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Recovery after elective thoracic endovascular aortic repair : an exploratory study of patients' experiences Taipale, Priscilla 2020

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  RECOVERY AFTER ELECTIVE THORACIC ENDOVASCULAR AORTIC REPAIR: AN EXPLORATORY STUDY OF PATIENTS’ EXPERIENCES  by Priscilla Taipale  B.S.N., Laurentian University, 2001 M.S.N., The University of British Columbia, 2010    A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF  DOCTOR OF PHILOSOPHY  in  The Faculty of Graduate and Postdoctoral Studies (Nursing)    THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver)  December 2020  © Priscilla Taipale, 2020  ii  The following individuals certify that they have read, and recommend to the Faculty of Graduate and Postdoctoral Studies for acceptance, the dissertation entitled:  Recovery After Elective Thoracic Endovascular Aortic Repair: An Exploratory Study of Patients’ Experiences                                                                                                                           submitted by     Priscilla Taipale                             in partial fulfillment of the requirements for the degree of     Doctor of Philosophy                                                                                                                                                                                                                                                                                                                                                                                                         in               Nursing                                                                                                                                                                                                                                                                                       Examining Committee: Dr. Bernie Garrett, Associate Professor, School of Nursing, UBC                                                    Supervisor    Dr. Susan Holtzman, Associate Professor, Department of Psychology, UBC                                   University Examiner  Dr. Maura McPhee, Professor, School of Nursing, UBC                                                                   University Examiner  Additional Supervisory Committee Members:  Dr. Alison Phinney, Professor, School of Nursing, UBC                                                                   Supervisory Committee Member  Dr. Sandra Lauck, Clinical Associate Professor, School of Nursing, UBC                                       Supervisory Committee Member       iii  Abstract Thoracic endovascular aortic repair (TEVAR) is a highly specialized, and relatively uncommon surgical intervention to treat thoracic aortic disease (TAD) and prevent lethal aortic rupture. Current TEVAR research reports conventional clinical outcomes and lacks evidence of patient’s experiences. The aim of this work was to investigate the post-operative recovery experiences of patients who had undergone elective TEVAR and explore what patient factors were evident in their experiences of recovery and what perspectives can inform practitioners’ understanding of the recovery process.  A qualitative interpretive description methodology guided the design, and the work focused on the recovery process occurring in hospital and after discharge. A clinical review of medical records of 106 elective TEVAR patients were analyzed, and 16 patients who had undergone elective TEVAR were interviewed, and data were analysed with descriptive statistics and content analysis.   The clinical review showed patients who had TEVAR tended to be male, 70 years and older with significant comorbidities, and more than 90% experienced post-operative complications. Key themes of a serious, frightening event, vulnerability, an obscure, complex chronic illness and continuous uncertainty on an unrelenting journey emerged from the participant interviews. The major findings were that patients recovering from elective TEVAR have unique needs evidenced by the intricacies of various aortic pathologies, duration of hospital stay, and rate of post-operative complications. This patient population exhibits a significant level of chronicity evident from the physical and psychological challenges experienced during recovery in-hospital and at home. Additionally, patients who had elective TEVAR found themselves in a continuous cycle of transition.  iv   This study is unique because it brings the voices of patients and their experiences of recovery after elective TEVAR to the forefront, and the findings underscore the complexity and chronicity of TAD. This study also points to the need for more attention to aortic pathology, potential differences based on sex, and the need for increased attention to psychological aspects of recovery. Overall, the burden of recovery from TEVAR, continuous health maintenance and lifelong uncertainty experienced by patients emphasizes that elective TEVAR should be undertaken cautiously and only when adequate, holistic, multidisciplinary and life-long patient-centered supports are available.    v  Lay Summary   Thoracic endovascular aortic repair (TEVAR) is a type of surgery performed by a specialized team to treat enlargement of the aorta referred to thoracic aortic disease (TAD). Most of the research tells us about the rate of complications after TEVAR but does not include patients’ experiences of recovery. In this study, I interviewed past TEVAR patients and reviewed medical records in-order to describe patients’ experiences of recovery from TEVAR.    The results showed diagnosis of TAD was a serious and frightening event, and TEVAR patients were vulnerable because of their uniqueness, and they experienced uncertainty for the remainder of their lives. Patients who have non-emergent TEVAR were mostly men in their 70’s who had other illnesses and diseases, stayed in hospital for approximately one week, and many experience at least one complication. Overall, more work is needed to support patients’ physical and emotional needs during recovery.    vi  Preface This dissertation is the original, independent intellectual product of the author P. Taipale. This study was granted approved by UBC Research Ethics Board H17-02566. Operational approval was granted by Vancouver Coastal Health Operational and Providence Health Care.   The study was conducted with the help of D. Hamel who was a research assistant for this study.  The members of the supervisory committee, Dr. B. Garrett, Dr. A. Phinney and Dr. S. Lauck provided guidance with the development of the research project, methods, analysis and writing of the dissertation.   All inferences, opinions, and conclusions drawn in this dissertation are those of the author and may not reflect the opinions or policies of UBC.               vii  Table of Contents Abstract .......................................................................................................................................... iii Lay summary .................................................................................................................................. v Preface............................................................................................................................................ vi  Table of Contents ........................................................................................................................... vi List of Tables .................................................................................................................................. x List of Figures ................................................................................................................................ xi List of Abbreviations .................................................................................................................... xii Acknowledgements ....................................................................................................................... xv Dedication ................................................................................................................................... xvii CHAPTER 1    Introduction............................................................................................................ 1            1.1   Defining Important Terms .......................................................................... 2            1.2   Problem Statement, Purpose and Rationale ................................................ 4            1.3   Research Questions ..................................................................................... 5            1.4   Research Significance ................................................................................. 5            1.5   Organization of the Dissertation ................................................................. 7 CHAPTER 2     Literature Review ................................................................................................. 8              2.1  The Aorta And Thoracic Aortic Disease ................................................... 8                2.1.1   Thoracic Aortic Aneurysms.............................................................. 9                2.1.2   Thoracic Aortic Dissections ........................................................... 10                   2.2   Symptoms And Diagnosis ..................................................................... 11               2.3   Medical Treatment ................................................................................. 12               2.4   Surgical Intervention ............................................................................. 13                2.4.1   Conventional Aortic Surgery ......................................................... 14                2.4.2   Thoracic Endovascular Aortic Repair (Tevar) .............................. 15                2.4.3   Selecting Patients For Elective Tevar............................................ 16               2.5   Tevar Outcomes ..................................................................................... 17               2.6   Post-Operative Recovery  ...................................................................... 19                2.6.1   Dimensions Of Recovery According To Allvin Et Al. (2008) ......... 20               2.7   Integrating Patient's Perspectives In Tevar Research ............................ 22               2.8   Summary ................................................................................................ 24 CHAPTER 3     Methods .............................................................................................................. 25             3.1   Interpretive Description .............................................................................. 26             3.2   Recovery and Care Conceptual Frameworks ................................................ 27              3.2.1    Dimensions of Post-Operative Recovery .............................................. 28              3.2.2   The British Columbia Patient Centered Care Framework .............. 30             3.3   Study Design and Setting ............................................................................ 31 viii               3.3.1    Design ............................................................................................. 31              3.3.2   Study Setting..................................................................................... 33             3.4   Sample And Recruitment ............................................................................ 34              3.4.1    Inclusion and Exclusion Criteria .................................................... 34                           3.4.2    Sample Size ...................................................................................... 36                            3.4.3    Interview Recruitment ..................................................................... 38             3.5   Ethical Approval ...................................................................................... 40              3.5.1     Inclusion of Family Members ......................................................... 40              3.5.2     Confidentiality ................................................................................ 41             3.6    Data Collection ........................................................................................ 41             3.7   Operationalizing Allvin Et Al.’S (2009), Dimensions Of Recovery ....... 42              3.7.1    Interviews ........................................................................................ 42                3.7.2    The Clinical Review ........................................................................ 44               3.8    Data Analysis ......................................................................................... 49               3.8.1   Analysis of the Clinical Review Data .............................................. 49               3.8.2   Analysis of Participant Interviews .................................................. 51             3.9    Credibility ................................................................................................ 54              3.9.1    Epistemological Integrity ................................................................ 55              3.9.2    Representative Credibility ............................................................... 55              3.9.3    Analytic Logic ................................................................................. 56              3.9.4    Interpretive Authority ...................................................................... 56            3.10   Summary ................................................................................................. 57 CHAPTER  4      Study Findings .................................................................................................. 58               4.1   The Elective Tevar Population ............................................................... 59               4.2    Missing Data .......................................................................................... 60                             4.3    Recruitment for Participant Interviews ................................................. 60               4.4    Demographic Results ............................................................................. 61                     4.4.1    Describing The Elective Tevar Population ................................... 61                 4.4.2    Demographic Data Of Interview Participants ............................. 63               4.5   Major Interview Themes ........................................................................ 64                4.5.1    A Serious, Frightening, Diagnosis ................................................ 65                4.5.2   Vulnerability and an Obscure, Complex, Chronic Illness ............. 73                4.5.3    Continuous Uncertainty on an Unrelenting Journey .................... 82               4.6   Summary of Findings ........................................................................... 107 CHAPTER  5     Discussion ........................................................................................................ 108              5.1   The Recovery Journey ........................................................................... 108              5.2    The Chronicity of TAD and TEVAR.................................................... 110                5.3.1    Fatigue and Recovery .................................................................. 112                5.3.2    Reinterventions Interrupting Recovery ....................................... 113              5.4    Patient Needs During Recovery ............................................................ 114 ix                 5.4.1    Sense of Security to Alleviate Vulnerability ................................ 115                5.4.2    Supported Transitions of Care .................................................... 115                5.4.3    Attention to Psychological Recovery ........................................... 117              5.5    Different Recovery Courses Based on TAD Pathology ....................... 118               5.5.1    Acute Aortic Dissection, TEVAR and Recovery Experiences ...... 118               5.5.2    DTA Versus TAAA Recovery Experiences ................................... 119              5.6     Differences in TEVAR Recovery for Female Patients ........................ 120              5.7     Strengths and Limitations .................................................................... 122                5.7.1    Study Strengths ............................................................................ 122                5.7.2    Limitations ................................................................................... 125              5.8     Summary .............................................................................................. 128 CHAPTER 6      Conclusion ....................................................................................................... 129               6.1    Overview .............................................................................................. 129               6.2    Key Findings ....................................................................................... 131               6.3    Future Research ................................................................................... 131               6.4    Implications for Nursing ...................................................................... 133               6.5    Recommendations ............................................................................... 136                6.5.1     Acute Care Setting Recommendations ....................................... 136               6.5.2     Specialty Out-Patient Aortic Clinic Recommendations .............. 137               6.5.3     Primary Care Recommendations ................................................ 138               6.6    Conclusion ........................................................................................... 138 References ................................................................................................................................... 140 Appendix A     The Thoracic Aorta ............................................................................................ 155 Appendix B      BC Ministry of Health – Patience Centered Care Framework (2014) .............. 156 Appendix C      Telephone Script for CTAD Administrative Assistant ..................................... 157 Appendix D      Consent Form .................................................................................................... 158 Appendix E      Interview Guide Questions ................................................................................ 161 Appendix F      Clinical Review Data Collection Tool ............................................................... 162        x  List of Tables Table 1: Inclusion and Exclusion Criteria .................................................................................... 35 Table 2: Interview Questions & Factors and Dimensions of Recovery ........................................ 44 Table 3: Creating Variables for the Clinical Review .................................................................... 48 Table 4: Identification of Elective TEVAR Patients Included in the Clinical Review ................ 59 Table 5: Demographic Characteristics of Clinical Review Participants ....................................... 62 Table 6: Demographic Information for Interview Participants ..................................................... 63 Table 7: Structure of Major Interview Themes ............................................................................. 65 Table 8: Frequency of Pre-Operative Co-Morbidities by Sex & TAD Pathology ....................... 71 Table 9: Aortic Risk Factors & Surgical History by Sex and Pathology...................................... 72 Table 10:  Peri-procedural Details of Elective TEVAR by Pathology of TAD ............................ 81 Table 11: Duration of Events in Post-operative Recovery from Elective TEVAR ...................... 92 Table 12: Length of Hospital Stay and Discharge Disposition ..................................................... 93 Table 13: Post-Operative Complications After Elective TEVAR ................................................ 95 Table 14: Dimensions of Recovery by Post-Operative Day (N = 106) ........................................ 97                xi  List of Figures Figure 1: Allvin’s et al.’s (2009) Dimensions of  Post-operative Recovery ................................. 29 Figure 2: Recruitment Strategy ..................................................................................................... 39 Figure 3: Population for Clinical Review and Recruitment for Interviews .................................. 61 Figure 4: Activity – Location of Care ......................................................................................... 101 Figure 5: Activity – Ventilation, Oxygen Requirements & CSF Drains .................................... 103 Figure 6: Physical Functions – Diet, Mobilizing & Elimination ................................................ 104 Figure 7: Physical Symptoms – Analgesia, Sedation, Antiemetics & Transfusion .................... 105 Figure 8: Psychological Recovery: Delirium, Anti-psychotics, Fever & IR or OR Procedures.................................................................................................................................................. ...106              xii  List of Abbreviations Abbreviation Definition  AA Administrative assistant AAA AF  ASA BC BM BMI BREB CABG CAD CHF CIHI COPD CHF Abdominal aortic aneurysm Atrial fibrillation American Society of Anesthesiologists British Columbia  Bowel movement  Body mass index Behavioural research ethics board Coronary artery bypass graft Coronary artery disease Congestive heart failure  Canadian Institutes of Health Information  Congestive obstructive pulmonary disease  Congestive heart failure CSICU CNS Cardiac surgery intensive care unit Clinical nurse specialist CSF CT Cerebral spinal fluid Computer tomography CTAD Centre for Thoracic Aortic Disease CVA DTA GI Cerebral vascular accident Descending thoracic aneurysm Gastro-intestinal GFR Glomerular filtration rate xiii  GU Genitourinary ED Emergency Department EVAR Endovascular aortic repair HCP Healthcare provider ICU Intensive care unit ID Interpretive Description IR IV Interventional radiology/radiologist Intravenous  MAR MI MRI NPO NIOM Medication administration record Myocardial infarction Magnetic Resonance imaging  Nothing per os  Neurophysiological operative monitoring OR PCC PO PONV Operating room Patient care coordinator Per os  Post-operative nausea  POD Post-operative day PONV Post-operative nausea and vomiting PRN RBC Pro re nata Red blood cells SMA Superior mesenteric artery TAA Thoracic aortic aneurysm TAAA Thoraco-abdominal aortic aneurysm TAD Thoracic aortic disease xiv  TIA Transient ischemic attack TEVAR UBC UTI Thoracic endovascular aortic repair University of British Columbia Urinary tract infection       xv  ACKNOWLEDGEMENTS As a member of Taykwa Tagamou Nation with mixed Cree, Finnish, and English heritage, I am privileged to live, study, learn, and conduct this work on the traditional, unceded territories of the Musqueam, Squamish, and Tseli-Watuth peoples.  Without a doubt, this PhD has been a roller coaster ride of illness, health, change, perseverance, stubbornness, immense learning, a global pandemic, and outright professional and personal growth. The support of numerous people in big ways and small, have helped me to reach this goal.    My PhD journey began under the supervision of Dr. Tarnia Taverner, Dr. Joy Johnson & Dr. Rick Sawatsky but unfortunately that study had to remain incomplete. Regardless, I have immense gratitude to you all for your investment of time, expertise, and guidance to help get me to candidacy. Thank you.   My current committee of Dr. Bernie Garrett, Dr. Alison Phinney and Dr. Sandra Lauck have made this dissertation possible. At every step they led, supported, encouraged and when necessary, picked me up and dusted me off during this journey.   To my supervisor Bernie. You willingly took me on as a student in the midst of some uncertainty and change and stayed the course to lead and guide me to the finish line. You have been understanding and accommodating in so many ways. I am so grateful for all your efforts to keep me organized and on track allowing me to focus on the difficult task of writing. Thank you.  To Alison, you were the PhD academic advisor when I was at that pivotal crossroad and with your help, I was able to see a path to completion. I was then fortunate to have you agree to be on this committee where your expertise turned my fear of qualitative methods to intrigue and amazement of the power of the patient story. The enthusiasm you expressed during many discussions of the analysis was both motivating and reassuring that this study was important.  Thank you.  To Sandra. Our professional nursing lives intersected in the world of cardiac sciences and if they hadn’t, this dissertation may not have ever happened.  You have made such a tremendous contribution to cardiac nursing that we are lucky to have you here in Vancouver and especially at UBC to mentor and develop students like me. You have been such an influence on my career as an advanced practice nurse, leader, and scholar and you were committed to get me to the end. For that I will be forever grateful. Thank you.   I also want to thank all the individuals who participated in this study and entrusted me to tell their stories. I have the utmost respect and gratitude for you. Your selfless desire to help others, xvi  influence, and inform the provision of care with your lived experiences is a stark reminder of why we do what we do and makes us strive to serve you better. Thank you.  Finally, to my family and friends for listening to all the trials and tribulations from the start of my PhD to now. Justin you have been my rock through and through – you are my family.  Thank you everyone for your constant encouragement, love, and the reminders along the way to stop and smell the sweetgrass.     xvii  DEDICATION  To the two most important women in my life, my mother Lorraine Ross and my grandmother Kaye Taipale.  Mom, you are always there to listen, support, cheer me on, and laugh when I need you. It took me way too long to recognize your strength and resilience. I love you.  Granny, you have been gone a long time, but I still feel your warmth and love. I remember how proud you were to tell people I wanted to become a nurse. I miss you.           1  CHAPTER 1: INTRODUCTION  Cardiovascular nurses are charged with providing holistic patient-centred care. This is especially challenging when caring for patients after specialty surgical interventions that provide the illusion of a quick fix because they are minimally invasive. People with thoracic aortic disease (TAD) who undergo thoracic endovascular aortic repair (TEVAR) may be considered “cured”, but in fact little is known about their experiences of longer-term recovery. The purpose of this research is to examine this problem, specifically to understand the recovery experiences of these patients through a nursing lens. Thoracic aortic disease (TAD) is an insidious, lifelong, arterial disorder of the cardiovascular system that has potentially devastating and lethal implications. The disease is characterized by the degradation of the aortic wall from dilation and weakening of the vessel and results in aneurysm formation. Unlike acute coronary syndromes, TAD is much less common, and remains silent with sub-clinical development over a long period of time until the sudden presentation of an acute aortic event (Erbel et al., 2014). While TAD can be medically managed, some patients experience continued aortic growth and expansion, and require surgical intervention to prevent aortic dissection, or rupture and death. Thoracic endovascular aortic repair (TEVAR) is one means of surgical intervention and involves positioning a compressed, catheter contained endovascular stent graft inside the diseased aorta through a small incision under continuous fluoroscopy (X-ray). The goal of stenting the inside of the vessel is to depressurize the aneurysmal sac and prevent life-threatening expansion and rupture.  The first reported series of successful TEVAR occurred at Stanford University Medical Centre in 1994, by Dake and colleagues (Dake et al., 1994). In the decades that followed, TEVAR was resigned for use in acute aortic emergencies when survival with open surgical 2  repair was unlikely (Droc et al., 2015). Despite the promise of TEVAR, anatomical challenges of stenting the aorta persist today, open aortic resection remains the conventional gold standard while TEVAR is indicated for higher risk and other more complex patients (Dick et al., 2008; Coady et al., 2010; DeLarose & Vasquez, 2013). Ongoing improvements to both graft design and delivery techniques have expanded the indication for TEVAR, this minimally invasive aortic surgery is now offered to patients on an elective basis (Bicknell & Powell, 2015). Advances in technology allow for continuous evolution of TEVAR, which is evaluated in research studies examining the utility and effectiveness of this intervention. Whilst most studies compare treatment modalities and disease management approaches the outcomes reported by researchers and clinicians are primarily derived from a narrow perspective. Areas of focus typically include analytical techniques such as survival analysis, predictive risk modeling, and the comparison of medical and surgical treatment modalities based on morbidity and mortality as indicators. Missing from this body of literature are the experiences from patients who live with TAD, undergo elective TEVAR, and then endure the recovery from this surgical intervention. As well, nurse led TEVAR research is almost non-existent, creating a significant gap in evidence to effectively guide nursing care and improve the health and quality of life of patients. Thorne (2016) reminds us that nursing is centered on the health and illness experience and nursing research is the posing of questions to address distress, frailty, and vulnerability to make sense of ailments that affect us as humans.   1.1 Defining Important Terms To address this significant gap, a patient centred approach was used to explore recovery from elective TEVAR by incorporating patient stories with clinical data regularly used to 3  evaluate patient care and patient outcomes. As the central phenomenon for this study, in this dissertation recovery is defined as:  Recovery is an energy-requiring process of returning to normality and wholeness as defined by comparative standards, achieved by regaining control over physical,  psychological, social, and habitual functions, which results in returning to  pre-operative levels of independence/dependence in activities of daily living   and an optimum level of psychological well-being (Allvin et al., 2007, pp. 557).  This definition conceptualizes recovery as a process not confined by parameters of time, and includes the individual having control over physical, psychological, social, and habitual functions, with the goal of finding an optimum level of psychological well-being, a crucial aspect not currently included in the TEVAR evidence. Another important term in this study that is important to clarify is the meaning of elective surgery. For this study, elective TEVAR surgery is a pre-planned, discussed and agreed upon treatment decision by the patient and care team that is performed in a non-urgent manner. Because TEVAR is also performed for emergency, life-threatening circumstances, a clear distinction between elective and emergency surgery is necessary as the process of decision making is substantially different and may influence patients’ perceptions and experiences in each circumstance.  The background information presented in the beginning of this chapter provides a rudimentary explanation of TAD and TEVAR, and the patient population impacted by severe aortic disease. I have also provided definitions of the concepts central to this study. The remainder of this chapter includes the purpose, research questions and significance presented below. Finally, the organization of this dissertation is described at the end of the chapter to help orient the reader to the presentation of this work.    4  1.2 Problem Statement, Purpose and Rationale The rapid pace of progress in endovascular surgery, and the increased number of patients offered elective TEVAR to treat complex TAD (Liao et al., 2012),  has resulted in a large number of studies evaluating TEVAR. This body of research has relied on methodological frameworks and conventional clinical indicators commonly used by healthcare researchers and policy makers which may not translate meaningfully at the bedside. Most concerning is the often silent, life-threatening nature of TAD and assumed benefit of elective surgery. Without sufficient evidence of patients’ lived experiences of recovery from TEVAR, evaluations of this high cost, low volume procedure can not be patient centered.   Having previously worked as the clinical nurse specialist for an out-patient aortic disease clinic for more than five years, I have heard compelling stories from individuals living with TAD about their challenges during recovery from aortic surgery. Providing care to patients during the surgery decision-making, and across pre-operative, intra-operative and post-operative stages has allowed me to bear witness to the emotional and physical struggles affecting patients at each stage of their surgical journey of elective TEVAR. This personal nursing experience has led me to critically consider the true magnitude of a procedure perceived and described as minimally invasive because it is a significant, life altering event with profound implications for health and well-being. This underscores the need to explore recovery after elective TEVAR from a more patient-centered approach.  The primary purpose of this study is to address the lack of research about how patients experience recovery after elective TEVAR from their perspective. Since each patient has their own unique, individual experience, it is important to ask patients and then incorporate their words and depictions to describe this phenomenon. Patients’ narrative accounts can be used to 5  formulate knowledge about the broader impact of the surgery on an individual’s life. With an approach that focuses on multiple dimensions and stages of recovery, the aim of this research study is to derive a comprehensive, patient centered description of post-operative recovery from  TEVAR. Exploring patients’ experiences following elective surgery is imperative for developing education, patient care guidelines, and program evaluation criteria to improve care.   1.3 Research Question(s) The study was designed and executed to answer three research questions. The primary, overarching research question is: What are the post-operative recovery experiences of patients who have undergone elective TEVAR surgery?  Two subsequent research questions were also developed to account for different phases of the recovery experience consisting of the in-patient hospital phase and the at-home discharged from hospital phase. The subsequent research questions are:  a)  What patient factors and intra-operative and post-operative events are evident in patient’s experience of recovery from elective thoracic endovascular aortic repair?  b)  What patient perspectives and experiences can inform practitioners’ understanding of the recovery process?  1.4 Research Significance This dissertation offers substantial new knowledge about how patients experience recovery from elective TEVAR. Nursing is a professional discipline where research evidence is applied to resolve problems with health and illness (Thorne, 2016). Nursing inquiry is pivotal to ensure perioperative processes of care meet the needs of patients undergoing and recovering from TEVAR. The findings can inform the development of pre-procedure planning, patient care pathways, and protocols to guide nursing care for this unique patient population. Evidence 6  garnered from the exploration of recovery after elective TEVAR through a nursing lens, allows for a more patient-centered approach to evaluate the current state of recovery from elective TEVAR. Most importantly, what we learn from this study can be used to help patients and family members to better plan and prepare for surgery and recovery, and identify any supports deemed necessary to aid with recovery after discharge. Finally, more evidence about patients’ experiences recovering from TAD aids in promoting informed consent and shared decision-making for patients, families, and their care providers.    Because cardiovascular nurses are at the forefront of providing crucial education to patients and families about risk factor management, symptom recognition and lifestyle modification, research employing methods inclusive of patient perspectives can be more easily translated into clinical application of nursing practice. Nursing care directly and inadvertently includes patient advocacy, and in this context, TAD patients are confronted with the challenges of chronic disease self-management. Nurses working in cardiovascular health are positioned to assist TEVAR patients and their families as they navigate the perioperative phases. With the trend of decreasing hospital length of stay, post-operative recovery care has been shifted to home (Allvin et al., 2008), and nurses must have adequate knowledge and understanding of recovery from elective TEVAR to help guide and support patients and families in their health transitions.   