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Cardiovascular risk-related knowledge, practices, and risk factor control in individuals with stroke… Parappilly, Beena Pieuse 2019

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CARDIOVASCULAR RISK-RELATED KNOWLEDGE, PRACTICES, AND RISK FACTOR CONTROL IN INDIVIDUALS WITH STROKE: IMPLICATIONS FOR PRIMARY AND SECONDARY PREVENTION by  BEENA PIEUSE PARAPPILLY  MSN., The University of British Columbia, 2006  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES (Rehabilitation Sciences)  THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)  March 2019   © Beena Pieuse Parappilly, 2019   ii  COMMITTEE PAGE   The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled: Cardiovascular Risk-related Knowledge, Practices, And Risk Factor Control In Individuals With Stroke: Implications For Primary And Secondary Prevention   submitted by Beena Pieuse Parappilly in partial fulfillment of the requirements for the degree of Doctor of Philosophy in Rehabilitation Sciences   Examining Committee: Janice J Eng, PhD, PT  Supervisor    Thalia S Field, MD FRCPC MHSc Supervisory Committee Member   William B Mortenson, PhD, OT   Supervisory Committee Member Joanie Sims-Gould, PhD, RSW University Examiner Jennifer Kryworuchko, PhD, RN University Examiner    iii  Abstract  Background:  Recurrent strokes, which may comprise up to a fifth of all stroke, are more severe than first events. Optimal secondary stroke prevention may require changes to health-related behaviours and improved vascular risk factor control. While patients’ knowledge regarding stroke, health-related behaviours, and cardiovascular risk may improve with secondary prevention strategies, there is little information available to guide programs for patient and family education for stroke prevention.   Purpose: First, to assess the knowledge of individuals with a recent stroke about stroke symptoms, risk factors, and prevention. Second, to explore the association between stroke knowledge and health behaviours and cardiovascular risk factor control. Last, to explore perceived barriers and facilitators for participation in secondary prevention programs for stroke survivors and their caregivers, and to examine the effectiveness of nursing interventions on modification of stroke risk factors among stroke survivors.   Methods:  A prospective cross-sectional study was conducted to assess the knowledge of individuals with recent stroke and its relation to health-related behaviours and cardiovascular disease risk. Then, a longitudinal qualitative study was conducted using individual interviews with stroke survivors and their caregivers to understand changes in their perceptions regarding secondary stroke prevention in the stroke recovery period. Lastly, a meta-analysis of randomized controlled trials was conducted investigating the role of nurses in secondary stroke prevention.   iv  Results:  The cross-sectional study revealed that stroke patients lacked knowledge about stroke, and those who had better stroke knowledge had better health-related behaviours. Those who were physically active prior to their stroke had better cardiovascular risk factor control. In the qualitative study, stroke was perceived as a soul-searching experience by stroke survivors and their caregivers, motivating them to consider its causes. Despite experiencing some barriers, stroke survivors made lifestyle adjustments, transitioning through different stages of change. The meta-analysis found that nursing interventions were associated with improvements in blood pressure control, diet, physical activity, medication adherence, and knowledge of stroke risk factors.   Conclusions: The findings demonstrate the importance of strengthening current programs for secondary stroke prevention. Further, the findings suggest that developing patient- and family-centered programs may improve the knowledge and health-related behaviours to optimize secondary stroke prevention.       v  Lay Summary Stroke is the second leading cause of death worldwide, and the most common cause of adult-acquired disability in high-income countries. However, most strokes can be avoided. Having knowledge about stroke and adhering to health-related behaviours such as regular exercise, eating healthy, and taking medications if required, are important for preventing stroke. Therefore, the purpose of this study was to understand the knowledge and health behaviours of individuals with stroke. We interviewed stroke patients to understand their knowledge and health behaviours. We discussed what they were doing after their stroke to change their lifestyle and perceived barriers to doing so. Lastly, we assessed how nursing actions could help patients to reduce their risk of stroke. The knowledge obtained through the studies in this thesis will help us to improve those stroke prevention programs currently in place, and will help to develop new prevention programs that are focused on the needs of patients and caregivers.        vi  Preface This dissertation consists of research that was coordinated out of the GF Strong Rehabilitation Research Lab, Vancouver, British Columbia. Participants were recruited from the stroke units at Vancouver General Hospital and St. Paul's Hospital and interviews were held with stroke survivors and their caregivers after discharge from the hospital. All research studies were developed by the student (Beena P. Parappilly), in consultation with a supervisory committee (Janice J. Eng, Supervisor, William B. Mortenson, and Thalia S. Field), and approved by the University of British Columbia Office of Research Services- Clinical Research Ethics Board (certificate #: H15-01338), Vancouver Coastal Health Research Institute (certificate #: V15-01338), and Providence Health Care (certificate #:  H15-01338).   Chapter 2- The regression study has been accepted for publication in Journal of Stroke and Cardiovascular Diseases. Citation: Parappilly BP, Field TS, Mortenson WB, Sakakibara BM, Eng JJ. Determinants influencing the pre-stroke health behaviours and cardiovascular disease risk of stroke patients: A cross-sectional study. 2019. In Press. Chapter 3- A Longitudinal Qualitative Study has been published. Citation: Parappilly BP, Mortenson WB, Field TS, Eng JJ. Exploring Perceptions of Stroke Survivors and caregivers About Secondary Prevention: A Longitudinal Qualitative Study. Disability and Rehabilitation. 2019, DOI: 10.1080/09638288.2018.1544296. Chapter 4 - Meta-analysis on Nursing Role has been published. Citation: Parappilly BP, Field TS, Mortenson WB, Sakakibara BM, Eng JJ. Effectiveness of interventions involving nurses in secondary stroke prevention: A systematic review and meta-analysis. European Journal of Cardiovascular Nursing. 2018, 17 (8): 728-736. vii  BPP and JJE conceptualized each of the studies and developed the research design. BPP collected data and supervised data collection, analyzed the data, wrote the chapters, incorporated the feedback received from the committee members and edited and submitted the manuscripts. WBM and TSF were involved in the concept formation of studies and provided feedback and edited the manuscripts.   viii  Table of Contents Abstract .................................................................................................................................... iii Lay Summary............................................................................................................................ v Preface ...................................................................................................................................... vi Table of Contents ................................................................................................................... viii List of Tables .......................................................................................................................... xiv List of Figures ......................................................................................................................... xv List of Abbreviations ............................................................................................................. xvi Acknowledgements ............................................................................................................... xvii Dedication .............................................................................................................................. xix Chapter 1: Introduction ........................................................................................................... 1 1.1 Stroke  ......................................................................................................................... 1 1.2 Stroke has a huge disease burden and cost to society ................................................... 1 1.3 Most strokes are preventable ....................................................................................... 4 1.4 Recurrent strokes are common and disabling ............................................................... 6 1.5 Secondary stroke prevention programs can improve health-related behaviours and              reduce the risk of future strokes ................................................................................... 6 1.6 Stroke-related knowledge in stroke survivors is poor ................................................... 8 1.7 Rationale for thesis studies  ......................................................................................... 9 1.8 Use of the Transtheoretical Model  ............................................................................ 10 1.9 Mixed methods research  ........................................................................................... 12 1.10 Research paradigm .................................................................................................... 13 1.11 Research purpose....................................................................................................... 14  ix  1.12 The outline of the purpose and hypotheses of three chapters..... ................................. 14 1.13 Summary  .................................................................................................................. 15 Chapter 2: Determinants influencing the pre-stroke health-related behaviours and                      cardiovascular disease risk of stroke patients: A cross-sectional study …….....16 2.1 Introduction ............................................................................................................... 16 2.2 Methods .................................................................................................................... 18 2.2.1 Study design ................................................................................................................ 18 2.2.2 Participants .................................................................................................................. 19 2.2.3 Outcome measurements .............................................................................................. 19 2.2.4 Knowledge assessment questionnaire ......................................................................... 19 2.2.5 Health behaviour ......................................................................................................... 20 2.2.6 Cardiovascular disease risk score ................................................................................ 20 2.2.7 Data analysis ............................................................................................................... 21 2.3 Results  ..................................................................................................................... 22 2.3.1 Participant's knowledge of stroke ................................................................................ 22 2.3.2 Health-related behaviours ........................................................................................... 23 2.3.3 Cardiovascular disease risk score ................................................................................ 24 2.4 Discussion  ................................................................................................................ 29 2.4.1 Knowledge of stroke patients ...................................................................................... 29 2.4.2 Association between stroke knowledge and health behaviours ............................... ...30 2.4.3 Factors influencing cardiovascular disease risk ...................................................... ....30  2.4.4 Limitations .............................................................................................................. ....31  2.4.5 Future research directions ........................................................................................ ...32  2.5 Conclusion  ............................................................................................................... 32 x  Bridging Statement I ...................................................................................................................33 Chapter 3: Exploring Perceptions of Stroke Survivors and Caregivers about Secondary                      Prevention: A Longitudinal Qualitative Study ................................................... 34 3.1 Introduction ............................................................................................................... 34 3.2 Methods .................................................................................................................... 35 3.2.1 Design ......................................................................................................................... 35 3.2.2 Participants  ................................................................................................................. 36 3.2.3 Recruitment ................................................................................................................. 36 3.2.4 Data collection............................................................................................................. 36 3.2.5 Data analysis ............................................................................................................... 38 3.2.6 Trustworthiness ........................................................................................................... 39 3.3 Results ...................................................................................................................... 39 3.3.1 Theme 1: A soul-searching experience ....................................................................... 40 3.3.2 Theme 2: Old habits die hard ...................................................................................... 41 3.3.3 Theme 3: Making a fresh start .................................................................................... 43 3.4 Discussion ................................................................................................................. 50 3.4.1 Strengths  ..................................................................................................................... 53 3.4.2 Limitations .................................................................................................................. 53 3.5 Conclusion ................................................................................................................ 53 Bridging Statement II..................................................................................................................55 Chapter 4: Effectiveness of interventions involving nurses in secondary stroke prevention:                 A systematic review and meta-analysis................................................................................56 4.1 Introduction ............................................................................................................... 56 4.2 Methods .................................................................................................................... 57 xi  4.2.1 Eligibility criteria ........................................................................................................ 58 4.2.2 Search strategies .......................................................................................................... 58 4.2.3 Data extraction ............................................................................................................ 59 4.2.4 Statistical analysis ....................................................................................................... 59 4.2.5 Sensitivity analysis ...................................................................................................... 60 4.3 Results ...................................................................................................................... 60 4.3.1 Search results and study description ........................................................................... 60 4.3.2 Quality of evidence ..................................................................................................... 61 4.3.3 Where the interventions took place ............................................................................. 61 4.3.4 Who provided the intervention.................................................................................... 61 4.3.5 The modes of delivery of the intervention .................................................................. 63 4.3.6 Intensity of the interventions ....................................................................................... 64 4.3.7 Tailoring of the intervention........................................................................................64 4.3.8 Adherence and fidelity ................................................................................................64 4.3.9 Adverse events ............................................................................................................64 4.3.10       Effect of interventions involving nurses on controlling medical risk factors..............65  4.3.11 Effect of interventions involving nurses on controlling behavioural risk factors..65 4.3.12 Effect of interventions involving nurses on knowledge of risk factors of stroke  .......66 4.3.13 Sensitivity analyses .....................................................................................................66 4.3.14 Effect of interventions involving nurses on controlling other risk factors ..................67 4.4 Discussion .........................................................................................................................73 4.4.1 Limitations ... .............................................................................................................. 75 4.5 Conclusion ........................................................................................................................76   xii  Chapter 5: Overall discussion, synthesis, and future directions.... ....................................... 77 5.1 Overview ................................................................................................................... 77 5.2 Integrated findings with implications for practice.........................................................78  5.2.1 Knowledge of stroke ................................................................................................... 78 5.2.2 Delivery of secondary stroke prevention programs... ................................................. 80 5.2.3 Progression of  lifestyle changes... .............................................................................. 82 5.2.4 Role of nurses in secondary stroke prevention... ......................................................... 84 5.2.5 Interdisciplinary approach for secondary stroke prevention... .................................... 85 5.2.6 Family involvement in secondary stroke prevention... ............................................... 86 5.3 Strengths of this research ........................................................................................... 87 5.4 Limitations of this research ........................................................................................ 88 5.5 Designing an optimal secondary stroke prevention program.. .................................... 89 5.5.1  Place of initiation......................................................................................................... 89 5.5.2  Who can deliver the program?... ................................................................................. 90 5.5.3  Content of the program... ............................................................................................ 90 5.5.4  What interventions can be offered?... .......................................................................... 90 5.5.5  Mode of delivery... ...................................................................................................... 91 5.5.6  Duration of the program... ........................................................................................... 91 5.5.7  Duration and dose of the intervention... ...................................................................... 91 5.5.8         A graphical representation of the optimal secondary stroke prevention program...... 92 5.6 Cost benefit analysis ..........................................................................................................93 5.7 Conclusion..........................................................................................................................94   xiii  Bibliography............................................................................................................................ 95 Appendices ............................................................................................................................ 117 Appendix A   STROBE Checklist ....................................................................................... 117 Appendix B   Data Collection Questionnaire ....................................................................... 119           Demographic Information.................................................................................................119             Functional Comorbidity Index...........................................................................................121           Medication Profile.............................................................................................................122           Blood Test..........................................................................................................................123           Stroke Knowledge Assessment Questionnaire..................................................................124           Body Composition.............................................................................................................127           Resting Blood Pressure......................................................................................................128           Smoking Status and Alcohol Consumption.......................................................................129           National Institutes of Health Stroke Scale.........................................................................130           Montreal Cognitive Assessment........................................................................................136           Modified Rankin Scale......................................................................................................143           Health Promoting Lifestyle Profile II................................................................................144 Appendix C  Framingham Risk Score Tool.............................................................................151 Appendix D  COREQ II Checklist ...................................................................................... 152 Appendix E  Qualitative Interview Guide  ........................................................................... 154 Appendix F  List of Excluded Studies  ................................................................................ 169 Appendix G PEDro Scale .................................................................................................... 178 Appendix H Study Characteristics  ...................................................................................... 180   xiv  List of Tables Table 2.1 Demographic and Health-Related Behaviour Characteristics of the Participants....25 Table 2.2 Multiple Regression Analysis: Predictors of Health-Related Behaviour (Health                 Promoting Life Style Profile II) (n=100)  ................................................................27 Table 2.3 Multiple Regression Analysis: Predictors of Cardiovascular Disease Risk                  (Framingham Risk Score) (n=92) ............................................................................28 Table 3.1 Demographic Characteristics of the Stroke Survivors  ............................................46 Table 3.2 Theme 3: Making a Fresh Start ................................................................................48 Table 4.1 Search Strategy..........................................................................................................68     xv  List of Figures Figure 2.1 Knowledge of Stroke Symptoms. Percent who were able to identify each symptom   (n=100).........................................................................................................................26 Figure 2.2 Comparison of the Number of Participants with a History of Risk Factors Versus    those with a History and Knowledge of the Risk Factor (n=100) ...............................26Figure 4.1 Flow Diagram..............................................................................................................70 Figure 4.2 Medical Risk Factors: Effect Sizes, Standardized Mean Differences and Forest        Plots..............................................................................................................................71 Figure 4.3 Knowledge and Behavioural Risk Factors: Effect Sizes, Standardized Mean         Differences (SMD), Odds Ratio (OR), and Forest Plots..............................................72 xvi  List of Abbreviations BMI = Body Mass Index CI = Confidence Interval  COREQ II = Consolidated Criteria for Reporting Qualitative Research DBP = Diastolic Blood Pressure FAST = Face, Arm, Speech and Time to call 911 FRS = Framingham Risk Score HbA1c = Glycated Hemoglobin HDL = High Density Lipoprotein HPLP II = Health-Promoting Lifestyle Profile II I2 =I-squared  LDL = Low Density Lipoprotein LQR = Longitudinal Qualitative Research MeSH = Medical Subject Heading MoCA = Montreal Cognitive Assessment NIHSS = National Institutes of Health Stroke Scale OR = Odds Ratio PEDro = The Physiotherapy Evidence Database PICO = Participants (P), Interventions (I), Comparator (C), Outcomes (O) RCT = Randomized Controlled Trial RefWorks = Reference Management System RevMan = Review Manager  SBP = Systolic Blood Pressure SMD = Standardized Mean Difference  SPSS = Statistical Package for the Social Sciences STROBE Statement = Strengthening The Reporting of Observational studies in Epidemiology TIA = Transient Ischemic Attack TIDieR = Template for Intervention Description and Replication xvii  Acknowledgements Firstly, I would like to express my sincere gratitude to my supervisor Prof. Dr. Janice Eng for the professional guidance that helped me to endure through the PhD journey in the last five years. Besides my supervisor, I would like to acknowledge the rest of my thesis committee: Drs. Ben Mortenson and Thalia Field, for their insightful feedback and encouragement to enrich my research experience. I could not have imagined having a better committee for my PhD study. I am also grateful to Dr. Brodie Sakakibara for sharing his fresh insights and perspectives.  A very special gratitude to the Canadian Institutes of Health Research (FND-143340) and Canada Research Chairs Program (JE) Research Fund for helping and providing the funding for the PhD research. I offer my enduring gratitude to Ms. Sandra Barr and the rest of the team at Providence Health Care, who have inspired and supported me in completing my PhD.  I would like to thank all patients and their caregivers for participating in the interview and for helping me discover new perspectives on stroke care. I wish to thank my fellow doctoral students for their feedback and friendship. I am exceptionally grateful to John Wu and other research assistants at the lab. It was great knowing you all and receiving your assistance during the last five years. Special thanks are owed to my husband, who has supported me relentlessly for the last 26 years to pursue my goals. I would like to acknowledge the support of my loving children, Alex and xviii  Alvin, who were in undergrad program at UBC at the same time. Three of us enjoyed the campus together.  I am also grateful to my parents, other family members and friends who have supported me along the way.   To my role model, my late Amma: I know you want the best for me always. The stroke that stole your life from us forever inspired me to pursue research in that area. I miss you Amma! Above all, Thanks to my almighty God for His immeasurable blessings upon my life!    xix  Dedication   To my husband, Pieuse, and children, Alex and Alvin  and   To my appan, amma, brothers, brother in laws, sister in laws, nieces, nephews, and friends for their steadfast love, support, and prayers 1  Chapter 1: Introduction 1.1 Stroke  A stroke is a neurological vascular event that causes acute injury to the central nervous system (Sacco et al. 2013). The symptoms of stroke may include: sudden numbness or weakness, especially on one side of the body, sudden confusion or trouble speaking or understanding speech, sudden trouble seeing in one or both eyes, sudden trouble with walking, dizziness, or loss of balance or coordination, or sudden severe headache. Of all strokes, 87% are ischemic, 10% are intracerebral hemorrhages, and 3% are subarachnoid hemorrhages (Benjamin et al. 2017). While the pathology of ischemic stroke is related to vessel occlusion, hemorrhagic stroke is due to vessel rupture with bleeding in the brain (Donnan et al. 2008). Secondary prevention strategies differ by stroke type.   1.2 Stroke has a high disease burden and cost to society  In Canada, every year, approximately 62,000 people suffer stroke and transient ischemic attack (TIA) and over 405,000 Canadians are living with the effects of stroke (Wein et al. 2018). TIA is described as, "a transient episode of neurological dysfunction caused by focal brain, spinal cord, or retinal ischemia, without acute infarction" (Easton et al. 2009). The total incidence of stroke in Canada may be underestimated, as many patients who experience a minor stroke or TIA may present to primary care and stroke/TIA clinics without hospital admission (Wein et al. 2018).  According to a stroke report by Heart and Stroke Foundation of Canada (Heart and Stroke Foundation of Canada 2017), the number of Canadians living with stroke will almost double in the next 20 years as the population ages.    Stroke is a major cause of death worldwide. According to a report by World Health Organization (WHO) (Johnson et al. 2016), stroke is the second-leading cause of death in the world and the third-leading cause  2  of disability. In Canada, stroke and other cerebrovascular diseases are the third leading cause of death (Wein et al. 2018).   Over the past 60 years in Canada, advances in technology have facilitated enhanced investigation and treatment, and as a result, death rates from cardiovascular disease and stroke have decreased by more than 75% (Heart and Stroke Foundation of Canada 2014). Clinicians have become increasingly aware that acute therapies are most effective when delivered as quickly as possible to prevent irreversible brain injury from stroke. The introduction and widespread adoption of revascularization therapies including thrombolytics and mechanical thrombectomy, procedures such as hemicraniectomy, improvements in systems of care to implement therapy as rapidly as possible, and improved awareness on behalf of the public and health care professionals have all contributed to a decrease in fatal strokes.  In Canada, over 80% of stroke patients who make it to the hospital now survive (Heart and Stroke Foundation of Canada 2017). The corollary to this, however, is that survivors may be left with stroke-related disability.  Over 40% of survivors experience moderate to severe disability from stroke, which exerts an additional burden on the health care system and caregivers.   The stroke-related disability and disease burden are significant. The WHO report found that stroke results in the greatest burden of disease amongst all neurological disorders (including Alzheimer and other dementias) (WHO 2006). In a poll conducted (Heart and Stroke Foundation of Canada 2017) with stroke survivors and caregivers, about 60% of stroke patients are left with some disability. Of those, more than 40% are left with moderate-to-severe disability, including speech and communication issues (52%) and mobility problems (48%) requiring intense rehabilitation and community supports. Post-stroke complications are not limited to physical disabilities. The complications include aphasia, depression , post- 3  stroke fatigue, cognitive impairment and obstructive sleep apnea that may impact the recovery of stroke patients (Swartz et al. 2016; Heart and Stroke Foundation of Canada 2017).    