Investigating the use of digital legacies with people affected by Motor Neurone Disease

403 Pages·2017·4.88 MB·English

by  Oliver Clabburn

Investigating the use of digital legacies
with people affected by Motor Neurone
Disease (MND): An Interpretative
Phenomenological Analysis

Oliver Clabburn

January 2018

A thesis submitted in partial fulfilment of the requirements
for the degree of Doctor of Philosophy.

Edge Hill University
Declaration
This thesis is entirely my own work and has not been submitted, in full, or in
part, for the award of a higher degree at any other educational institution.
Sections of this thesis have been presented at conferences or disseminated
via media outlets, details are presented below:

Conferences
CLABBURN, O., 2015. Oral Presentation: To infinity and beyond: the use of a
legacy generation app for people affected by motor neurone disease (MND) in
the Cutting Edge 2015- Answers to the Great Question, of Life, the Universe
and Everything at Edge Hill University, 18th April.
CLABBURN, O., 2015. Oral Presentation: Digital legacies for people affected
by Motor Neurone Disease (MND): Digital Legacy Conference at UCL
Partners, 23rd May.
CLABBURN, O., 2015. Second Place Poster Presentation: Investigating the
use of digital legacies with people affected by Motor Neurone Disease: Sue
Ryder Centre for the Study of Supportive, Palliative and End of Life Care and
the Palliative Care Research Society PhD/MD Student Conference, at the
University of Nottingham, 8th December.
CLABBURN, O., 2016. Best Oral Presentation (Peer Reviewed): Online and
Offline Methods of Recruitment for Hard to Reach Populations: Post-Graduate
Research Student Symposium at Edge Hill University, 10th May.
CLABBURN, O., 2015. Best Oral Presentation (Peer Reviewed): Investigating
the views and experiences of using a digital legacy with people affected by
Motor Neurone Disease (MND): Post-Graduate Research Student Symposium
at Edge Hill University, 18th June.
CLABBURN, O., O’BRIEN, M., JACK, B. and KNIGHTING, K., 2016. Poster
presentation: Investigating the use of digital legacies with people affected by
MND: 27th International ALS/MND Symposium (Dublin) 6th-9th December.
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Media
CLABBURN, O., 2015. Interview. In: The Peter Allen Show. BBC5Live. 9
December 12.43hrs.
CLABBURN, O., 2016. Interview. In: The Graham Liver Breakfast Show. BBC
Lancashire. 1 June. 8.23hrs.
EDGE HILL UNIVERSITY, 2016. PhD student’s family battle with Motor
Neurone Disease inspires research to help others [online]. 6 June. Available
from: https://www.edgehill.ac.uk/news/2016/06/16536/ [Accessed 20
November 2017].
DAY, A., 2016. Olly’s very personal quest to help others hear their parents’
voice. Lancashire Evening Post [online]. 10 June. Available from:
https://www.lep.co.uk/news/olly-s-very-personal-quest-to-help-others-hear-
their-parents-voice-1-7958930 [Accessed 20 November 2017].
CLABBURN, O., 2016. Interview. In: The North-West Tonight. BBC1. 16 June.
19.26hrs.
NATURE INTERNATIONAL WEEKELY JOURNAL, 2017. ALS Video Legacy
[online video]. Available from: https://www.nature.com/nature/
videoarchive/als/index.html [Accessed 20 November 2017].
NATURE VIDEO, 2017. ALS Video Legacy [online video]. Available from:
https://www.youtube.com/watch?v=vkTAvFU0Ocw [Accessed 20 November
2017].

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Acknowledgements
I would like to express my gratitude to a number of people who have provided
me with unwavering support throughout my PhD to make this thesis possible.
I would firstly like to extend my thanks to the numerous charities and
organisations who have supported me throughout my PhD with specific thanks
to the MND Association and RecordMeNow. I also owe a great deal of thanks
to my supervisors; Prof. Mary O’Brien, Prof. Barbara Jack and Dr. Katherine
Knighting. I am indebted for your ongoing support and steadfast guidance
throughout my PhD. A special thanks is also directed towards my PhD
colleagues and friends; Amy, Emmie, Greg and Nick. Thank you for providing
me with valuable respite and keeping me motivated throughout my PhD. I
thank my Mum (Olivia) and her partner (Bob), for their constant optimism and
emotional support throughout my PhD. I also express thanks to my brothers
Ian, Duncan and Ben for keeping me motivated and providing regular check-
ups throughout the duration of my PhD. Finally, I would like to thank each of
the participants who dedicated their time and experiences by taking part in this
study.

