—tfcnw 4 8ufca»>il«ut»oi*:aa>toj 9- »Ot»i«t #n» to md 4IW«m Ifi »» AurwM RapOft f. torinaMaaimi •"* »tntw*a an awtanwllc ra«pon»t tec »aur wcarta T- MSSMBWMijHDUUW<>MnMTM>fariMtowu|>ir(«qilMwMtt>9«wMng*9m Ofltea of MMtatl BioaMiica omfaOucalgafy ca Htrftaga Medial RMMrch BufldinglRooni B3 EmailicmbQueiiijanr at: Telephone (4039 230-7990; Fac (403^ 289-892* Ethics 10* Anrriveraary Oao: WWII 23173 immm _ frlla.** ttgft) a j Cowpiate Haaaaroh Protocol nut: 1 Urafenrtamilng the Meaning ef Cardiac RtfipWtftatfon lo Patfenta Principal bwMtigatorT Slgnatura: Dr. Chaitea Mathor (Supervisor) Data: Jvm 20 2ttt Coordinator: Signature: Sarah Sandham (MA studenQ Oale: June 202911 TaJaBtiona: <483) 771-3973 i Within the current mwdngiwiM: 1. Has the research protocol ooaad !o accrual? * Yea oNo ry«, when was it doeed to accrual? Date (DD/MMrtY): t~\ Jtx lH— 2. Has th« research ptotoool doaad to foBow-up? oVas x No IT yes, wtmn was « ClOMd 10 (ollowr-up? Dale (DWMMrYV): Total m/mber of *uty<^cii Mow-up. Ngmter 3. Hat this Kudycompfeeiycloeed to all research ectivhy? oYes xNo i If 30. whan was tha study complately dceedV Data (DCWWYY): 5. ff she study is conhmilng. what ie the expectad and dale: Date (MWYY) mil 6. HOwmany aubjecbdklyou axpaet to accrue? Number 10 7 Haveal mcdWcatkmt bean r&portadi x Yaa o No „ {If no, OJMacf Weoffice immediately) a. Have aH compfcatons bean MparUd? *Yea o Mo - (If no, contact affitov irrvnedMn^l 9. Have afl adverse wents been reported? XYaa oNo " (ifno, cctntad ffw office trmedietaW 10. Have any sutyaetwRhdrawn? o Yaa nblo—T._ ff yes, ho* many Number • - .... Komi 6 Annual Report, Vernon June 2008 \ 1 v)f2 151 11. Number of subjects in [Mt 12 months accrued by age and gender 40* vmar* 1 0-<1 i 1-<* | i.*12 tl*TS IMS >te Nombrr afHstm I'll 11 a Number at Fmmahi 1 f 5 i _ -I ANONYMOUS DATA COLLECTION If your research method required anonymity, so lhal study subject* cannot be categorized by genol*" or age, check appropriate to*; Anonymous: o V<» x No AND provide 9 total count of the r umber of subjects accrued into the ttudy in the reporting period. ^ v f n»jo-6 Total Summaries f cckAto-v^ 12. Total number of subjects accrued since start of study: Number ££ v^tfevr^Wi^- 13. Total number of subjects wfrdrewn since start of study: Number: • M. ^— M. Have them been any complaints? 0 Y«6 3| No (If ye*, pteese proirfcte uu-Ms) 13. Have Vie results been published/presented? o Yes x No (Jfyw, please prowd» details) Thank you vary much for the progreee report on mil protocol. Ac Chair of the Conjoint Health Research ethics Board of the Faculty of Medicine, University of Calgary, and Ida Affiliated Teaching jrystltulignsU am pleased Hi advise you that ethical approval tor this proposal hs* been extended to J i >^ci g-piease note that this approval is contingent upon strict adherence to Vw original protocol, Prior perrnRMMon must be otatarned from the Board for any ocntempfcted HMdlflcatlon(s) of IheoriglnaJ protocol. - ,<*/&> , A ptugrrse report concerning this study vrfi be required by •* •' This requeet received ful Boars approval on J1^ "f-yZ- ' X l - GlenyiCodfawitch. BA cc: Research Assistant/Coordinator • AdulVChild Health Research Commute* • Department Heed > Research Services Form 6 Annuel Report, Version June. 2 T 'r; 2 .v4i( mkiys 9 ;tcF\ » 11 ^ ew si Ufv oil •*i su h r' m9 'VvWC •f> fci i- 1 o; 5 :- * *- a * 0 srm r—wri Figure 1. Physical Layout and Observation Posts at Cardel Place n # ;i. m-H^P 1000 rti fe.miur.f Bi Ifo & 0op^ T®FT """ 4—t T f Vs* ft V- 0^ o 5 saixumaaL tMfll miM 0u ofii 1 imsi 5 W] @ iW. W»¥WI"H jW'-IU1*' i* 0 0 0 13 E»t! ! at * «.