Stroke, both acutely and as a chronic disease, is costly to the already strained health care system. Stroke accounts for over 4% of all direct health care costs in high-income countries (Donnan et al. 2008). The estimated annual cost of stroke in Canada is approximately $3.6 billion, taking into account healthcare costs, lost wages, and decreased productivity (Krueger et al. 2012).   Managing stroke is complex due to the high burden of co-morbidity in stroke survivors. Stroke patients may have multiple co-morbid conditions, including hypertension, diabetes mellitus, coronary artery disease, or cancer, which can impact their treatment, in-hospital clinical course, and their recovery. Stroke patients in Canada have, on average, five co-morbid health conditions (Heart and Stroke Foundation of Canada 2017).    Stroke has a large impact on the health care system and society as a whole, and there are significant gaps in the rehabilitation and community services and supports needed to meet the needs of stroke survivors and their caregivers. It is important to note that one- to- two thirds of stroke survivors experience a loss of function that requires rehabilitation (CIHI 2009), however there are insufficient resources available to support all stroke patients throughout their entire recovery journey. Of those stroke patients who require inpatient rehabilitation, only 16%  get into inpatient rehabilitation after leaving an acute care hospital and only 19%  within the first month after leaving the hospital (Heart and Stroke Foundation of Canada 2017), which may have an impact on their recovery and prevention of future stroke. Two-thirds of stroke survivors return home and caregivers play an essential role in their recovery (Heart and Stroke Foundation of Canada 2017).  4  However, many improvements have taken place in the stroke system of care in Canada and particularly in British Columbia (B.C.) in the recent years. Since 2006 the provincial government has spent $5 million in the B.C. Stroke Strategy (Canadian Stroke Network 2011). Some of the improvements resulted from this initiative include: 1) Developed and implemented best practice guidelines for primary care physicians to improve stroke/TIA prevention and management, 2) Developed new TIA clinics and increased access to TIA Rapid Assessment, in addition to increasing capacity to existing clinics in all health authorities, 3) Implemented two telestroke systems to assist in the investigation and treatment (thrombolysis/endovascular thrombectomy) of stroke patients, 4) Developed a stroke/TIA registry, and 5) Developed and  implemented protocols for stroke/TIA management in the emergency departments and attained a commitment from the provincial government to make stroke a strategic long term priority (Canadian Stroke Network 2011).  1.3 Most strokes are preventable Primary prevention is defined as a approach to prevent someone from getting a disease (HealthLink BC 2016). It is a population based approach to prevent disease among communities or an individually based clinical approach to disease prevention, directed toward preventing the initial occurrence of a disorder in otherwise healthy individuals (Wein et al. 2018). Primary prevention is often implemented in the primary care setting, and the physician, advanced practice nurse, pharmacist or patient may initiate a discussion of stroke risk reduction.   There are various non-modifiable and modifiable risk factors responsible for the occurrence of stroke. The non-modifiable risk factors for stroke include age, sex, race, ethnicity, family and medical history and a previous history of stroke (Bergman 2011). The INTERSTROKE study found that 90% of the risk of stroke occurrence is attributable to ten modifiable risk factors: hypertension, current smoking status, waist-to-hip ratio, diet, physical activity, diabetes mellitus, alcohol intake, psychosocial stress and depression,  5  cardiac causes, and the ratio of apolipoproteins B to A (O'Donnell et al. 2010). The primary prevention of stroke may be achieved through lifestyle and modifiable risk factor management in patients at high risk of a first stroke in the primary care setting that may reduce the risk and burden of stroke (Wein et al. 2018).    Both pharmacological and non-pharmacological strategies have been shown to reduce the risk for stroke and other cardiovascular diseases. The impact of healthy lifestyle strategies on stroke risk reduction has gained attention in the past years. A study (Larsson et al. 2015) has demonstrated that the risk for stroke and other cardiovascular diseases in high-risk males was reduced by the adoption of multiple healthy behaviors. A similar effect was found in women (Larsson et al. 2014). Thus, there is an opportunity to reduce the risk for stroke and other cardiovascular diseases that may be achieved by collaboration between individuals, families and health care providers in improving lifestyle and medication adherence.   The American Heart Association/American Stroke Association (AHA/ASA) (Kernan et al. 2014) and the Heart and Stroke Foundation of Canada has emphasized the relevance of promoting acute stroke treatment and preventative strategies to the public, high-risk individuals and stroke survivors. One recent example is the recent “FAST” campaign by the Heart and Stroke Foundation of Canada (www.strokebestpractices.ca) for identifying stroke symptoms, which has gained attention in the media and from the public.   Conducting cardiovascular risk assessment in the primary setting may identify individuals at risk for stroke.  There are various Cardiovascular disease (CVD) risk assessment tools available to calculate the absolute risk of CVD for individual patients. Framingham risk score (D'Agostino et al. 2008) is a multivariable risk factor algorithm commonly used to determine a 10- year general risk of CVD and risk of individual CVD events (coronary heart disease, cerebrovascular disease, peripheral vascular disease, and heart failure). This score considers age, sex, smoking status, diabetes and cardio-metabolic risk factors for  6  stroke such as HDL, total cholesterol and systolic blood pressure, as well as treatment status.  The Framingham general CVD risk prediction tool has been validated for use in various countries and ethnic groups (Zomer et al. 2011; Chia et al. 2015).  There are other risk assessment tools to specifically estimate absolute risk of stroke within the next 5 to 10 years (Feigin and Norrving 2014).    1.4 Recurrent strokes are common and disabling  Stroke survivors have a high chance to experience a subsequent stroke. In fact, the greatest risk factor for a future stroke is a previous stroke or TIA (Furie et al. 2011). While risk for recurrent stroke is highest within the first few weeks following an event, previous events confer a persistently higher lifetime risk of future events.   Recurrent strokes are responsible for almost 30% of strokes occurring every year (Sacco et al. 2006) and approximately 25% of these strokes occur in patients within five years of the original stroke (Hankey et al. 2007).  Additionally, recurrent strokes are generally more severe and thus more likely to result in disability, dementia and death (Pendlebury and Rothwell 2009).  Thus, effective secondary prevention is an important component in reducing the burden of stroke-related morbidity, mortality and health care costs.  1.5 Secondary stroke prevention programs can improve health-related behaviours and reduce the risk of future strokes While the focus of primary prevention is preventing a stroke from happening, the focus of secondary prevention is trying to detect a disease early and prevent it from getting worse (HealthLink BC 2016). Secondary prevention in stroke can be achieved by adopting an individually based clinical approach for reducing the risk of recurrent vascular events in stroke/TIA survivors and high-risk individuals by addressing modifiable risk factors for stroke (Wein et al. 2018). Secondary prevention programs that focus  7  on modifying stroke risk factors through improving health behaviours can decrease the risk of future strokes by up to 80% (Hackam and Spence 2007).   Several studies have confirmed the relationship between behavioural lifestyle changes and improved cardiovascular risk factor burden, as well as reduced risk for clinical events. A systematic review and meta-analysis on multimodal behavioural interventions for secondary prevention of stroke/TIA in stroke survivors demonstrated that multimodal secondary prevention interventions reduced systolic and diastolic blood pressure by 4.21 mmHg and 2.03 mmHg respectively, decreased anxiety, increased compliance with certain medications, produced positive trends in blood lipids and anthropomorphic measures, and reduced recurrence of cardiac events (Lawrence et al. 2015).   The design of lifestyle-related programs may also contribute to an intervention’s success. A meta-analysis examining the effects of lifestyle interventions on blood pressure reduction found an overall 3.6 mmHg reduction in systolic blood pressure (SBP) in patients with TIA or ischemic stroke. Cardiovascular fitness intervention, interventions that lasted longer than 4 months, and interventions that used more than three behavior change techniques were most effective in reducing SBP (Deijle et al. 2017).   While direct lifestyle intervention programs reduce risk, even interventions providing education alone can improve risk factor burden. A systematic review assessing the effect of providing CVD risk information to adults found that the information may motivate individuals at moderate to high-risk to plan activities that will mitigate the risk (Sheridan et al. 2010).  A study (Ghisi et al. 2014) conducted a systematic review of the impact of patient education on cardiac patients and noted improved knowledge and positive behaviour changes in physical activity, dietary habits, and smoking cessation. Patient education interventions were most frequently delivered post-discharge by a nurse in group settings. Along with lectures and group  8  discussions, most studies incorporated telephone follow-up contact and individual counseling. On average, they delivered six educational sessions of short duration (5-10 mins/session) covering more than 3 topics per intervention, with the most common ones being nutrition, exercise, risk factors, psychosocial well-being, and medications.   Another model for secondary stroke prevention is the ICARUSS (IC) model (Joubert et al. 2009). It is an integrated system of education, advice and support to both patient and general practitioner (GP) addressing the modifiable risk factors by early prescription of medications by the medical staff, promotion of lifestyle changes with education to patients and carers, and long-term surveillance by the nurse coordinator and the GP. The GP received telephone support from a neurologist. The visits with the GPs were prearranged for 2 weeks, 3 months, 6 months, 9 months and 12 months post discharge. Over 12 months, the participants in this shared model demonstrated improvements in blood pressure, BMI and physical activity. Thus, there are several models of secondary stroke prevention programs trialed with positive results and changes in behaviour.   1.6 Stroke-related knowledge in stroke survivors is poor  An important component of secondary prevention is improving the awareness of stroke symptoms and risk factors in stroke survivors (Maasland et al. 2007). However, many studies have demonstrated a gap in stroke knowledge of both the general public and chronic stroke survivors. An integrative review of 39 published articles about stroke knowledge (Jones et al. 2010) showed that the ability to name one stroke symptom ranged from 25-72%, and one stroke risk factor ranged from 18 to 94%, indicating that the level of knowledge regarding recognition and prevention of stroke is generally poor. Only a few studies have assessed the knowledge of stroke patients in the acute phase representing the knowledge the patients had prior to their stroke. Two studies (Kothari et al. 1997; Carroll et al. 2004) assessed the knowledge of  9  patients who were admitted to hospital with stroke. One study (Kothari et al. 1997) assessed stroke patients within 12-48 hours following their admission into emergency departments and found that almost 40% were unaware of stroke symptoms or risk factors. Another study (Carroll et al. 2004) compared the stroke knowledge of four groups: patients at risk of stroke, patients with stroke/TIA within 48 hours of their admission in hospital, members of the general public, and nurses. The stroke survivors demonstrated more gaps in their knowledge of risk factors than the other three groups.   1.7 Rationale for thesis studies Whether such poor knowledge demonstrated in these two older studies persist today, given the many public stroke awareness campaigns in the interim, is not known.  Assessing the current knowledge of stroke survivors regarding stroke symptoms, risk factors, and stroke prevention in will provide helpful information in planning programs to support patient-centered strategies for secondary prevention.  There is scant information on the association between stroke knowledge, various health-related behaviours, and socio-demographic variables that need to be explored as this knowledge will help to illuminate our understanding of the influence these factors have on stroke risk. In addition, it would be important to determine how knowledge and health behaviours influence cardiovascular disease risk. The knowledge gained on these various aspects may help to implement or strengthen current strategies to drive behaviour modification for stroke risk reduction.   In addition to gaps in stroke patients’ knowledge, the interest and enthusiasm among stroke survivors in the acute stage for making changes in their lifestyles seems to diminish over time in the recovery phase, and this has an impact on their ability to control their risk factors and increase their risk for recurrent strokes (Leistner et al. 2013). Although stroke survivors and their families receive stroke education in the post- 10  recovery phase, it is unclear to what degree education and interactions with health care providers influence their dietary modifications, medication adherence, physical activity, and stress management.   Qualitative studies have previously explored beliefs and lifestyle behaviour (Lawrence et al. 2010), perceptions of healthy lifestyles (Clague-Baker et al. 2017) and barriers to healthy lifestyle participation (Lennon et al. 2013) following stroke. However, there is scant information on how their perceptions and lifestyle changes evolved over the stroke recovery period. A longitudinal qualitative study approach may help to explore the changes over time in perceptions of barriers and facilitators experienced by stroke survivors for participating in secondary prevention activities. This in turn may help to inform development of better preventative strategies to create durable behavioural changes.   All members of the health care team are expected to facilitate engagement of stroke survivors in stroke prevention programs. However, nurses play a larger role in informing stroke survivors and their caregivers on various aspects of their disease process and engaging them in stroke prevention programs in various clinical settings. While various studies have explored the role of nurses in working either alone or as part of a team and their impact on secondary prevention in stroke survivors, no systematic reviews or meta-analyses have explored the impact of the role of nurses on improving stroke risk factors and stroke knowledge for secondary stroke prevention. This knowledge may also help us to address issues associated with the current stroke prevention and education strategies.    1.8 Use of the Transtheoretical Model  The Transtheoretical model (Prochaska and DiClemente 1982) of behavior change will be used in this thesis to guide the analysis and interpretations of the study findings. It is an integrated theoretical model that aims to explain behavioural changes of any kind.  According to this model, there are five stages of  11  behaviour change: pre-contemplation, contemplation, action, maintenance, and relapse. This model stresses that individuals progress from their current stage to the next stage by adopting behaviour changes.  Prochaska and DiClemente (1982) state that a client brings positive expectations to treatment, and thus, their expectations and the trust between the client and the therapist are key in this model. In the Transtheoretical model, the client has more control being the expert on the content and determining which content should be changed. The therapist is the expert on the processes of behaviour change. In the context of quitting smoking in a study (Prochaska and DiClemente 1983), clients went through four stages of change: 1) thinking about stopping smoking (pre-contemplation); 2) becoming determined to stop (contemplation); 3) actively modifying their habits and/ or environment (action); and 4) maintaining their new habit of not smoking (maintenance). Progression was not linear from one stage to the next. Rather, clients moved backwards at times and showed progress at other times (Prochaska and DiClemente 1982).  Transtheoretical model of behaviour change guides counselors to determine individual’s readiness and intention to change behaviour and to group clients according to their stage of change (Prochaska and DiClemente 1983). Since its development, researchers have modeled this framework in designing intervention programs to improve healthy habits. The work in this thesis will use the Transtheoretical model to determine the stages of change the stroke survivors are in as they focus on behaviour change in the early stroke recovery period.  Since the focus of secondary stroke prevention is on lifestyle changes and risk factor modification, employing the Transtheoretical model as the basis for analysis and interpretations of findings in this thesis will inform the design of future interventions to improve secondary stroke prevention.     12   1.9 Mixed Methods Research We will use a mixed methods study design, which combines qualitative and quantitative methods (Prothereo et al. 2007; Clark 2010; Zhang and Creswell 2013). Mixed methods research combines the strengths of both quantitative and qualitative research to derive a richer and fuller understanding about the phenomenon being studied (Zhang and Creswell 2013).  There are six major types of mixed methods study designs: sequential explanatory design, sequential exploratory design, sequential transformative design, concurrent triangulation design, concurrent nested (embedded) design, and concurrent transformative design (Cresswell et al. 2003). In this thesis, a sequential transformative design will be used.  In this design, both the quantitative and qualitative studies are conducted in two phases, but the researcher uses their theoretical perspective to determine the order of data collection. The results from both methods are integrated together at the end of the study during the interpretation phase.   Following the expectation of this design, quantitative study will be conducted first to objectively measure and determine the association between level of knowledge, health behaviours, and CVD risk in stroke survivors. This is followed by the qualitative study to deepen our understanding about the current programs for secondary stroke prevention, by interviewing stroke survivors and caregivers to provide information on perceptions, challenges and barriers to participation in stroke prevention activities. Thus, we will collect and analyze data separately in Chapter 2 and 3, followed by integrating the findings and their interpretation in the final chapter. Combining both quantitative and qualitative study in mixed methods research will provide a fuller understanding of the issues associated with secondary stroke prevention among high risk individuals, stroke survivors, and their caregivers. The datasets from both quantitative and qualitative study will relate to and complement each other. Thus, mixing different types of methods can strengthen the  13  thesis. This is essential in designing secondary prevention programs for the real world that will be efficacious and will effect sustainable behaviour changes.  1.10 Research Paradigm A research paradigm or the researcher's worldview is the conceptual lens that guides the researcher's thought process to determine the methods for data collection and data analysis (Kivunja and Kuyini 2017).  The paradigm is the abstract beliefs and principles that influence how a researcher sees the world and how they interpret and act within that world (Kivunja and Kuyini 2017).  There are different types of paradigms that a researcher can use to guide their research. The postpositivist paradigm supports the scientific methods that involve a process of experimentation to test hypothesis, explore association, and answer questions ((Kivunja and Kuyini 2017). In this thesis, chapter 2 and 4 will be focusing on experimental methods to make predictions and explore cause effect relationship. Therefore positivist paradigm will be guiding the research methods and analyses for chapter 2 and 3. On the other hand, the postpositivist paradigm provides the worldview for most research conducted on human behaviour (Morrow 2005; Kivunja and Kuyini 2017). This paradigm accepts the view that reality is imperfect and can never be fully understood.  Additionally, postpositivist paradigm allows for studies without experimentation or testing of hypotheses (Kivunja and Kuyini 2017).  Chapter 3 focuses on exploring the perceptions of stroke survivors and caregivers through a qualitative study and will be guided by the postpositivist paradigm. Thus, this thesis will benefit from the positivist and postpositivist paradigms to guide the research studies. There are particular standards of trustworthiness that are congruent with these paradigms: internal validity, external validity, reliability, and objectivity (Morrow 2005). Different aspects of these standards will be examined in this thesis.     14   1.11 Research Purpose Thus, the overall purpose of this research is to broaden our understanding of the stroke knowledge, health behaviours related to prevention of stroke, and risk factor control in stroke patients. The study will help to inform us of the perceptions of stroke survivors and their caregivers in following health behaviour for secondary prevention of stroke in the stroke recovery period. Also, this study will determine the effectiveness of secondary stroke prevention programs which have a major role for nurses. Thus, a combination of quantitative and qualitative studies will be utilized in this thesis to broaden our understanding of the current stroke prevention programs and its implications for strengthening both primary and secondary stroke prevention.   1.12 The following outlines the purpose and hypotheses of each of the three chapters:   Chapter 2: Determinants influencing the pre-stroke health behaviours and cardiovascular disease risk of stroke survivor: A cross-sectional study Purpose: To assess the knowledge of symptoms, risk factors, and stroke prevention in individuals with stroke. Additionally, chapter 2 will quantify predictors of health-related behaviours and determine how knowledge and health-related behaviours influence cardiovascular disease risk in stroke patients.  Hypotheses: Level of stroke knowledge will be independently associated with health-related behaviours and cardiovascular risk after stroke.      15  Chapter 3: Exploring Perceptions of Stroke Survivors and Caregivers about Secondary Prevention: A Longitudinal Qualitative Study Purpose: To explore how the perceived barriers and facilitators associated with participation in secondary prevention activities change over the early stroke recovery period among stroke survivors and their caregivers, and how they transition through stages of change while adopting behaviour modifications.     Given the qualitative nature of this study, no hypothesis was proposed.  Chapter 4: Effectiveness of interventions involving nurses in secondary stroke prevention: A systematic review and meta-analysis Purpose: To assess the effects of interventions in which nurses have a primary role on the modification of medical risk factors (blood pressure, cholesterol, low-density lipoprotein (LDL), high-density lipoprotein (HDL), blood glucose), behavioral risk factors (e.g., physical activity, smoking, alcohol, diet, medication adherence), and improvement in knowledge of risk factors among stroke survivors.   Hypotheses: Stroke prevention programs in which nurses have a primary role will demonstrate improved risk factor modification and stroke prevention practices among stroke survivors.   1.13 Summary  The studies conducted as part of this PhD thesis will provide a comprehensive understanding of the current knowledge status, health behaviour practices, cardiovascular disease risk, perceptions of challenges and facilitators of stroke survivors for pursuing secondary prevention programs, and finally the role of nurses in supporting stroke survivors for secondary prevention of stroke. This work will also expose the strengths and weaknesses of the current secondary prevention programs available through diverse sectors of the healthcare system to support stroke survivors and their families. The findings will provide administrators, policy makers, and clinicians with some insights into designing, implementing and evaluating evidence-based, outcome-driven, novel programs for prevention of stroke.  16  Chapter 2:  Determinants influencing the pre-stroke health-related behaviours and cardiovascular disease risk of stroke patients: A cross-sectional study  2.1 Introduction Each year, approximately 795,000 people experience a new or recurrent stroke in the United States.  Of these, approximately 610,000 are first events and 185,000 are recurrent events (Benjamin et al. 2017).  The economic impact of stroke is enormous with direct and indirect costs of stroke totaling an annual $33.9 billion in the United States (Benjamin et al. 2017). Additionally, the risk for recurrent stroke is high, with approximately 25% of recurrent events occurring within five years of the original stroke (Hankey et al. 2007). Patients with recurrent strokes have higher rates of adverse clinical outcomes and associated costs are 38% higher than with the first event (Engel-Nitz et al. 2010).  Modifiable risk factors play a major role in the occurrence of stroke. An international case-control study of over 40,000 individuals from 32 countries found that 10 potentially modifiable risk factors such as history of hypertension, lack of physical activity, apolipoprotein ratio, diet, waist-to-hip ratio, psychosocial factors, current smoking, cardiac causes, alcohol consumption and diabetes mellitus are collectively associated with 90% of stroke risk (O'Donnell et al. 2010).  Of these, hypertension is the strongest modifiable risk factor for stroke.  Approximately 77% of those with a first-ever stroke have a resting blood pressure (BP) of >140/90 mmHg (Go et al. 2014). There are several studies that explored the benefits of various health behaviours on prevention of stroke.  A meta-analysis of observational data showed that moderately intense physical activity showed a protective effect on stroke (Wendel-Vos et al. 2004).  The risk of stroke is decreased with an increasing number of health-related behaviours (e.g., 5 servings per day of fruits and vegetables and less than 30 grams per day of processed meat, not smoking, 150 minutes per  17  week of physical activity, normal body mass index) in men and women at higher risk of stroke (Larsson et al. 2014; Larsson et al. 2015). Despite the known importance of health-related behaviours, there is a paucity of papers which have examined the specific health-related behaviours (e.g., physical activity, diet) of patients prior to their stroke and their relation to cardiovascular disease risk.  Knowledge of stroke symptoms, risk factors and prevention could potentially motivate people to pursue a healthy lifestyle to prevent stroke and reduce its impact.  In the last decade, there have been several studies exploring the stroke knowledge of the general public, and results are varied (Reeves et al. 2008; Hickey et al. 2009; Jones et al. 2010; Kim et al. 2011; Slark et al. 2012).  An integrative review of 39 published articles about stroke knowledge (Jones et al. 2010) showed that the ability to name one stroke symptom ranged from 25-72%, and one stroke risk factor ranged from 18 to 94%, indicating that the level of knowledge regarding recognition and prevention of stroke is generally poor.  In that review, two studies (Kothari et al. 1997; Carroll et al. 2004) assessed the knowledge in acute stroke patients, and both of these studies were done more than 15 years ago.  Knowledge assessed close to the time of the stroke represents both the patient’s pre-stroke and existing level of knowledge.  One of these acute studies (Kothari et al. 1997) assessed stroke patients within 12- 48 hours following their admission into emergency departments and found that almost 40% were unaware of stroke symptoms or risk factors. Of these, older patients had poorer knowledge of risk factors as compared to younger ones. The second acute study (Carroll et al. 2004) compared the stroke knowledge of four groups: patients at risk of stroke, patients with stroke/TIA within 48 hours of their admission in hospital, members of the general public, and nurses.  The stroke survivors demonstrated more gaps in their knowledge of risk factors than the other three groups.   Recently, there have been extensive public campaigns and media coverage to promote awareness about stroke symptoms using the FAST stroke symptom criteria (Face, Arm, Speech and Time to call 911).         18  In addition, there has been increasing focus on healthy lifestyles and risk factors to prevent stroke and heart disease in the last decade (Public Health Agency of Canada 2007; Heart and Stroke Foundation of Canada. 2018; Cardiac Health Foundation of Canada 2018). Given the greater attention on health promotion and stroke risk factors, it is timely to re-examine the current understanding of stroke survivors. Thus, the first objective of this study was to quantify the level of knowledge of stroke risk factors, symptoms, and stroke prevention among stroke survivors in the early post-stroke period. Knowing the risk factors of a stroke survivor early after their stroke can help with determining what education or services are required to reduce the risk of another stroke. The second objective was to assess health-related behaviours of individuals leading up to their stroke and identify predictors, i.e., age, sex, education, living status, stroke severity, including level of stroke knowledge.  Finally, the third objective of this study was to investigate the relation between pre-stroke health-related behaviours and cardiovascular risk burden.    2. 2 Methods  2.2.1 Study Design In this prospective cross-sectional study, we assessed a cohort of consecutively-admitted stroke patients within 48-72 hours of their admission.  A consecutively-admitted cohort can reduce the biases associated with convenient samples.  Participants, prior to receiving any formal stroke prevention education, were asked questions exploring their knowledge of stroke symptoms and risk factors, including health behaviours.  We obtained ethics approval from the University of British Columbia Office of Research Services- Clinical Research Ethics Board (Study number H15-01338).  This study used the STROBE Statement (Strengthening The Reporting of Observational studies in Epidemiology) (von Elm et al. 2007) to guide the reporting of its details (Appendix A).     19  2.2.2 Participants  All participants provided written consent. Participants were enrolled if they were 19 years or older; able to understand, follow instructions and communicate in English; neurologically stable (e.g., out of intensive care, alert to time, place and person); living independently prior to their stroke and admitted to a stroke unit. We also excluded patients with subarachnoid hemorrhage, severe aphasia, dementia and serious co-morbid conditions (e.g., end-stage renal disease, Parkinson's disease or multiple sclerosis).  