Conversations acrosos the divide


CONVERSATIONS ACROSS THE DIVIDE: 

JOURNEY OF AN EMERGING HEALTH CARE PROVIDER 

 

by 

 

David Chiu 

 

B.Sc., Dalhousie University, 2006 

 

A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF 

THE REQUIREMENTS FOR THE DEGREE OF 

 

MASTER OF ARTS 

 

in 

 

THE FACULTY OF GRADUATE STUDIES 

 

(Counselling Psychology) 

 

THE UNIVERSITY OF BRITISH COLUMBIA 

 

(Vancouver) 

 

 

 

 

May 2011 

 

© David Chiu, 2011  



   

ii 

 

ABSTRACT 

This is an account of my personal journey of struggles, reflections and realizations as a 

care provider for individuals who live with cancer. Using the autoethnography method, I asked 

the very personally relevant question, “How do I understand my role as an emerging health care 

provider (HCP) to immigrant and young adults with cancer?” In other words, where do I fit in? 

How can I be the most effective caregiver possible? This telling of my journey incorporates my 

own experiences as well as the experiences of those who live and work with cancer. The journey 

begins almost a decade ago with an unexpected phone call that sends me to the bedside of a 

family member with cancer, and proceeds to my more recent experiences as a family caregiver, 

volunteer and counselling student and researcher. Drawing on multiple data sources, I explore 

the concept of health care provider, the desire to protect others and wear masks, and my own 

feelings of regret and guilt. Although this thesis presents my own realizations and insights, I 

hope that readers of these stories find resonance or dissonance with their own experiences, 

allowing them to make more sense of their own roles and circumstances.  



   

iii 

 

PREFACE 

The research described in this thesis was approved by the Behavioural Research Ethics 

Board at the University of British Columbia, Application ID H09-01073. 

  



   

iv 

 

TABLE OF CONTENTS 

Abstract ..................................................................................................................................... ii 

Preface ...................................................................................................................................... iii 

Table of Contents ...................................................................................................................... iv 

List of Images .......................................................................................................................... vii 

Acknowledgements ................................................................................................................. viii 

Dedication ................................................................................................................................. ix 

Chapter 1: Introduction ...............................................................................................................1 

1.1 Journey Beginnings ............................................................................................1 

1.2 Thesis Overview .................................................................................................4 

1.3 Research Question ..............................................................................................8 

1.4 Deconstructing Culture and the Self ...................................................................9 

Chapter 2: Methodology ............................................................................................................ 18 

2.1 Orienting Worldview ........................................................................................ 18 

2.2 Auto/ethno/graphic Inquiry ............................................................................... 19 

2.2.1 Rationale for adopting a qualitative ethnographic approach. ....................... 22 

2.2.2 Rationale for autoethnography. ................................................................... 24 

2.2.3 Situating myself. ......................................................................................... 25 

2.3 Collecting Data................................................................................................. 27 

2.3.1 Roles. ......................................................................................................... 27 

2.3.2 Methods and sources of data collection. ...................................................... 29 

2.4 Data Analysis ................................................................................................... 32 

2.4.1 Questions for reflexive analysis. ................................................................. 34 

Chapter 3: Stories ...................................................................................................................... 36 

3.1 Directions Emerging ......................................................................................... 36 

3.1.1 Arriving. ..................................................................................................... 36 

3.1.2 Strangers meeting. ...................................................................................... 37 

3.1.3 Adrift. ......................................................................................................... 38 

3.1.4 Connections. ............................................................................................... 38 

3.1.5 Where do I belong?..................................................................................... 39 



   

v 

 

