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Exploring issues of identity for adult haematology oncology patients Stephens, Jennifer Marie Lior 2018

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i   EXPLORING ISSUES OF IDENTITY FOR ADULT HAEMATOLOGY ONCOLOGY PATIENTS    by  Jennifer Marie Lior Stephens  B.S.N. (Nursing), Washington State University, Spokane, Washington, USA, 2007 A.D.N. (Nursing), Portland Community College, Portland, Oregon, USA, 2005 M.A. (History), Portland State University, Portland, Oregon, USA, 1998 B.A. (History), University of Colorado, Denver, Colorado, USA, 1995 B.A. (Anthropology), University of Colorado, Denver, Colorado, USA, 1995  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)  April 2018  © Jennifer Marie Lior Stephens, 2018   ii  Abstract  Caring for adult haematology cancer patients can be challenging, and the difference in experience between this cancer subgroup and solid tumour cancers is only recently becoming a topic of investigation as researchers seek to identify and understand fundamental biological and psychological dissimilarities. The issue of identity is one that is of intense consequence for many cancer patients as they move from one state of being to another. This qualitative study was undertaken to generate knowledge about this important concern in a way that would ultimately inform an understanding of how to improve the patient experience of care with regards to identity concerns.  Interpretive description served as the methodological framework which guided a data collection and analysis strategy composed of five consecutive layers. Secondary research included a critical integrative literature review, a historical inquiry, and a secondary analysis of a pre-existing qualitative database. Primary research was composed of semi-structured interviews undertaken with a haematology oncology patient cohort as well as semi-structured interviews with experienced oncology clinicians.   Findings revealed that adult haematology oncology patients co-create and enact new identities that are increasingly aligned with a distinct experience defined specifically by their cancer subtype. Pre-existing identity labels and associated behaviours and expectations generally were viewed by patients as inadequate to fully describe and inform their experience of having a haematological cancer. Knowledge-gathering, linking with others who had similarly unique diagnoses down to a genetic level, and exploring the abstract cellular nature of their disease were just some of the themes that addressed ways these patients engaged with the highly complex and embodied construct known as identity. Several implications for clinical practice resulted from this study and include the importance of recognizing identity as simultaneously a physiological and psycho-social concern that will mean different things to different people at different times in the course of their disease. Implications for further research include advocating for theoretical and substantive knowledge development around identity constructs to generate further understanding of the deeply-rooted, textured relationship between identity and overall well-being.   iii  Lay Summary  Caring for the complex psychosocial and physiological needs of adult haematology cancer patients is demanding. This study explored issues of identity for haematology cancer patients through a multi-layered qualitative study aimed at generating knowledge and novel understandings. Three consecutive layers of foundational secondary inquiry informed primary research with patients and experienced oncology clinicians. By thoughtfully investigating this phenomenon from multiple perspectives, this study accentuated the significance and complexity identity has within the transformative nature of the haematology cancer experience. In considering how identity can be experienced by haematology cancer patients, the findings of this study highlighted multiple opportunities clinicians might utilize to provide more deeply informed care. The implications of these findings include the need for future studies aimed at more fully examining diverse aspects around the relationship identity has with both physiological and psychological well-being.  iv  Preface  This dissertation is an original intellectual product of the author, J. Stephens. The fieldwork reported in chapters 7-8 was covered by UBC Ethics Certificate number H15-01335.   v  Table of Contents  Abstract .....................................................................................................................................ii Lay Summary ..........................................................................................................................iii Preface .....................................................................................................................................iv Table of Contents .....................................................................................................................v List of Tables ............................................................................................................................x List of Figures ..........................................................................................................................xi List of Abbreviations ..............................................................................................................xii Acknowledgements ...............................................................................................................xiii Dedication ..............................................................................................................................xiv  Chapter 1: Introduction to the Study ..................................................................................1  Introduction ...............................................................................................................1  The Literature ............................................................................................................4  Rationale for Inquiry .................................................................................................5  Research Questions ...................................................................................................8  Research Design and Methods ..................................................................................9  Defining Key Terms ................................................................................................11  Significance of the Study ........................................................................................13  Summary .................................................................................................................16  Chapter 2: Theoretical and Methodological Framework ..................................................17  Methodological and Philosophical Orientations .....................................................17 Theoretical Scaffolding Existentialism, Phenomenology, and Spirituality ............21 Existentialism ...............................................................................................21 Phenomenology ............................................................................................22 Spirituality ....................................................................................................24 Summary .................................................................................................................25  Chapter 3: Research Design ..............................................................................................26 Introduction ............................................................................................................26 Theoretical Background for Research .....................................................................26 Review of Research Question and Overarching Design .........................................27 vi  Plan for Data Collection and Analysis ....................................................................28 Phase One: Secondary Research .............................................................................32 Layer 1: Integrative Literature Review .........................................................33 Layer 2: Historical Inquiry ............................................................................34 Layer 3: Analysis of Existing Database (Secondary Analysis)......................36 Summary: Phase One ....................................................................................37 Phase Two: Primary Research ................................................................................37 Layer 4: Interview with New Patient Cohort ................................................38 Recruitment of Participants .................................................................39 Interview Techniques ..........................................................................40 Data Management ...............................................................................42 Layer 5: Thoughtful Clinician Interviews .....................................................43 Sampling Strategy ...............................................................................44 Interview Technique ...........................................................................45 Phase Two: Supplementary Strategies for Data Collection ..........................45 Self-Reflective Journal (Field Notes) .......................................45 Narrative Development and Analysis .......................................46 Collateral Data ..........................................................................47 Data Analysis ..........................................................................................................48 Issues of Qualitative Rigor .....................................................................................49 Oncology Clinician Interviews ..................................................................49 Issues of Qualitative Validity and Credibility .........................................................50 Ethical Considerations ............................................................................................51 Procedural Ethics ................................................................................51 Relational Ethics .................................................................................52 Exiting Ethics ......................................................................................53 Possible Limitations of this Research  ....................................................................53 Summary .................................................................................................................54  Chapter 4: Critical Integrative Research Literature Review (Phase 1, Layer 1) ..............56 Introduction ............................................................................................................56 The Review ...................................................................................................56 Purpose .........................................................................................................56 Definitions ..............................................................................................................57 Rationale .................................................................................................................58 Search Methods ......................................................................................................59 Inclusion Criteria ..........................................................................................61 Procedure ......................................................................................................62 Search Outcomes ....................................................................................................63 Synthesis .......................................................................................................63 Results ....................................................................................................................63 Diverse Definitions of Identity .....................................................................64 Predetermined Identity Labels: Focus on Survivorship ...............................66 Temporal Nature of Identity .........................................................................68 Identity Reconstruction ................................................................................69 vii  Physiology as Identity ..................................................................................69 Generalized “Cancer” ...................................................................................70 Discussion ...............................................................................................................71 Potential Knowledge Gaps .....................................................................................73 Review Limitations .................................................................................................76 Conclusion ..............................................................................................................77   Chapter 5: Historical Inquiry (Phase 1, Layer 2) ..............................................................79 Introduction.............................................................................................................79 Method ....................................................................................................................80 Finding Haematological Cancers in the Literature .................................................81 Characteristics of Haematological Cancers ..................................................82 An Early History of Cancer ....................................................................................84 Early Treatments for Cancer ........................................................................87 Bloodletting ........................................................................................87 Non-Western Traditions ...............................................................................88 The Cellular Revolution and Descartes, 1500’s to 1700’s .....................................89 Social History ...............................................................................................91 The Birth of Haematological Cancer: The 19th Century .........................................92 Cellular Cancer versus Solid Tumour Cancer ........................................................93 Causes for Cancer: Nineteenth Century Opinions ........................................96 Indications of Haematological Cancer ..........................................................99 The Anemia Connection .....................................................................100 The Spleen Connection .......................................................................101 The 20th Century: Modern and Post-Modernism.....................................................102 The Rise of Chemotherapy .........................................................................105 The “Cancer Personality” ...........................................................................108 The Postmodern Cancer Identity: Man is Cellular .....................................112 The Rise of the Cancer Self ..............................................................113 Transplantation and Biotherapy ..................................................................115 A Brief Intellectual History of the Self ............................................................... 117 Discussion: Historical Implications for Cancer Identity ......................................122 Cancer as a Person .....................................................................................124 Person as Own Cause for Cancer ...............................................................125 Blood as Vitalism .......................................................................................126 Somatization and the Cancer Body .............................................................127 Summary and Application ....................................................................................128  Chapter 6:       Secondary Analysis of an Existing Database (Phase 1, Layer 3) .................129   Introduction ..........................................................................................................129 Background to the Research Strategy ...................................................................129 Methods ................................................................................................................131 Dataset ........................................................................................................131 Subset Sampling and Inclusion Criteria .....................................................132 viii  Methodological Considerations ..................................................................134 Findings ................................................................................................................136 Self with Cancer .........................................................................................136 The Abstract Self ........................................................................................138 The Suffering Self .......................................................................................142 The Disconnected Self ................................................................................144 Discussion .............................................................................................................146 Moving Forward ...................................................................................................151  Chapter 7:  Haematology Oncology Patient Interviews (Phase 2, Layer 4) ...................153  Introduction ..........................................................................................................153 Sample Description ...............................................................................................153 Method ..................................................................................................................156 Developing the Interview Guides ...............................................................157 Data Analysis ..............................................................................................160 Findings ................................................................................................................160 Origination: Mask of Sick ..........................................................................161 Transformed Identity ........................................................................162 Uniqueness ........................................................................................165 Cancer as Systemic ...........................................................................168 