2.2.3 Outcome Measurements A trained research coordinator measured blood pressure using as per American Heart Association standards (Pickering et al. 2005), Body Mass Index (BMI), the Montreal Cognitive Assessment (MoCA) (Nasreddine et al. 2005) and collected socio-demographic characteristics. Medical charts were reviewed for the following information: past medical history, plasma levels of total cholesterol, triglycerides, High-density lipoprotein (HDL), Low-density lipoprotein (LDL), Hemoglobin A1c (HbA1c), and NIHSS score (Brott et al. 1989) on admission to the stroke unit. All blood work was done immediately after the stroke as per standard of care (Boulanger et al. 2018). All measures used in this thesis are collated in the  Appendix B.   2.2.4 Knowledge Assessment Questionnaire  No standardized stroke knowledge assessment questionnaire exists.  Thus, we developed a tool to quantify the current level of knowledge of stroke patients based on existing literature (Wellwood et al. 1994; Kothari et al. 1997; Cheung et al. 1999; Carroll et al. 2004; Nicol and Thrift 2005; Eames et al. 2011; Yonaty and Kitchie 2012). The questionnaire was comprised of seven items covering knowledge of stroke warning signs, risk factors, and prevention practices aligned with the guidelines for common risk factors such as blood pressure management, physical activity, nutrition, and stress management. The total scores  20  ranged from 0 to 25 with higher scores indicating more knowledge of stroke risk factors, symptoms, and stroke prevention. The questionnaire was revised using iterative feedback from a wide range of stakeholders, including stroke patients and clinicians with backgrounds in neurology, physical medicine, nursing, physical therapy, and occupational therapy.  2.2.5 Health Behaviour We used the Health-Promoting Lifestyle Profile (HPLP II) (Walker et al. 1995), a 52-item self-report scale, to assess health behaviours in the areas of physical activity, nutrition, health responsibility, spiritual growth (e.g., openness to new experiences), interpersonal relationships (e.g., maintaining relationships with others), and stress management. Measurements from the HPLP II have established test-retest reliability  (r = 0.892) and internal consistency (alpha = .943).  A factor analysis confirmed a six-dimensional structure of health-promoting lifestyle by convergence with the Personal Lifestyle Questionnaire establishing its construct validity (r = .678) (Walker et al. 1995).  Patients were asked to reflect on their activities in the last week prior to their stroke using a 4-point Likert scale, with higher scores indicating better health behaviours.   2.2.6 Cardiovascular Disease Risk Score  We calculated the Framingham cardiovascular disease risk score (D'Agostino et al. 2008)  for each person. This well-validated score considers age, sex, smoking status, diabetes and cardio-metabolic risk factors for stroke such as HDL, total cholesterol and  systolic blood pressure, as well as pharmacological treatment (Zomer et al. 2011; Chia et al. 2015) (Appendix C).       21  2.2.7 Data Analysis  The G-Power 3.0.10 computer program was used to calculate the sample size for this study, based on multiple regression analyses quantifying the effect of level of knowledge and other variables on the health behavior dependent variable. We calculated that a maximum model of 10 variables would require 75 participants to detect a small effect (0.2), at an alpha of 0.05 with 80% power. We recruited 100 participants to account for potential missing data. Socio-demographics, disease-specific characteristics and knowledge levels were analyzed using descriptive statistics, with continuous variables reported as means and standard deviations, and categorical variables expressed as frequencies and percentages.  In addition, as a measurement of the cohort’s knowledge (objective 1), we calculated the proportion of patients with a history of conventional vascular risk factors (i.e., hypertension, dyslipidemia, smoking, diabetes) to the proportion of this group who were able to identify their co-morbid conditions as risk factors for stroke. We identified variables from the existing literature in constructing our regression model for objective 2.  Since age, education (Kang et al. 2010), sex, stroke knowledge (Wan, L. et al. 2014), living status (Sok and Yun 2011), and stroke severity (Krarup et al. 2008) are associated with health-related behaviours, these independent variables were included in the model as potential determinants of health-related behaviour represented by the HPLP II (dependent variable). We used a hierarchical multiple regression strategy and entered blocks of variables based on theoretical grounds.  Age and sex were entered at Block 1; education and living status at Block 2; stroke severity (National Institutes of Health Stroke Scale (NIHSS)) at Block 3, and knowledge at Block 4.  For objective 3, to investigate the relation between the health-related behaviour and cardiovascular disease risk, we first entered the six domains of the HPLP II (health responsibility, physical activity, nutrition,  22  spiritual growth, interpersonal relations, stress management) in Block 1 to identify potential predictors of the Framingham risk score (dependent variable).  We entered stroke knowledge in Block 2.  Since age, sex and several cardio-metabolic measures are already accounted for in the Framingham risk score, those variables were not included in the regression model.  For statistical analyses, the Statistical Package for the Social Sciences software (SPSS.) was used, employing an alpha of 0.05 (two tailed).  Checks were conducted to ensure no violation of the assumptions of normality, linearity, multicollinearity and homoscedasticity in the models.  2.3 Results  This study recruited one hundred participants with primarily mild stroke. The mean age of the sample was 66.6 ±13.6 years, the majority were male, approximately one quarter lived alone and more than half of them had at least high school education (Table 2.1).  A total of 554 patients were excluded:  95 were found not to have a diagnosis of stroke, 86 could not speak English, 71 had severe aphasia, 68 were medically unstable, 58 had dementia or severe cognitive impairment, 56 refused to participate,  44 were transferred or discharged before the research coordinator could see the patient, 30 had other severe medical conditions, 19 were outside of the study window, 15 required palliative care, 7 were not living independently prior to their stroke, and 5 were withdrawn after commencing the interview as these patients were too tired and unable to continue to participate in the study.    2.3.1 Participant's Knowledge of Stroke The participants scored low on stroke knowledge (Table 2.1). The most frequently known stroke symptoms were weakness in the arms/legs and difficulty with speech, while headache was the least commonly identified symptom (Figure 2.1). There was a discrepancy in the proportion of stroke patients with an established history of common vascular risk factors and their knowledge of those risk factors.  Of concern,  23  58 patients had an established history of hypertension, but only 18 of them identified hypertension as a risk factor (Figure 2.2).  Half of the participants cited regular exercise (51%) and healthy diet (51%) as a way to reduce blood pressure or maintain a healthy blood pressure level, while a smaller proportion (37%) cited taking antihypertensive medications.  Knowledge was limited regarding the amount of physical activity that adults should do to minimize risk of stroke.  Although participants recognized that exercise should be done regularly, only 22% had answers that aligned with the recommendations from national physical activity guidelines (120-160 minutes of moderate physical activity per week).  For dietary changes that may help to decrease the risk of stroke, patients listed decreased cholesterol (57%), followed by increased consumption of vegetables (52%).  Lastly, knowledge on strategies to manage stress was good, with participants identifying engagement in leisure activities (58%), followed by practicing meditation, yoga, or mindfulness (35%).   2.3.2 Health-Related Behaviours The final hierarchical regression model explained 27% of the variance in health-related behaviours  (Table 2.2).  Stroke knowledge explained an additional 13% of the variance in health-related behaviours, after controlling for age, gender, education, living status, and stroke severity (NIHSS) (Table 2.2).  In the final model, only age and knowledge were statistically significant, with knowledge recording a higher beta value (beta=0.411, p =.0001) than age (beta=0.284, p = 0.005) indicating that those who had better stroke knowledge or those with older age had better health behaviours.     24  2.3.3 Cardiovascular Disease Risk Score We were able to calculate a Framingham cardiovascular disease risk score for 92 participants. The eight that were excluded from the total sample of 100 were all missing HDL values; of these two with intracerebral hemorrhage were missing total cholesterol values as well. The missing participants were similar to the large cohort, being equal in the number of males and females, and having similar mean age and NIHSS scores. The domains of the HPLP II explained 12% of the variance in Framingham Risk Score. After entry of the knowledge variable, the total variance explained by the model was 15% (Table 2.3).  In the final model, only physical activity was statistically significant (beta value of - 0.316, p = 0.007) to improve the Framingham Risk Score.     25  Table 2.1 Demographic and Health-Related Behaviour Characteristics of the Participants Characteristics  Mean ± SD; or n (%) Age  66.6 ± 13.6 years  Male 60 (60%) Lives Alone   28 (28%) Education  At least High School Education 52 (52%) Caucasian 66 (66%) Ischemic Stroke  95 (95%) MoCA (max 30) 24.7 ± 3.8 NIHSS (max 42) 2.6 ± 3.0 BMI 27.0 ± 6.0 Systolic Blood Pressure  140.50 ± 23.0 mmHg Diastolic Blood Pressure  74.8 ± 11.6 mmHg HbA1c 6.3 ± 1.5 mmol/L LDL 2.4 ± 0.95 mmol/L HDL 1.3 ± 0.41 mmol/L Cholesterol  4.3 ± 1.1 mmol/L Triglycerides  1.4 ± 0.72 mmol/L Stroke Knowledge (max 25) 14.5 ± 5.1 HPLP II Total (max 208) 136.6 ± 21.8 Health Responsibility (max 36) 20.9 ± 4.6 Physical Activity (max 32) 16.1 ± 4.7 Nutrition (max 36) 23.6 ± 5.3 Spiritual Growth (max 36) 26.9 ± 5.7 Interpersonal Relations (max 36) 27.7 ± 5.2 Stress Management (max 32) 21.3 ± 5.1 CVD Risk Score (max 26) 15.6 ± 5.0 NOTE: Sample size of 100 except for CVD Risk Score (n=92).   Abbreviations: MoCA = Montreal Cognitive Assessment; NIHSS = National Institutes of Health Stroke Scale; BMI = Body Mass Index; HbA1c = Glycated Hemoglobin; LDL = Low Density Lipoprotein; HDL = High Density Lipoprotein; HPLP II = Health Promoting Lifestyle Profile II; CVD Risk Score = Framingham Cardiovascular Disease Risk Score; Max= maximum for standardized measure.     26   Figure 2.1 Knowledge of Stroke Symptoms. Percent who were able to identify each symptom (n=100)      Figure 2.2 Comparison of the number of participants with a history of risk factors versus those with a history and knowledge of the risk factor (n=100)      27  Table 2.2 Multiple Regression Analysis: Predictors of Health-Related Behaviour (Health Promoting Life Style Profile II) (n=100)  Models Variables R2  Adjusted R Square R Square Change Sig. F  Unstandardized Coefficients (B) 95.0% CI for B Standardized Coefficients (Beta) P value Lower Bound Upper Bound  Age      0.243 -0.075 0.562 0.152 0.132  Sex      -4.623 -13.41 4.163 -0.104 0.299 Model 1   0.037 0.017 0.037 0.164            Age      0.241 -0.073 0.556 0.151 0.131  Sex     -5.291 -14.065 3.483 -0.12 0.234  Education     6.631 -1.966 15.228 0.153 0.129  Living     7.747 -1.709 17.203 0.16 0.107 Model 2   0.089 0.051 0.052 0.063            Age      0.207 -0.102 0.515 0.129 0.187  Sex     -6.719 -15.379 1.94 -0.152 0.127  Education     5.91 -2.514 14.334 0.136 0.167  Living     6.873 -2.398 16.144 0.142 0.144  NIHSS     -1.67 -3.085 -0.255 -0.229 0.021 Model 3   0.139 0.093 0.05 0.014            Age      0.455 0.144 0.765 0.284 0.005  Sex     -4.775 -12.857 3.307 -0.108 0.244  Education     3.733 -4.147 11.613 0.086 0.349  Living     6.325 -2.271 14.921 0.131 0.147  NIHSS     -0.74 -2.128 0.648 -0.101 0.293  Knowledge      1.774 0.906 2.641 0.411 < 0.001 Model 4   0.269 0.221 0.13  <0.001           Dependent variable: Health Promoting Life Style Profile II  Abbreviations: Sig. F = Significance value of the F-test; NIHSS = National Institutes of Health Stroke Scale; Living = Living alone or with someone;  Knowledge = Stroke Knowledge 28  Table 2.3: Multiple Regression Analysis: Predictors of Cardiovascular Disease Risk (Framingham Risk Score) (n=92) Models Variables  R2  Adjusted R Square  R Square Change Sig. F  Unstandardized Coefficients (B) 95.0% CI for B Standardized Coefficients (Beta) P value  Lower Bound Upper Bound   Physical Activity     -0.36 -0.596 -0.125 -0.348 0.003  Nutrition     0.139 -0.083 0.36 0.149 0.217  Spiritual Growth     -0.033 -0.285 0.219 -0.038 0.794  Interpersonal relations      0.07 -0.167 0.306 0.074 0.56  Stress Management     -0.068 -0.322 0.185 -0.071 0.593  Health Responsibility      0.042 -0.215 0.3 0.04 0.746 Model 1   0.12 0.059 0.121 0.081            Physical Activity     -0.327 -0.562 -0.091 -0.316 0.007  Nutrition     0.157 -0.063 0.376 0.169 0.16  Spiritual Growth     -0.031 -0.28 0.218 -0.036 0.804  Interpersonal relations      0.098 -0.138 0.333 0.104 0.412  Stress Management     -0.072 -0.322 0.178 -0.075 0.568  Health Responsibility     0.08 -0.178 0.338 0.076 0.538  Knowledge Total      -0.189 -0.402 0.024 -0.195 0.081 Model 2   0.15 0.082 0.031 0.046           Dependent variable: Framingham Cardiovascular Disease Risk Score Abbreviations: Sig. F: Significance value of the F-test; Knowledge = Stroke Knowledge 29  2.4 Discussion 2.4.1 Knowledge of Stroke Patients This study aimed to quantify stroke knowledge and health-related behaviours in people with very recent stroke, and their relation with cardiovascular disease risk.  Despite focused efforts to promote awareness of stroke symptoms and risk factors amongst the public (Jones et al. 2010; Boulanger et al. 2018),  we found that the cohort of participant's in this cross-sectional study had poor knowledge about stroke symptoms and risk factors, and this may have possibly contributed to their stroke risk.  However, in contrast to a previous study (Kothari et al. 1997)  where only 26% had knowledge about weakness in the arms and legs as a stroke symptom, 64% of our study participants reported knowledge about weakness, and 57% identified problems with speech.  This may reflect the success of the recent educational campaign and media coverage about the FAST stroke symptom criteria (Face, Arm, Speech and Time to call 911).  Additional promotion of this campaign may be required and may consider educational materials in different languages to cover the diverse group who are at risk of a stroke.  It was highly concerning to find such large gaps in knowledge regarding participants’ own risk factors for stroke, particularly hypertension. This is in contrast to an older study, where 57% of the respondents from the general public with a history of hypertension identified hypertension as a risk factor for stroke (Pancioli et al. 1998).  Furthermore, in our participants, knowledge of health-related behaviours for stroke prevention was poor, with a lack of even basic stroke knowledge for some.  Public education campaigns from national organizations have focused on recognition of stroke symptoms.  However, we have identified an additional need to educate the public regarding stroke risk factors, specifically the causal relationship between blood pressure and stroke.  More knowledge on how much of stroke risk is modifiable may motivate individuals to better manage their blood pressure and additional risk factors.       30  In addition, our findings confirm the need to support efforts to link lifestyle behaviours to risk of stroke as part of primary prevention strategies (Meschia et al. 2014).   2.4.2 Association Between Stroke Knowledge And Health Behaviours This study demonstrated a positive association between stroke knowledge and health behaviours.  Of interest, the contribution of knowledge to health-related behaviour was of similar magnitude to that in a Chinese study in stroke patients with an established history of hypertension (Wan et al. 2014). We found a relationship between increasing age and better health behaviours.  However, this relationship is not consistent in other studies, with some finding no association between age and knowledge (Wan et al. 2014), and others finding a better level of knowledge in younger patients (Thilarajah et al. 2018). This relationship likely depends on the specific combination of health behaviours studied.  Our findings support guidelines recommending health-related behaviours to reduce stroke risk (Meschia et al. 2014). Education may improve health-related behaviours: one study conducted in a primary setting with hypertensive patients (Hacihasanoğlu and Gözüm 2011) found a dramatic improvement in health behaviours and cardiovascular risk factors in participants who received education on both medication adherence and health behaviours as compared with controls.  2.4.3 Factors Influencing Cardiovascular Disease Risk This study also supported the inclusion of physical activity in stroke prevention programs, given our finding of its relation to cardiovascular risk.  Of the other lifestyle domains, one might have expected nutrition to also contribute to the cardiovascular risk score, given the supporting literature (Tourlouki et al.  31  2009; Vatanparast et al. 2015).  The inconsistency of these findings may be related to the difficulty in self-reporting diet.   We have identified an urgent need to improve knowledge and health-related behaviour in patients at risk for stroke, and our findings should inform the development of novel educational interventions and services in the future. Public campaigns and media coverage on stroke should focus on both stroke symptoms and risk factors to be effective in efforts to prevent stroke and reduce its impact on individuals, families and the health care system.   The use of the Transtheoretical framework of  Behaviour Change (Prochaska and DiClemente 1983) may be useful in designing future programs to support positive and  lasting lifestyle changes as noted previously (Zhu et al. 2014).  According to this model, behavior change happens in stages and health care professionals are the facilitators in supporting the processes of behaviour change. A systematic review and meta-analysis (Parappilly et al. 2018) demonstrated the effectiveness of secondary stroke prevention interventions delivered by nurses on improving blood pressure, medication adherence, diet, physical activity and knowledge of stroke risk factors.  Motivational interviewing, goal setting, and action planning are some of the components deemed essential for successful behaviour change (Parappilly et al. 2018). Nurses and other health care professionals with additional training in stroke, stages of behaviour change, and behavioural change techniques could play a leading role in improving both primary and secondary prevention.    2.4.4 Limitations  We studied patients admitted to a stroke unit with mild-to-moderate events. Thus, our results may not be generalizable in people experiencing more disabling events or those with mild events who were discharged  32  from the emergency room or assessed in TIA clinics without hospital admission. The cross-sectional design of the study limits the ability to explore the causal effect relationship between knowledge, various risk factors, and health related behaviours in stroke survivors. Blood pressure was measured in the first days following stroke and may not be representative of a patient’s pre-stroke value; there are both physiological effects of stroke, as well as possible medication adjustments that may contribute to this true difference (Qureshi et al. 2007; Appleton et al. 2016).  However, we also used pre-admission medication lists to identify hypertensive patients in calculating the Framingham risk scores.  Some assessments utilizing self-report measures may be prone to recall and response bias.  While content validity of the knowledge questionnaire was established by a group of experts, other psychometric parameters were not established.  2.4.5 Future Research Directions Observations from our research may inform the design of a larger study to best identify educational needs for future educational strategies in different groups including different ethnic groups where English is not the first language. More longitudinal data is also needed to assess the impact of educational campaigns on health-related behaviours and stroke knowledge, and to compare educational strategies.   2.5 Conclusion People with recent mild-to-moderate strokes lacked even basic knowledge about stroke symptoms, risk factors and stroke prevention strategies.  Importantly, those with better stroke knowledge had better health-related behaviours and those with increased physical activity had reduced risk for cardiovascular disease.  Stroke prevention efforts may adopt a multimodal educational approach to address multiple risk factors among high-risk patients and stroke survivors to improve their health-related behaviours.     33  Bridging Statement I Overall Chapter 2 demonstrated that patients had poor knowledge and health-related behaviours post stroke which may have also represented the knowledge prior to their stroke. Additionally, this chapter showed that those who had better stroke knowledge had better health-related behaviours and those with increased physical activity had reduced risk for cardiovascular disease.  With this knowledge, it is important to understand what are the challenges of stroke survivors for participating in stroke prevention activities in the stroke recovery period, and what support, services or education might enable these activities. As it is well established that health-related behaviours can progress through stages of change (i.e., Transtheoretical Framework of Behaviour Change (Prochaska and DiClemente 1983), it would be ideal to explore how stroke survivors progress through the stages of change and overcome the barriers and facilitators in the stroke recovery period. Thus, this information can be obtained through a longitudinal qualitative study which is outlined in Chapter 3. Knowing their challenges and needs for health care services in accessing information and adopting lifestyle changes would be crucial in reviewing the current educational and stroke prevention programs in place to improve the health-related behaviours of stroke survivors.           34  Chapter 3: Exploring Perceptions of Stroke Survivors and Caregivers about Secondary Prevention: A Longitudinal Qualitative Study  3.1 Introduction Risk of stroke is highest in people who have experienced a previous stroke.  Approximately 25% of strokes occur in patients within five years of the original stroke (Hankey et al. 2007).  Additionally, recurrent strokes are generally more severe and lead to increased morbidity and mortality and higher rates of vascular cognitive impairment (Pendlebury and Rothwell 2009).  A very large international case-control study suggested that ten modifiable risk factors are associated with 90% of the risk of stroke (O'Donnell et al. 2010). Lifestyle changes and medication management play an integral role in effective secondary prevention through their impact on modifiable risk factors (Zhang et al. 2011; Mozaffarian et al. 2015).  A recent meta-analysis of 22 randomized controlled trials showed that lifestyle interventions were effective at lowering systolic blood pressure in patients living with stroke (Deijle et al. 2017).  While there is strong evidence for lifestyle interventions for risk factor modification, studies also show that the ability to sustain changes in lifestyle over time diminish in stroke survivors.  A study that evaluated the long-term impact of behavioral lifestyle modifications after stroke failed to sustain positive behavior changes over time (McManus et al. 2009).  Another study found that 70% of community-dwelling people post-stroke were still in the pre-contemplation or contemplation stage of incorporating exercise into their lifestyle (Garner and Page 2005). The Transtheoretical Model is a conceptual model for the processes for behavior change (Prochaska and DiClemente 1983) and has been cited most frequently as the basis for lifestyle modification interventions (Bully et al. 2015).  According to this model, individuals go through five stages when making a behaviour change: precontemplation, contemplation, action, maintenance, and  35  relapse.  Thus, understanding the stages of behavior change to lifestyle modification (e.g., contemplation, action) and the perceived barriers and facilitators that patients, families and caregivers are experiencing after they leave the hospital may help to develop effective long-term solutions.   Qualitative studies have previously explored the beliefs and lifestyle behaviour (Lawrence et al. 2010), perceptions of healthy lifestyles (Clague-Baker et al. 2017) and barriers to healthy lifestyle participation (Lennon et al. 2013) following stroke. Although two studies (Lawrence et al. 2010; Lennon et al. 2013) discussed the readiness to change among stroke survivors in terms of dietary changes and smoking cessation, the authors did not describe how these changes evolved over the stroke recovery period.   While one-time interviews are valuable, exploring changes in perspectives over time in the stroke recovery period have not yet been done and may shed light on factors that limit adherence to secondary prevention programs on a longer term. Therefore, the aim of this study was to explore how the perceived barriers and facilitators associated with participation in secondary prevention activities change over the early stroke recovery period among stroke survivors and their family members.     3.2 Methods 3.2.1 Design To obtain a rich perspective, we used a longitudinal qualitative research (LQR) design, which is an emerging methodology in which temporality is built into the research design making changes over time as the main focus for analysis (Thomson et al. 2003; Calman et al. 2013). The primary researcher, a female PhD student and a clinical nurse specialist in one of the study stroke units conducted all interviews. During the study period, the author reflected on her interview experience with one of the co-authors W.B. Mortenson experienced in qualitative research and discussed opportunities for improvement with the  36  interview techniques.  Ethical approval was obtained from the local university and associated hospital research ethics committees. This study used COREQ II framework (Tong et al. 2007) to guide the reporting of its details (Appendix D).   3.2.2 Participants Stroke survivors were recruited from a larger quantitative study (n=100 consecutive admissions) which utilized a single assessment within 2 days post-stroke to evaluate the patient’s metabolic profile and health-related behaviours. The quantitative study included patients admitted to stroke units in two hospitals with the diagnosis of stroke, who were age 19 years or older, able to understand and follow instructions and communicate in English. From this quantitative study sample, nineteen patients who met the eligibility criteria and who agreed to participate and the caregivers who lived with them and agreed to participate were enrolled in this qualitative study.   3.2.3 Recruitment The first half of the recruitment was done consecutively from the quantitative study enrollment as they approached their discharge date.  After the recruitment of 10 participants, we used purposive sampling from the quantitative sample to ensure we had variability in terms of participants’ sex, age, ethnicity, living status, and educational background.  Patients who went onto long-term care were excluded as they would not have the same opportunities to control their health behaviours. Enrollment continued until no new themes emerged from the interviews.   3.2.4 Data Collection  In this qualitative sub-study, each participant and their family member were interviewed twice following their discharge from the hospital (once at 2 weeks after discharge and then again at 6 months after the first  37  interview). These two time points were selected to ensure that the participants had the opportunity to reflect on necessary lifestyle changes and to participate in secondary prevention activities in the first six months post stroke.  Furthermore, as suggested in the classic Copenhagen Stroke Study, the largest longitudinal study to date, the majority of functional recovery occurs within the first 3- 6 months for people with stroke and little neurological or functional recovery is expected after 5 months (Jørgensen et al. 1995).   Interview sessions took place at the location of choice of the participants (e.g. home, coffee shop). We conducted individual interviews as it helps the participants to reveal their real feelings (Holloway and Wheeler 2010) and to accommodate the specific time post-stroke of each individual. Moreover, the stroke survivors and  their caregivers were interviewed separately.  The interview guide was developed in consultation with stroke experts in nursing, physical therapy, occupational therapy, neurology, as well as the research team. The semi-structured interview guide included open ended questions (Corbetta  2003) which elucidated the participant’s progress through their plans and actions to change their health behaviours over time in line with the Transtheoretical Model of Behaviour Change (Prochaska and DiClemente 1983). In addition, we explored the anticipated challenges for making changes to their lifestyle followed by prompts to explore diet, exercise, medication adherence, and other lifestyle habits, as well as the education they received about secondary prevention of stroke.  During the second interview, the participants were encouraged to reflect on their current lifestyle or what had changed for them since the last interview.  Before concluding the interview an opportunity was given to the participants to reflect if anything was missed in the interview to ensure obtaining a comprehensive understanding of their plans, actions, barriers and facilitators for lifestyle changes.  After the first interview, the participants were asked for their feedback about the appropriateness of the questions with no  38  revision required to the guide.  However, the interview guide was slightly modified during analysis after the initial interviews by removing a question that was redundant (Appendix E).  The interviews took approximately 30- 45 minutes and the digital recordings were transcribed verbatim.  Field notes were made after each interview describing the participant, setting of the interview, and researcher's reaction.   3.2.5 Data Analysis  We conducted a thematic analysis (Braun and Clarke 2006) to identify patterns (themes) within data. We used an inductive data-driven approach to coding that involved six steps (Braun and Clarke 2006). Using Microsoft excel transcripts were coded line-by-line resulting in a list of codes representing the meanings or patterns of their statements. Two researchers independently conducted the coding of a subset of data and then reached to an agreement about a coding guide that was applied to the remainder of the transcripts.  After all transcripts were coded, similar codes were grouped to form subthemes, with the consensus of both researchers.  In the last phase of the coding process, the researchers integrated the subthemes to identify main themes. Data were reviewed to ensure codes, subthemes and themes were well aligned and fit with each other and also reflected the meanings and patterns evident in the data set as a whole (Braun and Clarke 2006). The data set from the two interviews from stroke survivors and families were analyzed for themes emerging over time and contrasted cross-sectionally at each of the time points across the sample (Calman et al. 2013). During analysis, we used the Transtheoretical Model of Behaviour Change (Prochaska and DiClemente 1983) as a means to reflect upon the progression of stroke survivors transitioning through various stages of change in their health behaviour in the recovery period. The decision making process leading to the development of final themes was documented with an audit trail.      39  3.2.6 Trustworthiness We used three common strategies to promote trustworthiness in this study: triangulation, reflexivity, and member checking (Morrow 2005). Triangulation of participants involved interviewing the participants twice, interviewing both stroke survivors and their caregivers independently, and having prolonged interaction with the participants. For triangulation of researchers, there was regular discussion throughout the process with a second qualitative expert for consensus on the coding and themes. The research team used reflexivity by meeting regularly to discuss the data collection experience, appropriateness of questions, interview techniques and biases of the research team. We also maintained field notes and memos during the research processes to reflect on the experience. Finally, for member-checking, we summarized the findings from their first interview for both the stroke survivors and their caregivers at the beginning of the second interview and an overview of the common themes at the end of their second interview.   