By adding patient narratives that describe recovery experiences, empirical data can become more meaningful and better explain clinical phenomenon while shifting healthcare providers’ attention back to the patient. Better understanding and inclusion of patients’ experiences can assist when evaluating the significance and utility of research studies. Narrative accounts of elective TEVAR patients can challenge how we conceptualize recovery after TEVAR surgery as well as what evidence is considered most significant for managing care.  7  1.5 Organization of the Dissertation  Following this introductory chapter, the literature review in Chapter 2 will provide thorough background information pertaining to TAD and TEVAR, patient-centered care, and post-operative recovery to show the current state of the evidence. Chapter 3 introduces ID methodology along with the conceptual frameworks and key concepts guiding this study. This is followed by details about the study design, setting, population, recruitment and sampling, data collection and analysis techniques. Ethical considerations and credibility of the study are also presented in Chapter 3.   Chapter 4 provides the results of the clinical review and patient interviews through a series of frequency tables and themes accompanied by patients’ words and an explanation of the themes and sub-themes. Chapter 5 is a discussion of the results, what they mean and the strengths and limitations of this work.  Finally, Chapter 6 provides an overview of the research, answers the research questions and provides as synopsis and reflection of key findings. This is followed by suggestions for future research, implications for nursing and recommendations for clinical care lastly with the conclusion.    8  CHAPTER 2: LITERATURE REVIEW “There is no disease more conducive to clinical  humility than aneurysm of the aorta.”                                                                                       Sir William Osler, 1900.   The literature review in this chapter is organized to provide the reader with essential background information to better understand what is known about the impact of thoracic aortic disease (TAD) on patients and the context surrounding their treatment with TEVAR. This chapter begins with a description of TAD by discussing anatomy and pathophysiology of the aorta followed by information about aortic aneurysms and dissections and their prevalence, pathology and symptomology. Next the chapter includes discussion of aortic surgery, timing to surgery and finally a description of TEVAR and patient selection. The remainder of the chapter includes a review of TEVAR outcomes frequently reported by clinicians, followed by literature about recovery and what we know about recovery from TEVAR. The chapter ends with a discussion about the gap in existing literature related to patients experiences of recovery from elective TEVAR.  2.1  The Aorta and Thoracic Aortic Disease  The aorta is the largest artery in the body and carries blood from the left ventricle to all the distal arteries (Isselbacher, 2006) (see Appendix A, pg. 156). The aorta is a single vessel beginning above the aortic valve that continues into the chest to the aortic arch and level of the brachiocephalic arteries; it runs inferiorly as the descending thoracic aorta past the diaphragm to abdomen and bifurcates at the level of the pelvis into the common iliac arteries (Isselbacher). Bossone et al. (2018), state “it is called ‘the greatest artery’ by the ancients, and it is the ultimate 9  conductance vessel carrying roughly 200 million litres of blood to the body in an average lifetime” (pg. 739).   Thoracic aortic disease (TAD) refers to a wide range of disease states and illness presentations that account for degenerative, structural, genetic, acquired, and traumatic effects to the thoracic aorta (typically from the diaphragm to the aortic root) (Hiratzka et al., 2010). In this study, the patient population have all undergone elective TEVAR for TAD with a presentation of aortic enlargement from a degenerative or genetic thoracic aortic aneurysm (TAA) or a TAA because of a thoracic aortic dissection which is structural and/or genetic in origin.  2.1.1 Thoracic Aortic Aneurysms The most common form of TAD results in the development of a thoracic aneurysm, which  is a permanent, localized dilatation of the aorta greater than 4 cm in diameter (Elefteriades, 2008) or an increase in the diameter of this artery by 50% (Bhandari et al., 2020). This dilatation is a result of a multitude of both genetic and environmental risk factors (Goyal et al., 2017).  Although the aorta is one continuous vessel, the location of the aneurysm determines pathology, risk, and treatment approaches with 60% of TAAs involving the ascending aorta, 40% the descending aorta (specifically 10% the aortic arch, and 10% in the thoraco-abdominal) aorta (Akin et al., 2011). Elective TEVAR is primarily used to treat TAD of the descending and thoraco-abdominal aorta; these aneurysms are typically degenerative in nature and are associated with traditional atherosclerotic risk factors such as advanced age, cigarette smoking, hypertension, and increased cholesterol (Goyal et al., 2017). Whilst this study is not focused on TAD pathology or an evaluation of treatment effectiveness, it is important to have a rudimentary understanding of anatomy and physiology to appreciate the disease and recovery process associated with surgical intervention.  10  Aneurysms of the thoracic aorta are estimated to affect 6-10 /100, 000 people and approximately 20% are associated with a family history (Society for Vascular Surgery, n.d.).  In Canada, a 2018 study by McClure et al. reported the incidence of thoracic aortic aneurysms in the population in Ontario from 2002 – 2014 to be 7.6 /100,000. Unfortunately, determining the true incidence of TAA remains difficult because lethal thoracic aortic dissections are often misdiagnosed as myocardial infarctions (Elefteriades & Farkas, 2010; Goyal et al., 2017). With only about 5% of patients experiencing symptoms, the first symptom for 95% of patients with TAAs is often an aortic emergency (rupture or dissection) or death (Elefteriades & Farkas, 2010; Erbel et al., 2014).  The prevalence of TAAs is considerably lower than coronary artery disease however, etiological factors such as atherosclerotic disease and hypertension are similar in both diseases (Goyal et al., 2017). In some instances, TAAs may also be the result of inflammation, infection, injury, and genetic malformation of aortic tissue. With the disease course of TAD involving a long period of subclinical progression, diagnosis is the result of an incidental finding from diagnostic imaging (such as chest x-rays) for unrelated health concerns in many instances (Elefteriades & Rizzo, 2007; Elefteriades, 2008; Booher & Eagle, 2011).  2.1.2 Thoracic Aortic Dissections  Elefteriades (2008), states “Aortic dissection is one of the most catastrophic acute natural events that can befall a human being” (pp. 176). The incidence of thoracic aortic dissections across the population of Ontario for 2002-2014 was reported by McClure et al. (2018), as 4.6/100,000, while Howard et al. (2013) found an incidence of 6/100,000 in their British study. This potentially lethal aortic event occurs with a tear in the inner most layer (intima) of the aortic wall allowing blood to flow into the middle (medial layer) forcing the layers of the aorta apart 11  and creating a false lumen or channel (Elefteriades, 2008; Wong & Bevis, 2018). The danger associated with an aortic dissection is the obvious diminished vessel wall integrity and risk of rupture, and the risk of organ malperfusion. Perfusion through other arteries (celiac, superior mesenteric artery renal arteries, iliac arteries, aortic arch vessels, or coronary arteries) can be impeded by compression of the true aortic lumen by an enlarged false lumen. Aortic dissections can occur spontaneously and without the patient suspecting that they are having a cardiovascular event. Aortic dissections most commonly occur in the ascending aorta and are referred to as Type A dissections (as per the Stanford Classification system) (Nienaber, 2015). Type A dissections are usually medical emergencies since the proximal ascending aorta is the site of the intimal tear resulting in open false lumen and blood flow starting at the tear and extending the entire length of the aorta (Elefteriades, 2008). Dissections where the intimal tear is in the proximal descending thoracic aorta with a false lumen extending the whole descending and some or all of the abdominal aorta is referred to as a Type B dissection which is less hazardous and does require medical management, but not necessarily emergency surgery. Finally, aortic dissections are termed acute in the first two weeks, and then chronic after this time. With chronic dissections, any part of the dissected aorta may enlarge and form an aneurysm which is at risk of rupturing (Elefteriades).  2.2  Symptoms and Diagnosis  Although most individuals never experience symptoms related to TAD, the most common symptom (associated with both aortic aneurysm and aortic dissection) is retrosternal chest, or interscapular back pain which is often mistaken as symptoms of other cardiovascular conditions such as acute coronary syndrome (Danyi et al., 2011; Jackson & Stewart, 2013; Wong & Bevis, 2018). Asouhidou and Asteri (2009), also mention the challenge of diagnosing an aortic 12  dissection because of the myriad of clinical presentations and the most common symptoms being chest pain, back pain, CHF and syncope. Less common are vague symptoms such as dizziness, weakness, lower back pain or abdominal pain which some patients experience and the general, non-specific nature of these symptoms often results in misdiagnosis (Asouhidou & Asteri).  The patients diagnosed with a TAA can feel an array of emotions such as shock, disbelief, anxiety, fear, and helplessness. Pettersen and Bergbom’s (2010), study describes patients’ experiences of being diagnosed with and treated for an abdominal aortic aneurysm; they found that patients reported difficulty comprehending their asymptomatic but life-threatening condition. From a psychological perspective, the diagnosis of an aortic aneurysm is unique because a single event poses a significant and immediate threat to life and so this diagnosis differs in comparison to other fatal diagnoses which may occur over a period of time (Pettersen & Bergbom). 2.3  Medical Treatment When an aortic aneurysm or dissection is detected, patients are usually referred to a cardiovascular specialist for consultation and management. Booher and Eagle (2011), mention that both the evaluation and management of patients with TAD is complicated and requires specialized knowledge, and expertise. The aim of medical therapy is to prevent a lethal aortic dissection or rupture and so the immediate focus is to decrease the stress on the diseased aortic wall (Danyi et al., 2011; Bossone et al., 2017). This is achieved by meticulous blood pressure and heart rate management with antihypertensive medication, regular diagnostic imaging, and lifestyle modifications such as activity restrictions, smoking cessation and weight control. These management strategies may be unfamiliar for patients who were likely unsuspecting of TAD.   13  2.4 Surgical Intervention In some situations, an acute aortic event warrants emergency life-saving surgical intervention. For others who experience diagnosis in non-urgent circumstances, often incidentally, decisions about appropriate timing for surgery and best surgical approach are based on careful considerations of risks and benefits. All surgical interventions of the thoracic aorta pose the risk of death or significant complications and adverse events that can have a major impact on a patient’s life span, physical functioning, and quality of life. Therefore, the decision to offer surgery to a patient occurs when the risk of rupture exceeds the mortality risks associated with surgery in the context of the patient’s overall life expectancy (Fillinger, 2007; Danyi, et al., 2011). In most instances, elective aortic surgery is offered to those with the greatest chance of recovering without life altering complications (Bavaria et al., 2007).  While it is impossible to predict the timing of a catastrophic or lethal aortic event, national and international expert consensus groups have developed guidelines from pathological and historical data to support healthcare providers (HCPs) in surgical decision making. In Canada, the Canadian Cardiovascular Society’s position statement on the management of thoracic aortic disease (Boodhwani et al., 2014)1, recommends prophylactic, elective, aortic intervention based on the factors of TAD etiology and anatomic region that are tailored to each individual in consideration of their patient-related and disease-related factors. Disease related factors include aortic diameter indexed to body surface area2, the presence of symptoms (such as thoracic pain), aortic expansion rate, uncontrolled hypertension, family history, genetic syndromes, and concomitant cardiac surgery (Coady et al., 2010; Boodhwani et al.). Coady et al.   1 The Canadian Cardiovascular Society, Canadian Society of Cardiac Surgeons and Canadian Society for Vascular     Surgery Joint Position Statement on Open and Endovascular Surgery for Thoracic Aortic Disease (Appoo et al.,      2016)  provides guidelines specific to surgical planning and technique.  2 Maximum aortic diameter/body surface area and less than > 2.75 cm/m2 as per Davies et al. (2006). 14  state “aortic size is perhaps the single most important factor determining time to surgical intervention for non-emergent patients” (pp. 2784). Numerous experts and researchers report that once the aorta is 60 mm (or greater) in diameter, the risk of rupture drastically increases (Davies et al., 2002; Booher & Eagle, 2011). When surgery is delayed, the rates of rupture range from 21% to 74%.  (Pressler & McNamara, 1985; Davies et al., 2002; Elefteriades, 2008).  2.4.1  Conventional Aortic Surgery Prior to the introduction of endovascular aortic surgery, open aortic repair was the only surgical option. In some circumstances it remains the gold standard in surgical intervention for TAD (Coady et al., 2010; Delarosa & Vasquez, 2013). Open surgery for patients with a descending thoracic aneurysm (DTA) and thoraco-abdominal aortic aneurysm (TAAA) is technically difficult, extensive, and can require long surgical and recovery times. In contrast to TEVAR, open repair is performed through a large thoracotomy incision to access the chest cavity and resect the diseased aorta and replace it with a synthetic polyester tube graft (David, 2013; Erbel et al., 2014). It requires left heart cardiopulmonary bypass, aortic cross clamping, hypothermic circulatory arrest, single lung ventilation, and intraoperative monitoring of spinal cord perfusion (David, 2013; Erbel et al., 2014), highlighting the invasiveness of this surgery.  The significant risk of morbidity and mortality associated with open repair and the arduous, and prolonged recovery frequently lasting 4-6 months (Bavaria et al. 2007) previously resulted in patients being deemed ineligible for surgery. Prior to TEVAR, these patients would have been left with medical management and an increasing risk of aortic rupture and death if the aorta continued to expand. Fortunately, thoracic endovascular aortic repair (TEVAR) is a potential surgical option for some patients with TAD in the DTA and TAA. 15  2.4.2  Thoracic Endovascular Aortic Repair (TEVAR) TEVAR is a relatively novel, minimally invasive surgical alternative to treat TAD effecting the DTA and TAAA. To perform TEVAR, small incisions are made into a major artery where catheters and wires are introduced into the aorta under live fluoroscopic (x-ray) viewing to position a specialized stent graft inside the vessel at the area of disease. Like the stenting of coronary arteries, the endovascular graft acts as a conduit. In the case of aortic dissection, the radial force from blood flow causes the endovascular graft to adhere to the walls of the aorta securing it in place and redirecting blood away from the false lumen and back to the true lumen (Mani et al., 2012). For patients with an atherosclerotic aneurysm, the endovascular graft eliminates direct contact between the diseased aortic tissue and the blood’s shearing force which depressurizes the aneurysm sack and reduces the risk of further expansion and rupture. TEVAR is considered minimally invasive because it does not require thoracotomy incisions, cardiopulmonary bypass, aortic cross clamping, and hypothermic circulatory arrest (Khoynezhad et al., 2008) and patients have shorter hospital stays, improved early recovery, and less perioperative morbidity and mortality (Bhamidipati et al. 2011). Evolving from the success of endovascular aortic repair (EVAR) for abdominal aortic aneurysms which was established in 1992, TEVAR was initially used as a rescue intervention for patients with aortic emergencies who were considered unlikely to survive conventional surgery. Since the first TEVAR in 1994, progress in adopting this surgery has been slower than that of EVAR to treat abdominal and infra-renal aortic aneurysms (Ellozy et al., 2003). This is because the thoracic aorta poses several anatomic challenges that have been barriers to the full adaptation and transfer of devices and techniques originally developed from EVAR (Dick et al. 2008).  16  While TEVAR is not the gold standard treatment for all TAD in the descending thoracic aorta and below, it is an emergent and elective surgical option for the treatment of blunt aortic injuries, aortic ruptures, aneurysms, and type B dissections, most often in a higher surgical risk patient population. A small number of patients who have a Type A dissection have been treated with thoracic endovascular grafts however, a high rate of intra-operative and post-operative mortality from stroke has been reported (Bicknell& Powell, 2015).  TEVAR has also advanced to include treatment of more complex TAD such as atherosclerotic disease in the thoraco-abdominal aorta (Greenberg et al., 2010). This location spans both the thoracic and abdominal aorta (above and below the diaphragm) and includes the area of the visceral vessels; the celiac, superior mesenteric, and left and right renal arteries that arise from the abdominal aorta and provide critical blood flow to visceral organs. Endovascular surgery in this area of the aorta requires custom made grafts with fenestrations and/or branches to ensure perfusion of visceral vessels. This lengthy procedure has recently gained in popularity with more endovascular graft options and following good results from specialty aortic centres (Bicknell & Powell, 2015). 2.4.3 Selecting Patients for Elective TEVAR The number of TEVAR surgeries performed since 1994 has risen steadily over the past two decades because of improved technology in imaging, endovascular graft design and practitioner experience. Von Allmen et al., (2013), highlight that improved patient outcomes have resulted in an increase in the number of TEVAR interventions performed, particularly for patients 75 years and older. Beyond advanced age, characteristics of the current TEVAR patient populations include those who are deemed as undesirable candidates for open surgical repair 17  because of significant burden of disease from serious chronic conditions and previous open or endovascular aortic surgery (Gopaldas et al., 2010).  Repair of a thoracic aortic aneurysm or dissection with an endovascular graft is a highly technical intervention. The specialized skills, diagnostic imaging resources and small patient volumes constrains TEVAR to major tertiary care centres. TEVAR requires specialized practitioner skills and meticulous assessment of anatomy is essential for determining patient selection. Patients’ peripheral vascular system must meet stringent anatomic criteria to enable safe vascular access and stent deployment. In British Columbia (at the time of this study), there was one main thoracic aortic specialty team who preformed the majority of TEVAR surgeries at one primary site, and occasionally at the secondary site.  Patient selection for elective TEVAR is ultimately based upon assessments and evaluation of risk versus benefit for the patient. A patient’s overall health status is considered in relation to the surgical and recovery requirements (such as renal function and the ability to clear radiographic contrast agents), individual risk of complications. In the setting of this study, there was no formal screening tools to determine TEVAR eligibility however, the specialty aortic team reviewed and discussed each patient and derived a plan prior to presenting the patient with the option to have elective TEVAR surgery as treatment. What is important to keep in mind though, is that patients who are deemed eligible for TEVAR are faced with the decision of having high risk surgery for a clinically silent disease or refusing surgery and living with the risk of impending rupture and death.    2.5  TEVAR Outcomes  To date the most common complications, adverse events, and survival are frequently reported in the TEVAR literature. These common clinical indicators of morbidity and mortality 18  provide a metric for the processes and outcomes associated with TEVAR and translate into commonly understood mechanisms for evaluating safety, patient care effectiveness, and institutional and individual performance (Myles, 2014).  The clinical indicators and outcomes reported in TEVAR literature may be classified according to when they occur during the post-operative course. They may be referred to as early or late complications or as primary or secondary endpoints. Researchers tend to refer to late complications as problems associated with the endovascular graft positioning or integrity, resulting in complications such as graft migration and or endoleak (Etezadi et al., 2012; Kamman et al., 2016; ). In a recent meta-analysis of endovascular and medical management of aortic dissection, Hossack et al. (2020) described primary outcomes as early and late 30-day mortality and reintervention, and secondary outcomes as stroke, rupture, paraparesis, renal complications, and radiological outcomes (Bavaria et al., 2007; Clough et al., 2014; Biancari et al., 2016).  Regardless of classification, the most commonly reported TEVAR complications in the literature tend to be: CVA, spinal cord injury and death which Bischoff et al. (2016) describes as well documented. In some studies, eearly complications reported after TEVAR include: infection, stroke, paraparesis or paraplegia, cardiac arrhythmias, MI, renal failure, surgical site complications, dissection, bleeding, and dysphagia (Etezadi et al., 2012; Karimi et al., 2012; Merola et al., 2013). Fewer studies report length of ICU stay, discharge disposition, cost analysis, and duration of hospital stay (Arnaoutakis et al., 2015; Gopaldas et al., 2010). Typically, researchers report these outcomes as frequency rates and make comparisons among treatment groups or groups based on pathology.   Significant attention has also focused on reporting survival outcomes at 30-day, 1 year, 5 year and 10-year intervals. Many of these studies compare patients in different treatment groups, 19  such as medical management and or/open aortic surgery versus TEVAR. For example, Zahn et al. (2013), reported worse survival for TEVAR at one year (87% for open vs. 82% for TEVAR) and five years (72% for open vs. 62% for TEVAR). These comparisons can be problematic because patients’ comorbid status often assigns them to a specific treatment group and differences in long-term outcomes could be explained by a combination of case selection, age, and frailty from comorbid conditions. Survival analysis alone provides a narrow view of whether surgery was effective yet is it the most widely used indicator of quality treatment (Eide et al., 2005).    Overall, the TEVAR literature can provide clinicians with important information that undoubtedly can be used in clinical care of patients. The frequency rates of complications and adverse events can help direct clinicians to implement strategies that improve assessment and identification and may possibly aid in prevention. Data about other factors such as length of ICU and hospital stays, and cost analyses can assist with care planning and program development and evaluation. Finally, data that contributes to understanding survival after TEVAR is essential for informing surgical decision-making of patients, their families and the HCPs about whether to undergo elective TEVAR.  2.6  Post-operative Recovery  The concept of post-operative recovery has a multitude of meanings and relevance for patients, family members, and all members of the healthcare team. It is influenced by the unique characteristics of each patient including features of the disease/illness, the individual’s health prior to surgery, the specific surgical approach, the risks associated with surgery, and the patient’s expectations (Forsberg et al., 2017). Post-operative recovery is often divided into overlapping phases with specific physiological changes, factors, and durations that differ. 20  Healthcare providers often view post-operative recovery as the time immediately following surgery, including transfer time between the surgical unit to discharge home (Lee et al., 2014). Patients on the other hand tend to view recovery according to the cessation of symptoms related to when they are able to perform pre-operative activities and when they regain functions over the longer term (Lee et al., 2014; Allvin et al., 2009).  Allvin et al (2008) also mentions that the start of the recovery period is easily recognized by both patients and HCPs however, the final goal of being recovered is more difficult to identify. This may occur if the patient has experienced changes or events during recovery that impair their ability to return to their pre-operative status and level of functioning. In Chapter 1, I introduced Allvin et al.’s (2007) definition of post-operative recovery being used in this study. This definition does not limit post-operative recovery to simply the awakening from general anaesthetic, or the period from the end of surgery to discharge from hospital. Instead, it encompasses the entire time frame to when the patient regains control over their physical, psychological, social, and habitual functions (Allvin et al., 2007). This is an important distinction because current health care trends such as minimally invasive surgery, day surgery, and early discharge from hospital has shifted the setting for recovery from acute care hospitals to the patients’ home. With much of a patient’s recovery now occurring outside of a hospital, healthcare providers’ perceptions and awareness of recovery as a process may be limited. Allvin et al. (2008), found that healthcare providers working in the post-operative context have limited insight into patients’ recovery experiences following discharge from hospital 2.6.1  Dimensions of Recovery According to Allvin et al. (2008) Allvin et al.’s (2007) conceptualization and description of recovery includes viewing recovery as i) an energy requiring process, ii) the return to a state of normality and wholeness, 21  iii) a regaining of control over functions, iv) returning to pre-operative levels of dependence/independence in activities of daily living and lastly, v) regaining an optimal level of well-being. When viewed as a process, recovery becomes more than the cessation of physical symptoms; it includes defining moments and gauges referred to as recovery trajectories (Allvin et al., 2007). There is an overall recovery trajectory based on the assumption that the patient will reach a state of overall health and well-being sometime after surgery, as well as more specific trajectories with specific end points such as cessation of pain and mobility and corresponding with progression and control of bodily functions. Throughout the trajectory, patients will also experience improvements and setbacks referred to as critical junctures (Allvin et al., 2008). Following the development of a definition and subsequent theorizing about post-operative recovery, Allvin et al. (2009) developed a questionnaire  about the progression of post-operative recovery as well as to track the long-term follow up from complications and events that occur during the recovery time. From interview studies with patients (who had undergone gastrointestinal, renal, orthopedic, and gynecological surgeries) and RNs and surgeons, post-operative recovery was conceptualized as having five dimensions: i) physical symptoms, ii) physical functions, iii) psychological, iv) social, and v) activity. These five dimensions are described more extensively in chapter 3 along with how their accompanying items were operationalized for use in this study.  2.6.2 Recovery from Endovascular Surgery In my review of TEVAR literature only two studies were found that incorporated patients’ voices and perspectives of recovery specifically after endovascular surgery. Dubois et al. (2014), conducted focus groups to study outcomes important to patients after EVAR and found functional outcomes, recovery time, energy level, post-operative pain, time to walking 22  normally, and loss of appetite were frequently identified by patients as important. Haakseth et al. (2019), explored the lived experiences of recovery between staged EVAR in patients with thoraco-abdominal aortic aneurysms and they described recovery as overwhelming and hard with tiredness, pain, and complications. The patients in Haakseth et al.’s. study also struggled to get to their pre-surgery self because of the physical and psychological setbacks they had to contend with even years after their operations. These studies highlight the physical and emotional demands and challenges faced by patients who have surgery for aortic disease.   Considering the large volume of research reporting clinical outcomes, the lack of studies examining recovery from TEVAR is surprising and concerning. Also concerning is the minimally invasive surgery (MIS) label attached to TEVAR which can be misleading for patients and healthcare practitioners since MIS is often equated with quicker, and less burdensome recoveries for patients. This misconception may exist if patients and HCPs are unfamiliar with TEVAR and the significance and life-threatening nature of and the extensive comorbid disease affecting patients deemed best suited for TEVAR 2.7  Integrating Patient’s Perspectives in TEVAR Research  Although there is an extensive amount of research about post-operative recovery, much of it is limited to studies that examine the factors associated with clinical outcomes and length of hospitalization after specific surgical procedures (Kehlet & Dahl, 2003). Exploratory studies that include patient experiences are lacking; the academic literature tends to present recovery as an extension of the patient’s illness experience instead of viewing recovery as a distinctive circumstance from a surgical intervention for treatment for the illness (Allvin et al., 2008). Failing to recognize that recovery from surgery is a health challenge, separate from the underlying disease may result in treatment decisions aimed at disease management that inhibit a 23  patient from returning to a satisfactory state of health and well-being. Overall, more evidence regarding postoperative recovery enables healthcare providers to support their patients in regaining their optimal level of health and allows for evaluations of healthcare interventions occurring during the recovery process (Allvin et al., 2009). Theory related to the concept and process of recovery has not specifically focused on the context of elective TEVAR which adds to the considerable gap in understanding of patients’ experiences to regain health after this complex and highly specialized aortic surgery. Without more evidence of patients’ recovery journeys after TEVAR it is challenging to adequately support patients at various stages of their illness. As well, little knowledge of recovery may result in complications being considered and treated as an extension of the patient’s underlying illness experience instead of a consequence of surgery (Allvin et al., 2008).  Overall, more evidence regarding postoperative recovery enables healthcare providers to support their patients in regaining their optimal level of health and allows for evaluations of healthcare interventions occurring during the recovery process (Allvin et al., 2009). Lee et al. (2014) mentions that data to evaluate new operative techniques relies too heavily on the audit measures of LOS, morbidity, mortality and biologic and physiologic parameters which “at best are proxy measures of recovery” (pp. 211). While these indicators provide important information for decision-making at all levels, they are data points devoid of human experience and not always translatable into meaningful actions that drive care. The current limits of TEVAR research where complication and survival rates are reported in isolation of patient  24  experience does not lend themselves to patient-centered3 approaches to care delivery. As well, HCPs are not able to know and appreciate the magnitude of effects complications may have on recovery over the long-term.  To augment evaluation frameworks and address this gap, studies that focus specifically on patients’ experiences of recovery from specialized surgeries such as TEVAR and clinical outcomes studies need to be integrated to shift to a more patient-centered approach to evaluation and care delivery. Therefore, an exploratory study that includes patient experiences is needed to add to the current body of science pertaining to outcomes of elective TEVAR.   2.8  Summary    Thoracic aortic disease is a life-long and unpredictable chronic conditions and TEVAR is a relatively new, specialized and technical approach to treat TAD and decrease the risk of death due to an aortic rupture. As the indications for TEVAR broaden with technological advances, more and more patients will be eligible to undergo elective TEVAR. Currently, we have an abundance of evidence about complications, adverse events, length of stay and survival in the years and months following TEVAR. What is missing is evidence about how patients recover from TEVAR especially when they are discharged home. By incorporating a definition of recovery that addresses multiple dimensions of the recovery experience this study will help to fill that gap and provide evidence to inform care for TEVAR patients that is more patient centered.    3 For this study, patient centered care is the partnership between individuals, families and healthcare     providers that positions patients at the forefront of their health and care, so they have control over their own     choices to make informed decisions (BC Ministry of Health, 2015).   25  CHAPTER 3: METHODS “The research questions that nurses ask set the stage for the work they  will do to ameliorate human distress, to accommodate bodily frailty,  to counter personal vulnerability, and to make meaningful sense of the  indignities that life has in store for our bodies and minds.”                                                                                               Thorne, 2016, pp. 12              The approach, design, strategies, processes, and techniques used for collecting and analyzing data to explore post-operative recovery from TEVAR are described  in this chapter. The chapter begins with a discussion about Interpretive Description (ID) as the approach followed by the conceptual frameworks selected followed by details of the design, methods, setting, population, sample and recruitment of interview participants, ethics, and study protocol. The remainder of this chapter includes a description of how I operationalized the dimensions of recovery to variables for the data collection tool in the clinical review and how the dimensions were used to create questions for the interview guide.  The study adopted an inductive exploratory and descriptive qualitative design to capture two important periods of recovery from different perspectives. The central research question naturally directed me to perform interviews of past TEVAR patients to learn about their experiences, however the in-hospital period was also an important period of recovery to capture because it impacted the longer-term recovery experience of patients. Therefore, including a clinical review of data documented by numerous healthcare professionals who provided care during the in-hospital phase of the participant’s recovery provided an additional unique perspective on the recovery experience. Since the interviews tended to focus on the angle of recovery that occurred after discharge from the perspectives of participants, integrating both the 26  clinical review and interview data enabled a more comprehensive description of the phenomenon.  3.1  Interpretive Description According to Vaismoradi et al. (2013) the common goal of qualitative approaches is to understand phenomenon through the perspectives of those who live it. The goal of this study was to better understand how patients recover from elective TEVAR by hearing their stories, perspectives and narrative accounts of the phenomenon. The many discussions I had with patients before and after elective TEVAR left me unsettled and aware that my capacity to help and prepare patients for recovery was limited because I did not fully understand what was occurring during in the time between discharge and when they were seen in the aortic specialty clinic three months later.  The desire to understand how patients experience recovery and then respond accordingly by coordinating, facilitating and supporting recovery fit with the central tenants of interpretive description (ID). Thorne (2016) states the research questions asked by nurses originate from their critical reflection and acknowledgement of limitations of the current evidence for practice (Thorne et al., 2015).  Interpretive description (ID) methodology is an inductive analytic approach to understand clinical phenomenon and apply its findings (Thorne et al., 1997), and Thorne (2016) states “it is for excavating, illuminating, articulating, and disseminating the kind of knowledge that disciplines with an application mandate tend to need in order to enact their mandate” (pp. 11).  