Deconstruction: The Disintegrating Self ....................................................171 Unawareness ..................................................................................172 Abstractification ............................................................................174 Personification ...............................................................................179 Reconstruction: The New Normal...............................................................182 Regaining Control .........................................................................182 Overcoming Vulnerability .............................................................186 Discussion..............................................................................................................190 Conclusion ............................................................................................................192  Chapter 8: Haematology Oncology Clinician Interviews (Phase 2, Layer 5) ................194 Introduction ..........................................................................................................194 Sample Description ...............................................................................................195 Method ..................................................................................................................196 Developing the Interview Guides ...............................................................196 Data Analysis ..............................................................................................198 Findings ................................................................................................................199 Origination: Timing is Everything ..............................................................200 Deconstruction: A New Full-Time Job .......................................................204 Reconstruction: Finding that New Normal .................................................210 Discussion .............................................................................................................213 Conclusion ............................................................................................................218  ix   Chapter 9:  Discussion ....................................................................................................219 Introduction ..........................................................................................................219 Review of the Layered Findings ...........................................................................220 Discussion: Finding Identity as a Haematology Cancer Patient ...........................223 The Embodied Nature of Cancer ................................................................224 Disidentifying with Solid Tumour Cancer..................................................228 Fashioning a Cellular-Based Cancer Identity .............................................231 Summary ...............................................................................................................239  Chapter 10: Conclusion ....................................................................................................240 Introduction ..........................................................................................................240 Reflections on Strengths and Limitations .............................................................240 Implications for Future Research ..........................................................................243 Implications for Nursing Practice .........................................................................246 Concluding Thoughts ............................................................................................251  References .............................................................................................................................252 Appendix A: Criteria for Inclusion/Exclusion for Primary Data Collection ......................306 Appendix B:    Sample Questions for Initial Interview (Participant Interview) ...................308 Appendix C:  Sample Questions for Initial Interview (Clinician Interview) ......................310 Appendix D:  Information and Consent Form (Patient Participant) ....................................312 Appendix E:   Information and Consent Form (Clinician Participant) .................................317 Appendix F:   Research Articles Used in the Critical Integrative Literature Review ….......322     x  List of Tables  Table 1: Demographic Qualities of the Matched CCC Database Subgroups ...................... 133 Table 2: Demographic Qualities of the Haematology Oncology Patient Participants ..158-159 Table 3: Demographic Qualities of the Haematology Oncology Clinician Participants ......196   xi  List of Figures  Figure 1: Layers of Methodological Inquiry ……………………….....…………………..…29 Figure 2: Multi-Layered Data Collection Process ……....………………………………..…30     xii  List of Abbreviations  BCCA:  British Columbia Cancer Agency BC L/BMT: British Columbia Leukemia/Bone Marrow Transplant Program BMT:   Bone Marrow Transplant CCC:   Refers to the UBC Communication in Cancer Care Database GVHD: Graft-versus-Host Disease  HM:   Haematology Malignancy HSCT:  Haematopoietic Stem Cell Transplant ID:   Interpretive Description LLS:   The Leukemia and Lymphoma Society UCBT: Umbilical Cord Blood Transplantation    xiii  Acknowledgements There is nothing I can ever to do repay the kindness, generosity, patience, understanding, professionalism, support, and mentorship of my supervisor, Dr. Sally Thorne. I always believe the universe sends me the people that I need to meet, and the fact that Dr. Thorne was brought into my life by a staggering chain of serendipitous events is nothing short of a miracle. I feel an overwhelming sense of hopelessness in even attempting to repay or thank Dr. Thorne because I know there is nothing, nothing I can do that will even come close. Sally, thank you.  My deepest appreciation extends to my supervisory committee: Dr. Rick Sawatzky, Dr. John Oliffe, and Dr. Geertje Boschma. Each provided timely, critical, and highly useful feedback. No one gave up on me despite the long and convoluted journey. I am very thankful and privileged to have had the opportunity to work with each one of you.   Many thanks and tremendous gratitude are owed to my family who spent countless hours consoling, babysitting, and commuting in order for me to see this dream achieved. To Michael, Thornley, and Liorah – wow. To my mother, Peggi Schuller and sister, Kristy Johnson, the greatest of thanks for an unwavering willingness to do everything and anything that needed to be done. To our special babysitters, Sydney Coates and Alyx Harwysh, your willingness to play Legos and hide-and-seek gave me the extra time I needed to bring this project to completion. To my dear friends and colleagues who have really demonstrated how they are outstanding nurses and the kindest of companions, thank you for letting me bug you about my research. Allow me to add a special commendation for the special cohort who offered their expertise and willingness to support identity as an important topic of inquiry: Tara W., Nathalie B., Sharon P., Rhena M., Joan S., Rebecca P., Cindy M., Tracy T., Ande A., Nancy H., and Susan J.  Thanks to my clinician colleagues with the Leukemia/Bone Marrow Transplant Program of British Columbia for their support of this study, and especially Kristina Millar and Oi Man Chan for their assistance with recruitment. My deepest appreciation extends to Sharon Paulse (formerly of the Leukemia and Lymphoma Society) as an enthusiastic recruiter and advocate for psychosocial research. And a final thanks to Tricia MacDonald for transcribing most of the interviews. xiv  Dedication I am privileged to have been called to service in a profession that is frustrating, challenging, rewarding, chillingly honest, and amazingly awesome. This dissertation is dedicated to the fourteen generous spirits who kindly shared their intimate thoughts and life journeys with me.    1  Chapter 1: Introduction to the Study Introduction  Cancer forces an encounter with mortality that can be life transforming. On average, over 565 Canadians are diagnosed with cancer every day (Canadian Cancer Society Advisory Committee, 2017).  The emotional and psychological burden confronting the cancer patient is something researchers attempt to illuminate in the face of increasingly complicated treatment strategies, wavering social support systems, and an overburdened health care system. The demand for simplification in a complicated world faced with increasing numbers of cancer patients encourages a generalization of many disease types into one: cancer.  The trend in nursing, as in other health care disciplines, has been to either lump cancers under the umbrella “cancer,” or to specialize cancers into their tissue of origin.1 An accepted practice within the clinical oncology community is to classify oncology diagnoses into two general patient populations: solid tumour and haematological malignancies (HM) (Hui et al., 2014; Hui et al., 2015). According to the Leukemia and Lymphoma Society of Canada (2016), there are 137 types of blood cancer and related disorders including leukemias, lymphomas, multiple myeloma, and different myelodysplastic disorders and neoplasms. A new blood cancer patient is diagnosed every 23 seconds in Canada, and there has been a 25% increase in the number of people living with blood cancers between 2014 and 2016 (LLS, 2016). These statistics make research on these complex diseases imminently essential to improve quality of life and promote deeper understanding of the blood cancer experience.   This dissertation focuses on adult haematology oncology patients in order to explore and analyze their cancer experience through the lens of identity.2 Identity for the purpose of this dissertation will be defined broadly as “the condition or character as to who a person or what a thing is; the qualities, beliefs, etc., that distinguish or identify a person or thing”                                                           1 The Oncology Nursing Society web bookstore offers site-specific nursing care plans for solid tissue cancers including pancreatic, breast, skin, and prostate. Haematological cancers such as leukemia and lymphoma are not represented in this booklist, perhaps because they are a little harder to classify and perhaps because their course of treatment is significantly different than other types of cancer. They are not ‘site specific.’   2 Following traditional service categorization in Western health care models, the term “adult” will refer to patients who are age 18 and over. 2  (identity, n.d.).  In this work I reflect on work done by Parnas and Sass around the impact of disease on the self. They maintain that the self is constituted by experience, and that disease significantly disrupts this experience and thereby threatens the self in its existence (2011). Yuan (2012) poignantly exclaims in a guest editorial that the relationship between the science of oncology and the human patient entering care creates a natural divisive gap that requires recognition of the patient’s former, and new, self-identity. Both lay and academic literatures corroborate that cancer patients may assume different and unique identity transformations as part of the disease trajectory. There exists a copious amount of literature on disease identity within the context of the social sciences. Associated with the notion of identity are concepts such as embodiment, body image, and self-esteem. Body image is particularly widely investigated by health care researchers in relation to cancer. Flanagan and Holmes (2000) detailed that social norms around cancer associate it with fear, dread, and stigma within both lay and academic literature. One of their findings was that:  Cancer can be seen to threaten personal identity in a variety of ways. Cancer not only  impacts upon the identity of the person with cancer but extends, on occasions, to  respondents’ social contacts who perceive cancer as threatening their own identities.  (p.745) Identities that were once received automatically, for example through social positions, now become deliberate constructions. Identity is no longer a stable core which resides within an individual, but a series of identities formed reflexively through conscious examination and continual reformation of self-narrative. Self-identity and the body become “reflexively organized projects” (Shilling, 1993). Research has suggested that notions of identity may play an important role in how patients make treatment decisions and in how medical staff can address individual concerns (Slatman, 2012).  The impressive volume of identity literature confirms its legitimacy as a field of inquiry for many disciplines including medicine, psychology, medical anthropology, and sociology. To talk about identity is to discuss specifically what makes a thing a thing, or in the case of human identity, what makes a self a self. It is a discussion of essence, of the eternal “who am I” question. Again, the standard dictionary definition of identity is simply, “the condition or character as to who a person or what a thing is” (“identity,” n.d.). Locke (1996) asserted with the notion of the tabula rasa that basically I am my mind, implying that 3  self essence was the continuity of thoughts and memories. However, Krishnamurti (1996) and Sartre (2007), among others, noted that one could not be their own thought or memories because the individual is the one that is aware of them. The assumption in most self-identity discussions is that there is something more, that essence referred to previously, that is enduring through time. This is the me/I. Tolle (2008) in A New Earth describes the true self as the silent entity that we humans speak to in our minds. This self persists despite changes to the physical body brought on by the passage of time, and yet this self is also directly unknowable. When asked “who are you?” the average person will respond with sociocultural or physical qualities: I am Canadian, I am a woman, I am a nurse, etc. These are qualities of a person, but they are not the person, and yet this is how an individual will talk about their self-identity. To reduce the discussion to known elements, each person is a specific human (Homo sapien sapiens) born in a specific place and a specific time under specific conditions. Self-identity is not age, weight, hair color, personality, name, genetic code, or the physical body and yet it contains components of all of these things. Self-identity is also not social identity, although obviously the two are intimately connected (see notions of constructivism and constructionism).    Illness is an example of an identity label. A person is either ‘ill’ or ‘not ill.’ The image and perception of personhood, body, and self can change almost immediately upon identification with the label “cancer.” Being labelled with a disease disturbs taken-for-granted assumptions about the relationship between body and self and identity (Charmaz, 1995). This taking-up of a new way of thinking about self is noticeably different from identify shifts that occur in other life transformations, and in the post-diagnosis phase this imposed and unwanted shift in thinking about oneself may affect many (if not all) aspects of patient care. This can include communication and interaction with health care providers, reliability and availability of support networks, treatment decisions, clinical trial participation, survivorship questions, palliative care, and end-of-life (EOL) choices. A person's identity can be significantly affected by a cancer diagnosis, which can in turn shape their adjustment to cancer (Clarke et al., 2011) and how they construct meaning about having the disease (Willig, 2009). The uptake of a cancer-specific identity by patients may provide insights about how clinicians can improve care and well-being (Sparks & Mittapali, 2004).   4  The Literature   Although clinically-derived knowledge and a small body of available empirical evidence suggest that many factors influence the health care environment, there is yet little research into the critical role disease identity and related concepts such as embodiment and personification can play in informing nursing care planning as well as direct patient care, decision-making, and potential patient outcomes. That is not to say that the interdisciplinary literature on identity/self-identity and related concepts (embodiment) are not copious – they are, particularly in terms of theoretical writings. Empirical research is less prevalent, although there has been extensive work done in disciplines like psychology and anthropology. For example, excellent work on narrative and metaphor within the self-identity context has been enlightening, demonstrating the severe threat to self that cancer presents (Laranjeira, 2012). Other work has highlighted self-identity issues in the context of solid tumour patients including breast, prostate, colon, and brain cancer patients (Anderson-Shaw, Baslet & Villano, 2010). Most of the research literature contains mixed cancer groups including solid tumour folks (metastases often undifferentiated in the demographics) and lymphoma patients (for example, Henoch & Danielson, 2009; Mols et al., 2012). This work has also been defined by some researchers as “finding meaning” with a disease diagnosis, or “existential distress” as an attempt to incorporate multiple angles of the identity issue (Leung & Esplen, 2010; Ramfelt, Severinsson & Lutzen, 2002).  Work on the corporeal body (proper) using languaging around embodiment has been popular in the past decade as interdisciplinary work on psycho-oncology matures (Ramfelt, Severinsson & Lutzen, 2002; Salamonsen, Kruse& Erikson, 2012; Slatman, 2012; Waskul & van der Riet, 2002; van der Riet, 1999a). Connected with the idea of body is that of physicality and gender, with some impressive research being done on the dynamic of embody/disembody of cancer patients about their physical state of Being (Gilbert, Ussher & Perz, 2013; Griffiths et al, 2012; Gurevich et al., 2004; Lende & Lachiando, 2009; Ollife, 2006; van der Riet, 1998). Within the languaging of embodiment is that of “grotesque body” and abject embodiment, noting the material quality of the self (identity) as reflected in body (Waskul & van der Riet, 2002). Related emphasis on spirituality and the cancer experience captures a specific angle of self-identity as it relates to values and meaning within and 5  without the context of organized religion (Cole & Pargament, 2004; Gallia & Pines, 2009; Vachon, 2008). Finally, identity is most straightforwardly defined in the literature with categorical emphasis and social-identification as “victim, “patient,” “person with cancer,” and “survivor” (Park, Zlateva & Blank, 2009).   