I would like to dedicate this thesis to the memory of two very special people
who are sadly no longer with us. My Dad (Michael) who has clearly inspired
my research, and my Grandad (Oliver) who died during the second year of my
PhD. I hope that a small part of your ‘legacies’ will live on through this thesis.

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Contents

Acknowledgements .............................................................................................................. iv
Preface ................................................................................................................................... xi
Abstract .................................................................................................................................xiv
Chapter 1 - Introduction ........................................................................................................ 1
1.0 - Background to MND ................................................................................................ 1
1.1 - Rationale.................................................................................................................... 6
1.2 - Research aim, question and objectives ................................................................ 8
Research question ........................................................................................................ 8
Research objective 1 .................................................................................................... 8
Research objective 2 .................................................................................................... 8
Research objective 3 .................................................................................................... 8
Chapter 2 - Literature review ............................................................................................. 10
2.0 - Review design ........................................................................................................ 10
2.0.1 - Literature search method ................................................................................... 13
2.0.2 - Section summary ................................................................................................ 15
2.1 - Literature review one ................................................................................................. 15
2.1.0 - Background .......................................................................................................... 15
2.1.1 - Search method .................................................................................................... 20
2.1.2 - Inclusion/exclusion criteria ................................................................................ 20
2.1.3 - Search results ...................................................................................................... 21
2.2 - Therapeutic life review .......................................................................................... 22
2.2.1 - Psychological benefits of therapeutic life review ........................................ 24
2.3 - Dignity therapy ........................................................................................................ 27
2.3.1 - Psychological benefits of dignity therapy .................................................... 29
2.4 - Alternative approaches to stimulate life review ................................................. 32
2.4.1 - Psychological benefits of alternative approaches to stimulate life review
....................................................................................................................................... 33
2.5 - Summary ................................................................................................................. 39
Chapter 3 - Literature review two ...................................................................................... 40
3.0 - Background ............................................................................................................. 40
3.1 - Search method ....................................................................................................... 46
3.1.1 - Inclusion/exclusion criteria ................................................................................ 46
3.1.2 - Search results ...................................................................................................... 46
3.2 - Unintended connections ........................................................................................ 48
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3.3 - Intended connections ............................................................................................ 52
3.4 - Internalised connections ....................................................................................... 56
3.5 - Summary ................................................................................................................. 60
Chapter 4 – Methodology ................................................................................................... 61
4.1 - Theoretical approach ............................................................................................. 62
4.2 - Ontological and epistemological perspective ..................................................... 64
4.3 - Phenomenology ...................................................................................................... 68
4.4 - Idiographic approach ............................................................................................. 81
4.5 - Interpretative Phenomenological Analysis ......................................................... 82
4.6 - Summary ................................................................................................................. 88
Chapter 5 - Methods ........................................................................................................... 90
5.0 - Research aim and objectives ............................................................................... 90
5.1 - Ethics ....................................................................................................................... 91
5.1.1 - Ethical committee approvals ......................................................................... 91
5.2 - Participant ethical considerations ........................................................................ 92
5.2.1 - Informed consent ............................................................................................ 92
5.2.2 - Anonymity and confidentiality ....................................................................... 95
5.2.3 - Protecting participants from harm ................................................................ 96
5.2.4 - Protecting researchers from harm ................................................................ 97
5.3 - Participant recruitment .......................................................................................... 99
5.3.1 - Other recruitment methods .......................................................................... 107
5.4 - Participants............................................................................................................ 114
5.5 - Research Setting .................................................................................................. 117
5.6 - Data collection ...................................................................................................... 118
5.7 - Data management ................................................................................................ 122
5.8 - Data analysis ........................................................................................................ 122
5.9 - Validity and reliability ........................................................................................... 129
5.10 - Summary ............................................................................................................. 133
Chapter 6 - Findings: the experiences of plwMND creating a digital legacy........... 134
6.0 - Sample and data collection................................................................................. 134
Alice ............................................................................................................................. 136
Charlie ......................................................................................................................... 137
John ............................................................................................................................. 138
Tommy ........................................................................................................................ 138
6.0.1 - Analysis .............................................................................................................. 140
6.1 - Motivation for creating a digital legacy .............................................................. 141
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6.1.1 - Disease progression ..................................................................................... 141