ID was specifically developed to address nurses’ needs for a method of qualitative inquiry to generate practice-ready knowledge without the  rigidity of traditional social sciences methods (Thorne et al., 1997; Thorne, 2016).) Interpretive description’s foundation lies within qualitative 27  inquiries of clinical phenomenon of importance to nurses and allows them to identify themes and patterns within lived experiences to derive information that informs clinical practice (Thorne et al., 2004).  An ID approach is clearly aligned with this exploration of the clinical phenomenon of recovery from elective TEVAR, since my clinical experience is recognized as a source of expertise necessary for the analytical process (Thorne, 2016). Most importantly, ID methodology allowed for the integration of the practical concerns of care, and the asking of real time, clinically focused questions generated from nursing practice (Thorne). The practical applicability of this methodology meant that I was not bound by rigid steps, processes or procedural rules associated with the other more formalised qualitative research methods which granted the freedom to make pragmatic decisions about design and methods to answer the research questions based on my subject expertise and knowledge context. This means I was able to design a study that incorporated clinical review data and interview data to derive a more comprehensive description of recovery.  3.2 Recovery and Care Conceptual Frameworks Two conceptual frameworks were used to enhance my understanding of the concepts and to guide and support decision-making about methods, data collection and analysis in this study. Allvin et al.’s (2009) dimensions of recovery provided the definition of this phenomenon and informed how I operationalized study variables for data collection in the clinical review, and the development of initial questions for the participant interviews.  The British Columbia Patient Centered Care Framework (BC Ministry of Health, 2015) was the second framework that informed this study. With so little known about how patients experience recovery from elective TEVAR, the concept and definition of patient centered care 28  served as standard and constant reminder to keep attention focused on understanding and describing the phenomenon from the perspectives of patients. In the following paragraphs I have provided a more detailed description of each of the frameworks included in this study.  3.2.1 Dimensions of Post-Operative Recovery Numerous definitions of post-operative recovery can be found in the literature but for this study I chose Allvin et al.’s (2009) work because of the attention and weight given to psychological and social well-being as well as physical recovery. Their work to conceptualize and operationalize recovery into specific dimensions focused specifically on the resolution of symptoms, and the return of normal physiological functions required to perform the activities for daily living independently and the importance of patient’s perceiving that they are recovering (Allvin et al., 2007).  The five dimensions of recovery developed by Allvin et al. (2009) are presented in Figure 2. The dimensions include physical functions, physical symptoms, psychological, social and activity. Each dimension has two to five indicators which were developed from the perspectives of both patients and clinicians (nurses and surgeons). This inclusion of clinicians is important in this instance because the effects of general anaesthetic and sedation can exclude patients from fully remembering or understanding the entire recovery experience.  The dimensions of physical symptoms and functions consist of ten items that address physiological functions commonly affected by surgery and which were found to be most concerning for patients (Allvin et al., 2009). These include the physical symptoms of pain, nausea, fatigue, appetite changes and sleeping difficulties. Regular bodily functions impacted by surgical intervention such as gastrointestinal functions, bladder functions, mobilization, muscle 29  weakness and sexual activity are operationalized as items for the physical function dimension (Allvin et al., 2009). Figure 1: Allvin’s et al.’s (2009), Dimensions of Post-operative Recovery   The remaining three dimensions include items to measure aspects of mental well-being, an area often under assessed and prone to being overlooked especially when a patient is struggling with significant physical impairments however, psychological well-being is as important for postoperative recovery as physical well-being. The psychological dimension is associated with items such as anxiety and worry, feeling done, feeling lonely / abandoned, and difficulty with concentrating. The social dimension consists of three items addressing activities, dependence on others, and interest in surroundings and the final dimension of activity has two items of re-establishing everyday life and personal hygiene (Allvin et al., 2009).  30   These dimensions of recovery according to Allvin et al. (2009) were used as patient centered indicators of recovery in this study. The dimensions and items were operationalized into measurable variables for the clinical review and helped to evaluate the paths of recovery experienced by the TEVAR population and represented by clinical indicators. The dimensions were also used when I created the semi-structured interview guide and served as the initial set of questions at the start of the interviews.    3.2.2  The British Columbia Patient Centered Care Framework More than five years ago the British Columbia Ministry of Health released their Patient Centered Care Framework (BC PCCF) (see Appendix B, pg. 157) with the pledge that they would “strive to deliver health care as a service built around the individual, not the provider and administration” (BC Ministry of Health, 2015, pg. 1). After reviewing this framework and definition of PCC that described patients leading their care, having control and choice and in a supportive and equal partnership with HCPs, I couldn’t help but reflect on the vastly different circumstances surrounding TEVAR patients. In the context of this patient population, the complexities of TAD and intricacies associated with TEVAR prevent patients from leading their care, limits their control, and often leaves them with difficult choices in an environment that does not foster a true and equal partnership between HCP and patients. The components of the BC PCCF include self-management, shared and informed decision making, an enhanced experience of healthcare, improved information and understanding, and the advancement of prevention and health promotion activities (BC Ministry of Health, 2015). Knowing the context in which recovery occurs, the underlying chronic illness of TAD, and continued healthcare needs of patients long into recovery, it was clear these components are essential for both patient centered care as well as high quality care for this 31  patient population. Therefore, the BC PCCF informed this study because it reinforced the necessary elements to shift focus from the setting and HCPs back to the patient. Even within the design and methods of this study, having patient centered care as a benchmark reminded me to be flexible, adaptable and to always prioritize the participants’ experience. This resulted in designing and adapting a study protocol that encouraged and supported individuals to tell their stories with ease and in ways most convenient to them.    3.3  Study Design and Setting 3.3.1  Design  The study was designed so data could be collected through a process of clinical record review and individual patient interviews. Patients’ experiences were the central source of data and I had to consider the contextual factors that could impact a patients’ ability to recall and make sense of the events that occurred after surgery. I was confident that participants would likely remember some of their recovery in hospital as well as the recovery they experienced after they were discharged home. However, the incapacitating effects of anaesthesia and the experience of post-operative pain and other events could alter what and how they recalled or were aware of during the early phases of recovery. I also considered the complexity of TEVAR surgery, along with the nuances of care occurring in a busy hospital environment may have gone unnoticed, and or would not be understood by the participants. Therefore, to account for some missing details about recovery from elective TEVAR, I decided to also include data from the clinical records of participants which had been recorded by the healthcare professionals who had cared for them during the initial post-operative recovery period.  The inclusion of clinical record data from the TEVAR patient population, alongside interviews from a smaller group of patients (with more recent experiences of recovery), made 32  this approach somewhat unconventional. However, this allowed for a structured approach to data collection and analysis compatible with ID because it is flexible, non-prescriptive, and allowed me to shape the design and procedures to best answer the research questions. This design fit with logic behind the ID approach which is to produce knowledge applicable to a practice-based discipline such as nursing (Thorne et al., 1997).   The clinical review of participant’s medical records contained important information related to the physiological and clinical details of recovery experienced by the patient and their family while in hospital. These physiological features are essential for understanding, explaining, and describing some of the recovery experiences that were described by patients in the interviews. For example, collecting data about the occurrence of having a hoarse voice after surgery may help explain and account for a patient’s post-operative difficulty achieving good nutritional intake which in turn may impact the broader dimensions of energy levels and physical activity and functioning during the recovery period.  Although the patients who participated in the interviews did represent a variety of experiences, they represented patients who had achieved some degree of recovery where they were well enough to remember and articulate their experiences. Unfortunately, not all elective TEVAR patients reached a level of recovery where it was possible for them to share their experiences in an interview. Some patients who underwent elective TEVAR during the ten-year study period experienced significant and devastating complications while they were in hospital or after discharge. Therefore, the clinical review made it possible to examine different levels of recovery achieved by the TEVAR population in hospital, and the interviews could provide a glimpse of what recovery looked like for some participants after discharge.     33  3.3.2 Study Setting  There are two major Vancouver hospitals where elective and emergency cardiac and vascular surgeries are performed, and these were the sites selected for the study as they were where TEVAR surgeries were performed between 2008-2017.  A specialized aortic team of cardiac surgeons, vascular surgeons and interventional radiologists perform the majority of elective and emergency TEVARs in BC. This is the main site for surgery involving the descending thoracic aorta. Initially, the highest volume centre (where the out-patient aortic specialty clinic is located) was going to be the only site for the study. However, after further consideration and discussion with the research team, I determined that it was essential to include the smaller group of patients who had elective TEVAR at the secondary site because they represented an important group of patients who had atherosclerotic thoraco-abdominal aneurysms (TAAA). Disease in this area requires extensive, complicated, and staged endovascular surgery with custom-made endovascular devices. Failure to include this TAAA group from the secondary site would have resulted in limited data about this important sub-group of patients. Therefore, I made the decision that it was important to identify and include patients who had elective TEVAR (during the study period) at the secondary site in Vancouver. The long-term management of TAD as a chronic disease, occurs at an outpatient specialty aortic clinic supported at the primary site in this study. The clinic is structured with regular staff consisting of an Administrative Assistant, Registered Nurse, Clinical Nurse Specialist, and two cardiac/aortic surgeons. This team provides chronic disease management, and coordination of aortic surgery for individuals with a diagnosis of TAD from across BC. The out-patient aortic 34  clinic was an integral part of the study because the staff there were needed to assist with contacting potential participants via telephone or by addressing and mailing study packages.  3.4  Sample and Recruitment   This study used a non-probability purposive sample of patients who experienced elective TEVAR between 2008 and 2017 in Vancouver, BC. TEVAR has been performed at hospitals with Vancouver Coastal Health (VCH) Authority since 2002. The volume of patients undergoing TEVAR had increased over the past decade due to progress in the treatment of TAD, expertise with the procedure, and improved endovascular devices and delivery techniques. The standardization of processes of care has also evolved with the gradual increases in TEVAR patient volume.  3.4.1 Inclusion and Exclusion Criteria To eliminate inconsistencies and differences in the care that could impact recovery, I included only those patients who had elective TEVAR during the most recent, ten-year period. The time chosen for gathering data was patients who had undergone elective TEVAR surgery between January 1, 2008 to December 31, 2017. To ensure the individuals represented a population of elective TEVAR patients, they were excluded if they had emergency or urgent surgery since these situations can result in a different experience of recovery. For patient needing emergency surgery, the circumstances surround consent are different because the individual is facing an imminently life-threatening situation and they are unable to plan and prepare for the surgery in advance. Further, when TEVAR is performed in urgent or life-threatening situations, this impacts physiological and emotional well-being and may increase patients’ risk for adverse post-operative events and complications.  35  Patients were also excluded from this study if they had an endovascular aortic repair (EVAR) for an abdominal aortic aneurysm (AAA) or if they had a hybrid procedure consisting of open aortic surgery and an endovascular graft during the same operation, as these were considered significantly different clinical procedures. Although there are many intra-operative and post-operative similarities between TEVAR and EVAR, the surgical risks, post-operative complications, and recovery course are different for each surgery. Patients who had hybrid aortic procedures were excluded because an open aortic surgery (of any kind) poses a different magnitude of risk and different post-operative recovery course than endovascular surgery alone. These inclusion and exclusion criteria were kept broad to ensure the largest sample possible for the clinical data review. However, this would be too large a sample for conducting interviews. Also, because people would be more likely to forget details of their experience the longer ago the surgery had happened, I chose to include only those patients who had surgery during the most recent four years to participate in the interview (from January 1, 2014 to December 31, 2017). Finally, non-English speaking patients were excluded from the interviews because there were insufficient funds within the study budget to hire interviewers who spoke other languages or to hire trained medical translators. The inclusion and exclusion criteria for the clinical review and the interviews are presented below in Table 1.   Table 1: Inclusion and Exclusion Criteria             Inclusion Exclusion • Patients who had TEVAR at one of the two Vancouver hospitals (performing cardiovascular surgery) from: January 1, 2008 – Dec 31, 2017. • Patients classified as “emergent” or “urgent in-patient” as indicated on the standard operative report. • Patients who had EVAR for AAA 36  Inclusion Exclusion • Patients whose surgery is indicated as “elective out-patient” or “urgent out-of-hospital” in the standard operative report. • Patients recorded as receiving a thoracic endovascular stent graft as documented on the operative report. • Patient’s whose medical records are available for review. Additional criteria for interview sample • Patients who had TEVAR during January 1, 2014 – December 31, 2017. • Patients willing and able to have a conversation about their post-operative experiences • Patients who had hybrid procedures (open surgery + endovascular grafting)            Additional criteria for interview sample • Non-English speaking  3.4.2  Sample Size Given the novel, and exploratory nature of this study, I aimed to capture the most inclusive sample for the clinical review and participant interviews. Since this study followed a qualitative design, an a-priori calculation and estimate of sample size was not necessary because the intent was not to generalize the experiences of the participants. Instead, the number of participants was considered in the context of the study sampling strategy, purpose, and quality of the information that was obtained (Polit & Beck, 2012). Although the clinical data included elements that are quantifiable, the purpose was to use this information in a descriptive manner and report on the patterns and events occurring during recovery from TEVAR. The quantifiable data in the clinical review was not intended to construct statistical models, compare groups of patients, predict outcomes, or test hypotheses.  37  The sampling strategy for this study consisted of capturing as many patients as possible from the elective TEVAR patient population who met inclusion criteria for the clinical review. This allowed me to identify a sub-group of potential participants for individual interviews. Factors influencing the number of interviews I was able to conduct included finding those patients still alive, and the likelihood they could be located for an interview. With the population of TEVAR patients meeting criteria to participate in the interviews amounting to 43 individuals, I determined that interviewing approximately 15-20 individuals was realistic, obtainable and would provide sufficient data to depict a variety of recovery experiences. Guest et al. (2006) mention that the nature of purposive samples to understand experiences and perceptions among a group results in a degree of homogeneity among the participants and that twelve interviews typically suffices. Couch and McKenzie (2006) also state that analytic, inductive, exploratory studies are best done with smaller samples and less than 20 interviews allows for closer association with the participants and increases validity of the findings because the developing themes fully remain in the researcher’s mind at all stages of the research. Sampling.  The total population of patients who had elective TEVAR surgery at the primary hospital (during the study time frame) was generated for the clinical review by a Data Analyst from the Decision Support4 department. Patients were identified by the analyst who searched the primary hospital’s Patient Care Information System using Canadian Classification of Health Interventions5 (CIHI) codes related to elective TEVAR surgery. The analyst provided  4 Decision Support is a department at the primary site that delivers information and analytical /planning support. 5 CIHI codes used: Repair, thoracic [descending] aorta using percutaneous transluminal approach and   (endovascular) stent with synthetic tissue; Repair, ascending aorta using percutaneous transluminal approach and    (endovascular) stent with synthetic tissue; Repair, arch of aorta using percutaneous transluminal approach and    (endovascular) stent with synthetic tissue    38  the names, medical records number, and surgery dates of patients so their medical record could be retrieved.  Patients who had elective TEVAR at the secondary hospital site were identified by the out-patient aortic specialty clinic’s Medical Director who performed the surgeries. The Administrative Assistant (AA) of the out-patient clinic was given a list of patient names from the Medical Director’s private office records and the AA confirmed the secondary hospital site and then provided the medical record numbers so files could be accessed. This allowed me to examine and determine eligibility of all patients included in the clinical review.   3.4.3 Interview Recruitment  The recruitment process for the clinical reviews and interviews is presented below in Figure 3. Because the clinical review process involved collecting data from medical records, participant recruitment was not required. For the interviews, a purposive sampling strategy was used. The goal was to recruit individuals who had a wide range of recovery experiences to create a comprehensive description of recovery after elective TEVAR from the patient’s perspective.  Once the final list of potential interview participants was compiled based on inclusion/exclusion criteria, it was given to the CTAD AA who examined the electronic medical records of all the potential participants to ascertain the patient’s current status within the clinic. This inspection was to ensure family members of deceased patients were not disturbed during recruitment.  Clinical processes were also used by the CTAD AA to obtain mailing addresses for posting the study recruitment package. This study package consisted of an invitation letter, return postcard and study consent form. This resulted in the mailing of 43 study packages in July 2018. By November, 14 participants had been recruited but only two were female. From the clinical review, approximately 36% of the sample was female which aligns with results of a systematic  39  Figure 2: Recruitment Strategy             review and meta-analysis by Cheng et al. (2010) comparing open surgery and TEVAR where 38% of TEVAR patients were female. With the interview sample having only two women(14.3%), this exposed an under-representation of female participants in the interviews and a need to expand the diversity of the sample. Female TEVAR patients who had not responded to the previous recruitment efforts were telephoned by the CTAD AA. The CTAD AA followed a written script (see Appendix C,  pg. 158), to ensure patients did not feel coerced to participate, but did receive information about the study and the opportunity to participate. These efforts 40  resulted in the addition of two female participants increasing the percentage to 25%, and a final interview sample of 16 participants. 3.5 Ethical Approval   Prior to data collection ethical approval to conduct this study was sought and received from the University of British Columbia Behavioural Research Ethics Board (BREB – Certificate # H17-02566-A002, see Appendix D, pg. 159). Approval to conduct research was also received from the Vancouver Coastal Health and from Providence Health (see Appendices E & F, pg. 160-161). The requirement for consent was waived for individual patients included in the review of retrospective clinical data. All individuals who participated in the interviews were provided with information of the study, assured of confidentiality, and were asked to provide their informed consent by signing the consent form prior to the interview. The interview participants received a copy of the consent form which also indicated their permission to audio record the interview (see Appendix G, pg. 162-164).   3.5.1  Inclusion of Family Members  During the interview process, six of the sixteen interview participants unexpectedly arrived with a family member who they wanted to include in the interview. The invitations occurred without warning or prior discussion. However, I did seek verbal confirmation from the participant to begin the interview with the family member present,  and also sought verbal consent from the family member to participate in the interview and to be tape recorded. Including family members’ narrative accounts yielded additional useful data, since they often played an integral role in supporting and caring for the participant during the recovery period. Therefore, a letter of acknowledgement was sent to the BREB requesting directions to include data from the family members who were present at the interviews. This led to an amendment to 41  the study protocol to include the family members who the patient wished to participate in the interviews. These family member participants all provided consent for their data to be used in the analysis. Any data contributed from family members was transcribed and analyzed with that of the participant. 3.5.2 Confidentiality  To help ensure confidentiality, all the data collection materials for the clinical review and interviews were anonymized with unique numerical participant identification numbers. I also paid careful attention to the calendar dates and times (i.e., date of surgery), since the small number of TEVAR surgeries meant that operating room dates could potentially be identifying information. Therefore, the clinical data collection form included numerical codes for dates and time to ensure participants could not be identified later based on their surgery date. 3.6 Data Collection The timing of the data collection methods and analysis of the clinical record review and interviews was organized to occur concurrently as per Thorne’s (2016) guidance regarding ID methodology. Engaging in data collection and analysis concurrently in an ID study enables “the analytic process of the disciplinary mind” (Thorne, 2016, pg. 109) to continuously explore and expand on the conceptualizations that began to form as soon as the researcher enters the field. Therefore, concurrent data collection and analysis throughout the study strengthens the results while also adding rigor to the study.   The decision to avoid a sequential method of data collection and analysis was purposeful because of concern of introducing confirmation bias to a study with a small number of participants. Completing the clinical review before the interviews could result in pre-conceptions about participants’ experiences and influence the natural story telling during the interviews. 42  Alternately, completion and analysis of the interviews could influence decisions about what data to collect and concentrate on during the clinical review. Therefore, because of concerns regarding bias, I decided to conduct simultaneous data collection and analysis for the clinical review and interviews. 3.7 Operationalizing Allvin et al.’s (2009), Dimensions of Recovery 3.7.1 Interviews Semi-structured interviews were conducted with 16 participants between September 2, 2018 and January 9, 2019. I wanted to hear directly from participants about their recovery experiences, so I interviewed them in-person at a location of their choice (their home or in a private meeting room at the Centre for Thoracic Aortic Disease), or via telephone at their request. Most of the interviews (10/16) were one-on-one; however (as described above in 3.5.1)  in six instances the spouses of the participant unexpectedly attended and participated.  The interview schedule was designed to be flexible with the duration of the interviews lasting approximately 45 minutes to one hour. All the interviews were audio recorded (after obtaining the participants’ permission) and were transcribed verbatim into Microsoft Word documents by an experienced, paid transcriptionist who was aware of research confidentiality procedures. When the transcription of an interview was complete, I reviewed them for accuracy and removed or changed any names to provide anonymity prior to data analysis.  Interviewing ceased after 16 participant interviews were completed and reoccurring themes became evident in the data. The number of interview participants was initially targeted at 15-20 so to ensure completeness, I took the final step of reviewing the notes I had recorded at the end of the interviews which were summarizations of the experience and themes. This review 43  provided an overall sense of the variety of unique experiences in relation to the common themes and allowed me to make a confident decision to end the interview data collection.  The interview guide.  The interviews were semi-structured with ten guiding questions (see Appendix H, pg.165) developed in advance and informed by Allvin et al.’s (2008), dimensions of recovery. The interview guide was designed to be flexible, with additional questions added as necessary to capture the patients’ experiences. To ensure consistency, I conducted all the interviews which also allowed me to adapt and later add additional questions as themes were uncovered that warranted further exploration. Initially, most of the interview questions were centered around understanding the recovery experience of the participant when they had returned home from the hospital. Currently, discharge from hospital and then follow-up at the CTAD clinic with the aortic/TEVAR team can span three or more months so I was focused on trying to understand what was happening in the weeks following discharge in relation to the factors and dimensions of recovery. Table 2 (pg. 44) displays the initial ten, open-ended questions and the corresponding dimension of recovery that I was trying to explore during the interview. Following the first few interviews, two additional concluding questions were added at the end of the interviews as a means for the participant to sum up the key points to take away. These questions were “What would you share with other patients who are awaiting elective TEVAR?” and “What do you want the healthcare team to know about recovery from TEVAR?” Another addition to the interview question guide occurred following the fifth interview when it became apparent that initial TAD diagnosis experience was an important aspect of their experience participants felt compelled to share with me. For some, the diagnosis and planning for elective surgery occurred in quick succession, so capturing the beginning of the experience by asking about diagnosis allowed for important contextual factors and background information to 44  be shared. The question “tell me how your experience with thoracic aortic disease requiring TEVAR all started” was added to the interview guide as the opening question.  Table 2: Interview Questions & Factors and Dimensions of Recovery Recovery Dimension Factor Interview Question Physical Symptoms   Fatigue   Describe your physical activities the first month after your surgery? Describe what you could do when you came home from the hospital? (what did a typical day look like)?  Activity  Re-establishing everyday life  How would you describe life before your elective TEVAR surgery?  What was your daily routine when you returned home after your surgery?  Social  Social activities Dependence on others    Describe your social activities in the first month after your surgery? Physical Functions    Gastrointestinal  Mobilization Muscle weakness  What was your appetite and eating like when you were recovering in the hospital and at home?  Describe what physical activities you could do or could not do when you came home from the hospital?   Psychological   Anxiety & worry Feeling down Feeling lonely Difficulty concentrating  What do you remember about your experience in the hospital after your elective TEVAR operation? What do you remember about your experience being discharged home after surgery? Tell me about your mood and how you felt when you were at home recovering?  3.7.2 The Clinical Review  The data collected for the clinical review came from the medical records of participants and was originally recorded by multiple members of the healthcare team while they provided care to the participants during recovery from TEVAR. To ensure consistency in data collection, I examined every chart and entered the data into the data collection tool (see Appendix I, pg. 166-45  169). A trained research assistant transferred the information from the data collection tool into a Microsoft Excel spreadsheet for analysis.  The clinical review data collection tool.  To answer research question 2a, the clinical review data collection tool included information about the different peri-operative stages which provided the background and context to better understand recovery. The tool had three main sections that captured patients’ journey of care: pre-operative data, intra-operative data, and post-operative data which included information about events and physical and psychological functioning that occurred in the first 10 days after surgery according to Allvin et al.’s (2009), dimensions of recovery. Currently, patients undergoing elective TEVAR follow a standard cardiac surgery care pathway depicting recovery progression during the first five post-operative days and a subsequent target discharge date on POD 5. My experience reporting length of stay for the primary hospital site have shown length of stay to range from six to ten days for TEVAR patients, therefore I included the first 10 post-operative days in the analysis. Ceasing analysis at POD 10 resulting in a representation of the majority of TEVAR patient recovery.   The development of the clinical review data collection tool was informed by three main sources: i) the literature described in Chapter 2 identifying the most common adverse events and complications experienced by TEVAR patients, ii) my familiarity and experience with the patient population and medical records documentation, iii) and Allvin et al.’s (2009), dimensions of post-operative recovery. Collecting, analyzing, and reporting the frequency of post-operative events and complications is important because this information is necessary to help explain the duration and course of recovery to answer research question 2a.  The clinical review data collection tool included the following:  i)  Baseline data: I gathered demographic data (e.g., age, sex, etc.) and information pertaining to the participant’s pre-operative health status (at the time of surgery), health history and surgical history. This information about baseline data about the participants’ health status 46  prior to undergoing TEVAR. Knowledge of baseline health status was important when reviewing the post-operative events and determining whether they were present before surgery, and/or possibly related to TEVAR surgery. The pre-operative health data also helped to explain why participants were not suitable candidates for the gold standard treatment of open aortic surgery and why they were offered elective TEVAR. ii) Significant health conditions: The data collection tool listed numerous cardiovascular or non-cardiovascular related conditions obtained from the documentation of physicians on the anaesthetic record, pre-admission anaesthetic report, or surgical consult letters found in the participant’s hospital medical record. Conditions captured by the data collection tool include cardiomyopathy, myocardial infarction (MI), atrial fibrillation (AF), transient ischemic attack (TIA), cerebral vascular accident (CVA), diabetes (both insulin and non-insulin), chronic obstructive pulmonary disease (COPD), and asthma.   iii) Intra-operative data: Data about the TEVAR surgery and intra-operative events were collected from the operative records completed by the operating room (OR) nurses and surgeons. This data consisted of all surgical procedures undertaken, as well as additional interventions, surgical team composition, type (standard versus a custom, individual specific graft) and number of endovascular grafts used, the use of any cerebral spinal fluid (CSF) drains and intra-operative  neurophysiological monitoring (NIOM) data6. Information about operative events such as loss of NIOM signals, arrhythmias, vessel injury, and transfusion of red blood cells given during surgery were also recorded from the progress notes of the physicians caring for the patient. Collecting data specific to the events during surgery was important since they explained some of the recovery experiences of the participants.    6 Neurophysiological intra-operative monitoring is the use of motor and sensory evoked potentials during the     surgery to assess for possible impairment to spinal cord blood flow.  47   iv) Time variables: Information about time was collected from the medical records to calculate the duration of important clinical events during recovery. These clinical events often reflect the different stages of recovery and time variables allowed for the calculation of average duration related to a clinical event which helped in identifying different rates of recovery. The times included and calculated as duration variables are surgery, anaesthetic, mechanical ventilation, time spent in the cardiac surgery intensive care unit (CSICU), and the overall post-operative length of stay. Most of the duration variables were calculated as hours or days from the operative records, narrative nursing notes, clinical flow sheets and discharge summaries.   v) Post-operative events: Post-operative data included the most common complications that occurred during the post-operative period after TEVAR. These events were reported by physicians in the progress notes section of the medical record, or they were indicated on the patient’s discharge summary. These post-operative events are the conventional clinical outcomes commonly discussed in TEVAR literature and are important to report in this study because these events can significantly impact recovery duration and experiences. The post-operative events were categorized according to neurological, cardiac, respiratory, GU, surgical site, reintervention, fever, transfusion, and then events such as endoleak, dysphagia and hoarseness. Any other complication was recorded in an adverse events section for each post-operative day.   vi) Recovery variables: Informed by Allvin et al.’s (2009), dimensions of recovery I operationalized the factors and created measurable variables. Table 3 (pg. 48) shows the dimension, factor, variable and the source documents. During the process of operationalizing variables, questions arose about the consistency and accuracy of clinician reporting on some source documents because of missing information. In this instance a proxy measures were created to represent the factor(s).                                                                                                                                                                                 