Swallowing Changes in People with Parkinson's in Saudi Arabia

235 Pages·2017·1.95 MB·English

Swallowing Changes in People with Parkinson’s in Saudi Arabia:
Perceptions and Practices

Kholoud Alhussain

Submitted for the degree of Doctor of Philosophy
Institute of Health and Society, Faculty of Medical Sciences

October 2016
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Abstract

The aim of this research was to explore the experience of swallowing changes in people with
Parkinson’s (PwP) in Saudi Arabia and their impact on both PwP and their families.
The impact of eating and drinking changes in neurological conditions has not been thoroughly
studied and the influence of culture on how people deal and cope with swallowing changes
also has been neglected. There are very few studies on Parkinson’s carried out in Saudi
Arabia and none have looked at the impact of these changes on both the PwP and their
families.
This is a qualitative study, using semi-structured interviews with 39 participants PwP and
their carers and a focus group with three speech and language therapists. The interviews and
focus group were transcribed verbatim, translated into English and were analysed using
thematic analysis.
The main themes categories that emerged are ‘the whole meal is awkward’, ‘we all have
Parkinson’s’ and ‘I leave it all to Allah’. There was a close link between cultural context and
how eating and drinking changes manifested and impacted on individuals and families. The
role of the older person in Saudi culture during meals as well as gender roles within a Saudi
family strongly influenced how PwP felt about their restricted eating abilities. The influence
of Islamic beliefs was apparent in both the PwP and the caregivers’ interviews. It shaped how
they dealt with Parkinson’s, how they interpreted symptoms and change, their views on
rehabilitation and their willingness to discuss the impact of changes with the interviewer.
This study highlights how Saudi Arabian society has traditional mealtime customs for
families and for older people in particular. Eating and drinking changes due to Parkinson’s
challenge and restrict these customs. An understanding of these socio-cultural factors is
necessary to appreciate how the impact of eating and drinking changes in Saudi Arabia differs
from impacts reported for European and North American populations and the different
implications this holds for rehabilitation of PwP. Speech and language therapists as well as
other healthcare workers need to be aware of the cultural background of the person with
Parkinson’s when assessing their eating and drinking abilities. Considerations have to be
made when recommending treatment plans or eating modifications.

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This thesis is dedicated to Mariam Aljardan and Mohammed Alhussain,
my beloved parents

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Acknowledgements

I am very grateful to my academic supervisors Professor Nicholas Miller, Dr. Lindsay
Pennington and Dr. Katie Brittain for their support, patience and encouragement on this
journey. I appreciate your confidence in my abilities to complete this PhD and your valuable
time, advice and guidance, which made this experience not only rewarding but also enjoyable.

I would like to thank those who stood by me and without whom this thesis would never have
been completed. I am deeply grateful and thankful to Abdullah Almooh, my beloved husband,
my best friend and my soulmate. The support, patience and love you have given me has
allowed me to finish this thesis.

To my beloved parents for their endless love, support and pride in me, thank you.
To my sisters, Hailah, Fatmah, Badreah and Eman, and my brothers Ail and Nasser, thank
you for always being there for me. I love you so much. To my best friend and my sister in
Newcastle Noura, thank you for always being there for me.

Finally I wish to thank my children, my amazing boys Mohammed, Sa’ad and Ibrahim. You
were the light that helped me stay on this path and finish it. I love you so much.