3.1.6 Bearing it. ................................................................................................... 40 

3.1.7 Deep sleep. ................................................................................................. 40 

3.1.8 Misunderstandings. ..................................................................................... 41 

3.1.9 Bear bear. ................................................................................................... 42 

3.1.10 Auld lang syne. ......................................................................................... 43 

3.1.11 Evolving questions.................................................................................... 44 

3.1.12 Hope renewed and yet hope lost. ............................................................... 48 

3.1.13 Turning inward. ........................................................................................ 53 

3.2 Roles, Masks and this Divide Between Us ........................................................ 57 

3.2.1 Handling others with care. .......................................................................... 60 

3.2.2 My critical voice. ........................................................................................ 64 

3.2.3 Drifting apart. ............................................................................................. 65 

3.2.4 Struggling to find the balance. .................................................................... 70 

3.2.5 Our cultural context and the divide between us. .......................................... 77 

3.2.6 Language divides. ....................................................................................... 80 

3.2.7 Perceptions that divide. ............................................................................... 84 

3.2.8 Finding clarity amidst confusion. ................................................................ 88 

3.2.9 Practice dying. ............................................................................................ 90 

3.2.10 Summary. ................................................................................................. 91 

3.3 Deconstructing the Health Care Provider .......................................................... 92 

3.3.1 Who are health care providers? ................................................................... 93 

3.3.2 Burdens on care providers........................................................................... 98 

3.3.3 Volunteers as care providers. .................................................................... 100 

3.3.4 A willingness to respond. .......................................................................... 107 

3.3.5 The many faces of care providing. ............................................................ 111 

3.3.6 Summary. ................................................................................................. 114 

3.4 Conversations with Nímāmā ........................................................................... 115 

3.4.1 Juxtaposition of our two realities. ............................................................. 115 

3.4.2 Failing you. .............................................................................................. 117 

3.4.3 Protecting each other. ............................................................................... 121 



   

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3.4.4 Trying something different. ...................................................................... 125 

3.4.5 Protecting ourselves. ................................................................................. 127 

3.4.6 Someone who is simply present. ............................................................... 128 

3.4.7 Courage and strength. ............................................................................... 135 

3.4.8 Your gift of pain. ...................................................................................... 137 

Chapter 4: Conclusion ............................................................................................................. 141 

4.1 Implications for My Research Directions ........................................................ 142 

4.2 Implications for My Practice .......................................................................... 145 

4.3 Implications for Social Policy ......................................................................... 148 

4.4 Finally ............................................................................................................ 150 

References .............................................................................................................................. 151 

Appendices ............................................................................................................................. 167 

Appendix A. Initial Research Proposal ..................................................................... 167 

Appendix B. Literature Review ................................................................................ 170 

Appendix C. Conceptualizing “Culture” and the Self ............................................... 191 

Appendix D. Culture-Gram ...................................................................................... 196 

Appendix E. Journal Entry: Privilege and Responsibility ......................................... 197 

Appendix F. Genogram ............................................................................................ 202 

Appendix G. My Life Values ................................................................................... 203 

Appendix H. Timeline of Major Life Experiences Related to Cancer and Dying ...... 204 

Appendix I. Data Log .............................................................................................. 206 

Appendix J. Interview Questions for Patients ........................................................... 214 

Appendix K. Interview Questions for Health Care Providers.................................... 215 

Appendix L. Recruitment Brochure ......................................................................... 216 

Appendix M. Recruitment Flyer............................................................................... 218 

Appendix N. Initial Contact Letter ........................................................................... 219 

Appendix O. Consent Form for Patients ................................................................... 220 

Appendix P. Consent Form for Family Members, Friends and Caregivers ................ 223 

Appendix Q. Counselling Resources ........................................................................ 225 

Appendix R. Journal Entry: Waiting ........................................................................ 227 
 



   

vii 

 

LIST OF IMAGES 

Image 1. Personal photo from when I was eight......................................................................... 37 

Image 2. Personal photo of a bulletin board at the cancer agency. .............................................. 51 

Image 3. Excerpt from diary of a young woman with cancer. .................................................... 63 

Image 4. Excerpt from diary of a young woman with cancer. .................................................... 64 

Image 5. Excerpt from diary of a young woman with cancer. .................................................... 67 