48 Table 3: Creating Variables for the Clinical Review  PRN = pro re nata or as needed, MAR = medication administration record  CSICU = cardiac surgery intensive care unit, CSF = cerebral spinal fluid  CVC = central venous catheter, CVA = cerebral vascular accident  Recovery Dimension Factor Description of Variable Source document      Physical Symptoms Pain The prn administration of narcotic analgesia. MAR Narrative nursing notes  Sleeping difficulty  The prn administration of sedative medication at bedtime to assist with sleep. Nausea The prn administration of antiemetic medication to treat post-operative nausea and vomiting.  Fluid balance sheet Narrative nursing notes  Fatigue The administration/transfusion of red blood cells.   Activity   Re-establishing everyday life Duration of time in ICU and in hospital.  • The date and time of transfer from CSICU to the inpatient unit.   • The date the patient was discharged.    Narrative nursing notes Discharge summary Duration of time requiring oxygen   • The date supplemental oxygen was removed.  Vital signs flow sheet  Physical Functions  Gastrointestinal Nutrition intake • The post-operative day the patient consumed and tolerated a regular diet.  • The post-operative day of first bowel movement.  Nursing assessment flow sheet. Narrative nursing notes  Mobilization The post-operative day of independent ambulation.  Narrative nursing notes CSICU flow sheet  Bladder The post-operative day Foley catheter was removed. Nursing assessment flow sheet   Psychological   Delirium    Physician documentation of the presence of delirium in the progress notes and/or the prn administration of agents such as loxapine, haldol, Midazolam or nozinan to control the behaviour associated with confusion and paranoia.  Progress notes MAR  Narrative nursing notes                                                                                                                                                                                  49 3.8  Data Analysis  Data for the clinical review and patient interviews were analyzed through separate concurrent processes to determine the frequency and pattern of post-operative events from the clinical data, and to derive the themes and concepts from the participant interviews. Each analysis provided the data to answer the secondary research question, and when combined I was able to generate a comprehensive description of recovery to answer the primary research question. Below are the details of the steps taken with each source of data beginning with the analysis of the clinical review and following with the analysis of the interviews.  3.8.1 Analysis of The Clinical Review Data  The analysis of the clinical review data began with entry of variables into an Excel for Microsoft 365 (Version 2010) spreadsheet by a research assistant who was familiar with clinical data and whom I trained and supervised in data entry for this study. After the input of the data, I reviewed each case to check for accuracy and made corrections where necessary. When each case was reviewed, the excel file was converted to an IBM Statistical Package for the Social Sciences (SPSS) 25 data file for analysis.  Simple descriptive statistical analysis involving frequency rates and measures of central tendency such as the mean, median, and standard deviation were used to analyze the demographic data, pre-operative health of patients, intra-operative variables, and post-operative events for the study population. Since I was not trying to make predictions about recovery or compare the recovery process between different groups, simple, univariate statistical analysis helped me to identify emergent patterns related to the occurrence of events during recovery which were then used to generate explanations to further explain the themes and concepts derived from the participant interviews. Following a preliminary series of descriptive statistics                                                                                                                                                                                50 for the pre-operative, intra-operative, and post-operative periods, I reviewed the results to detect further errors in data entry and made corrections by referring to the data collection tool for each case. Following corrections, I conducted the analysis again and recorded the results.   The next step involved separating the population by biological sex by using the split file command in SPSS and following the exact analysis used for the population. A full statistical group comparison was not the intent however, it was important to review the findings in consideration of potential sex-based differences. In 2018 The Heart & Stroke Foundation required researchers to collect, analyze and report cardiovascular data by sex to acknowledge the differences between males and females in both presentation and outcomes. With males out numbering females in this population, I wanted to ensure any potential differences in the recovery experiences would be made visible.  After grouping and analyzing by biological sex, the population data was then separated based on TAD pathology (descending thoracic aneurysm, aortic dissection, and thoraco-abdominal aneurysm) again with the split file command and the analysis was repeated. I made the decision to separate the population according to disease pathology because of differences in the TEVAR surgeries that could impact a patient’s length of stay, and their risk for post-operative complications. For example, patients undergoing elective TEVAR surgery to treat a TAAA are at higher risk for decreased perfusion to the spinal cord and gastrointestinal system because of the location of their disease. These patients often require a custom endovascular graft and stenting of visceral vessels which prolongs the operating and anaesthetic time and can result in a higher incidence of post-operative complications. Patients undergoing TEVAR to treat an aortic dissection may require an arch vessel bypass prior to surgery because of the area where they endovascular graft will be anchored. These variations in surgical techniques and procedures                                                                                                                                                                                51 because of TAD pathology may also result in differences in recovery for patients and therefore the analysis also included separating the population according to TAD pathology.  Although the analysis included reducing the population into groups, the analysis at the group level mirrored the analysis performed on the population. The results are presented to show the population and then separation of groups so comparisons could be made within each table. When present, the rate of missing data for the variables was also included in the tables.  3.8.2 Analysis of Participant Interviews  The participant interviews were analyzed using a content analysis to systematically analyze, compare, contrast and categorizing the data and then develop themes and sub themes to illuminate participants’ experiences of recovery (Graneheim & Lundman, 2004; Graneheim et al., 2017; Lindgren et al., 2020). I chose this analytic technique because to my knowledge there were no studies examining recovery from elective TEVAR, and because as a new researcher the structure and flexibility of content analysis allowed me to use an inductive approach to identify and develop both categories and themes to describe and interpret data from the 16 participants I had interviewed. Schreier, (2012) and Vaismoradi et al. (2013), state that content analysis can be used by researchers at the beginning of their careers, when there is a lot of data and where there is no previous evidence.  The process I used to analyze the interview transcripts was conducted manually without the aid of qualitative data analysis software and began with listening to each interview while reviewing the typed transcriptions. The demographic data was annotated so I could describe the interview participants and all personal identifying information was removed from the transcripts to preserve anonymity, and any necessary corrections in the transcription were made.                                                                                                                                                                                 52 The next step involved completely re-reading the transcripts a second time and underlining words, and phrases, and writing initial notes about my thoughts, ideas, and possible meanings (of the underlined content) in the margins. Direct quotations that were memorable or significant in describing an event, feeling or situation were highlighted and transferred to a “quotations” list. This was a form of condensing to shorten the original text and remove words that were not meaningful (Graneheim et al., 2017). Following the second reading, the interviews were summarized by referring to the margin notes, and initial interview impressions recorded immediately after each interview. After summarizing, I created a list of key descriptors. Next, I mapped out the recovery of each participant by compiling data from the interview and organizing it in point form statements under the following headings: Health and surgical history, first aortic event, cardiac and aortic experiences, pre-TEVAR status, month and year of elective TEVAR, post-operative hospital experience, going home, month 1 at home, year 1 at home, and life now. The mapping of recovery phases provided a type of coding frame to help me structure and organize the data (Schreier, 2012). After reviewing the descriptors and recovery maps, I selected ten transcripts to review more in-depth by highlighting differences, contradicting ideas, and defining the underlying ideas, and create categories. In content analysis a category describes a selection of similar codes into one place and describes the content at the manifest level (description) with little interpretation of the meaning (latent level) (Morse, 2008; Schreier, 2012). The ten transcripts were selected based on whether the participant described an event or experience associated with their TAD diagnosis, preparing for TEVAR, post-operative complications and long-term recovery that was different from other participants, or if they had some unique demographic characteristics (i.e., were a                                                                                                                                                                                53 widower, were female, had undergone several aortic surgeries). This decision was made to reduce the data while still ensuring that a variety of experiences were represented.   The last analytic step directly involved reviewing the transcripts once again to expand the recovery maps of an even smaller group of participants by fully describing and elaborating on the statements. The participants selected for this more comprehensive mapping of experience were selected based on: i) sex (to ensure adequate representation of males and females), ii) type of surgery (inclusion of patient with TAAA recovery experience), iii) recovery success (whether the person expressed that they had recovered for TEVAR) and iv) delayed or missed diagnosis experiences. Using these criteria, six participants were selected for more in-depth recovery mapping.    Next, I went back to the list of key descriptors from the interview summaries, and reduced them from 140 to 57, consolidating them into four broad categories: i) information: understanding my illness and the plan, ii) psychological impact of TAD diagnosis, iii) support and relationships, and iv) physical. Moving back to the recovery maps, I created three categories based on the recovery process: diagnosis experience, early TEVAR recovery, and living my life after TEVAR and began interpreting by searching for the underlying meanings (Graneheim & Lundman, 2004; Schreier, 2012; Graneheim et al. 2017). Themes, or connections with meaning between several categories (as defined by Schreier, 2012) were created by defining, explaining, describing, and relating to established theories and literature about recovery and TEVAR. As well, at this point I returned to the collection of quotations to integrate participants voices in the analysis and demonstrate an understanding of their lived experience through their narratives (Schreier, 2012).                                                                                                                                                                                 54  The development of the main themes was an iterative process occurring over several months and involved moving between the recovery maps, descriptors, and direct quotations identified and collected during the initial review of the transcripts. Through a process of combining, connecting, reducing, explaining, and theorizing, eventually three main themes with nine sub-themes were created to describe recovery from elective TEVAR. These themes and subthemes were defined, described, and supported with the direct quotations that has been collected in the review of the interview transcripts to make the voices of the participants heard (Schreier, 2012).   3.9 Credibility  Credibility refers to the criteria used to evaluate the quality, integrity, and confidence  within this research stemming from the question to the methodological decisions to data collection and analysis and the reporting of findings (Polit & Beck, 2008). One important aspect of credibility in this study is my transparency and clear positioning as a researcher who has worked clinically in this field and with patients. Thorne (2016) mentions that qualitative findings can only be considered as meaningful evidence within a discipline if they are generated by those who have credibly located themselves. Therefore, it was important for me to acknowledge not only my potential biases, but also the contextual familiarity I had with this patient group and the circumstances surrounding elective TEVAR.   To further address credibility, I have used Thorne’s  (2016) four evaluation criteria or general principles to refer to when assessing the credibility of an ID study: epistemological integrity, representative credibility, analytic logic, interpretive authority. Below I have outlined how in this study I have addressed credibility according to these principles.                                                                                                                                                                                   55 3.9.1 Epistemological Integrity  Thorne (2016) states epistemological integrity is clear and justifiable reasoning and explanations that connects assumptions about the nature of knowledge and the methodological decisions made throughout the research process. In this study, the lack of evidence about how patients recover from elective TEVAR meant this study needed to be centered around patients and focused on their perspectives and experiences in an exploratory manner. Therefore, hearing directly from a variety of  patients through one-to-one interviews was essential. As well, recognition that aspects of their TEVAR surgery left the without awareness of their full recovery stories was a concern and so additional data collection methods were integrated as well as the inclusion of family members (when invited by the participant) to provide clarification and details of events when needed. Overall, understanding the experience of patients and capturing their stories of recovery were central to the design and methodological decision-making apparent throughout this study.    3.9.2 Representative Credibility Thorne (2016) describes representative credibility as the consistency to which theoretical claims that are made and the ways in which the phenomenon studied is sampled. To account for representative credibility in this study, I used a purposive sampling strategy and was able to recruit and interview sixteen participants. This allowed for the greater likelihood of hearing an array of patient experiences of recovery to accurately describe the phenomenon as much as possible. As well, in the context of this study I recognized the inherent value of using data from patients’ medical records to better understand and explain recovery from the initial start of the experience immediately following surgery. This use of multiple sources of data or triangulation                                                                                                                                                                                56 helps to ensure accuracy of results (Polit & Beck, 2008) because of the recognition of knowledge beyond one angle (Thorne, 2016).  3.9.3 Analytic Logic Analytic logic is the evidence of the inductive reasoning from the initial mental structure to the interpretations and knowledge claims (Thorne, 2016). In this study, I presented the current context and understanding of recovery and TEVAR surgical outcomes through the literature review in Chapter 2, and then I introduced the conceptual frameworks used to guide data collection (Allvin et al.’s 2009 dimensions of recovery, and the BC PCC framework, 2015), and described the processes for analyzing the interview data in Chapter 3.  The analysis of the interview data demonstrated my decision making as I moved back and forth between the raw data and theorizing and conceptualizing about the descriptors and key themes. The recovery mapping steps, integration of as many direct quotations from participants and the frequent discussions with my supervisory team to discuss and explain the structure of the themes and sub-themes as it evolved depicts my decision making and analytic logic in this study.  3.9.4 Interpretive Authority The principle of interpretive authority refers to the trustworthiness of the research findings through the revelations of the researchers biases and how they acknowledge and attend to them to ensure the interpretations arise from the data (Thorne, 2016). In this study, I clearly acknowledge the potential impact of my previous clinical position and  I was cognizant of the impact of my knowledge, position, and experience as potential biases that might be brought to this work. My previous experience as a CNS for this patient population has provided a lot of anecdotal evidence about the recovery experienced by some patients after their elective TEVAR. Therefore, it was essential that I exercise reflexive strategies such as journaling to draw attention                                                                                                                                                                                57 to, consider, and review these biases regularly and transparently throughout the analysis phase. Johnson, Adkins and Chauvin (2020) mention that reflexivity and acknowledgement of bias is critical to the credibility and trustworthiness of qualitative data collection and analysis.   The reflexive processes used began with the writing field notes after the participant interviews to document the context of the interview, reflect on the questioning, my initial impressions, the setting, circumstances, interactions, and details that stood out during the interview. I also freely expressed my opinions about what I thought was happening and made a point of indicating whether I thought my opinion was based on my knowledge of the situation as a clinician or was from the interview in my role as researcher.  During the analysis, I listened to the interview audio files and reviewing the transcriptions for each participant several times and journaling my thoughts and interpretations each time they were reviewed. I also wrote journal entries during the qualitative analysis and used this journal to question and challenge the interpretations I made when developing the themes and demonstrate interpretive authority.  3.10  Summary   In this chapter the methodological approach was detailed and an explanation of the conceptual frameworks of Allvin’s dimensions of recovery and the BC Patient Centered Care framework which informed it, including definitions of concepts, and the operationalizing of variables. The methodology of interpretive description was the scaffolding which supported the design of the study protocol and its implementation. This chapter also provided detailed information about the sampling strategies and ethical considerations and how data was collected and analyzed along with the principles of credibility to help the reader to gain confidence in the process when moving on to the study findings in the next chapter.                                                                                                                                                                                   58 CHAPTER 4: STUDY FINDINGS “Aortic dissection is one of the most catastrophic acute  natural events that can befall a human being” Elefteriades (2008, pp. 176)  The findings from the clinical review and participant interviews are presented in this chapter. To begin, a summary of TEVAR patients included in this study is presented. After the description of the population and participants, a brief explanation about missing data is provided and then demographic data about the total TEVAR population with specific details about the interview participants are presented.  The findings comprise the remainder of this chapter beginning with a presentation of the three major themes and subthemes from the participant interviews. These themes are described and supported with the inclusion of direct quotations from the participants. The clinical review results consisting of peri-procedural details, duration of post-operative events, length of stay, discharge disposition, post-operative complications, and trends in the dimensions of recovery occurring post-operative day 1 to 8 are integrated to further explain and support the interview findings. The results from the review are displayed in a series of frequency tables showing the rate for the population. The findings are further separated  according to sex, and TAD pathology and descriptions of the clinical review data accompany each table. These descriptions highlight possible differences between groups based on the rudimentary univariate analysis performed and if possible, differences were expected, supported by the current literature, and if they were unexpected, if they pointed to the need for further exploration.  This chapter concludes with a summary of the important findings.                                                                                                                                                                                59 4.1  The Elective TEVAR Population   The total number of elective TEVAR cases performed at the two sites during the designated study period was 122. They were identified by the Decision Support analyst (107 patients) and aortic surgeon (15 patients) to be screened for inclusion. Table 4 (pg. 60) shows the number of individual cases from each site, and details pertaining to exclusion of patients. Although 122 patients were initially identified, the medical records of three patients were not available for screening. Hence a total of 119 patient medical records were screened for inclusion criteria, and 13 (10.7%) patients were excluded because they did not undergo elective surgery, or their disease was in the abdominal aorta and they had EVAR. The final size of the study population was 106 patients, consisting of 93 (87.7%)  from the primary aortic site and 13 (12.3%) from the secondary aortic site.   Table 4: Identification of Elective TEVAR Patients Included in the Clinical Review  Primary site N =107 (%) Secondary site N =15 All N =122 (%) Cases identified by DS analyst Cases identified by aortic surgeon 107 0 0 15  107 (87.7%) 15 (12.3%) Medical records unavailable   3  0 3 (2.5%)  Reviewed  but excluded Emergency/ urgent TEVAR Coarctation repair EVAR surgery Hybrid surgery Identification error TOTAL 4 2 3 2 0 11 0 1 0 0 1 2 4 3 3 2 1 13 (10.7%)  Cases included  N = 93   N =13  N = 106  Note. Percentages rounded to first decimal place; may not add to 100% because of rounding.  Primary site = Vancouver General Hospital;  Secondary site = St. Paul’s Hospital  DS analyst = Decisions Support analyst                                                                                                                                                                                  60 4.2  Missing Data    Analysis of data for the clinical review relied on accurate and complete documentation in patient medical records. Since the analysis of this data consisted of just frequency rates, I did not implement any strategies to contend with missing data points, and instead simply acknowledged where data were missing. I speculate that the missing data occurred randomly and was the result of incomplete or lack of documentation in the participant’s medical record by various care providers. The variables with the most missing data included: smoking status, aortic diameter, number of blood pressure medications, ASA score, CSF drain presence, and the use of neurological intra-operative spinal cord monitoring during surgery. Patient’s numerical pain rating scores was frequently missing which resulted in narcotic analgesia administration being used instead to provide insight about patient’s post-operative pain levels.   4.3  Recruitment for Participant Interviews   Figure 3 shows the identification of the elective TEVAR population, and the recruitment of interview participants. In total, 43 elective TEVAR patients (from the population) were contacted. In total, 5 (11.6%) declined participation, 1 (2.3%) was unreachable, 19 (44.2%) did   not respond, and 18 (41.9%) expressed interest in participating resulting in a final sample of 16 (37.2%) participants for the interviews.                                                                                                                                                                                  61 Figure 3: Population for Clinical Review and Recruitment for Interviews 4.4  Demographic Results 4.4.1 Describing the Elective TEVAR Population  The clinical review of the elective TEVAR population consisted of 106 individuals with 68 (64.2%) males, and 38 (35.8%) females. Table 5 (pg. 63), shows the demographic information consisting of the mean age, grouping by age, sex, marital status, distance of their home to the TEVAR hospital, and TAD pathology for the total population of TEVAR patients. The group based on pathology differed slightly in size with patients who had a descending thoracic aortic                                                                                                                                                                                62 aneurysm7 (DTA) making up the largest group at approximately 38%, the thoracic aortic dissection group consisted of approximately 35% of patients, and the thoraco-abdominal aortic aneurysm (TAAA) group made up approximately 26% of the population. The patient ages in the dissection, DTA and TAAA groups ranged from 35 to 88 years and when analyzed by 10-year intervals, the results showed slightly more than 70% of the population were 70 years or older.    The mean age based on sex and TAD pathology showed female patients were slightly older than males and, patients with an aortic dissection were younger than the DTA and TAAA groups by approximately 10 years. Marital status and home location showed two thirds of the patients were married, and approximately 60% lived less than 100 km from the TEVAR hospital.  Table 5: Demographic Characteristics of Clinical Review Participants  All  N (%) Sex  n (%) Pathology of TAD  n (%)  Characteristic  106 (100%)   Male 68 (64.2%)  Female 38 (35.8%) Aortic Dissection 37 (34.9%)  DTA  41 (38.7%)  TAAA 28 (26.4%)   Age   Mean (SD±) Median                                    Min                              Max  73.3 (9.2) 74.535 88  72.1(9.9) 74 35 88  75.2 (7.4) 75 57 88  66.2 (9.5) 68 35 80  77.4 (6.9) 77 57 88  75.9 (6.4) 77.5 63 86   Age group (years)  < 49 50 –59  60 – 69 70 – 79  80 + 2 (1.9%) 5 (4.7%) 23 (21.7%) 48 (45.3%) 28 (26.4%) 2 (2.9%) 4 (5.9%) 17 (25%) 29 (42.6%) 16 (23.5%) 0 1 (2.6%) 6 (15.8%) 19 (50%) 12 (31.6%) 2 (5.4%) 4 (10.8%) 16 (43.2%) 14 (37.8%) 1 (2.7%) 0 1 (2.4%) 3 (7.3%) 21 (51.2%) 16 (39%) 0 0 4 (14.3%) 13 (46.4%) 11 (39.3%)   Sex Male Female    32 (86.5%) 5 (13.5%) 25 (61%) 16 (39%) 11 (39.3%) 17 (60.7%)    Marital status   missing   Single Married Widowed Divorced  1 (0.9%) 14 (13.2%) 71 (67%) 13 (12.3%) 7 (6.6%)  0 9 (13.2%) 55 (80.9%) 2 (2.9%) 2 (2.9%)  1 (2.6%) 5 (13.2%) 16 (42.1%) 11 (28.9%) 5 (13.2%)  0 6 (16.2%) 28 (75.7%) 2 (5.4%) 1 (2.7%)  0 5 (12.2%) 27 (65.9%) 7 (17.1%) 2 (4.9%)  1 (3.6%) 3 (10.7%) 16 (57.1%) 4 (14.3%) 4 (14.3%)    7 For this study the descending thoracic aneurysm group includes patients with atherosclerotic aneurysms that are       not the result of an aortic dissection.                                                                                                                                                                                63  All  N (%) Sex  n (%) Pathology of TAD  n (%)  Distance home to hospital   Missing     0-99 km 100 – 499km 500+km    1 (.9%) 63 (59.4%) 24 (22.6%) 18 (17%)   0 42 (61.8%) 17 (25%) 9 (13.2%)  1 (2.6%) 21 (55.3%) 7 (18.4%) 9 (23.7%)  0 23 (62.2%) 9 (24.3%) 5 (13.5%)  0 28 (68.3%) 6 (14.6%) 7 (17.1%)  1 (3.6%) 12 (42.9%) 9 (32.1%) 6 (21.4%)  TAD Pathology Dissection DTA TAAA 37 (34.9%) 41 (38.7%) 28 (26.4%) 32 (47%) 25 (36.8%) 11 (16.2%) 5 (13.5%) 16 (39%) 17 (44.7%)     Note. Percentages rounded to first decimal place; may not add to 100% because of rounding.  TAD = Thoracic aortic disease, DTA = Descending thoracic aneurysm, TAAA = thoraco-abdominal aneurysm    Age = patients age at time of surgery as per admitting records Marital status was obtained from the patient’s demographic information sheet, which is asked on admission.  Distance to hospital was calculated based on the distance between their home residence and the hospital they had their surgery.  TAD pathology was based on physician documentation of key words “dissection” “thoracoabdominal” or “descending” aneurysm.  4.4.2 Demographic Data of Interview Participants  Demographic information to describe the interview participants is presented below in Table 6 (pg. 64). Of the 16 participants interviewed, 75% were male, and 25% were female. Their ages (at the time of their interview) in 10-year categories show 5 (31.3%) participants 60 – 69 years, 7 (43.8%) were 70 - 79 years, and 4 (25%) were 80 - 89 years. At the time of elective TEVAR almost 90% of the participants were married and retired from work. Their medical aortic history showed 12 (75%) participants had an aortic dissection and five (31.3%) required emergency surgery, and half had previously undergone aortic surgery. Table 6: Demographic Information for Interview Participants n = 16 Variable n (%)   Age group (years)  60 – 69 70 – 79 80 – 89  5 (31.3%) 7 (43.8%) 4 (25%)  Sex Male Female  12 (75%) 4 (25%)   Marital status at time of surgery   Married Widowed missing 14 (87.5%) 1 (6.3%) 1 (6.3%)                                                                                                                                                                                64 n = 16 Variable n (%)   Employment at time of surgery Full time Part time Retired  1 (6.3%) 1 (6.3%) 14 (87.5%) History of Aortic Dissection No Yes  4 (25%) 12 (75%) History of emergency surgery for aortic dissection  No Yes 11 (68.8%) 5 (31.3%)  Elective aortic surgery before TEVAR No Yes 8 (50%) 8 (50%)                     Note. Percentages rounded to first decimal place; may not add to 100% because of rounding.  Although not initially intended, six spouses (of the participants) also participated in the interviews. These spouses were all wives and provided important information about the recovery experience of their husbands who had undergone elective TEVAR. Data from the wives were included in the analysis only if it clarified, amplified, or added to the patients’ recovery stories. Demographic data was not collected from the spouses of the TEVAR patients who participated in the interviews.  4.5  Major Interview Themes  Analysis of the interview data revealed three major themes describing recovery from elective TEVAR: i) A serious, frightening diagnosis, ii) Vulnerability of living with an obscure, complex, illness and iii) Continuous uncertainty on an unrelenting journey. The structure of the themes and sub themes are presented in Table 7 (pg. 66).                                                                                                                                                                                   65 Table 7: Structure of Major Interview Themes A SERIOUS, FRIGHTENING DIAGNOSIS VULNERABILITY OF LIVING WITH AN OBSCURE, COMPLEX ILLNESS CONTINUOUS UNCERTAINTY ON AN UNRELENTING JOURNEY  Something is Wrong • Suffering an acute aortic dissection • It’s serious, everyone is concerned • An unexpected finding  Sudden Identity Change  Living with Multiple Losses       I Don’t Understand What is Happening • Trying to understand my treatment • Isolation and suffering in silence  Healthcare Providers Don’t Understand my Illness • Misdiagnosed  Relying on, and Trusting Specialists • Gratitude • Disconnected after surgery  Initial Relief • Temporary respite  Unexpected Complications • In-hospital complications • Complications after discharge • Persistent side effects and psychological recovery  Never Ending Health Maintenance • Feeling frail   4.5.1 A Serious, Frightening, Diagnosis  Early into the interviews, participants made it apparent that their experiences living with thoracic aortic disease (TAD) were integral to understanding their recovery from elective TEVAR. Although TEVAR was a significant and consequential life event, it was one component of their journey to adapt and live with a chronic, cardiovascular disease. Therefore, the first major theme addresses the situation participants found themselves in when they received a diagnosis of TAD. Specifically, A Serious, Frightening Diagnosis was derived from descriptions of events related to suddenly being told they had a disease affecting the main artery in their body, causing the tissues of the vessel to be weakened, (and possibly enlarged) putting them at risk of sudden death if the artery ruptured. The seriousness of this disease became apparent when participants were admitted to the critical care units of hospitals, or when their care was                                                                                                                                                                                66 transferred to a cardiac or vascular surgeon at the specialty aortic centre. The uncertainty of this diagnosis resulted in fear, anxiety and worry about prognosis, life-expectancy and how to live with TAD.   The diagnosis experience appears to frame the participants’ recovery. This was especially true for those who had an acute aortic dissection as one participant stated:   The [TEVAR] surgery itself hasn’t affected my life. I mean, my life is different than it   used to be, but that’s from the aortic dissection. That’s when it kind of started. But the   surgery was just in there, and I don’t think it had any significant effect in terms of my   further activities. It all goes back to the aortic dissection.  Patients’ narrative accounts of their diagnosis experiences pointed to shifts in their identity, routine, functioning, and perceptions of health even prior to TEVAR. Several participants used the term trauma or traumatic to describe the impact of finding out they had TAD, and then trying to live with this new reality: “there’s a lot of psychological trauma associated with these – with - if I can use the word injuries, and I still have that.” This trauma was in relation to the distressing memories participants had about their symptoms, hospitalizations, and on-going struggles to manage a new, unfamiliar and life-threatening condition. Something is wrong. This sub-theme introduces different patterns of experience related to receiving a diagnosis of TAD either because of an acute aortic dissection, or because a thoracic aortic aneurysm was found unexpectedly. Three-quarters of the interview participants experienced an acute aortic dissection; the others were diagnosed because of an incidental finding of a thoracic aneurysm. Regardless of the events leading to diagnosis, all participants quickly became aware of the seriousness of their health problem. Alarming symptoms, and/or a change in demeanor of their HCPs reinforced the precariousness of their condition.                                                                                                                                                                                 67 Suffering an acute aortic dissection. For the participants who experienced an acute aortic dissection, the sudden onset of severe pain made some of them stop what they were doing and seek emergency medical attention. Participants had vivid memories of the events leading to diagnosis and they provided specific details about their physical symptoms. They described a sudden onset of chest, back, or shoulder pain while doing normal, everyday activities such as in a meeting, working at their desk, swimming, running errands, painting artwork, or lying in bed. This severe pain was described with terms such as “explosion”, “tearing” “like someone stabbed me” and “more pain than I’ve ever been in, in my life.” One participant stated “it felt like there was something tearing inside my chest. It was a weird sensation. I’ve never felt that before. Never want to feel it again.” The sudden, severe pain, its location, and worsening symptoms were frightening, and a cause for concern, as one participant stated, “I thought I was having a heart attack,” - a clear message that something was significantly wrong.  