University of Huddersfield Repository Rodriguez, Alison We are here for a good time not a long time: Being and caring for a child with a life-limiting condition Original Citation Rodriguez, Alison (2009) We are here for a good time not a long time: Being and caring for a child with a life-limiting condition. Doctoral thesis, University of Huddersfield. This version is available at http://eprints.hud.ac.uk/id/eprint/6963/ The University Repository is a digital collection of the research output of the University, available on Open Access. Copyright and Moral Rights for the items on this site are retained by the individual author and/or other copyright owners. Users may access full items free of charge; copies of full text items generally can be reproduced, displayed or performed and given to third parties in any format or medium for personal research or study, educational or not-for-profit purposes without prior permission or charge, provided: • The authors, title and full bibliographic details is credited in any copy; • A hyperlink and/or URL is included for the original metadata page; and • The content is not changed in any way. For more information, including our policy and submission procedure, please contact the Repository Team at: [email protected]. http://eprints.hud.ac.uk/ ‘We are here for a good time not a long time: Being and caring for a child with a life-limiting condition’ ALISON MARIE RODRIGUEZ A thesis submitted to the University of Huddersfield in partial fulfillment of the requirements for the degree of Doctor of Philosophy The University of Huddersfield January 2009 Acknowledgements I would like to thank all of the professionals, children and parents who took part in this research, for their time, their experiences and their thoughts. I have guaranteed their anonymity so cannot acknowledge them personally, but I hope I have done justice to their accounts. This thesis has been a journey for me and what I have learnt over the years has been invaluable. Lessons learnt from the participants of this study, the loss of a partner, close family members, and the birth of my gorgeous daughter Iris, have each allowed a more full appreciation of life and of the impact of life-limiting illness. It is all encompassing; relationships change, roles shift, and a sense of meaning and purpose become all the more prominent. Love and happiness take a whole new meaning. These events and related conversations have helped shape my worldview. I share the following acknowledgements: ~ Professor Nigel King You are a guiding force. I marvel at your abilities – writing, editing, discussing and developing ideas. Your support and guidance have helped me so much. I hope that in time, I will be able to make such valuable contributions as you have made, to the field of applied psychological research and to the lived experiences of those within it. Thank you, I am indebted. ~ My husband, Yoan. You have endured many moments and your patience and understanding has persevered. ~ My daughter, Iris. Thank you for being patient with mummy doing this work. I promise that now I will have more time to play. ~ My Mum. Thank you for helping me with Iris. Without you helping me with childcare, I would not have been able to complete this work. ~ Antoni, and my good friends Michael, Maryam, Eva, Karen & Eamonn. You each have watched me struggle, cry, laugh and celebrate through the duration of this work. Your love and friendship means the world to me. I thank you all for ‘being there’. Life is what happens to you while you’re busy making other plans John Lennon 2 Abstract This research project sets out to explore the lived experience of Being and caring for a child with a Life Limiting Condition. This research uses van Manen’s (1990) conceptualisation of hermeneutic phenomenology that is both a research methodology and a method. The first empirical work is a preliminary study using focus groups with professionals. The findings of this work acts as a backdrop to the further two studies that involve interviewing, in-depth, twenty eight parents and five children. The second study details the parents’ lived experiences and the final study looks at five parent-child dyads and their combined lifeworlds. In keeping with the phenomenological methodology, data was analysed using Template Analysis (King, 2004). It is a rare opportunity to observe and speak with children with Life Limiting Conditions and so gain insight into their lives. Their vulnerability is often characterised by rare and difficult-to-diagnose conditions, significantly shortened life spans with compromised quality of life. For the participants, the experience of Life Limiting illness was not only personal, but was also transactional, communicative and profoundly social. The challenge