3.3 Results Nineteen patients with a diagnosis of stroke who were discharged from two acute care hospitals were enrolled in the study. There were 52 interviews conducted in total between 19 stroke survivors and their nine caregivers. Two stroke survivors and their caregivers did not participate in the second interview: one could not be contacted and the second stroke survivor experienced another serious medical issue. The stroke survivors were young and old (mean age 68 ± 12 years, range of 41 to 90 years), 58% were male, 63% were Caucasians, 26% lived alone, and 42% received inpatient or outpatient rehabilitation following discharge from the acute care hospital. Of the nine caregivers, there were six wives and three husbands of similar age and were living with their spouse. See Table 3.1 for demographic information.   We identified 3 main themes.  The participants are identified using pseudo names and stroke survivors are referred to as "S" and their caregivers as "C" with their respective study numbers, and the first interview as  40  T1 and the second as T2.  In general, the participants agreed with the summary of the findings that was provided to them.  As the summary did remind participants of their health behaviours from six months prior, this information may have facilitated participants to observe the contrasts in their current behaviour (if there were any).    3.3.1 Theme 1: A soul-searching experience  Some stroke survivors thought they had previously been leading a healthy lifestyle; however, this theme suggested that the stroke created fear about its causes and uncertainty about their future among many stroke survivors and caregivers. Stroke was a wake-up call to many stroke survivors and their caregivers which led to a soul searching experience in the early recovery period to explore its causes and ways to avoid another event (e.g., to adopt a healthy lifestyle).  As David, a 67 year old male stroke survivor, stated, " In my case now, as a matter of fact, they call it soul-searching talk, with the specialist and cardiologist. And they try to zero in exactly what we're trying to do" (S4-T1). Arnold, a 66 year old male stroke survivor reported, "It has come as a complete surprise. I thought I was reasonably fit, and had a healthy diet and wasn’t overweight and I'm looking for explanations from the specialist" (S12-T1).  His wife, Faye also shared the same response, "We were quite active and healthy before the stroke, which is why the stroke was quite a surprise to me." (C12-T1).   Nine stroke survivors and six caregivers expressed comments on their fear, uncertainty or search to avoid future cardiovascular or cerebrovascular events. Eighteen out of nineteen stroke survivors and eight caregivers expressed some worry as to what they could do to prevent another stroke in the immediate stroke recovery period. The uncertainty about the cause of stroke is evident in the words of Betty, a 61 year old female stroke survivor, who said, “Actually I’m not quite sure [of the cause]. The cause according to the doctor is there’s a vein which is, clogged and burst. But, other than that, I’m not sure what is the cause  41  of the stroke" (S18-T1). However, like most participants, she had gained more insight by six months, "What do I think caused the stroke? Maybe not enough movement, like, physical activities, or my blood pressure, well it wasn’t too high, but it could be part of the factor and the diabetes, maybe cholesterol." Thus, through this “soul-searching” experience, most stroke survivors and caregivers are perceived to have developed a better understanding about the cause of stroke and lifestyle changes required over the first 6 months once they were settled at home and reflected on their lifestyle or after having a discussion with their health care providers.    3.3.2 Theme 2: Old habits die hard This theme refers to the challenges and barriers stroke survivors and their caregivers anticipated and how they attempted to overcome those challenges in the early stroke recovery period to move along the stages of behavior change (from Pre contemplation, Contemplation, Preparation, Action, Maintenance, Relapse).  Some stroke survivors and their caregivers did not demonstrate a readiness to change at Time 1 and seemed to be in a Pre contemplation stage.  They were cautious about moving forward due to attitudes on aging, as well as a lack of reassurance from experts on what they could do physically.  Julie, wife of James, an 87 year old male stroke survivor, stated, "I perhaps have to suggest some realism from time to time. I think the realism, that is not so much anything to do with stroke, but just the aging process that we have to watch our step" (C3-T1). There was some fear and anxiety on what a safe level of activity would be, and a desire for reassurance from an expert that it was safe to exercise. While waiting for the specialist appointment after discharge, Allan, a 57 year old male stroke survivor, reported, "What level can I train at? I don't want to do anything that's gonna endanger myself. I've got two daughters to raise. I am not willing to push through a wall to get myself sick and die" (S1-T1). Similarly, Sandra, his wife commented, “The only stumbling block will be whatever he gets told from the doctor. If there is concern that exercise can create another stroke or another blood clot he needs to understand just where his limits are.” (C1-T1).   42   Most stroke survivors expressed a desire to resume their normal routines, but residual effects from the stroke, especially fatigue, balance and motor weakness were perceived to be barriers among eleven stroke survivors. As Tom, a 56 year old male stroke survivor, reported, "I still get tired easily, and my left leg, I still limp. And my left arm still gets weak at times" (S10-T2). Co-morbid conditions, such as pain related to arthritis, posed challenges for some survivors for participating in lifestyle modification activities. Some admitted that they could only walk inside the house, as walking outside was not possible due to pain or difficult environmental conditions. Two stroke survivors had a pre-existing heart condition (e.g., atrial fibrillation) which they were unaware of until they had their stroke.  Arnold, a 66 year old male stroke survivor, reported, "The concern at the moment I think is the heart issue and being able to maintain that level of exercise that I would like" (S12-T1). Thus, some perceived their newly diagnosed heart diseases (more than the stroke) as barriers to activity. Some of the other barriers expressed by stroke survivors and caregivres to adopting a healthy lifestyle included inclement weather, transportation, peer pressure, fear of falling, holiday season, short term memory loss, and a lack of time due to care-giving responsibilities.   Lack of education came across as a barrier to adopting healthy lifestyle for some. Only 6 of the 19 stroke survivors recalled that they received education about stroke in the hospital before discharge. Although some found the information useful and comprehensive, others were not in a state to absorb the information in the acute recovery phase. Eleanor, a 64-year-old female stroke survivor, commented, “the dietician and a lot of nurses came. I was so much in pain that time, I don’t even remember” (S14-T1).   Eighteen of the nineteen stroke survivors had developed some plans for moving forward (Preparation stage) by Time 1. Of the 17 stroke survivors interviewed second time, four had not undertaken any changes  43  to the physical activity level due to co morbid conditions and one could not completely quit smoking/drugs but the rest of the stroke survivors had undertaken activities indicative of the Action stage by  Time 2.    Most stroke survivors had a sense of what lifestyle modifications were required to prevent another stroke. The commonly addressed lifestyle modifications were diet, weight loss, activity level and smoking.  Some stroke survivors expressed anxiety about the anticipated changes to their lifestyle soon after stroke. Their plans for lifestyle changes after stroke included a reduction in salt intake, eating out less, cooking healthy choices, walking more, biking outdoors, and smoking cessation. Eleanor, a 64 year old female stroke survivor, shared her plan of making changes to her eating habits to reduce weight and control blood pressure, "We make salami, and everything, and my favourite was cheese, so I cut it too, just a little bit at a time and I try to avoid fried stuff " (S14-T1). Although many stroke survivors learned to manage their challenges, it was often perceived to be difficult in the recovery period. After 6 months of putting her plans into action, the same stroke survivor commented on the difficulties of maintaining these behaviours and her occasional relapses, "Sometimes I crave sausage […]. Maybe I cheat once every month or two months. I think I can keep on doing, but once in a while, it’s hard."  3.3.3  Theme 3: Making a fresh start  This theme refers to the transition to actions to adopt a healthier lifestyle and how some factors acted as facilitators in supporting these changes. To adopt a healthy lifestyle, eighteen stroke survivors focused on improving diet or exercise to reduce weight, cholesterol and blood pressure, while two focused on smoking cessation and one focused on curbing illicit drug use. Six stroke survivors who had a prior history of heart disease or stroke had already made some changes to their lifestyle prior to their stroke. They had a disciplined approach to adopting healthy lifestyle changes since these events and both the stroke survivors  44  and their caregivers felt that they maintained those changes after the current stroke as stated by James, 87 year old male stroke survivor and his wife (S3) (Table 3.2).   It was evident from the comments at the two time points that most stroke survivors gained confidence and determined new ways to adopt healthy lifestyles over time indicating that readiness is a factor in adopting changes to their lifestyle (stroke survivor, Edith (S16) adopted hiking pole, while Paul (S2) regained walking with less fear, Table 3.2). While some made changes to their lifestyle such as eating healthy, quitting smoking, and engaging in physical activity immediately after stroke, some stroke survivors contemplated for a while and when they were ready and when circumstances were appropriate, they attempted changes later in the recovery period.  Smoking cessation was a behaviour change that two stroke survivors attempted to tackle over time (see Tom (S10) in Table 3.2). However, a few stroke survivors were still contemplating making lifestyle changes after six months of stroke.  The support of the caregivers through their persistent and positive attitude was perceived as a critical facilitator in changing and sustaining healthy lifestyle behaviours among stroke survivors (see Paul (S2) who reported that the support of his wife, Anita was instrumental in Table 3.2). The awareness, beliefs and positive attitude of stroke survivors towards a healthy lifestyle to prevent a future stroke also had a large impact on how they embraced lifestyle modifications in the recovery period as reported by Paul, a 77 year old male stroke survivor, "Because at least exercise makes your blood circulation better and your muscles work more and you gain less weight. And these are the things which help me… overall health of the body" (S2-T1). Some of the other motivating factors noted in this study were care-giving responsibilities, being able to drive again, and being independent in making changes to their lifestyle.   45  Finally, their curiosity to learn about various lifestyle changes was noted as a facilitator. Most stroke survivors and family members indicated that they would have appreciated more information from the experts about lifestyle modifications once they were settled at home. To learn about stroke prevention specifically about diet and physical activity most stroke survivors and their caregivers, including both younger and older participants, preferred the internet rather than attending classes citing transportation and accessibility to the clinic as some of the barriers to attend classes. As Sally, a 57 year old female stroke survivor stated, "probably online is easiest, because you don’t have to be on somebody else’s schedule" (S5).  Four participants suggested learning in a group setting with stroke survivors who have similar issues.  Anita, the wife of Paul (S2), a 77 year old male stroke survivor said, "I like if there is any class or group discussion or any professional can give us some more information, with their experience." Three stroke survivors with the cardiac issues had previously attended a healthy heart program and found the program highly effective and would like to continue to attend the program.               46  Table 3.1 Demographic Characteristics of the Stroke Survivors   Study Number and Pseudo Name Age Range in Years Gender Marital Status Education MoCA NIHSS S1* Allan C1 Sandra 55-60 M  Married High School and Above 25 1 S2* Paul C2 Anita 75-80 M   Married High School and Above 28 3 S3* James  C3 Julie 85-90 M   Married High School and Above 29 6 S4 David  65-70 M  Married High School and Above 26 3 S5* Sally C5 John 55-60 F   Married High School and Above 18 6 S6 Andrew 60-65 M Single Less than High school 30 0 S7* Heather  C7 Danny 60-65 F   Married  High School and Above 18 4 S8 Peter      70-75     M Single High School and Above 25 2 S9* Alice  C9 Aaron     75-80     F Married High School and Above 26 3 S10 Tom 55-60 M Single High School and Above 23 0  47  S11* Jim C11 Daisy 65-70 M Married Less Than High School 19 0 S12* Arnold C12 Faye 65-70 M  Married High School and Above 28 1 S13 Frank  85-90 M  Married Less Than High School 22 0 S14 Eleanor 60-65 F  Married Less Than High School 22 3  S15 Esther  70-75  F  Single  Less Than High School 20 2 S16 Edith  70-75 F Single High School and Above 28 0 S17 Harry  40-45 M Single High School and Above 25 2 S18* Betty  C18 Thomas 60-65 F  Married  High School and Above 26 7 S19 Agnes  85-90 F  Single  High School and Above 29 0 Abbreviations: MoCA = Montreal Cognitive Assessment; NIHSS = National Institutes of Health Stroke Scale Note:  * spouse also was interviewed          48  Table 3.2 Theme 3: Making a fresh start   Sub themes  Participant Code  Time 1(2 weeks after discharge)  Time 2 (6 months after first interview) Maintaining previous healthy lifestyle  S3, 87 year old male stroke survivor and his wife C3 " I’ve always done a certain amount of exercise, we eat a good diet largely as a result of doing healthy heart program… 3 years ago where the dietician was clear about what we should be eating." (S3-James) "Well, he is incredibly disciplined and does about an hour and half of exercises every other day, and the other day he walks on a program that cardiologist getting his heart rate up to a certain rate and down, so he’s done that for… years and, so he’s just followed that." (C3- Julie) From Precontemplation to Actions to adopt healthier  lifestyles    S16, 71 year old female stroke survivor  "I was getting out maybe once or twice a week on my bicycle, but I haven’t done that now for a number of months. And I may not get out there until the weather, for another couple of weeks cause it’s too miserable out there." (S16-Edith)  The same stroke survivor said, "I have been active all through the spring and summer. I did not buy a new bicycle, but I did buy were the hiking poles. So, that instead of riding more, I have been walking more." (S16-Edith) S2, 77 year old male stroke survivor  "I stopped going to the gym, I don’t know… a bit… probably lazy but because I thought, maybe if I fall on the treadmill and break something." (S2-Paul) The same survivor said, "Actually sometimes I go and walk by myself. Of course I have to be careful, but I never had the occasion to fall down." (S2-Paul)  49  S10, 56 year old male stroke survivor "I used to smoke about 10-12 a day. So, now I’ve cut down to about three or four. Well, that’s my process of eventually getting my long-term goal is actually to quit. " (S10-Tom) The same gentleman quit smoking, "Yah, I completely quit." (S10-Tom) The influence of family/friends/health care providers      S2, 77 year old male stroke survivor and wife C2 "As he mentioned, he is a little lazy about exercising. It’s not new, I have seen this for a long time. I have to push him to do it and I will do. " (C2-Anita) "She is very helpful. She keeps reminding me, she keeps pushing me, and that’s helpful."  (S2-Paul).                 50  3.4 Discussion In this study, stroke survivors and their caregivers provided clear examples to demonstrate their perceived barriers and facilitators associated with participation in secondary prevention activities and how their behaviour changes happened through various stages over the early stroke recovery period. We learned that stroke survivors and caregivers are curious to learn about the cause of stroke, their future and  type of lifestyle changes required to prevent another stroke (i.e. soul-searching experience). Participants would have appreciated more education from experts about the causes of their stroke and the lifestyle changes they needed to make once they returned home from the hospital, as some others have noted (Lawrence et al. 2010) especially regarding exercise and diet to reduce weight, to reduce cholesterol and to control blood pressure. Our results suggest expediting follow-up stroke clinic appointments for stroke prevention education or integrating such content in outpatient or home-based rehabilitation may be more effective for most patients than education during the acute phase. Such education may help stroke survivors move quickly from the contemplation to action stage. Therefore, clinicians in various settings should take every opportunity to raise awareness and support stroke survivors to adopt healthy lifestyles for future stroke prevention.   Both stroke survivors and caregivers in this study reported that they developed a better understanding of the reasons for stroke in consultation with specialists and family doctors over time in the recovery phase. In contrast, a previous study explored the stroke survivor's (between 1 and 24 weeks post-stroke) and their carers’ perceptions of healthy lifestyles and found that over half of the participants were not aware of the risk factors of stroke (Clague-Baker et al. 2017). The improved understanding noted in our longitudinal study is perceived as the rationale for transition through behaviour changes adopted by many stroke survivors.    51  Stroke survivors and caregivers had different preferences for learning such as learning with peers who have similar issues and wanting to learn using internet in their own convenience. Also, the preference for healthy heart programs expressed by those who had the previous experience demonstrates the value of making such programs available to stroke survivors. Attending group programs such as cardiac rehabilitation programs which incorporate exercise and education may provide an opportunity for socialization, give them a sense of belonging, heighten their confidence to exercise post stroke and improve their understanding about their health condition (Hillsdon et al. 2013). This knowledge would inform the development of various educational strategies and cardiovascular disease prevention programs that are innovative and incorporating various learning styles and needs of stroke survivors and their caregivers.     As reported in previous qualitative studies (Simpson et al. 2011; Lennon et al. 2013), fear of falling, inclement weather, feeling fatigue, and balance difficulties were noted to be barriers for participating in physical activity in this study. Additionally, effects of the co-morbid conditions and new onset of cardiac conditions limited their participation in lifestyle modifications in this study. However, in this longitudinal study, the stroke survivors are perceived to gain confidence over time and utilize adaptive strategies to engage themselves more in physical activity over the stroke recovery period.   By following patients and caregivers through this longitudinal study, we learned that the attitudes and readiness of participants about lifestyle modifications evolved through different stages of change over time in line with the Transtheoretical framework of  Behaviour Change (Prochaska and DiClemente 1983). In the acute phase, most stroke survivors were not ready for education in the hospital as they were in pain or received too much information. By the 6-month time point, most stroke survivors had passed through the  52  pre-contemplation stage and were making a “fresh start” going through preparation, action and maintenance phases for some health-related behaviour changes (Prochaska and DiClemente 1983). These findings direct health care providers to customize approaches that address the respective stages of readiness to change and design a longer term approach though the rehabilitation stage and beyond to support stroke survivors for secondary prevention of strokes.  The use of the Transtheoretical framework of  Behaviour Change (Prochaska and DiClemente 1983) in designing future programs that are stage based for secondary prevention of stroke may be needed to support positive and  lasting lifestyle changes as demonstrated previously (Zhu et al. 2014). Motivational interviewing, goal setting, action planning are some of the components deemed essential for successful behaviour change to enable risk factor modification (Green et al. 2007; Sit et al. 2007; Flemming et al. 2013) and may be included in the education and stroke prevention programs. The use of self-selected and meaningful activities may also help stroke survivors to engage and sustain themselves in stroke prevention activities (Barclay-Goddard et al. 2012; Woodman et al. 2014) and may motivate caregivers to support their caregivers affected with stroke to adopt behaviour changes.  A meta-regression found that intention formation, providing feedback on performance, self-monitoring of behaviour, goal setting, and self-regulation techniques improved behaviour changes for diet and physical activity (Michie et al. 2009). Therefore, these techniques may be considered in future education and stroke prevention programs.  In contrast to findings of previous studies where families were overprotective and inhibiting stroke survivor's participation in daily activities (Hillsdon et al. 2013; Nicholson et al. 2014), our data suggest that caregivrs were supportive and can play an important role in improving healthy lifestyles. Overall, we found that the caregivers and stroke survivors had similar perspectives across all three themes. Future stroke prevention programs may consider adopting a patient-family centered approach in designing programs considering their learning preferences for their engagement and support with these programs.   53   3.4.1 Strengths   The main strength of this study is the longitudinal nature of the study that was an essential element of the research design to understand the transformation of health behaviours in the stroke recovery period. Another strength of this study is that it included caregivers along with stroke survivors, which provided a deeper and more accurate understanding in terms of what families are doing to make changes to their lifestyle.  3.4.2 Limitations  The transferability of this study findings is limited to  individuals with mild stroke; however, the participants still experienced various challenges in adopting healthy lifestyles. Future research should explore different methods of providing secondary prevention and enabling behavior change in a mild stroke population and also in a more disabled stroke population. Also, future research is needed that truly assesses if behavior change has been made e.g. use of accelerometers for exercise monitoring. There may have been biases introduced with only one researcher undertook all the interviews. Lastly, with the initial consecutive sampling followed by purposive sampling, we recognize that there is a balance between biased selection and ensuring variability in the sample.    3.5 Conclusion In this study, we learned that the fear and anxiety associated with the onset of stroke prompted survivors and their caregivers to undertake a soul searching journey into exploring the causes of stroke and lifestyle changes needed to prevent a future stroke. Despite experiencing some barriers, stroke survivors adopted lifestyle changes transitioning through different stages of change. Stroke prevention education and interventions from experts would be helpful later in the rehabilitation phase (once at home) and adopting a  54  patient-family centered approach may assist stroke survivors and their caregivers in the uptake of secondary stroke prevention activities.                         55  Bridging Statement II Building on the findings in Chapter 2, we attempted to understand what stroke survivors are actually doing to prevent another stroke and the perceived challenges and barriers of stroke survivors and their caregivers for participating in secondary stroke prevention in Chapter 3. We learned that the onset of stroke prompted both the survivors and their caregivers to learn more about stroke and they adopted lifestyle changes transitioning through different stages of change in the stroke recovery period despite facing some challenges. Stroke survivors and caregivers expressed the need to receive stroke prevention education and interventions from experts later in the recovery phase once settled at home.   Of all the health care disciplines, nurses play a larger role in educating stroke survivors and their caregivers on various aspects of their disease process and actively engaging them in stroke prevention programs in various clinical settings. Chapter 2 focused on a cross sectional design to understand the association between knowledge, health related behaviours, and cardiovascular disease risk while chapter 3 focused on exploring the perspectives of stroke survivors and caregivers. Thus, neither chapter 2 or 3 informed the causal nature of stroke prevention programs. Chapter 4 will assess randomized controlled trials to understand the causal nature of the nursing interventions on the risk factor modification for the prevention of stroke in stroke survivors. This information can help to design future stroke prevention and education programs. Thus, chapter 4 focuses on examining the effectiveness of secondary prevention programs where nurses have a primary role in enabling risk factor modification.       56   Chapter 4: Effectiveness of interventions involving nurses in secondary stroke prevention: A systematic review and meta-analysis  4.1 Introduction Patients with stroke or transient ischemic attack (TIA) are at increased risk for new events. The annual risk for recurrent stroke after an ischemic stroke or TIA is approximately 3-4%, and the long-term risk of all stroke is approximately twice the risk of all cardiac events (Dhamoon et al. 2006). These high rates of recurrence reinforce the need to optimize modifiable risk factors including hypertension, dyslipidemia, smoking, diet, physical activity, alcohol consumption, psychosocial stress and depression (O'Donnell et al. 2010).  Moreover, evidence-based guidelines recommend the importance of multimodal approaches for secondary prevention of stroke/TIA (Kernan et al. 2014).  Recommendations for secondary stroke prevention should be addressed at all appropriate health-care encounters, including in the emergency department, and during acute inpatient care, rehabilitation, reintegration into the community and follow-up by primary care practitioners (Wein et al. 2018).   There is an increasing focus on people living with various chronic conditions and self-management support programs emphasizing the patient's active role in managing their illness (Canadian Nurse's Association 2012). All members of the health care team are expected to facilitate engagement of stroke survivors in stroke prevention programs. However, nurses play a larger role in informing stroke survivors and their caregivers on various aspects of their disease process and actively engaging them in stroke prevention programs at each encounter in various clinical settings. As stated by the Registered Nurse's Association of Ontario (RNAO 2010), registered nurses help clients to address risk factors influencing their health by  57  applying various behavioral and psychological interventions, linking them to community supports, and collaborating with other team members.   A comprehensive review of all studies where nurses are primarily employed in assisting with secondary stroke prevention interventions will help to summarize the current state of knowledge about the impact of nurses in optimizing the multiple aspects of secondary prevention and will help to identify knowledge gaps. Additionally, how nursing skills are used for secondary prevention is not well characterized, and clarification may help to direct future interventions.  We examined the effectiveness of secondary prevention programs with a primary role for nurses in risk factor modification for the prevention of stroke. We performed a systematic review and meta-analysis of relevant randomized controlled trials (RCTs). This study (1) explored the strengths and gaps in the literature on the role of nurses in secondary stroke prevention, and (2) quantitatively assessed the effects of interventions in which nurses have a primary role on the modification of medical risk factors (blood pressure, cholesterol, low-density lipoprotein (LDL), high-density lipoprotein (HDL), blood glucose), behavioral risk factors (e.g., physical activity, smoking, alcohol, diet, medication adherence), and improvement in knowledge of risk factors among stroke survivors.   4.2 Methods The investigation conforms with the principles outlined in the Declaration of Helsinki (Rickham 1964). The study protocol was predefined, proposed and approved as part of a formal doctoral proposal open to the public with oversight from three senior researchers prior to any literature searching.  We followed the steps outlined in the Cochrane handbook for systematic reviews (Higgins and Green 2011) as a guide to establish the PICO, the search strategies and undertake the meta-analysis. We utilized the more detailed PEDro Scale (Physiotherapy evidence data base), rather than the Cochrane Risk of Bias Tool.   58   4.2.1 Eligibility Criteria We determined participants (P), interventions (I), comparator (C), and outcomes (O) prior to initiating the study. The question for this study is: Among adult patients diagnosed with stroke/TIA, do secondary prevention programs where nurses having a primary role affect risk factor modification? Included RCTs had secondary stroke prevention interventions where the role of a nurse was defined (e.g., supporting patients with individual goal-setting).  Studies needed to have baseline and post-intervention results with continuous data to calculate standardized mean difference (SMD), or post-intervention categorical results to calculate Odds Ratios. We included interventions at any time after their stroke/TIA and analyzed the first set of outcomes collected after the end of the intervention (it was not common to have a second longer follow-up).  The comparator was usual care, or in some studies, a control with less activities (e.g., a single lifestyle counseling session, educational materials).  The main outcome measures included in this review were: 1) medical risk factors, 2) behavioral risk factors, and 3) knowledge of risk factors among stroke survivors. Medical risk factors included both systolic (SBP) and diastolic blood pressure (DBP), HbA1c, lipids, and cholesterol, while behavioral risk factors included dietary changes, physical activity, medication adherence, smoking cessation and alcohol use. We excluded studies focusing only on the spouses or caregivers, studies comparing two types of interventions without a true control group, and studies where more than half of the study participants did not have a diagnosis of stroke.   4.2.2 Search Strategies We finalized a comprehensive literature search for English language articles published in peer-reviewed journals using major electronic databases (Medline, CINAHL, EMBASE, PsychINFO, Cochrane Database  59  of Systematic Reviews, Web of Science, Proquest Dissertation) and including articles published until the end of 2017. Our Medline search strategy is summarized in Table 4.1. Some of the MeSH terms and keywords included “stroke”, “secondary prevention”, and “nursing.” The studies were screened for redundant articles by entering them into a computer-based reference management system (RefWorks 2009). A second reviewer (BS) screened abstract titles and abstracts.  See Appendix F for excluded studies.  