It’s serious, everyone is concerned. Participants stressed the serious, and life-threatening nature of their condition by describing how they witnessed a sudden change in the demeanor of the healthcare team once the diagnosis of acute aortic dissection had been confirmed. One participant remembered:  I’m in the hospital, CT scan, 2012. They do the scan. All of a sudden, all hell breaks   loose. They run out. ‘You’re getting admitted.’ And they throw a little—you know the   things they put in for the IV in the hand? … And I’m lying there, … and everybody’s   going crazy, and the woman comes in, says, ‘I’m going to give you some morphine.’ I   said, ‘I’m not in pain.’ So, she gives it to me anyways. And I’m like, ‘What the hell is   going on here?’ So, we get a doctor that comes in, and he’s trying to tell me that I have   an aortic aneurysm with dissection.                                                                                                                                                                                 68 Other participants described similar scenarios with HCPs abruptly ushering them into stretchers, taking them for tests, and suddenly staying close to their bedsides. This change in the HCPs’ actions and behaviours made participants more fearful because it verified the seriousness of their diagnosis.   The participants described the information they (and their families) received regarding  prognosis. A participant’s spouse described how they were told to call other family members because the chances of survival were low. Another participant and their spouse described  overhearing staff comments, questioning treatment decisions: “my daughter heard them say, ‘I  can’t believe he’s even going to touch that.” Others heard discussions by the healthcare team  related to chances of survival. One participant described “when it first happened, I was in  emergency, I mean ICU… I overheard them talking. They didn’t know if I was going to come  out of it.”  In another instance a participant was told their prognosis was not good and treatment  options would be discussed at a future date if they survived.  An unexpected finding. Four participants did not specify a history of, or symptoms indicative of an acute aortic dissection, or that they required emergency surgery. Based on the medical information they did share; I speculate that their aortic disease was found incidentally as a result of imaging for other health concerns. Although their diagnosis experiences did not involve an emergency event, receiving a TAD diagnosis would have also evoked fear and uncertainty for these participants. They too described the surprise of having a (potentially) life-threatening cardiovascular disease that dramatically changed their health status: “ I’ve always been an athletic person all my life, you see? I couldn’t understand, well, why is my aorta bad, you know.”                                                                                                                                                                                69  Sudden identity change. This sub-theme addresses the change in self-perception and identity that participants experienced after receiving a diagnosis of TAD. Like other chronic diseases, this diagnosis can change an individual’s view of their health. Prior to finding out they had TAD, many of the participants described never having been sick, never having surgery, and some had never been a patient in hospital: “no medication. None. Hadn’t been in a hospital since I was six” said one participant. The role of patient was unfamiliar, and they described a sudden shift in their thinking about their health: “it’s just amazing, how quick you can be healthy and not healthy, just in the blink of an eye.” Another participant explained that getting the diagnosis resulted in a loss of their identity because they were told they could no longer compete in sports: “I go to see the doctor and he tells me that’s it, you can’t race anymore, you’re done. Well, I just lost everything.”   Having to take medication was another major factor that influenced participants’ perception of being unhealthy following their TAD diagnosis. Patients were prescribed various anti-hypertensive agents, most commonly beta-adrenergic blockers to control blood pressure. Unfortunately, the side effects left some participants feeling unwell with weakness, fatigue and dizziness that affected their physical functioning. One participant stated they were taking five different medications, another described difficulty ambulating: “I ended up with heavy doses of medicine for my heart… I would have about three chairs in the house that, if I was on my own, then I could make it the other chair and sit before I fell.” Needing to take medication intensified participant’s perceptions of being unwell.  Living with multiple losses.  A new diagnosis of TAD resulted in participants experiencing many forms of loss. Loss of independence and having to rely on others because of new physical limitations was mentioned by several participants:                                                                                                                                                                                70  Before I had surgery, I was very cautious because I couldn’t do much, and I had  anxiety, and I had depression and fear… I was not allowed to pick up anything over 10 pounds, and being very independent, all of a sudden, I could not do this, I could  not do that, and I could not do other things.  Some described a loss of control and loss of security “like I was walking on eggshells” after diagnosis while they waited to see the aortic team or waited for surgery.   Participants also described a loss of their regular routines. Prior to diagnosis they were involved in a variety of activities and roles such as: taking university courses, working full time, or part time, golfing regularly, travelling, and in one instance training for triathlons. After diagnosis, many gave up, or strictly limited activities and tried to adjust and find new routines:   Just basically trying to establish a routine and just to keep yourself sane because it   was—when it happened, I was still working, and it was nice. But after that, I didn’t have   a choice. I had to come up with something. And she said get a hobby, so I had to establish   a routine and stick with it to keep some sanity. Loss here also includes significant life changes that affected these patients, such as taking early retirement and downsizing to a smaller home. One participant who experienced an aortic dissection and required emergency surgery stated: “due to the operation, it changed my life, I mean, my lifestyle. I lost my job, and I had to sell my house. It was a bigger house, had to move to here. And there’s still life, you know.”   Pre-operative health status. The pre-operative health status of patients (in the population) before they underwent elective TEVAR is further described by the clinical review data. The comorbidities and risk factors for TAD were analyzed and are displayed in Table 8 and 9 (pg. 72 - 73). In total, less than 10% of this population had no evidence of any pre-operative comorbidities listed in Table 8.                                                                                                                                                                                  71 Table 8: Frequency of Pre-Operative Co-Morbidities by Sex and TAD Pathology  All N (%) Sex n (%) Pathology of TAD n (%)   106 (100%)   Male 68 (64.2%)  Female 38 (35.8%) Aortic Dissection 37 (34.9%)  DTA 41 (38.7%)  TAAA 28 (26.4%)   No co-morbidities   8 (7.5%)  6 (8.8%)  2 (5.3%)  5 (13.55)  1 (2.4%)  2 (7.15)  Neurological      CVA TIA   13 (12.3%) 7 (6.6%)  9 (13.2%) 2 (2.9%)  4 (10.5%) 5 (13.2%)   2 (5.4%) 1 (2.7%)  8 (19.5%) 4 (9.8%)  3 (10.7%) 2 (7.1%) Respiratory    COPD   48 (45.3%)  29 (42.6%)  19 (50%)  17 (45.9%)  17 (41.5%)  14 (50%)   Cardiac disease  MI A-Fib Pacemaker  Heart Failure  9 (8.5%) 14 (13.2%) 3 (2.8%) 6 (5.7%) 4 (5.9%) 8 (11.8%) 3 (4.4%) 3 (4.4%) 5 (13.2%) 6 (15.8%) 0 3 (7.9%) 2 (5.4%) 7 (18.9%) 0 2 (5.4%) 4 (9.8%) 4 (9.8%) 3 (7.3%) 2 (4.9%) 3 (10.7%) 3 (10.7%) 0 2 (7.1%)  Diabetes Type 2 Diabetes    Type 1 Diabetes              11 (10.4%) 4 (3.8%) 8 (11.8%) 3 (4.4%) 3 (7.9%) 1 (2.6%) 3 (8.1%) 3 (8.1%) 3 (7.3%) 1 (2.4%) 5 (17.9%) 0  Renal  GFR 30 – 44 Dialysis  22 (20.8%) 1 (1%) 14 (20.6%) 1 (1.5%) 8 (21.1%) 0 7 (18.9%) 1 (2.7%) 10 (24.4%) 0 5 (17.9%) 0  Body mass index  missing                                 Mean (SD±) Median Min                             Max 027.9 (5.16) 27.7 16.944 0 28.4 (4.99) 28.4 19.0 44.0 0 27.1 (5.41) 26.6 16.9 39.6 0 27.4 (4.51) 27.4 19.0 38.0 0 28.9 (5.93) 28.4 16.9 44.0 0 27.3 (4.70) 27.3 17.3 37.3  Note. Percentages rounded to first decimal place; may not add to 100% because of rounding. TAD = Thoracic aortic disease, DTA = Descending thoracic aneurysm, TAAA = thoraco-abdominal CVA = Cerebral vascular accident; TIA = Transient ischemic attack Smoking status is self reported by the patient. Current smoker = has smoked within 30 days of surgery; Ex-smoker = patient stopped smoking more than 30 days before surgery. Smoking status at the time of surgery was found in the Nursing Admission Assessment record or pre-anaesthetic record.  GFR = Glomerular filtration rate  Dialysis: participant requiring dialysis before surgery. BMI = Body mass index was calculated from participant’s height and weight based on the BMI calculation used by the Heart & Stroke Foundation of Canada.                                                                                                                                                                                 72 Table 9: Aortic Risk Factors & Surgical History by Sex and Pathology   All n (%) Sex n (%) Pathology of TAD n (%)    106 (100%)   Male 68 (64.2%)  Female 38 (35.8%) Aortic Dissection 37 (34.9%)  DTA 41 (38.7%)  TAAA 28 (26.4%)  Smoking  Missing Never smoked Current smoker Ex-smoker                                                                                                2 (1.9%) 31 (29.2%) 16 (15.1%) 57 (53.8%) 0 23 (33.8%) 10 (14.7%) 35 (51.5%) 2 (5.3%) 8 (21.1) 6 (15.8%) 22 (57.9%) 0 14 (37.8%) 4 (10.8%) 19 (51.4%)  0 11 (26.8%) 6 (14.6%) 24 (58.5%)  0 8 (28.6%) 6 (21.4%) 14 (50%)  Pre-op aortic  diameter (mm) n = 102  missing Mean (SD±) Median Min Max  4 59.3 (8.09) 59.5 40 80  2 59.1 (8.51) 60 40 80  2 59.7 (7.35) 58 45 75  0 55.2 (7.32) 56 40 71  3 61.3 (8.13) 60 40 75  1 62.3 (6.86) 60 52 80  Number of anti-hypertensive drugs used  missing 0                        1 2 3  +4   2 (1.9%) 6 (5.7%)22 (20.8%) 40 (37.7%) 26 (24.5%) 10 (9.4%)  2 6 (8.8%) 11 (16.2%) 27 (39.7%) 16 (23.5%) 6 (8.9%)  0 0 11 (28.9%) 13 (34.2%) 10 (26.3%) 4 (10.5%)  1 1 (2.7%) 5 (13.5%) 11 (29.7%) 11 (29.7%) 8 (21.6%)  0 5 (12.2%) 11 (26.8%) 17 (41.5%) 7 (17.1%) 1 (2.4%)  0  0 6 (21.4%) 12 (42.9%) 8 (28.6%) 1 (3.6%)  Cardiovascular surgical history   No surgery CABG Hx Open Aortic sx   TEVAR EVAR Hx endovascular sx  53 (50%) 9 (8.5%) 42 (39.6%)  5 (14.2%) 3 (2.8%) 18 (17%)  30 (44.1%) 5 (7.4%) 29 (42.6%)  11 (16.2%) 3 (4.4%) 14 (20.6%)  23 (60.5%) 4 (10.5%) 13 (34.2%)  4 (10.5%) 0 4 (10.5%)  20 (54.1%) 1 (2.7%) 14 (37.8%)  5 (13.5%) 0 5 (13.5%)  18 (43.9%) 3 (7.3%) 17 (41.5%)  8 (19.5%) 3 (7.3%) 11 (26.8%)  15 (53.6%)  5 (17.9%) 11 (39.3%)  2 (7.1%) 0 2 (7.1%)  Others surgical history    Surgery for Cancer Orthopedic surgery   21 (19.8%) 13 (12.3%)  13 (19.1%) 6 (8.8%)  8 (21.1%) 7 (18.4%)  7 (18.9%) 4 (10.8%)  7 (17.1%) 6 (14.6%)  7 (25%) 3 (10.7%) Note. Percentages rounded to first decimal place; may not add to 100% because of rounding.  TAD = Thoracic aortic disease, DTA = Descending thoracic aneurysm, TAAA = thoraco-abdominal Smoking status: an ex-smoker was defined as not having smoked a cigarette for 30 days or more CABG = coronary artery bypass grafting. AAA = abdominal aortic aneurysm. EVAR = endovascular aortic repair                                                                                                                                                                               73  The most common pre-operative co-morbidities were COPD (n = 48, 45.3%), renal impairment (n = 22, 20.8%), atrial fibrillation (n = 14, 13.2%), and type 2 diabetes (n=11, 10.4%). The average body mass index (BMI) of the population was in the overweight range (Mean = 27.9, SD = 5.16). When analyzed by sex, females had a higher rate of TIA, (n = 5, 13.2%), COPD (n =19, 50%), and MI (n = 5, 13.2%). When analyzed by pathology, patients with DTA had a higher rate of CVA (n = 8, 19.5%), patients with aortic dissection had a higher rate of atrial fibrillation (n = 7, 18.9%), and patients with TAAA had a higher rate of type 2 diabetes (n = 5, 17.9%).  The pre-operative aortic risk factors and surgical histories were analyzed and showed more than half of patients (n =75, 53.8%) were ex-smokers, and the average mean aneurysm size was 59.3 mm (SD = 8.09), and 40 (37.7%) patients required more than two anti-hypertensive agents. Surgical history showed half of the patients had no previous history of aortic or cardiac surgeries, and for those who did, the most common aortic surgery was open abdominal aortic aneurysm resection followed by 14.2% of patients having had previous TEVAR surgery. Lastly, the two most common non-cardiovascular surgeries indicated on patient histories showed 20% had previous surgery for Cancer and 10% had previous orthopedic surgery.  4.5.2  Vulnerability and an Obscure, Complex, Chronic Illness   The second major theme pertains to the vulnerability of being diagnosed with the obscure, complex, chronic illness of TAD. This uncommon and unfamiliar diagnosis compounded by a specialized and novel surgery leaves patient at an increased risk of misdiagnosis, disease mismanagement, and difficulty in taking an active role in their care. Since this patient population is small, individuals with TAD lack the benefits of support, comfort, and knowledge sharing from peers.                                                                                                                                                                                 74  Unlike coronary artery disease, TAD has not received the same attention from extensive public education campaigns that provide knowledge and promote awareness. This has resulted in a knowledge deficit in the general public (and by health professionals) regarding symptoms, risk factors, and treatment options. The obscurity and complexity of TAD resulted in increased vulnerability which was evident when participants described experiences of misdiagnosis, difficulty fully understanding their disease and treatment, and having to rely on, and trust specialists.  I don’t understand what is happening. This sub-theme explains the idea that it is difficult to understand the diagnosis of TAD and TEVAR surgery. TEVAR is still a fairly new, and very specialized surgical intervention. Patients and some providers are unfamiliar with the surgery as well as with recovery. Undergoing TEVAR meant that at times participants were isolated and had to endure a potentially complicated recovery where support was only available from one specialty team.    Trying to understand my treatment. The complexity associated with aortic anatomy and physiology makes understanding TAD and treatment with TEVAR very difficult for patients. During the interviews it was apparent that some participants continued to have knowledge deficits about their disease, or the treatment decisions:   And I guess maybe, the CT scan might have shown something. So, my family doctor   probably contacted a vascular surgeon because I never knew. All of a sudden, I   received a phone call saying, ‘You have an appointment you know? So, I went and   talked to him, you know, because hey, I want to make sure that I am healthy. So, he   was talking to me about, I guess, the aorta or whatever.  Participants also expressed bewilderment regarding the time period between diagnosis and TEVAR surgery. This was especially evident for those who experienced an acute aortic                                                                                                                                                                                75 dissection and were treated in a hospital that did not perform aortic surgery. One experience was described as follows:  They didn’t know whether they were going to operate or not… then they decided to send   me home with a heavy blood pressure medication, and schedule surgery once I had time   to heal slightly, or—I didn’t understand the whole concept. Other participants were told they needed immediate surgery to treat their acute dissection, but they were not transferred to the aortic centre. Instead, once stabilized, they were discharged home and elective TEVAR surgery occurred more than two years later. Participant’s confusion about these circumstances was still evident when they said:   They said there were going to ship me out, but I don’t know what happened. And they   just left me and I didn’t have the surgery till last year, last… They said it was very   serious and life threatening, but yet, they kept me in (small town) I don’t understand why   they didn’t ship me out when they said they were going to.  Although the standard treatment for patients with uncomplicated type B aortic dissections is to delay surgery and focus on blood pressure control, and regular imaging, in this instance the treatment plan was not effectively explained. Instead, the participant received conflicting information, which was confusing and upsetting, and led them to question whether they had received adequate care.   Isolation and suffering in silence. Due to the rarity of TAD and being eligible to undergo elective TEVAR, participants could not relate well to patients with other forms of cardiovascular disease. The isolation associated with being a TAD patient was underscored when a participant stated: “I am not a typical heart patient.”                                                                                                                                                                                76  Participants also revealed experiencing new, persistent, and unexplainable symptoms they did not receive treatment for. One participant stated that no one was able to provide any help or rationale for the persistent pain they were experiencing after TEVAR: “ they said it will heal, go home, gave me morphine, and take morphine 4 hours or whenever you need it.” This individual suffered uncontrollable pain for a significant amount of time. Without any knowledge of what recovery from TEVAR should involve, participants struggled to adjust, and live with debilitating side effects hoping they would eventually subside. An encounter with a primary care provider was described as follows: “when I went in and I again was complaining about my—the pain, she said, ‘You will never be as good as you were before surgery.’”  Healthcare providers don’t understand my illness. This sub-theme is based on the perceptions of several participants that their primary care providers lacked knowledge and experience of treating TAD. Several individuals described being misdiagnosed which resulted in a delay in their receiving of appropriate treatment. A misdiagnosis also led to uncertainty about whether their local care providers could safely, and effectively treat and manage their TAD.    Misdiagnosed. There are numerous factors influencing whether a diagnosis of TAD is made in an accurate, and timely manner. This was evident for those in the study who experienced an aortic dissection who were initially misdiagnosed. These participants did not go to the emergency department but instead sought help at their family doctor’s office or walk-in clinic; possibly this was because they experienced more vague symptoms such as side pain, shoulder pain, lower back pain, weakness, and fatigue which they attributed to other illness or injuries.    The individuals misdiagnosed were told they had: the flu, indigestion, chest infection, heart failure, and renal colic. The delayed diagnosis of an acute aortic dissection resulted in delayed treatment. One participant spent more than two years feeling unwell (after an abrupt                                                                                                                                                                                77 event of chest pain), and openly questioned whether their life would be different by stating: “I think in 2009, had they done the CT scan and found the tab and identified it right then, I don’t know how different my life would have been.” Another person described staying overnight in a rural hospital awaiting a CT scan and that when performed the next morning, they were immediately transferred by helicopter to the critical care unit of an urban centre.  They thought that I had kidney stones or something, and the CT department was                  closed  for the night, so I had to spend the night. And they did a CT scan in the   morning, and they were quite surprised. I guess it was quite an extensive tear.   And they called a helicopter and aired me out.  These examples illustrate the vulnerability of TAD patients who are at significant risk of misdiagnosis when they present with general and vague symptoms to non-emergency settings.  A misdiagnosis and delay in appropriate care put the individual at risk for lethal consequences and resulted in a loss of trust in the HCPs. Receiving information from the specialist that conflicted with what they received from the generalist HCPs further reinforced fear and mistrust and participants questioned whether adequate treatment was available in their communities. This was expressed specifically when one participant stated, “our hospital here, I find they don’t really know how to treat my type of condition.”  Relying on and trusting specialists. The participants had to rely on and trust the aortic team specialists to provide information and care following diagnosis of TAD. When diagnosed with TAD, cardiologists, cardiac surgeons, and vascular surgeons are consulted to provide the appropriate medical and surgical treatments. The highly specialized, resource intensive, and small volume of patients appropriate for TEVAR results in a limited number of acute care centers and personnel with the knowledge and skills to effectively care for this patient population. Being confronted with an unfamiliar, chronic illness, and then undergoing a complex                                                                                                                                                                                78 surgical intervention such as TEVAR, increases vulnerability because access, information, and care is limited.    Gratitude. Participants were aware of the uniqueness of their condition and conveyed gratitude and appreciation for the care they received from the aortic team: “I look back now, and I realize that I had complete confidence in these three professionals and was just grateful that they were there to help me.” This gratitude was directed to all members of the aortic care team. Another participant expressed appreciation by stating “And the hospital itself, I thought the care was just incredible. Like, it was just—the people were just so nice, and you know, I felt very secure.” These sentiments were also shared a participant’s spouse who expressed gratitude:   I found that the care at the hospital and the consideration of the staff there was always   fantastic, and as you know, and it’s not being the patient, but being the spouse, I   always felt that my—more than welcome, and I really appreciated the attitude of the staff.   There was so much love and care on those wards.  Disconnected after surgery. Reliance on the specialist aortic team resulted in participants experiencing frustration and unease once their TEVAR surgeries were complete. Specifically, they mentioned less contact and communication with the aortic specialty team. One participant stated “you feel so comfortable being looked at that all of a sudden, when you’re sort of better... Like, it’s sort of like leaving home for that first time. Do they still know about me? Do they care?”  Participants also described frustration when they were unable to get test results. One participant stated: “I want to follow my progress and any developments along the way as closely as I can…It seemed just like pulling teeth, trying to find out what the results of the last scan were.” Although surveillance imaging was occurring, participants had to rely on the aortic                                                                                                                                                                                79 specialty team to review and then communicate the findings. One participant described their experience as follows: “so now after the surgery, and I had a number of scans since the surgery. Like I had the last one a few months ago, the third one, and I didn’t hear anything from anybody about it.” This lack of follow-up and communication was difficult for the participants and impacted their sense of security and support. One participant described how they addressed their lack of information by leveraging personal relationships with physician friends and asking them to interpret test results:   I can eventually get the answers, but I got to go through a lot of steps, right? I go to my  GP, I got to get a printout or report. I got to then send it to my friends to look at, and then they got to still think. You know, that’s fine. I like to have their opinion, but they’re not the experts in this field, you know?  Such alternatives strategies were often described as necessary to get information and this participant explained the physician’s response after they requested an appointment following a regular CT scan.     He must have told me five times, ‘Part of your recovery program, what we do is I’m   going to order tests for you on a somewhat regular basis. But please, you don’t have to   come and see me every time I order a test for you.’ Which is difficult for me as a patient,   because I want to know. Good, bad, yes, no, whatever it is, I want to know.  Another participant mentioned the lack of coordination of tests and follow up appointments to get results. They travelled a great distance from their home for an MRI but were not able to meet with the aortic team in person once the test was completed.    For quite a number of the appointments, it seemed like I would go down for the MRI and   then there would be a visit with the doctor the same day, a little bit later in the day, and I   would get a little bit of a, you know, layman’s rundown on what was going on there. But   those—that kind of coordination doesn’t seem to have been possible the last few years.                                                                                                                                                                                 80  Having to rely on the specialty aortic team increased the vulnerability of participants.  Although they expressed a tremendous amount of gratitude, the participants described being disconnected once their surgeries were complete and they were discharged home.  Peri-procedural details.  The peri-procedural details from the clinical review help to further explain the findings from the interview and support the theme of Vulnerability and an Obscure, Complex, Chronic Illness. The peri-procedural details describing elective TEVAR are presented in Table 10 (pg. 82). Most patients had an ASA score of IV, 8 (n = 74, 69.8%) which was consistent across the population regardless of sex or  TAD pathology. The mean duration of surgery for the population was 4 hours and 14 minutes (SD = 2.0), but when analyzed by pathology, TEVAR for a TAAA had the longest operative time (Mean = 5:46, SD = 2.0). The duration of surgical time is increased if arch vessel surgery is required and 49 (46.2%) patients required an arch vessel procedure such as a bypass or transposition prior to TEVAR. The type of endovascular graft in this population showed most patients had TEVAR with a standard endovascular graft (n =77, 72.6%), compared to 29 (27.4%) patients who required a custom graft. The last peri-procedure variables showed 72 (67.9%) patients had NIOM, and 83 (78.3%) of patients had a CSF drain inserted prior to TEVAR.   8 ASA IV:  severe, life threatening, systemic disease (Daabiss, 2011).                                                                                                                                                                                81 Table 10:  Peri-procedural Details of Elective TEVAR by Pathology of TAD  All N (%) Sex n (%) Pathology of TAD n (%)   106 (100%)   Male 68 (64.2%)  Female 38 (35.8%) Aortic Dissection 37 (34.9%)  DTA 41 (38.7%)  TAAA 28 (26.4%)   ASA score  missing II III IV   4 1 (0.9%) 27 (25.5%) 74 (69.8%)   4 1 (1.5%) 17 (25%) 46 (67.6%)  0 0 10 (26.3%) 28 (73.7%)  2 1 (2.7%) 9 (24.3%) 35 (67.6%)  2 0 14 (34.1%) 25 (61%)  0 0 4 (14.3%) 24 (85.7%)  Duration of surgery  (hr: min)   Mean (SD±) Median Min Max   4:14 (2:0) 4:05 0:56 10:09  4:04 (1:5) 4:07 0:56 7:50  4:32 (2:1) 4:01 1:07 10:09  3:56 (1:4) 4:07 1:08 7:14  3:27 (1:4) 3:12 0:56 7:12  5:46 (2:0) 5:50 1:54 10:09   Arch vessel procedures  Yes  bypass  transposition bypass & trans    N = 49 49 (46.2%) 32 (65.3%) 12(24.5%) 5 (10.2%)  N = 36 36 (73.5%) 23 (63.9%) 8 (22.2%) 5 (13.9%)  N = 13 13 (26.5%) 9 (69.2%) 4 (30.8%) 0  N=23 23 (62.2%) 10 (27%) 9 (24.3%) 4 (10.8%)  N=18 18 (43.9%) 15 (36.6%) 2 (4.9%) 1(2.4%)  N= 8 8 (28.6%) 7 (25%) 1 (3.6%) 0   Endovascular graft  Standard  Custom    77 (72.6%) 29 (27.4)  55 (80.9%) 13 (19.1%)  22 (57.9%) 16 (42.1%)  33 (89.2%) 4 (10.8%)  36 (87.7%) 5(12.2%)  8 (28.6%) 20 (71.4%)  Paraplegia prevention Missing NIOM CSF drain  2 72 (67.9%) 83 (78.3%) 2 47 (69.1%) 52 (76.5%) 0 25 (65.8%) 31 (81.6.3%)  0 30 (81.1%) 31 (83.8%) 2 26 (63.4%) 25 (61%) 0 16 (57.1%) 27 (96.4%) Note. Percentages rounded to first decimal place; may not add to 100% because of rounding. TAD = Thoracic aortic disease, DTA = Descending thoracic aneurysm, TAAA = thoraco-abdominal ASA score =  American society of anaesthesiologists  Duration of surgery was calculated in hours and minutes from the surgery start time to surgery stop NIOM = neurophysiological intraoperative monitoring  CSF = cerebrospinal fluid                                                                                                                                                                                82 4.5.3 Continuous Uncertainty on an Unrelenting Journey  The third major theme relates to the uncertainty of recovery and the unrelenting, never-ending journey that patients noted they endured when they had TAD and underwent elective TEVAR. Participants described their journeys as being marked by unexpected complications, finding a brief sense of respite and normality, followed by a realization that having TAD and undergoing TEVAR resulted in being in a state of never-ending health maintenance. The health maintenance consisted of regular imaging, blood pressure monitoring, medication adjustment, and the possibility of needing additional interventions. The experiences described by the participants showed that even after TEVAR, they lived in a state of continuous uncertainty, appointments and health related tasks.  Initial relief. This sub-theme represents the feelings of some participants during the initial post-operative period. They stated, “I am glad to be alive” and “basically happy to be alive. Happy to be alive and essentially back to normal”. Despite a few individuals stating: “I felt like I was run over by a truck”, several participants denied experiencing post-operative complications and stated that they returned to their pre-operative functioning within a few weeks of surgery.   A good recovery was attributed to the minimally invasive nature of TEVAR by some who also described feeling lucky to have had endovascular surgery as an option. “I’m glad they didn’t have to open me up” said one participant who had an extensive history of aortic surgery. This participant was amazed at how much easier recovery from TEVAR was compared to open aortic surgery. They stated: “just 5 days in the hospital, that’s all. And I don’t feel that feel they did an operation. I don’t see any big scar or anything”. Others mentioned having groin incisions instead of chest incisions: “I just took a little time to adjust, but it wasn’t that bad…because the                                                                                                                                                                                83 surgery, the kind of surgery… through the little holes and that’s it, you know? So, you don’t have a big scar to watch out for.” In this example the extent and location of the incision was believed to be a key factor in their good recovery.    Temporary respite. A straightforward, uneventful recovery provided a period of respite from the worry and anxiety of living with TAD. One participant stated: “I was so happy because when I had my, you know that was about 3 years, they said just don’t do anything. I had the dissection of my aorta and then I was Okay. Now it’s fixed. Happy you know.” This quote points to some participants putting their lives on hold before they underwent elective TEVAR. Another participant described how they felt while waiting for surgery: “before I had surgery, I was very cautious because I couldn’t do much, and I had anxiety, and I had depression and fear.” When asked about after surgery they stated: “I was happy to be alive… I’d made it through surgery, and I had made it through a strange hospital.” Overall, they had overcome a significant hurdle and the recovery period may have been viewed as a time of respite, and an opportunity to regain control over their health.  Unexpected complications. The complexity of TEVAR results in patients experiencing unexpected and unanticipated complications during surgery or recovery. Unfortunately, recovery from elective TEVAR was more challenging for those who experienced complications (while in hospital or at home) and these challenges varied in duration from weeks to months, and in some instances even years. These complications primarily had a physical component, but some participants also described psychological effects.   In-hospital complications. The complications participants experienced in hospital included stroke, a new diagnosis of atrial fibrillation, laryngeal nerve injury (resulting in hoarseness from vocal cord paralysis), headaches and groin site problems. These complications                                                                                                                                                                                84 were associated with TEVAR surgery and in some instances, the effects continued after discharge. In this group, two participants stated they suffered a stroke. One participant described:   I was told that that it was not enough – not enough blood was- when they had all the   tubes going everything, and they -not enough blood was being pumped to my brain, so I   had a stroke… I kept asking for a mirror because I didn’t feel right, and when I got the   mirror, my left side of my face was hanging. Another participant described: “I was on one side of the wall and I couldn’t get across the other side of the wall. This all happened, of course, in my head, but it was a very discomfort—uncomfortable night”   Developing atrial fibrillation in hospital after TEVAR was another major complication. Atrial fibrillation became a chronic condition for this individual. The experience of having atrial fibrillation while recovering from TEVAR was described as:    In the last operation, having the atrial fibrillation was a surprise to me… I scared   somebody, I was sleeping one night during the recovery, and I heard the alarm go off. It   was three o’clock at morning. I heard the alarm go off in the hallways, bang, bang, bang,   and they ran down the hallway to my room. I said, ‘What happened? You know, what   was the matter?’ It was the heartbeat had stopped, I guess, long enough for them to get   the alarm that there was something wrong with my heart. Well, it’s still there, but I’m on   Warfarin now, and that’s just to prevent any stroke.  Developing atrial fibrillation while recovering from TEVAR would have likely prolonged hospital length of stay.   Laryngeal nerve injury was another significant complication and occurred in some participants who required arch vessel surgery prior to TEVAR surgery. Those with laryngeal injury described how the hoarseness they experienced affected their ability to communicate, and how they were treated by others. One participant said “I’ve always had such a loud, deep,                                                                                                                                                                                85 booming voice that it was really kind of sobering to actually have this quiet, little voice, and to people… it’s amazing how people talk to you different when you speak differently.”  Participants who suffered this injury were concerned they would not regain their full voice and all required treatment by Ear, Nose and Throat specialists.  