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Concerns and Needs of Chronically Ill Hospitalised Children and Carers in a Saudi Public Hospital

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Concerns and Needs of Chronically Ill Hospitalised Children and Carers in a Saudi Public Hospital Concerns and Needs of Chronically Ill Hospitalised Children and Carers in a Saudi Public Hospital Lamees Abdulsalam Yousef A thesis in fulfilment of the requirements for the degree of Doctor of Philosophy School of Public Health and Community Medicine University of New South Wales Sydney, Australia September 2018 Dedication To my husband Nawaf Sayedakram for his endless love and support To my children Deema, Rital and Abdulaziz for their understanding, love and patience To my parents Abdulsalam Yousef and Ahlam Dashash for their everyday prayers and unconditional love i Acknowledgements I would like to start by praising Allah, the almighty, for guiding me through the toughest times and helping me complete this PhD study. I thank him for giving me strength, health, love, family and the determination that kept me going. Achieving this dream of completing my PhD studies would not have been possible without the help and support of many individuals to whom I am forever grateful. I would like to express my heartfelt thanks to my primary supervisor Dr. Husna Razee. Her encouragement, advice, discussion and guidance has helped me tremendously in growing and maturing at conducting qualitative research. Her patience and support throughout reading and re-reading drafts of my thesis and providing constructive feedback helped in my academic writing and in elevating this thesis to better heights. Thank you to Dr. Joel Rhee, my co-supervisor for his discussion, support and intellectual guidance in both quantitative and qualitative research. I thank him for continuing to support me even after he left UNSW and for his invaluable contribution without which this work would not be possible. Thank you to Associate Professor of Internal Medicine Dr. Waleed AlBaker my local supervisor at Saudi Arabia for providing me with valuable logistical and administrative support during my data collection. I’m forever grateful to my participants in both the quantitative and qualitative phases. They shared their valuable time and their precious experiences and stories with me. My hope is that I have given a voice to my participants and have accurately reflected their experiences. My gratitude also goes to the lovely and cooperative staff at King Fahad Hospital of the University in general and to the staff of the paediatric ward specifically. Thank you to those who participated in my research and to others who helped me distribute my surveys to participants. Thank you for all your help during my data collection period. You have truly made my field work time delightful. I will forever treasure our moments together every day sharing chocolate, coffee, and laughs. I also would like to thank biostatistician Nithya Jayaseeli at King Fahad Hospital of the University for her ongoing support and advice during the quantitative analysis. She was truly my lifeline when I was facing some issues with my data. ii I would like to extend my sincere thanks and gratitude to my sponsor; the Saudi Arabian Cultural Mission for giving me this great opportunity to pursue my higher education and for their continued support and help. Pursuing a PhD in a foreign country so far away for my own culture, family and friends was very hard. However, I was very fortunate to have met the nicest group of friends who made my time here not only bearable but enjoyable. For that I am truly grateful. I would like to thank you all for the girl’s nights out, park barbecues, talks about school and for literately being there for me. A special thanks to my parents Abdulsalam Yousef and Ahlam Dashash. I owe both of you so much and there can never be enough words to express my gratitude. Thank you for your unconditional love, your support and your prayers. Thank you for being such good role models for me, for believing in me and for teaching me the importance of education. I am truly proud to be your daughter. I would like to thank all of my siblings for their love, support and kind words. I am forever grateful to my brother Dr. Abdullah Yousef who deserves a special thanks for standing by my side from day one and helping me throughout my candidature. Thank you for casually checking up on me and my progress from time to time. Your advice, administrative support and love was truly appreciated. I thank you profoundly for your help. A special thanks to my sister Dr. Haneen Yousef for being there for me and for my children. Thank you so much for everything you did and continue to do for us. Thank you for being there for me and my kids and taking care of my girls while I was away in Sydney for the final year. Your love and support was amazing and I couldn’t have done it without you. To my bundles of joy and the source of my happiness my children Deema, Rital and Abdulaziz, thank you for your patience, prayers and understanding. I know it has been difficult on you to have me far away in Sydney. You have endured a lot to help me achieve my dreams. Thank you for being so understanding and for making me proud at school each and every day. I hope that I have made you proud and that you can learn to always follow your dreams. Last but certainly not least, I am forever grateful to my wonderful husband Dr. Nawaf Sayedakram. I truly could not have asked for a better partner. Thank you for all your love and advice. Thank you for pushing me to pursue my dreams. Thank you for making me think that I can achieve whatever I work hard to do. Thank you for being there for me and iii for sacrificing so much for me to complete my studies especially the last year of my thesis when you all had to leave to Saudi Arabia and I had to stay behind. Thank you for encouraging me to stay and complete my thesis. Thank you for being a wonderful husband and a father. Thank you for being the wind beneath my wings! Thank you all! iv Table of Contents Dedication .......................................................................................................................... i Acknowledgements ........................................................................................................... ii Table of Contents .............................................................................................................. v List of Tables.................................................................................................................... xi List of Figures ................................................................................................................. xii Abstract .......................................................................................................................... xiv List of Abbreviations....................................................................................................... xv Chapter 1 ........................................................................................................................... 1 Introduction ....................................................................................................................... 1 1.1 Background ........................................................................................................ 2 1.2 The family-centred care model ........................................................................... 4 1.3 Significance of the study .................................................................................... 5 1.4 Purpose of the study ........................................................................................... 6 1.5 The research questions and objectives ............................................................... 6 1.6 Organisation of the thesis ................................................................................... 7 Chapter 2 ........................................................................................................................... 9 Literature Review .............................................................................................................. 9 2.1 Literature search strategy ................................................................................. 10 2.2 Global response to chronic diseases ................................................................. 10 2.3 Chronic diseases in children ............................................................................. 11 2.3.1 Chronic diseases in Western countries ...................................................... 13 2.3.2 Chronic diseases in Saudi Arabian context ............................................... 15 2.4 Caring for a chronically ill child ...................................................................... 16 2.5 Partnership between the parents and healthcare team ...................................... 19 2.6 Parental roles .................................................................................................... 22 v 2.6.1 Provider of nurture, support and comfort .................................................. 24 2.6.2 A teacher and a learner .............................................................................. 24 2.6.3 Provider of physical and technical care .................................................... 25 2.7 Parental needs during hospitalisation of child .................................................. 26 2.7.1 Need for recognising the parents’ expertise .............................................. 26 2.7.2 Need for partnership with the healthcare team ......................................... 27 2.7.3 Need for normalisation .............................................................................
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