Image 6. Excerpt from diary of a young woman with cancer. .................................................... 71 

Image 7. Your cancer care team. ............................................................................................... 95 

Image 8. Excerpt from diary of a young woman with cancer. .................................................. 111 

Image 9. Personal photo of public art entitled Echoes at Kitsilano Beach in Vancouver, BC. ... 113 

Image 10. Excerpts from diary of a young woman with cancer. ............................................... 116 

Image 11. Excerpt from diary of a young woman with cancer. ................................................ 121 

Image 12. From Volunteer Handbook: A Guide for Volunteers. ............................................... 129 

 

  

file:///C:/Users/David/Documents/Homework/Thesis/2011-04-20%20Thesis10_1.docx%23_Toc291088304


   

viii 

 

ACKNOWLEDGEMENTS 

Writing this thesis has been a reflective, rewarding and at times disconcerting experience. 

I would not have been able to do so without the unwavering support and encouragement of my 

supervisor, Dr. Marla Buchanan. Marla, your championing my growth and development as a 

counsellor long before I was ever your student has pushed my own expectations beyond anything 

I could have imagined for myself and for that, I will always be grateful. 

I am also thankful for the intuitional requirements that brought my path to cross with my 

co-supervisor at the British Columbia Cancer Agency, Dr. Amanda Ward. Amanda, I value our 

shared commitment to advancing cancer care and familiarity with the scientific method. Your 

questions often reminded me to look outside of the disciplinary and theoretical silos that I 

occupy.  

To Dr. Anusha Kassan, your penetrating questions made me think more deeply in both 

my research and clinical journey. I have been occupied many an evening in considering your 

comments.  

To the many individuals whose lived experiences have informed this inquiry and helped 

me gain a better understanding of my place as a health care provider, I am deeply indebted. I feel 

privileged by your willingness to share your stories. Their impact will continue to be expressed 

in my work and career long after this document finds itself covered in dust on some library shelf. 

To my parents, 妈，爸，you know. If I had to say anything now and in this form, it 

would already be too late. 

  



   

ix 

 

DEDICATION 

 

 

 

 

 

 

For 二姑姑, 

who lives on in my work, my aspirations 

and all that is to come. 



   

1 

CHAPTER 1: INTRODUCTION 

1.1 Journey Beginnings 

This research and personal journey began long before there was ever any consideration to 

complete a thesis or conduct research or even pursue a career in counselling psychology. My 

journey began with a single phone call. I remember the day clearly. It was December 2004.  

I hastily speed through the corridors of the Tupper Medical Building. Moments ago, I was 

locked into a classroom filled with other over-stressed, over-caffeinated students, feverishly 

writing away, fixated on the precious minutes and seconds ticking away on my final exam in 

Virology. Tick tock, tick tock. I reach out my arms towards the door handle to brace for the impact 

of walking full speed out an exit that I have done so many times before today but this time, it is 

different. This was my last exam of the term. I walked with an extra bounce in my step from the 

exhilaration that I was free, free of assignments and due dates, late nights and early mornings. I 

was free of any and all obligations to the world. ♪♪Yeah I’m free, free fallin’. 

It is a brisk, wintery December day in Halifax. There is snow on the ground. Maybe we‟ll 

have a white Christmas after all this year, I think. Hopefully, not too much snow though. I don‟t 

want to be shovelling the entire holidays. Then again, why does it even matter? I don‟t have 

anywhere that I need to go for the next two and a half weeks. Bring on the snow. 

As I rush towards my bus stop to meet the ride that will carry me to home sweet home, to 

warmth and relaxation, I notice my shadow cast onto the ground by the street lights overhead. It‟s 

dark already, I remark. I‟m embittered. It‟s hard to believe that I spent that much time in that 

dungeon of a classroom with that crazy exam. I blink, shaking off the negative thought. Oh well. 

That‟s long past me now. Never have to think about it again.  

Brain dump? 

Enter. 