A thoughtful and extensive literature search has revealed some major, gaping holes in the research literature around self-identity (and even embodiment/body) in relation to nursing (discipline), nursing (practice), and haematology patients (adults and non-lymphoma patients in particular). Carving this analysis down further, leukemia patients are almost entirely excluded from the research, be it qualitative, quantitative, interventional, or mixed, on self-identity and cancer. Furthermore, within the academic literature, exact languaging around cancer patient disease take-up does not currently exist in a way that is satisfying. What seem to be missing are thoughtful analyses on recognizing and languaging identity issues for the haematology oncology patient. The oncology community has not acknowledged subtle distinctions characterizing the identity experience among different cancer contexts, or the way these may be expressed or communicated within the interactive processes of cancer care and coping with cancer. This dissertation examines such issues through thoughtful and informed qualitative research.  Rationale for Inquiry  My own personal journey led me to this dissertation topic. I have been an oncology nurse for over 15 years. During this time, I have worked in multiple healthcare settings and with adult patients in medical and surgical oncology, radiation and brachytherapy, and transplantation including bone marrow transplant (BMT), haematopoietic stem cell transplantation (HSCT), and umbilical cord blood transplantation (UCBT). I have noticed differences in the way both sub-populations of patients talk about and take on the cancer diagnosis, and over time I have grown increasingly curious about how the transcription of disease onto the self affects the cancer care environment. A cancer diagnosis shifts embodiment and self-identity and ostensibly influences decision-making, communication patterns, quality of life issues, and treatment preferences. Despite the complicating existential nature of identity as a study focus, interactions with patients over my career led me to believe that there was something within this phenomenon that deserved attention. Investigating the 6  phenomenon of cancer identities and how they become assigned to different oncology patient subgroups, as well as the possible relationship or role identity has in the care environment, are driving factors for this research.   I have long suspected that distinctions between solid tumour patients and haematological oncology patients based on sociocultural and historical factors play a role in how patients are cared for. For example, solid tumour patients tend to talk about and focus their emotions on the specific cancer-generating organ: “My left breast,” or “my liver.” Even when disease has metastasized to other organs, the originating tissue type (i.e breast, liver, lung) seems to be the focus of discussion and energy. For this reason, in my practice I have noticed that solid tumour patients tend to take on, or assume, their cancer in a very different manner than haematological malignancy patients. My work in haematology cancer has revealed languaging around cancer that is beyond being organ or site specific. These observations bracketed my thinking and assumptions when developing the research questions. For example, leukemic patients might talk about cancer as “me,” versus cancer as “it” or a specific location. Possible rationale around this could be that a haematological cancer, particularly leukemia or lymphoma, originates in bone marrow and is impossible to pinpoint. Haematological cancers also seem to be harder for people to comprehend on even a rudimentary or layman’s level. How can blood have cancer when blood is not an organ (per se)? Instead of being able to focus their range of emotion on a place, blood cancers demand an alternative vision of the world, and I suspect, of the self. The cancer, thus, is not a localized place, or a cell or organ, or anything slightly understandable. The cancer is, as I have been told in the clinical context, “myself.” Blood permeates the body. If the blood has cancer, then the body has cancer. The body holds the self, so the self can be cancer. Unlike the breast cancer patient who can point a finger at a breast, or mastectomy scar, the haematological oncology patient has nothing else to identify as the focal point of disease except the self. It is everywhere in them.  Further clinical experience suggests to me that adult patients diagnosed with haematological disorders including myelodysplastic syndrome (MDS), leukemias, and lymphomas represent a highly specialized population whose needs reflect fundamental 7  dissimilarities to the solid tumour oncology population.3 The absence of an organ-based solid tumour combined with a typically chronic disease trajectory and intimidating mortality statistics lead to intense, long-term dealings with the health care environment as patients navigate highly complicated and rapidly changing treatments including hematopoietic stem cell transplantation (HSCT), biotherapies, and intense chemotherapy regimes. Amplified opportunities to develop secondary disease including Graft-versus-Host Disease (GVHD), derivative cancers, as well as a host of possible oncology emergencies such as tumour lysis syndrome (TLS) or microangiopathic haemolytic anemia (MAHA) further complicate the course of haematological cancer while submersing the patient into psychological and physical situations highly distinct from those of patients with solid tumours. Medical treatments for solid tumours versus haematological malignancies radicalize distinctions further. Solid tumour treatments focus on organ-specific etiology. Solid tumour oncology patients generally undergo localized surgery and/or localized radiation, which may be combined with systemic chemotherapies or biotherapies specifically catered to their disease type. For example, estrogen-positive breast cancers may receive Tamoxifen, a chemotherapy medication that specifically targets estrogen-receptors on cells. Even if this same patient has metastatic breast cancer, their treatment regimen will tend to focus on the original tissue type. Breast cancer metastases are made of breast cancer cells that have moved to a new place (organ) in the body. Haematological oncology patients, on the other hand, will receive systemic chemotherapy (and potentially biotherapies) from the onset. Unlike solid tumour patients who might have a few options for treatment, haematological cancer is everywhere in the body requiring the body to undergo systemic treatment. Options remain sparse for haematology malignancy (HM) patients and might be palliative versus curative, local or systemic. Additional treatments might include transplantation which includes a preparatory regimen potentially including total body irradiation and high-dose systemic chemotherapy. Transplantation is systemic as well, as the cells (haematopoetic stem cells) from either the self (autologous) or a donor (allogeneic) are transferred directly into the body through a central line and circulate the body searching for empty bone marrow in which to settle and populate (engraftment). The health care experience and process for haematological                                                           3 Within this study I will use the phrasing “haematology oncology,” “haematology cancer,” “blood cancer,” (or with less frequency) “haematology malignancy” to denote this specific subgrouping of cancers. 8  oncology patients can be distinctly different from that of the solid tumour patient, thus confirming the medical dichotomy between the two. To me, it is impossible to talk of an identical cancer care trajectory or experience by lumping these subgroups under the umbrella of “cancer.”4 Recognizing the different disease processes and health care experience between the two is an important component throughout this study.5  Research Questions  The overarching research question guiding this study is: How are identity experiences described and elucidated by adult haematological cancer patients? I will attempt to answer this question by asking three subsidiary questions: 1. How are haematological cancer patients similar to, or different from, patients   with solid tumours with respect to the manner in which they reference identity   issues as part of their experience with cancer? (COMPARATIVE) 2. How do adult haematological cancer patients communicate their cancer    experience with reference to identity? (COMMUNICATION) 3. Is identity the best way to examine this existential relationship between self   and cancer, or does qualitative data suggest another angle that might be more   inclusive and reflect the disease environment more appropriately within the   context of nursing practice? (LANGUAGING)                                                            4 Cancer care is termed “cancer care journey” and “cancer care trajectory” within the literature and within the medical practice and clinical reality of oncology. It is the accepted way to talk about the stages a cancer patient goes through from diagnosis to treatment to remission or palliation. This is also related to the cancer care continuum, a notion that is used to talk about survivorship. This dissertation utilizes all three phrases. See Hewitt & Ganz (2006). 5 I am by no means asserting that the distinction between solid organ and haematological malignancies are the only factor at play regarding patient embodiment or disease identity. Indeed, even these have some gray areas (such as patients who have both diagnoses) or in patients with cancers of nonspecified origins. However, having worked now with (arguably) thousands of oncology patients this distinction does seem to be both consistent and present as spoken about by patients themselves. My observation of this phenomenon is the origin of the research questions for this dissertation. 9  Research Design and Methods  The purpose of this project was to conduct exploratory research into the way that haemaological cancer patients communicate about their experience of identity from the patient perspective and in a way that may inform nursing practice. I wanted to understand a more complete nature of the phenomenon of identity for haematology cancer patients and the way identity manifested itself as described by these patients. Sound theoretical and methodological frameworks were foundational to the qualitative research process. Sandelowski (2003) confirms that within any qualitative research project, the overall design will be “emergent, or highly dependent on the ongoing results” as the study progresses (p. 796). This type of emergent design is inherent to qualitative research, where an interactive process means that analysis and interpretation are simultaneous with the fieldwork experience. In fact, the fieldwork itself (usually primary interviews) will often shape the very design of the study (Polit & Beck, 2004, p. 60). For this inquiry, interpretive description served as the guiding qualitative methodological scaffolding, and nursing offered the disciplinal lens that informed research design decisions. Constructivist theoretical perspectives oriented the study toward corresponding ontological and epistemological concerns. Thorne (2000) notes that the data collection and analytic process are delicately interwoven and, in some respects, can seem almost indistinguishable. Inductive reasoning remained the process by which qualitative data were interpreted and structured in a way that provided meaning within the findings.  I conducted this study using a design comprised of five layers of research (discussed further in chapters 2 and 3). Interpretive description framed the data collection and analysis process in a manner that allowed for both sequential layers of perspective and concurrent analytic development across the layers (Thorne, 2008). “Layer” within the context of this study is more aptly meant to describe a particular angle of vision from which I examined the phenomenon in question. Within a multilayered qualitative research approach, each layer of research is conducted in a manner that iteratively informs and cross-pollinates the next. Another purpose for this approach is to coalesce unique angles of vision on the same phenomenon in a way that informs the generation of a more cohesive, comprehensive, and thoughtful representation of that phenomenon than would have been possible from a single perspective.  10   Within this dissertation the five layers of research included a critical integrative literature review, a directed historical inquiry, a secondary analysis of an existing qualitative database, interviews with a patient cohort, and interviews with experienced oncology clinicians. These layers were organized into two phases: Phase One (secondary data collection and analysis) and Phase Two (primary data collection and analysis).  The first three layers were aimed at theoretical exploration and foundation building and constitute secondary analyses (Phase One). The first layer constitutes a critical integrative literature review, followed by a chapter focused on historical inquiry specifically into the haematological cancer experience. The third layer was a secondary analysis of an existing qualitative database (from the UBC Cancer Care Communication Research Program). These three layers of data collection allowed me to investigate how ideas pertaining to identity were referenced within patient narratives about what it is like to experience cancer and communicate with others in relation to, and about, their cancer.   Using these three layers as a foundation, I then engaged in the fourth and fifth layers consisting of primary research (Phase Two). The fourth layer constituted participant interviews with a new patient cohort consisting of adult haematology oncology patients. In this fourth layer I gathered and analyzed original in-depth interview data from a theoretical sample of haematological cancer patients to deepen and refine my understanding of how they experience and reference issues of identity. These interviews provided depictions of how haematological cancer patients language, interpret, and explain what it is like to have haematological cancer and how that might differ from the more commonly understood notions of cancer experience. The fifth layer of research consisted of focused interviews with highly experienced and thoughtful oncology clinicians. Interviews with those experienced oncology clinicians were performed with a carefully chosen sample meeting specific criteria to discuss findings, corroborate impressions, and explore strategies for application of findings to nursing practice. The generalized findings from this study incorporated all five layers into a discussion enriched and deepened by multiple levels of data and reflective analysis in a way that explored an important, but neglected, angle of psycho-oncology nursing practice.   11  Defining Key Terms For the sake of clarity and consistency within this dissertation, the term solid tumour cancer refers to cancers that occur as masses originating within specific organs (National Cancer Institute, 2012). These tumours are comprised of abnormal tissue, or a collection of cells, that does not contain cysts or liquid portions. Solid tumour cancers are often named for the type of cell that they are made of such as “breast cancer,” meaning that the solid tumours are composed of breast tissue cells. Other examples of solid tumours include melanomas (skin), sarcomas (bone, fat, muscle, blood vessels, cartilage, and connective tissue), organ-specific (such as colon, prostate, lung), and cancers of the central nervous system (glioblastoma and meningioma).6 Solid tumour cancers that have metastasized are considered systemic, meaning they have left their in situ environment to travel freely throughout the body. These cancer cells can collect in other organs creating secondary tumour sites but professional oncology languaging continues to refer to the original tumour site as the primary cancer.   Neoplasms that originate in blood-forming tissues such as bone marrow or immune system cells are called haematologic (blood) cancers. These include leukemias, lymphomas, and multiple myeloma. In this dissertation research I focus primarily on leukemic patients in order to draw the distinction between tumour versus non-tumour subgroups. Leukemias are classified as acute or chronic types and are characterized by abnormal proliferations of leukocytes, or white blood cells. These cells can assemble in tissues such as lymph nodes but are not considered tumour-forming (National Cancer Institute, 2012; Vogel, 2011). For this study, I primarily recruited patients with the following major leukemia subtypes: acute myelogenous leukemia (AML), acute lymphoblastic leukemia (ALL), chronic lymphocytic leukemia (CLL), chronic myelogenous leukemia (CML), chronic myelomonocytic leukemia (CMML), and myelodysplastic syndromes (MDS).                                                            6 Clinical environments sometimes classify neurological cancers as a third category of cancer, differentiating between solid tumour and haematological cancers. For the sake of this dissertation research, neurological tumours will remain in the category of solid tumour cancers because, while they constitute neuron masses, these tumours still have an in situ origination point and behave as other solid tumour cancer cells (i.e. they metastasize, cease apoptosis, etc). This seems to agree with the research materials of several research-based organizations including the Brain Tumour Foundation of Canada (http://www.braintumour.ca/4730/encyclopedia). 12  While technically considered haematologic cancers, both lymphoma and multiple myeloma are often associated with pseudotumour sites (Vogel, 2011). For example, multiple myeloma is an overgrowth of plasma cells (a type of white blood cell) which congregate in bone tissue, creating tumour-like masses. Likewise, lymphomas (whether Hodgkin’s or non-Hodgkin’s classification) occur when the lymphocyte cells (a type of white blood cell) congregate in lymphatic organs such as lymph nodes or the spleen. Both lymphoma and myeloma patients were invited into this study, and the inconsistencies in messaging and communication between lymphoma and leukemic patients was explored at several points to ensure the nuances between the subgroups arranged under the general title of “haematologic cancers.”  It is important to note that this study was not created to explicitly compare the experience of solid tumour cancer patients with that of the blood cancer patients. Instead (as indicated in the first subsidiary research question), while undertaking this study I wanted to acknowledge the inherent differences between the two subgroups and focus my attetntion on those points of potential difference. At no time did I consider this study a purposeful comparative study. Rather, because the larger social umbrella of cancer encompasses both subgroups, my goal was to describe and unpack differences in a way that highlighted the haematology cancer patient perspective as the most important focus for this research.    