Full texts of selected studies from the initial screening were obtained. When there were discrepancies, two reviewers (Beena Parappilly and Brodie Sakakibara) discussed the study to reach a decision (Figure 4.1). The reference lists of these articles were hand-searched for additional relevant references. We attempted to contact researchers to learn about unpublished trials to reduce publication bias and also to clarify additional data-related questions during analysis.   4.2.3 Data Extraction Data from selected studies were extracted into a study specific data extraction table by two reviewers (BP and BS).  The PEDro scale (The Physiotherapy Evidence Database) was utilized to assess for the potential bias involved in the methodology of the studies. When available, we used the scores posted on the PEDro website.  PEDro scores range from 0 to 10 and trials with scores ≥ 6/10 on the PEDro scale are indicative of moderate to high quality trials (The Physiotherapy Evidence Database). When scores were not available, both reviewers assessed the study quality independently (Appendix G).   . 4.2.4 Statistical Analysis Studies reporting continuous data were meta-analyzed using the standardized mean difference (SMD) (Copenhagen: The Nordic Cochrane Centre 2014). SMDs were pooled across studies for each outcome to obtain the pooled effect size. When medians and interquartile ranges were reported, the data were converted to means and standard deviations (Wan et al. 2014).  We characterized the magnitude of the  60  SMD as small (0.20), moderate (0.50) or large (0.80) (Cohen 1988). With dichotomous data, pooled odds ratios (OR) and 95% CI were estimated using the Mantel-Haenszel method. We estimated the effects of continuous data by finding the differences between the pre intervention and immediate post intervention results. The I-squared (I2) value was used to quantify the statistical heterogeneity (Higgins and Thompson 2002).  I2 values of 25%, 50%, and 75% were considered low, moderate, and high heterogeneity, respectively. When statistical heterogeneity was 0% to 50%, the fixed- effects model was utilized. The random- effects model was used when I2 values were over 50%. The p value was set at 0.05.  Forest Plots were created to graphically illustrate the results.  All meta-analyses were conducted using RevMan 5 (Copenhagen: The Nordic Cochrane Centre 2014).   4.2.5 Sensitivity Analysis Sensitivity analyses were undertaken as part of assessing the robustness of the results. For this we excluded studies of lesser quality (less than 6 on the PEDro scale) (The Physiotherapy Evidence Database).   4.3 Results  4.3.1 Search Results and Study Description Of 895 titles, 16 studies met inclusion criteria (Figure 4.1). Sixteen studies (14 independent trials) meeting inclusion criteria were included, with a total of 3568 stroke and TIA patients. Four references (Hornnes et al. 2011; Hornnes et al. 2014; Olaiya et al. 2017; Olaiya et al. 2017) reported findings based on two studies. Sample sizes ranged from 36 (Flemming et al. 2013) to 533 (Olaiya et al. 2017). Below we present the quality of the evidence using the PEDro scores and summarize key elements from the TIDieR checklist to describe the interventions (Hoffmann et al. 2014).     61  4.3.2 Quality of Evidence PEDro scores ranged from 4 (Jönsson et al. 2014)  to 8 (Ellis et al. 2005; Kerry et al. 2013; Hornnes et al. 2014; Olaiya et al. 2017). Five studies had low quality PEDro scores of less than 6 (Sit et al. 2007; Flemming et al. 2013; Mackenzie et al. 2013; Wang et al. 2013; Jönsson et al. 2014).  4.3.3 Where the interventions took place The studies were undertaken in the United Kingdom (Ellis et al. 2005; Kerry et al. 2013), Sweden (Jönsson et al. 2014; Irewall et al. 2015), Denmark (Hornnes et al. 2011; Hornnes et al. 2014), USA (Allen et al. 2009; Flemming et al. 2013), Canada (Green et al. 2007; Mackenzie et al. 2013), China (Sit et al. 2007; Wan et al. 2016), Israel (Nir et al. 2004), Australia (Olaiya et al. 2017; Olaiya et al. 2017), and Taiwan (Wang et al. 2013). Most patients had just been discharged from hospital following their event, although some were 3 months (Ellis et al. 2005), or 9 months (Kerry et al. 2013)  post-event. In seven studies (Allen et al. 2009; Hornnes et al. 2011; Flemming et al. 2013; Jönsson et al. 2014; Irewall et al. 2015; Wan et al. 2016; Olaiya et al. 2017) researchers enrolled hospitalized patients, followed by interventions and outcome measurements in the community, while a few initiated studies from home (Sit et al. 2007), through stroke prevention clinic (Ellis et al. 2005; Green et al. 2007; Kerry et al. 2013; Mackenzie et al. 2013; Wang et al. 2013), or rehabilitation centre (Nir et al. 2004) (Appendix H).   4.3.4 Who provided the intervention Interventions were conducted by stroke nurses (Green et al. 2007; Jönsson et al. 2014), senior nursing students (Nir et al. 2004), stroke nurse specialist (Ellis et al. 2005), Advanced Practice Nurse (Allen et al. 2009), Clinical Nurse Specialists and Nurse Practitioners specialized in stroke and with special training in motivational interviewing (Mackenzie et al. 2013), stroke trained nurses with the training in motivational interviewing (Flemming et al. 2013), stroke nurses with no formal training in motivational interviewing  62  (Irewall et al. 2015; Wan, L. et al. 2016), and trained study nurses (Sit et al. 2007; Hornnes et al. 2011; Kerry et al. 2013; Wang et al. 2013; Olaiya et al. 2017).    In six studies, nurses acted alone in delivering the interventions and therefore it was a new role for the nurses (Ellis et al. 2005; Sit et al. 2007; Hornnes et al. 2011; Kerry et al. 2013; Wang et al. 2013; Wan et al. 2016), although some worked in collaboration with physicians (Allen et al. 2009; Flemming et al. 2013; Jönsson et al. 2014; Irewall et al. 2015; Olaiya et al. 2017). A few studies included other allied health disciplines, including a dietitian and an exercise physiologist (Flemming et al. 2013), physical therapist (Allen et al. 2009), nutritionist and social worker (Green et al. 2007), physical therapist, occupational therapist and social worker (Nir et al. 2004).   Most nursing interventions included specialized skills such as motivational interviewing and providing individual education on lifestyle changes including diet, physical activity, tobacco and alcohol use, the importance of medication compliance and its relevance to secondary prevention (Nir et al. 2004; Ellis et al. 2005; Sit et al. 2007; Green et al. 2007; Allen et al. 2009; Hornnes et al. 2011; Flemming et al. 2013; Kerry et al. 2013; Mackenzie et al. 2013; Wang et al. 2013; Jönsson et al. 2014; Irewall et al. 2015; Wan et al. 2016; Olaiya et al. 2017). In some studies, nurses supported patients with individual goal-setting and action planning to facilitate risk factor modification in alignment with chronic disease management principles (Sit et al. 2007; Green et al. 2007; Flemming et al. 2013; Wan et al. 2016; Olaiya et al. 2017). All studies focused on multiple components such as education, care planning, collaborating with physicians and other health team members, providing written and verbal information, medication review, arranging GP appointment, and sending discharge summary to the GPs.   63  Two studies (Sit et al. 2007; Green et al. 2007) adapted stroke knowledge questionnaires from other studies and two studies (Allen et al. 2009; Wang et al. 2013) developed questionnaires for their study. We included questionnaires focused on the knowledge of risk factors for this meta- analysis, although one study (Allen et al. 2009) combined knowledge of stroke symptoms, risk factors and actions taken.  4.3.5 The modes of delivery of the intervention The mode of delivery of interventions varied across the studies. Most studies focused on face to face meetings for delivering the interventions (Nir et al. 2004; Ellis et al. 2005; Allen et al. 2009; Hornnes et al. 2011; Flemming et al. 2013; Jönsson et al. 2014; Wang et al. 2013; Olaiya et al. 2017) and a few had telephone based only (Irewall et al. 2015; Wan et al. 2016), both individual and telephone based interventions (Kerry et al. 2013; Mackenzie et al. 2013), group sessions (Sit et al. 2007), and individual and group sessions (Green et al. 2007). Three studies involved both patients and their caregivers in the interventions (Nir et al. 2004; Green et al. 2007; Kerry et al. 2013).  The control group received only usual care in eleven studies (Nir et al. 2004; Ellis et al. 2005; Sit et al. 2007; Hornnes et al. 2011; Flemming et al. 2013; Kerry et al. 2013; Wang et al. 2013; Jönsson et al. 2014; Irewall et al. 2015; Wan et al. 2016; Olaiya et al. 2017). Some studies provided some additional aspects, although they were not of the same magnitude as the intervention (e.g., single lifestyle counseling session (Hornnes et al. 2014); educational materials (Allen et al. 2009); or physician assessment (Mackenzie et al. 2013).  No studies provided a true attention control where the amount of time and attention of the control group were matched with the intervention group.     64  4.3.6 Intensity of the interventions The timing of the interventions ranged from 1-2 months (Sit et al. 2007) to 12 months after discharge (Flemming et al. 2013; Irewall et al. 2015). The duration of each intervention session ranged from 30 minutes to 3 hours.   4.3.7 Tailoring of the intervention All studies followed a specific protocol in terms of interventions and follow up assessments, however care plan and the focus of the interventions were individualized to match the risk factor profile of the participants.   4.3.8 Adherence and fidelity Most studies did not explain if they assessed intervention adherence or fidelity. One multicenter study (Mackenzie et al. 2013) did describe the use of motivational interview scripts and investigator team meetings to facilitate consistency in recruitment and follow up processes by the case managers.  4.3.9 Adverse events In general, adverse events or deaths over the study were similar between groups.  Six studies recorded vascular events and/or deaths and found similar events between groups (Allen et al. 2009; Hornnes et al. 2011; Kerry et al. 2013; Jönsson et al. 2014; Irewall et al. 2015; Olaiya et al. 2017). Four studies had small numbers of serious adverse events (1-2) in one group or the other (Green et al. 2007; Flemming et al. 2013; Mackenzie et al. 2013; Wan et al. 2016). Some vascular events or hospitalizations are expected when stroke patient are followed over several months given the age and multi-comorbidities that these patients have.  One study (Nir et al. 2004) reported no hospital admission for either group over the study and another study (Sit et al. 2007) reported that 25% and 19% had dropped out in the intervention group and  65  control group respectively citing hospitalization as one of the reasons for dropping out. Adverse event information was not reported in two studies (Ellis et al. 2005; Wang et al. 2013).   4.3.10 Effect of interventions involving nurses on controlling medical risk factors Meta-analysis of seven studies (n=1941) (Ellis et al. 2005; Hornnes et al. 2011; Flemming et al. 2013; Kerry et al. 2013; Mackenzie et al. 2013; Irewall et al. 2015; Olaiya et al. 2017) found no significant effect on SBP (SMD = -0.03 [95% CI= -0.26, 0.21], I2=82%, P=<0.05; Z= 0.21, P=0.83) using a random-effects model (Figure 4.2). Pooled results from five studies (n=1372) (Ellis et al. 2005; Hornnes et al. 2011; Kerry et al. 2013; Mackenzie et al. 2013; Irewall et al. 2015) demonstrated no significant effect on DBP using a random- effects model (SMD = 0.22[95% CI= -0.20, 0.641]; I2=93%, P=<0.05; Z=1.02, P=0.31) (Figure 4.2).  However, one study (Mackenzie et al. 2013) was an outlier, with a large effect size favouring the control group for both SBP and DBP, while the other studies had small effect sizes favouring the experimental group. In addition, this study (Mackenzie et al. 2013)  may have been weighted by outlier data; mean SBP and DBP increased by 7.2 and 22.2 mmHg, respectively, but median SBP and DBP decreased by 22 and 11 mmHg, respectively. After removing this study, the model produced a small but significant reduction of both SBP (SMD = -0.14 [95% CI= -0.23, -0.05], I2= 0%, P=0.51; Z= 3.04, P=0.002) and DBP  (SMD = -0.16 [95% CI= -0.27, -0.05], I2 = 0%, P=0.66; Z=2.93, P=0.003) using a fixed-effects model.  4.3.11 Effect of interventions involving nurses on controlling behavioral risk factors Three studies (n=425) using continuous data showed that the interventions had a small, significant effect on improving diet in a fixed-effects model (SMD= -0.21 [95% CI=-0.40, -0.02], I2=33%, P=0.22; Z= 2.14, P=0.03) (Nir et al. 2004; Sit et al. 2007; Wan et al. 2016) (Figure 4.3). Five studies (n=1233) reported on the number of physically inactive people post-intervention (Sit et al. 2007; Green et al. 2007; Allen et al.  66  2009; Flemming et al. 2013; Olaiya. et al. 2017). A pooled random-effects model found that the intervention reduced the proportion of physically inactive people (OR = 0.60 [95% CI= 0.37, 0.97], I2=56%, P=0.06; Z=2.08, P=0.04). Two studies (n=270) reported that the interventions had a significant effect on improving medication adherence in a fixed-effects model (SMD=0.41 [95% CI=0.17, 0.65], I2=0%, P=0.76; Z= 3.32, P=0.0009) (Sit et al. 2007; Wan et al. 2016).    The role of nurses in smoking cessation through education and counseling was explored in six studies  (Green et al. 2007; Allen et al. 2009; Flemming et al. 2013; Hornnes et al. 2014; Jönsson et al. 2014; Olaiya et al. 2017). A fixed-effects model including these six studies (n=1592) found no significant effect on smoking cessation (OR = 1.12 [95% CI= 0.87, 1.45], I2=0%, P=0.87; Z= 0.94, P=0.36). The role of nurses in reducing the use of alcohol was explored in three studies and found no significant effect (OR= 0.86 [95% CI= 0.46, 1.60], I2=0%, P=0.50; Z=0.49, P=0.63).   4.3.12 Effect of interventions involving nurses on improving knowledge of risk factors of stroke A random-effects model of three studies (n=516) (Sit et al. 2007; Green et al. 2007; Wang et al. 2013) on the role of nurses in improving the knowledge of stroke risk factors found a significant effect (SMD = 0.73 [95% CI= 0.28, 1.18], I2=83%, P=0.003; Z=3.20, P=0.001). (Figure 4.3).     4.3.13 Sensitivity Analyses Sensitivity analysis was undertaken by eliminating two studies (Flemming et al. 2013; Mackenzie et al. 2013) that scored less than 6 on the PEDro scale for blood pressure outcomes. This resulted in significant fixed-effect models for SBP (SMD = -0.13 [95% CI -0.22, -0.04], I2=0%, P=0.54; Z=2.86, P=0.004) and DBP (SMD = -0.16 [95% CI  -0.27, -0.05],  I2=0%, P=0.66; Z= 2.93, P=0.003).  However, these results are likely a result of removing one study (Mackenzie et al. 2013) which was an outlier with a large effect  67  supporting the control group.  After excluding two studies of lower methodological quality (Flemming et al. 2013; Jönsson et al. 2014) for the outcome of smoking cessation, the model (4 studies, n=1165) still did not demonstrate a significant result (OR = 1.15 [95% CI 0.86, 1.54], I2= 0%, P=0.87; Z= 0.94, P=0.35).   4.3.14 Effect of  interventions involving nurses on controlling other risk factors Standardized mean differences and odds ratio for other outcomes with 2 studies are considered less robust results due to the small number of studies. Costs were not assessed in any of the studies.    68  Table 4.1 Search Strategy Search Steps Searches Results 1.        exp nursing care/ 128477 2.        exp Nurses/ 81882 3.        Nursing/ or rehabilitation nursing/ 51892 4.        (Nurse* or Nursing).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier, synonyms] 644405 5.        1 or 2 or 3 or 4 644956 6.        ((cerebral or cerebrovascular or brain or vascular) adj3 (accident* or infarct*)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier, synonyms] 54170 7.        (stroke* or CVA)mp. 252654 8.        exp stroke/ 111905 9.         6 or 7 or 8 285223 10.    secondary prevention/ or tertiary prevention/ 17838 11.    ((previous or prior or second* or subsequent or tertiary or recurren*) adj3 (prevent* or avoid)).mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier, synonyms] 59232  69  Search Steps Searches Results 12.    rehab*.mp. [mp=title, abstract, original title, name of substance word, subject heading word, keyword heading word, protocol supplementary concept word, rare disease supplementary concept word, unique identifier, synonyms] 168108 13.    10 or 11 or 12 225399 14.    5 and 9 and 13 1543 15.    randomized controlled trial.pt. 455529 16.    controlled clinical trial.pt.  92233 17.    randomized.ab. 405256 18.    placebo.ab. 187117 19.    drug therapy.fs. 1999990 20.    randomly.ab. 286588 21.    trial.ab. 420857 22.    groups.ab. 1772679 23.    15 or 16 or 17 or 18 or 19 or 20 or 21 or 22 4158427 24.    exp animals/ not humans.sh. 4433718 25.    23 not 24 3593245 26.    14 and 25 409 27.    Limit 26 to english language  383     70   Figure 4.1 Flow Diagram       71  Figure 4.2 Medical Risk Factors: Effect sizes, standardized mean differences and forest plots     72   Figure 4.3 Knowledge and Behavioural Risk Factors: Effect sizes, standardized mean differences (SMD), odds ratio (OR), and forest plots     73  4.4 Discussion   This systematic review and meta-analysis highlights the finding that interventions involving nurses are effective and play an important role in the secondary prevention of stroke.  Nurses played a primary role in interventions that resulted in significant reductions of both SBP and DBP, as well as improvement in diet, physical activity, medication adherence and knowledge of stroke risk factors. The common interventions where nurses played a major role included: 1) education and counselling on lifestyle modifications, medical risk factors and medication adherence, 2) individual goal-setting and action planning, 3) encouragement of patients to visit their family physicians and collaborating with physicians, and 4) providing written and verbal information to patients. It was clear that nurses were facilitating complex interventions that often required individual tailoring and progression, however, little details of the tailoring was documented in the studies.  Registered nurses and nurse practitioners have the highest proportion of direct interaction among all health-care providers and play a key role in managing chronic illnesses, health promotion and disease prevention (CNA 2011). This places nurses in an ideal position to reinforce self-management skills at each encounter to influence stroke survivors to make healthy lifestyle changes.   Importantly, interventions involving nurses in this study led to the reduction of blood pressure. The mean difference of SBP from six studies in this study was found to be 2.84 mm of Hg and the mean difference of DBP from four studies was found to be 2 mm of Hg. Studies have demonstrated a linear relationship between SBP and stroke incidence (Ishikawa et al. 2007; Hornsten et al. 2016) with higher SBP leading to a higher stroke risk. The linear relationship starts with SBP at 130 mmHg (Ishikawa et al. 2007) or 140 mmHg (Hornsten et al. 2016). The average resting SBP in the trials included in this meta-analysis was 136 mmHg. Additionally, a review of cohort studies and meta-analysis of trials of the effects of BP-lowering drugs on stroke indicate that a 10 mm Hg reduction in SBP is associated with a reduction in risk of stroke of 31% (Lawes et al. 2004). Since SBP has shown a linear relationship to stroke incidence after 130 or 140  74  mmHg, interventions involving nurses in this meta-analysis have the potential to reduce SBP substantially and thus improve quality of life for stroke survivors.   From this review, it is evident that interventions involving nurses that had an impact on reducing blood pressure involved a number of key tasks including counseling, education, medication review and collaborating and communicating with physicians, rather than a single responsibility, such as managing pharmacotherapy for blood pressure control. Thus, utilization of nurse-led programs in the community may be a cost-effective approach to multimodal chronic disease management, and may have merits over depending on primary care practitioners and other more costly resources.    Lifestyle interventions carried out primarily by nurses, or by nurses in collaboration with other team members, had a significant impact on improving physical activity, diet, medication adherence and knowledge of stroke risk factors in this study. An interdisciplinary team combined with nursing interventions such as education, counseling, goal-setting and action planning, may have helped to achieve these results.    In contrast, nursing interventions did not appear to help patients to quit smoking or reduce use of alcohol. Although the nurses participating in this analysis had dedicated stroke training, only two studies specifically stated that the nurses who provided the interventions had specialized training in motivational interviewing. Only one study included caregivers in the intervention, and this may be essential in supporting stroke survivors with their efforts with smoking cessation and alcohol use.   Readiness to initiate and sustain changes may be enhanced in recovery both for stroke survivors and their caregivers, and may enhance receptiveness to nursing interventions. As one study noted (Berra 2010), trust  75  and communication developed between professional and patient may be essential for behavioral change. Additionally, a systematic review and meta-analysis exploring the influence of the patient-clinician relationship on healthcare outcomes suggests that the patient-clinician relationship has a small, but statistically significant effect on healthcare outcomes (Kelley et al. 2014).  The Transtheoretical model (Prochaska and DiClemente 1982) of behavior change asserts that the individuals progress from their current stage to the next stage by adopting behaviour changes and the trust between the client and the therapist are key to facilitate behaviour change. Only one study in this meta-analysis focused on assessing the progression of stroke survivors from contemplation to action (Green et al. 2007).  However, nurses' interactions with stroke survivors in the recovery phase may provide an opportunity to establish trust and develop rapport with survivors, which in turn may facilitate acquisition of self-management skills and progression from contemplation to action in terms of their behaviour changes.  4.4.1 Limitations  Methodological differences, which highlight the breadth of possibilities in which nursing interventions may be implemented, limits comparisons between studies in this review. There is variation in study design, interventions, mode of delivery, frequency and duration of intervention and follow up, sample sizes, instruments used, involvement of caregivers, and variability in the members of the team and training and experience of the nurses. Individual studies may be biased by a lack of an attention control group.  The heterogeneity of the study populations, which include those with TIA, ischemic stroke and/or hemorrhagic stroke with a spectrum of functional impairments and in different phases of recovery, may further impact our study’s conclusions.     76   4.5 Conclusion This meta-analysis shows the benefit of interventions involving nurses on improving blood pressure, diet, physical activity, medication adherence, and knowledge of risk factors of stroke as part of secondary stroke prevention.  While the methodological differences limit the comparisons between studies included in this review, the education and leadership skills of nurses should be employed in designing programs that reinforce active self-management skills through education and counseling, goal-setting, action planning, and collaborating with other team members in supporting stroke survivors with lifestyle changes. The cost-effectiveness of nurse-led programs, the effectiveness of other interdisciplinary team members, and how they may complement nursing interventions, need to be explored in future studies.                  77  Chapter 5: Overall discussion, synthesis, and future directions   5.1 Overview Stroke risk can be substantially reduced by addressing modifiable risk factors and adopting a healthy lifestyle (Chiuve et al. 2008; O'Donnell et al. 2010). As highlighted in this thesis, studies have demonstrated the impact of a healthy lifestyle in higher risk individuals on reducing risk of stroke (Chiuve et al. 2008; Larsson et al. 2014; Larsson et al. 2015). Therefore, the identification of these risk factors is the first step in taking effective strategies for the primary prevention of stroke.   Stroke survivors have a high chance for recurrent events. Recurrent strokes are disabling and costly to the health care system.  However, secondary prevention programs with a focus on modifying stroke risk factors through health-related behaviours can decrease the risk of recurrent stroke by up to 80% (Hackam and Spence 2007). An important component of secondary prevention is improving the awareness of stroke symptoms and risk factors in stroke survivors (Maasland et al. 2007). However, as explained in chapter 1, many studies have shown that stroke survivors lack knowledge and they fail to adhere to treatment following stroke (Jones et al. 2010). There are only a few studies that have assessed the knowledge of stroke patients in the acute phase in the past (Kothari et al. 1997; Carroll et al. 2004). While these studies demonstrated the magnitude of the lack of knowledge of stroke symptoms and risk factors among stroke survivors, it is important to find out if the recent campaign on stroke has made any impact on the stroke knowledge in stroke survivors.  While exploring the stroke knowledge, it would be important to understand the association between stroke knowledge, health-related behaviours and socio-demographic factors and how stroke knowledge and health behaviours influence cardiovascular disease risk in stroke survivors.    78  Additionally, research has shown that the interest among stroke survivors for making changes in their lifestyles seems to diminish over time and it is unclear how the perceptions and lifestyle changes evolved over the stroke recovery period.  Finally, to support stroke survivors with their secondary prevention strategies, it is important to understand the skills required of the nurses to effect behaviour modification.  Therefore, we performed this research to gain a deeper understanding of the stroke knowledge, the current health-related behaviours, cardiovascular disease risk in stroke survivors and potential ways to improve these and the role of nurses in stroke prevention programs.   5.2 Integrated Findings with Implications for Practice This section will demonstrate how the findings from various studies included in this thesis complement each other and contribute to improving stroke prevention. Following the principles of integration for the mixed methods study, the findings from each study on related topics will be integrated explaining its implications for improving the current stroke prevention programs and topics for future research.   5.2.1 Knowledge of stroke Over the course of this research, particularly in Chapter 2, we learned that stroke survivors lack knowledge about symptoms, risk factors and stroke prevention. Additionally, Chapter 2 demonstrated a discrepancy in the knowledge of risk factors among patients who have those risk factors for stroke. Their knowledge of risk reduction strategies, i.e., ways to reduce blood pressure, to increase physical activity and to improve diet as per Canadian guidelines, was also lacking.  This chapter demonstrated that knowledge of symptoms, risk factors and stroke prevention predicted 27% of the variability in the health-related behaviour of stroke patients. Although this association does not indicate a causal relationship, it indicates  79  that those who had more knowledge engaged in better health behaviors prior to stroke. Additionally, those stroke survivors who were physically active had a better CVD risk score. We learned in Chapter 3 that stroke survivors and caregivers are curious to learn about stroke and ways to prevent stroke. They expressed interest in learning from experts once they returned home from the hospital, especially regarding exercise, diet, ways to reduce cholesterol and to control blood pressure. To improve knowledge of stroke risk factors and to improve lifestyle modification, Chapter 4 showed that nursing interventions such as education and counseling on lifestyle modifications, medical risk factors and medication adherence were important.   Based on these findings, it is clear that more education and support are required for stroke survivors and caregivers to help them facilitate health-related behaviour changes. Therefore, we suggest that current stroke prevention programs should be strengthened with efforts to incorporate a multimodal approach addressing multiple modifiable risk factors with stroke education and support for lifestyle modifications among high-risk individuals, survivors and their families. The knowledge acquisition may ultimately help them to improve the risk factors for stroke. It is important and encouraging to note that in Chapter 2, stroke survivors demonstrated better knowledge of stroke symptoms as compared to older studies and this may reflect the success of the recent educational campaign and media coverage initiated by the Heart and Stroke Foundation of Canada on teaching public about FAST criteria (Face, Arm, Speech and Time to call 911). Future educational campaigns should focus on stroke risk factors in addition to acute stroke symptoms as part of the stroke prevention program. The information should be available in different languages to address the educational needs of the diverse populations.     80  5.2.2 Delivery of Secondary Stroke Prevention Programs In Chapter 3, we learned that stroke survivors and caregivers were curious to learn about stroke once they returned home from the hospital, indicating that the timing of education is important. In hospital, the participants were not ready for education and the information was not retained, indicating that the readiness of stroke survivors and caregivers is key to learning and engagement in behaviour changes. Similar findings are reflected in a Cochrane review (Forster et al. 2012) that educational strategies that actively involve patients and carers with planned follow-up have a positive effect on improving stroke knowledge and patient mood. These findings suggest expediting the follow-up appointments with family physician or at the stroke clinic for stroke prevention education, or integrating stroke education in outpatient or home-based rehabilitation.   Canadian Best Practice Recommendations for Secondary prevention of stroke suggest that persons at risk of stroke should receive individualized information and counseling about possible strategies to modify their lifestyle and risk factors (Wein et al. 2018). In Chapter 3, we learned that stroke survivors transitioned through various stages of stage while adopting health behaviour changes. These findings direct health care providers to assess the educational needs of the high-risk individuals, stroke survivors and their families/caregivers, customize approaches to meet their needs, and address the respective stages of change in supporting them for prevention of stroke. The Transtheoretical model (Prochaska and DiClemente 1982) of behavior change could be employed as a framework in designing intervention programs to improve behaviour changes. These findings also reinforce the need to strengthen the community-based resources to support stroke survivors in building self-management skills and supportive networks.    81  To further emphasize the importance of individualizing education and intervention that is demonstrated in Chapter 3, the studies used in meta-analysis showed that nurses used individual goal-setting and action planning to facilitate risk factor modification. This reinforces that nurses may have to let go of the traditional “top-down” patient education model, instead engaging clients to use self-management skills such as problem solving, decision making, action planning, resource utilization, and finally formation of a patient–provider partnership (Lorig and Holman 2003).   The role of peer education in secondary stroke prevention is gaining attention. In Chapter 3 in this thesis, stroke survivors expressed an interest to learn with peers. Programs like Masterstroke could be considered for that purpose. The Masterstroke program (White et al. 2013) incorporates group education and exercise for community dwelling stroke survivors who found the social aspect of mingling with their peers enjoyable. An RCT (Kronish et al. 2014) conducted on peer education used peer leaders with similar socioeconomic backgrounds and health problems as the stroke survivors for leading group education using the Chronic Disease Self-Management Program model. As a result, stroke survivors learned and practiced self management skills in a supportive group environment resulting in a reduction of systolic blood pressure. In a fiscally constrained health care system, peer leaders could potentially be employed to offer education on secondary stroke prevention to stroke survivors and their caregivers.   