Are you sure? 

Most definitely. 



   

2 

But it‟s dark already. Where has the daylight gone? I lament. It‟s not even that late, not 

even supper time yet. Oh supper! I‟m excited. Some delicious leftovers waiting for me in the 

fridge. Just reheat and feast. This time will be different though. No rushing to finish supper just to 

turn my attention to the very next exam. I am free, absolutely free! I feel a shot of adrenaline 

course through my body. I take in a deep breath to slow the moment down, to completely cherish 

this feeling of liberation. The cold air flows into my nostrils and into my lungs. It‟s refreshing. 

 

I step into my home. The house is quiet, empty. I‟m reminded that Mom has gone back to 

China for the holidays to help Dad. I have the house to myself. My mind swirls with ideas about all 

the fun I can have with this time off. Laze around and do completely unproductive things like 

playing some favourite videogames from childhood; plan a holiday gathering with friends next 

week; attend a Christmas dinner or two; do some running (which I‟ve put off over the last few 

weeks on account of school craziness). It‟s been a particularly exhausting term. I‟ve worked so 

hard to get to this moment, which makes it all the sweeter. This is going to be a great holiday.  

With supper alongside the TV out of the way, I plop myself down in front of the computer. 

It‟s quiet, peaceful. I sit with the silence as the computer hums to life.  

The sudden ringing of the phone breaks my moment of reverie. It‟s Dad. His voice is 

sombre. He tells me that 二姑姑 is in the hospital with cancer. Could I go to Washington, D.C. to 

accompany her?  

What? I‟m outraged and speechless. Why me? I protest in silence. My words are more 

subtle, trying to hide my anger. How could you ask me this? I don‟t even know her that well. 

There has to be somebody else who is closer to her and more appropriate. 

No. He rationally explains that all the extended family members are busy and it would not 

be easy for them to take time off. 

I scream in a voiceless silence. And yet you think that I‟m not, that I can take time off just 

like that! There are so many things that I‟m looking forward to these next few weeks here. And 

now to give it all up! How could you ask me this? I don‟t say any of these things out loud, though I 

know my tone probably reflects my bitterness. Part of me wants him to know it.  



   

3 

He senses my reluctance, but instead of addressing it openly, he avoids it as he always 

does and starts talking about the practical issues. She needs support during this time. It‟ll just be 

for these few weeks. You can be back before school starts again. 

Calls of familial responsibility and filial piety now swirl in my mind where moments ago 

there were plans of holiday folly. I begin to feel guilty, the sort that comes about through outside 

forces or is imposed by someone else‟s arguments and reasoning. I feel resentful. It‟s as though 

I‟m being forced to choose amongst one alternative. I bite my tongue and try to turn my attention 

to some of the practical issues as well. What am I going to be doing? I don‟t know her all that well. 

How can I possibly be of any help? Where am I going? When do they need me to go? 

He answers each question in turn. Staying with her in the hospital and attending to her 

needs. It doesn‟t matter that you don‟t know her that well. She will appreciate your company 

regardless. Cousin Charlie can pick you up from the airport and take you there. It would be great 

if you could go tomorrow. 

Tomorrow! I nearly choke. So I won‟t have any time to enjoy myself. My spirit is deflated 

at this point. Any will to resist has been overpowered by my sense of duty, my cultural value 

system. In this moment though, these values feel strangely foreign. 

Completely deflated, dejected, disappointed, the conversation ends. It is quiet again, 

except for the steady hum of the computer fan. I start up the browser and logon to the airline 

website to buy tickets.  

Departure date? 

Tomorrow. 

Are you sure? 

I have no choice. 



