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Social Relationships and Community End of Life Care in Hong Kong by Wing-Sun Chan

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Social Relationships and Community End of Life Care in Hong Kong by Wing-Sun Chan Social Relationships and Community End of Life Care in Hong Kong by Wing-sun Chan A Thesis submitted to the Faculty of Graduate Studies of The University of Manitoba in partial fulfilment of the requirements of the degree of Doctor of Philosophy Department of Sociology and Criminology University of Manitoba Winnipeg Copyright © 2020 by Wing-sun Chan Abstract In Hong Kong, like other modern societies, death and dying are identified as a crucial public health issue. Given developments in the Hong Kong healthcare system, some of the work of caring for dying people and their families has shifted to cross- disciplinary collaboration in community settings. This trend corresponds with a growing policy and practice emphasis on social relationships in non-medical forms of community-based care for dying people and their families. In the present study, abductive grounded theory methodology was used to examine the complex dynamics and mechanisms involved in social relationships between dying people (and their families) and volunteers and professionals in community-based social service agencies. The goal was to contribute to knowledge about how social relationships influence the experiences of dying people and their families, and to explore and engage theoretically with the concept of social capital as a dynamic, relational process. Relationships between social service agency staff and medical professionals were also explored. Through contacts with two community-based end-of-life (EOL) service agencies in Hong Kong, qualitative data were collected using 14 in-depth interviews with practitioners and 2 service users. The findings were used to develop a clear and parsimonious three-stage model of relational social capital development. In this model, relationships between service agency workers and families can be seen as addressing a i key precondition of social capital through establishing trust, facilitating the accessibility of social capital through cultivating mutuality, and mobilizing social capital through fostering collaboration; all of these processes contribute to mitigating community detachment. Lastly, this study elucidates implications for policy and practice related to both health promotion and community engagement in the care of dying people and their families in Hong Kong communities. ii Acknowledgements Firstly, I would like to express my sincere gratitude to my advisor Dr. Laura Funk for the continuous support of my Ph.D study and related research, for her patience, motivation, and immense knowledge. Her guidance helped me throughout the research and writing of this thesis. Besides my advisor, I would like to thank the rest of my advisory committee: Dr. Daniel Albas, Dr. Christopher J. Fries, and Dr. Genevieve Thompson, for their insightful comments and encouragement, but also for the challenging questions they posed, which prompted me to broaden my research from various perspectives. My sincere thanks also goes to Profs. Lori Wilkinson, Tracey Peter, and Sonia Bookman, who provided me support and encouragement during difficult stages of my Ph.D study. Last but not the least, I would like to thank my family: Luresa, Kale, and Hazel for supporting me spiritually throughout writing this thesis and in my life in general. iii List of Abbreviations End of Life Care (EOL) List of Tables Table 3.1 Summary of participants interviewed in PARACLETE and the Life Rainbow community EOL care projects List of Diagrams Diagram 7.1 Synthesizing Lin’s (2001) conceptualization of social capital with findings from this study Diagram 7.2 Lin’s (2001) model on social capital Diagram 7.3 The role of institutional support in compassionate community development iv Table of Contents Abstract .......................................................................................................................... i Acknowledgements .................................................................................................... iii List of Abbreviations .................................................................................................. iv List of Tables ............................................................................................................... iv List of Diagrams .......................................................................................................... iv Chapter One: Introduction ......................................................................................... 1 I. Background and Rationale ......................................................................... 1 II. Research Question and Significance ........................................................ 10 III. Outline of the Dissertation ....................................................................... 11 Chapter Two: Literature Review ............................................................................. 13 Introduction .......................................................................................................... 13 I. Social Capital and Public Health ............................................................. 14 II. Conceptualizing Social Capital: A Contested Sociological Concept ...... 18 Closed networks and socio-cultural aspects of social capital: perspectives from Bourdieu and Coleman ........................................................................ 19 From the effectiveness of closed structures to the importance of open structures of social capital: Putnam and Burt’s perspectives ....................... 25 Developing a theoretical model of social capital: Lin’s perspective on social capital ........................................................................................................... 30 III. Social Capital in the Hong Kong Context................................................ 35 Chapter Three: Research Methodology................................................................... 40 Introduction .......................................................................................................... 40 I. Setting ...................................................................................................... 42 II. Participant Recruitment, Sampling and Data Collection ......................... 45 III. GTM – Iterative Process and Analysis .................................................... 53 IV. Rigour ...................................................................................................... 59 V. GTM and Philosophical Assumptions ..................................................... 62 Chapter Four: From Community Detachment to Establishing Trust .................. 65 Introduction .......................................................................................................... 65 I. Structural and Positional Variations in Conditions of Social Capital: Community Attachment-Detachment .................................................................. 66 A paucity of institutional support ................................................................ 68 A socio-cultural constraint: Death illiteracy and taboo in communities ...... 74 Relational barriers and weak ties in high-density property markets ............ 78 II. Establishing Trust with Dying People and Their Families ...................... 83 Boosting credibility and familiarity ............................................................. 84 Responding actively to immediate, everyday needs .................................... 87 v Purifying the support relationship ................................................................ 93 Outcomes of establishing trust between practitioners, dying persons and their families ................................................................................................ 97 III. Establishing Trust while Respecting Boundaries: Collaborative Interactions with Medical Professionals in Community EOL Care..................... 98 Chapter Five: Cultivating Mutuality in Community End of Life Care .............. 104 Introduction ........................................................................................................ 104 I. The Process of Cultivating Mutuality .................................................... 105 Finding social commonalities (and hiding differences) ............................. 105 Immersion in routines: Participating in the daily routines of the client and family ......................................................................................................... 110 Supporting actualization – the wishes of dying persons and their families .................................................................................................................... 114 Engaging with clients’ emotions ................................................................ 118 II. The Outcomes of Mutuality ................................................................... 124 Caring about the feelings of the practitioner .............................................. 125 A sense of emotional security .................................................................... 127 Remaining estranged from the mutuality ................................................... 129 III. Cultivating Mutuality in Relationships with Medical Practitioners ...... 131 Chapter Six: Fostering Collaborative Community EOL Care ............................ 138 Introduction ........................................................................................................ 138 I. Fostering Collaboration for Community EOL Care in Families ........... 141
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