6.1.2- Conveyance of identity and past experiences ........................................... 144
6.2 - Purpose and hoped for use of a digital legacy ................................................ 150
6.2.1 - Parenting and guiding .................................................................................. 150
6.2.2 - Alternative purposes of the digital legacy.................................................. 154
6.2.3 - Hoped for use of the digital legacy ............................................................. 156
6.3 - Challenges in creating a digital legacy ............................................................. 161
6.3.1 - Planning and preparation............................................................................. 162
6.3.2 - The recording process ................................................................................. 167
6.4- Intrinsic benefits for plwMND creating a digital legacy .................................... 172
6.4.1 - The digital legacy as a project .................................................................... 172
6.4.2 - Reflecting upon memories ........................................................................... 174
6.5 - Summary ............................................................................................................... 176
Chapter 7- Findings: the experiences of bereaved young people using a video
legacy .................................................................................................................................. 177
7.0 - Sample and data collection................................................................................. 177
Becky ........................................................................................................................... 179
Isabelle and Sophie .................................................................................................. 180
7.0.1- Analysis ............................................................................................................... 182
7.1 - Meeting and being reintroduced to the plwMND ............................................. 183
7.1.1 - Seeing the person physically able .............................................................. 183
7.1.2 - Hearing the sound of their voice ................................................................. 187
7.1.3 - The conveyance of implicit and explicit information ................................ 192
7.2 - Reinforcing and remembering existing memories ........................................... 195
7.2.1 - Reinforcing identity ....................................................................................... 195
7.2.2 - Readily accessible memories ..................................................................... 198
7.3 - The challenges of bereaved young people using a video legacy ............. 201
7.3.1 - Content of the video legacy ......................................................................... 201
7.3.2 - Timing and dependency............................................................................... 204
7.4 - Summary ............................................................................................................... 206
Chapter 8 - Findings: the perceptions of healthcare professionals, specialists and
experts regarding the use of digital legacies with people affected by MND ............ 207
8.0 - Sample and data collection................................................................................. 207
8.0.1 - Analysis .............................................................................................................. 210
8.1 - plwMND creating a digital legacy........................................................................... 212
8.1.1 - Benefits and value for plwMND creating a digital legacy............................ 212
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8.1.2 - To not be forgotten ....................................................................................... 213
8.1.3 - Providing a sense of purpose and relief .................................................... 215
8.2.1 - Challenges and barriers for plwMND creating a digital legacy .................. 217
8.2.2 - Psychological challenges and barriers to creating a digital legacy ....... 218
8.2.3 - Practical challenges and barriers to creating a digital legacy ................ 222
8.3 - Young people using a digital legacy ...................................................................... 224
8.3.1 - Benefits and value for young people using a digital legacy ....................... 225
8.3.2 - Promoting memory of the person and their voice .................................... 225
8.3.3 - Endorsing connection and continuing bonds ............................................ 230
8.3.4 - Accessibility and usability ............................................................................ 232
8.4.1 - Challenges and barriers for young people using a digital legacy .............. 234
8.4.2 - Providing and accessing the digital legacy ............................................... 234
8.4.3 - Content of the digital legacy ........................................................................ 237
8.5 - Summary ............................................................................................................... 239
Chapter 9 - Discussion ..................................................................................................... 240
9.0 - Overview of ‘The Model of Reciprocal Bonds Formation’ .............................. 240
9.1 - Autobiographical chapter (plwMND) ................................................................. 245
9.1.1 - Purpose and intention of the digital legacy ............................................... 245
9.1.2 - Benefits in plwMND creating a digital legacy............................................ 251
9.1.3 - Challenges and implications for plwMND creating the digital legacy ... 256
9.2 - Writing the penultimate and last chapter (bereaved young people) ............. 261
9.2.1 - Developing the last chapter and having an ongoing narrative ............... 262
9.2.3 - Challenges and implications for bereaved young people using the digital
legacy .......................................................................................................................... 267
9.2.4 - Benefits for bereaved young people using a digital legacy .................... 270
9.3 - Summary and original contributions to knowledge ......................................... 276
Chapter 10 - Reflection .................................................................................................... 278
10.1 - Rationale for creating a reflexive diary ........................................................... 278
10.2 - Reflexive discussion .......................................................................................... 280
Diary extract 1: an online forum response ............................................................. 281
Diary extract 2: MND Association branch meeting .............................................. 285
Diary extract 3: interview with Charlie .................................................................... 288
Diary extract 4: interview with Isabelle ................................................................... 292
10.3 - Summary ............................................................................................................. 296
Chapter 11 – Strengths, limitations and recommendations ........................................ 297
11.0 - Strengths and limitations .................................................................................. 297
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11.0.1 - Sensitivity to context................................................................................... 298
11.0.2 - Commitment and rigour ............................................................................. 300
11.0.3 - Transparency and coherence ................................................................... 303
11.0.4 - Impact and importance .............................................................................. 304
11.1 - Summary of strengths and limitations ............................................................. 305
11.2 - Recommendations for future policy, practice and research ........................ 306
11.2.1 - Recommendations for policy ..................................................................... 306
11.2.2 - Recommendations for practice ................................................................. 308
11.3.3 - Recommendations for future research .................................................... 310
11.3 - Final word ................................................................................................................ 312
Reference list ..................................................................................................................... 313
Appendices ......................................................................................................................... 347

