An Exploration of Mothers' Experiences in Caring for Children
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An exploration of mothers’ experiences in caring for children with complex needs Honor M. Nicholl A thesis submitted in fulfilment of the degree of Doctor of Philosophy of The University of Dublin, Trinity College 2008 Declaration This thesis is submitted in total fulfilment of the requirements of the degree of Doctor of Philosophy. I declare that this thesis is entirely my own work, unless otherwise acknowledged, and has not been previously submitted as an exercise for a degree at Trinity College Dublin or any other university. I, the undersigned, grant permission to The University of Dublin Trinity College to lend or copy this thesis upon request. This permission covers single copies made for study purposes and is subject to normal conditions of acknowledgement. Signed _____________________ __________________ Honor M. Nicholl Date SUMMARY An exploration of mothers’ experiences in caring for children with complex needs Background The diagnosis of a chronic childhood illness or disability is a major crisis which can bring about irreversible change for the family. Unlike parents of children with acute illness where the focus is on cure, parents of children with chronic illness have a focus on care that may be prolonged and of unknown duration. Within the literature on care-giving for children with chronic illnesses it is reported that mothers must attend to a significant range of responsibilities and activities that places multiple and ongoing demands on them. The consequences of this have been categorised as stressors experienced at the time of diagnosis, during developmental transitions, those related to ongoing care needs and when the child experiences illness, exacerbations and hospitalisation. In children with chronic illnesses many specific stressors have been identified. However, little is known about the needs of children with rare, progressive and potentially life- limiting disorders and the impact of caring for these children at home. Knowledge of the mothers’ experiences of providing this care in Ireland is currently limited at a time when services are being developed in response to meeting the complex needs of these children. The aim of the study The aim was to explore mothers’ experiences of caring for their child with complex needs at home. The nature of these experiences, and specifically mothers’ care-giving, was investigated. The focus was to seek rich in-depth descriptive and interpretive information to provide a greater understanding of this particular phenomenon. Methodology This qualitative study utilised the philosophy of hermeneutic phenomenology based on the approaches of Heidegger and Gadamer. Seventeen mothers from The Republic of Ireland and Northern Ireland provided the data collected through multiple interviews and diary recordings. Forty-eight in-depth interviews were undertaken and eleven mothers each submitted three diaries. Approval to undertake the study was provided by Trinity College, Dublin and ethical and methodological issues were addressed throughout. i Findings The mothers’ experiences of caring for a child with complex needs are framed by dimensions that exist in an inside world at home; in the world outside the home and in a going–between world. The complexity of caring involves eight dimensions for mothers. These are care-giving that comprises normal mothering, technical care-giving, pre-emptive care-giving and individualised care-giving; paperwork and administration; constant instability; constant observation; a ‘no-choice’ situation; knowingness; unknowingness; and constant communication. Conclusion The mothers’ experiences of caring for children with complex needs have been explicated and these are bounded in three worlds. The eight dimensions provide a greater understanding of the experiences of caring for children with complex needs at home in Ireland. The findings have implications for health care professionals, and policy makers, who need to ensure that services for these children develop from the perspective of the service user. ii ACKNOWLEDGEMENTS I would like to thank sincerely the mothers who so willingly contributed to this study by sharing their experiences. I have been honoured to hear their stories and the realities of their lived world. Exploring these mothers’ experiences contributes to a greater understanding for all those who are involved in delivering care to children with complex needs. I am indebted to the organisations that helped to recruit mothers; to the staff from voluntary and statutory agencies that provided advice and to professional colleagues, experts and academic advisors who assisted at all stages of the work. To those who helped administratively, particularly Ailish and