   

4 

1.2 Thesis Overview 

And so began my journey in providing care to individuals with cancer. My life changed 

as a result of my experiences that Christmas of 2004 with 二姑姑.
1
 I spent two weeks there 

between the hospital and my Cousin Charlie‟s apartment. Over that time, I became aware of a 

number of things that have changed my life. These realizations include the biomedical culture‟s 

sometimes tragic disregard of psychological and social dimensions of a patient‟s life despite 

providing access to the best that modern medicine has to offer; the inseparable connection 

between the mind and the body; the false pretences that supported my motivation to pursue a 

career in medicine. In the years subsequent to this watershed experience, I have developed a 

lasting interest in the area of psychosocial oncology. This personal interest has spawned the 

current research inquiry.  

The inquiry itself has not unfolded in a neatly linear way however. There was not a single 

question and methodology that was sequentially executed from beginning to end. My first 

research proposal was entitled, “Understanding the psychosocial experiences of cancer patients 

of Chinese ethnicity in the British Columbian cancer care system.”
2
 Since then, the inquiry has 

incorporated a focus on cultural intersections, namely of immigrant young adults with cancer.
3
 

Given the central role of personal culture in shaping one‟s experiences and worldviews, culture 

also emerged as an important analytic framework.  

                                                

1
 二姑姑 is pronounced Nímāmā in the Shanghai dialect of Chinese. It is a colloquial title used by children 

to address the second oldest aunt in a family. Nímāmā is how I have always referred to my Aunt 邱秀瑾 growing up. 

2
 This proposal was submitted nearly four years ago for a scholarship competition. It is included as 

Appendix A: Initial Research Proposal to show the changes in my inquiry over time. 

3
 For a more extensive description of my understanding of the term “culture”, refer to Chapter 1.4. 



   

5 

All throughout this inquiry, my focus was outward. I endeavoured to understand the 

experience of the other, whether that be the cancer patient of Chinese ethnicity or the immigrant 

young adult. As I spent time collecting data, a number of very personal questions emerged that I 

found myself preoccupied with. Where do I fit in? How can I be the most effective care provider? 

That is, “How do I understand my role as an emerging health care provider (HCP) for 

immigrants and young adults with cancer?” This very self-oriented interest became the main 

question that guided my inquiry. 

At this point, I think it is important to briefly clarify what is actually being studied and 

therefore the intended implications of this research. Firstly, a few constructs are worth clarifying. 

In defining cancer as the experience, I do not mean to suggest that what is being researched 

pertains only to people with cancer. Perhaps more accurately, I am referring to a medical 

condition that profoundly challenges someone‟s very existence, a subjectively life-threatening 

illness. Similarly, by immigrants and young adults, I allude to populations that are traditionally 

underserved by and marginalized within society (Arnett, 2000; Bleyer & Barr, 2006).
4
 There 

exist systemic challenges and gaps for immigrants and young adults in accessing care that may 

not necessarily be experienced by most others (Cancer Care Ontario, 2006). 

With the scope defined as such, my intention is not to draw from my experience some 

conclusion about some broader population. Indeed, I think that it is imprudent that some research, 

whether quantitative or qualitative in nature, strive to make brazen claims in the general form of 

“cancer patients of X diagnosis and Y ethnicity experience more challenges with Z”. Not only 

would such aims go beyond the intentions of this research, but it would also perpetuate a 

tradition of over-simplifying and categorizing the complexities of our human experience. This 

                                                

4
 For a more extensive review of the relevant literature, refer to Appendix B. 



   

6 

research is necessarily focused on the individual, whether it be my personal experiences or the 

narratives of the patients, family members and care providers with whom I have interacted. 

Moreover, I place myself squarely in this thesis to acknowledge the deeply personal (and 

therefore subjective) nature of this inquiry and the considerations that have directed its ebb and 

flow. Although my very research question may suggest a certain generalizability of my 

reflections to all immigrants and young adults with cancer, I will underscore that my experiences 

are unique and personal.  