** JS h ^ &« Figure 2. Physical Layout and Observations Posts of World Health Club APPENDIX E: EXAMPLE OF ANALYTICAL FACE SHEET Point in Marital Education Pseudonym Age Education Event Intervention Program Status Classes Timeline "Name" 53 High School Single MI Stent 8 Weeks No Well the fact that it's a structured program which gives you the confidence and the infor- the um, the knowledge that you can do physical and cardio work over a long period of time, and the heart is strong enough to rebound, and ah just to be able to go on, to go on with a normal life. The fact that you can actually do an hour of exercise, work up a sweat, get the heart rate up Meaning of Program there, and all's well. So from that 1 can take it into my regular life, my work life and my home life and know that 1 can go on. 1 will have a life after the fact And I'm sure that's basically what most people need. Is the encouragement and the knowledge that they can go on with a regular life. They don't have to sit at home and not do anything which is the old style. Sit around and don't do anything! So, do me it was basically yes you are getting in shape, it's giving you the ah, what your body needs, but it's giving you the confidence to go on. And knowing that you can have a normal life afterwards. AS long as you follow what you should do. So it's just it gives you the confidence that you can go on. You can have a normal life after the fact. And as long as people are getting the exercise and as long as they're following it after the fact and continue it for the next, for years and years afterwards. I guess they're heart will be, will e fine.... That's why I said for me it gave me the confidence that 1 can do it, that I can keep doing what I used to do. And get back to it as 1 should have been doing for a time. Now I'm realizing that ok, now I have to watch what I eat 1 have to do the exercise and I actually enjoy it and want to get back to it. I'm looking forward to doing the exercise, cause I'm always looking forward to stepping a little past the boundary and going a little further each time. Increasing the length of time, increasing my heart rate slowly, increasing the work load. And just getting, just going that much further. So that 1 feel comfortable doing everything that I used to do. And now I used to cross country ski seven hours at a time, you know our loop it's 60kms of cross country skiing. Bike racing where we'd start at Lake Louise and go to Jasper.... P: And after the heart attack, you sort of worry - can I do that again? And this program gives you the confidence and the ability. Because you are getting back in shape. To actually realize that yeah maybe I can't do all of that to the fiill extent but 1 can still do a good portion and enjoy it. And not have to worry that I'm going to fall over. Somewhere down the road. Summary Points - Hasn't done the exercise and diet stuff because he works and he lives in Airdrie so the access is difficult for him -He feels