The Lived Experiences of Hospital for Parents of Children Commenced on Invasive Long-term

275 Pages·2016·4.08 MB·English

The Lived Experiences of Hospital
for Parents of Children Commenced
on Invasive Long-term Ventilation

Melanie Ann McFeeters

May 2016

A Thesis Submitted in Partial Fulfilment of the Requirements
for the Award of Professional Doctorate in Health Science

De Montfort University
Abstract
Recent years have seen a significant increase in the number of ventilator-dependent
children being discharged from the hospital. There is a wealth of literature describing
the issues surrounding the complex discharge process required for these children
however there has been limited exploration of the experiences of parents during their
child’s admission to hospital. Interpretive phenomenology based on Heideggerian
research philosophy was used to explore the lived experiences of hospital for parents
of children commenced on invasive long-term ventilation (I-LTV). Purposive sampling
was utilised to select parents of children who had been cared for at one NHS hospital
trust. Eight in-depth, unstructured qualitative interviews involving sixteen parents
(eight couples) were conducted over a six month period during 2014 to gather data
about the parent’s recollections of the time spent with their child in hospital. Most
children were cared for on both the paediatric intensive care (PIC) and high
dependency units (HDU) with the majority having been discharged from hospital at the
time of the interviews. All interviews were transcribed verbatim, and analysed using a
modified van Manen (1990) approach. Thematic analysis provided an insight in to the
lived world of the parents caring for their technology-dependent child, with two over-
arching concepts of uncertainty and transitions characterising the parents’ journeys.
The findings revealed multiple transitions in a world of complexity and uncertainty
with four main themes emerging from the data; 1) Going in to the Unknown, 2) This
wasn’t what we wanted, 3) Safer at Home, and 4) Clawing every little bit back. Parents
were required to develop coping strategies to deal with the transitions and
uncertainties experienced and establish new roles and identities as they became
experts in caring for their technology-dependent child. As a result of the findings a new
framework combining the concepts of uncertainty and transitions was derived
identifying areas for consideration including: health-illness, psycho-social, situational
and developmental transitions together with existential, biographical, environmental,
relational and temporal uncertainties. Strategies for facilitating coping and adaptation
towards healthier outcomes were identified and a strong argument emerged for the
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development of more effective management of transitions and uncertainty delivered
within an environment more conducive to family-centred care.

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Dedication
I dedicate this thesis to the parents and children who through their participation have
enabled me to complete this study. But more importantly who by sharing their
experiences have allowed me to gain a better understanding of the complex world in
which we expect them to accept and survive without question. In allowing me the
privilege of hearing about their experiences and then translating them in to this
academic piece of work has provided me with a unique opportunity not only to listen
to what they have said but essentially act upon their words and begin to change the
way in which we care for the future children and their families who will also benefit
from this work.

I would also like to dedicate this thesis to the parents of TS as it was as a result of their
experiences in hospital that took me down the road of exploring the experiences of
other parents whose children had been commenced on invasive long-term ventilation
and also finally I wish to dedicate this work to the memory of JS who sadly died in
2015.

The findings presented in this thesis will be reported in an executive summary which
will be sent to all the participants along with a letter of thanks for taking the time to
take part in the study and allowing me to use their descriptions of their time spent in
hospital with their child. It is also anticipated that the findings will be presented at
national and international respiratory meetings, and may be published in peer
reviewed nursing and medical journals.
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Acknowledgements
I would like to thank the following people who have provided me with their support
and encouragement over the last six years whilst I have endeavoured to complete this
professional doctorate.
My thanks go to Professor Jayne Brown, Professor Judith Tanner and Professor Sue
Dyson, all of whom have been my supervisors at various stages over the last few years
and have encouraged me and provided their support and wisdom. Special thanks are
offered to Dr Rosie Garratt who has not only been a supervisor to me but has offered
unstinting encouragement and inspirational words especially at times when the end of
the journey seemed such a long way off.
I would also like to thank my professional and work colleagues who have also
supported me through this journey. Special thanks go to Helena Dunbar who has been
a close colleague and friend for many years and has always listened and been there to
offer support and guidance particularly at times of need.
Finally I would like to thank all my family including my parents, sister and brother and
their families, all of whom I would like to apologise to as I have not seen as much of
them as I would have liked to over the last few years. Incredible thanks go to my
husband Andy who has been an absolute ‘rock’ and whose patience with me never
seems to wear thin. I couldn’t have achieved this without him and his constant supply
of food and drink to sustain me whilst sat at my desk. My sons Jack and Harris who
always manage to provide words of encouragement and make me feel loved and very
lucky to be their mother. And last and by no means least my beautiful daughter Maeya
who has been the most patient and understanding daughter I could ever have hoped
for, who will now be given some proper attention and who I will be able to spend
some very valuable time with. I am so very proud of her.