As such, the aim of my research inquiry is not to quantify or establish causality; nor does 

this thesis hope to uncover and report on a reductionistic universal truth about what being an 

immigrant or young adult with cancer entails. There will be no list of prescriptive tips or 

recommendations at the end of this thesis for the solution-seeking reader. Instead, my research 

inquiry originated out of my own very practical concern of figuring out my role as a care 

provider within a system that centers on the individual immigrant or young adult with cancer, 

extending across people, places and time. My personal aim is to understand how I can effectively 

support this complex, multicultural system. In turn, this document will try to provide a richly 

detailed and evocative narrative of my experience in discovering my role as an emerging HCP. 

Through this account, I hope that you, the reader – whether beginning your journey in health care 

provision or having served in this role for many years – feel compelled to travel along in this 

journey and find resonance or dissonance with your own experiences, allowing you to make 

more sense of your own role and circumstances.  

These aspirations are in some ways substantial departures from more traditional academic 

pursuits that are set in positivistic paradigms, couched in the language of objectivity and 

neutrality, establishing hypotheses to be disproved and using categorical statements. As such, 



   

7 

this thesis is written in a different format, not structured according to familiar headings like 

introduction, literature review, methods, results, discussion and conclusion. Instead, this thesis 

consists primarily of four major sections: 1) an introductory section that situates myself in this 

research inquiry and defines my understanding of the term culture, 2) a methods section that 

describes the methodological traditions and process by which I have conducted this inquiry, 3) a 

narrative account of my realizations about my role as an emerging HCP, and 4) a summative 

section that discusses my conclusions and implications for my own practice and journey in 

cancer care provision. 

The most substantive portion of this thesis is Chapter 3, entitled “Stories”. It includes 

four self-reflective dialogues through which I have come to significant realizations about my role 

as an emerging HCP. Each section weaves together conversations with patients, care providers 

and colleagues; readings; and personal reflections (not necessarily connected by temporal 

proximity or chronology). Each section is also meant to be self-contained, allowing you to 

proceed through sections separately and in whatever order, while still being able to grasp the 

conclusions drawn. At the same time, I hope that in reading this entire thesis, you may gain a 

greater appreciation of my experiences and the cultural context which gave rise to them.  

The summative section synthesizes my realizations into some ideas about my role as an 

emerging HCP to immigrant and young adults with cancer. In addition, I will discuss the 

possible relevance and implications of my personal experiences on the wider cultural context of 

counselling psychology and cancer care provision. 

The notable absence of a formal literature review section is intentional. As is consistent 

with eminent scholarship using this method of self-oriented inquiry (Ellis, 2004), existing 

knowledge helps to relate the personal (private) experience to the experience of others or wider 



   

8 

society (public). As such, the relevant literature is referred to throughout the thesis and serves to 

situate my experiences a posteriori rather than justify a research design or direction of inquiry a 

priori.
5
  

Overall, this thesis is written in the style of a narrated documentary. My own journey as 

an emerging HCP will serve as the backbone of the thesis. In order to provide readers with a 

more real experience, I recount some of the relevant and at times poignant encounters, 

conversations and self-reflections that I collected while engaged in the research or as part of my 

day-to-day experience. Oftentimes, I make sense of my experiences through the writing process 

itself. Therefore you may be able to witness my thought and decision-making process as it 

unfolds. In the tradition of reflexive qualitative research, this level of transparency is used to 

reveal my own values, beliefs and biases that lead to my conclusions.  

1.3 Research Question 

My hope for this thesis is to share with you, the reader, my journey in coming to 

understand my role as a HCP. That is, “How do I come to understand my role as an emerging 

HCP for immigrants and young adults with cancer?” In sharing this journey with you, I hope that 

you may find resonance or dissonance with your own experiences, allowing you to come to a 

greater understanding about your own role and circumstances.  

                                                

5
 A more extensive review of the literature in the area of immigrant, young adult and cancer cultures is 

included as Appendix B. 



   

9 

1.4 Deconstructing Culture and the Self 

This research is at its core an inquiry about people‟s experiences at the intersection of 

cultures (Cole, 2009). As such, I will describe in this section my definition of the term culture 

and explain where I see the self as being located within this definition. With this understanding, I 

will situate myself culturally as well as within this research.  