responsible as the oldest son to help his mom and he is also paying his girlfriend's bills -He eats well and it surprised everyone at work because he was the healthiest one there -He likes the program because it gives you the confidence back to know ok you can do this. You can get back to a normal life. -Also the figuring out stage thing came in here because he said everything is explained to you really well by the doctors and nurses and so it is really reassuring. -Staff monitoring as well - safety net, not going to drop dead. -Impressed by the number of staff present at exercise -One of the major factors for him was his sleep apnia which can apparently contribute to heart attack. -At work his fellow co workers said they reasoned out his heart attack because he never asks for help ("the rock?") and he always would do things by himself 155 APPENDIX F: TABULATION OF THEME EXPRESSIONS Table 1. Expressions* by Participant for Theme 1: Doing Total Expressions Participant Used to Sick Rules to Aysical Msgs Life Certain Limit Improving Co-Morbid do Level Improve Treadmill Maurice 26 1 1 3 8 2 5 6 Cam 17 4 3 5 1 2 3 Todd 17 1 5 6vld 3 1 1 Lewis 14 2 3 3 1 4 1 Christoper 12 1 5 3 1 lvld Kyle 11 1 4 3 2 2 Vol. Hans 9 3 4 2 Ted 9 1 1 1 5vld Vol. Betty 8 1 5 1 1 Dennis 6 1 2 4 2 Richard 6 2 1 1 1 1 Norma 5 4 1 Owen 4 1 1 1 Patrick 3 2 Jo sip 3 4 1 1 Bruce 2 2 Victoria 2 1 1 Marion 2 2 Vol. Irene 1 1 Bekele N= N=6 N=5 N=15 N=3 N=9 N=5 N=3 N=8 N=3 N=!0 Total 165 Exoressions 14 12 45 9 22 15 7 15 6 20 * Where v = volunteered expression and d = directed expression for Tables 1-4 Table 2. Expressions by Participant for Theme 2: Puzzling Tests, Events, Total Why, Comparing Considering Participant Doc/Nurse Symptoms, Stress Expressions What lo Others Changes Msgs Mechanisms 33 Kyie 4 4 4 2v 9 10 16 Patrick 4 4v 1 / 15 Lewis 4 1 2vld 1 6 14 Marion 1 2v 4 7 13 Owen 2 1 10 11 Victoria 2 3 1 lv 1 3 10 Christopher 2 2d 1 5 10 Ted 1 ld2v 6 9 Cam 3 1 ldlv 3 9 Dennis 1 1 Id 3 3 9 Josip 1 8 8 Todd 1 2 2 ld2v 8 Richard 1 Id 6 8 Vol. Betty 1 3 4 8 Bruce 2 Id 1 4 5 Bekde 5 5 Vol. Irene 1 1 1 2 4 Vol Hans 2 2 2 Norma Id 1 1 Maurice 1 N= N=12 N=8 N=5 N=12 N=14 N=19 Total 198 Expressions 27 15 9 23 32 95 Table 3. Expressions by Participant for Theme 3: Structure Monitoring Monitoring/ Monitoring' Protocol/ Protocol/ Total Monitoring/ Reassurance, Gov. Or Accountability. Participant Self- Practices Exercise Expressions Materials Staff Med. Routine Monitoring ofClinic Definition Presence Screening 7 23 Lewis 3 1 7 4 ! 1 13 Josip 1 1 3 2 11 Maurice 3 2 4 2 10 Todd 1 1 4 1 3 8 Vol. Betty 4 3 1 8 Kyle 2 to 1 1 2 ? Norma 1 2 2 1 1 Victoria 2 1 4 y Owen 3 1 1 2 7 Vol. Irene 3 1 2 1 6 Marion 1 2 3 5 Richard 2 I 2 4 Cam 1 3 4 Ted 1 3 4 Vol. Hans 1 2 1 3 Bekele 1 1 1 3 Patrick 2 1 3 Deuuis 1 1 1 3 Christopher 1 3 2 Bruce 1 1 N= N=5 N=16 N=7 N=12 N=2 N=ll N=13 Total 136 Expressions 10 28 22 23 6 21 26 158 Table 4. Expressions by Participant for Theme 4: Staff Monitoring/ Total Caring, Reassurance, Participant Meaning Expert Lack Access Expressions Friendly Staff Presence 15 Bruce 1 6vld 2 4 1 11 Chris 1 lvld 1 6 1 12 Owen 1 6 2 3 10 Dennis 1 4 2 1 1 10 Vol. Betty 1 2 3 4 8 Todd 2 1 4 1 8 Vol. Hans 2v 2 3 1 8 Marion 1 4 2 1 8 Cam 1 1 3 3 7 Maurice Id 3 3 6 Kyle 1 3 2 5 Patrick 1 2 2 5 Vol. lime 1 1 3 