Headaches were another post-operative event experienced by some participants. One spouse recalled: “You had that headache and that—do you remember? You said, ‘I just want to die’… you had that killer headache.” The participant went on to tell me that despite medication, the headache pain remained uncontrolled for several days. Another participant also described a migraine and related it to the CSF drain:  The migraines started a day after. So, I think what is was is that the spinal fluid pressure   was going up, down, up, down, up down… so I had that for about two to three days, I   think… And I was sick with them too, like throwing up sick. This nausea and vomiting with the headache also dramatically impacted their ability to eat, drink, and mobilize.     Groin site hematomas was another complication that occurred while patients were in hospital. Groin site hematomas were described as uncomfortable when walking and sitting. A patient explained “3 days after the surgery… when they stood me up, I had a hematoma let go on my left side, and my whole left side just filled up with blood.” They went on to explain how they had an ultrasound to ensure the artery was not actively bleeding.  Another participant described discomfort associated with their groin incision:   I got some really nice scars in the groin here. But like I said, that was the tough part, the   stitching and the bleeding and the bruising… Just getting comfortable sitting because   where the incisions were, you couldn’t—you’d have to sit or recline a little bit because it   would bruise and it would bleed.                                                                                                                                                                                86 Although groin incision problems did not seem to interfere with length of stay, a groin incision site problem impacted ambulation and healing after surgery.  Complications after discharge. Unexpected complications appearing after discharge home that caught individuals off guard and were perceived as setbacks were mentioned by the participants. Dealing with these complications at home was described as more challenging because support from the aortic care team was not easily accessible.   Some of the complications that occurred after discharge resulted in re-hospitalizations or additional interventions. The most profound examples of unexpected, at-home complications involved one participant who developed a pseudoaneurysm9 and another who developed an infection. The participant who developed the pseudoaneurysm suffered more than two months and their return to pre-operative functioning was dramatically impacted. Below is an excerpt from their description of this experience.   Well, the first 2 weeks, I felt great. And after two weeks, I started to hurt so much in the  chest… we went back to the hospital. And they did CAT scan and they said, ‘Oh, you   have a false aneurysm.’ So, I was in the hospital for 3, 4 days …They said it will heal go   home, gave me morphine… So, I went home, hoping that I get better. Got worse, got   worse, got worse. I couldn’t sleep anymore. I couldn’t eat anymore… After 9 weeks, they   did an MRI... And a week after the MRI, it got so bad. It hurt so I was crying. I couldn’t   stand it anymore. So, we went back in, and then in Emergency room, the doctors came…  they said, ‘Okay, we found out that you—the stent is leaking on the top and on the   bottom. So, we will put some coils… you go home in two days, we call you, and do that.  9 A pseudoaneurysm (or false aneurysm) is a collection of blood between the media and adventitia, the two     outermost layers of the aorta.                                                                                                                                                                                87 This individual described having an uneventful hospital stay and good recovery during the first two weeks after discharge. The development of a pseudoaneurysm impacted all aspects of their recovery such as eating, sleeping and activity, and they required an additional aortic intervention.   Another person described developing complications a few weeks after discharge and requiring hospitalization. This experience was described as follows:   I ended up back in the hospital…So when I got to the hospital, of course they   do blood tests and everything, and I had an, you know, like, extreme high count on my   liver. Like, they were very concerned about my liver, and they—of course they did the   CT scan and other blood tests, and I had some sort of infection that they couldn’t figure   out what it was, but they had me on antibiotics. I spent quite a bit of time in that hospital.   It was almost two weeks I was in the hospital… I had a temperature constantly of 102 to   103…I would go to bed, and I’d wake up, two in the morning, and I’d be soaked, and that   went on for weeks…They were quite concerned about the liver, and they did an   ultrasound and the liver was fine.  This was another example of a significant complication resulting in a return to hospital and impact to recovery and the return to pre-operative activities.    Persistent side effects and psychological recovery. When describing their experiences of recovering, participants stressed the importance of psychological recovery. They described how progressing, improving, and regaining the pre-operative level of functioning was crucial to their psychological well-being. They also described how persistent neurological symptoms and fatigue impacted their psychological recovery and led some to feeling depressed about the lack of progression or improving.   Interestingly, two participants described cognitive effects that lasted several years after TEVAR: “I felt terrible for almost 2 years and you know, lack of stamina, you know, foggy, foggy cognition. My vision was blurry, one eye I could hardly see out of.” This also posed                                                                                                                                                                                88 difficulty with physical activities, reading, and memory for this individual. A different participant described difficulty with memory by stating: “I found a difference in my mind, that I’m not quite as bright as I used to be” which was concerning for them since it affected their ability to care for themselves and perform tasks such as cooking and taking medications.  The duration of cognitive effects and fatigue had a direct psychological effect on  participants as one stated: “I didn’t feel like I had made that much progress, and I was starting to get pretty depressed and it was because I was going, well, shit, you know, is this it? And you know, I’m not going to get any better.” Those who had symptoms that persisted months and years after surgery were left feeling in their recovery, unable to move forward.   Never ending health maintenance. This sub-theme represents participants’ life after TEVAR which requires regular, and life-long ongoing health maintenance. This involves continuing to take medication, undergoing regular diagnostic imaging, and for some, more surgeries or medical interventions. This health maintenance is crucial to ensure further aortic expansion or endovascular graft displacement is detected and addressed in a timely manner.    The need for medication after surgery was a disappointment for participants. It seemed that they hoped medication would no-longer be necessary after surgery. One participant stated: “Now I’m on a lot of medication my friends tell me, compared to a lot of heart patients, because I guess the goal was to lower blood pressure, than most heart patients would have.” Two others were also troubled about the number of medications they were taking: “I take five different medications to keep my blood pressure down” said one, and the other said:  I’m taking six pills a day, basically the same ones I was taking when I came out of   hospital. My blood pressure is really under control… But I’m still taking ramipril that   I’ve always taken, but I’ve got metoprolol, ramipril, rosuvastatin, aspirin, amlodipine.   Yeah. I don’t like taking all this stuff.                                                                                                                                                                                 89 The continued need for medication may have been a constant reminder they had a chronic illness, and that regular health maintenance would be necessary for the duration of their lives.   Regular diagnostic imaging was a health maintenance activity. For some, imaging became a source of stress and anxiety because having a test left them waiting for results in an all too familiar state of limbo. The test meant there was a chance they would have to undergo more  of those MRIs. I mean, there really isn’t anything there to be that afraid of, and they never bothered me. For years, I had them off and on. And last time I went in there, I was just terrified.” When exploring this further, I learned that after a previous MRI this individual was sent to the emergency department because the arch vessel bypass graft had collapsed, and they required urgent surgery.   The relief and respite of successfully recovering from elective TEVAR was also short-lived for those who ended up requiring additional surgeries and interventions10. In total, ten participants underwent further repairs to their aorta during the first two years after TEVAR. Only one participant had a planned procedure whereas the others learned about needing additional procedures after imaging. When informed of the need for another procedure one participant stated: “I was very, very surprised and kind of disappointed that I was going to have another surgery.” This response was likely because many believed they would require one (TEVAR) surgery and needing another procedure shortly after crushed their positive outlook: “My mood was really good until when we came down in May there and they told me that it was leaking, I had to get it redone. Because everything—I thought everything was great. I felt great.”   Feeling frail. When speaking about their lives after TEVAR, participants made numerous comments that alluded to uncertainty, nervousness and constant reminders about their  10 Interventions refer to the procedures performed in Interventional Radiology.                                                                                                                                                                                90 disease. When considering these experiences and comments, some may have developed a feeling of frailty that manifested as nervousness and worry as detected by the spouse of a participant:  Since the first one, his operation until now, I think he’s changed a little bit, you know,   he’s more nervous, you know? He got more nervous than before. Before, he can  manage whatever happened. Yeah, but after that, it’s a big change. He’s been more  worried.  Participants also felt unease when they experienced aches and pains because they were concerned something was wrong. One participant described this as: “psychologically, always conscious of the fact that it happened, and you know, as I said anytime you get an ache or a pain, particularly an ache in your abdomen or chest somewhere, then you start thinking, oh no.”   Participants also had fear and anxiety related to their endovascular graft. They worried about the position of the graft: “you tend to be a little bit more – you know, I wouldn’t call it hypochondriac, but you – you know, you’re really conscious of the fact there’s something inside me that wasn’t there before, you know, the stent.” Others had direct concerns about whether the stent would last, and if an injury like a fall would result in damage to the graft. These comments showed the feelings of frailty for their physical health:   Well now, it’s how long are they going to last, sort of thing, is what I sort of think about.   Like they – it’s in there. What’s going to – if I do something… but if I fall, is the thing –   can it shift? You know, like it’s only being held in there by blood.  Another participant had similar concerns about falling: “I’m scared of getting bumped. I still had that scaredness going on, of people might—I might get hurt. They’d have to redo the surgery again.” A third participant described being fearful of injury from just walking their dog: “I couldn’t walk the dog because I was afraid he would pull, because both sides were affected,                                                                                                                                                                                91 right?... I was worried about if he pulled, I’d fall.” This concern of frailty occurred during the initial post-operative period as well as into the long term for some individuals.     The participants who expressed anxiety, worry, and felt frail, were possibly expressing the uncertainty in their lives associated with having TAD and undergoing TEVAR. This state of uncertainty likely added to the stress of everyday life and impacted their recovery.  Describing post-operative recovery with clinical data. The final theme and subthemes are further explained by the duration of post-operative events, length of hospital stay, complications and the dimensions of recovery from the clinical review. Table 11 (pg. 93) shows the duration of post-operative events. The mean duration patients had of decreased level of consciousness was 9 hours, 37 minutes, and the mean duration of mechanical ventilation was 10 hours, 58 minutes. Patient’s average length of stay in the CSICU was 2 days, 21 hours, and 2 minutes, and the mean duration patients had a urinary catheter was 2.8 days and 3.3 days until patients’ first post-operative bowel movement. The results according to TAD pathology, showed that patients who had a TAAA, had a longer mean duration of decreased consciousness, the longest mean ventilation time, and the longest CSICU stay when compared to the DTA and dissection groups.  The final duration variable identified was the mean total length of stay (LOS) in hospital as well as discharge disposition which are presented below in Table 12 (pg. 94). The Mean length of stay in hospital for the population was 8 days (SD = 6.4, Mdn = 7). When analyzed by quartiles, 25% of patients were discharged by POD 5, 50% by POD 7, and 75% by POD 9. When analyzed by sex and then by pathology, females had a longer stay in hospital (Mean = 9.9, SD = 7.0) and patients in the TAAA group had the longest hospital stay (Mean = 11.8, SD = 8.0).                                                                                                                                                                                 92 Table 11: Duration of Events in Post-operative Recovery from Elective TEVAR   All  N (%) Sex  n (%) Pathology of TAD n (%)   days, hrs: min  Male 68 (64.2%)  Female 38 (35.8%) Aortic Dissection 37 (34.9%)  DTA 41 (38.7%)  TAAA 28 (26.4%)  Duration of decreased consciousness & unresponsiveness (induction - awakening)  missing Mean (SD±) Median Min Max  2 9:37 (7:28) 7:38 1:54 52:50  1 9:58 (8:18) 8:04 1:54 52:50  1 8:58 (5:41) 6:56 2:29 31:00  0 8:53 (4:28) 7:36 3:20 27:14  1 8:02 (7:42) 6:51 1:54 52:50  1 12:57 (9:22) 10:30 4:36 39:57  Duration of mechanical ventilation (hrs) (intubation – extubation)  missing Mean ( SD)  Median Min Max  2 10:58 (12:24) 8:37 1:57 4d, 22:56   0 10:34 (6:53) 9:02 1:57 1d, 20:43  2 11:42 (18:59) 7:43 2:19 4d, 22:56  0 9:12(4:20) 8:39 3:00 1d, 00:10  0 9:59 (7:57) 7:54 1:57 1d, 20:43  2 15:01 (21:57) 9:44 3:45 4d, 22:56   Duration of CSICU stay (hrs)   missing Mean  Median Min Max  3 2d, 21:02  2d, 00:35 4:15 27d, 10:10  1 2d, 12:02  1d, 22:15 4:14 13d, 1:10  2 3d, 13:49 2d, 2:47 7:16 27d, 10:10  1 2d, 1:12 1d, 20:35 4:15 7d, 23:20  0 3d, 5:42 2d, 1:55 7:16 27d, 10:10  2 3d, 10:50  2d, 21:08 20:00 9d, 00:13  Duration of  urinary catheter (days)  missing Mean ( SD) Median Min Max  7 2.8 (2.0) 2 1 10  1 2.6 (1.95) 2 1 10  6 3.2 (2.1) 3 1 10  0 2.4 (1.35) 2 1 6  4 3.0 (2.27) 2 1 10  3 3.1 (2.36) 2 1 10   POD until  first BM  missing Mean ( SD) Median Min Max  8 3.3 (1.2) 3 1 6  6 3.2 (1.25) 3 1 6  2 3.6 (1.18) 3.5 1 6  1 3.3 (1.17) 3 2 6  6 3.3 (1.23) 3 1 6  1 3.3 (1.36) 3 1 6 Note. Percentages rounded to first decimal place; may not add to 100% because of rounding. TAD = Thoracic aortic disease, DTA = Descending thoracic aneurysm, TAAA = thoraco-abdominal; SD = standard deviation; CSICU = cardiac surgery intensive care unit; POD = post-operative day; BM = bowel movement                                                                                                                                                                                93 Overall, 70% of the of the population were discharged on or before POD 8. A smaller proportion of females were discharged by this time (approximately 60%), and likewise a smaller proportion of TAAA patients (50%).      Table 12: Length of Hospital Stay and Discharge Disposition  All  N (%) Sex  n (%) Pathology of TAD n (%)     n = 106  Male 68 (64.2%)  Female 38 (35.8%) Aortic Dissection 37 (34.9%) DTA 41 (38.7%) TAAA 28 (26.4%)    Total Length of Hospital Stay (days)     In Hospital Numbers   Mean ( SD) Median Min Max  25th percentile 50th percentile 75th percentile   By POD 8 POD 9 or after    8.3 (6.4) 7.0 2 44  5.0 7.0 9.0  75 (70.8%) 31 (29.2%)  7.4 (5.9) 5.5 2 44  4.3 5.5 8.0  52 (76.5%) 16 (23.5%)  9.9 (7.0) 8.0 2 41  6.0 8.0 12.0  23 (60.5%) 15 (39.5%)  7.2 (6.9) 5.0 2 44  5.0 5.0 7.0  30 (81.1%) 7 (18.9%)  6.9 (3.2) 7.0 2 15  4.0 7.0 8.5  31 (75.6%) 10 (24.4%)  11.8 (8.0) 8.5   3 41  7.0 8.5 14.0  14 (50%) 14 (50%)   Disposition  Home other hospital Rehab Died  87 (82.1%) 10 (9.4%) 2 (1.9%) 7 (6.6%)  61 (89.7%) 4 (5.9%) 2 (2.9%) 1 (1.5 %)  26 (68.4%) 6 (15.8%) 0 6 (15.8%)   35 (94.6%) 1 (2.7%) 1 (2.7%) 0  33 (80.5%) 5 (12.2%) 0 3 (7.3%)  19 (67.9%) 4 (14.3%) 1 (3.6%) 4 (14.3%)  Note. Percentages rounded to first decimal place; may not add to 100% because of rounding. TAD = Thoracic aortic disease, DTA = Descending thoracic aneurysm, TAAA = thoraco-abdominal  POD = post-operative day  Discharge disposition showed 87 (82.1%) patients were discharged home, 10 (9.4%) went to another hospital, 2 (1.9%) went to a rehabilitation facility, and 7 (6.6%) patients died in hospital. Differences in sex and pathology showed six patients who died were female, three were in the DTA group, and four were in the TAAA group.                                                                                                                                                                                94  Complications. The frequency of post-operative complications is presented in Table 13 (pg. 96). Of the population, less than 10% did not experience any of the complications listed. For the 90% who did experience complications, the most common were: the need for blood transfusion (n = 44, 42.7%), pleural effusion (n = 36, 34%), groin hematoma (n = 24, 22.6%), fever (n = 18, 17%), endoleak (n = 16, 15%), delirium (n = 16, 15.1%), acute renal failure (n = 12, 11.3%), headache following removal of CSF drain (n = 11, 10.4%), and dysphagia (n = 11, 10.4%).   When analyzed by sex, females had a higher rate of post-operative complications such as:  CSF leak, headache after CSF drain removal, neck hematoma, need for pacemaker, fever, blood transfusion, endoleak and dysphagia. Males were found to have higher rates of pleural effusion and thrombocytopenia. Analysis by pathology showed patients with TEVAR for aortic dissection had the highest rate of headache after CSF drain removal, pleural effusion, and hoarseness after surgery. Patients who had TEVAR for DTA had the highest rate of delirium, and patients who had TEVAR for TAAA had the highest rates of paraparesis, CSF leak, groin hematoma, OR re-intervention, thrombocytopenia, blood transfusion and endoleak.      Re-intervention rates consisting of additional surgeries or procedures that occurred either in the operating room or in interventional radiology are also reported. In total, 8 (7.5%) were operating room procedures which included: laparotomy for intestinal ischemia, extension of an endovascular graft to treat an endoleak, colonoscopy for bowel infarct, evacuation of a groin hematoma, evacuation of neck hematoma, and insertion of permanent pacemaker, and 6 (5.7%) of procedures were performed in interventional radiology and included: embolization of pneumothorax, thrombin injection of a pseudoaneurysm, and celiac artery embolization.                                                                                                                                                                                 95 Table 13: Post-Operative Complications After Elective TEVAR   ALL N (%) Sex N (%) Pathology of TAD  N (%)  106 (100%) Male 68 (64.2%) Female 38 (35.8%) Aortic Dissection  37 (34.9%) DTA 41 (38.7%) TAAA 28 (26.4%)  No complications  8 (7.5%)  7 (10.3%)  1 (2.6%)  4 (10.8%)  4 (9.8%)  0  Delirium Paraparesis Paraplegia CVA Seizure CSF leak (n= 3) CSF headache  16 (15.1%) 8 (7.5%) 1 (0.9%) 8 (7.5%) 3 (2.8%) 7 (6.6%) 11 (10.4%)  10 (14.7%) 6 (8.8%) 0 5 (7.4%) 1 (1.5%) 5 (7.4%) 6 (8.8%)  6 (15.8%) 2 (5.3%) 1 (2.6%) 3 (7.9%) 2 (5.3%) 7 (18.4%) 7 (18.4%)  3 (8.1%) 2 (5.4%) 0 2 (5.4%) 0 2 (5.4%) 8 (21.6%)  9 (22%) 3 (7.3%) 0 4 (9.8%) 2 (4.9%) 1 (2.4%) 1 (2.45)  4 (14.3%) 3 (10.7%) 1 (3.6%) 2 (7.1%) 1 (3.6%) 4 (14.3%) 2 (7.1%)  Atrial fibrillation  8 (7.5%)  6 (8.8%)  2 (5.3%)  2 (5.4%)  4 (9.8%)  2 (7.1%)  Pleural effusion Re-intubation  36 (34%) 5 (4.7%)  27 (39.7%) 2 (2.9%)  9 (23.7%) 3 (7.9%)  19 (51.4%) 1 (2.7%)  9 (22%) 1 (2.4%)  8 (28.6%) 3 (10.7%)  UTI Acute renal failure  5 (4.6%) 12 (11.3%)  2 (2.9%) 9 (13.2%)  3 (7.9%) 3 (7.9%)  1 (2.7%) 6 (16.2%)  2 (4.9%) 1 (2.45)  2 (7.1%) 5 (17.9%)  Groin hematoma  Neck hematoma  24 (22.6%) n = 49 7 (14.3%)  15 (22.1%) n = 36 1 (2.8%)  9 (23.7%) n = 13 6 (46.2%)  9 (24.3%) n = 23 3 (13%)  7 (17.1%) n = 18 1 (5.6%)  8 (28.6%) n = 8 3 (10.75)  Re-intervention IR Thoracentesis Pacemaker Re-intervention OR  6 (5.7%) 2 (1.9%) 3 (2.8%) 8 (7.5%)  4 (5.9%) 1 (1.5%) 0 3 (8.8%)  2 (5.3%) 1 (2.6%) 3 (7.9%) 5 (13.2%)  1 (2.7%) 0 0 2 (5.4%)  3 (7.3%) 2 (4.9%) 2 (4.9%) 2 (4.9%)  2 (7.1%) 0 1 (3.6%) 4 (14.3%)  Temp > 37.5°  18 (17%)  10 (14.7%)  8 (21.1%)  6 (16.2%)  6 (14.6%)  6 (21.4%)  Thrombocytopenia Blood transfusion  14 (13.2%) 44 (42.7%)  11 (16.2%) 15 (22.1%)  3 (7.9%) 29 (76.3%)  3 (8.1%) 9 (24.3%)  3 (7.3%) 15 (36.6%)  8 (28.6%) 20 (71.4%)  Endoleak Dysphagia Hoarse voice   16 (15.1%) 11 (10.4%) 10 (9.4%)  8 (11.8%) 5 (7.4%) 7 (10.3%)  8 (21.1%) 6 (15.8%) 3 (7.9%)  2 (5.4%) 4 (10.9%) 7 (18.9%)  6 (14.6%) 2 (4.9%) 1 (2.4%)  8 (28.6%) 5 (17.9%) 2 (7.1%) Note. Percentages rounded to first decimal place; may not add to 100% because of rounding. TAD = Thoracic aortic disease, DTA = Descending thoracic aneurysm, TAAA = thoraco-abdominal  CVA = cerebral vascular accident (Stroke), CSF = cerebral spinal fluid, UTI = urinary tract infection   IR = Interventional radiology, OR = operating room  Recovery according to Allvin et al.’s dimensions.  Table 14 (pg. 98-100) presents the dimension, variables and results according to the first eight post-operative days beginning one day after surgery. Within the first eight post-operative days the majority (70%) of                                                                                                                                                                                96 the population were discharged. The following paragraphs summarize the events of post-operative days 1-4, and days 5-8.   Summary of post-operative days 1-4. The first four post-operative days represent that immediate recovery phase where the goal is to regain basic functions following surgery. Regarding the activity dimension, all participants but one, stayed overnight in the CSICU following TEVAR. The rate of transfer to the inpatient unit was highest on POD 1 with approximately one third of patients transferred, followed by POD 2 with slightly less than one third transferred. Discharge from hospital began on POD 2 with 3 discharges, but discharge rates remained low for the first four post-operative days with a total of only 16 (15%) patients discharged and there was one death on POD 2.  Ventilation, oxygenation, and CSF drains are the remaining variables under activity. Regarding ventilation, 80% of patients were extubated on POD 0 and by POD 4, there were only seven patients who remained mechanically ventilated however, on POD 1, and 3, two patients were reintubated. Following extubation, almost all patients (approximately 88%) required supplemental oxygen and this number decreased over the first four post-operative days. Lastly, a total of 83 patients had a CSF drain and most were removed on POD 2, with only one CSF drain remaining by POD 4.    97  Table 14: Dimensions of Recovery by Post-Operative Day (all patients N = 106)     POD 1 N = 106  POD 2 N = 106  POD 3 N = 102  POD 4 N = 97  POD 5 N = 88  POD 6 N = 68  POD 7 N = 57  POD 8 N = 44 Activity   Location of  care & disposition          Oxygen therapy          CSF drainage Remaining  In CSICU*   68 (64.2%)  39 (36.8%)  29 (28.4%)  15 (15.5%)  10 (11.4%)   8 (11.8%)  6 (10.5%)  3 (6.8%) Transferred to nursing unit   37 (34.9%)   29 (27.4%)  10 (9.8%)  14 (14.4%)  5 (5.7%)  1 (1.5%)  3 (5.2%)  3 (6.8%)  Discharged   0  3 (2.8%)  5 (4.9%)  9 (9.3%)  19 (21.6%)  11 (16.2%)  13 (22.8%)   13 (29.5%)  Died   0  1 (1%)  0   0   1 (1.1%)  0  0  0  Ventilated At end of day  22 (20.8%)  11 (10.4%)  7 (6.9%)  7 (7.2%)  6 (6.8%)  5 (7.4%)  4 (7%)  3 (6.8%)  Extubated  Before end of day   13 (12.3%)  3 (2.8%)  2 (2%)  1 (1%)  1 (1.1%)  0  0  1 (2.3%)  Re-intubated   2 (1.9%)  0  2 (2%)  0  1 (1.1%)  0   0   0   Requiring Oxygen Missing    93 (87.7%) 3  80 (75.5%) 3  55 (53.9%) 3  33 (34%) 3  22 (25%) 3  18 (26.5%) 2  15 (26.3%) 2  9 (20.5%) 2  N = 83    CSF drain  at end of day  55 (66.3%)  19 (22.9%)  8 (9.6%)  1 (1.2%)  1 (1.1%)  0  1 (1.8%)   1 (1.2%) Physical Functions    Nutritional intake  NPO  16 (15.1%)  6 (5.7%)  4 (3.9%)  2 (2.1%)  1 (1.1%)  1 (1.5%)   2 (3.5%)  0   Clear or full fluids  59 (55.7%)  19 (17.9%)  12 (11.8%)  7 (7.2%)  7 (8%)  8 (11.8%)  3 (5.3%)  3 (6.8%)  Regular diet  28 (26.4%)  75 (70.8%)  77 (75.5%)  75 (77.3%)  68 (77.3%)  50 (73.5%)  43 (75.4%)  34 (77.3%)   98        POD 1 N = 106  POD 2 N = 106  POD 3 N = 102  POD 4 N = 97  POD 5 N = 88  POD 6 N = 68  POD 7 N = 57  POD 8 N = 44 Physical Functions Nutritional intake  Enteral feeds  2 (1.9%)  6 (5.7%)  9 (8.8%)  9 (9.3%)  10 (11.4%)  9 (13.2%)  8 (14%)  7 (15.9%)    Elimination   Urinary catheter  85 (80.2%)  41 (38.7%)  28 (27.5%)  26 (26.8%)  17 (19.3%)  20 (29.4%)  19 (33.3%)  15 (34.1%)    POD of first BM   2 (1.9%)  30 (28.3%)  23 (22.5%)  24 (24.7%)  15 (17%)  4 (5.9%)  0  0       Mobilization    Bedrest  21 (19.8%)  11 (10.4%)  7 (6.9%)  6 (6.2%)  7 (8%)  5 (7.4%)  5 (8.8%)   2 (4.5%)  Dangle & stand/chair  49 (46.2%)  21 (19.8%)  11 (10.8%)  6 (6.2%)  5 (5.7%)  5 (7.4%)  4 (7%)   4 (9.1%)  Walk with assistance  31 (29.2%)  31 (29.2%)  28 (27.5%)  25 (25.8%)  18 (20.5%)  18 (26.5%)  18 (31.6%)  13 (29.5%)   Walk Independently  5 (4.7%)  43 (40.6%)  56 (54.9%)  60 (61.9%)  58 (65.9%)  40 (58.8%)   30 (52.6%)  25 (56.8%) Physical Symptoms   Narcotic analgesia  IV analgesia   50 (47.2%)  24 (22.6%)  16 (15.7%)  13 (13.4%)  12 (13.6%)  5 (7.4%)  5 (8.8%)  3 (6.8%)  PO analgesia   70 (66%)   59 (55.7%)   45 (44.1%)  42 (43.3%)  32 (36.4%)  27 (39.7%)  21 (36.8%)  15 (34.1%)   Sedation      Bedtime sedation    37 (34.9%)  30 (28.3%)  24 (23.5%)  24 (24.7%)  24 (27.3%)  21 (30.9%)  16 (28.1%)  10 (22.7%)  Sedation Infusion  9 (8.5%)  9 (8.5%)  7 (6.9%)  5 (5.2%)  3 (3.4%)  1 (1.5%)  0  0     99     POD 1 N = 106  POD 2 N = 106  POD 3 N = 102  POD 4 N = 97  POD 5 N = 88  POD 6 N = 68  POD 7 N = 57  POD 8 N = 44  Physical Symptoms    Antiemetic  1 antiemetic  17 (16%)  13 (12.3%)  4 (3.9%)  7 (7.2%)  7 (8%)  6 (8.8%)  8 (14.0%)  5 (11.4%)  ≥ 2 antiemetics   9 (8.5%)  4 (3.8%)  3 (2.9%)  7 (7.2%)  3 (3.4%)  4 (5.9%)  0  1 (2.3%)    Blood Transfusion   RBCs  25 (23.6%)  15 (14.2%)  9 (8.8%)  5 (5.2%)  4 (4.5%)  3 (4.4%)  1 (1.8%)  3 (6.8%)  Platelets  5 (4.7%)  1 (1%)  2 (2%)  3 (3.1%)  2 (2.3%)  1 (1.5%)  1 (1.8%)  1 (2.3%)  RBCs & Platelets   6 (5.7%)  8 (7.5%)  2 (2%)  1 (1%)  0  1 (1.5%)  0  0 Psychological    Delirium & Fever   Delirium diagnosis  12 (11.3%)  16 (15.1%)  14 (13.2%)  9 (9.3%)  10 (11.4%)  9 (13.2%)  3 (5.3%)  3 (6.8%)  Anti-psychotic     30 (28.3%)  35 (33%)  35 (34.3%)  28 (28.9%)  24 (27.3%)  20 (29.4%)  15 (26.3%)  11 (25%)  Fever  3 (2.8%)  8 (7.5%)  7 (6.9%)  3 (3.1%)  3 (3.4%)  5 (7.4%)  1 (1.8%)  2 (4.5%)  Additional procedures & illness   IR procedures  0  0  0  2 (2.1%)  0  2 (2.9%)  2 (3.5%)  0  OR procedures   3 (2.8%)  1 (1%)  0  0  0  1 (1.5%)  2 (3.5%)  0  Note. Percentages rounded to first decimal place; may not add to 100% because of rounding. Percentages are calculated based on number of patients remaining in hospital on each post-operative day.  POD = post-operative day  PO = per os (by mouth); IV = intravenous RBC = Red blood cells CSICU = cardiac surgery intensive care unit. * denotes number of patients in CSICU at the end of the day. CSF = cerebral spinal fluid  NPO = nothing per os /nothing by mouth  OR = operating room; IR= interventional radiology    The physical functioning of patients during the first four post-operative days included over half tolerating a fluid diet on POD 1, and 70% progressing to a full diet by POD 2. Elimination showed more than 80% had a urinary catheter on POD 1 but this decreased to less than 40% by POD 2 and only one quarter of patients still had a catheter on POD 4. During POD 2, 3 and 4, 20-30% of patients had their first bowel movement. Mobility showed very few patients were able to walk independently on POD 1 but almost half were able to sit at the edge of bed or in a chair and approximately one third walked with assistance. By POD 4, more than half of the patients were walking independently.   The physical symptoms dimension for POD 1-4 showed that patients required the highest amount of both IV and oral analgesia on POD 1 which declined over the first 4 days. Finally, POD 1 also had the highest rate of bedtime sedation, antiemetic, and red blood cell administration of the first four days.  The psychological dimension shows that POD 2 had the highest rate of delirium diagnosis (15%), yet approximately one third of patients received anti-psychotic medications POD 1-4. The other variables showed that the highest rate of fever occurred on POD 2, and two patients required IR procedures on POD 4, and three patients had an additional surgery on POD1, and one patient had additional surgery on POD 2.    Summary of Post-Operative Days 5-8.  The activity dimension for POD 5-8 shows the continued decreased in patients being cared for in CSICU, and the continued rate of discharge. The highest number of patients were discharged on POD 5 and by the end of POD 8, a total of 75 (71%) of patients had left the hospital. There was also a low number of patients who required mechanical ventilation POD 5-8 and the rate of supplemental oxygen use decreased daily.  101  Regarding CSF drains, on POD 7 and 8 there was one patient with a drain which was inserted for an additional TEVAR surgery required on POD 7.    The physical functions dimension showed most patients were taking a regular diet with only a few on fluids and 7-10 patients were receiving enteral feeds POD  -8. The rate of urinary catheters stayed between 19-34% during these post-operative days, and there was no documentation of patients having their first bowel movement on POD 7 or 8. Regarding mobilization, 50-60% of patients who remained in hospital, were walking independently during this time, and approximately 20-30% were walking with assistance.   The physical symptoms dimension showed 7-13% of patients received IV analgesia, and approximately 30-40% of patients were still receiving PO narcotic analgesia on POD 5-8. The rate of night sedation, antiemetic and blood transfusion administration was low and continued to decrease for POD 5-8.   The last dimension of psychological recovery showed decreases in delirium rates and anti-psychotic administration for the last four post-operative days. This period was when the highest rate of additional procedures in both IR and the OR occurred POD 6 and 7, four patients had IR procedures and three patients had OR procedures.  Recovery trends. The dimensions of recovery are displayed in line grafts to provide a visual graphic of the trends and progression of recovery. A narrative description of each trend follows each figure.  Activity dimension trends. The location of care is displayed below in Figure 4 (pg. 103). As expected, the daily percentage of patients remaining in CSICU (at the end of the day) decreased with the biggest decrease occurring between POD 1 and POD 2. The second largest decrease in the number of patients in CSICU occurred between POD 3 and POD 4. The  102  remainder of the post-operative days did not display large changes but rather a gradual decrease over time. Figure 4: Activity – Location of Care   Figure 5 (pg. 104) shows the percentage of patients who required a CSF drain as well as those who were ventilated, extubated, and required oxygen from POD 1-8. As anticipated, the percentage of patients with a CSF drain decreased every post-operative day. The percentage of patients who were ventilated decreased on POD 1, 2, and 3 but remained the same for POD 4, 5, 6, 7, and 8. The percentage of patients who required supplemental oxygen gradually decreased over time, but there was a slight increase on POD 6 where a higher percentage of patients required supplemental oxygen than on POD 5. Of note, 21% of patients remaining in hospital on POD 8 still required supplemental oxygen.    6437281611 12 117352710 1462 5703 5922162330010203040506070POD 1 POD 2 POD 3 POD 4 POD5 POD 6 POD 7 POD 8% of patients CSICU Transfer to Unit Discharged 103  Figure 5: Activity – Ventilation, Oxygen Requirements & CSF Drains   Physical functioning trends.  The variables for physical functioning are presented in Figure 6 (pp. 105). The line graph shows a decline of almost 50% of patients with a urinary catheter from POD 1 to POD 2, and by POD 8, 34% of the patients still required a urinary catheter.  The blue line shows the percentage of patients consuming a regular diet on each post-operative day. As expected, this rate is low on POD 1 at 26% however, there is a significant increase from POD 1 - POD 2 where 71% of patients progress to consuming a regular diet. The percentage of patients taking a regular diet remains 74-77% and on POD 8, 75% of the patients remaining in hospital are taking a regular diet.   The pink line shows the percentage of patients walking independently on POD 1-8, and the increase in patients’ mobility and independence on POD 1 and 2. This rate increased up until POD 5 when there was a slight decrease day 6 and 7. By POD 8, 57% of the patients in hospital were walking independently.  21107 7 7 7 7 7123 28876543425 27 26216623101 1 0 1 10102030405060708090100POD 1 POD 2 POD 3 POD 4 POD 5 POD 6 POD 7 POD 8% of patients Ventilated ExtubatedRequiring Oxygen CSF drain 104   The final line shows the percentage of patients who had their first bowel movement each post-operative day with the return of this function to more than 20% of patients on POD 2-4.  Figure 6: Physical Functions – Diet, Mobilizing & Elimination    Physical symptoms trends. The physical symptoms dimension is presented in Figure 7 (pg. 106) showing the percentage of patients who received IV and PO narcotic analgesia, antiemetics, bedtime sedatives, and blood transfusions.   The blue line representing the percentage of patients receiving PO narcotic analgesia shows a steady decline from POD1-POD 5, and then a slight increase on POD 6 which again decreased on POD 7 and 8. What is most interesting about this trend is that on POD 8, 34% of the patients remaining in hospital still required narcotic analgesia for pain control.   The percentage of patients receiving IV narcotic analgesia does not show any surprising trends and as anticipated, steadily decreases each post-operative day. This is also true for the percentage of patients who received transfusion of blood products. The highest percentage of patients were given transfusions on POD 1, and this rate then declined each post-operative day. 267176 77 7774 75 7554155626659535780392827192933 3422823 251760 00102030405060708090POD 1 POD 2 POD 3 POD 4 POD 5 POD 6 POD 7 POD 8% of patients Regular diet Walk independently Urinary catheter First BM 105  Figure 7: Physical Symptoms – Analgesia, Sedation, Antiemetics & Transfusion     The administration of antiemetics and bedtime sedation appears to fluctuate throughout the 8 post-operative days. Although the percentage of patients receiving bedtime sedation is highest on POD 1, the percentage stays consistent between 23-35%. Initially there is a steady decrease and then on POD 5, 6, 7, there is a higher percentage of patients taking bedtime sedation. When examining antiemetics, there is a sharp decrease on POD 1, 2, 3, and then an increase on POD 4, 5  Psychological recovery dimension trends. Figure 8 (pg. 107) presents a final line graph to display the variables for the psychological dimension. The pink line shows the percentage of patients given anti-psychotic medications which is consistent through-out the first 8 post-operative days ranging from 35-34%. On POD 2 and POD 3 the highest percentage of patients were given anti-psychotic medications, however, and no continued decrease is noted. The blue line represents the delirium diagnosis and shows fluctuation though. There was an increase in the percentage of patients diagnosed with delirium from 11% to 20% on POD 2. There was also a 47231613 1479 7665644 4336403734352824 2427312823251679 98 6341286 52 4010203040506070POD 1 POD 2 POD 3 POD 4 POD 5 POD 6 POD 7 POD 8% of patientsIV Analgesia PO AnalgesiaBedtime Sedation AntiemeticsTransfusion 106  decrease in the percentage of patients diagnosed with delirium on POD 4 and a slight increase on POD 5 and POD 6. Overall, on POD 8, 7% of patients in hospital had a diagnosis of delirium. The green line shows the percentage of patients who had a post-operative fever from POD 1-8.  