DELIRIUM: THE LIVED EXPERIENCE CECILY POLLARD RN CMHN Graduate Diploma of Business (Professional Management) Submitted in fulfilment of the requirements for degree of Master of Nursing (Nursing & Midwifery H8A) University of Tasmania March 2014 STATEMENTS AND DECLARATIONS Declaration of Originality “This thesis contains no material which has been accepted for a degree or diploma by the University or any other institution, except by way of background information and duly acknowledged in the thesis, and to the best of my knowledge and belief no material previously published or written by another person except where due acknowledgement is made in the text of thesis, nor does the thesis contain any material that infringes copyright” Statement of Ethical Conduct “The research associated with this thesis abides by the international and Australian codes on human and animal experimentation, the guidelines by the Australian Government’s Office of Gene Technology and the rulings of the Safety, Ethics and Institutional Biosafety Committees of the University” Authority of Access This thesis may be made available for loan and limited copying and communication in accordance with the Copyright Act 1968. Cecily Pollard March 2014 ii CONTENTS STATEMENTS AND DECLARATIONS .......................................................... ii LIST OF TABLES .......................................................................................... vi LIST OF FIGURES ......................................................................................... vi ACKNOWLEDGEMENT ................................................................................ vii ABSTRACT .................................................................................................. viii CHAPTER ONE: INTRODUCTION and LITERATURE REVIEW ................... 1 1.1 Background to the Study ................................................................. 1 1.2 Literature Review .............................................................................. 9 1.2.1 An historical perspective of delirium ......................................... 13 1.2.2 Identification and pattern .......................................................... 17 1.2.2.1 Risk factors ................................................................................................... 20 1.2.2.2 Causes ......................................................................................................... 21 1.2.2.3 Delirium, dementia and depression .............................................................. 22 1.2.2.4 Poor outcomes ............................................................................................. 25 1.2.3 Professional skills ..................................................................... 26 1.2.4 Qualitative research .................................................................. 28 1.2.4.1 The nursing perspective ............................................................................... 28 1.2.4.2 The patient experience ................................................................................. 30 1.3 Conclusion ...................................................................................... 33 CHAPTER TWO: METHODOLOGY ............................................................. 35 2.1 Descriptive Qualitative Approaches ............................................. 36 2.2 Grounded Theory ........................................................................... 41 2.3 Methods ........................................................................................... 47 2.3.1 Recruitment of participants ....................................................... 47 2.3.2 Inclusion and exclusion criteria ................................................. 50 2.4 Ethics ............................................................................................... 51 2.5 Data Collection ............................................................................... 52 2.5.1 Data analysis ............................................................................ 53 2.5.2 Strategies used to ensure rigour in the study ........................... 58 iii CHAPTER THREE: THE TERRIFYING EXPERIENCE OF LIVING THE DELIRIUM: .................................................................................................... 60 3.1 Living the Delirium and Living after the Delirium ........................ 60 CAMEOS ................................................................................................. 62 Daisy ...................................................................................................................... 62 Lance ...................................................................................................................... 62 Charlie ...................................................................................................................... 62 Gilbert ...................................................................................................................... 63 Gavin ...................................................................................................................... 63 Dorothy ...................................................................................................................... 63 Mabel ...................................................................................................................... 64 Ted ...................................................................................................................... 64 George ...................................................................................................................... 64 Alfred ...................................................................................................................... 64 Henry ...................................................................................................................... 65 3.2 Living the Delirium ......................................................................... 