Based on the findings of the meta-analysis in chapter 4, nursing roles could focus on multiple components: education, care planning, collaborating with physicians and other health team members, providing written and verbal information, medication review, and sending discharge summary to the GPs. Thus, a comprehensive multi-modal approach incorporating these interventions are perceived to be essential for the success of the future stroke prevention programs.   82  In chapter 3, we also learned that participants preferred to use the internet for education and prevention strategies, given its convenience. Web based programs are gaining attention in the area of stroke prevention as the technology advances and the internet becomes readily available. One study (Kim et al. 2013) used a web-based stroke education program that included video lectures and quizzes on healthy lifestyle practices and medication adherence, with an automatic feedback system, and links to other websites with stroke-related information.  As a result of the web-based program, the experimental group made improvements in the area of diet, exercise, sense of control and motivation for the stroke patients and caregiver mastery for the caregivers. Although it was a small study (n=36), web-based stroke education program is an emerging field and should be considered for stroke survivors and their family members. Additionally, in Chapter 4, telephone follow-up is well integrated into stroke prevention programs, either as a sole strategy or in combination with individual face to face or group strategies. Telephone follow-up interventions are a convenient way of reaching out to stroke survivors for education (Wan et al. 2016) and could be considered in designing future stroke prevention programs.   5.2.3 Progression of Lifestyle Changes  In chapter 3 we learned that with the information and support from health care providers stroke survivors transitioned through stages of health behaviour changes. The Transtheoretical model of behaviour change (Prochaska and DiClemente 1983) was used to determine the stages of change the stroke survivors were in as they focused on behaviour change in the early stroke recovery period. The knowledge of behaviour change model also helps health care providers to determine an individual’s readiness and attention to behaviour change (Prochaska and DiClemente 1983). Since researchers have modeled the Transtheoretical model of behaviour change in designing intervention programs to improve healthy habits, this model could be modeled in designing future secondary stroke prevention programs.   83   Another framework that could be considered for designing behaviour change interventions is the Behaviour Change Wheel (Michie et al. 2011). This framework focuses on the capability, opportunity, and motivation (COM-B system) of the individuals and the interventions such as modeling, training, education, and persuasion. While certain interventions and policies may be used to address the capability, opportunity and motivation of stroke survivors to adopt behaviour changes as outlined in this model, the Transtheoretical model of behaviour change (Prochaska and DiClemente 1983) serves the purpose of guiding stroke survivors through various stages of change in adopting behaviour modification and was a better fit for this thesis.  In chapter 4 we learned that nurses used motivational interviewing to support stroke survivors in adopting successful behaviour changes in the recovery period. These findings reinforce the importance of considering behaviour change techniques such as motivational interviewing in the development of future stroke prevention programs. A systematic review on motivational interviewing for behaviour change in people with cardiovascular risk factors show that motivational interviewing is an effective approach for eliciting the person's intrinsic motivation for behaviour change (Ski and Thompson 2013). Clinicians in various settings should capitalize on opportunities to raise awareness about behaviour modification and be trained in using effective behaviour change techniques to support stroke survivors and high-risk individuals to support their move from the contemplation to action stage in adopting behaviour changes.   5.2.4 Role of Nurses in Secondary Stroke Prevention This thesis has demonstrated the role of nurses in chronic disease management. While Chapter 2 indicated that stroke survivors lack stroke-related knowledge, Chapter 3 showed their enthusiasm to learn about  84  stroke prevention to improve their lifestyle. In addition, in chapter 3, patients felt that they needed expert advice to give them permission to move forward.  Finally, in Chapter 4, we learned that the interventions where nurses had a primary role were beneficial in improving knowledge, blood pressure, diet, physical activity, and medication adherence. Hence, it is possible that nurses can be a facilitator to help educate high risk people, stroke patients and families to move forward in their journey towards better health behaviours. In facilitating the behaviour changes among patients, nurses may use the interventions used in the meta-analysis in Chapter 4, which included counseling, education, medication review and collaborating and communicating with physicians and interdisciplinary members. Additionally, the nurse's interactions with stroke survivors and caregivers in the recovery phase provide an opportunity to establish trust and develop rapport with them, which in turn may facilitate acquisition of self-management skills for the management of a chronic disease like stroke. Based on these findings, advanced practice nurses such as nurse practitioners, Clinical Nurse Specialists, and nurses specialized in stroke should be considered in delivering future stroke prevention programs.   The role of nurses as educators and its impact in chronic disease management program have been studied previously. Similar to the findings in the meta-analysis in chapter 4, (Ghisi et al. 2014) conducted a systematic review to learn the impact of patient education on cardiac patients and learned that patient education was mostly delivered by nurses, and it helped to improve knowledge, physical activity, dietary habits, and smoking cessation. Similar to the approaches used in the meta-analysis in this thesis, nurses in the previous systematic review (Ghisi et al. 2014) also used lectures, group discussions, individual telephone follow-up and counseling and included multiple topics per intervention. Therefore, these educational methods may be considered in designing future stroke prevention programs.    85  Similar to the intervention programs observed in the meta-analyis in this thesis, in another study involving patients with hypertension (Hacihasanoglu and Gozum 2011), nurses provided six monthly individual education sessions (four times during clinic visits and two home visits) and monthly phone calls with a focus on medication adherence, healthy lifestyle behaviours, and information about hypertension. Those who received education on both medication adherence and health behaviours had better blood pressure control, health behaviours and improved BMI in comparison to those who received education only on medication adherence. Thus, utilization of trained nurse-led programs in the community that are similar to some studies noted in the meta-analysis in Chapter 4 may be a cost-effective approach to stroke prevention program.   5.2.5 Interdisciplinary Approach For Secondary Stroke Prevention The role of interdisciplinary approaches in stroke prevention programs needs to be considered.  In Chapter 4, nurses acted alone in delivering the interventions or worked in collaboration with other team members and had a significant impact on risk factors and lifestyle.  A similar collaborative approach is demonstrated in the Integrated Care for the Reduction of Secondary Stroke (ICARUSS) model (Joubert et al. 2009). In this model, the stroke specialist, nurse coordinator, and patient's general practitioner worked collaboratively in supporting stroke survivors and their carers with education and ongoing support for medication adherence and lifestyle modifications in achieving blood pressure control, improving BMI and physical activity. Thus, an interdisciplinary and collaborative approach should be considered in future stroke prevention programs.   Although Chapter 4 did not show that secondary stroke prevention interventions were effective in smoking cessation, the qualitative study showed that stroke survivors were interested in smoking cessation and were  86  making efforts with smoking cessation. There is a vast amount of literature supporting the benefits of smoking cessation for improved cardiovascular outcomes and thus smoking cessation should be included in the stroke prevention programs and supported by all health care providers. The interdisciplinary team members should advise patients, family members, and caregivers about the harmful effects of smoke (Wein et al. 2018). Only one study in the meta-analysis used nurses with training in motivational interviewing and providing tailored advice on smoking cessation. Nurses would benefit from training on motivational interviewing and smoking cessation in their basic training. Trained professionals and caregiver involvement for support would be required in achieving smoking cessation. Using a stage based approach based on the Transtheoretical model (Prochaska and DiClemente 1982) of behaviour change could be used in facilitating smoking cessation.   5.2.6 Family Involvement In Secondary Stroke Prevention The importance of involving family in the secondary prevention of stroke is gaining attention and this dissertation recognized the significant role of family members and caregivers in supporting stroke survivors. In chapter 3, family members were found to be keen on learning and supportive of stroke survivors with the lifestyle changes. In the meta-analysis, in three studies nurses had involved family members/caregivers either in education or for monitoring blood pressure of the stroke patients. Although the impact of family involvement is not quantitatively assessed in this thesis, the effectiveness of family support is evidenced in another study called EUROACTION (Wood et al. 2008). In the EUROACTION study, nurses worked with patients with cardiac issues and their family members providing education on lifestyle modifications and engaging them in exercise resulting in lifestyle changes for both patients and families. The patient and family members should be made aware of the guidelines and expectations in terms of healthy lifestyle standards, i.e., minimum amount of exercise recommended to prevent stroke.  87  This awareness may improve the uptake and maintenance of health behaviours after stroke. Thus, a patient-family centered approach to designing future stroke prevention program would be essential.  5.3 Strengths of this research This dissertation helps to bridge the knowledge gap regarding stroke survivors’ stroke knowledge and its relationship with health-related behaviours and cardiovascular disease risk. It provides novel information on barriers to health-related behavior adoption after stroke that can be incorporated into secondary prevention programs to improve the uptake and durability of interventions. Overall the results provide new knowledge that serves as a foundation for reviewing current stroke prevention programs, and designing novel approaches in improving knowledge and health behaviours for the prevention of stroke. The use of mixed methods research design is a notable strength of this thesis. The findings from Chapter 2 and 4 and themes from Chapter 3 complement one another to enhance the credibility of the findings in deriving implications for future practice and research.   The design of the study in Chapter 2 is important to consider in this context. The study design that involved inviting all eligible members to participate through consecutive sampling over a long period of time for chapter 2 helps to reduce the risk of potential biases that may be associated with other sampling techniques such as convenience or snowball sampling.   Another key strength of this dissertation is that it is the first to explore the changes in perceptions over time of stroke survivors and their caregivers about barriers and facilitators for participating in secondary stroke prevention activities using a longitudinal qualitative study in the early stroke recovery period. This knowledge will inform the development of strategies that may help to develop sustainable approaches to lifestyle modifications for stroke prevention.   88   Lastly, this dissertation conducted a meta-analysis exploring the role of nurses in improving stroke risk factors for the secondary prevention of stroke for the first time. The results supported the role of nurses facilitating stroke prevention programs. A meta-analysis is the highest level of evidence upon which to base decision-making in health care. The rigor in conducting the meta-analysis makes the findings valid and generalizable in the field of research.   5.4 Limitations of this research There are limitations to the research studies included in this thesis. The main limitations are related to the sampling and design of each study. We have shown that stroke survivors lack knowledge about stroke symptoms, risk factors and strategies for stroke prevention in chapter 2. However, the exclusion of patients with a language barrier, or with cognitive or speech impairment will limit the generalizability of the study findings, including the meta-analysis. The heterogeneity of the study participants, which include those with TIA, ischemic stroke and/or hemorrhagic stroke, with a spectrum of functional impairments, may further impact our study’s conclusions. In chapter 2 and 3, we included a sample with mild stroke and have not explored the knowledge and behaviour changes in a more severely affected stroke population.   In terms of the study design, Chapter 2 is a correlational study that explored the association between stroke knowledge, health related behaviours, and cardiovascular disease risk, while Chapter 4 used RCTs to explore the causal effect relationship between nursing interventions, risk factor modification, and knowledge of stroke risk factors.  While Chapter 2 and 4 are experimental studies, Chapter 3 is a qualitative study.  In Chapter 2, blood pressure was measured in the first days following stroke and may not be representative of a patient’s pre-stroke status. We used self-report for assessing knowledge and health behaviour in Chapter 2 and individual interview for understanding behaviour changes in Chapter 3  89  and cannot guarantee that the findings were not influenced by the social desirability bias. The use of technology like accelerometers may be more accurate in capturing physical activity. While our knowledge questionnaire used a group of experts to provide content validity, further testing is required to establish reliability or other aspects of validity.   Among the studies included in the meta-analysis, there was variation in study design with its interventions, mode of delivery, frequency and duration of intervention and follow up, instruments used, involvement of caregivers, variability in the members of the team, and training and experience of the nurses. All individual studies may be biased by a lack of an attention control group. Since the meta-analysis focused on the role of nurses, we eliminated studies where nurses had a limited role or no role thus, we did not explore the role of other health care providers in stroke prevention.   5.5 Designing an Optimal Secondary Stroke Prevention Program Based on the findings in this thesis and supported by the literature included in this thesis, an optimal secondary stroke prevention program is designed in this chapter. The key findings from the meta-analysis inform the structure of the proposed stroke prevention program.   5.5.1 Place of initiation Ideally, the stroke prevention program and its intervention should start in the stroke clinic during follow up appointments after discharge. As stroke survivors and family members expressed an interest to learn when they returned home as in chapter 3, the initiation of program after discharge would be essential.      90  5.5.2 Who can deliver the program?  The meta-analysis supports stroke prevention program to utilize nurses with training for behavioural interventions and in collaboration with physicians and other interdisciplinary clinicians for delivering the programs. Nurses or Advanced practice nurses such as Clinical Nurse Specialists or Nurse Practitioners trained in stroke and motivational interviewing could be utilized. Having knowledge of motivational interviewing and stages of behaviour change according to the Transtheoretical Framework of Behaviour Change would help nurses and other health care providers to support stroke patients with behaviour change.   5.5.3 Content of the program Based on the findings noted in the meta-analysis and the needs expressed by the stroke survivors and caregivers in chapter 3 and as supported by another systematic review (Ghisi et al. 2014), the key topics that need to be included in the stroke prevention program include: knowledge of stroke symptoms, risk factors, healthy lifestyle and stroke prevention practices particularly guidelines on diet, physical activity and alcohol use, smoking cessation, and medication adherence.   5.5.4 What interventions can be offered? All chapters provide evidence to support interventions to facilitate lifestyle changes.  Incorporating the principles of chronic disease self-management, interventions could include: education, counseling, care planning, goal setting, action planning, interdisciplinary support, medication review, written and verbal information, arranging GP appointments, and sending discharge summaries to GPs.       91  5.5.5 Mode of delivery Based on the findings in the meta-analysis and qualitative study, face-to-face meetings, telephone follow up, group sessions with other stroke survivors, and web-based programs could be offered, from which stroke survivors may choose to select the most feasible approach to participate in the stroke prevention program. Following the principles of the Transtheoretical Framework of Behaviour Change, conducting individual face-to-face sessions would enable nurses to assess patient's readiness, individual needs and intention to change behaviour. If desired by the clients, they should be given the opportunity to attend group sessions with other stroke survivors and grouping them according to the stage of change they are in. Caregivers should be involved for support.   5.5.6 Duration of the program As eight studies included in the meta-analysis ran for six months or less and as there were less frequent interventions noted in longer duration studies, the recommendation is to offer the program for six months. The program may continue as needed in some cases.   5.5.7 Duration and Dose of the interventions Based on the findings in the meta-analysis, a successful intervention should focus on face-to-face session that run for at least 30 minutes once a month for 6 months. Monitoring patients for a longer period will enable nurses to support patients to transition through the stages of behaviour change according to the Transtheoretical Framework of Behaviour Change.       92   5.5.8 A graphical representation of the optimal secondary stroke prevention program                       93  5.6 Cost Benefit Analysis Given the knowledge that recurrent strokes account for approximately 30% of all strokes, (Sacco et al. 2006), and 62,000 people with stroke and transient ischemic attack present annually to Canadian hospitals (Wein et al. 2018), we estimate that approximately 18,600 recurrent strokes happen each year in Canada. The average 1-year cost of managing a patient with ischemic stroke including all healthcare, social services, and patient and caregiver resource utilisation in Canada is $54,000 (Goeree et al. 2005). The cost of managing 18,600 stroke patients in 1 year would be $54,000 x 18,600 = $1,004,400,000 (over one billion dollars).  The meta-analysis in this thesis demonstrated a 2.84 mm of Hg reduction in SBP as part of the interventions where nurses were involved. A meta-analysis of trials of the effects of BP-lowering drugs on stroke indicate that a 10 mm Hg reduction in SBP is associated with a reduction in risk of stroke of 31% (Lawes et al. 2004). Additionally, SBP has shown a linear relationship to the stroke incidence (Ishikawa et al. 2007; Hornsten et al. 2016) from a SBP of 130 mmHg (Ishikawa et al. 2007) or 140 mmHg (Hornsten et al. 2016). Since the average resting SBP in the trials included in this meta-analysis was 136 mmHg, one could assume a linear relationship between SBP and stroke incidence, and thus it is calculated that a 2.8 mmHg reduction of SBP could result in an 8.8% reduction in stroke.   A nurse in the stroke clinic could spend 30 minutes per patient to undertake secondary stroke prevention and education (providing education, monitoring their blood pressure and reviewing compliance with secondary prevention practices), 6 times over 6 months (total of 3 hours per patient).  Thirty extra minutes is allotted for documentation and other operational requirements of the clinic (total of 3 hours per patient). Thus, a nurse spends a total of 6 hours over 6 months to complete the education per patient. The estimated working time for a nurse is 1950 hours/year. Hence, a total of 325 patients could receive secondary  94  education per year (1950 divided by 6).  The average salary for one full-time registered nurse including benefits is estimated to be $81,412. Employing a nurse for one year with a salary of $81,412, a nurse could see 325 patients. Without secondary prevention, we can assume that 30% (98) of these individuals would go on to have a second stroke. Since a 2.8 mmHg reduction of SBP could result in an 8.8% reduction in stroke as described above, this would reduce the number of recurrent stroke by 9 from 98 to 89 individuals. Using this model, we would be saving approximately $ 468,000 (9 x $52,000) hiring a nurse in full time capacity for a year ($81,412).   5.7 Conclusion Thus, various studies conducted as part of this PhD thesis provide a comprehensive understanding of the knowledge of stroke survivors, their perceptions of challenges and facilitators for pursuing secondary prevention programs and the key nursing skills that can be used to effect risk factor modifications. The thesis have attempted to expose some of the strengths and weaknesses of the current stroke prevention programs to support high-risk individuals, stroke survivors and their families. 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European Journal of Cardiovascular Prevention & Rehabilitation 18: 1: 115-120, 2011.   117  Appendices Appendix A: STROBE Statement—Checklist of items that should be included in reports of cross-sectional studies   Item No Recommendation Page No Title and abstract 1 (a) Indicate the study’s design with a commonly used term in the title or the abstract 16 (b) Provide in the abstract an informative and balanced summary of what was done and what was found iii Introduction Background/rationale 2 Explain the scientific background and rationale for the investigation being reported 16-17 Objectives 3 State specific objectives, including any pre-specified hypotheses 18 Methods Study design 4 Present key elements of study design early in the paper 18-19 Setting 5 Describe the setting, locations, and relevant dates, including periods of recruitment, exposure, follow-up, and data collection 18-19 Participants 6 (a) Give the eligibility criteria, and the sources and methods of selection of participants 19 Variables 7 Clearly define all outcomes, exposures, predictors, potential confounders, and effect modifiers. Give diagnostic criteria, if applicable 19-20 Data sources/ measurement 8*  For each variable of interest, give sources of data and details of methods of assessment (measurement). Describe comparability of assessment methods if there is more than one group 19-20 Bias 9 Describe any efforts to address potential sources of bias 18-19 Study size 10 Explain how the study size was arrived at 21 Quantitative variables 11 Explain how quantitative variables were handled in the analyses. If applicable, describe which groupings were chosen and why 21-22 Statistical methods 12 (a) Describe all statistical methods, including those used to control for confounding 21-22 (b) Describe any methods used to examine subgroups and interactions 21-22 (c) Explain how missing data were addressed 22 (d) If applicable, describe analytical methods taking account of sampling strategy 21-22 (e) Describe any sensitivity analyses N/A  118  Results Participants 13* (a) Report numbers of individuals at each stage of study—eg numbers potentially eligible, examined for eligibility, confirmed eligible, included in the study, completing follow-up, and analysed 22 (b) Give reasons for non-participation at each stage 22 (c) Consider use of a flow diagram N/A Descriptive data 14* (a) Give characteristics of study participants (eg demographic, clinical, social) and information on exposures and potential confounders 25 (b) Indicate number of participants with missing data for each variable of interest 22 Outcome data 15* Report numbers of outcome events or summary measures 19-20 Main results 16 (a) Give unadjusted estimates and, if applicable, confounder-adjusted estimates and their precision (eg, 95% confidence interval). Make clear which confounders were adjusted for and why they were included 27-28 (b) Report category boundaries when continuous variables were categorized N/A (c) If relevant, consider translating estimates of relative risk into absolute risk for a meaningful time period N/A Other analyses 17 Report other analyses done—eg analyses of subgroups and interactions, and sensitivity analyses N/A Discussion Key results 18 Summarise key results with reference to study objectives 21-28 Limitations 19 Discuss limitations of the study, taking into account sources of potential bias or imprecision. Discuss both direction and magnitude of any potential bias 31-32 Interpretation 20 Give a cautious overall interpretation of results considering objectives, limitations, multiplicity of analyses, results from similar studies, and other relevant evidence 29-32 Generalisability 21 Discuss the generalisability (external validity) of the study results 29-32      119  Appendix B: Data Collection Questionnaire   Demographic Information                 Subject ID: _________ Date: ___________________    Age: ________ years 1. Gender:   male     female   2. Marital status:    married             common-law    divorced   widowed                             never married   separated           Single  3. How many years of education do you have?______________________________  Less than high school     What grade level?____________________  High school  What grade level?____________________  Professional degree        Please specify_______________________  Bachelor’s                                           Masters                                                 PhD                                       4. Living:   alone   with some one  5. Ethnicity:  Caucasian   Asian    South Asian    Aboriginal    Other     _________ 6. Can you estimate in which of the following groups your house hold before- tax income falls?  □ no income  □ $60,000 to $70,000 □ below $10,000  □ $70,000 to $80,000 □ $10,000 to $20,000  □ $80,000 to $90,000 □ $20,000 to $30,000  □ $90,000 to $100,000 □ $30,000 to $40,000  □ $100,000 and up □ $40,000 to $50,000  □ Don’t know □ $50,000 to $60,000  □ Refuse to answer 7. Date of Stroke:   1) ____________________________ 2) ____________________________ 3) ____________________________ 8. Stroke type:      Ischemic     Hemorrhagic   Unknown          120  9. Hemisphere affected:    R     L     Bilateral    10.  Treatments received in the hospital:  tPA                                             Thrombectomy                                               Other              Past Medical History from the Chart  Hypertension  Diabetes   Smoker  Cholesterol  Atrial Fibrillation  Previous TIAs/Stroke  Ischaemic heart disease  Peripheral vascular disease     121   FUNCTIONAL COMORBIDITY INDEX                                       Subject ID: _________  Item number Disease Yes No 1 Arthritis (rheumatoid and OA)   2 Osteoporosis   3 Asthma   4 Chronic Obstructive Pulmonary Disease (COPD), acquired respiratory distress syndrome(ARDS), or emphysema   5 Angina   6 Congestive heart failure (or heart disease)   7 Heart attack (myocardial infarct)   8 Neurological disease (such as multiple sclerosis or Parkinson’s)   9 Stroke or TIA   10 Peripheral vascular disease   11 Diabetes type I and II   12 Upper gastrointestinal disease (ulcer, hernia, reflux)   13 Depression and medications antidepressants    14 Anxiety or panic disorders   15 Visual impairment (such as cataracts, glaucoma, macular degeneration)   16 Hearing impairment (very hard of hearing, even with hearing aids)   17 Degenerative disc disease (back disease, spinal stenosis or severe chronic back pain)   18 Obesity and/or body mass index > 30 (weight in kg/height in meters2)   TOTAL    “yes” = 1 “no” = 0   122  Medication Profile  Current Medications  Antihypertensives  Diabetic medications   Cholesterol lowering medications  Cardiac medications  Antidepressants  Antipsychotics  Other___________________  Past Medications   Antihypertensives  Diabetic medications   Cholesterol lowering medications  Cardiac medications  Antidepressants  Antipsychotics  Other___________________   123             BLOOD TEST                                          Subject ID: _________    Lipid Profile  LDL cholesterol  HDL cholesterol  Cholesterol  Triglycerides    Glucose  Fasting glucose  HgbA1C, %    124  Stroke Knowledge Assessment Questionnaire        Subject ID: _________ The purpose of this questionnaire is to assess the knowledge of symptoms and risk factors for stroke in  patients who have had a stroke. There are 7 questions. The subject's answers are compared against the answer sheet (see other sheet). One point is awarded for each correct answer. There are no points for incorrect or uncertain answers. Ask questions in order. The previous answers cannot be changed while answering a subsequent question. If the subjects identify several responses for the same category (e.g. different food items), then prompt them to other areas by asking "you have given me 3 responses that relate to food items, are there other areas you can consider?" If subjects provide correct and in correct answers for a single point, they would score 0 on that point, e.g. for question 6 if the response is, "reduce soda and increase fiber", the score would be 0. Note that questions 4 and 5 are not short answer questions, instead those questions require the subject to provide the ONE correct answer.  Note: for the questions on Stroke Prevention Strategies, the greatest weight (and therefore points) has been provided to questions involving strategies/risks that have demonstrated the strongest relationship to recurrent stroke or cardiovascular events.   Thus, question 3 on blood pressure control is weighted higher than question 7 on stress management (2 points). It is possible that sometimes answering questions related to stroke and healthy lifestyle make people uncomfortable and blame themselves, and feeling responsible for having their stroke. The subjects may also feel bad for not being able to answer the questions or answer them correctly. You are required to reassure them that they would not be judged based on their responses to the questions and not answering or answering inappropriately would not compromise the medical care they receive in the hospital. They do not have to answer all of the questions, and any that make them feel uncomfortable they may skip. The information we gather from them will benefit others who work on organizing various programs to prevent patients from having strokes.  125   Questions on symptoms of stroke 1. List 5 warning signs or symptoms that a person might first have if they are having a stroke .            ________________________ ________________________ ________________________  ________________________  ________________________   Questions on risk factors 2. List 5 reasons that may cause or contribute to having a stroke. Please try to focus on the factors that people might be able to change.     ________________________ ________________________ ________________________  ________________________  ________________________  Questions to assess knowledge on Stroke Prevention Strategies  3. List 3 ways to reduce blood pressure or maintain a healthy blood pressure level    4. Moderate physical activity is defined as activity that causes the heart to beat faster and also cause some shortness of breath but still allows you to talk comfortably (eg. brisk walking, lawn mowing, bicycling).        ______________________     ______________________      ______________________         126  What is the recommended minimum number of minutes per week of moderate physical activity that adults should do to minimize the risk of stroke?    5. What is the recommended minimum (least) number of time per week should you participate in moderate physical activity?      6. List 3 different types of changes in diet that may help decrease the risk of stroke.         7. List 2 different ways people can      manage the stress in their life.   120-160 mins  160-315mins (45 min/day)  <120 or > 315     3-7 times per week   1 or 2 times per week       _____________________      _____________________      _____________________      _______________________     _______________________     _______________________          127                                                                  Subject ID: _________ BODY COMPOSITION  Weight:  1) Use a digital scale to record the person’s weight Height: 1) Take the height measurement on flooring that is not carpeted and against a flat surface such as a wall with no molding. 2) Have the participant stand with feet flat, together, and against the wall. Make sure legs are straight, arms are at sides, and shoulders are level. 3) Instruct the participant to look straight ahead. 4) Take the measurement while the participant stands with head, shoulders, buttocks, and heels touching the flat surface (wall).  5) Use a flat object (eg. a book) to form a right angle with the wall and lower the object until it firmly touches the crown of the head. 6) Lightly mark where the bottom of the object meets the head. 7) Use a tape measure to measure from the base on the floor to the marked measurement on the wall to get the height measurement.  Weight (kg): _____________   (check weight in bed if stays in bed) Height (m): ______________ Body Mass Index (kg/m2): ______________           128  RESTING BLOOD PRESSURE                                                 Subject ID: _________  Procedure:  The patient will be instructed to relax as much as possible and to not talk during the measurement procedure. After 5 minutes of resting, BP will be taken at the brachial artery of the non-paretic side using Dinamap device. A minimum of 2 readings will be taken at intervals of at least 1 minute, and the average of those readings will be used to represent the patient’s blood pressure. If there is 5 mm Hg difference between the first and second readings, additional (1 or 2) readings will be obtained, and then the average of these multiple reading will be used  BP1 Systolic________Diastolic___________ BP2 Systolic________Diastolic___________  Additional readings: BP4 Systolic_______ Diastolic___________ BP5 Systolic_______Diastolic____________         129   Smoking status (Tobacco and other inhaled substances) Ask if the participants had smoked any cigarettes over the last 7 days.   No         Yes   This item is scored in binary format (where 0 = No and 1 = Yes).  If yes, number of cigarettes per day ____________________   Alcohol consumption        Ask if the participants had consumed any alcoholic beverages over the last 7 days  No         Yes   This item is scored in binary format (where 0 = No and 1 = Yes).  If yes, number of drinks per day________________________  Following Canada’s Low-Risk Alcohol Drinking Guidelines is recommended: for women, no more than 10 drinks per week, with no more than 2 drinks per day most days and no more than 3 drinks on any single occasion; for men, no more than 15 drinks per week, with no more than 3 drinks per day most days and no more than 4 drinks on any single occasion.     130  National Institutes of Health Stroke Scale (NIHSS)  Subject ID: _________ Item Instructions Scale  (Circle the correct answer) Level of Consciousness  0:  Alert, keenly responsive 1:  Not alert; but arousable by minor stimulation to obey, answer, or respond. 2:  Not alert; requires repeated stimulation to attend, or is obtunded and requires strong or painful stimulation to make movements. 3:  Responds only with reflex motor or autonomic effects or totally unresponsive, flaccid and are flexic.  Level of Consciousness Questions Ask the patient the month and his/her age. The answer must be correct – there is not partial credit for being close.   Aphasic patients will score 2  0:  Answers both questions correctly 1:  Answers one question correctly 2:  Answers neither question correctly  Ask the patient to: 0:  Performs both tasks correctly  131  Item Instructions Scale  (Circle the correct answer) Level of Consciousness Commands 1. Open and close the eyes, then 2. Grip and release the non-paretic hand Credit is given if an unequivocal attempt is made but not completed due to weakness 1:  Performs one task correctly 2:  Performs neither task correctly Best Gaze Test horizontal eye movements 0:  Normal 1:  Partial gaze palsy; gaze is abnormal in one or both eyes, but forced deviation or total gaze paresis is not present. 2:  Forced deviation; or total gaze paresis is not overcome by the oculocephalic maneuver. Visual Visual fields (upper and lower quadrants) are tested by confrontation, using finger counting or visual threat. Score 1 only if a clear cut asymmetry if found. 0:  No visual loss 1:  Partial hemianopia 2:  Complete hemianopia 3:  Bilateral hemianopia (blind including cortical blindness) Facial Palsy Ask the patient to: 1.  Show teeth, then 0:  Normal symmetrical movements  132  Item Instructions Scale  (Circle the correct answer) 2. Close eyes Score symmetry of movement 1:  Minor paralysis (flattened nasolabial fold, asymmetry on smiling) 2:  Partial paralysis (total or near-total paralysis of lower face) 3:  Complete paralysis of one or both sides (absence of facial movement in the upper and lower face). Motor Arm Test both UEs, starting with the non-paretic UE. Choose a position:   1.Sitting with 90 degrees shoulder flexion, palm down  OR  2. Supine, 45 degrees shoulder flexion, palm down.  Have the patient hold the arm in the position for 10 seconds. Drift is scored if the arm falls before 10 seconds 0:  No drift; limb holds 45 degrees (or 90) for full 10 seconds 1:  Drift; limb holds 45 degrees (or 90), but drifts down before full 10 seconds; does not hit bed or other support 2:  Some effort against gravity; limb cannot get to or maintain (if cued) 45 degrees (or 90), drifts down to bed, but has some effort against gravity. 3:  No effort against gravity; limb falls 4:  No movement. 5:  Amputation or joint fusion; explain. Right UE Score: Left UE Score:  133  Item Instructions Scale  (Circle the correct answer) Motor Leg Test both LEs, starting with the non-paretic LE, in SUPINE. Place the participant’s extended leg in 30 degrees hip flexion. Have the patient hold the leg in this position for 5 seconds. Drift is scored if the leg falls before 5 seconds. 0:  No drift; leg holds 30 degree position for full 5 seconds 1:  Drift; leg falls by the end of the 5 second period, but does not hit the bed. 2:  Some effort against gravity; leg falls to bed by 5 seconds but has some effort against gravity 3:  No effort against gravity; leg falls to bed immediately. 4:  No movement. 5:  Amputation or joint fusion; explain. Right LE Score: Left LE Score: Limb Ataxia This item is aimed at finding evidence of a unilateral cerebellar lesion Do a finger-nose-finger test with both UEs Ataxia is scored only in proportion to weakness and is absent in the patient who is paralyzed. 0:  Absent 1:  Present in one limb 2:  Present in two limbs UN:  Amputation or joint fusion:  explain. Sensory Only sensory loss attributed to stroke is scored as 0:  Normal; no sensory loss  134  Item Instructions Scale  (Circle the correct answer) abnormal. Examiner should test as many body areas (arms-not hands, legs, trunk,face) as needed to accurately check for hemi-sensory loss. 1:  Mild-to-moderate sensory loss; patient feels pinprick is less sharp or is dull on the affected side; or there is a loss of superficial pain with pinprick, but patient is aware of being touched. 2:  Severe or total sensory loss; patient is not aware of being touched in the face, arm, and leg. Best Language Have the patient: 1. Describe what is happening in the attached picture. 2. Name the items on the attached naming sheet. 3. Read from the attached list of sentences Comprehension is judged from responses here, as well as to the other commands in the examination.    0:  No aphasia; normal. 1:  Mild-to-moderate aphasia; some obvious loss of fluency or facility of comprehension without significant limitation on ideas expressed or form of expression.  Reduction of speech and/or comprehension, however, makes conversation about provided materials difficult or impossible.  For example, in conversation about provided materials, examiner can identify picture or naming card content from patient’s response. 2:  Severe aphasia; all communication is through fragmentary expression; great need for inference, questioning, and guessing by the listener.  Range of  135  Item Instructions Scale  (Circle the correct answer) information that can be exchanged is limited; listener carries burden of communication.  Examiner cannot identify materials provided from patient response. Dysarthria If the patient’s speech is thought to be normal, have the patient read or repeat words from the attached list. If the patient has severe aphasia, the clarity of articulation of spontaneous speech can be rated. 0:  Normal 1:  Mild to Moderate Dysarthria; patient slurs at least some words and at worst, can be understood with some difficulty. 2:  Severe dysarthria; patient’s speech is so slurred as to be unintelligible in the absence of or out of proportion to any dysphasia, or is mute/anarthric. Extinction and Inattention (formerly Neglect) Neglect can be identified during the prior testing. 0:  No abnormality 1:  Visual, tactile, auditory, spatial or personal inattention, or extinction to bilateral simultaneous stimulation in one of the sensory modalities. 2:  Profound hemi-inattention or extinction to more than on modality; does not recognize own hand or orients to only one side of space. TOTAL SCORE:   136   Montreal Cognitive Assessment (MoCA)   Subject ID: _________ The MoCA was designed as a rapid screening measure for mild cognitive dysfunction.  It will be used in this study to describe participants’ cognitive status.  It assesses different cognitive domains such as attention and concentration, executive functions, memory, language, visuoconstructional skills, calculations and memory.   Instructions: Dialogue: The next questionnaire involves looking at your thinking and memory.   Questions: VISUOSPATIAL Alternative Trail Making Please draw a line, going from a number to a letter in ascending order.  Begin here [point to 1] and draw a line from 1 to A then to 2 and so on. End here [point to E]. Scoring: 1 point for the pattern: 1-A-2-B-3-C-4-D-5-E without drawing any lines that cross.  Any error that is not immediately self-corrected scores 0.  Cube Copy this drawing as accurately as you can, in the space below. Scoring: 1 point if all these criteria are met: drawing is 3 dimensional, all lines are drawn, no line is added, lines are relatively parallel and their length is similar.      137  Clock Please draw a clock. Put in all the numbers and set the time to 10 past 11. Scoring: 3 points total.  One point for each:  Contour (1 point): clock face must be a circle (minor distortion is acceptable)  Numbers (1 point): all numbers must be present with no additional numbers; numbers must be in correct order and placed in approximate quadrants on the clock face; roman numerals are ok and numbers can be placed outside the circle.    Hands (1 point): must be 2 hands indicating the correct time; the hour hand must be slightly shorter than the minute hand; hands must be centred within the clock face. NAMING Naming Animals Beginning on the left, point to each figure and say: Please tell me the name of this animal Scoring: 1 point each is given for the following responses: (1) lion (2) rhinoceros or rhino (3) camel or dromedary.  MEMORY Repeating words This is a memory test.  I am going to read a list of words that you will have to remember now and later on. Listen carefully. When I am through, tell me as many words as you can remember. It doesn’t matter in what order you say them. Read the list of 5 words at a rate of one per second. When the subject indicates that (s)he has finished or cannot recall anymore words, read the list a second time with the following instructions: I am going to read the same list for a second time. Try to remember and tell me as many words as you can, including words you said the first time.   138  After the participants is finished, tell them: I will ask you to recall those words again at the end of the test Scoring: No points are given for Trial One and Two.  ATTENTION Forward digit span I am going to say some numbers and when I am through, repeat them to me exactly as I said them. Read the five numbers at a rate of one digit per second. 2 1 8 5 4  Backward Digit span Now I am going to say some more numbers, but when I am through you must repeat them to me in the backwards order. Read the three number sequence at a rate of one digit per second.  7 4 2  Scoring: 1 point for each sequence correctly repeated.  Note: the correct response for the backwards trial is 2-4-7 Letter Recognition/Tapping test I am going to read a sequence of letters. Every time I say the letter A, tap your hand once. If I say a different letter, do not tap your hand. Read the letters at a rate of one per second.  Letters: F B A C M N A A J K L B A F A K D E A A A J A M O F A A B    139  Scoring: 1 point if there is zero or one error (an error is a tap on a wrong letter or a failure to tap on letter A) Serial 7 subtraction Now I will ask you to count, by subtracting seven from 100, and then, keep subtracting seven from you answer until I tell you to stop. Give instructions twice if necessary.   Scoring: total points is 3. Give 0 points for no correct subtractions. 1 point for one correct subtraction, 2 points for two-three correct subtractions, and 3 points for four to five correct subtractions.  Count each correct subtraction starting with 100.  Each subtraction is marked independently so a participant could get an incorrect number but then continue to subtract 7 correctly.  For example, participant may respond 92-85-78-71-64.  This example would score 3 as 92 was incorrect but all other subtractions were correct.  Five correct subtractions would be: 93-86-79-72-65 LANGUAGE Sentence repetition I am going to read you a sentence. Repeat it after me, exactly as I say it [pause]: I only know that John is the one to help today.  Following the response say: Now I am going to read you another sentence. Repeat it after me, exactly as I say it [pause]: The cat always hid under the couch when dogs were in the room. Scoring: 1 point for each sentence correctly repeated. Repetition must be exact.  Be alert for errors that are omissions. (eg omitting “only”, always) and substitutions/additions.     140  Verbal fluency Tell me as many words as you can think of that begin with a certain letter of the alphabet that I will tell you in a moment. You can say any kind of word you want, except for proper nouns (like Bob or Boston), numbers or words that begin with the same sound but have a different suffix, for example, love, lover, loving. I will tell you to stop after one minute. Are you ready? [pause] Now, tell me as many words as you can think of that begin with the letter F. [time for 60 secs]. Stop. Scoring: 1 point if participant lists 11 words or more in 60 seconds.  ABSTRACTION Practice trial: Tell me how an orange and a banana are alike. If the subject answers in a concrete manner, then say one additional time, Tell me another way in which those items are alike. If the subject does not give the correct response again, you can say, yes and they are also both fruit. Do not give any additional instructions or clarification. After the practice trial, say: Now, tell me how a train and a bicycle are alike. Following the response, administer the second trial, saying: Now tell me how a ruler and a watch are alike Scoring: The practice trial is not scored. Score 1 point to each item pair correctly answered. The following responses are acceptable: Train-bicycle=means of transportation, means of travelling, you take trips in both Ruler-watch= measuring instruments, used to measure The following responses are not acceptable: train-bicycle=they have wheels; Ruler-watch=they have numbers   141  DELAYED RECALL I read some words to you earlier, which I asked you to remember. Tell me as many of those words as you can remember.  Scoring: 1 point for each word recalled freely without any cues.  ORIENTATION Please tell me the date today. If the subject does not give a complete answer, then prompt accordingly by saying: Tell me the [year, month, exact date, and day of the week] (ie. whatever they didn’t say). Then say, Now, tell me the name of this place, and which city it is in.  Scoring: 1 point for each item correctly answered.    142  MoCA Assessment sheet: 143  Subject ID: _________ Modified Rankin Scale  1. Pre-Stroke Disability (Modified Rankin Scale):  □ 0        □ 1         □ 2       □ 3        □ 4       □ 5  2. Current Disability (Modified Rankin Scale):        □ 0        □ 1         □ 2       □ 3        □ 4      □ 5    Score Description 0 No symptoms at all  1 No significant disability despite symptoms; able to carry out all usual duties and activities  2 Slight disability; unable to carry out all previous activities, but able to look after own affairs without assistance  3 Moderate disability; requiring some help, but able to walk without assistance  4 Moderately severe disability; unable to walk without assistance and unable to attend to own bodily needs without assistance  5 Severe disability; bedridden, incontinent and requiring constant nursing care and attention  6 Death  Total (0–6): ____   144  N EVER SO M ETIM ES O FTEN R O U TIN ELY HEALTH PROMOTING LIFESTYLE PROFILE II        Subject ID: _________ This questionnaire contains statements about your way of life or personal habits in the week prior to your stroke.  Please respond to each item as accurately as possible, and try not to skip any item.  Indicate the frequency with which you engage in each behavior  Health Responsibility: For this first set of questions, I’d like you to think about things  that you do to ensure you are in good health.    Do you… 3 Report any unusual signs or symptoms to a physician or other health professional? N S O R 9 Read about or watch TV programs about improving health?   N S O R 15 Question health professionals in order to understand their instructions? N S O R 21 Get a second opinion when you question your health care provider's advice? N S O R 27 Discuss your health concerns with health professionals? N S O R 33 Inspect your body at least monthly for physical changes/danger signs? N S O R 39  Ask for information from health professionals about how to take good care of yourself? N S O R 45 Attend educational programs on personal health care? N S O R 51 Seek guidance or counseling when necessary? N S O R  Health Responsibility (Q 3, 9, 15, 21, 27, 33, 39, 45, 51) Total score (Sum):___________  Average score: (Total score / 9):_________ Never (N)  = 1 Sometimes (S)  =  2 Often (O)   = 3 Routinely (R)  = 4   145  N EVER SO M ETIM ES O FTEN R O U TIN ELY Physical Activity: For this set of questions, I’d like you to think about your physical  activities and how often you do them.  Do you… 4 Follow a planned exercise program? N S O R 10 Exercise vigorously for 20 or more minutes at least three times a week (such as brisk walking, bicycling, aerobic dancing, using a stair climber)? N S O R 16 Take part in light to moderate physical activity (such as sustained walking 30-40 minutes 5 or more times a week)? N S O R 22  Take part in leisure-time (recreational) physical activities (such as swimming, dancing, bicycling)? N S O R 28 Do stretching exercises at least 3 times per week? N S O R 34  Get exercise during usual daily activities (such as walking during lunch, using stairs instead of elevators, parking car away from destination and walking)? N S O R 40 Check your pulse rate when exercising? N S O R 46 Reach your target heart rate when exercising? N S O R            146   Troubleshooting:  Item 10:  ‘Vigorous’ exercise refers to be “out of breath” and sweat.  Item 16:  ‘Moderate’ physical activity refers to breathing a little harder and sweating a bit.  Item 46:  Target heart rate depends on age. See below guidelines from the American Heart  Association. Age Target Heart Rate 50-85% of maximal 50 years 85-145 beats per minute 55 years 83-140 beats per minute 60 years 80-136 beats per minute 65 years 78-132 beats per minute 70 years 75-128 beats per minute   Physical Activity (Q 4, 10, 16, 22, 28, 34, 40, 46)  Total score (Sum):___________  Average score: (Total score / 8):_________  Never (N)  = 1 Sometimes (S)  =  2 Often (O)   =  3 Routinely (R)  =  4   147  N EVER SO M ETIM ES O FTEN R O U TIN ELY Nutrition: For this set of questions, I’d like you to think about the different types of  foods you eat, and how often you eat them.   Do you…  2 Choose a diet low in fat, saturated fat, and cholesterol? N S O R 8 Limit your use of sweets or food containing sugar? N S O R 14 Eat 6-11 servings of bread, cereal, rice and pasta each day? N S O R 20 Eat 2-4 servings of fruit each day? N S O R 26 Eat 3-5 servings of vegetables each day? N S O R 32 Eat 2-3 servings of milk, yogurt or cheese each day? N S O R 38 Eat only 2-3 servings from the meat, poultry, fish, dried beans, eggs, and nuts group each day? N S O R 44 Read labels to identify nutrients, fats, and sodium content in packaged food? N S O R 50 Eat breakfast? N S O R   Troubleshooting  Item 14:  1 serving = 1 slice of bread; ¾ cup of cereal; ½ cup cooked rice or pasta.  Item 20:  1 serving = ½ cup or one medium sized piece (e.g. size of a baseball).  Item 26:  1 serving = 1 cup of salad; ½ cup of other vegetables (e.g. 4 stalks of broccoli); or 1 piece  (e.g. 1 medium carrot.  Item 32:  1 serving = 1 cup of milk; ¾ cup of yogurt; 2 slices of cheese or 2-1 inches square blocks  Item 38:  1 serving = 100 grams of meat, fish or poultry (e.g. size of a deck of cards); ¾ cup of  beans. Nutrition (Q 2, 8, 14, 20, 26, 32, 38, 44, 50)  Total score (Sum):_________  Average score: (Total score / 9):_________  Never (N)  = 1 Sometimes (S)  =  2 Often (O)   =  3 Routinely (R)  =  4   148  N EVER SO M ETIM ES O FTEN R O U TIN ELY  Spiritual Growth: For this set of questions, I’d like you to think about your  outlook on life and spirituality.    Do you… 6 Feel you are growing and changing in positive ways?  (Personal growth) N S O R 12 Believe that your life has purpose? N S O R 18 Look forward to the future? N S O R 24 Feel content and at peace with yourself? N S O R 30 Work toward long-term goals in your life? N S O R 36 Find each day interesting and challenging? N S O R 42 Are you aware of what is important to you in life?  N S O R 48 Feel connected with some force greater than yourself? (About Spirituality)  N S O R 52 Expose yourself to new experiences and challenges? N S O R  Spiritual Growth (Q 6, 12, 18, 24, 30, 36, 42, 48, 52)  Total score (Sum):_________  Average score: (Total score / 9):_________  Never (N)  = 1 Sometimes (S)  =  2 Often (O)   =  3 Routinely (R)  =  4      149  N EVER SO M ETIM ES O FTEN R O U TIN ELY Interpersonal Relations: For this set of questions, I’d like you to think about the  relationships you have with others, and how often you receive and provide support.   Do you… 1 Discuss your problems and concerns with people close to you? N S O R 7 Praise other people easily for their achievements? N S O R 13 Maintain meaningful and fulfilling relationships with others? N S O R 19 Spend time with close friends? N S O R 25 Find it easy to show concern, love and warmth to others? N S O R 31 Emotionally affected by people you care about?   N S O R 37 Find ways to meet your intimacy needs? N S O R 43 Get support from a network of caring people? N S O R 49 Settle conflicts with others through discussion and compromise? N S O R   Interpersonal Relations (Q 1, 7, 13, 19, 25, 31, 27, 43, 49)   Total score (Sum):___________  Average score: (Total score / 9):_________   Never (N)  = 1 Sometimes (S)  =  2 Often (O)   =  3 Routinely (R)  =  4    150  N EVER SO M ETIM ES O FTEN R O U TIN ELY Stress Management: For this set of questions, I’d like you to think about the  things that you do to help with your stress. I’d also like you to think about how often  you do those things.    Do you… 5 Get enough sleep? N S O R 11 Take some time for relaxation each day? N S O R 17 Accept those things in your life which you cannot change? N S O R 23 Concentrate on pleasant thoughts at bedtime? N S O R 29 Use specific methods to control your stress? N S O R 35 Balance your time between work and play? N S O R 41 Practice relaxation or meditation for 15-20 minutes daily? N S O R 47 Pace yourself to prevent tiredness? N S O R   Stress Management (Q 5, 11, 17, 23, 29, 35, 41, 47)  Total score (Sum):___________  Average score: (Total score / 8):_________  Never (N)  = 1 Sometimes (S)  =  2 Often (O)   =  3 Routinely (R)  =  4     Health-Promoting Lifestyle (Q 1-52)  Global total score (Sum of total scores):__________    Average score (Sum of total scores / 52): __________         151  Appendix C:  Framingham Risk Score Tool                                            152  Appendix D: Consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist   No.  Item   Guide questions/description Reported on Page # Domain 1: Research team and reflexivity    Personal Characteristics    1. Inter viewer/facilitator Which author/s conducted the interview or focus group?  35 2. Credentials What were the researcher’s credentials? E.g. PhD, MD  35 3. Occupation What was their occupation at the time of the study?  35 4. Gender Was the researcher male or female?  35 5. Experience and training What experience or training did the researcher have?  35 Relationship with participants    6. Relationship established Was a relationship established prior to study commencement?  36 7. Participant knowledge of the interviewer  What did the participants know about the researcher? e.g. personal goals, reasons for doing the research  N/A 8. Interviewer characteristics What characteristics were reported about the inter viewer/facilitator? e.g. Bias, assumptions, reasons and interests in the research topic  35 Domain 2: study design    Theoretical framework    9. Methodological orientation and Theory  What methodological orientation was stated to underpin the study? e.g. grounded theory, discourse analysis, ethnography, phenomenology, content analysis  38 Participant selection    10. Sampling How were participants selected? e.g. purposive, convenience, consecutive, snowball  36 11. Method of approach How were participants approached? e.g. face-to-face, telephone, mail, email  36 12. Sample size How many participants were in the study?  39 13. Non-participation How many people refused to participate or dropped out? Reasons?  39 Setting   14. Setting of data collection Where was the data collected? e.g. home, clinic, workplace  37 15. Presence of non-participants Was anyone else present besides the participants and researchers?  36 16. Description of sample What are the important characteristics of the sample? e.g. demographic data, date  39  153  Data collection    17. Interview guide Were questions, prompts, guides provided by the authors? Was it pilot tested?  37 18. Repeat interviews Were repeat inter views carried out? If yes, how many?  36-37 19. Audio/visual recording Did the research use audio or visual recording to collect the data?  38 20. Field notes Were field notes made during and/or after the interview or focus group? 38 21. Duration What was the duration of the inter views or focus group?  38 22. Data saturation Was data saturation discussed?  38 23. Transcripts returned Were transcripts returned to participants for comment and/or correction?  N/A Domain 3: analysis and findings    Data analysis    24. Number of data coders How many data coders coded the data?  38 25. Description of the coding tree Did authors provide a description of the coding tree?  38 26. Derivation of themes Were themes identified in advance or derived from the data?  38 27. Software What software, if applicable, was used to manage the data?  38 28. Participant checking Did participants provide feedback on the findings?  38 Reporting    29. Quotations presented Were participant quotations presented to illustrate the themes/findings? Was each quotation identified? e.g. participant number  39-45 30. Data and findings consistent Was there consistency between the data presented and the findings?  39-45 31. Clarity of major themes Were major themes clearly presented in the findings?  39-45, 48-49 32. Clarity of minor themes Is there a description of diverse cases or discussion of minor themes?       39-45               154  Appendix E:  Qualitative Interview Guide    SURVIVORS  Subject ID: _________     Date: _____________  Data Collection & Interview Booklet 2 weeks   RA is to explain this part to the participant before commencing the interview.  The purpose of this interview is to explore the facilitators and barriers you perceive for participating in activities to prevent future strokes. The interview will be audiotaped and  be assured that the audiotaping can be stopped at any time during the interview and that the interview can also be terminated at any time. The interview will be held twice- once now and again 6 months later.   Information for the RA There are 6 main questions. Depending on the direction of the interview, the interviewer may ask additional questions as prompts to encourage the participants to discuss pertinent issues.  It is important to reassure participants that there are no right or wrong answer. It is possible that sometimes answering questions related to stroke and healthy lifestyle make people uncomfortable and blame themselves, and feeling responsible for having their stroke. The participants may also feel bad for not being able to answer the questions or answer them correctly. You are required to reassure them that they would not be judged based on their responses to the questions and not answering or answering inappropriately would not compromise the services they receive, if any. The entire interview may take an hour long. They do not have to answer all of the questions, and any that make them feel uncomfortable they may skip. The information we gather from them will benefit others who work on organizing various programs to prevent patients from having strokes and to support those who already have a stroke.  155  Questions and prompts 2 weeks after discharge 1. Get participants to reflect on their current lifestyle.  What do you think is the cause of the stroke in your case? What if any, lifestyle factors do you think could be contributed to having stroke? 2. Gets participants to identify both facilitators and personal barriers to healthy-lifestyle participation.                  At this point in time, what changes would you make to your way of living now that you've had a stroke?  Prompt as needed as below  Diet  What, if any changes have you considered making in your diet? What effect do you think these changes would have on your health?  What are some of the struggles you experience for eating a healthy diet? What would motivate you to make those changes? Exercise How do you think exercise affects your health?  What has been your experience with exercise in the past?  What would help you to become more active ?  Medications  What, if any, medications have you been prescribed that you need to take on a regular basis?  What are some of the struggles you experience for taking your medications regularly?  What would help you to take medications each day without missing the doses? Smoking (Ask about smoking only if the participant is identified as a smoker from the quantitative interview) What effect do you think smoking has on your health?  156  Questions and prompts 2 weeks after discharge Have you tried to quit before? If so, What were some of the struggles you experienced in your attempt to quit smoking?  What are some steps you think you could take to quit smoking? 3. Resources to support the lifestyle changes What resources would help you to make the changes you have mentioned? (e.g., family members, friends, media, community groups, doctor).  4. To explore missed areas, if any.   Have we missed anything? Probe about what has been missed in the interview. Have you got any further information for us in the area of exercise, diet etc? 5. Establishes preferred methods of information dissemination You mentioned x, y and z… how would you like to learn about these things? (e.g., brochures, class).   (Mention only about the areas the participant wanted to improve on) What, if any, information/education have you received about X, Y & Z? (e.g., leaflets, a class, a demonstration, a talk). How did you find it useful? 