Figure 8: Psychological Recovery: Delirium, Anti-psychotics, Fever & Interventional                    Radiology or Operating Room Procedures   This line shows the overall percentage of patients who had a post-operative fever was low and there was a slight increase on POD 2 and again on POD 6.  The final gray and yellow lines on the graph show the percentage of patients who required additional procedures either in IR or the OR. On POD 4 and POD 6, the highest percentage of patients required IR procedures, and on POD 1 and POD 7, the highest percentage of patients required an additional OR procedure.  111513911135 72833 3429272926 2538 7337250 0 0 2 03 4010102030405060POD 1 POD 2 POD 3 POD 4 POD 5 POD 6 POD 7 POD 8Delirium Diagnosis Anti-psychotics FeverIR Procedures OR Procedures 107  4.6  Summary of Findings  The findings from the participant interviews and the clinical review represented recovery from both TEVAR and the TAD recovery journey. The participant’s experiences of being diagnosed with TAD resulted in major changes and losses as well as a newfound level of vulnerability because of the unfamiliarity of the diagnosis. The clinical review showed the level of chronicity (prior to surgery) of the TEVAR patient population where many patients had multiple comorbidities and complex cardiovascular disease. Both the unfamiliarity of TAD and the complexity of TEVAR left patients reliant and having to trust a small group of specialists during their unrelenting journey to find wellness. The complexity of TEVAR surgery was emphasized by the intra-operative and post-operative data which showed the high level of risk associated with elective TEVAR evidenced by the duration of time patients spent in intensive care and the numerous complications they experienced affecting every organ system. While some patients felt their recovery was uneventful, many described an array of complications and the need for psychological and physical recovery supports showing the tumultuous journey of recovery faced by many patients.  The three major themes and data from the clinical review can inform practitioners about recovery from elective TEVAR. Understanding the impact of the overall TAD diagnosis and how TEVAR is one stage in the journey to wellness will help practitioners to provide better patient-centered care. “There is no small operation anymore” was stated by one participant as their interview came to an end. Reflecting on this statement, they may have been suggesting that some surgeries may seem small or simple (in comparison to others) to HCPs, but it is anything but simple for the individual who brings the entire illness experience with them when they get on the operating room table.   108  CHAPTER 5: DISCUSSION “The long-term approach to patients with successful initial treatment of aortic pathology begins with the appreciation of a systemic illness.” Akin et al. 2011.  The aim of this study was to explore the post-operative recovery experiences of patients who have undergone elective TEVAR surgery. In this chapter I summarize the key research findings and discuss their significance in relation to issues around chronicity, the particular challenges patients encounter through their recovery, the needs they experience, and the potential differences in recovery courses for female patients and those with different aortic pathologies.  5.1 The Recovery Journey  Recovery from TEVAR has surfaced as an uncertain and unrelenting psychological and physical journey where the obscure, specialized and complex nature of both TAD and TEVAR render patients to a level of vulnerability not commonly seen with many other acute cardiovascular illnesses. While current clinical indicators may leave an impression of uneventful physical recovery from elective TEVAR, factors including pathology of disease, biological sex, and the circumstances surrounding TAD diagnosis greatly impact patients’ perceptions of their health, well-being, and security over time.  In this study patients were most often 70 years or older, with a mean ASA score of IV11 with  high levels of comorbidities such as COPD, a smoking history, and increased BMI. This reflects Coady et al.’s (1999), findings of hypertension, CAD, COPD, and CHF as common comorbidities in their study of patients with thoracic aortic aneurysms. The aortic specific factors  11 ASA IV: Severe, life threatening, systemic disease (Daabiss, 2011).  109  showed most patients were taking 2-3 antihypertensive agents and the average aortic diameter was 59mm, greater than the European Society of Cardiology 55mm diameter cut off for preventative aortic surgery (Erbel et al., 2014).  After surgery patients stayed in ICU approximately 2-3 days, and recovery of some functions such as eating, elimination and ambulation occurred for most of the population on POD 2 and 3. Overall, seven patients died during recovery  and discharge home occurred on or before post-operative day eight for  approximately 71% of the patients and approximately 18% required an additional intervention, that for the majority was aortic specific. The length of stay in hospital may be a result of more than 90% of this population having at least one post-operative complication with anemia and pleural effusion being the most prevalent.  When the results from the clinical data are viewed and generalized, this population of patients may appear to have a predictably turbulent recovery from TEVAR, with most patients returning home within a week of surgery. Variations in recovery course may be explained by differing TAD pathology as evidenced by the aortic dissection group which tended to be younger with shorter hospital lengths of stay than the TAAA patient group. There may be differences in recovery based on biological sex however, with the relationship between TAD pathology and biological sex needing further examination. These findings suggest the in-hospital recovery from elective TEVAR is both lengthy and arduous before patients even reach home.  Nevertheless, the patient recovery stories provided more nuanced narrative of their recovery experiences. While the TEVAR surgery was a significant event in their lives, it was but one step in a journey to regain the health and wellness lost with their TAD diagnosis. Their stories of uncertainty, fear, anxiety, relief, persistent fatigue, and difficulty with mental clarity pointed to more of the psychosocial and invisible aspects of their recoveries, often not assessed  110  or considered in typical accounts of the acute phases of recovery. While most patients expressed gratitude in having been eligible to undergo TEVAR, and to their care teams, they also stated  concerns and frustrations because of their reliance on the specialty team. This reliance manifested as a vulnerability because they had an obscure cardiovascular disorder and an overly complex and intricate surgical intervention that is not well known or understood. Overall, the magnitude of the psychological challenges is comparable to the technical complexity of the intervention.    5.2 The Chronicity of TAD and TEVAR  The unique, intricate, and profound complexity of TEVAR drew me to focusing this study on recovery from this minimally invasive aortic surgery. It was not until I heard the stories from participants that I began to appreciate the chronicity of TAD underpinning their recovery experiences. From diagnosis, to adjusting to new health identities and life-long care, undergoing elective TEVAR was just one hurdle in their struggle to find and regain health.  Chronicity within this population was evident from the demographic, comorbidity, and risk factor data which showed more than 90% having a history of neurologic, respiratory, cardiac, or renal system related health challenges prior to TEVAR. The pre-operative clinical data also showed many patients (40%), had a history of open aortic surgery and previous endovascular surgery (20% had TEVAR or EVAR). The high rates of COPD, current or previous smoking history, hypertension, previous cardiovascular surgery, and cancer within the population were not entirely surprising when considering TEVAR is deemed the most appropriate surgical option for patients with multiple comorbidities (Tanaka et al., 2018). However, the rate of previous aortic surgery (open or endovascular) was higher than expected. Analysis of the demographic, comorbidity and surgical history data in this study helps to  111  dismantle the perception that recovery from TEVAR is the main health challenge. Recognizing the impact of underlying, systemic, and chronic disease is essential for successful long-term treatment and management (Akin et al., 2011).  Despite the level of chronicity documented in the health histories of this population, many of the interviewed participants described active and full lives, denying the significance of their chronic illnesses, history of major surgery, and the need to take medication before their TAD diagnosis. Perhaps this contradiction demonstrates the silent, indolent, and insidious nature of TAD (Elefteriades & Farkas, 2010), which can go untreated until an aortic dissection occurs, or when it is unintentionally detected via diagnostic imaging. Regardless, a perception of good health and the sudden shift to having an unpredictable, and potentially fatal cardiovascular illness such as TAD produced a sudden and dramatic change is self-perception for the participants. Haakseth et al. (2019) remind us of the potential existential crisis imposed on individuals who perceive themselves as independent and healthy, suddenly becoming a patient with a serious life-threatening disease when they receive a TAD diagnosis.  This perceived identity change is not easily ignorable because of the amount of attention and effort required by patients to responsibly manage their TAD over the long term. The regular CT and MRI imaging regimens required before and after TEVAR for effective long-term management (Akin et al., 2011), along with blood pressure monitoring and medication were all viewed negatively by the interview participants. Possibly this is because as Pettersson and Bergbom (2010) suggest, the imaging and subsequent follow-up would be a constant reminder of their chronic illness.     112  5.3 Recovery Challenges  The elective TEVAR patient population of this study experienced complications and adverse events that made recovery challenging. Although the clinical review only accounted for the in-hospital events that occurred during or immediately after TEVAR, more than 90% of the population experienced one or more complications throughout this period. While the severity and treatment of complications ranged from minor (as in the example of a urinary tract infection), to those with devastating effects (such as CVA), as well as those that required additional surgery, the high rate of complications following elective TEVAR may explain why most patients required at least a one-week hospital stay.  5.3.1 Fatigue and Recovery  Post-operative fatigue was a significant problem experienced by patients during their recovery at home. The fatigue was unexpected, and patients were unprepared for the effects it had on their daily activities, as it lasted weeks and months after surgery. Pettersson and Bergbom (2010), and Haakseth et al., (2019), found fatigue to be a significant problem for patients in their studies of recovery from AAA surgery and complex aortic repair. They stated patients were caught off-guard and unprepared by the fatigue and that it was frightening for them because of the limitations it imposed as well as the uncertainty as to its duration. The patients in this study also linked fatigue to feelings of frustration and wondering if they were recovering, which was also found by Zargar‐Shoshtari and Hill (2009), who also reported effects to attention, memory and concentration along with fatigue. Fatigue adds a missing, but key element to the clinical data likely because all patients experienced an expected level of weakness and activity restrictions in the initial post-operative period. Although the causes of post-operative fatigue are complicated and multifactorial,  113  inflammation, blood loss and internal reactions to the implanted endovascular graft may play a role (Zargar‐Shoshtari & Hill, 2009; Haakseth et al., 2019). Interestingly, the clinical data also showed almost half of the population required a transfusion of packed red blood cells to treat low hemoglobin levels (anemia)12 in the post-operative period. This means patients’ hemoglobin levels would have been less than 90 g/L13 to warrant a blood transfusion. Although discharge day hemoglobin levels were not available for all patients and therefore not analyzed, it is possible that patients in this study may have had mild or moderate anemia at discharge since Koch et al. (2017), mentions that the incidence of anemia after major surgery may be as high as 80-90%.  5.3.2 Reinterventions Interrupting Recovery  Additional aortic procedures or surgeries (referred to as reinterventions) that interrupted their recoveries was a challenge faced by some patients in this study. The clinical review showed a small group of patients required reinterventions during their post-operative hospital stay (18% for all interventions), and several interview participants described needing additional procedures in the weeks and months following discharge. Unfortunately, reinterventions following TEVAR is common. Geisbusch et al. (2011), reported reintervention rates of 22% and in the first five years following TEVAR which are often needed to treat both disease progression and endoleaks (Kamman et al., 2016; Bischoff et al., 2016). In this study, only three patients with an endoleak (identified during the post-operative period), had a reintervention. The patients who did not have a reintervention despite having an endoleak during their hospital stay leaves open the question of what the actual rate of endoleak and reintervention is for this elective TEVAR population within the first 1-5 years after surgery?  12 As per the World Health Organization (2011), mild post-operative anemia is hemoglobin 110–119 g/L in women        and 110–129 g/L in men, moderate is hemoglobin 80–109 g/L, and severe when hemoglobin is  < 80 g/ L. 13 The post-operative physician orders states RBC transfusion for hemoglobin less than 90 g/L.  114  Some studies have shown up to 20% of patients may have endoleak after TEVAR (Booher & Eagle, 2011). Many of the interview participants experienced adverse events and unexpected complications, some which required non-aortic procedures, or care from non-cardiovascular specialists. Some of the post-operative complications such as pleural effusions and delirium are prevalent in the larger cardiovascular surgery patient population while others such as paraplegia, CSF leak and headache, and groin wound hematomas are more specific for the TEVAR patient population. More details about these complications came from the interviews when the participants described many different health challenges throughout their recovery including: infections, needing homecare for leg wound incisions, vocal cord injections from ear, nose and throat specialists, and appointments with nephrologists because of impaired renal function.  5.4 Patient Needs During Recovery  The patient’s needs during recovery were expressed by the interview participants and many were not unique from those of other patient groups who undergo major surgery. During recovery from elective TEVAR, patients need i) information at all points in their journeys, ii) connection and access to their aortic specialist team, and iii) attention to, and support for psychological wellness during recovery. However, the small number of patients who undergo elective TEVAR results in an added level of vulnerability that is unique to this patient population because peer support may not exist or may be difficult to find. This is especially relevant when patients who are recovering experience unfamiliar symptoms and body sensations that provoke fear and anxiety. Not only do they lack a point of reference, but they also lack the ability to discuss their concerns with someone who has lived experience (Lapum et al., 2011).   115  5.4.1 Sense of Security to Alleviate Vulnerability Patients recovering from TEVAR may be at an increased risk of complications and prolonged recovery if disconnected from their aortic specialty team. With aortic specialists and aortic specialty programs limited in number and located only in urban centers, access for patients during recovery may be challenging. The participants in this study described feeling disconnected and alluded to a sense of insecurity after they had been discharged home. Haakseth, et al. (2019) also mentions that although the patients in their study had a three month follow up appointment with their surgeons, this was an insufficient amount of time to address their concerns. During the time between discharge and their appointments, patients felt alone, insecure, and unsupported in their recovery with little to no information about symptoms of possible complications to watch for (Haakseth, et al.). Lapum et al. (2011) and Jakobsson et al. (2014) both found that insufficient follow up meant patients took on the full responsibility for their self-care adding to their vulnerability as they transitioned home after heart surgery and colorectal cancer surgery.  5.4.2 Supported Transitions of Care  The life-long nature of TAD and the complexity associated with recovering from TEVAR emphasizes the importance of ensuring patients’ transitions of care are supported throughout their journey. Their interactions with acute care, primary care providers (PCPs), and aortic specialists are examples of their movement between services and their contact with various healthcare providers which The World Health Organization defines as transitions of care (WHO, 2016). The participants described multiple transitions of care between acute care, specialty aortic care, and primary care throughout their TAD and TEVAR recovery journeys.   116  Discharge home from acute care for patients after an acute dissection or after TEVAR are examples of transitions requiring more attention and coordination from the aortic specialty team in conjunction with the patient’s PCPs. Most interview participants had family members available to help them transition home after TEVAR however, a few did not which made transitioning to home to continue recovering more challenging. When asked, many participants stated that they felt prepared to go home whereas others mentioned experiencing significant discomfort and feeling unwell while travelling as well as after arriving at home.  The participants did not say they were unprepared for discharge however, they may have adapted to a level of uncertainty associated with having a rare condition. Participants did describe feeling unprepared for the complications they experienced, and many did not seek help from the aortic specialty team, but rather from their family doctor or local hospital. This underscores the need to address transitions during the coordination of patient care by both the acute and aortic specialty teams. Barnason et al. (2012) mention that providing patients with information about what to expect during recovery improves care transitions after discharge. They go on to say that strategies to facilitate transitions between services and providers are essential for patients with chronic health conditions who undergo complex interventions, and this has been found to be effective in decreasing hospital readmissions as well as medication issues and duplication of services (Barnason et al.). Patients who undergo elective TEVAR will inevitably face numerous health changes and healthcare transitions through out the remainder of their lives. All members of the healthcare team need to pay close attention to ensure coordinated care transitions to ensure adequate communication and transfer of information, as well as to ensure that patients are not at risk because they become lost to follow up.   117  5.4.3 Attention to Psychological Recovery The use of Allvin et al.’s (2009), dimensions of recovery as a framework was an attempt to incorporate the psychological dimensions of recovery, and the outcomes here suggest these are  just as relevant to patient’s experiences as the existing audit measure of length of hospital stay, morbidity, mortality, and physiologic functioning (Lee et al., 2014).  According to Alvin et al., the psychological and social needs of patients during recovery include anxiety, feeling down, loneliness and difficulty concentrating. While the interview data shows examples of anxiety, depression, frustration, fear, and effects on mood, the nominal amount of information available in the patient medical records posed a real challenge to data collection. This resulted in the only variable for the psychological dimension of recovery being post-operative delirium which was not based on standardized assessment and reporting.  This finding dramatically highlights the lack of standardized assessments for depression, anxiety, risk of social isolation, mood disturbances during post-operative recovery and adequate documentation in patients’ medical records. From the interview data, it is apparent that after both a TAD diagnosis and after TEVAR, patients experience anxiety, fear, loss, change, complications, and setbacks with cognitive and physical effects that can increase risk of depression and prolong or complicate recovery. Haakseth et al. (2019) stated that participants in their study described feeling psychologically drained and depressed because of a change in their self-perception to the sick role. Okamoto et al.,(2012), also found patients experienced anxiety and depression even a few years after thoracic aortic surgery.  Therefore, the findings from the interview data depicting the psychological and social challenges experienced by patients during recovery, tells us that regular and standardized assessments during the in-hospital phase of  118  recovery may assist in early identification of psychological challenges and allow for the allocation of appropriate resources to assist patients.  5.5 Different Recovery Courses Based on TAD Pathology  In the initial stages of this study, emphasis and attention was centered around the surgical intervention of TEVAR and less attention was given to the underlying disease and pathologies. However, my clinical practice experience with this patient population helped identify some differences in certain patients during data collection for the clinical review. The demographic data also seemed to be slightly different between patients who had had an aortic dissection versus those with atherosclerotic aneurysms of the descending or thoracoabdominal aorta (DTA and TAAA). This led to the separate analysis based on the different TAD pathologies which is recommended by Patterson et al. (2013), and Bicknell and Powell (2015), because TEVAR outcomes and complications are specific to the underlying pathologies.  5.5.1 Acute Aortic Dissection, TEVAR and Recovery Experiences In this study, 75% of the individuals who participated in the interviews had experienced an aortic dissection, and these participants tended to begin by telling me about this experience and the circumstances surrounding their diagnosis. Many of the patients described sudden and severe chest pain, back pain, or abdominal pain, and it quickly became evident that this experience was etched in their memory as they fully recalled details of the event as though it had just occurred. Elefteriades (2008), tells us that the pain associated with an acute dissection is so intense, it leaves patients and family members able to recall exactly when and where they were when it occurred. While tearing or ripping pain in the chest, back or abdomen are often described by patients who experience an aortic dissection, others experience more vague symptoms such as pulmonary edema and syncope making dissection less obvious and potentially resulting in a  119  missed or delayed diagnosis (Asouhidou & Asteri, 2009). Some of the interview participants described more general symptoms such as dizziness, shortness of breath, weakness, and an overall feeling of being unwell, and they too experienced a missed and delayed diagnosis. Unfortunately, missed, and delayed diagnosis of aortic dissection still occurs at a rate of 30 to 40% (Asouhidou & Asteri; Booher and Eagle’s 2011), which can have devastating consequences for patients.  The diagnosis experience was not the only difference in recovery between those who had TEVAR to treat an aortic dissection versus those who had an atherosclerotic aneurysm (without a dissection). The clinical review showed the mean age of patients in the dissection group was approximately ten years younger, with more males than females. This was similar to Clough et al. (2014) and Patterson et al.’s (2013) findings with a higher prevalence in males, and dissection patients being significantly younger than those presenting with an atherosclerotic aneurysm. As well, aortic diameter was on average smaller in the dissection group, and more patients required arch vessel surgery. Finally, patients in the dissection group had higher rates of CSF headaches, pleural effusions, and hoarseness than the DTA or TAAA groups.   5.5.2 DTA Versus TAAA Recovery Experiences  The pathology associated with the patients in the DTA and TAAA groups is similar, however the technical aspects of the surgery can differ in complexity and duration. Bicknell and Powell (2015), state that improvements in graft design with custom made fenestrated and branched grafts have allowed patients with distal aortic disease to undergo TEVAR (in highly specialized aortic endovascular centres) with good results. In this study, only one interview participant had TEVAR for TAAA and three had TEVAR for DTA. The participant who experienced the TAAA discussed suffering from complications such as stroke, fatigue, persistent  120  pain, and cognitive difficulties that prevented them from ever reaching their pre-surgery level of functioning and health illustrating the chronicity experienced after TEVAR.    The clinical data showed more potential differences with the TAAA group and in-comparison to the aortic dissection group the DTA group had the highest rate of pre-operative CVA, open AAA surgery history and previous TEVAR. The TAAA group on the other hand, had the highest mean age, the most females, and the highest rates of COPD, type 2 diabetes, the largest aortic diameters and the highest rate of previous coronary artery bypass grafting and surgery for Cancer. As expected, the TAAA group had the longest duration of surgery, mechanical ventilation, ICU stay, and overall hospital stay. The TAAA group also had the highest rate of death during in-hospital recovery. These findings are not surprising when viewed in relation to other literature comparing outcome and aortic pathologies. Patterson et al. (2013), found that TEVAR patients with atherosclerotic aneurysms had a higher rate of adverse outcomes then patients with chronic type B aortic dissections who also had elective TEVAR.  5.6  Differences in TEVAR Recovery for Female Patients   With the abundance of studies examining the effects of sex and gender in the greater cardiovascular literature, and with almost twice as many males in the patient population, it was important to classify patients according to biological sex to point to possible differences in recovery courses. The females in this study were older and had a higher rate of CSF leak, headache after CSF drain removal, neck hematoma, and need for pacemaker after TEVAR and these findings require further analysis to better understand these differences. The clinical review also showed more females in the TAAA pathology group and more males in the aortic dissection group, yet only one quarter (4) of the interview participants were female.   121  While aortic pathology may provide the explanation for some of the differences, females in this study were older, less were married, had higher rates of TIA, COPD, MI and history of orthopedic surgery, and females had lower rates of previous cardiovascular surgery. Intra-operatively, as expected with more females in the TAAA group, they had less arch vessel surgery and a higher rate of custom endovascular grafts and CSF drains. In the post-operative period, females had longer ICU and hospital stay and higher complication rates: CSF leaks, CSF headaches, OR interventions, pacemaker insertions, fever, blood transfusion, endoleak and dysphagia. Lastly, of the patients who died in hospital, 6 of the 7 were female. These findings were consistent with other studies examining biological sex differences which indicate that female patients tend to be older, and so have more comorbidities, and worse outcomes and higher mortality than their younger male counterparts (Cheung et al., 2017; Witheford et al., 2020; Groepenhoff & den Ruijter, 2020).  While less sex and gender-based research has been conducted on patients with TAD, numerous studies have examined and identified sex and gender differences in patients with AAA who undergo open and endovascular surgery (Katz et al.,1997; Nienaber et al., 2004; Erbel et al., 2014). Overall, studies examining differences in TAD and treatment for females have also shown that degenerative thoracic aneurysm growth rates are greater in females, and females are more likely to experience an aortic dissection (Cheung et al., 2017) and then have worse surgical outcomes even with TEVAR (Groepenhoff & den Ruijter, 2020; Witheford et al., 2020).   Finally, it is important to emphasize that despite the small number of females who participated in the interviews, specific issues of missed and delayed diagnosis, extensive and difficult recovery, and having to manage recovery on their own arose in their narratives. Whilst the clinical review data points to possible sex-based differences in conventional outcomes, it is  122  difficult to truly gauge if these differences are significant from frequency analysis alone. This is partly due to the differences in recovery based on TAD pathology and that the TAAA group consisted of 60% females and only 13% in the dissection group. Therefore, further analysis accounting for differences in TAD pathology would help to determine if there truly is a sex-based difference in recovery. Lastly, while comparisons between male and female patients is evident in the TEVAR literature, no evidence with respect to any potential gender differences in the recovery experience from TAD and TEVAR currently exists.  5.7 Strengths and Limitations 5.7.1 Study Strengths A major strength of this study was the methods employed that facilitated an in-depth and nuanced exploration of recovery to answer the research questions. This work represents the first exploration of recovery from elective TEVAR using both data from medical records and patient’s directly reported experiences. Since the primary research question was centered on understanding and then describing how patients experienced recovery from elective TEVAR, it was essential to include the patients’ voices. Although paramount to understanding the recovery of experience, patient accounts and recall of events are impacted by the circumstances and complexity of TEVAR. Interpretive description methodology provided the design flexibility to include collection of clinical indicators and analysis of rate and frequency. Since TEVAR has revolutionized aortic surgery and continues to evolve, a description of recovery from the perspectives of patients in the context of clinical indicators would provide a much better opportunity for meaningful application of the findings to the practice setting. Therefore, ID provided the flexibility to incorporate different forms of data and analytical techniques to gain a comprehensive understanding and create a more rigorous description of the phenomenon.   123  Another important strength of this study was the knowledge and expertise of this complex disease and surgical intervention that I brought to the study as a principal investigator. My experience providing care to this patient population during recovery as well as in the Provincial out-patient aortic centre provided invaluable insights of the care settings. This familiarity of the environment was invaluable and informed many logistical aspects of the study that were necessary for execution. One example includes my knowledge and awareness of the patients who had their elective surgery at another hospital; these patients all represented the TAAA sub-group. Because most TEVAR for TAAA is performed in elective circumstances, failing to include these patients in the clinical review would have resulted in failure to recognize the longer and more complicated recovery course faced by these patients as well as rate of mortality and the potential combined effects of pathology and biological sex.  Another strength of this study was the rigour of the chart review process used to identify individuals in the elective TEVAR population within the designated 10-year time-period chosen for this study. To ensure accuracy and completeness, I retained assistance from a health authority data analyst to search for individuals by ICD-10 codes. The use of ICD-10 codes to identify individuals in the population adds rigor because this coding system is maintained by the World Health Organization, is used for billing purposes, and provides an international standardized method to classify these patients. The iterative nature of the search, based on my knowledge of key terms to classify TEVAR, and the assistance of the data analyst helped to ensure all the patients within the Provincial aortic centre’s elective TEVAR population were identified.  For the small number of patients who had elective TEVAR at the secondary hospital site, I sought assistance from the CTAD Medical Director (involved in all cases), who identified the patients  124  from records kept in their private medical office. Overall, the attention paid to properly identifying patients in this population for data collection was a strength of this study.    The consistency of data collection for both the clinical review and the participant interviews is also a strength in this study. Because I solely undertook the review of patients for inclusion and exclusion, as well as the data collection for both the clinical review and the conducting interviews, this study benefitted from a standardized and rigorous approach to data collection. It was also important that I conduct all the interviews because this study was exploratory and although an interview guide was created to provide some structure, it was important to allow the participants to freely convey their stories. This allowed the interview questions to evolve organically over the course of the study and can increase the trustworthiness of the findings.  Although the 16 interview participants were also included in the clinical review, I avoided bias by assigning unique participant numbers for both the clinical review and for the interviews. By assigning different numbers based on the arm of the study, I could not easily review the interview participants clinical course before the interview and ask questions according to what I had collected about their clinical course, and subsequently, I could not review the clinical course following the interview which could have impacted the content analysis.   A final strength in this study was that the use of the less prescriptive ID approach permitted the revision of the study protocol to include the family members who contributed to the interviews when they accompanied the participants. The study protocol did not originally include hearing from the family members of patients however in most circumstances where family members were present, they were able to provide details and clarification of events shared by the participants. Many of the participants displayed difficulty recalling some of the events  125  they faced during the post-operative period. In these instances, the recollection and description of events by family members was helpful and contributed to my understanding of the recovery events. Overall, the recognition that family members could contribute valuable perspectives and adjusting the study protocol and seeking approval from the Research Ethics Board to include their accounts in the analysis further strengthened the findings and description of recovery from TEVAR.      5.7.2 Limitations  There are several limitations in this study that require acknowledgement and explanation. An important limitation is the sample of participants who were interviewed. Although the goal was to recruit diverse participants who would represent a theoretical sample with their wide variety of recovery experiences, the participants interviewed in this study represent a convenience sample. With a group of only 43 potential participants, and a positive participation response rate of 42% (18/43), the study may have been too restrictive in inclusion and exclusion criteria to allow for anything but a convenience sample. All the interview participants in this study reached a level of recovery that afforded them the capacity and willingness to participate in this study. Some of them did experience significant adverse events and complications. The recovery stories of patients who had debilitating complications which they succumbed to are not represented by this group. Inclusion of patient family members in the original sampling strategy for the interviews would likely have provided more details of the recovery experience.   Most of the participants interviewed for this study experienced an acute aortic dissection (75%), while only 25% had TEVAR for TAD related to atherosclerotic disease (DTA or TAAA). While the intent of qualitative research is not to generalize findings, the clinical review data pointed to potential differences in recovery based on pathology of TAD. Differences in length of  126  CSICU and hospital stay, as well as in complications and re-intervention rates suggest the patients treated with TEVAR for atherosclerotic aneurysms may have had a more arduous recovery. In contrast, the interviews shed light on the magnitude of the experience of having an aortic dissection which may have over-shadowed patient’s TEVAR recovery experiences. Of the remaining participants, it is unclear if they experienced an aortic dissection, and from the interviews it appears that only one participant had TEVAR for a TAAA and these patients appear to have different recovery then patients who have TEVAR for an aortic dissection. Therefore, the findings must be considered in relation to the participant’s pathology of TAD and their diagnosis experiences.     