Anita, sincere thanks are recorded. I am grateful to Professor Cecily Begley for providing support and advice that has assisted me with the development and completion of this study. Sincere thanks go to my close friends who provided understanding and patience throughout. I would like to thank Chris especially, for his unwavering support, understanding and encouragement at all times. Finally, consistent support throughout has been provided by my family and thanks go to them. A special note of gratitude goes to my mum who would have been so proud had she lived to see the completion of this work. iii iv TABLE OF CONTENTS Summary i Acknowledgements iii Table of Contents v List of Tables xiii Format of this Thesis xiv Chapter 1 - Introduction and Context 1 1.1 Introduction 1 1.2 Background 1 1.3 Research purpose 2 1.4 Phenomenon of interest 3 1.5 Focus of enquiry 3 1.6 Rationale for the study 3 1.7 The research design 4 1.8 Complexity in terminology 5 1.9 The reason for complexity in terminology 6 1.10 Confirming the terminology used in this study 7 1.11 The children 7 1.12 Statistical complexity 8 1.13 International disability statistics 8 1.14 Disability statistics in Ireland and Northern Ireland 9 1.15 Children with complex care needs at home 9 1.16 Children with complex care needs at home in Ireland 10 1.17 Emerging need for home care - rationale 11 1.18 Increase in community-based care 12 1.19 The current service provision 13 1.20 Conclusion 13 Chapter 2 - The Literature Review 14 2.1 Introduction 14 2.2 The place of the literature review in this study 14 2.3 Completing the review- benefits of this approach 15 2.4 Sources of information 15 2.5 The literature - an overview 15 v 2.6 Disability studies 16 2.7 Psychological impact of disability 18 2.9 Chronic illness and its impact on carers 20 2.10 Care-giving work 21 2.11 Psychological impacts 22 2.12 Life-threatening disorders/technology dependence 25 2.13 Rare and potentially life-threatening disorders 28 2.14 Quality of life (Qol) studies 28 2.15 Unspecific medical diagnoses 30 2.16 Parental responses 30 2.17 Mediators of stress 32 2.18 The impact on parents of the care-giving activities 33 2.19 Irish Studies 33 2.20 Summary 35 2.21 Linking the literature to the aim of this study 35 Chapter 3 - The Research Framework 37 3.1 Introduction 37 3.2 Influences on the choice of research design 37 3.3 The place of phenomenology within qualitative research 38 3.4 The methodological approach 39 3.5 Phenomenology and nursing 40 3.6 The ‘I’ 41 3.7 The history of phenomenology 41 3.8 The foundation of phenomenology and work of Husserl 42 3.9 The developments by Heidegger 43 3.10 Ongoing developments – Gadamer 44 3.11 Fusion of horizons and prejudice 46 3.12 The hermeneutic circle and reflexivity 47 3.13 The application of hermeneutic phenomenology 48 3.14 Flexibility in this approach- The ‘I’ 48 3.15 Reflexivity in this approach 49 3.16 Types of reflexivity 50 3.17 The ‘I’ - an exemplar of existing presuppositions and prejudices 52 3.18 Final comments - The ‘I’ 53 3.19 Conclusion 53 vi Chapter 4 - Research Design and Data Collection 54 4.1 Introduction 54 4.2 The sample 54 4.3 Recruitment strategy 54 4.4 The mothers recruited 56 4.5 The responses 56 4.6 Subsequent processes 57 4.7 The respondents 57 4.8 The children 58 4.9 Challenges in recruitment 58 4.10 Challenges in sample size 59 4.11 Challenges and the changing nature of the enquiry 60 4.12 Methods of data collection 62 4.12.1 Data collection - interviews 62 4.12.2 Interviews: a discussion 62 4.12.3 Unstructured in-depth interviews 63 4.12.4 Interview approaches considered 64 4.12.5 Using multiple interviews 64 4.12.6 Planning the interviews 66 4.12.7 The interview setting 66 4.12.8 Interviewing - The researcher as tool 68 4.12.9 Developing the researcher – researched relationship 69 4.13 Data collection timeframe 70 4.14 Diaries as a data collection tool 70 4.14.1 Using diaries – practical issues 72 4.14.2 Issues in diary recording -The ‘I’ 73 4.15 Other sources of data 74 4.16 Summary 75 4.17 The ‘I’ in research design and data collection 75 Chapter 5 - Ethics and Quality 76 5.1 Introduction to ethics 76 5.1.1 Formal ethical approval 76 5.1.2 Informed consent 77 5.1.3 Formal written consent 78 5.1.4 Confidentiality 78 vii 5.1.5 Control of information 79 5.1.6 Trust 79 5.1.7 Autonomy 81 5.1.8 Non- maleficence and psychological distress 81 5.1.9 Child protection 82 5.1.10 Researcher safety 82 5.1.11 Comment on ethical issues - The ‘I’ 83 5.2 Introduction to quality 84 5.2.1 A holistic approach 86 5.2.2 A focus on human experience 86 5.2.3 Sustained contact in the natural environment 86 5.2.4 Persistent observation 87 5.2.5 High level of research involvement 88 5.2.6 Verification- descriptive and narrative data 89 5.2.7 Peer debriefing and review 91 5.2.8 The “phenomenological nod”