THE EMERGENCE OF NEGOTIATED FAMILY CARE IN INTENSIVE CARE A GROUNDED THEORY APPROACH Susanne Kean Thesis presented in fulfilment of the requirements of the degree of Doctor of Philosophy THE UNIVERSITY OF EDINBURGH 2007 Abstract This thesis describes a qualitative enquiry into the experiences of families visiting an adult intensive care unit (ICU) during a critical illness of a family member and nurses’ perceptions of families in this environment. A Grounded Theory approach was taken. Nine families (12 adults, 12 young people) with a family member in intensive care and twenty intensive care nurses in five focus groups contributed their experiences to the study through group interviews. Families described the admission of a family member as a traumatic event. The core experiences of families which emerged in the study revolved around uncertainty. Drawing on Davis’ (1963/1991, 1966) concepts of ‘clinical uncertainty’ and ‘functional uncertainty’ a number of strategies families and young people developed in dealing with the situation were identified. ‘Clinical uncertainty’ captures the unknown and unknowable aspects of critical illness. The ‘Functional uncertainty’ category emerged later in the research process and brings to light management of information disclosure for functional gain as a communication strategy. Functional uncertainty was identified in communications between nurses and families and between parents and children within families. Moreover, young people used the same ‘functional uncertainty’ strategy when disclosing information to peers within the school environment. ‘Keeping normality in life’ and ‘fishing for information’ and the associated strategies were identified as direct responses of young people to clinical and functional uncertainty. The strategies identified provide new insights into how young people process a critical illness event in their families. This emphasises the importance of listening to young people’s voices and the need to include young people in future studies. ‘Nursing in public’ emerged as an overarching theme within the data from nurses’ interviews. The contrasting interests of nurses and families in the context of critical illness became evident when open visiting policies were discussed. The promotion by policy makers and nursing scholars of a patient centred health care service and thus the implicit integration of families into care challenges nurses to adapt their working practices. Whilst this study provides evidence for the importance of integrating families into care it also shows the needs of nurses are in danger of being marginalised. Respecting the needs of families and nurses the question becomes how best to balance the competing needs of both groups. It is suggested that a ‘partnership in care’ approach which is firmly based on negotiations between nurses and families under the leadership of nurses will allow for the emergence of family care in intensive care, to the benefit of patients, families and nurses. II Declaration I herby declare that this thesis has been composed by myself and that the research on which is reports is my own work. Susanne Kean November 2007 III Acknowledgements I am very grateful to many people for their support during this research. First and foremost I would like to thank the families and nurses who participated in this study for sharing their experiences. Their rich contributions are the foundation of the analysis presented here and will hopefully lead to improvements in support for families faced with critical illness. I would like to thank the management of the study unit and the local NHS Trust for providing access for the study. I would like to thank my supervisors, Professor Kath Melia and Dr. Dorothy Whyte for their support, guidance and encouragement throughout the study and particularly for their critical comments on earlier drafts. My thanks also go to friends and colleagues who provided words of encouragement and useful comments and discussions on my work. A special thank you goes to my sister-in-law, Dr. Margaret Kean, who proof-read the thesis. Finally, a big thank you to my husband, Tom and our two beautiful daughters, Kim and Lisa, who had to make many sacrifices while I was working on this thesis. Their support and understanding made this work possible. IV Table of Contents ABSTRACT ............................................................................................... II DECLARATION......................................................................................III ACKNOWLEDGEMENTS ....................................................................IV TABLE OF CONTENTS ......................................................................... V GLOSSARY ..............................................................................................IX CHAPTER 1: INTRODUCTION ............................................................ 1 Introduction ..................................................................................................................1 Importance of the study................................................................................................1 The study ......................................................................................................................3 The context ...................................................................................................................3 Structure of the thesis...................................................................................................3 CHAPTER 2: LITERATURE REVIEW................................................ 5 Introduction.........................................................................................................................5 Search strategy..............................................................................................................5 Families’ experiences in intensive care .............................................................................5 Family needs research ..................................................................................................6 Impact of critical illness on families..........................................................................11 Experiences of families in ICU..................................................................................13 Families in nursing .....................................................................................................16 Sociology of childhood ..............................................................................................23 Conclusion ........................................................................................................................36 CHAPTER 3: METHODOLOGICAL ISSUES .................................. 38 Introduction.......................................................................................................................38 The study...........................................................................................................................39 Qualitative research....................................................................................................40 Researching groups: families and nurses...................................................................42 Families.......................................................................................................................49 Intensive care nurses ..................................................................................................60 Reflexivity in qualitative research .............................................................................64 Grounded Theory .......................................................................................................67 Using Grounded Theory.............................................................................................71 Epistemology..............................................................................................................71 Theoretical perspective ..............................................................................................71 Principles and practices in Grounded Theory............................................................73 Interviewing families and nurses as groups...............................................................81 Critique of focus groups.............................................................................................87 Critique of grounded theory.......................................................................................88 Summary...........................................................................................................................89 CHAPTER 4: STUDY PROTOCOL..................................................... 91 Introduction.......................................................................................................................91 V The research process ..................................................................................................92 Issues of quality in qualitative research...................................................................125 Summary.........................................................................................................................126 CHAPTER 5: FAMILY PROFILES................................................... 128 Introduction.....................................................................................................................128 The Calgary Family Assessment Model