6. Establishes motivating factors for participation in a lifestyle intervention program We want to develop a program for people like you with stroke for stroke prevention. What kind of services you would like to see for patients with stroke? A lot of people struggle to makes changes to their lifestyle in order to prevent another stroke. What do you think is needed to help those people to prevent another stroke?   We are thinking of developing a stroke prevention program and it would include discussion on healthy lifestyle and exercise classes. What would motivate you to sign up and continue to attend?   Summarize the discussion  Allows clarification and participant consensus on the themes discussed  Set up an approximate date and time and venue for the next interview: _______________   157  Subject ID: _________      Date: _____________  Data Collection & Interview Booklet 6 months  RA is to explain this part to the participant before commencing the interview. Thank you for agreeing to participate in the interview again. In the first interview which was held soon after your discharge from the hospital we discussed about your attitudes, perceptions, and anticipated challenges and barriers for participating in activities to prevent future strokes.  The purpose of this interview is to explore, if any, changes in your attitudes and perceptions towards lifestyle modifications in the last six months as you were recovering from stroke. The  interview will be audiotaped and  be assured that the audiotaping can be stopped at any time during the interview and that the interview can also be terminated at any time.   Information for the RA There are 6 main questions. Depending on the direction of the interview, the interviewer may ask additional questions as prompts to encourage the participants to discuss pertinent issues.  It is important to reassure participants that there are no right or wrong answer. It is possible that sometimes answering questions related to stroke and healthy lifestyle make people uncomfortable and blame themselves, and feeling responsible for having their stroke. The participants may also feel bad for not being able to answer the questions or answer them correctly. You are required to reassure them that they would not be judged based on their responses to the questions and not answering or answering inappropriately would not compromise the services they receive, if any. The entire interview may take an hour long. They do not have to answer all of the questions, and any that make them feel uncomfortable they may skip. The information we gather from them will benefit others who work on organizing various programs to prevent patients from having strokes and to support those who already have a stroke.  158   Questions and prompts 6 months after discharge 1. Get participants to reflect on their current lifestyle What if any, lifestyle factors do you think could be contributed to having stroke?  2. Gets participants to identify both facilitators and personal barriers to healthy-lifestyle participation.  (Summarize the discussion from the first interview on intended lifestyle changes)  Looking back, can you describe any new changes in your lifestyle you wanted to make and have made since you had a stroke? Where do you think you are today?  Prompt as needed as below  Diet What has been your experience to follow a healthy diet since you had the stroke?  What, if any changes have you made in your diet?   What has helped you to follow a healthy diet since you had a stroke?  What kind of barriers or stumbling blocks did you face since you had a stroke to follow a healthy diet? How did you overcome those barriers? Exercise  What has been your experience to follow an exercise routine since you had the stroke?  What, if any changes have you made in your exercise routine?   What has helped you to follow regular exercise since you had a stroke?  What kind of barriers or stumbling blocks did you face since you had a stroke to follow a healthy diet? How did you overcome those barriers   159  Questions and prompts 6 months after discharge Medications What, if any, medications have you been prescribed that you need to take on a regular basis?  What has been your experience to take your medications regularly  since you had the stroke?  What has helped you to take your medications each day without missing the doses?  What kind of barriers or stumbling blocks have you faced since you had a stroke to take your medications regularly? How did you overcome those barriers Smoking (Ask about smoking only if it was addressed in the initial interview)  What has been your experience to quit smoking since you had the stroke?  What, if any changes have you made in your smoking habits?  What has helped you to quit or cut down on smoking since you had a stroke?  What kind of barriers or stumbling blocks did you face since you had a stroke to quit smoking? How did you overcome those barriers?   3. Gets participants to identify resources or strategies to support the lifestyle changes  If they were unable to make and sustain any of the above mentioned life style changes, ask What are some of your motivations for wanting to make changes to your lifestyle?  What resources would help you to make the changes you have mentioned? (e.g., family members, friends, media, community groups, doctor) How can the support or pressure from that person/group help you to make change this time?   160  Questions and prompts 6 months after discharge What are some steps you think you could take to start making changes in your lifestyle? 4. To explore missed areas, if any.   Have we missed anything? Probe about what has been missed in the interview. Have you got any further information for us in the area of exercise, diet etc? 5. Establishes preferred methods of information dissemination.   You mentioned about x, y and z (Mention only about the areas the participant wanted to improve on).    What, if any, information/education have you received about X, Y & Z since you had the stroke to help you to change your lifestyle?  (e.g., leaflets, a class, a demonstration, a talk). How did you find it useful? 6. Establishes motivating factors for participation in a lifestyle intervention program.  Have you participated in any group or individual stroke prevention programs since you were discharged from the hospital?  Could you describe about the program?  What has been your experience? What has helped you to keep on attending the program?  7. Summary of deviant cases and ask for their thoughts and perspectives  Provide a summary of the cases such as someone not wanting to make changes to their lifestyle or someone who had to take on a new role or change their role due to stroke. Explain these different situations from other interviews and invite their thoughts/perspectives on these cases.     Summary   Allows clarification and participant consensus on the themes discussed  Have we missed anything? Have you got any further information for us?     161   CAREGIVERS    Subject ID: _________     Date: _____________  Data Collection & Interview Booklet 2 weeks  RA is to explain this part to the participant before commencing the interview. The purpose of this interview is to explore the attitudes, perceptions, challenges and barriers held by the spouses/caregivers of stroke survivors for supporting them to participate in activities to maintain a healthy lifestyle. The interview will be audiotaped and  be assured that the audiotaping can be stopped at any time during the interview and that the interview can also be terminated at any time. The interview will be held twice- once now and again 6 months later.  Information for the RA There are 6 main questions. Depending on the direction of the interview, the interviewer may ask additional questions as prompts to encourage the participants to discuss pertinent issues.  It is important to reassure participants that there are no right or wrong answer. It is possible that sometimes answering questions related to stroke and healthy lifestyle make people uncomfortable and blame themselves, and feeling responsible for having stroke. The participants may also feel bad for not being able to answer the questions or answer them correctly. You are required to reassure them that they would not be judged based on their responses to the questions and not answering or answering inappropriately would not compromise the services their loved one receive, if any. The entire interview may take an hour long. They do not have to answer all of the questions, and any that make them feel uncomfortable they may skip. The information we gather from them will benefit others who work on organizing various programs to prevent patients from having strokes and to support those who already have a stroke.  162   Questions and prompts 2 weeks after discharge Get participants to reflect on healthy lifestyle What does a healthy lifestyle mean to you? (Probe about diet, exercise etc if needed to steer the conversation) What do you think is the cause of the stroke in your partner's case? What if any, your lifestyle factors do you think has had an impact on him/her health? Gets participants to identify both facilitators and personal barriers to healthy-lifestyle participation.  What changes in Mr./Mrs. -----lifestyle have you thought of helping to make now that he/she has had a stroke?  Prompt as needed as below  Diet What, if any changes have you considered in supporting him/her to make in his/her diet?  What effect do you think that would have on his/her health?  What kind of barriers or stumbling blocks do you anticipate  Mr./Mrs.----will face in order to follow a healthy diet? Have you tried to help him/her to make any diet changes in the past? How was that experience?  What would motivate you to help him/her to make changes to his/her diet?  Exercise What, if any changes have you considered in supporting him/her to be more active?  What effect do you think that would have on his/her health?  What do you think has been his/her experience to follow an exercise routine in the past?  What kind of barriers or stumbling blocks do you anticipate for Mr./Mrs.----to face in order to stay active? What would help him/her to become more active?   163   Questions and prompts 2 weeks after discharge Would you be able to support him/her to do this exercise regularly or would you need help? Medications What, if any changes have you considered in supporting him/her to take medications regularly?  What effect do you think that would have on their health?  What do you think has been his/her experience to manage his/her medications before his/her stroke? What are some of the struggles he/she might anticipate for taking his/her medications regularly now that he/she has had a stroke?  What would help him/her to take medications each day without missing the doses? What would motivate you to help him/her to take medications without missing any doses?  Smoking (Ask about smoking only if the patient is identified as a smoker from the quantitative interview) What effect do you think smoking has on his/her health? Has he/she tried to quit before? If so, What were some of the struggles he/she has experienced in his/her attempt to quit smoking?  What are some steps you think you could take to help him/her quit smoking? Resources to support the lifestyle changes What resources you think would help him/her to make the changes in their lifestyle? (e.g., family members, friends, media, community groups, doctor). To explore missed areas, if any.  Have we missed anything? Probe about what has been missed in the interview. Have you got any further information for us in the area of exercise, diet etc?   164   Questions and prompts 2 weeks after discharge  Establishes preferred methods of information dissemination.   You mentioned about x, y, and z.... how would you like to learn about these things to support him/her make those changes to their lifestyle? (Mention only about the areas the participant wanted to improve on).  What, if any, information/education have you received about x, y, and z ?(e.g., leaflets, a class, a demonstration, a talk). How did you find it useful? Establishes motivating factors for participation in a lifestyle intervention program. We want to develop a program for people like your partner with stroke for stroke prevention. What kind of services you would like to see for patients with stroke? A lot of people struggle to makes changes to their lifestyle in order to prevent another stroke. What do you think is needed to help those people to prevent another stroke?   We are thinking of developing a stroke prevention program and it would include discussion on healthy lifestyle and exercise classes. What would motivate you to sign up and continue to attend?   Summarize the discussion • Allows clarification and participant consensus on the themes discussed • Set up an approximate date and time and venue for the next interview: _______________         165  Subject ID: _________      Date: _____________  Data Collection & Interview Booklet 6 months  RA is to explain this part to the participant before commencing the interview. Thank you for agreeing to participate in the interview again. In the first interview which was held soon after Mr./Mrs.-----discharge from the hospital we discussed about your attitudes and perceptions, and anticipated challenges and barriers for supporting him/her to participate in activities to maintain a healthy lifestyle. The purpose of this interview is to explore, if any, changes in your attitudes and perceptions towards lifestyle modifications in the last six months and the challenges and barriers you have experienced in your ability to support him/her as he/she was recovering from stroke. The  interview will be audiotaped and  be assured that the audiotaping can be stopped at any time during the interview and that the interview can also be terminated at any time.   Information for the RA There are 6 main questions. Depending on the direction of the interview, the interviewer may ask additional questions as prompts to encourage the participants to discuss pertinent issues.  It is important to reassure participants that there are no right or wrong answer. It is possible that sometimes answering questions related to stroke and healthy lifestyle make people uncomfortable and blame themselves, and feeling responsible for having stroke. The participants may also feel bad for not being able to answer the questions or answer them correctly. You are required to reassure them that they would not be judged based on their responses to the questions and not answering or answering inappropriately would not compromise the services their loved one receive, if any. The entire interview may take an hour long. They do not have to answer all of the questions, and any that make them feel uncomfortable they may skip. The information we gather from them will benefit others who work on organizing various programs to prevent patients from having strokes and to support those who already have a stroke.  166  Questions and prompts 6 months after discharge 1. Get participants to reflect on healthy lifestyle What does a healthy lifestyle mean to you? (Probe about diet, exercise etc if needed to steer the conversation) What if any, your lifestyle factors do you think has had an impact on him/her health? 2. Gets participants to identify both facilitators and personal barriers to healthy-lifestyle participation.  (Summarize the discussion from the first interview on intended lifestyle changes).  Looking back, what new changes in Mr./Mrs.----- lifestyle have you helped to make changes since he/she had stroke and discharged from the hospital? Prompt as needed as below  Diet What has been your experience to support him/her to follow a healthy diet since he/she had the stroke? What has helped him/her to follow a healthy diet since he/she had stroke? What kind of barriers or stumbling blocks did he/she face since he/she had a stroke to follow a healthy diet? How did he/she overcome those barriers? Exercise What has been your experience to support him/her follow an exercise routine since he/she had the stroke?  What has helped him/her to exercise? What kind of barriers or stumbling blocks did he/she face since he/she had a stroke to exercise? How did he/she overcome those barriers? Medications What has been your experience supporting him/her manage the medications he/she take? What helped him/her to take medications each day without missing the doses?  167  Questions and prompts 6 months after discharge What are some of the struggles he/she have experienced in taking medications on a regular basis since he/she had the stroke? Smoking Has he/she tried to quit since he/she had stroke? How was the experience?   What were some of the struggles he/she experienced in his/her attempt to quit smoking?  What are some steps you think you could take to help him/her quit smoking again?  3. Get participants to identify resources or strategies to support the lifestyle changes If they were unable to make and sustain any of the above mentioned life style changes, ask What are some of your motivations for wanting to support him/her to make changes to their lifestyle?  What resources you think that have helped him/her to make the changes in their lifestyle? (e.g., family members, friends, media, community groups, doctor). What are some steps you think you could take to help them start making changes in his/her lifestyle? 4. To explore missed areas, if any.  Have we missed anything? Probe about what has been missed in the interview. Have you got any further information for us in the area of exercise, diet etc?  5. Establishes preferred methods of information dissemination. What, if any, information/education have you received about X, Y & Z since he/she had the stroke to support him to make changes to her/his lifestyle?  (e.g., leaflets, a class, a demonstration, a talk) (Mention only about the areas the participant wanted to improve on).  How did you find it useful?     168  6. Establishes motivating factors for participation in a lifestyle intervention program. Have you participated in any group or individual stroke prevention programs with him/her or for him/her since they had the stroke?  Could you describe about the program?  What has been your experience? What has helped you to keep on attending the program?  We want to develop a program for people like Mr/Mrs.----     with stroke. It would include discussion on healthy lifestyle and exercise classes. What do you think would motivate him/her to sign up and continue to attend? 8. Summary of deviant cases and ask for their thoughts and perspectives  Provide a summary of the cases such as someone not wanting to make changes to their lifestyle or someone who had to take on a new role or change their role due to stroke. Explain these different situations from other interviews and invite their thoughts/perspectives on these cases.   Summarize the discussion  Allows clarification and participant consensus on the themes discussed  Have we missed anything? Have you got any further information for us?                        169  Appendix F:  List of Excluded Studies  1. Aadal L, Angel S, Langhorn L, Pedersen BB and Dreyer P. 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Zhou B., Zhang J., Zhao Y., Li X., Chen S., Wang N., Xie B., Zhang Y., Bettger J.P., Luo R., Lindley R., Anderson C., Lamb S., Wu Y., Shi J. and Yan LL. A randomized controlled trial on rehabilitation through caregiver delivered nurse-organized service programs for disabled stroke patients in rural china (the recover trial). 2016.            178  Appendix G: PEDro Scale     179    Study Eligibility criteria Random allocation Concealed allocation Baseline comparability Blind subjects Blind therapists Blind assessors Adequate follow-up Intention-to-treat analysis Between-group statistical comparisons Point estimates and variability Total score Wan 2016 Yes Yes Yes Yes No No Yes Yes No Yes Yes 7 Kerry 2013 Yes Yes Yes Yes No No Yes Yes Yes Yes Yes 8 Hornnes 2011 Yes Yes Yes Yes No No Yes Yes No Yes Yes 7 Irewall 2015 Yes Yes No Yes No No No Yes Yes Yes Yes 6 Sit 2007 Yes Yes No Yes No No No No Yes Yes Yes 5 Allen 2009 Yes Yes Yes Yes No No Yes Yes Yes Yes No 7 Ellis 2005 Yes Yes Yes Yes No No Yes Yes Yes Yes Yes 8 Flemming 2013 Yes Yes No Yes  No No No Yes No Yes Yes 5 Green 2007 Yes Yes Yes Yes No No Yes No Yes Yes Yes 7 Mackenzie 2013 Yes Yes No Yes  No No No Yes No Yes Yes 5 Nir 2004 Yes Yes No Yes No No Yes Yes No Yes Yes 6 Hornnes 2014 Yes Yes Yes Yes No No Yes Yes Yes Yes Yes 8 Jonsson 2014 Yes Yes No No No No No Yes No Yes Yes 4 Olaiya 2017(1) Yes Yes No Yes Yes No Yes Yes Yes Yes Yes 8 Olaiya 2017(2) Yes Yes No Yes Yes No Yes Yes Yes Yes Yes 8 Wang 2013 Yes Yes No Yes No No No Yes No Yes Yes 5   180  Appendix H: Study Characteristics  Author; Year; Country; Pedro score Sample Characteristics Description of Intervention Intervention duration and frequency Outcome Measures Outcome Measurement Time points Allen et al. 2009 US  Pedro score=7  Ischemic stroke  Intervention(n = 190) Mean age= 68.5  (SE 1) Control(n = 190) Mean Age= 69  (SE 1) Intervention group:  In-home assessment, education, care planning and  interdisciplinary review of the care plan, personalized health record, and periodic phone calls. Nurse worked collaboratively with the GP, attended doctor visits as needed, and offered home visits by physical therapist as needed.   Control group: usual care, plus receiving educational materials every 2 months.  In-home assessment ≤1 week of discharge. All patients were contacted by phone once/week for the first month post-discharge, then once/month until the end of the study (6 months post-discharge). Home visits as required.    - Neuromotor Function - Institution time or death - Quality of Life  - Management of blood pressure, depression, medication appropriateness, hemoglobin, total cholesterol, falls, incontinence, recurrent stroke - Stroke Knowledge, alcohol use, smoking, and exercise. Baseline and 6 month post discharge   181  Author; Year; Country; Pedro score Sample Characteristics Description of Intervention Intervention duration and frequency Outcome Measures Outcome Measurement Time points Primary care physicians were sent a written patient summary. Ellis et al. 2005 Scotland   Pedro score=8    Stroke or TIA  Intervention (n=100) Mean age (95%CI) = 64.3 (62.4-66.4) years Control (n=105) Mean age (95% CI) = 65.8 (64.0-67.5) years  Intervention group:  Individual advice on lifestyle changes and written information.   Control group: usual care   Face to face meeting monthly for 3 months  with a duration of  30 mins each time.  Primary outcomes:   - Self-reported number of cigarettes per day - Systolic and diastolic blood pressure - Random blood glucose  - HbA1C -Total cholesterol   Secondary outcome measures:  EuroQol perceived health status,  Geriatric depression score, stroke service satisfaction Baseline and follow- up at 5 months.     182  Flemming et al. 2013  USA   Pedro score=5   Stroke  Intervention (n = 20)  Age: 73.3 (SD 13)  Control  (n = 21) Age: 71.0 (SD 9)   Intervention group: Assessment using standardized protocols, providing education and motivational interviewing, and assisting with goal planning. Collaboration with the physician,    registered dietitian and an exercise physiologist. Telephone follow up  Control group: usual care Nurses spent 1 hour with each patient during the baseline and 1 year assessment visit and 30 minutes with each patient during the interim visits. The study physician spent approximately 15 minutes with the patient per visit after the nurse had concluded the patient interview. Blood pressure, HbA1c, cholesterol, cardiovascular risk score, BMI, physical activity,  alcohol & tobacco use, diet   Baseline and at 1 year   Green et al.2007 Canada  Pedro score=7  Stroke   Intervention (n=100) Mean age: 66.26years  Control ( n=100) Mean age: 67.24 years Intervention group:  Patients in the intervention group received nurse-mediated motivational counseling, group interactive lifestyle class attended by both patient and family members, goal planning. Other Nurses conducted individual interview as part of the clinic visit for 15 to 20 minutes. Within one to two months of the initial clinic visit, study nurse coordinated the group class. The group class generally ranged from 50 to 75 participants and consisted of a Primary outcome:  - knowledge acquisition and retention  Secondary outcome: - a description of stage of change in relation to risk factor modifications for each lifestyle risk factor identified by the patient:   Smoking Baseline, post-appointment, and three months post-appointment.  183  members such as nutritionist and a social worker took part in the education. Patients received a lifestyle class manual with information reflective of the oral presentations.  Control group: Usual care and the participants had an opportunity to attend the lifestyle class following the three-month interview.  three-hour interactive teaching session.     Exercise  Weight loss  Alcohol intake  stress   Hornnes et al. 2011  Denmark  Pedro score=7   Stroke or TIA  Intervention( n = 172)  Age: 70.2 (SD 13.7) Control( n = 177) Age: 68.5 (SD 12.2) Intervention group: Home visits, measurement of BP, education, and healthy lifestyle counseling   Control group: usual care  The study nurses visited the intervention group participants in their own homes 1, 4, 7, and 10 months. Each visit typically took about an hour.  -Recurrent event -GP visits -Medication compliance -change in systolic BP Baseline & at 1 year     184  Hornnes et al. 2014 Denmark  Pedro score=8  Stroke or TIA  Intervention(n=116) Age=71 (58-79) Control(n=138) Age= 70 (60-79)   Intervention  group: Study nurses performed motivational interview during home visits with a focus on smoking cessation.  Written smoking cessation guides,  information about the national free of charge telephone-based smoking cessation support, and information about the nicotine replacement therapy (NRT) were provided to the participants.    Control group: Usual care and lifestyle counselling including one session with a nurse trained to do a motivational interview. Study nurses  conducted home visits one, four, seven and ten months after discharge from hospital. Visits usually lasted for an hour.  Primary outcome:  Smoking cessation Baseline and 2 years after stroke.    185  Irewall et al. 2015 Sweden  Pedro score=6    Stroke or TIA  Intervention(n=266) Age=71.5 ± 11.1 Control (n=271) Age= 70.1 ± 10.4 Intervention group: Telephone-based lifestyle counselling, education and assessment of pharmacological treatment, consultation with the physician for adjustment of medications.   Control group: Usual care Median # of calls in the 1 year study period=4 Those who had BP over the range had median # of calls 6 in 1 year period Blood pressure, LDL Baseline and 12 months Jonsson et al. 2014 Sweden  Pedro score=4 Stroke  Intervention(n=232) Age=75(67-82) Control (n=227) Age= 75(67-80)  Intervention group: Stroke nurse offered supportive counseling on lifestyle, sent a referral to the physician and other health care team members as needed,   Control group : Usual care Stroke Nurse visited the patients at 3 months and at 1 year after stroke. -Health status 1 year after stroke -SBP -anxiety/depression -General health 3 months and 1 year after stroke  186  Olaiya et al. 2017(1) Australia Pedro score= 8 Stroke or TIA  Intervention(n=283) Age=69(13.04) Control (n=280) Age= 71.2(13.48)  Intervention group: Nurse developed an individualized chronic disease management plan in consultation with stroke specialist, sent this plan to GP, education on risk factors during home visit, and arrangement of the GP appointment and continued education during follow up visits.   Control group : Usual care Baseline assessments were conducted at 10 weeks post discharge. Nurse visited home at baseline and at 3 months followed by a telephone call at 6 months. Final outcome measurement was done at 12 months.  -Change in Framingham Risk Score -this includes systolic blood pressure, HbA1c, Total cholesterol, HDL, smoking, alcohol use.  Baseline, 3 months   and at 12 months Olaiya et al. 2017(2) Australia Pedro score= 8  Same as above   Same as above Same as above -Change in physical activity level Same as above Kerry et al. 2013 UK  Pedro score=8 Stroke or TIA  Intervention(n=187) Age=72.6±11.4 Control(n=194) Intervention group: Provided a free blood pressure monitor, training to the participant and care provider to take blood Participants, care provider or both were taught how to take blood pressure. The nurse telephoned participants after a week and revisited The primary outcome:   - systolic blood pressure   Secondary outcome:   Baseline, and at 6 and 12 months   187     Age=71.1±12.6 pressure and telephone support. Referred patients to the physician as needed.      Control group: Usual care  after a month to check technique and review blood pressure readings. The nurse also telephoned at 3 and 9 months (and at 6 months if the reading taken by the research assistant was elevated).   - systolic blood pressure -diastolic blood pressure - number of antihypertensive drugs Mackenzie et al.  2013 Canada  Pedro score=5  Stroke or TIA  Intervention(n= 29) Control(n=27) Age> 65 years =33  Intervention group:  Stroke physician specialist assessment and treatment, nurse-led case management program which includes monthly telephone calls for motivational interviewing for lifestyle change, home BP monitoring and use of dosettes for medication administration  Control group: Usual care Stroke physician specialist assessment, Monthly telephone call for 6 month long MI counselling and BP check at home.     -Medication compliance -Blood pressure -Self efficacy Baseline and 6 months  188  risk factor counseling at clinic, and had access to clinic services.   Nir et al. 2004 Israel  Pedro score=6   Stroke  Intervention (n=73) Mean age (sd) = 72.3 (6.8)years Control (n=82) Mean age (sd) = 73.8 (7.6)years Intervention group: Patients participated in the standard inpatient rehabilitation program. Additionally, patients and their caregivers participated in the structured written nursing intervention program conducted by the nursing students. To standardize the program  the student nurses closely followed the guidebook.   Control group: Usual care The nursing students met with the patients in the intervention group and their caregivers once a week, for 12 consecutive weekly sessions of 1–2 hrs each. The intervention began in the first week after admission to the rehabilitation department and continued at home after discharge. Outcomes: -Functional status,  -depression, -self-perceived health,  -self-esteem,  -dietary adherence Patients were evaluated at three points: during the first week of  admission to the rehabilitation department (baseline data) and after 3- and 6-mo intervals. Sit et al. 2007 Hong Kong, China Stroke  Intervention( n = 77) Age: 62.8 (SD Intervention group: Nurses conducted group education classes with 10 to 12 participants in each Nurses held group education classes of eight two-hour sessions once a week. BP, Cholesterol, smoking, alcohol, diet, exercise, medication compliance, stroke knowledge Baseline, 1 week & 3 months post stroke  189   Pedro score=5  10.3) Control(n = 70) Age: 64.0 (SD 12.0) class. Sessions promoted group interaction, individual reflection, goal setting, and action planning. Used personal log sheets and a pedometer.    Control group:  Usual care Wan et al. 2016 China   Pedro score=7   Stroke  Intervention(n = 46) Age: 59.07 ± 12.36 Control( n = 45) Age: 60.24 ± 12.57    Intervention group:  The intervention group participated in the goal setting telephone follow-up program. The education sessions promoted self-management techniques and maintenance of behavioral improvements. The telephone follow-up sessions consisted of goal setting advice and assisting patients to set measurable The participants received the same stroke education as the control group with an additional 3 telephone follow-up calls at 1 week and at 1 and 3 months after discharge, each lasting 15-20 minutes. The primary outcome:  level of health behaviors such as physical activity, nutrition, BP check-up, smoking abstinence, use of alcohol, medication adherence  Secondary outcome: mRS score Data were collected from all participants at baseline and at 3 and 6 months post discharge  190  behavioral goals and develop action plans.   Control group: Usual care. Wang et al. 2013 Taiwan Pedro score= 5  Stroke Intervention (n=65) Mean age (sd) = 67.3 (12.8)years Control (n=62) Mean age (sd) = 67.2 (10.4)years Intervention group: Two stroke educational sessions focusing on warning signs, risk factors, diet, social activities and rehabilitation followed by communication seminars sharing experience with each other.  Lastly in the patient support groups, nurses and therapists in the community talked to them on daily living skills.  Control group: Usual care. Two stroke educational sessions, a communication seminar, and a patient support section with each session lasting 2 hours in the 8week period.   Outcomes:  -knowledge of signs and risk factors of stroke Pretest evaluation before the intervention, 3 month and 6 month follow up.    

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