65 3.2.1 The suffering ............................................................................ 65 3.2.1.1 The feeling .................................................................................................... 66 3.2.1.2 The suspicion and mistrust .......................................................................... 67 3.2.2 The predicament ....................................................................... 70 3.2.2.1 Being trapped ............................................................................................... 70 3.2.2.2 To be abandoned ......................................................................................... 72 3.2.2.3 The dismissal ............................................................................................... 74 3.2.2.4 The disconnection ........................................................................................ 76 3.3 Living After the Delirium ................................................................ 80 3.3.1 How I was before ...................................................................... 81 3.3.1.1 Their strength ............................................................................................... 81 3.3.1.2 Why was this happening to me? .................................................................. 83 3.3.2. How am I now? ......................................................................... 85 3.3.3 How have I been left? ............................................................... 87 3.3.3.1 The remaining scars ..................................................................................... 87 3.3.3.2 The strength of healing................................................................................. 90 CHAPTER FOUR: DISCUSSION, IMPLICATIONS, RECOMMENDATIONS AND CONCLUSION ...................................................................................... 94 4.1. Discussion of the Main Findings ................................................... 96 4.1.1 Living the delirium ..................................................................... 96 4.1.2 Living after the delirium .......................................................... 101 4.2 Implications and Recommendations for Clinical Practice ........ 105 iv 4.2.1 Living the delirium ................................................................... 105 Recommendation One ............................................................................................... 106 Recommendation Two ............................................................................................... 107 Recommendation Three ............................................................................................. 109 4.2.2 Living after the delirium .......................................................... 109 Recommendation Four ............................................................................................... 109 Recommendation Five ............................................................................................... 113 4.3 Limitations of this study .............................................................. 113 4.4 CONCLUSION ............................................................................... 114 REFERENCES ............................................................................................ 118 Appendix 1: Information Sheet ............................................................. 125 Appendix 2: Consent Form.................................................................... 127 Appendix 3: Interview Guide ................................................................. 128 Appendix 4: The Confusion Assessment Method Instrument ............ 129 Appendix 5: The Mini-Mental State Exam ............................................ 131 v LIST OF TABLES Table 1 Summary of interventions to prevent delirium ....................................................... 7 Table 2 Summary of literature review ............................................................................... 10 Table 3 Diagnostic Criteria DSM-IV-TR ............................................................................ 15 Table 4 Summary of the types of delirium and presentation ............................................ 20 Table 5 Comparison of the features of delirium, dementia and depression ..................... 24 Table 6 Summary of design features proposed by Sandelowski (2000) .......................... 39 Table 7 Six strategies for data analysis ............................................................................ 40 Table 8 Criteria for assessing quality of research ............................................................ 41 Table 9 Summary of the stages of coding ........................................................................ 46 Table 10 Inclusion and exclusion criteria ............................................................................ 50 Table 11 Participant and interview details .......................................................................... 51 Table 12 Living the delirium ................................................................................................ 56 Table 13 Living after the delirium ....................................................................................... 57 LIST OF FIGURES Figure 1 Mapping method identifying the major and subthemes ....................................... 12 Figure 2 Recruitment process ............................................................................................ 49 Figure 3 Open coding process ........................................................................................... 55 Figure 4 Example of coding process ................................................................................. 