Notions of identity are concepts hotly debated within philosophical, theoretical, and disciplinal contexts. The research conceptual field becomes more scattered with descriptive options when “self-identity” is included. “Self” and “identity” are popular topics throughout the social sciences with vast literature bases in psychology, anthropology, political science, sociology, and economics. These identity-based analyses ultimately evolve into exploration of self-concept, personality, and multiplicity of self (Oyserman, Elmore, & Smith, 2012). Foucault (1970) and Rose (1998) suggested that words shape the phenomenon in question, therefore how identity is used must be thoughtfully considered. One of the main challenges of research which seeks to examine the taking-up of a disease by a person is pondering how self-terms should be defined, used, and addressed by the researcher. Is it possible to even employ these concepts at all, particularly if the patient does not specifically use them to describe their own status? These issues assume even more breadth and complication when united with methodological choices and research strategies. To undertake an extensive 13  philosophical and empirical exploration of self-concept, embodiment, and identity is not the purpose of this study. Such an enterprise would be more appropriate as an entire program of research within another discipline (say, the social sciences). Instead, this study focused on qualitative research to provide clinically applicable observations and interventions for the applied discipline of nursing. For this reason, careful and purposeful application of conceptual terms to describe the uptake of cancer by the patient/self will be ever-present in discussions of methodology and research fieldwork, as well as in later chapters presenting findings and implications.    Identity is a complex concept, touching on several other related and interchangeable phenomena such as self-esteem, self-concept, self-construction, and self-perspective. For this dissertation, identity is broadly conceptualized to mean the categories individuals use to define who they are, and how they locate themselves in relation to other people (Owens, 2006). Self-identity implies that self is subsumed in identity, in the same way that self is subsumed in self-concept. Identity does not always imply self, and therefore within this dissertation “self” will be defined as:  an organized and interactive system of thoughts, feelings, identities and motives that is born of self-reflexivity and language, (2) [thing] people attribute to themselves, and  (3) characteriz[ing] specific human beings (Owens, 2006, p. 206). This definition of self honours not only existential concerns over who am I?  but also allows integration of social traits as well as cultural roles and personally-held identity beliefs. The self is distinguishable from identity in that self develops from self-reflection, unlike identity which is specifically considered a socially constructed categorization tool used by each individual as a means to identify with certain social groups and as a way to present themselves to others (Krieger et al., 2015). Further elaboration on the distinctions between self-identity and identity are provided in chapter 5.   Significance of the Study Long-term survival rates for adult patients with haematological cancers are disheartening. Clinically, long-term survival is defined as someone who is still alive 5 or 7 or 10 years post diagnosis and treatment, with treatment being palliative chemotherapy or aggressive measures such as transplantation (HSCT/BMT/dUCB) (Castillo, Winer, & 14  Olszewski, 2013; Pulte, Gondos, & Brenner, 2010; Raab et al., 2009; Robin et al., 2003). Multiple factors influence this statistic including cancer type and stage at diagnosis, age, gender, ethnicity, primary or secondary cancer, and comorbidities. Current research suggests that survival rates are low and decrease proportionally with a patient’s age, with a rapid decrease in survival noted for patients over the age of 55 (Castillo, Winer, & Olszewski, 2013; Estey, 2012; Juliusson et al., 2011; Robin et al., 2003). For example, 5-year survival rates for Burkitt’s lymphoma patients over 60 are estimated at 29% (Castillo, et al., 2013). Similar rates for multi-age adult acute myeloblastic leukemia (AML) patients are given at 21.4% (Pulte, Gondos, & Brenner, 2010). Additionally, the rates of cancer recurrence are startlingly high for haematological cancers and even more so for adult patients. One of the reasons for this is the modern use of the reduced-intensity conditioning (RIC) transplant in these patient cohorts, many of whom are over age 50. A decision for RIC occurs because the oncology team does not believe the patient can tolerate a normal-intensity conditioning regimen. For example, the relapse rate for adult acute myeloblastic leukemia (AML) patients after RIC allogenetic hematopoietic stem cell transplant are estimated at 32% (Schmid et al., 2012). Any experience with transplantation, whether it is full-intensity or RIC, is associated with the highest levels of hopelessness and depression as reported by any oncology patient cohort (Cohen & Ley, 2000; Lee et al., 2005; Leung et al., 2011). The purpose of outlining these statistics is to corroborate that rates of haematological cancer recurrence and mortality are very concerning for haematology patients. These rates increase with age, so that the populations with the lowest long-term remission or cure rates are the older adults. With statistics like these quoted in the health care literature, it is reasonable to assume that the haematological cancer experience is absolutely life-altering in a way that may be unique within the disease spectrum. While some other cancer diagnoses, such as pancreatic or liver cancers may have worse predicted mortality rates, they may not  induce a similar state of crisis for patients. This dissertation seeks to understand the fine nuances between how haematological patients identify with cancer and how they communicate about this transformation with the healthcare team. Even though medicine has assigned the overarching name of “cancer” to both groups, and rightfully so based on the mechanisms of cancer cell behaviours, patients with solid tumours and haematological tumours suffer in distinctly different ways. This observation has 15  been repeatedly confirmed in my own clinical practice, and the academic literature also routinely corroborates disparity between the two groups through analysis of issues such as distress, survivorship, and palliative care (see Albrecht & Rosenzweig, 2012). Haematological malignancies (HM) often involve treatment regimens that are uniquely personalized, highly aggressive, and centered around extensive periods of hospitalization and institutionalization. Additionally, many haematological cancers are discovered as oncology emergencies, requiring immediate hospitalization and commencement of chemotherapy and other treatments. Many HM patients are on a trajectory of being healthy, then fatigued, then fatally ill within a very short amount of time. Other HM patients, such as those with chronic forms of leukemias or with myelodysplastic syndrome (MDS) find themselves facing unceasing treatment and palliation with little hope of escaping the care system and experience constant worry of transitioning to more acute disease. HM patients may receive high-dose chemotherapy, extensive biotherapy treatments, total body radiation, and undergo transplantation (stem cell, bone marrow, or umbilical cord). Several studies on cancer-related distress confirm the impact of distress as significant, lasting several years after initial diagnosis (see Carlson et al., 2004; Jones, Parry, Devine, Main, & Okuyama, 2015). Within their physician guidelines, the National Comprehensive Cancer Network (2012) cite several studies of distress in HM patients attesting that it can lead to depression and anxiety, as well as poor communication with the healthcare team and decreased healthcare utilization. It is also important to recognize that a cancer diagnosis is highly emotionally loaded. Implications of the diagnosis regarding treatment and prognosis aside, the person immediately faces a temporary or permanent loss of part of the body, and a temporary or permanent loss of function that will result from treatment modalities (Chattoo & Ahmad, 2004). Boundaries between curable and incurable, between palliation and treatment are fuzzy and are often intentionally left undefined by health professionals (Chattoo & Ahmad, 2004). Recognizing the potentially poor prognosis for adult haematology oncology patients, this dissertation acknowledges the importance of psychosocial concerns in the cancer care environment and specifically focuses on the embodiment, or identity-changing aspects of a HM diagnosis within a nursing context.    16  Summary This research project seeks to document and interpret common languaging as evident in patterns, vocabulary use, metaphors, and themes used by cancer patients to describe the disease in relation to the body/self. Identification and description of identity issues and how these could affect not only patient care choices but also the pragmatic health care environment can provide valuable insight for both patient and professional communities.   17  Chapter 2:  Theoretical and Methodological Framework  Methodological and Philosophical Orientations  Methodological fore-structure for this research was guided by the qualitative research method of interpretive description (ID) and by the individualized nature of a self-identity focus. The adaptive flexibility of interpretive description provides opportunities for allegiances which lie outside traditional social science theoretical grounding. Regarding nursing research, Sandelowski (2010) confirms that qualitative researchers, firmly grounded in disciplinal theory (which in the case of the current proposal is a nursing lens) must acknowledge their preconceived position. Sandelowski writes that “the mandate for researchers... is to make explicit... where they are when they begin their studies and to be ready and willing to move away from there if their further investigations warrant it” (p. 80). I read this to be a reminder that, while overall attention to sound qualitative process is warranted, a disciplinary orientation is the ultimate driver for research design.    The disciplinary orientation for this research is nursing. Nursing ontology and epistemology provide the initial critical scaffolding of a research inquiry allowing for theoretical options to evolve as new knowledge develops. By this I mean that nursing has a core knowledge which constitutes the disciplinal focus and raison d’etre, linked with a social mandate due to the service nature of the discipline. Thorne (2014) defines this as “core disciplinary knowledge,” which evokes a specific lens that can be used to hone a research study through careful and meaningful construction of a research question (and purpose). The research question becomes the focus instead of the research bias of the researcher, and this perspective characterizes the fundamental nature of ID inquiry. Interpretive descriptive investigations, from my understanding, are discipline-driven research which focuses persistent attention to suitable data collection approaches and means of analysis that evolve in an iterative manner to generate knowledge specific to, and subject to, the needs of the discipline and meeting disciplinary epistemological demands (Thorne, Stephens & Truant, 2016).  18  Lincoln, Lynham, and Guba (2011) propose that qualitative research methodology is coupled with both disciplinal concerns as well as distinct theoretical perspectives. According to these authors, five paradigms (or worldviews) currently dominate the research milieu and include positivism, postpositivism, critical theory (which includes feminist studies), constructivism, and participatory/cooperative. Correspondingly, each of these paradigms carries with it certain assumptions about ontology, epistemology, and methodology.  Crotty (1998) cautioned that to make such rigid assumptions disallowed for the existence of paradigms composed of a mixture of theoretical elements. Instead of accentuating paradigms as the root of theoretical scaffolding, Crotty suggests that epistemology is the only foundation from which choices about theoretical perspectives and corresponding methodology and methods can be made. Three epistemologies dominate scholarly research and include objectivism, constructionism, and subjectivism, each representing an explicit belief about how meaning is conceived. Objectivism as an epistemology is generally associated with positivism and postpositivism, embracing the ideology that a disassociated researcher values only scientific rigor and discounts the social impact of a study (Crotty, 1998; Lincoln, Lynham, & Guba, 2011). Realism is the ontological association for objectivists who can conceive only of a single reality that can be measured, studied, predicted, and controlled. Subjectivist epistemology fuses the researcher and participant into a single entity, embracing ontological relativism that is socially and experientially based.  Constructionism, on the other hand, strikes a balance between objectivism and subjectivism in a manner recognizing the intentional and shared co-creation of knowledge by the participant and researcher (Crotty, 1998). Within this epistemological (and ontological) tradition a fusion of critical realism and relativism as ontological principles is possible, suggesting that a true reality exists but it is not directly apprehensible (Nightingale & Cromby, 2002). Rather, reality is comprehensible through contextual meaning-making between an individual and the world. This theoretical positioning lies in opposition to the tidy classifications proposed by Lincoln, Lynham, and Guba (2011), but perhaps represents a category ontologically and epistemologically situated between postpositivism and constructivism. An example of a constructionist theory in relation to a cancer diagnosis is offered by Schaefer-Schiumo and Atwood (2009). They state that the cancer diagnosis presents a re-definitional process in which the patient and their family create a “reality 19  centered around concepts of sickness and disease” that is both co-emergent and continuous (p. 322).  Taking this discussion further it is crucial for a dissertation on the self as individual, and the associated identity and disease identity that result, to be clear about philosophical scaffolding. Constructivism as proposed by Vygotsky and Piaget claims that the individual constructs their own internal understanding of reality. Meaning, therefore, is individual perceptions of reality taught to the person by society with an individualized “buy in” component in that ultimate perceptions are the result of freewill enacted by the person deciding (unconsciously or consciously) how reality will be interpreted (Bruner, 1987; Derry, 2013; Pass, 2004; Wadsworth, 2003). This is only a slight twist to the constructionist epistemology/ontology as described by Berger and Luckmann (1967), which proposes that meaning is given to objects by a group.  Constructionism deals with the objects themselves, rather than the details of who is viewing (or finding meaning in) the objects (Berger & Luckmann, 1967). Berger and Luckmann’s sociological theory suggest that objects such as a garbage bin, or even gender, take on meaning only when a socially-imbedded human interprets the meaning within a social context. Reality is not objective (realist) but rather is a social construct (i.e. social ontology per Burkitt, 1996). Constructivism would shift this to agree that reality is not objective (realist) but is rather an individual interpretation of a social construct that is, in turn, informed by social context. For the sake of this dissertation, both constructionism and constructivism have application and meaning as the proposed research aims to explore the meaning of self, identity, disease within the social context of oncology health care and Western (allopathic) medicine. However, emphasis on the individual is necessary here as my own intention is to determine meaning by the individual of what is happening to them, and thus constructivism will be a predominant ontological and epistemological concern for Phase Two during the primary interviews. By adopting constructivist ontology and epistemology as the basis for inquiry, my intention is to explore personal meaning, but also to explore with participants how they came to that meaning. Constructionist ontology and epistemology, positioning theorizing of meaning from a perspective of patterns across people, may have a greater presence in Phase One due to the secondary nature of the analysis. Subtle, and not so subtle, implications of how much and to what degree society determines reality and meaning 20  within this context will, of course, be present and will no doubt be explored further as the data collection unfolds. With specific reference to this dissertation research, Merleau-Ponty (2002) provided a theoretical grounding consistent with constructionist ontology and epistemology as well as an interpretivist perspective. He wrote that the world and objects in the world (be they animate or inanimate) are real (a priori) and loaded with meaning that can only be known through interaction with the mind. Therefore, reality can embrace realism (ontology) but this can only be known through relativist interaction of the world with the mind in a way that accentuates transactional (subjectivist) knowledge (epistemology) (Burkitt, 2003). Wrapped within these layers of meaning is the assumption that the person might hold an idea of embodiment of cancer (reality), but it is not until they are asked about what this means that the idea becomes, itself, embodied. Thus, it is not outside the realm of theoretical positioning that the interaction with the researcher can co-construct meaning of embodiment and identity for the participant. Herein lies a key distinction between constructionism and constructivism, even though both are linked through a naturalist paradigm (Polit & Beck, 2008). Whereby constructionism embraces the socially constructed meaning through intentional interaction between researcher and research participant, constructivism implies meaning-making achieved in the individual mind with the purpose of the researcher to interpret the participant’s perceptions (Crotty, 1998; Lincoln, Lynham, and Guba, 2011; Polit & Beck, 2008).  