The term culture is casually and pluralistically referred to by scholars and laypeople alike. 

Exchanges between two individuals or groups from different parts of the world are referred to as 

cross-cultural exchanges. Neighbourhoods or cities can differ in the degree to which they are 

multicultural. Within popular and academic circles alike, multiculturalism is a desirable social 

phenomenon that encourages people to consider life from a different perspective and develop 

empathy for fellow human beings (Fowers & Richardson, 1996). People can be of high or low 

culture. They can straddle two cultures, go back to or come from their cultures, or even have no 

culture. Multiculturalism is, to many, “alive and well”. Our everyday existence is filled with 

culture and yet it remains a term that is poorly understood.  

Even within cultural-anthropology and -psychology scholarship, there are different 

conceptualizations of the term culture (Geertz, 1973; Mead, 1971). One prominent definition of 

culture is as “the system of shared beliefs, values, customs, behaviors, and artifacts that the 

members of a society use to cope with their world and with one another, and which is transmitted 

from generation to generation through learning” (Bates & Plog, 1990, p. 7). This definition 

emphasizes the element of culture as shared meaning or implicit rules that govern behaviour. 

Other definitions seem to focus on culture‟s role in differentiating us from them (Hofstede, 2001). 

Adding to the confusion are contemporary scholars‟ debates about the similarities and 

differences between culture and related constructs such as race and ethnicity (American 



   

10 

Psychological Association, 2002; Helms & Talleyrand, 1997; Phinney, 1996). The plurality of 

definitions as well as some authors‟ disregard for explicitly defining culture or discussing culture 

in ways that are inconsistent with their stated definition can cause significant confusions.  

Given the centrality of culture within this research inquiry, I believe that it is essential for 

me to make sense of my own conception of culture. This task entails clarifying where I stand on 

two ongoing discussions within the scholarship of culture (Chang, 2008). One discussion 

revolves around the question, “Is culture physical and tangible?” A second and perhaps more 

fascinating discussion involves whether culture is located inside the person or “out there”. The 

second discussion relates to, though is not entirely synonymous with, the question “Is culture 

shared or personal?” 

Admittedly, like my ebbing and flowing research inquiry, my understanding of culture 

has evolved over time.
6
 In deconstructing culture for this thesis, I became aware of its central 

role in all facets of my experience. A number of self-reflection questions that I used in my data 

analysis
7
 prompted me to recognize how simple processes – from decisions about the research, 

perceptions in the field and reactions to conversations – are shaped by my cultural location. I am 

not just a tabula rasa or blank slate on which sensory experiences are etched, unaltered. 

It quickly became apparent that the debates and analyses about culture are not merely the 

concerns of theoreticians in the ivory towers of academia. They have significant real world 

implications also. Take for example the statement, “I come from a culture where…” which I 

overheard while at a recent multicultural psychology conference. On the one hand, for an 

individual of African heritage who perceives culture to be an identity that one is born into, he 

                                                

6
 Appendix C is an excerpt that describes my understanding of culture two years ago.  

7
 Refer to Chapter 2.4 Data Analysis for a more extensive description. 



   

11 

may enact life in a way that is consistent with cultural stereotypes of stupid, criminal and 

subordinate (Steele, Spencer & Aronson, 2002). On the other hand, for another person who 

perceives culture to be a group membership in which one chooses to participate in, then she may 

feel more freedom to oppose negative cultural stereotypes.  

In trying to formulate a definition, I find myself thinking about what culture is not. To me, 

culture is not a physical object, a group of people or a geographical space. Consequently, I 

believe that culture can neither be physically pointed nor defined by drawing some boundaries 

around a set of people or a place. These assertions seem to be intuitively true from the way 

people colloquially uses the word. It seems somewhat simplistic to refer to a carving or tree as 

culture itself. It seems more accurate to say that culture includes the artistic techniques used to 

make the carving or stories about the tree. Similarly, culture seems to be more than just a group 

of people who share traits or backgrounds. The people themselves are not the culture the way the 

attendees at a conference or inhabitants of a remote village are not culture. Thus, culture is 

neither a tangible object nor a group of people that one can point to, but rather the shared 

collection of knowledge, value and belief systems, practices and traditions that are applied to 

those objects or by a group of people. 