61 vi ACKNOWLEDGEMENT I would like to extend my sincerest gratitude to the eleven people who shared their time and experiences with me. You provided open and honest insight from a unique perspective. I am indebted to you for allowing me to discuss your experiences of being delirious. I wish to thank my supervisors, Professor Mary Fitzgerald and Dr. Karen Ford for their guidance and patience through my academic journey. Jill and Tina, thank you for your editorial expertise and encouragement. Thank you, Rob and Trish, for your belief and support in the project from the beginning to the end. My friends and you know who you are, thank you for your encouragement and assistance throughout this journey. Finally, I always knew the spirit of my late partner and my late parents followed me in my journey. vii ABSTRACT Delirium: The Lived Experience Delirium is one of the most serious and prevalent cognitive disorders occurring in the older person post-surgery. Delirium is a potentially preventable and reversible cause of post-operative functional disability, morbidity and mortality. As well as the significant impact for the person, delirium also results in increased health care costs and poses a substantial challenge for clinicians. Medical and nursing textbooks concentrate on diagnosis, reduction of the modifiable risk factors and treatments. Nursing research has examined documentation, nursing skills and lack of education on how to nurse the delirious patient. However, little research has focused on the patient’s experience of incomprehension and various feelings of discomfort during an acute episode of delirium. The importance of researching the patient’s experience of delirium provides health care staff insight into the experience, enables understanding and acknowledgement, and supports improving evidence-based care to meet the needs expressed by the delirious patient. The aim of this study was to explore the lived experience of delirium in the acute inpatient orthopaedic population with the anticipation that increased understanding and knowledge of this lived experience will support the development of evidence-based nursing care management of the delirious patient. This study examines the experiences of eleven patients who described their experiences of delirium in semi-structured interviews. The interviews were transcribed verbatim, and analysed using the techniques of qualitative description (Sandelowski 2000) and the grounded theory coding process described by Glaser and Strauss (1967). The findings of this study provide an insight into the incomprehensible emotional pain suffered by patients while they were delirious and the disparate feelings of remorse, guilt and shame they experienced after the episode of delirium. It is hoped that the findings of this study will contribute to the care of the delirious patient post-surgery. Following this study, it is apparent that more research is required into the long-term impact of the experience of delirium. viii CHAPTER ONE: INTRODUCTION AND LITERATURE REVIEW 1.1 Background to the Study Hospitalisation holds many risks for the elderly inpatient, and these risks often result in complications unrelated to the primary reasons for being admitted to hospital. Delirium is one of those complications that are seen frequently in the elderly acute hospital population. Delirium is a medical emergency that may have very serious outcomes for patients, health care staff and hospital systems if left untreated. Older people with hip fracture, dementia or a serious illness are at a greater risk of an episode of delirium when admitted to hospital (Harding 2004; Segatore & Adams 2001; Ski & O'Connell 2006). Delirium is a serious common clinical syndrome, with an acute onset and a fluctuating course over a short period (American Psychiatric Association [APA] 1994; Inaba-Roland & Maricle 1992; Meagher 2001; Rapp 2001). Symptoms include disturbances to consciousness, cognitive function, and perception and the condition is associated with poor clinical outcome (Bruce et al. 2007; McAvay et al. 2006; Robertson & Robertson 2006). Medical literature describes how to prevent, recognise, assess and treat delirium. Yet there is minimal description of how a delirious episode impacts on the patient. The purpose of this study is to clarify and record the experience of an acute episode of delirium from a patient’s perspective. 1 This study of orthopaedic patients and their lived experience of a delirious episode post-surgery will be presented in four chapters. Chapter One includes a brief description of delirium and the literature review regarding delirium and the lived experience of delirium. Chapter Two presents the research question, rationale for the design chosen for the study, tools and process used for participant recruitment, ethical considerations and data analysis. Chapter Three provides the results of the study. Finally, Chapter Four provides a discussion of the study results and implication for nursing care. Delirium is an acute condition with poor outcomes for patients and family carers. The numbers of older patients with delirium is likely to increase relative to population increase over time, as age is a strong risk factor for the development of delirium. The research consistently suggests that older people who enter hospital are at risk of developing delirium (Adamis et al. 2007; Harding 2004; Inaba-Roland & Maricle 1992; Segatore & Adams 2001). The Australian Orthopaedic Association National Joint Replacement Registrar Annual Report 2011/12 reported that 85,000 joint replacements had been undertaken in the previous year and the ages of people undergoing this surgery ranged from 68 to 73 years of age (Australian Orthopaedic Association 2012). Additionally, the Ski and O'Connell (2006) study identified Australia’s fastest growing population group as the older adult aged 85 and over and this age predisposes them to developing delirium when admitted to hospital. The experience of delirium in an increasingly aged population may have devastating long-term effects on health outcomes and quality of life for this older population (Flinn et al. 2009; Milisen et al. 2002; Robertson & Robertson 2006). 2