Using social constructivist grounded theory to explore how people come to use hospice day care services: a theory of transience and transition Volume I F. Wilson Ph.D. October 2017 Using social constructivist grounded theory to explore how people come to use hospice day care services: a theory of transience and transition By: Fiona M Wilson A thesis submitted for the partial fulfilment of the requirements for the degree of Doctor of Philosophy Faculty of Medicine School of Nursing & Midwifery October 2017 Volume 1 Abstract Using social constructivist grounded theory to explore how people come to use hospice day care services: a theory of transience and transition Background: Choice and autonomy are key principles within palliative care in the UK and are enshrined within a number of health policy documents from 2008 onwards. However, it is unclear how people enact choice around their end of life care, particularly with regard to using hospice services. Aim: This study aims to explore patient, carer and staff perceptions of choice and decision-making in accessing a hospice day unit. Method: This study uses a social constructivist approach to grounded theory to explore perspectives. Fifteen patients and six carers participated in one-to-one semi- structured interviews using a PICTOR approach. Twenty staff, including hospice and referring staff, participated in nine one-to-one interviews and two focus groups. Transcribed interviews were analysed using an iterative process of coding, memoing, and development of core categories. Results: The overarching theme of ‘transience and transition’ captures that access to a hospice day unit is an uncertain and transient journey, with the ultimate transition being death. Staff perceived their role as one of intuitively ‘being there’, however professional constructs of need indicated a more ‘managed’ approach to supporting care. Patients responded to the transient nature of transition by focussing on the certainties of living and dying, particularly supporting others and managing everyday concerns. Carers experienced transience and transition with a sense of presentiment, exclusion and loss. i Health literacy around palliative care and choice was limited in all three perspectives illustrating mixed understandings around hospice services. Conclusion: Essentially dying is not a passive transition but requires effortful and active engagement in supporting others, whilst also managing the requirements of everyday living whilst dying. The disruptive and emotional transition to hospice care challenges notions of choice, decision-making capacity, resulting in a ‘managed’ approach to care decisions. Acknowledging the uncertainty of dying whilst supporting individuals to manage everyday life, as well as an emphasis on relational care would help to meet patient and carer needs. Greater transparency, integration and awareness of services could facilitate transition and agency. ii Acknowledgements I would like to take this opportunity to thank the many people who have supported this work in so many different ways, and without whom this study would not have been possible. I am enormously humbled and indebted to the patients, carers, and hospice team as well as the staff at the oncology unit, who gave their precious time and expertise to help me in this work. Their stories and voices will stay with me forever and I offer a heartfelt ‘thank you’. I also thank my very patient supervisory team who have encouraged, cajoled, and coached along the way including: Professor Ingleton, Dr. Gardiner; Professor Gott and Professor Seymour, and not least Kate Chadwick. I would also like to thank Tracey Moore and the department for their support, particularly over the last year. Thank you too to my running pals (Sue & Shelagh), my SHU colleagues and office colleagues who have cheered me along the way and kept me going. Finally, I would like to thank my family, especially Merryn and William who have had to wait, yet again, for their old mum to cross the finish line. Fiona Wilson 2017 iii Presentiment is that long shadow on the lawn By Emily Dickinson Presentiment is that long shadow on the lawn Indicative that suns go down; The notice to the startled grass That darkness is about to pass. iv Abstract .............................................................................................................. i Acknowledgements ......................................................................................... iii Figures and Tables ................................................................................................. x Glossary of Key terms ..................................................................................... xi Chapter 1: Introduction ................................................................................... 1 1.1 Introduction ....................................................................................................... 1 1.2 Personal and professional motivation ............................................................. 1 Chapter 2: Key concepts .................................................................................. 8 2.1 Definitions of palliative care ............................................................................. 8 2.2 A background to hospice services in the UK ................................................ 11 2.3 Autonomy and Choice in Palliative Care ....................................................... 15 2.3.1 A review of choice and autonomy in the context of 2013-2016 ................... 15 2.3.2 Autonomy as a concept .............................................................................. 17 2.3.3 Challenges to autonomy ............................................................................. 19 2.3.4 Tensions in supporting the ‘informed patient’ ............................................. 19 2.3.5 Choice and prognostication ........................................................................ 20 2.3.6 Hope and Autonomy................................................................................... 21 2.3.7 Autonomy and the nursing role ................................................................... 23 2.3.8 Autonomy and Power ................................................................................. 24 2.3.9 Challenges to individual autonomy ............................................................. 26 2.4 Relational autonomy ....................................................................................... 28 Chapter 3: Review of the literature ................................................................ 30 3.1 Introduction ..................................................................................................... 30 3.2 The contested literature review...................................................................... 30 3.3 Phase One: January 1998- February 2010 ..................................................... 31 3.4 Phase Two: March 2010-September 2016 ..................................................... 35 3.5 Key themes from Phase One and Phase Two ............................................... 36 3.5.1 Patient and Carer Perceptions of place of care .......................................... 37 3.5.2 Caregiver support ....................................................................................... 39 3.5.3 Funding and resources ............................................................................... 41 3.5.4 Inequalities and inequity in accessing hospice services ............................. 43 3.5.5 Timeliness of information giving ................................................................. 45 3.5.6 Dissonance in service providers and patient and carer understandings of services ............................................................................................................... 47 3.6 Discussion ....................................................................................................... 49 3.7 Conclusion ...................................................................................................... 50 Chapter 4: Methods & Methodology .............................................................. 72 4.1 Introduction ..................................................................................................... 72 4.1.2 Social Constructionism ............................................................................... 72 4.1.3 Grounded Theory ....................................................................................... 74 4.1.4 Social Constructivist Grounded Theory (SCGT) ......................................... 76 4.2 SCGT as method ............................................................................................. 79 4.2.1 Reflexivity in SCGT .................................................................................... 79 4.2.2 Memos in SCGT ......................................................................................... 80 4.2.3 SCGT and Focused Coding ....................................................................... 81 4.3. Methodology in practice ................................................................................ 82 4.3.1 Research setting ........................................................................................ 82 4.3.2 Study design .............................................................................................. 84 4.3.3 Ethical considerations: ..............................................................................