My proposed research endeavours to discover meaning in how cancer patients take on their disease so that practical, clinically-relevant interventions can be envisioned. The creation of nursing knowledge directed towards nursing interventions and nursing best practice is, in my opinion, the main expectation of nursing research. Central to this personal belief is the concept “meaning” as in, meaning to the person (of their body and disease) and meaning in relation to the care environment (both person and nonperson). However, realistic practice recommendations are impossible if individual meaning is not somehow part of a greater social picture of commonality that constitutes a shared reality that can be drawn on for practice recommendations. Per the methodological prescription within interpretive description, the act of merely reciting individual (subjective) reality is not useful for the discipline nursing if generalized themes and meanings are absent. While nurses expound a 21  goal of individualized care, in the case of nursing research this hinders knowledge generation applicable to groups of patients. Marshall (1996) cautions the qualitative researcher by saying that “improved understanding of complex human issues is more important than generalizability of results” (p. 524). Thorne correctly noted that “nursing always and inherently requires knowledge about patterns and themes within people in general so that it can better inform the care of the unique and distinct individual” (2008, p. 25). Therefore, objective interpretation is necessary in the research process as a means of understanding a social reality generalizable to larger populations. Per constructivist philosophical underpinnings, the individual reflects reality by reflecting society (social ontology) in a way that is both deductive (society down) and inductive (individual up). This blending of theoretical perspectives on the grounds of ontological and epistemological grounds is, I believe, justified within the context of applied nursing research. These ontological and epistemological distinctions, particularly around meaning and meaning-construction, are central tenets of interpretive description as a qualitative research framework.   Theoretical Scaffolding: Existentialism, Phenomenology, and Spirituality  Themes of body, self, spirit, embodiment, and identity within the cancer context naturally evoke theoretical interrogation around issues of being, person, selfhood, personification, spirituality/religion. In qualitative research, natural links exist between these phenomena and phenomenology, the existentialist movement, and spiritual inquiry. For the purpose of this dissertation, all three theoretical lenses seem appropriate and unavoidable guides along the pathway of qualitative inquiry. I will briefly discuss each theoretical position with respect to how it could, and often does, relate specifically to the oncology patient and the cancer care environment. Existentialism   Socrates offered perhaps one of the first, and most basic, of the existential concerns by saying “one should know thyself” (Solomon, 2004). The existential attitude is one of self-consciousness in which the self confronts the world and realizes the ultimate aloneness of being. And yet, there is being, there is a self. A core concept of existentialism to counter this aloneness is empowerment, and with it, personal responsibility. Existentialism is a philosophical movement that challenges a victim mentality and instead tells us that the 22  individual is ultimately responsible for him or herself. For the existentialist, to live is to live and to do so passionately (Solomon, 2004). Exploring the notion of the absurd, foremost existential philosopher Camus in The Stranger and Sisyphus demonstrates that life is its own meaning, and either the individual finds meaning in their own life, or there is no meaning at all to that life (Camus, 1989; Camus, 1991).  Contingency is a notion within existentialism which accepts that the individual is born, lives, and is shaped by society in ways that prevent absolute personal freedom and choice. Within this complex social system, the individual’s actual set of choices is highly limited and yet, these choices do still exist. Heidegger’s (2008) image of “thrownness” captures this notion that much that happens in our life is given, not chosen (p. 174). In the case of a cancer patient, the very real condition of cancer was not the choice of the individual (despite the fact that they may have, ultimately, made choices that predisposed their genetic structure towards carcinogenesis). This can be termed an existentialist attitude, whereby the threat of imminent death caused by a cancer diagnosis forces the individual towards what may have been a previously unexamined life (Solomon, 2004).  Existentialist thought says to these patients that, given the circumstances, they can choose to exercise personal responsibility and with it, free will, thereby living life to the fullest. This “fullness” is personal, determined by both the individual and the circumstances and stands in opposition to existentialist anxiety in which no self-action is seen as meaningful. In this way, existentialist theory is both a lens for qualitative research as well as a hopeful and optimistic tool for pragmatic application of research findings.  Phenomenology  Most of the literature on self-identity within the academic research context centers on phenomenology and its concerns with lived experience/life-world, including notably the perspective of symbolic interactionism. Arguably, the greatest amount of research that applies in any way to my dissertation topic and interests is from scholars who consider themselves, in one way or another, to be phenomenologists. The relationship is an obvious one, as phenomenology deals with the person as an embodied person, implying an integratedness of body and person (self/essence). The daily world or life-world (per Husserl) or being-in-the-world (Heidegger) is the foundation for individual human existence. Within 23  this concrete world, phenomenologists like Husserl, Heidegger, Sartre, and Merleau-Ponty claim to find meaning in life experiences by analyzing their intentional structure. Mind-body dualism doesn’t exist, but rather the integrated body unit contains both inseparable parts that exist in time and space. Marcum (2004) wrote that phenomenology was a holistic solution to the “clinical gaze” of modern Western medicine in that it rejects the mechanized model of the body claimed by positivism and perpetuated throughout physician-based health care systems. Illness for the phenomenologist is not the dysfunction of the disembodied body-machine but rather a disruption of an embodied person’s life-world. Zaner (1981) coined the term “uncanniness” to describe the ability of a phenomenology-informed physician to cast an empathetic gaze on patient suffering because each human has, itself, a life-world. Uncanniness also describes the fact that humans are contingent beings able to express a “profound sense of bodily alienation which is intrinsic to the experience of illness” (Toombs, 1993, p. 100). The purpose of a person embodied in the illness experience for the phenomenologist is two-fold. First, the mechanized body must be transformed into a lived body that claims bodily identity as whole and not abstracted (objectified) (Marcum, 2004). Second, the textual body that results from medical records (i.e. the history taking, lab work, diagnostics, etc.) must also be transformed into a lived body (Marcum, 2004). This is a bit more difficult to attain. Sveneaus (2000) wrote that the body was a “meaningful phenomenon” that has meaning because it is lived “and not because it is written” (p. 139). These have been very important concepts for the theoretical positioning of my research. What is perhaps even more useful as a theoretical foundation for research of the cancer patient taking-up of cancer into their self (embodiment?) stems from Heidegger. When a person is diagnosed with a dangerous, and potentially fatal, illness such as cancer, the embodied person must face mortality in a way that shows them that the authentic self is finite (Sveneaus, 2000). The face of death (or illness) creates anxiety (Angst) as the base of a life world that is suddenly unfamiliar (or unhomelikeness, Unheimlichkeit). Resolving Angst reestablishes homelikeness (Heimlichkeit), resulting in what Marcum called a healing of the body “even though the diseased body is not cured” (2004, p. 48). This is a critical element to 24  what I believe is the ultimate purpose of my research -- to find a way to facilitate comfort and peacefulness of the patient when the body is ill and potentially cannot be cured.    Spirituality The importance of spiritual considerations for the cancer patient (or anyone for that matter) cannot be overlooked. Surbone and Baider defined spirituality as “connected with a higher self and with God and with the Universal Spirit, the Creator, the Life Force or whatever name you desire to give to that Divine energy” (2010, p. 228). Gates (2006) asserted that spirituality was one of the most common themes in cancer patient narratives. This is not surprising considering that a cancer diagnosis opens a direct channel to mortality. A similar scenario was supported in research on cachexic cancer patients by Hinsley and Hughes (2007) who claimed physicality of the body is unified with “other aspects of embodiment: emotions, spirituality, relationships, and social functioning” (p. 88). Van der Riet (1999) discussed the notion of ethereal embodiment as attending to the body (physical) through holistic practices such as meditation, visualisation, and massage. Discussed as poststructuralist methodology, the process of seeing and understanding embodiment through massaging the cancer patient allows for a “reclaiming of ‘the old body’ and an experience of mind and body connection” (van der Riet, 1999b, p. 4). Religious beliefs such as Christianity hold that spiritual embodiment recognizes the physical body and the spiritual body, whereby the body becomes a home for the spirit. Separation of the two signifies disembodiment, therefore human spirituality is characterized by union to body and spirit (embodiment) (Kanis, 2002).   Spirituality as a consideration of nursing care (at a minimum) has been a topic of discussion within the context of an increasingly secularized profession. Existential approaches to identity tend to be more spiritual in nature because they focus on the importance of dialogue and personal meaning, whereby the experience of being with a disease (such as cancer) acknowledges the holistic nature of the body (embodied/embodiment). Addressing spiritual care in the context of embodiment can be a particularly significant aspect of the cancer trajectory. Sawatzky and Pesut (2005) noted that “much of the insider perspective on chronic illness and end of life has revealed these 25  challenges often lead to growth on the spiritual path” (p. 29). Purposeful nursing care, then, acknowledges and honours spirituality as an aspect of the cancer journey in some way.  Summary Theoretical and methodological foundation for this dissertation include applying interpretive description scaffolding, thereby acknowledging the close link between nursing epistemology (core disciplinal knowledge) as central to driving nursing research. To generate new knowledge around the experience of identity for the haematology oncology population, I applied a five-layer data collection and analytical process (described as Phase One and Phase Two). The following chapter will discuss specific details about the layering methodology used to undertake this study and establish criteria by which research was undertaken.   26  Chapter 3: Research Design   Introduction The complex and personal nature of this study on the identity experience for the adult haematological oncology patient necessitated qualitative inquiry as a means of exploring the richness and depth of this phenomenon. Qualitative inquiry encouraged collaborative wondering in addition to opportunities for flexibility in methodological choices as new insights and relationships developed (Ellingson, 2009). This research was conducted using the qualitative scaffolding offered by Interpretive Description. Interpretive Description (ID) is a qualitative research methodological framework that aims to generate clinically relevant knowledge through inductive reasoning. ID can be utilized by qualitative researchers to describe, and then inform, the clinical environment by suggesting “tentative truth claims” that can be pragmatically applied to nursing assessment, care planning, and intervention strategies (Thorne, Reimer Kirkham, & O’Flynn-Magee, 2004, p. 7). This is accomplished through thoughtful, non-categorical research utilizing several carefully chosen qualitative methods and techniques. Thorne et al. state “the design strategies in interpretive description borrow strongly from some aspects of grounded theory (GT), naturalistic inquiry, and ethnography, drawing on values associated with phenomenological approaches inherent in the methods of data collection” (2004, p. 6). This chapter outlines the specific methodological process for this research, including details on the layered research approach and specifics about method and data collection.  Theoretical Background for Research The generic process of qualitative research consists of material practices that transform phenomena into representations through generation and collection of data. Data may take many forms including field notes, interviews, photographs, recordings, and reflective memos. ID is situated research that is interpretive because, as in most qualitative research, the observer/researcher must use gathered representations in “attempting to make sense of or interpret phenomena in terms of the meanings people bring to them” (Denzin & Lincoln, 2011, p. 3).  ID guides sound empirical research within applied disciplines for which traditional qualitative research paradigms and methodologies are not particularly well-suited. 27  Parse, Coyne, and Smith (1985) lamented that, because the historical origins of ground theory, phenomenology, and ethnography lie in different academic disciplines, it is difficult to apply them adequately to applied nursing practice. Echoing the concerns of Guba and Lincoln (1981), Thorne (1991) noted that these methodologies arose because of specific concerns and questions positioned within their associated discipline. In a similar manner, ID emerged as a discipline/nursing-specific research strategy to address specific theoretical and applied practice concerns specific to nursing. ID allows for mixed approaches to data collection and analysis that can transcend the rule structures governing other qualitative research perspectives. For example, my study embraced a phenomenological quality as I sought to describe the phenomenon of identity as a lived experience of blood cancer patients. Thick description is heavily associated with phenomenology (van Manen, 1990). However, nursing practice does not benefit from simply describing phenomena, but rather necessitates that description be turned into action through additional interpretation that is discipline-specific. Thorne (2008) observed that the clinical mind cannot be satisfied with description, but rather pursues associations, relationships, and patterns within described phenomena.  The ID theoretical framework that guided this study provided the ideal context by embracing and encourating creative, credible, and practical research outcomes through allowing logical methodological choices to be driven by the research question, and not vice versa.  Review of Research Questions and Overarching Design As discussed in chapter one, this project had several overarching goals that informed the direction of research. The study was designed around two separate, but complementary, phases aimed at addressing the main overarching research question: How are identity experiences described and elucidated by adult hematological cancer patients? Subsidiary research questions that further guided research were:   1. How are haematological cancer patients similar to, or different from, patients with  solid tumours with respect to the manner in which they reference identity issues as  part of their experience with cancer?   28  2. How do adult haematological cancer patients communicate their experience of self- identity with cancer?  3. Is self-identity the best way to examine this existential relationship between  self/cancer, or does qualitative data suggest another angle that might be more  inclusive and reflect the disease environment more appropriately within the context of  nursing practice?   These additional questions provided complementary angles of vision and understanding within the larger inquiry around identity as experienced by blood cancer patients.   Plan for Data Collection and Analysis  This qualitative study was undertaken using a layered data collection and analysis process. The research process throughout the five layers (two phases) was designed to generate interpretive propositions about how haematological cancer patients experience identity in particular ways while focusing on specifically how they communicated about this phenomenon. Briefly, analysis of the data occurred concurrently with data collection in each layer and continued in an iterative manner extending into the subsequent layers. Findings drawn from each layer of the study were informed by those arising from the preceding layers. Constant comparison, a methodological strategy employed widely in Grounded Theory (Glaser & Straus, 1967), served as analytical guidance for the layered research approach to ensure reflections of the phenomenon under study were both iterative and inductive. Subsequently, comparisons were made continually throughout the data collection process both intra-layer and inter-layer. Figure 1 details the relationship of the layers of inquiry. Figure 2 demonstrates the multi-layered data collection process.   Throughout research layers 1 and 2, I read and reflected on current academic literature (as a formal integrative review) as well as historical literature around how the phenomenon of identity has been discussed or referenced by cancer patients, and specifically haematological cancer patients, in the past. This perspective was critical in engaging a modern literature review process while acknowledging the importance of historical factors and sociocultural influences on how we form ideas about ourselves. When interacting with 29  interview transcript data in layers 3, 4, and 5, basic demographic data from the primary interview participants and clinicians, as well as from the UBC Communication in Cancer Care (CCC) database participants, was summarized to describe the sample and provide additional context for analysis and interpretation of the study findings. When working with      FIGURE 1: Layers of Methodological Inquiry  PHASE ONE  FOUNDATION-BUILDING (SECONDARY RESEARCH) Layer 1: Integrative Literature Review   How have academic sources referenced identity in relation to disease, and    more specifically to cancer/haematological cancers?   Layer 2: Historical Review   How have previous generations of adults described their identity within the   context of experiencing haematological cancers?  Layer 3: Analysis of Existing Database (Secondary Analysis)  Within the CCC database, how do haematological cancer patients reference   identity issues in their descriptions of and communication about care cancer,   and how are these similar to, or different from, references about identity    issues made by solid tumour cancer patients?   