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Contents
Abstract .................................................................................................................... 1
Dedication ................................................................................................................ 3
Acknowledgements .................................................................................................. 4
Contents ................................................................................................................... 5
Structure of Thesis .................................................................................................... 8
Abbreviations used in the study .............................................................................. 10
Definitions of Long-term Ventilation used in the study ............................................ 10
1 Introduction to the Study ................................................................................. 11
1.1 Background to the study ............................................................................................. 12
1.2 Evolution of Research Interest .................................................................................... 14
1.3 Aims and Objectives of the Study ............................................................................... 15
2 Review of the Literature .................................................................................. 16
2.1 Introduction ................................................................................................................ 16
2.2 Literature Search for Children commenced on I-LTV .................................................. 17
2.2.1 Prevalence of LTV ................................................................................................................. 18
2.2.2 Reasons for LTV .................................................................................................................... 19
2.2.3 Decision-Making in I-LTV ...................................................................................................... 21
2.2.4 Outcomes ............................................................................................................................. 22
2.2.5 Bed occupancy and Length of Stay ....................................................................................... 24
2.2.6 Discharge Planning - From Hospital to Home ....................................................................... 25
2.2.7 Safety of I-LTV....................................................................................................................... 27
2.2.8 Parental Experiences of Caring for a Child on I-LTV in Hospital ........................................... 28
3 Research Methodology .................................................................................... 31
3.1 Introduction ................................................................................................................ 31
3.2 Fields of Philosophy .................................................................................................... 32
3.3 Phenomenology .......................................................................................................... 35
3.3.1 Philosophical Origins of Phenomenology ............................................................................. 35
3.3.2 Husserlian Phenomenology .................................................................................................. 36
3.3.2.1 Intentionality ............................................................................................................... 37
3.3.2.2 Bracketing (Epoché) & Reduction ................................................................................ 37
3.3.3 Heideggerian Phenomenology (Hermeneutics) ................................................................... 39
3.3.4 Descriptive or Interpretive Phenomenology? ...................................................................... 41
3.3.4.1 Max van Manen ........................................................................................................... 43
3.3.4.2 Levels of Reduction ...................................................................................................... 45
3.3.5 Limitations of Interpretive Phenomenology ........................................................................ 47
3.4 Research Method ........................................................................................................ 49
3.4.1 Research and Clinical Governance ....................................................................................... 49
3.4.2 Study Approval ..................................................................................................................... 50
3.4.3 Participant Sample ............................................................................................................... 50
3.4.4 Participant Recruitment ....................................................................................................... 51
3.4.5 Confidentiality & Anonymity ................................................................................................ 53
3.4.6 Ethical Considerations .......................................................................................................... 54
3.4.7 Data Collection ..................................................................................................................... 55
3.4.8 Pilot Interview ...................................................................................................................... 58
3.4.9 Main Data Collection ............................................................................................................ 59
3.4.10 Joint Interviews ................................................................................................................ 59
3.4.11 Data Analysis .................................................................................................................... 61
3.4.11.1 Transcription ................................................................................................................ 63
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3.4.11.2 Thematic Analysis ........................................................................................................ 64
3.4.12 Validity, Trustworthiness and Rigour ............................................................................... 67
3.4.13 Summary .......................................................................................................................... 70
4 Study Findings ................................................................................................. 72
4.1 Main Themes............................................................................................................... 72
4.1.1 Main Theme 1: ‘Going in to the Unknown’ .......................................................................... 74
4.1.1.1 Unchartered Territory ................................................................................................. 75
4.1.1.2 Mixed messages .......................................................................................................... 87
4.1.2 Main Theme 2: ‘This wasn’t what we wanted’ ..................................................................... 98
4.1.2.1 Uncertain Futures ........................................................................................................ 98
4.1.2.2 Information and Signposting ..................................................................................... 104
4.1.3 Main Theme 3: ‘Safer at Home’.......................................................................................... 107
4.1.3.1 Vigilance .................................................................................................................... 108
4.1.3.2 Involuntary Separation .............................................................................................. 114
4.1.4 Main Theme 4: ‘Clawing every little bit back’ .................................................................... 119
4.1.4.1 Uncertain Parenting ................................................................................................... 119
4.1.4.2 Extraordinary parenting............................................................................................. 127
4.2 Conclusions ............................................................................................................... 136
5 Discussion Chapter ......................................................................................... 140
5.1 Introduction .............................................................................................................. 140
5.2 Study Limitations ...................................................................................................... 141
5.3 Theoretical Links to Uncertainty and Transitions ..................................................... 143
5.3.1 Concept of Uncertainty ...................................................................................................... 143
5.3.2 Uncertainty related to Health ............................................................................................ 145
5.3.3 Concept of Transitions........................................................................................................ 150
5.3.4 Transitions in Health........................................................................................................... 151
5.4 Parental Experiences of Uncertainty ........................................................................ 157
5.4.1 Antecedents of Parental Uncertainty ................................................................................. 157
5.4.2 Appraisal of Uncertainty ..................................................................................................... 165
5.4.3 Consequences of Uncertainty ............................................................................................ 166
5.4.4 Coping with Uncertainty and Adaption .............................................................................. 167
5.4.5 Management of Uncertainty .............................................................................................. 171
5.4.6 Outcomes of Uncertainty ................................................................................................... 172
5.5 Parental Experiences of Transitions .......................................................................... 173
5.5.1 Nature of Transitions .......................................................................................................... 173
5.5.2 Health-Illness Transition ..................................................................................................... 174
5.5.3 Psycho-social Transitions .................................................................................................... 177
5.5.4 Situational Transitions ........................................................................................................ 180
5.5.5 Developmental transitions ................................................................................................. 183
5.5.6 Facilitators and Inhibitors ................................................................................................... 184
5.5.7 Patterns of response – Process and Outcomes .................................................................. 188
5.6 Links between Transitions and Uncertainty ............................................................. 192
5.7 Implications for Clinical Practice ............................................................................... 196
5.8 Recommendations .................................................................................................... 201
5.9 Suggestions for further research .............................................................................. 205
5.10 Conclusion ................................................................................................................. 207
6 References ..................................................................................................... 213
7 Appendices .................................................................................................... 242
7.1 Appendix 1: NRES Approval ...................................................................................... 242
7.2 Appendix 2: NRES Approval Confirmation ................................................................ 247
7.3 Appendix 3: NHS Trust R & D Approval ..................................................................... 249
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7.4 Appendix 4: DMU Ethics Approval ............................................................................ 251
7.5 Appendix 5: DMU Sponsor Confirmation ................................................................. 252
7.6 Appendix 6: Research Working Agreement (DMU/NHS Trust) ................................ 253
7.7 Appendix 7: Research Invitation Letter..................................................................... 256
7.8 Appendix 8: Participant Information Sheet .............................................................. 257
7.9 Appendix 9: Participant Consent Form ..................................................................... 260
7.10 Appendix 10: Interview Schedule ............................................................................. 261
7.11 Appendix 11: Example of Thematic Map Analysis of Interview 001 ......................... 262
7.12 Appendix 12: Example of Thematic Summary: Theme 1 ‘Going into the Unknown’ 263
7.13 Appendix 13: Summary of Thematic Analysis ........................................................... 264
8 Bibliography .................................................................................................. 265

