The Lived Experiences and Embodiment of Asthma and Sports and Exercise in the South Asian Population: an Interpretative Phenomenological Analysis
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The lived experiences and embodiment of asthma and sports and exercise in the South Asian population: An interpretative phenomenological analysis A thesis submitted in partial fulfilment for the award of Doctor of Philosophy Zainab Khalid Yusuf September 2019 Collaborating establishment: University of Lincoln Acknowledgements I would like to thank my supervisory team, Dr. Diane Wensley, Professor Jacquelyn Allen-Collinson and Dr. Helen Owton for their support. Without them, this thesis could not have been possible. I would like to thank Diane for her words of encouragement and her continuous reassurance that I would one day finish this thesis. I am forever grateful. I would like to thank Jacqui for her words of wisdom and her assistance, especially during the last months of this thesis. Your support has been invaluable. I would like to thank my family and friends for their endless love and support. My friends for every ‘academic’ conversation we had. My parents, for helping me to get here and patiently waiting for me to finally say that I have finished my PhD. My grandmother for her constant belief that I would one day achieve my doctorate. My sister, who has supported me through the tirades, the cries and the anxiety ridden days. I could not have done this without you. Finally, my husband. Without you, I could never have gotten to this point. You have supported me through it all. Thank you for always being there and for reminding me that I could do this. It was worth the wait. I would like to thank De Montfort University for providing me with the opportunity to carry out this research. Lastly, I would like to thank my respondents for their time and their stories. Without you, there would not have been a thesis to write. 1 Communications The publications and presentations from this study are listed below: Journal Publications YUSUF, Z.K. (2019). “Eyes streaming, asthma would be going off”: Using poetic inquiry in asthma and exercise and sport research in the UK-resident South Asian population: An alternative representation. Qualitative Methods in Psychology, 28, pp. 42-50. Conference Presentations Yusuf, Z. “An insight into the lives of South Asian people with asthma and their sporting experiences” at the De Montfort University Research Student Poster Competition. De Montfort University, Leicester, 5th April 2017. Yusuf, Z. “Working out asthma: An investigation of the experiences and embodiment of asthma and sports and exercise in the adult South Asian population” at the Midlands Health Psychology Annual Conference, Kettering, 24th May 2018. Yusuf, Z. “Working with asthma: Being South Asian, living with asthma, and participating in exercise and sports: An exploration of the lived experiences” at the Open University Sport Research Group. Open University, Milton Keynes, 12th June 2018. 2 Abstract Individuals of South Asian origin with asthma in the UK are more likely to experience excess morbidity and increased hospitalisation rates compared to their White British counterparts. South Asian groups also have lower levels of active participation in sport and/or exercise and are less likely to maintain an exercise regime. There is limited research investigating the experiences of asthma and sport and/or exercise specific to the UK-resident South Asian population and therefore this thesis was designed to explore this. This study used a qualitative, interpretive, phenomenologically-inspired approach and employed a single method design. In-depth semi-structured interviews were conducted with 14 participants (12 female, 2 male) of Indian, Pakistani, Bangladeshi and Sri Lankan ethnic origin, who had experience of asthma and sport and/or exercise. Their accounts were analysed using interpretative phenomenological analysis (IPA), informed by a symbolic interactionist (SI) perspective. Central to the findings in this study was the presentation of the asthma self in an everyday and sporting context. Goffman’s (1959; 1963) conceptual analysis of self-presentation and stigma, together with Leder’s (1990) phenomenologically-inspired insights on the ‘absent’ body and ‘dys-appearing’ body, with Zeiler’s (2010) phenomenologically-inspired notion of the ‘eu-static’ body, were employed to understand these phenomena. Seven superordinate themes were formed from the participants’ data: negotiating the asthmatic identity; how they manage their medication; the impact of culture and how it affects treatment behaviour; integrating sport and/or exercise into their everyday lives; reasons for non-engagement in sport and/or exercise; stigma; and lastly the participants’ relationships with healthcare professionals. Recommendations for healthcare practice and policy include considering cultural stigma and ascertaining exactly which UK-resident South Asian communities require a better awareness of asthma. Patient sensitivity should be considered, as well as the stigmatising effects of asthma on sporting and/or exercising experiences. Sporting bodies need to acknowledge the role of South Asian cultural and gender differences when aiming to improve sport and/or exercise participation. Furthermore, healthcare professionals need to consider whether their patients perceive themselves to be ‘asthmatic’ and understand how this might affect medication taking behaviour, as well as being culturally responsive and discussing the use of non-pharmacological treatments in a non- judgemental manner. Finally, it is imperative that the patient and HCP aim to achieve a therapeutic relationship where they share similar notions about treatment objectives. 3 Table of Contents Acknowledgements................................................................................................................................... 1 Communications ....................................................................................................................................... 2 Abstract ..................................................................................................................................................... 3 Table of Contents ...................................................................................................................................... 4 Lists of Tables and Figures ........................................................................................................................ 8 Glossary of Terms ................................................................................................................................... 10 Chapter One: Introduction ...................................................................................................................... 16 1.1 Introduction ........................................................................................................ 16 1.2 Asthma in the UK South Asian population .......................................................... 17 1.3 Asthma, sport and exercise in the South Asian population ................................ 19 1.4 Thesis statement ................................................................................................. 20 1.5 Research aims ..................................................................................................... 21 1.6 The respiratory system ....................................................................................... 22 1.7 Asthma ................................................................................................................ 24 1.8 Asthma management and control ...................................................................... 27 1.9 Thesis terminology .............................................................................................. 29 1.10 Structure of this thesis ........................................................................................ 35 Chapter Two: South Asian people’s experiences of asthma and sports and exercise: Review of the literature ................................................................................................................................................. 37 2.1 Introduction ........................................................................................................ 37 2.2 Literature search strategy ................................................................................... 37 2.3 Asthma and sport and exercise in the South Asian population .......................... 63 2.4 Limitations of previous research ......................................................................... 72 Chapter Three: Conceptual frameworks ................................................................................................. 75 4 3.1 Introduction ........................................................................................................ 75 3.2 Symbolic interactionism...................................................................................... 75 3.3 Self-presentation ................................................................................................ 78 3.4 Stigma ................................................................................................................. 83 3.5 Phenomenologically-inspired theories ............................................................... 86 3.6 Summary of conceptual frameworks .................................................................. 95 Chapter Four: Research methodology .................................................................................................... 96 4.1 Introduction .......................................................................................................