PHASE TWO  PRIMARY RESEARCH Layer 4: Interview with New Patient Cohort (Primary Data Collection)   How do haematology oncology patients talk about their experience of    identity?   Layer 5: Thoughtful Clinician Interviews  How does my evolving analysis of the identity experience of haematology    oncology patients resonate with the clinical understandings experienced    practitioners have of HM patient experiences with identity?       30  FIGURE 2: Multi-Layered Data Collection Process         This figure demonstrates the interconnected nature of the five layers of data analysis. Phase One layers (integrated literature review, historical review, and secondary analysis of an existing database) occur in a manner that build on each other creating a sound and reflective foundation from which the phase two layers (primary data collection) are undertaken. The final analysis, then, represents an incorporation of multiple layers, perspectives, and complex reflection toward the goal of presenting both an interpretation of identity issues in adult haematological oncology patients that is both pragmatic and unique.     31  the interview transcripts, both in the secondary (layer 3) and primary context (layers 4 and 5), I applied constant comparison and thorough documentation of analytic thinking (via reflective journaling) to establish an audit trail and to provide a means through which interpretive induction could create meaningful findings. Field notes further documented the narrative development of my analytic reflections during primary research, and collateral items (including journal entries, poetry, writings, photographs, or self-portraits given to me by study participants) were considered an important supplementary data source.   In the spirit of interpretation, I reflected on various theoretical and methodological sources to inform my analytic process. Philosophical influences from fields such as phenomenology, existentialism, and spirituality studies provided points for reflection as well as areas for comparison and theme generation (see chapter 2). For example, identity remains a substantial focus for phenomenologists, but tends to adhere to the context of the phenomenon of identity itself (including how it is experienced and created). The focus of my dissertation research on how identity is experienced has multiple contexts, including the way these patients communicated to health care providers. I reflected on works by phenomenologists whose writings in corporeality (van Manen, 2007), illness (Marcum, 2004), and mortal angst (Sveneaus, 2000) informed my thinking. The notion of lived experience is a component of this research but is not an overarching (driving) concept. Extensive work on identity within the context of disease and chronic disease has been undertaken by academics in psychology and sociology (Symbolic Interactionism, for example), and theories arising from this work also informed my evolving analysis as research progressed. Finally, in specific reference to texts created via transcription of the interviews (both patient interviews and the clinician interviews), I utilized techniques outlined by narrative inquiry to explore the text as narrative in a way that seems appropriate.7 Due to the                                                           7 The entire story around identity is a narrative about the patient journey with cancer, so it makes sense that the bulk of primary data in this research project will have a narrative quality. Spector-Mersel (2010) advocated for a narrative paradigm as a unique mode for investigating intimate human moments, asserting that narrative inquiry was “full-fledged research” that linked the “hows” with the “whats” on the premise of “the nature of reality and our relationships with it” (p. 204). Methods associated with narrative inquiry allow for a detailed examination of the organization and substance that makes up a personal story, giving reference to psychological, sociological, and historical referencing through an interplay of language and meaning (Wells, 2011).  The narrative chosen by an individual is, in the constructivist sense, the story that is “settled on as ‘being’ our lives” (Bruner, 1987, p. 709). The use of metaphor is particularly functional in the work of Laranjeira (2012) around the effects of a cancer diagnosis on self-identity. After intensive narrative inquiry 32  iterative nature of qualitative research, within the study planning process I anticipated additional considerations of both techniques and concepts. As such I accepted that things (concepts, themes, key ideas) might arise which could have an appropriate place in deepening the research findings during both analysis and interpretation of the findings.  I will now outline the specific methodological strategies used for each of the five layers of data collection and analysis.  Phase One: Secondary Research Phase One of this study consisted of a thoughtful analysis consisting of three interacting components meant to build contextual richness around issues of cancer identity within the healthcare environment, and more specifically, around the context of communication. The first layer of research constituted a critical integrative literature review, followed by a focused historical inquiry into the haematological cancer experience. The third layer was a secondary analysis of an existing qualitative database (the UBC Communication in Cancer Care Research Program). These three layers of data collection allowed me to investigate how diversity and manner of ideas pertaining to identity were referenced in patient narratives about what it is like to experience blood cancers, and subsequently how they communicated with others in relation to, and about, their cancer.  Since cancer has been a nagging and frightening disease for thousands of years, it appears in the literature at several points throughout history in ways that touch on issues important to this dissertation project. By examining those references and building a foundation based on historical inquiry and an academic literature review seeking references (including quotations) made by patients and interviewers around related questions, my hope was to vastly expand my own understanding of the phenomenon of identity. Insights gleaned from this process were simultaneously useful during the third layer of Phase One, namely the secondary analysis of the UBC Communication in Cancer Care database. References,                                                                                                                                                                                     research, Laranjeira advocated for metaphor as the most useful tool for the cancer patient in bridging the world of technology and treatment. While the notion of the Ricoeurian narrative perspective of hermeneutics is appealing, I believe that this type of inquiry can only reveal a portion of the larger picture of the disease experience. Narrative inquiry, then, is a useful tool for qualitative research but requires the creation of narrative (rhetoric) which can be heard, read, or viewed and then strategically analyzed (Clandinin & Connelly, 2000; Leggo, 2008).   33  phrasing, verbal and (if available) nonverbal communications around embodiment and identity were analyzed. Phase One embraced a comparative lens as both solid tumour and haematology oncology patients were examined both directly and indirectly under a generalized “cancer” umbrella. The overall dissertation was focused on haematological oncology patients, so the work of this inquiry was also to produce thoughtful, focused reflection in a way that honoured the spectrum of cancer patients but consecutively prepared for the specialty-focus on the haematology oncology population in Phase Two. My goal of Phase One, ultimately, was to foster a deepened sense of what was actually occurring within the cancer context of identity in order to inform the questions driving participant interviews in Phase Two. That is not to say that I entered Phase Two with conclusions developed from my Phase One inquiry, but rather that this initial, foundational investigation bolstered methodological and theoretical underpinnings in a way that allowed greater depth of questioning, investigation, and analysis.   Layer 1: Critical Integrative Literature Review A critical integrative literature review scaffolded this research project in a way that was both meaningful and provided legitimacy for exploring identity issues within the cancer context. The main question that guided the literature review was, how have academic sources, and specifically nursing, referenced identity in relation to cancer (general) and haematological cancers? Academic research literature from the past decade was accessed via library searches, on-line searches, reviewing citation lists, collegial networking recommendations, and searches of EBSCO, PUBMED, CINAHL, and other databases. The goal was to further establish a base of what existed in the literature previously, as well as to create an integrated discussion of the state of the literature today. Sources were reviewed for applicable themes and topics based on a hierarchy of applicability to the dissertation topic (identity in haematology oncology patients). Identity discussions from other disciplines and specialties, such as sociology or solid organ transplant, were consulted as a means of stimulating additional keywords, concepts, thinking, and potential avenues for exploration. Concepts related to identity, such as body image, embodiment, and personification, were also examined within the literature to inform the original research question. I became quickly 34  aware that the vast body of literature on this collection of topics is extensive, and therefore careful reflection on the stated research questions ensured adherence to the research focuses (identity, disease identity, chronic disease identity, cancer identity). This critical layer illuminated gaps within the literature, and firmly grounded this study’s contribution to both exploratory and descriptive research as well as serving as a concrete foundation from which to launch the other layers of inquiry.  Layer 2: Historical Inquiry Following the critical integrative review of the academic literature, a historical inquiry of select primary and secondary sources (including medical textbooks, published journals and letters, literature, newspapers, and oral history transcripts) constituted the second layer of data collection and analysis. Historical inquiry is based on asking a specific question of the historical record (Quigley, 1979), and while I did not intend a formal stand-alone historical inquiry, I made an effort to fully explore the historic record as a means of deepening my reflections on identity as experienced by adult haematological cancer patients. My question driving historical inquiry was similar to the main research question: how have haematological cancers been characterized and explained in the past in reference to issues of identity? The purpose for this historical inquiry was foundational as well as informational, and a review of primary source and secondary source materials was performed in an effort to locate specific references to identity (or similar terms) in adult (and in some cases, pediatric) cancer (writ large) and haematological cancer patients. Works of fiction and nonfiction were referenced in this research phase to provide both context and reflective material. Unlike the literature review which included pediatric resources as well as multidisciplinary references, the historical inquiry aimed to be very specific in purpose to establish a baseline of knowledge from which to build further analysis and investigative techniques. In this way, the historical inquiry was focused as a review of empirical sources as a “collective and theoretically informed inquiries into selective aspects of the past” (Fulbrook, 2002, p. 6). As expected, this historical inquiry served as excellent background to the modern academic research that constituted a proper literature review. I did not perform a history of identity for patients with haematological cancers, but rather my intent was to draw on historical inquiry 35  methods as an alternative way to explore how issues relating to identity have emerged in the various literature forms over past generations. The emphasis of this layer was on sociocultural, political, and in some ways philosophical groundings.  As an innovative component of qualitative research, by including historical inquiry as a specialized layer of my research process I examined sources that directly and purposefully informed the foundational base-building of this research dissertation. I did not intend an exhaustive search of historical records, although the resulting chapter is impressive in scope and content. Rather, I planned to undertake this layer of research with the sole goal of this review serving as an auxiliary and complementary component of the integrative literature review and as a foundational and informative component on which to undertake the primary interviews with patients (layer 4). I wanted to reflect on fictional, biographical, and theoretical literatures of the past to investigate how they might reveal something about how humans have considered or reflected on identity issues in the context of cancer and specifically haematological cancers.  Sandelowski (1999) described that all qualitative research contains a temporal component. I believe a historical inquiry and subsequent review contributed contextual richness around the issues of cancer identity as experienced through time in a way that was both unique and enriching to qualitative research. Since cancer has been a devastating human disease for thousands of years, references to it appear in the literature at several points throughout history in ways that touch on issues and themes important to this overall study. By examining these primary sources, I bolstered an evolving analysis of the identity experience of adult haematology oncology patients by investigating how this phenomenon has changed, and how it has remained the same, over time. By incorporating and intermingling different timelines and reflections of past and present through research in layers 1 and 2, I was able to develop a richer foundational understanding of how identity has been experienced and communicated about by patients with haematological cancers.     36  Layer 3: Analysis of Existing Database Insights gleaned from the above historical and literature analysis processes served useful to guide qualitative method applied to secondary analysis of the UBC Communication in Cancer Care (CCC) database (Thorne et al., 2014). This qualitative database includes interview transcripts from 125 adult cancer patients who provided more than 500 interviews over a 7-year period (2005-2012). The goal of the interviews contained within this database was to understand and explore the changing communication needs and preferences for cancer patients across the cancer trajectory (Thorne et al., 2014). The driving question for this third layer of research was, to determine, through accessing this preexisting database, how do haematological cancer patients reference identity issues in their descriptions of and communication about care cancer, and how are these similar to, or different from, references about identity issues made by solid tumour cancer patients?   The main criterion for inclusion in the Phase One (secondary research) portion of this study includes patients who consented to, and gave, interviews to the UBC Communication in Cancer Care team over the course of the research program’s existence (UBC BREB H09).8  This involves a patient cohort of over 600 patients in the period enveloping 2000 to 2013. Patients interviewed as part of this database were over the age of 18 years old and had a variety of cancer diagnoses. Additionally, patients included in this database have been interviewed as part of the UBC Communication in Cancer Care research program at any state in their disease trajectory, from initial diagnosis to remission, survivorship, or end of life and palliation.   From the CCC database, I examined a set of interviews from 15 haematology oncology patients matched with 15 demographically similar non-haematology cancer patients.  This strategy was employed with the assumption that matching subsets would provide some control for age and gender while yielding useful and perhaps unique insights. This takes into consideration that there exists a data set for both subgroups that was sufficient and rich enough to provide substantive interview data from which identity and other cues around embodiment and body image (for example) could be gleaned. By examining transcripts from both solid tumour and haematological cancer subgroups, I aimed for a                                                           8 Dr. Sally Thorne, primary investigator (PI) of the Communications in Cancer Care research program, confirmed that the team linked earlier approvals from when the project was first approved by ethics committees and continued to have the approvals confirmed annually. 37  comparative reference for further probing, expanding clarification, and seeking deeper meaning from the data in a way that honoured both.   References to identity, including specific and nonspecific verbalizations (such as pronouns or saying the actual disease), phrasing, verbal and (if available) nonverbal communications around identity and associated themes (such as body image, embodiment, personification, being/Being) were inductively analyzed. For example, I looked at questions like: how often do haematology oncology patients reference themselves, and how do they do this with language? Was this similar or different to how the non-haematology oncology patients reference themselves? As more transcripts were read, constant comparison was again utilized to stimulate reflective thinking and deeper reading.    Summary: Phase One The overarching goal of the first three layers of data collection was to foster a deepened sense of what occurred within the cancer context of identity in order to inform the questions driving participant interviews in layer four and five. Each of these three levels deepened my reflections on the phenomenon of identity, and enabled a more sensitized fine-tuning of the primary data collection undertaken in layers 4 and 5. That is not to say that I entered primary data collection and analysis with specific conclusions, but rather that the initial, foundational investigation from the first three layers of data collection and analysis informed and clarified multiple ideas, theories, and methodological and theoretical underpinnings as a means to further pursue optimal depth of questioning, exploration, and analysis.  