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Table of Contents
Abstract ...................................................................................................................................... iii
Acknowledgements .................................................................................................................... v
Table of Contents ..................................................................................................................... vii
List of Tables and Figures ......................................................................................................... xi
Chapter 1. Introduction, Importance, and Structure ................................................................... 1
1.1 Introduction ....................................................................................................................... 1
1.2 Motivation and Importance ............................................................................................... 2
1.3 Structure of the Thesis ...................................................................................................... 4
Chapter 2. Literature Review...................................................................................................... 5
2.1 Parkinson's ........................................................................................................................ 5
2.1.1 An Overview .............................................................................................................. 5
2.1.2 Prevalence .................................................................................................................. 6
2.1.3 Symptoms and Diagnosis ........................................................................................... 7
2.1.4 Management ............................................................................................................. 11
2.2 Issues Associated with Parkinson's ................................................................................. 13
2.2.1 Dysphagia ................................................................................................................. 13
2.2.2 The multi-layered nature of Parkinson's .................................................................. 15
2.2.3 The psychosocial impact of dysphagia and Parkinson's .......................................... 17
2.3 The Cultural Context of Health Research ....................................................................... 21
2.4 Saudi Arabia ................................................................................................................... 22
2.4.1 The Saudi Arabian culture and health and illness .................................................... 29
2.4.2 An overview of the health system in Saudi Arabia .................................................. 30
2.5 Research Questions and Study Objectives ...................................................................... 31
2.5.1 Purpose of the Study ................................................................................................ 31
2.5.2 Research Questions .................................................................................................. 31
2.5.3 Research Objectives ................................................................................................. 31
2.6 Summary ......................................................................................................................... 32
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Chapter 3. Methodology and Methods ..................................................................................... 33
3.1 Philosophical Assumptions ............................................................................................. 33
3.2 Study Design ................................................................................................................... 37
3.3 Sampling ......................................................................................................................... 39
3.3.1 Recruitment .............................................................................................................. 41
3.3.2 Participants with Parkinson's .................................................................................... 45
3.3.3 Carers ....................................................................................................................... 46
3.4 Speech and Language Therapists Focus Group .............................................................. 47
3.5 The Interview Process ..................................................................................................... 48
3.5.1 Reflecting on the Interviews .................................................................................... 50
3.6 Data collection challenges .............................................................................................. 52
3.6.1 Issues with recruitment............................................................................................. 52
3.6.2 Issues with interviewing people with Parkinson’s ................................................... 53
3.7 Data Preparation and Analysis ........................................................................................ 54
3.7.1 Transcribing and translation ..................................................................................... 55
3.7.2 Reading..................................................................................................................... 55
3.7.3 Coding and building the themes list ......................................................................... 56
3.7.4 Evaluating the quality of qualitative research .......................................................... 56
3.8 Ethical Review and Approval ......................................................................................... 58
3.9 Conclusion ...................................................................................................................... 59
Chapter 4. Findings .................................................................................................................. 61
4.1 Findings from first stage of fieldwork ............................................................................ 62
4.1.1 Eating and drinking changes Vs swallowing changes ............................................. 62
4.1.2 Carers interviews (family and social lives) .............................................................. 67
4.1.3 Findings from SLTs focus group ............................................................................. 71
4.1.4 Reflecting on the first stage of fieldwork ................................................................. 76
4.2 The Study Themes .......................................................................................................... 78
4.3 Theme One: The Whole Meal is Awkward .................................................................... 81
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4.3.1 Physiological eating and drinking changes and their effects ................................... 82
4.3.2 Social impact of eating and drinking changes .......................................................... 87
4.3.3 The emotional impact of eating and drinking changes ............................................ 96
4.4 Theme two: We all have Parkinson’s ........................................................................... 103
4.4.1 Carers' experiences ................................................................................................. 103
4.4.2 The family's experience .......................................................................................... 112
4.4.3 Relatives (distant family) ....................................................................................... 113
4.5 Theme three: I leave it all to Allah (Religious, Cultural and Health Service Policies) 118
4.5.1 Ibtila ....................................................................................................................... 118
4.5.2 Transportation ........................................................................................................ 120
4.5.3 Gender segregation ................................................................................................. 121
4.5.4 Understanding Parkinson’s and the changes that accompany it ............................ 122
4.5.5 Health Service Organisations and Availability ...................................................... 124
4.6 Summary ....................................................................................................................... 128
Chapter 5. Discussion and Conclusion ................................................................................... 129
5.1 Introduction ................................................................................................................... 129
5.2 Reflections during the analysis ..................................................................................... 130
5.3 The imprint of Saudi Arabian culture on perceived eating and drinking changes........ 130
5.3.1 The experiences of people with Parkinson's .......................................................... 131
5.3.2. Experiences of people with Parkinson’s: patients’ failure to appreciate the
seriousness of their condition and the key role played by Saudi culture ........................ 136
5.4. Understanding the main findings in relation to theoretical constructs ........................ 138
5.5. The experiences of carers and the influence of gender ................................................ 147
5.6. The role of religion ...................................................................................................... 153
5.7 Implications for clinical practice .................................................................................. 156
5.8 Limitations and implications for future research .......................................................... 161
5.9 Discussion Summary .................................................................................................... 167
5.10 Final reflection ............................................................................................................ 167
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5.11 Conclusion .................................................................................................................. 169
References and bibliography .................................................................................................. 171
Glossary .................................................................................................................................. 188
Appendices ............................................................................................................................. 191
Appendix A: Focus group topic guide ............................................................................... 191
Appendix B: People with Parkinson’s Interview Schedule (Initial interviews) ................ 193
Appendix C: People with Parkinson’s Interview Schedule (Final interviews ................... 197
Appendix D: Carer Interview Schedule (Initial interviews) .............................................. 200
Appendix E: Carers Interview Schedule (Final interviews) .............................................. 204
Appendix F: Data Form ..................................................................................................... 206
Appendix G: Ethic approval Newcastle University ........................................................... 208
Appendix H: Information sheet for People with Parkinson’s ............................................ 209
Appendix I: Information sheet for Carers .......................................................................... 215
Appendix J: Consent form for People with Parkinson’s .................................................... 219
Appendix K: Consent form for Carers ............................................................................... 222

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