4 Victoria Id 1 2 3 Norma 2d 1 3 Bekele 1 1 1 3 Ted 1 1 1 2 Josip 1 1 1 Richard 1 Lewis N= N=7 N=18 N=9 N=1 N=14 N—16 Total 129 Expressions 7 39 16 3 35 28 Table 5. Expressions* From Observation Data for Theme 1: Doing EXPRESSIONS=Jt Observed'Artlm FwaalMesngtftai InitrerUr SMMthkgSaM (SJ.V) thane Sal-Thau Exercise Education Clinic Exercise Education Clinic Exercise Education Clinic T«tai Physical/lYeadnill j j Used to do 1 1 Msgs re. Doing 2 2P.3V 7 Life Activities 1 2P.2V 5 Learning limits 3 1P.1V 5 Improving 2P.1V 3 DOING Sickness Levd Roles to Improve Co-Morbidtics 2 2 Uncertain 3P.1S 4 Certain IV 2P,1V 4 H *Where P = Participant, S = Staff member, and V = Volunteer for Tables 5-9 159 Table 6. Expressions From Observation Data for Theme 2: Puzzling EXPRESSIONS=«5 ObsrtVfdAdioils FormalMfssaftfron Instructor Somethteg SaM (SJ.V) Total theme Sub-Theme Exercise Edwcatiou Clinic Exercise Education Clinic Ex erase Education Clinic Causal Factor 9 4 6V3P 10P 3P 45 Test.DoeNrse I 4 1P.1V.1S 4P 13 Msgs Poizing Event, Sym. 2V 2 Medt Comparing to 6 2V 4P 12 Others "2 Table 7. Expressions From Observation Data for Theme 3: Structure - Practices Formnl Messagefrom EXPRESSIONS =101 Observed/Actions Something Said (S,P,V) Instructor Total thnne Sub-Theme Exericse Education Clinic Exericse Education Clinic Exercise Education Clinic Materials 13 1 3 3s 20 Reassurance/ 11 3 2 2s 18 StaffPresence Monitoring Practice! Practices of >7 6 2slp 36 Clinic Self- 1 1 1 4 7 1 3s 5p4s 2? Monitoring 101 160 Table 8. Expressions From Observation Data for Theme 3: Structure - Protocol EXPRESSIONS- 213 Okmrei/'ActiMt F*naat Message from Iajtructw Something Said (SJ,V) Titai Thnaf Sak-Tkouc Exericse Education Clinic Exericse Education Clinic Exercise Education Clinic Throu^i 14 2s2v 18 Space Routine 24 2 1 3 3s 33 Protocd Paperwoito 12 1 Is 14 charting Orientation 19 1 2 22 Materials/op 24 1 3p IP 29 ipnient Structure/ StaffRole 15 3s 18 Protocol Vol. Role 4 4 Exercise 14 9 1 9s?plv 39 Definition Info 12 9 1 2 sip 25 gathering Uncertain Awkward 4 1 2plv 8 Patient "IYainetf" 2 1 3 patirnt 213 Table 9. Expressions From Observation Data for Theme 4: Staff EXPRESSIONS=61 Obanved'Actttni Forma!Mraagt from Iatfrurtor Southing Said (SJP,V) Tatai theme Sub-Thme Exercise Education Clinic Exercise Education Clinic Exercise Education Clinic Compassion/ 1? 2 1 3 4S.2V.1P 30 Care Experience' 7 2 2P 11 Staff Expertise Access 12 8 20 NeedingMore <1 161 APPENDIX G: STUDY PARTICIPANT CHARACTERISTICS Table 10. Demographic Breakdown of Study Participants* Demographic Factor Category CWIC Heart Patients Volunteers Male Female Male Female Gender N=14 N=3 N=1 N=2 Mean (Yrs) 53 63 64 74.5 Age Range (Yrs) 46-75 56-76 64 73-76 Married/common Law 10 2 1 1 Divorced 3 Marital Status Single 1 Widowed 1 1 Elementary Junior High School Level of Education High School College/University Angina 3 Heart Event MI 9 3 1 2 Medical Screening 2 CABG 3 Stent/Angioplasty 11T 1 1 1 Intervention Medication Only 1 1 1 Valve Surgery 1 1 1-3 weeks 3 2 4-6 weeks Exercise Timeline 7-9 weeks 6 10-12 weeks and over 5 1 1-5 Years Post 1 2 The above includes patients and volunteers. I did not collect demographic information from the staff members I interviewed. f Three male patients had received both a stent and undergone CABG surgery.