Phase Two: Primary Research  Using these three layers as a foundation, I then undertook the fourth and fifth layers consisting of primary research. The fourth layer represented participant interviews with a new patient cohort consisting of adult haematology oncology patients. In this fourth layer, I gathered and analyzed original in-depth interview data from a judgement sample of haematological cancer patients to deepen and refine my understanding of how they experience and reference issues of identity. I anticipated that these interviews would provide depictions of how haematological cancer patients language, interpret, and explain what it is 38  like to have haematological cancer and how that might differ from the more commonly understood notions of cancer experience. The fifth layer of research, following my discussions with patients, was comprised of focused interviews with a purposeful sample of highly experienced and thoughtful oncology clinicians. These interviews were performed to gather new objective knowledge about the care environment, provide a new perspective about identity as expressed by this patient subgroup, discuss specific findings, corroborate impressions, and explore strategies for application of findings to nursing practice. The findings from these additional two layers of primary research were incorporated into a discussion that was enhanced and deepened by multiple levels of data and reflective analysis.   Layer 4: Interview with a New Patient Cohort   I personally conducted and digitally recorded (voice-only) face-to-face interviews with a new patient cohort of 14 adult blood cancer patients. These interviews were semi-structured, open-ended, focused, and exploratory in nature. In all cases, the interviews assumed many qualities characteristic of a phenomenological interview structure (by asking “why” and probing for deeper detail) as well as a narrative analysis strategy for requesting more detail and description to capture an experience into words and expose appropriate languaging. The question driving this primary research and analysis was: how do haematology oncology patients talk about their experience of identity?  The participant interview component of this research project necessitated initial purposeful (or judgement) sampling. Assuming that in a study of a human phenomenon of this complexity, the decision that no new data are expected seems inherently arbitrary, I rejected the notion of “saturation” as an appropriate outcome (Bowden, 2008). I instead accepted the concept of sample adequacy and my initial recruitment goal was an estimated 10 thoughtful and reflective research participants (Malterud et al., 2016; Morse et al., 2002).9 Specific criteria for inclusion and exclusion in the study can be found in Appendix A. During                                                           9 The ultimate purpose of this research was to examine the general population of adult haematological oncology patients rather than to examine a controlled situation or to describe the relationship of independent and dependent variables. Marshall (1996) recommends that the qualitative researcher initiate a study using several sampling techniques including maximum variable sampling, which seeks a broad range of participants, to critical case sampling, or subjects with specific experiences. As the data collection process progressed, a thorough sample review was undertaken to determine the composition of the research participant cohort (theoretical sampling). At that time, purposeful sampling of a specific haematological cancer type, gender, or age sample was commenced to ensure a balanced interview database. 39  recruitment I reserved the option for flexibility within the final number of study participants for this layer, and my decision to conclude the study depended on arising circumstances (as discussed in chapter 7). My commitment was to continue recruitment and/or subsequent interviewing until the interpretive data set I accumulated provided me with something meaningful to say about the phenomenon. Luckily, there was a great deal of enthusiasm from patients to participate in interviews. This research layer was designed to interview key informants, namely particular adult people with a particular health situation. Similarly, opportunities to access collateral data did arise on multiple occasions during the study and these items were considered within the context of the story accompanying them, but it is important to note that the primary data source for this layer of inquiry was the transcribed and live recordings of the individual interviews.  Recruitment of Participants   Recruitment of participants commenced with the distribution of a letter and associated flyer through key stakeholder personnel in the cancer clinics and hospitals in British Columbia (BC, Canada), focusing on units and programs with the BC Cancer Agency (BCCA) and the BC Leukemia/Bone Marrow Transplant program (L/BMT). This letter introduced the researcher and explained the research project with associated clinical outcome goals. As I am actively involved in the local, provincial, and national oncology nursing communities, as well as being long-employed by the L/BMT program, the process of negotiating entry into the field was uncomplicated and straightforward.   Additionally, I posted flyers and notices on bulletin boards in local cancer clinics and in-patient and out-patient settings as an additional means for recruitment. Local BC chapters of national organizations such as the Leukemia and Lymphoma Society (LLS), the Canadian Cancer Society (CCS), the Canadian Association of Nurses in Oncology (CANO/ACIO), the Canadian Partnership Against Cancer (CPAC), and the Canadian Bone Marrow Transplant Group (CBMTG) included research participant requests (specific to the guidelines outlined above) in their newsletter and social media feeds. Finally, I requested that colleagues distribute flyers detailing the study during provincial haematology oncology patient support groups, focusing on those operated by local LLS.  Potential participants who responded to these queries received an initial informational letter explaining the study. They were given an opportunity to ask questions or voice 40  concerns with the researcher. The initial information letter and consent made explicit the fact that choosing, or not choosing, to participate in the research study would in no way effect their health care delivery. Individuals who expressed a desire to participate, and who met the inclusion criteria, were emailed the informed consent statement. They were asked if they had any questions before signing the form (see the Information and Consent Form - Patient Participant, Appendix D). The participants were notified that they could choose to leave the study at any time. Discussion of ethics and other considerations in relation to the interview process and method follow.  Interview Techniques Due to the intensely private nature of the conversation, initial interviews were conducted in private, personal places where the participant felt most comfortable. In some instances, this was the participant’s home, but in about half of the cases we met in off-site locations (like coffee shops). Emphasis on safety for both the researcher and the participant included recommendations by Thorne (2008) and Paterson, Gregory, and Thorne (1999). I digitally recorded each interview and made sure that the participant was fully aware of the recorder. I worked quickly establish rapport and foster a comfortable, safe environment while collecting demographic and disease-related information. Foundational themes and content from the first three levels of data collection and analysis informed the semi-structured interviews through the utilization of a guide laced with potential topics and questions to stimulate a focused discussion (see Appendix B for the interview guide). For this reason, initial interviews were not boundaried by a rigid timeframe, and this looseness allowed for natural conversation and cultivated a free-flow of thoughts. My sensitivity to the patient’s time and comfort parameters meant that most interviews ended up lasting 60-90 minutes.   Preliminary interviews were specifically planned as semi-structured to ensure desired information was obtained without placing too many pre-existing restrictions and thus choking a natural flow of conversation. This method was vastly different from the unstructured, unstandardized interview technique suggested by Waskul and van der Riet (2002) for studies of embodiment and existential concerns. However, I felt strongly that organizing the interview and tentatively drawing from a set of questions (i.e. semi-structured) triggered from my in-depth Phase One inquiry allowed for conversation that was both free-41  flowing and directed to the point of ensuring key themes were explored. This also allowed for the conversation to flow according to the needs and preferences of the patient. The semi-structured approach also allowed the opportunity for the interviewer (myself) to listen for specific language cues from the participant that led to further, deeper questioning. By asking each participant the same question, or general question, consistency in data collection was achieved allowing for direct comparisons between responses.  Before going into the field, I undertook extensive background preparation in interview and research techniques. Specifically, I reviewed several research methodologies utilized by skilled researchers for engaging in topics like body, body image and self-identity as well as recommendations around phenomenological and philosophical interview techniques. Merleau-Ponty (2002) recommended that the focus of a phenomenological interview was to encourage description that was as inclusive and exhaustive as possible, carefully avoiding any attempts to analyze or explain within the moment. Kvale and Brinkman (2009) recommend twelve qualitative research interview techniques based on phenomenological principles that impelled themes arising from the interviews beyond a descriptive purpose. These themes include specificity, awareness of meaning shifts and changes, and holistic relationship of the participant to their life world. Additionally, Kvale and Brinkman suggest that a qualitative interviewer engage in deliberate naiveté as well as mindful consideration of co-creating a positive experience. Approaches such as those detailed by Merleau-Ponty and Kvale and Brinkman corroborate rich descriptions as the primary goal of qualitative interviewing (Denzin & Lincoln, 2012).  In my original proposal and consent, I allowed for the possibility of a second interview. Per qualitative recommendations, I anticipated that additional interviews might be needed depending on the research situation. Before exiting the interview, I assured the participant that they were free to decline further participation at any time. Once the interview was completed, I immediately proceeded to a private setting to write field notes in the manner of a reflective journal. This journal was valuable in establishing a traceable pathway of my thinking and reflection on the interview experience. This journal was used to document a short reflexive synopsis of how the interview unfolded, as well as to record initial analytic insights arising and to capture additional questions or items to consider. In some cases, follow-up conversations over the phone and email clarified points garnered in 42  the first interview for additional clarification or elaboration as my interpretation of what I was learning through these interviews evolved.    Data Management Within a short time after the interview, I had the interview recordings transcribed verbatim. Any collateral data referenced or collected was scanned (or downloaded as a digital image) and added to the NVivo™ database in digital form. This collateral material was also documented in the field notes in a way that reflected both the stated intention and the context in which it was shared by the participant. Interview recordings were transcribed verbatim either by the researcher (myself) or by a paid transcriptionist following recommendation by Thorne (2008). In the case of an outside transcriptionist, I listened to the recordings while reviewing the word-by-word transcription to ensure accuracy and (as closely as possible), intention and context. This method is part of a naturalistic transcription technique which attempts to preserve the "talk-in-interaction" (Hutchby & Wooffit, 1998, p. 13). These transcribed interviews were uploaded into the NVivoTM software program. The ability to focus on words, sounds, and periods of silence rather than just printed text is a technique that offers the qualitative researcher opportunity for deeper reflection and enhanced engagement with the interview material as narrative and storyline. The process of transcription has largely been ignored in qualitative research, and yet its presence can have a startling impact on the entire qualitative process. Oliver, Serovich, & Mason (2005) describe how a qualitative research team misinterpreted the text-written sniffles and grunts made by an interviewee during a taped interview transcribed by a third-party transcriptionist using naturalistic transcription techniques. The research team enthusiastically discussed what the sniffles meant in the context of the spoken words, thoroughly analyzing how and which words overlapped the disturbing sounds. Finally, entertained by the exchange, the interviewer chimed-in that the sounds had nothing to do with the interview topic at all. Instead, the interviewee had a terrible cold. Therefore, I believe the nature of the existential query being undertaken in this study necessitated locating the transcription process within the interviewer/interviewee context in order to create a naturalistic transcription text. The research questions should, ultimately, drive the choice for transcription in the same way they drive the overall research process (Oliver, Serovich, & Mason, 2005). If a denaturalized text 43  is needed for further analysis, this can easily be achieved using the original transcription project. However, my deep-knowing of the interview context, conversation, collateral data, and subsequent involvement in the transcription process extended my understanding of the material in a way that would not have otherwise been possible.  Layer 5: Thoughtful Clinician Interviews As a fifth layer of data collection, I engaged in directed interviews with experienced oncology clinicians. The driving question for this layer of data collection and analysis was: How can insights of experienced oncology clinicians around issues of identity for haematology oncology patients contribute to an understanding of this phenomenon? Corroborating with the application potential prescribed by interpretive description, the research products of any nursing study should be sound enough that a nursing clinician would find them sensible. Subsequently, these products of research (called “tentative truth claims”) would be consistent with the nursing process (assessment, diagnosis of a problem, planning interventions, implementation, and evaluation of interventions) as well as “keeping with recognized standards of evidence, logic, and ethics” (Thorne, Reimer Kirkham, & O’Flynn-Magee, 2004, p. 7). The purpose of including experienced oncology clinicians in this study was multifactorial.  First, the clinician has both an etic-outsider (to the self) lens as well as an emic-insider (within the healthcare system) focus that contributed an additional layer of data to supplement and complement previous layers of findings. Interviewing experienced clinicians with intense bedside familiarity of haematological oncology patients was also intended to impart supplementary ways to consider an evolving understanding of the process and practical meaning of identity for blood cancer patients.  Further, I expected that experienced clinicians would have direct knowledge of the relative frequency of various thematic patterns within their clinical practice. My assumption (based on professional experience) was that clinicians who demonstrate thoughtful interest and concern of the patient-as-person can serve as exceptionally valuable resources in generating reflective and practical commentary with respect to any recommendations or implications for direct patient care interventions. I also framed this layer of research with the underlying belief that clinicians would have the specific and unique ability to critically contemplate the phenomena of expressed patient identity concerns and provide novel input that would refine and 44  strengthen my thinking. The ability to utilize such a rich resource allowed the disciplinal lens of nursing to be fully present as a tool to augment the qualitative analysis process. Finally and as a methodological factor, interviewing clinicians served to strengthen study credibility indicators (Thomas & Magilvy, 2011). According to Thorne (2008), such member checking helps build confidence towards the dependability of the research findings.  Qualitative research concerns around reliability and validity include meaning-in-context, recurrent patterning, and confirmability (Leininger, 1994; Lincoln & Guba, 1985; Patton, 2002; Tobin & Begley, 2004). As a mindful researcher, the goal of generating high quality research underpinned this entire project.      Sampling Strategy  A purposeful sample of 7 highly experienced haematology oncology clinicians was recruited for this layer of the study. This sampling seemed reasonable in building and reinforcing credibility of this project. The participants were considered experienced in the sense that they:  a) had over five years of full-time experience in care of the haematology oncology patients,  b) were working regular hours as a bedside nurse in either an inpatient  haematology oncology unit (including a transplant unit) or in the outpatient day clinic  setting, or in a work capacity where they regularly interact with this patient  population, and  c) expressed keen interest in psychosocial issues within day-to-day operations of  patient care work.  d) were nurses or members of the interdisciplinary team working closely with haematology oncology patients in a way that allowed them access to the patient experience. In this study I interviewed one social worker with extensive experience and knowledge about haematology oncology patients.    