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Structure of Thesis
The following summary provides an overview of the structure of the thesis and
highlights the content of each chapter.
Chapter 1: Provides an introduction to the thesis and the aims and objectives of the
research study to explore the lived experiences of hospital for parents of children
commenced on invasive long-term ventilation (I-LTV).
Chapter 2: Presents the literature review and considers the existing published work
concerning the overall context of children commenced on I-LTV with a focus on
publications regarding the experiences of parents caring for their ventilator-dependent
child in hospital. In keeping with the chosen research methodology an initial limited
literature review was undertaken based on the decision that a contemporaneous
approach to review further literature would be commenced as themes emerged from
the findings.
Chapter 3: Presents the chosen research methodology based on the philosophical
approach of phenomenology. The chapter presents an overview of descriptive and
interpretive phenomenology and provides an account of the research methods used
and the data analysis approach adopted for this study. Based on Heidegger’s
interpretive phenomenology the study used a modified hermeneutic approach
influenced by van Manen to explore the ‘lived experience’ of the participants.
Chapter 4: Presents the findings of the study and is separated into four sections one
for each of the four main themes emerging from the data. In-vivo quotes used to
capture the main thematic findings were use as headings for each section. The overall
findings of the parents’ experiences reveal what appear to be two overarching
concepts of ‘uncertainty’ and ‘transitions’.
Chapter 5: Offers a discussion on the findings of the study and considers the two over-
arching concepts of ‘uncertainty’ and ‘transitions’. The chapter reviews the main
theoretical frameworks supporting the two concepts and identifies areas of
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congruence with Mishel’s (1988) Uncertainty in Illness Theory and Meleis’s et al.
(2000) Transitions Theory. Additional findings relating to the concepts were not
recognised by either Mishel’s or Meleis et al.’s theories, consequently a new model
based on the parents’ lived experiences in this study was developed. This new model
provides a unique contribution to knowledge and offers a basis for healthcare
professionals to consider and reflect upon the parents’ lived experiences. Additionally
it aims to facilitate recognition of the parents’ needs during this period of uncertainty
and transition. Finally the chapter presents the conclusions and recommendations of
the study including the implications for clinical practice, education and research.

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