List of tables
Table 1- An overview of the 'seven steps' to reviewing literature (Fink, 2014). . 12
Table 2- A summary of the newsletters where recruitment information was
published. ....................................................................................................... 110
Table 3- A summary of the NHS Trusts and PIC Sites involved in study
recruitment. ..................................................................................................... 112
Table 4- A summary of the participant inclusion criteria. ................................. 115
Table 5- A summary of participant and digital legacy characteristics .............. 139
Table 6- A summary of participant and video legacy characteristics ............... 181
Table 7- A summary of participant characteristics. .......................................... 209
Table 8- A summary of theme prevalence. ..................................................... 212
Table 9- A summary of theme prevalence. ..................................................... 225

List of figures
Figure 1- A summary of the four key areas of palliative care for plwMND (Oliver,
2002) ....................................................................................................................... 5
Figure 2- A summary of search results .................................................................. 22
Figure 3- A summary of search results .................................................................. 47
Figure 4- An overview of the theoretical and philosophical underpinnings for the
study ...................................................................................................................... 62
Figure 5- A visual representation of a ‘Mitsein-bridge’ through use of a digital legacy.
.............................................................................................................................. 73
Figure 6- Diagram of the hermeneutic circle on both individual and global level. ... 78
Figure 7- A summary of the online recruitment methods adopted throughout the
study. ................................................................................................................... 101
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Figure 8- A summary of other recruitment methods adopted throughout the study.
............................................................................................................................ 108
Figure 9- A visual representation of homogeneity between participant populations.
............................................................................................................................ 116
Figure 10- The participant journey and data collection protocol for the study. ...... 118
Figure 11- A summary of the data analysis process. ............................................ 124
Figure 12- Quality evaluation guide for IPA research (Smith, 2011). .................... 132
Figure 13- A summary of the superordinate and ordinate themes generated from the
interviews conducted with plwMND. ..................................................................... 140
Figure 14- A summary of the superordinate and ordinate themes generated from the
interviews with bereaved young people. .............................................................. 182
Figure 15- A summary of the superordinate and ordinate themes generated from the
interviews with healthcare professionals, specialists and experts. ....................... 211
Figure 16- Overview of ‘The Model of Reciprocal Bonds Formation’ .................... 244
Figure 17- A copy of the forum discussion ........................................................... 282
Figure 18- Motor neurone disease: assessment and management ...................... 306

List of appendices
Appendix 1- Summary review table (literature review one: legacy interventions)
........................................................................................................................ 348
Appendix 2- Summary review table (literature review two: continuing bonds) . 357
Appendix 3- FREC approval letter .................................................................. 361
Appendix 4- HRA approval letter ..................................................................... 362
Appendix 5- Example of a participant information sheet (plwMND)................. 363
Appendix 6- Participant information for 11-15 year olds .................................. 366
Appendix 7- Parent/guardian consent sheet for participants under 16 years old
........................................................................................................................ 368
Appendix 8- An example of participant consent sheet (plwMND) .................... 369
Appendix 9- University safe fieldwork protocol ................................................ 371
Appendix 10- Motor Neurone Disease- Legacy Research (Facebook page) .. 374
Appendix 11- Twitter profile ............................................................................ 375
Appendix 12-Examples of pictorial recruitment adverts .................................. 376
Appendix 13- Example of a forum post ........................................................... 378
Appendix 14- BBC North West Tonight interview ............................................ 379
Appendix 15- Newspaper article for Lancashire Evening Post
(http://bit.ly/1rlEVBo) ....................................................................................... 380
Appendix 16- An example of an NVivo report for frequency of codes ............. 381
Appendix 17- An example of participant quotes compiled into theme ............. 382
Appendix 18- An example of the information provided on Facebook and
responses ....................................................................................................... 383
Appendix 19- Consolidated criteria for reporting qualitative studies (COREQ):
32-item checklist (Tong, Sainsbury and Craig, 2007) ...................................... 384

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