45  Interview Techniques After all four preceding layers of research were completed, I drafted an interview guide to ensure consistency of responses around certain key themes and ideas that had arisen thus far in the study (see Appendix C). One-on-one interviews with highly reflective and experienced clinicians were a means to advance findings further, moving from single case experiences  to more inclusive meta-reflections based on exposure to multiple cases over time, thereby seeking greater understanding of the identity phenomenon as it appears within  the cancer care environment. I conducted these interviews both face-to-face and over the phone. The information and consent form presented to clinicians reflected the key points that were also included on the document used for the patient participants (see Appendix E). Field notes (via reflective journaling) were made during and immediately following the interview. These interviews were digitally recorded and transcribed shortly after the interview ended. Directed questions and comments around findings from the first four layers of data collection and analysis were discussed when appropriate, but generally questions and themes were drawn from, and paralleled, the primary patient interviews. For example, I had anticipated making general statements about identity as well as reporting some of my impressions and evolving thematic analysis to these clinicians. I then asked them to reflect on this analysis with the aim that their input would enlarge upon, critique, and/or expand my thinking, accepting that each had wide experience but also a unique subjective view of my overall research focus. The clinician participation in this study provided an added perspective to the experience of patients with blood cancers, and this layer of research is more fully explored in chapter 8.  Phase Two: Supplementary Strategies for Data Collection    Self-Reflective Journal (Field Notes)  The use of a reflective journal by the researcher is commonplace now in qualitative research data collection strategies (Finlay, 2002; Ortlipp, 2008). While researchers may engage in the reflective journaling process in different ways, it is generally agreed upon as part of the work of qualitative research that the journal will be used during and after interviews to collect researcher reactions, contemplations, ideas, questions, and notes that 46  require follow-up with the participant. Reflective journaling by the researcher is considered a key component for generating transparency in the research process, providing “a research trail of gradually altering methodologies and reshaping [of] analysis” (Ortlipp, 2008, p. 696). This journal can also become a critical component of the data analysis process as a technique for avoiding bias and increasing reliability and rigor (Rolfe, 2006; Thorne, 2008). Within the context of this study, reflective journaling (field notes) was undertaken with both the patients and the clinicians (layers 4 and 5).  Narrative Development and Analysis  Narrative analysis can also be a valuable tool for examining the cancer experience. The entire story around self-embodiment and identity is a narrative about the patient journey with cancer, so it makes sense that the bulk of primary data in this research was embued with a narrative quality. Spector-Mersel (2010) advocated for a narrative paradigm as a unique mode for investigating intimate human moments, asserting that narrative inquiry was “full-fledged research” that linked the “hows” with the “whats” on the premise of “the nature of reality and our relationships with it” (p. 204). Methods associated with narrative inquiry allow for a detailed examination of the organization and substance that makes up a personal story, giving reference to psychological, sociological, and historical referencing through an interplay of language and meaning (Wells, 2011).  The narrative chosen by an individual is, in the constructivist sense, the story that is “settled on as ‘being’ our lives” (Bruner, 1987, p. 709). The use of metaphor is particularly functional in the work of Laranjeira (2012) around the effects of a cancer diagnosis on self-identity. After intensive narrative inquiry research, Laranjeira advocated for metaphor as the most useful tool employed by a cancer patient in bridging the world of technology and treatment. While the notion of the Ricoeurian narrative perspective of hermeneutics is appealing, I believe that this type of inquiry can only reveal a portion of the larger picture of the disease experience. Narrative inquiry, then, is a useful tool for qualitative research but requires the creation of narrative (rhetoric) which can be heard, read, or viewed and then strategically analyzed (Clandinin & Connelly, 2000; Leggo, 2008).  However, I caution that I am not specifically using narrative inquiry as a formal qualitative research method per Clandinin and Connelly. Portions of their methodological 47  argument and recommendation have proved useful in data collection and analysis, but this dissertation is not a narrative inquiry.10  Collateral Data During the primary interviews, other forms of data arose naturally as part of the highly personal and existential nature of the line of inquiry. Such data variants have been referred to as “collateral data” and include: a) patient journaling    b) ethnographic participatory visual methods such as photovoice (where the  participant is the photographer)  c) self-portraiting  d) sharing of family photographs  e) genealogical sharing (such as charts)  f) poetry  g) forms of artwork (besides self-portraits)  h) reference to books or articles they found helpful or informative  Due to the intensely personal and transitory nature of the self-as-being cancer, utilizing other forms of data within the interview context to assist in capturing notions of identity and disease embodiment enhanced the depth and richness of the data. For example, photo-narrative and art therapy has been used by researchers like DeShazer (2012) and Sibbett (2005) to explore embodiment after cancer diagnosis. Photo elicitation (known also as photo interviewing and photofeedback) is a strategy used by Oliffe and Bottorff (2007) with prostate cancer survivors to explore the experience of having the disease. In photo elicitation photographs usually taken by the participant (photovoice) are discussed during an interview in a way that is considered empowering and emancipating as participants can make their experiences visual. Oliffe and Bottoroff suggest that utilizing alternative methods such as photovoice in qualitative research can encourage participants to reveal a great deal more                                                           10 I had the pleasure of attending a full-day workshop with Dr. Clandinin in Edmonton, AB in 2012. While I find many aspects of this method (or as some now argue, paradigm) intriguing, I want to be very careful about appreciating aspects of Narrative Inquiry which have informed certain of my methodological application approaches with an awareness that I was not fully taking up the epistemological orientation of this specific  qualitative method. 48  about their illness experience than would normally be granted (p. 856). Per interpretive description,  predetermined designation of such explicit methods at the beginning of research is thought to shape data collection strategies and analysis in ways that might be counterproductive towards engaging openly with the phenomenon in question (Thorne, 2008). Instead, I prioritized a natural conversation arising from the interview process to drive other methodological choices in a way that supported the goals of this project. I also maintained keen awareness that the use of such visible expressions of identity could be more representative of embodiment, thereby deviating from my stated intention to seek a more conscious, mental experience of identity. More on the collateral data collection and analytical process within the context of this research will be included in the discussion chapter (chapter 9).  Data Analysis  Qualitative research entails a process of inductive analysis whereby observations of individuals are used to generate knowledge about broader generalizations and theories (Denzin & Lincoln, 2012). Specific observations made by the researcher using various qualitative method and methodological traditions allows for the detection of regularities and themes, which can then be consolidated into tentative hypotheses. Content analysis, constant comparison, and thematic analysis can be utilized as data is collected and new interviews are planned (Sandelowski, 1995b).  ID strategy recommends that, in order for qualitative research to be successful and useful, immersion in the data should occur prior to initiating a formal coding process (Thorne, 2008). While I planned to follow coding guidelines to some degree within the data analysis portion of this research project, detailed line-by-line coding recommended by grounded theorists such as Strauss and Corbin (1998) was not appropriate and thus not undertaken. Instead, coding aimed for a more comprehensive, open-ended and theme-focused approach indicative of ID methodological flexibility. The goal for data analysis was generally broad-based coding occurring over several passes, each intended to penetrate further into the meaning and essence of the phenomenon under study.  In this way, data analysis was an evolving and active process inviting experimentation and creative thematic investigation (Thorne, 2008).  Demographic data was collected and entered the statistical 49  software program, SPSS.11 The use of NVivoTM software in this project was around data storage, coding, and linking, and this application of software provided further opportunities for data analysis. NVivoTM allowed digital photographs and other images to be linked to specific interview transcript data. These multimedia sources were also coded mimicking the same coding structure used for text. Query functions in NVivoTM generated cross-referencing between text and images that further encouraged fresh or alternative methods for analyzing content.  Issues of Qualitative Rigor Interpretive description aligns with the positioning of validity, bias, and reliability under the umbrella of “qualitative rigor” as originally proposed by Lincoln & Guba (1985). Thorne et al. (1997) noted that “from our perspective, a caring discipline such as nursing has a special obligation to ensure that the rigor of its research findings is above reproach” (p. 176). Rigor is upheld by systematic avoidance of things that can result in potentially deficient analysis such as “going native,” “premature closure,” “bloodless findings,” and “overdetermination of pattern” (p. 176).  Reflective journaling, as well as thoughtful coding and constant comparison during data collection and analysis, are methods used to ensure qualitative rigor. Within ID research, “the best interpretive descriptions will pass what has been referred to as the ‘thoughtful clinician’ test” and integrity of the interpretive process “will always generate more credible findings than will rigid adherence to the ‘gamesmanship’ of rigor” (Thorne, Reimer Kirkham, & O’Flynn Magee, 2004, p. 17).   Oncology Clinician Interviews   The semi-directed interviews with experienced clinicians comprise important components towards rigor and validity. Although not the main motivator for accessing the knowledge held by these clinicians, being able to discuss findings from previous research layers was useful in generating knowledge around identity and the patient experience. A small sampling, based on criteria outlined below, seemed reasonable in building and reinforcing credibility of this project. This was particularly important because of the applied                                                           11 SPSS is a statistical program used primarily for quantitative research. While my project is strictly qualitative, the specific demographic functions and chart-creation abilities of SPSS have made me favour it over those available in NVivo. 50  nursing lens applied to all aspects of this research (from research question development to strategies to data collection and analysis). Qualitative research concerns around reliability and validity include meaning-in-context, recurrent patterning, and confirmability (Leininger, 1994; Lincoln & Guba, 1985; Patton, 2002; Tobin & Begley, 2004). As previously stated, knowledge translation objectives for this research emphasized clinical nursing interventions as a raison d’être. Interviewing experienced clinicians possessing bedside familiarity with a wide variety of oncology patients was intended to provide understanding around the process and practical meaning of identity for blood cancer patients. Clinicians in particular who demonstrated thoughtful interest and concern over the patient-as-person were exceptionally valuable resources in generating reflective and practical commentary with respect to recommendations for practice implications arising from the data analysis and subsequent findings that develop within this study.   Issues of Qualitative Validity and Credibility Since ID allows for multiple methods and methodologies to be employed in the research process, grounding validity (or reliability) in some manner is necessary to justify how using techniques from diverse disciplines can be combined to form a credible research study. Thorne (2008) suggests four areas which enhance credibility in ID-driven studies. First, epistemological integrity suggests the research process must stem from research questions that are consistent with chosen methodological perspectives. To achieve this, ID methodology adopts basic philosophical underpinnings of naturalistic inquiry as a theoretical framework, thus solidifying epistemological agreement (Thorne et al., 2004, p. 5). Second, representative credibility reflects a notion of validity in which the suggested truth claims of a research project remain consistent with sampling methods. Triangulation can add critical value under this point (Tobin & Begley, 2004). Third, analytic logic is associated with reliability (or replicability) whereby an audit trail allows for potential future scrutiny of data. The reflective journal is an excellent example of this (Thorne, 2008). Finally, interpretive authority on the part of the researcher is critical to establish study credibility. Interpretive authority also speaks to honest disclosure of bias and the ability of the researcher to create trustworthy interpretations. Methods such as concept mapping, memoing, and reflective 51  journaling (as discussed in the previous section) are means to decrease researcher bias and increase the credibility of a research inquiry, and each had a place within this study. Additional methods recommended to improve credibility in ID research include moral defensibility, disciplinary relevance of the research question, the pragmatic obligation to create relevant research projects, contextual awareness of the researcher, and pursuing a goal of probable truths (as opposed to absolute truths). Ultimate responsibility for credibility falls to the researcher in choosing the ‘best’ methods to address a specific question. Ravitch and Riggan (2012) capture this notion expertly by stating that “ultimately, the utility and impact of your research will be determined by what you have to say, how clearly you say it, the strength of your argument, and the evidence that supports it” (p. 159). This phrase aligns with Lindlof and Taylor (2011) who assert that “researchers do not use methodological instruments. They are the instrument” (p. 9). The integrity of the researcher-as-person and as-scholar becomes the test or measure for reliability and validity in qualitative research. Within the context of ID and generic qualitative framework, reason and rigor are therefore integrated. The integrity of this research lies with careful data collection, thoughtful data analysis, and ethical representation of the interpretive findings.   Ethical Considerations Procedural Ethics  Tracy (2010) notes that ethical considerations are not just a means to an end in qualitative research, but that ethics are the ultimate purpose of inquiry. Secondary research phase data inquiry was contained within the ethical approval for work by the BC Cancer Care Communication research program. Primary research phase ethical approval was received from multiple entities including the University of British Columbia (UBC) Behavioural Sciences Screening Committee (specifics on this are in chapter 8).  All data collected including the digital audio recordings, any graphic art materials, photographs, hardcopy transcripts, and other materials that could be considered sensitive have been kept confidential and in a locked filing cabinet accessible only by the researcher. Participant anonymity has been mindfully maintained throughout the transcription process using code names on all field notes, transcripts, audio recordings, and associated file materials. Upon the completion of the research project, interviews that have been consented 52  in their entirety will be incorporated into a master database through collaboration with the Communication in Cancer Care Principal Investigator. These interviews are unidentifiable and kept confidential as part of this database. Additional materials collected as part of the research project will be retained for a period of at least 10 years, so the findings can allow for secondary analysis with possible incorporation into knowledge translation activities and publications.  Relational Ethics Due to the personally intrusive nature of qualitative inquiry, discussions around relational ethics require that researchers are ever-mindful of their “character, actions, and consequences on others” (Tracy, 2010, p. 847). Researchers should engage in reciprocity with participants in a way that is mutually-beneficial and positive. Gonzalez (2000) suggests that the researcher-as-human is an investigative tool, and as such, has potential to become personally engaged with participants in a way that violates a professional research relationship. In the case of highly-personalized and sensitive topics such as identity, embodiment, and spirituality there exists a risk that participants can become emotionally upset or unstable (Clancy, 2011). Cancer patients considered to be persons who are potentially vulnerable, therefore necessitating additional ethical considerations (McIlfatrick, Sullivan, & McKenna, 2006). As a researcher, during interviews I was able to provide emotional support and remind the participant that they had the right to terminate involvement in the research at any time. I was also prepared to offer referrals for professional counselling, additional information, or support; none of the participants asked for such material.  As a practicing nurse, there was also a risk that participants would assume a role as patient or have unrealistic or confused expectations of a nurse-as-researcher role (McConnell-Henry, James, Chapman, & Francis, 2009). Since I work as a registered nurse clinician for the inpatient unit of the Leukemia/Bone Marrow Transplant program of BC, it happened that I knew the names of several participants and had been working at the time they were being cared for in the BMT program. Aluwihare-Samaranayake (2012) discusses possible ethical issues for both the researcher and participant that can arise from the researcher-as-clinician role. In this case, reflectiveness and critical consciousness are strategies promoted to maintain a transparent and ethically-responsible research process. 53  Steinke (2004), a clinical nurse specialist (CNS) researcher, emphasizes potential ethical dilemmas developing from confusion over the researcher’s role when in the clinical environment. She recommends that “the nurse must cle