The retrospective nature of this study posed additional limitations. Participant’s TEVAR surgeries may have occurred four years prior to their interviews leaving them to rely on their memory of events, along with recognition and understanding of events to be able to include sufficient details. This became especially challenging for the participants who experienced multiple emergency and elective aortic surgeries as it was difficult for them to isolate recovery from the elective TEVAR within the inclusion time-period that made them eligible to participate. To mitigate this effect, in future research family members should be included in the interviews and they as well as patients should be interviewed in a time-period closer to their recovery experiences.  Along with including family members in the interviews, incorporating the perspectives of clinicians who provide care to patients during recovery would have also provided important data for this study. By interviewing healthcare providers (nurses, physicians, and allied health practitioners) I could have possibly uncovered more information about some features of recovery that were not recorded or easily found in the chart. Specifically, patients exhibiting signs of  127  fatigue, anxiety and depression are some examples of features that are not captured consistently.  Interviewing the professionals caring for patients during post-operative recovery would have added to and clarified important details to better understand this phenomenon.    Instead of interviewing healthcare providers, I relied on patient medical records as a source of data. With a study time frame spanning ten years, numerous healthcare providers had performed assessments and documented their findings in these medical records. For some, clinical notes were legible and thorough with detailed information providing ample support of a diagnosis of events such as post-operative delirium. In the medical records of other patients, limited data was available so without criteria beyond statement of the diagnosis in the narrative charting to determine if a patient had experienced an event or complication, I had to rely on the clinical acumen and documentation of a variety of healthcare providers. For the variable post-operative pain, there was a high rate of incompleteness which required the use of a proxy variable narcotic analgesia administration to indirectly report on patients’ pain levels. This is another example of the limitations of collecting data from patient medical records.    A final limitation of the study is not including a more complete follow-up of the patients from the clinical review after discharge. With most participants receiving care from one aortic centre, additional data collection using the clinic’s online medical records could have been planned. This data would have provided a more complete picture about what patients were experiencing in the first few months and year after discharge. Since there were only 16 interview participants, the other 90 patients had at home recovery experiences that I can not report on. Since it is evident that the recovery from elective TEVAR lasts well beyond the hospital stay, collecting data about the events experienced by the population by reviewing their clinic records  128  or with the use of surveys would provide more information about the entirety of the patients’ recovery periods.  5.8  Summary In summary, this study provides important insights into patient perspectives and experiences of recover from elective TEVAR. We have also learned what it is like to live with thoracic aortic disease as a chronic condition. The use of both clinical data from patient medical records and patients’ recovery stories provides a more complete picture of this phenomenon and identifies the limitations and in some instances deficiencies of relying on single source data to understand a complex clinical phenomenon. This study provides an opportunity for clinicians to broaden their views of this exciting, challenging and novel intervention of TEVAR outside of their context of comfort and recognize the changes, challenges, needs, and differences of the individuals who are referred to as “TEVAR patients”. The final concluding chapter of this dissertation will discuss what this study contributes to the evidence base, what can be learned from patients, and what future TEVAR research endeavours should look like and what they should include.    129  CHAPTER 6: CONCLUSION Disease of a supposedly utilitarian pipe that conveys blood to  a pantheon of organs engenders less interest or sympathy… (Svensson & Rodriguez, 2005 pp. 1082)  6.1 Overview  Patients describe recovery from elective TEVAR as a process occurring within the context of a highly specialized, life changing, chronic disease. For some patients, recovery is a fairly straight forward and time limiting event, and for others it is a physically and psychologically difficult and never-ending saga. While the technical challenges, knowledge, expertise, and resource demands needed for TEVAR have captured most of the attention, the unique care concerns and requirements of patients who undergo this surgery has received substantially less attention and consideration.  This aim of this work was to develop a comprehensive, patient centered description of post-operative recovery to help clinicians to better understand patient’s experiences and post-operative needs and to inform clinical practices to address those needs. I sought to answer the question, what are the post-operative recovery experiences of patients who have undergone elective TEVAR surgery, and specifically explore what patient factors were evident in their experiences of recovery and what perspectives and experiences could inform practitioners’ understanding of the recovery process?  By identifying the elective TEVAR patient population from one Provincial cardiovascular centre and collecting and analyzing their medical record data for pre-operative status, intra-operative and post-operative factors, I was able to determine that the hospital recovery course after TEVAR is dependent on TAD pathology, with differences between the  130  dissection and aneurysm groups, and that there are also possibly differences in recovery courses for men and women. The recovery typically involves blood transfusions, two-day ICU stay, and at least one week in hospital with the return of most basic functions (fully) by POD 4. Patients also experienced a myriad of serious and non-serious adverse events and complications that impacted their length of stay and the return of their physical functioning.  The long term, at home recovery experiences of patients were obtained from interviews within a small segment of the same TEVAR patient population. Their stories stressed the psychological impact of TAD and TEVAR, its impact on their recovery, and the needs of patients as they transition through specialist cardiovascular care, the acute care system and then to primary care. From the recovery stories of these patients, I developed themes related to the serious and frightening diagnosis experiences, vulnerability from having an obscure chronic illness and being on a life long, uncertain, unrelenting journey. These themes encompassed subthemes of identity change, loss, lack of understanding, reliance on others, relief, unexpected complications, and constant health maintenance. The findings from the physical acute, and at home psychological recovery journey showed the uniqueness of this particular patient population who undergo high risk surgery for a silent, insidious, and lethal disease. This makes the chronicity, recovery challenges, and vulnerability associated with TEVAR recovery difficult to bear. The findings from this study are not necessarily unique to the elective TEVAR patient population, but the context and circumstances in which they occur results in these patients needing comprehensive, life-long disease management from an aortic specialty team who facilitates and leads the patients through numerous transitions of care.   131  6.2  Key Findings   The key findings from this research are that patients recovering from elective TEVAR have unique needs evidenced by their duration of hospital stay, intricacies of the various aortic pathologies, chronicity of the underlying disease of TAD, and the ever-fluctuating state of transition experienced by these patients. This specialized patient population exhibits a significant level of chronicity both before and after elective TEVAR surgery, which is evident in the physical and psychological challenges they experience during recovery in-hospital and at home.   As well, some patients who have elective TEVAR surgery find themselves in a continuous cycle of transition. While some patients move from recovery to a steady state of chronic disease management, others experience interruptions during recovery and the need for reintervention. Unfortunately, this patient population is plagued with further disease progression, and acute aortic changes likely to require further surgical intervention. Therefore, transitions of care are crucial to ensuring patients are fully informed, prepared, and supported throughout the tumultuous journey of recovering from TEVAR and then living with TAD 6.3 Future Research    The exploratory nature of this study unveiled numerous potential avenues for ongoing research that would provide more evidence to improve the care and care experiences of patients with TAD who undergo TEVAR. To start, participants’ emphasis on their aortic dissection diagnosis experience highlights the need to better understand the impact of an aortic dissection to an individual’s well-being and quality of life. Focus group studies of patients transitioning with this new chronic illness would provide important information for clinicians as well as potentially provide peer support for patients.    132   Considering the rate of comorbidities in this elective TEVAR population, a study that more precisely measures pre-operative functional status, frailty, and psychosocial well-being prior to surgery with comparison to multiple post-operative time points would provide important information for clinical experts and policy makers about recovery trajectories of TEVAR patients. These studies would help in the creation of predictive models to assist patients and clinicians with informed decision making about timing and elective surgery. As well, current measurement tools used in larger cardiology and cardiac surgery populations could be tested for reliability and validity in the TEVAR patient population.   This study highlighted potential differences in recovery for patients based on TAD pathology. Future studies should include designs that allow for comparisons between groups to provide evidence to educate clinicians so they can individualize and tailor clinical care for patients during recovery.  Along with further exploration of differences in recovery by TAD pathology, future studies should also be aimed to better understand the relationship between biological sex and TAD pathology and how this relationship impacts recovery from TEVAR. With the abundance of research highlighting sex and gender-based differences in presentation and care for patients with coronary artery disease, future research should also thoughtfully include and account for biological differences and/or socially constructed gender roles for patients with TAD and who undergo TEVAR.  In this study, I developed a description of recovery from elective TEVAR by interpreting patients’ stories and reviewing clinical data. Unavoidably, this description is also influenced by my own experiences and views as a clinician and researcher, and patients were not asked to describe what ‘recovery’ meant to them. Therefore, future qualitative studies are needed to explore patients and families understanding of recovery, and its personal meaning to them. Since  133  recovery is both a process and end goal, it is imperative that researchers studying recovery and clinicians providing care explore and examine how patients conceptualize and define this phenomenon if it is to be used as a reportable indicator or outcome measure.  My experience as a clinician during this study also underscored the importance of understanding the healthcare environment and culture where recovery occurs. With more minimally invasive and highly technical surgeries being rapidly introduced, it is important to focus research attention on the healthcare providers and institutions where these interventions occur.  For example, an ethnographic study of the cardiovascular units that constituted the setting for this study would provide important information about the delivery of care during the initial recovery period that can dramatically impact the recovery experience. Hearing directly from clinicians who provide care in these settings would help to identify areas for improvement in care for patients with TAD.  Finally, the potential catastrophic consequences of untreated TAD points to the need for research aimed at identifying knowledge gaps and system related factors that continue to result in TAD being undetected and misdiagnosed. This research could add valuable information for early detection and screening within identified risk groups. As well, using both qualitative and quantitative methodologies can help to inform health promotion initiatives for patients with TAD or those at risk of developing it.    6.4 Implications for Nursing  The specialized care required by TEVAR patients is apparent from the results of this study and points to the need for thoughtful consideration of the setting where initial and long-term post-operative care should be provided. The small volume of patients who undergo TEVAR means decision making about setting, staff education, equipment and other resources will impact  134  the recovery experiences of patients. For this study, the setting was a large, provincial tertiary care centre where elective TEVAR volumes over ten years were just over 100 patients. When the emergency TEVAR patient population is included, the current yearly TEVAR case total still only results in three to four TEVAR patients per month at most. This low number means the development of proficient and expert quality care for TEVAR patients will likely occur at a much slower rate than other higher volume surgeries. In this study, the TEVAR patient population is cared for in a cardiac surgery setting. While a cardiac surgery program and their staff are well equipped in arrhythmia management and hemodynamic monitoring, endovascular recovery considerations such as gastrointestinal ischemia monitoring, and arterial access site care, and paraplegia prevention underscores the need for TEVAR specific recovery pathways to ensure adequate care.    The importance of considering TEVAR within the context of a chronic cardiovascular disease also requires attention to the long term supports and care needed by TEVAR patients and their families for the duration of their lives. The participants described their need for more information and support from the aortic specialty team as well from their primary care providers.  Since the complex and specialized nature of TAD and TEVAR often results in other healthcare providers having difficulty fully understanding the disease and surgery it is imperative that primary care providers receive education, adequate correspondence and communication with the specialty team and have a more active role in care and treatment planning.   Some of the interview participants demonstrated a concerning lack of knowledge about their TAD and TEVAR surgery which highlights the need for better education and communication between the patients and families and the aortic teams and primary care providers  during the pre-operative and post-operative periods. Information sharing by aortic  135  team specialists and education for the non-aortic specialist would help ensure more seamless transitions of care for patients from hospital to home.  Since TAD is a chronic disease, it is imperative that the patient’s primary care provider is knowledgeable of the disease and treatment plan since they will play an active role in providing the long-term care patients require. The specialized and complex nature of TEVAR should be extended beyond the operating room and include patient and family education, and a coordinated and comprehensive care pathway with multiple points of communication and interaction.   Participant’s recovery stories also included important details about the psychological  dimensions of recovery, yet the patient medical records lacked details about depression, anxiety,  fatigue, insomnia, and persistent pain experienced by patients while in hospital recovering. The incorporation of assessment tools and the regular screening of patients after surgery can help to ensure those at risk are identified and then provided the appropriate supports. More attention to the psychological dimensions of recovery will ensure that patients are receiving holistic, patient-centered care.    Finally, the specialized care needs of patients with TAD (whether they undergo TEVAR or not) was evident in the diagnosis, management, surgical treatment, and recovery phases of this chronic disease. The insidious nature of TAD can easily result in patients avoiding the health maintenance this disease requires to ensure the risk of a lethal event is mitigated. The disease management burden of TAD provides an opportunity for advanced practice nursing, and leadership to support patients with education, facilitate communication and knowledge amongst patients, families, and providers, and assist patients with coordinating long-term follow-up. The vulnerability of TAD and TEVAR patients also presents opportunities for nurses to use advocacy to ensure patient centered and holistic care is provided to patients. The important role of nursing  136  was evident during data collection for the clinical review, where I relied heavily on the documentation of functional health and recovery progress by nurses to understand the path of recovery from elective TEVAR according to the dimensions of recovery. A designated nursing role with a specialty in cardiovascular disease and TAD could improve the care experiences of patients as Haakseth et al. (2019), mention how nurses designated to help patients navigate through the physical and psychological effects of a life-threatening diagnosis, complex surgery, and chronic cardiovascular condition can improve the care and experiences of patients.  6.5  Recommendations  The findings from this study have provided evidence to substantiate recommendations for the care of patients with TAD who have, or who will undergo TEVAR. These recommendations span the continuum of care which patients transition through along their lifespan once diagnosed with TAD. These settings include acute care hospitals, out-patient specialized cardiovascular clinics, and in community primary care centres. Specific recommendations include the following: 6.5.1  Acute Care Setting Recommendations The experiences of diagnosis following an aortic dissection described by several interview participants supports the recommendation for a specific clinical pathway for this population. This pathway should guide HCPs in their education, assessment, and communication with the aortic specialty team to coordinate follow up between care providers and support a more seamless transition home following an acute aortic dissection.   The relatively small number of elective TEVAR patients has often resulted in the adaptation of clinical care pathways designed for larger cardiovascular patient populations (such as CABG and valve surgery patients). This research emphasized the need for specific post- 137  operative TEVAR clinical pathways to consider their unique recovery courses and more easily identify when patients require additional attention or support. A clinical pathway inclusive of the post-discharge period is also essential to assist patients and families to better prepare for discharge, gauge progress, and facilitate communication and contact by the aortic specialty team. The complications occurring after discharge and described by the interview participants underscores the need for multidisciplinary care conferences between allied health, medicine, and nursing with clear and expedient reporting to primary care providers prior to discharge. This sharing of information and collaboration between HCPs in acute care, specialty out-patient aortic clinic and primary care will help to ensure that patients are under an informed and watchful eye following discharge from hospital.   6.5.2 Specialty Out-Patient Aortic Clinic Recommendations  Recommendations for the specialty out-patient aortic clinic includes better coordination and communication with patients to possibly decrease patient vulnerability and the burden they face in their chronic disease self-management. Specialty clinics need to develop psychological and functional health assessment protocols to be performed in the pre-operative period to determine baseline status and in the post-operative period to better assess progress of recovery and identify when additional supports are needed.  The specialty out-patient aortic clinic should also facilitate regular follow-up phone calls and or virtual/telehealth visits with patients within two weeks of discharge from hospital after an aortic dissection and after TEVAR surgery to support patient to adapt to changes in their health status. Supporting patients should also include the aortic specialty clinic facilitating patient group visits to assist with rehabilitation activities such as exercise, blood pressure management and  138  symptoms monitoring. These group visits would also promote peer support networking between patients with this unique lived experience.  6.5.3 Primary Care Recommendations  Finally, some recommendations for primary care settings to help meet the needs of patients with TAD who have undergone elective TEVAR.  Primary care providers (PCPs) should seek out educational opportunities through connection with the specialty aortic centers to address any specific learning needs about TAD disease management. Since PCPs often provide care to entire families, suspicion of TAD should warrant low risk diagnostic screening of family members to rule out familiar TAD or those with risk factors or symptoms. Patients should have full access to all PC medical records and diagnostic test results so they can be active partners in the coordination of their care with specialty services. Finally, patients in this study experienced missed or delayed diagnosis of aortic dissection which underscores the need for enhanced education for PCPs, as well as public awareness campaigns and education of disease of the aorta, the familiar links and the risk factors.  6.6 Conclusion This study is unique in that it brings to the forefront the voices of patients and their experiences of recovery after elective TEVAR. This glimpse into their personal experiences of recovery underscores the deficits in clinician’s understanding of recovery as a process within the larger context of an illness. The patients I interviewed clearly conveyed that they were looking for recovery from TAD and not just TEVAR, and it is apparent that HCPs view TEVAR as an isolated, acute, episodic event. This discrepancy means patients and HCPs conceptualize recovery differently and it is likely that current recovery care plans are not patient-centered and are inadequate in meeting their needs. This also means that the indicators used to measure  139  TEVAR outcomes and successful recovery are likely more provider centered than patient centered.  To my knowledge, there are no other studies that have examined the recovery experiences of patients after elective TEVAR in this way. This two-part story of recovery includes the acute clinical chapter most familiar to healthcare providers, and adds the chronic, psychologically based chapter of the lived experience most familiar to patients. 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Doi: 10.1583/12-4107R.1     155  Appendix A:  The Thoracic Aorta      Adapted from Image:AoDissekt_scheme_StanfordB.png, made by Jheuser, based on image:gray621.png and image:Fetal_circulation.png from Gray’s Anatomy  https://commons.wikimedia.org/wiki/File:AoDissekt_scheme_StanfordB_en.png  156        Appendix B: BC Ministry of Health – Patience Centered Care Framework (2014)                                  The British Columbia Ministry of Health (2015)       Appendix C: Telephone Script for CTAD Administrative Assistant  Recovery after Elective Thoracic Endovascular Aortic Repair: An Exploratory Study of Patients’ Experiences. Telephone Contact Script   The following script is for the administrative assistant at the Centre for Thoracic Aortic Disease. The Co-I will identify potential participants who were sent the study package but who have not responded. The AA will telephone these individuals 3 weeks after postage of study information package for Part 2 of the study to determine that they have received the study information package.   "Good morning/afternoon Mr. or Mrs. ___________. I am the administrative assistant at the Centre for Thoracic Aortic Disease. Three weeks ago, I posted a study information package to all my clinic patients who had elective TEVAR surgery since 2008. This study is being conducted by a PhD student at the UBC School of Nursing and it is supported by my clinic. I am calling to see if you have received the study information package in the mail. If you have not received a package can I confirm your address and send you another one? Thank you for your time.           158  Appendix D: Consent Form   Recovery after elective thoracic endovascular aortic repair: An exploratory study of patients' experiences CONSENT FORM  Principal Investigator:    Co-Investigator:       Dr. Bernie Garrett - Associate Professor  Dr. Alison Phinney - Professor UBC School of Nursing    UBC School of Nursing       Co-Investigator:      Co-Investigator: Ms. Priscilla Taipale - PhD candidate  Dr. Sandra Lauck - Assistant Professor UBC School of Nursing    UBC School of Nursing        Dear Potential Research Participant:  We are inviting you to participate in this study because you had planned thoracic endovascular aortic repair (TEVAR surgery) at Vancouver General Hospital or St. Paul’s Hospital between January 1, 2008 and December 31, 2017. We would like to interview you about your experience recovering from this surgery.   What is the purpose of this research? The purpose of this research is to learn about the recovery experiences of individuals after planned thoracic endovascular aortic repair (TEVAR) surgery. Learning about patients’ experiences will give healthcare providers a better understanding about recovering from TEVAR after discharge from the hospital. We are inviting people to take part in interviews with a member of the research team to share information about their recovery experiences.   Who is undertaking this research and who is funding this study? This study is being done by Priscilla Taipale a Registered Nurse and graduate student at the UBC School of Nursing. This study is part of her Doctor of Philosophy degree at UBC. The funding for the study comes from the UBC School of Nursing Helen Shore Nursing Endowment Fund.   What am I being asked to do? Participating in this study involves reading the study material (approximately 20 minutes) and taking part in a 45 minute to 1-hour interview with a member of the research team. During the interview you will be asked several questions about your health and the activities you could do in the days, weeks and months after your TEVAR surgery. For example, you may be asked about how much energy you had and what activities you were able to do after surgery. The interview can be in person or via telephone. It will be in a quiet and private place on a day and time that works best for you. If in person, you may choose to be interviewed in your home. With your permission, we will record the interview for accuracy. When the research team analyzes the data, we may ask for your feedback which may take an additional 30 minutes of  159  your time. You will be contacted via email or telephone with information about the key themes found by the research team during analysis. You can provide your feedback of the results either over the phone or by email. We will also ask you to fill out an information sheet about your age, gender, occupational status (now and during surgery) as well as information about your aortic disease. This information will be used give a general description about the people who participated in the study.  Results of the research The results of this research will be shared with other researchers, health care professionals, and members of the general public. We plan to publish the results in an academic journal and present the results at a conference for researchers and health care providers. We also want to share the results with you, and we will send a final summary of the results to all participants.   What are the potential risks of taking part in this research? Answering the interview questions may mean sharing medical information with the research team and you may lose privacy. However, you can decide how much you are willing to share about your experiences.   What are the potential benefits of taking part in this research? There may not be any direct benefit to participating in this research. You may find that sharing your experiences is enjoyable and/or you may find satisfaction in contributing to new knowledge that may help other patients.   What happens if I want to withdraw from the study? If at any time you change your mind about participating, you can withdraw and there will be no negative consequences to you, your family, or your health care. If you withdraw, transcripts of your interview will be destroyed and removed from analysis where possible. If you withdraw and your data has already been combined with data from other participants, it may be impossible to remove your contributions.   Confidentiality The recording of your interview will be transcribed into writing and members of the research team will see this transcript. The transcript will be anonymous and all information that could identify you will be removed or changed. You will not be identified by name in any reports or presentations of the completed study. Information that discloses your identity will not be released without your consent unless required by law.  All study materials will be stored in a locked filing cabinet in the cardiac surgery intensive care research office. This filing cabinet is only accessible by the Co-investigator of this research study team (Priscilla). The research office is locked and only accessible by two other staff members for research purposes. All electronic files will be encrypted, and password protected.   Who can you contact if you have questions or concerns about this research?  160  If you have any questions about this study, please contact the principal investigator or one of the co-investigators. The names and telephone numbers are on the first page of this form.  If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this study, contact the Research Participant Complaint Line in the UBC Office of Research Ethics at 604-822-8598 or if long distance email RSIL@ors.ubc.ca or call toll free 1-877-822-8598.   Participant consent and signature Taking part in this study is your choice entirely. You have the right to refuse to participate. If you decide that you would like to take part, you can change your mind and end your participation at any time without giving a reason and without any negative impact to any future care you will receive.   • Your signature indicates that you consent to participate in this study. • Your signature indicates that you received a copy of this consent form for your own records.   __________________________________________________________________ Participant Signature                  Date   __________________________________________________________________ Printed Name of the Participant signing above   ☐ Yes, I consent to the audio recording of the interview ☐ Yes, I consent to being contacted to review the preliminary results and provide feedback          161  Appendix E: Interview Guide Questions  Semi-structured Interview Guide  1. Tell me how your experience with thoracic aortic disease requiring TEVAR all started.  2. How would you describe life before your elective TEVAR surgery? 3. What do you remember about your experience in the hospital after your elective TEVAR operation? 4. What do you remember about your experience being discharged home after surgery? 5. Tell me about your mood and how you felt when you were at home recovering? 6. What was your daily routine when you returned home after your surgery?  7. Describe what you could do when you came home from the hospital? (what did a typical day look like)? 8. How would you describe your life now? 9. What was your appetite and eating like when you were recovering in the hospital and at home? 10. Describe your physical activities the first month after your surgery?  11. Describe your social activities in the first month after your surgery?  12. What would you share with other patients who are awaiting elective TEVAR?  13. What do you want the healthcare team to know?        162  Appendix F: Clinical Review Data Collection Tool  Data Collection         Age:                        Sex: M  F Marital Status: Married    Single    Divorced    Widowed  Home distance from TEVAR hospital:                    Current smoker (in 30 days) Ex-smoker   < 100 km   100 – 400km    > 500km   Diagnosis:    Descending thoracic aneurysm   Thoraco-abdominal aneurysm  Type A aortic dissection    Type B aortic dissection  Intramural hematoma    Marfan    Elers Danlos      Loey’s Dietz     Aortopathy      Family history of TAD Situation surrounding diagnosis:  Diagnostics for other illness Diagnostics in preparation for other surgery Diagnostics due to emergency room visit Diagnostics ordered due to familial TAD Other: ________________________ Symptoms: Spontaneous chest pain  Mid scapular back pain  Abdominal pain  Claudication Other _____________________ ASA score:________  NYHA score: ________ Ejection Fraction:_______ CCS class: _______ Height:_________        Weight:__________ Number of Antihypertensive agents: _________ Other surgeries (not cardiac or aortic):   Comorbidities history as indicated on aortic surgeon consult notes, and anaesthetic record:  Cardiomyopathy  Coronary artery bypass grafting  Date 1  Date 4  Time 1  Time 4  Date 2  Date 5  Time 2  Time 5  Date 3  Date 6  Time 3     163  Percutaneous coronary intervention  Aortic valve surgery  mitral valve surgery  Myocardial infarction Ascending aortic replacement Atrial Fibrillation    Previous TEVAR Pacemaker  Previous EVAR  Transient ischemic attack  COPD (as per aortic surgeon consult notes)   Cerebral vascular accident  Asthma   Diabetes:   Insulin    Non-insulin Renal failure requiring dialysis Obesity (BMI > 30 as per Heart & Stroke)   Renal failure (GFR <40)  Anemia (hemoglobin <100) Other:  Intra-operative:  Type of surgery: _________________________________________________________________ Additional interventions:  __________________________________________________________ Clinicians:  Cardiac surgeon   Vascular surgeon     Interventional radiology  Endovascular grafts:     Cerebral spinal fluid drainage   Intra-operative spinal monitoring (IOM)    Loss of IOM signals   Arrhythmia    Aortic dissection    Aortic rupture    Vessel injury     Transfusion of red blood cells   ___________  Post-operative events: Cerebral vascular accident Femoral or iliac artery injury Requiring high flow 02 Leg weakness (requiring intervention)   Hematoma to groin site Re-intubation Paraparesis or paraplegia Retrograde aortic dissection Pulmonary embolism Low cardiac output (requiring inotropes)   Return to OR Pleural effusion Arrhythmia   Urinary tract infection   Myocardial infarction Surgical site infection  Renal failure: dialysis required  Gut ischemia  Renal failure (GFR <50)  164  RBC transfusion(s) required Sepsis (as per bloodwork)  Dysphagia (modified diet)  Required platelet transfusion  Endoleak   POD 1 - 7 Date:  Drug Totals PAIN Pain scores recorded Y         N  Average pain score:  Highest pain score:                                                                                             Hydromorphone IV   Morphine IV    Hydromorphone PO  IR  ER   Oxycodone PO  IR  ER   Tylenol # 3    Other   ORAL INTAKE Antiemetic:  Dimenhydrinate    Ondansetron    Other:   NPO  Clear Fluids  Full Fluids  Regular diet  Date & Time: ACTIVITY & REST Bedtime sedation: Y     N                                                                                              Medication: Amount:  Independent ambulation Y     N         Date & Time ambulation started:  ELIMINATION Foley catheter:   Y     N  Removal date/Time:                                                                                       Bowel movement:    Y     N     Date & Time:  MENTAL HEALTH STATUS Delirium:    Y     N           Psychiatry consult Y     N                                             Loxapine/Quetiapine started  Y     N          ADVERSE EVENTS:   Other:      165  Total amount of blood products given:   RBC__________  Platelets__________  Plasma___________  Discharge medication :   Hemoglobin__________ Creatinine ___________  GFR____________ Abnormal blood work on DC:  Duration of surgery:  Duration CSICU stay:  Total post-operative LOS:  Transfer to other service at VGH:  Yes    Date:   Discharge Disposition:  home   rehab facility   other Hospital    died in hospital    Data collected by:        Date:        


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