is one of Being thrown into an abnormal unready world which compels one to consider the paradoxical temporality of the here and now. This brings recognition of being the same as others in a lived space, but also being different in a fundamental way that has a significant impact. The challenge is met by adapting to the environment to find new ways of Being. This research encourages readers to thoughtfully reflect on what is it like for these families and those involved in their care, and to consider practice improvements that address the triadic experience (of child, parent and professional). The full significance of such reflection will ideally promote further questioning and inquiry, in keeping with the always provisional nature of phenomenological inquiry. 3 Disseminated findings Papers 1. Rodriguez, A. & King, N. (2008) The lived experience of parenting a child with a life-limiting condition: a focus on the mental health realm. Palliative & Supportive Care. (In press). Oral Presentations 1. Rodriguez, A. June (2007) A Phenomenological investigation of the lived experiences of children with life-limiting conditions. Postgraduate Research Conference. School of Human & Health Sciences. University of Huddersfield. 2. Rodriguez, A. & King, N. June (2007) The lived experience of children with life- limiting conditions. The 10th Congress of the European Association for Palliative Care. Budapest. Hungary Poster Presentations 1. Rodriguez, A. & King, N. September (2008) Conducting interviews with children with life-limiting conditions: The methodological needs and nuances. The BPS Qualitative Methods Conference. The University of Leeds. 2. Rodriguez, A. & King, N. June (2008) Conducting interviews with children with life- limiting conditions: The methodological needs and nuances. The European Association for Palliative Care Research Conference. Trondheim. Norway. 4 Contents of Thesis CHAPTER 1: INTRODUCTION 11 1.1 My interest in the phenomena under study 12 1.2 Issues of definition 14 1.3 Policy 17 1.4 Practice 23 1.5 The structure of the thesis 25 CHAPTER 2: LITERATURE REVIEW 29 2.1 Perspectives on grief 29 2.2 The lived experience of life limiting conditions 37 2.2.1 Children’s understandings of death 39 2.2.2 Communication with children 41 2.2.3 Working with dying children and their families 49 A good death 52 Interactions with families 54 2.2.4 The family’s lifeworld 56 Support 57 Care 60 2.3 Summary and rationale for the current research 62 CHAPTER 3: PHILOSOPHICAL INFLUENCES 65 3.1 Constructionism 65 3.2 Introducing Phenomenology 66 3.2.1 Intentionality 68 3.2.2 Hermeneutics 69 3.3 The foundations of phenomenology as applied to research 71 5 CHAPTER 4: METHOD 80 4.1 My approach: Hermeneutic phenomenology 80 4.2 Overall design 84 4.2.1 Samples and recruitment 85 Professionals 85 Parents and children 86 4.2.2 Interview design and procedure 90 Professionals 90 Parents and children 92 4.2.3 Analysis 94 Template Analysis 95 Hermeneutic phenomenological writing 98 4.3 Ethics 100 4.4 Study quality 103 4.5 Conclusion 106 CHAPTER 5: THE PROFESSIONAL FOCUS GROUPS 107 5.1 Overview 107 5.2 Service planning, delivery and co-ordination 109 5.2.1 Planning and delivery of care and teamwork 109 5.2.2 Co-ordination and communication 113 5.2.3 Transition and funding 115 5.2.4 Support for parents and families 121 5.2.5 Staff needs 124 5.3 Specific service gaps 130 5.3.1 Respite and out of hours care 130 5.3.2 Challenging behaviour 136 5.3.3 Ethnic minorities 137 5.3.4 Bereavement care 138 5.4 Discussion 142 6 CHAPTER 6: THE PARENT INTERVIEWS 147 6.1 Overview 147 6.2 The beginning 151 6.2.1 The diagnosis and its immediate impact 151 6.2.2 New experiences and foci 153 6.3 An inner incentive and drive to provide 155 6.3.1 Maintaining control 155 6.3.2 Parent-professional relations 158 6.4 Trying to maintain life balance 165 6.4.1 Social life and employment 165 6.5 Feeling responsible for others 169 6.5.1 Sibling care 169 6.5.2 Open communication 170 6.5.3 Disrupted family functioning 171 6.6 Psychological effects 173 6.6.1 Social withdrawal 173 6.6.2 Depression, anxiety and fears for the future 175 6.7 Fear of reaching the bottom line 178 6.7.1 Communication with others 178 6.7.2 Struggling to cope and facing the future 180 6.8 Discussion 182 CHAPTER 7: THE PARENT-CHILD DYADS 186 7.1 Overview 186 7.2 The Murphys: Paula and Amy 190 7.2.1 Interview locations and characteristics 191 (i) Tracing the early days 191 (ii) Interactions with professionals 193 (iii) Critical incidents/life events 195 (iv) Issues of appearance 199 (v) Now and the future 200 7 7.3 The Thompsons: Sandra and Bobby 201 7.3.1 Interview locations and characteristics 202 (i) Tracing the early days 202 (ii) Interactions with professionals 203 (iii) Critical incidents/life