Following on this reasoning, the geographical space in which people occupy is not 

culture. Nevertheless, the association between geopolitical regions and culture is ubiquitous. For 

example, consider the ongoing use and abuse of the rather reductionistic binary of Western and 

Eastern cultures in both popular and scholarly discourse (Chua, 2011; Cohen, 2009). Most 

audiences would (perhaps incorrectly) assume that a speaker is referring to the practices or 

beliefs held by people who inhabit that region of the world. Yet, the very use of geographical 

descriptors (e.g., Western, Asian) seems to suggest something entirely physical. If by Asian, we 



   

12 

actually mean a collection of practices such as eating in ways consistent with feng shui principles 

or values such as Confucian ideals of filial piety, why do we not merely state it as such? In not 

doing so (i.e. to use cultural contractions such as Asian or Western), I believe that we reduce 

very complex constructs into simple ones, supporting over-generalizations and cultural 

stereotypes. 

The definition of culture that is emerging at this point seems to be consistent with the 

mainstream multiculturalism orthodoxy. What remains is perhaps the more interesting 

consideration of where the self is located within or in relation to culture. In other words, “Is 

culture inside a person or out there?” Moreover, “Is culture personal or shared?”  

In order to grasp these questions, I found myself reflecting on my observations of how 

certain people tend to fulfill their cultural stereotypes while others shed or ignore them. What 

appears to be at the heart of these different behaviours is the notion that culture is something one 

can have membership, in the way I might have memberships to an exercise gym or political 

organization. I choose to participate in a gym or belong to a political organization. As such, I 

tacitly endorse the opinions or philosophies of the organization, such as in valuing socialist 

policies or ecological sustainability.  

I find this idea of membership in culture incredibly appealing. It reflects the agency that 

every individual has in creating their personal cultural identity. As such, individuals may express 

membership in a culture but not participate actively in it or may display their cultural affiliation 

in different ways. Consider my cultural identity. Although I consider myself to be of Chinese 

culture, I did not actively participate in Lunar New Year and do not regularly consume Chinese 

media. Instead, I experience my identity in my feeling a greater urge to connect with patients 

who are of Chinese ethnicity or greater sorrow in relating to the struggles of a adolescent 



   

13 

caregiver of Chinese ethnicity. I imagine that if I was situated in a different cultural location, my 

reactions to these encounters would have been very different.  

The notion of having membership in culture also recognizes the power that individuals 

possess in foreclosing their affiliation in a culture (Berry, Phinney, Sam, & Vedder, 2006), or 

having membership in multiple cultures (Cole, 2009). As such, one‟s cultural identity is best 

viewed as being fluid or temporal rather than born into and permanent. I find this dynamic image 

quite appealing as it reflects of my own experiences as an active agent in constantly negotiating 

and defining my multiple cultural identities. As an immigrant, born in China, grown up in 

Eastern Canada and now living in Vancouver, I have participated in and withdrawn membership 

from a number of cultures.
8
 At times, I have had to reconcile the conflicting messages that I 

receive from cultures to which I have membership. In these confusing moments, I find my 

relationship to these cultures change. I distance myself from one culture while affiliating more 

closely with another. This often happens with my membership in the graduate student culture. 

When I walk into a seminar, I affiliate with that culture, ready to learn, take notes and think 

critically about the material. When I am engaged in my clinical practice, I distance myself from 

that culture. I behave differently, dress differently and engage in different conversations. This 

illustrates how my membership in the multiple cultures that forms my cultural identity fluctuates 

from moment to moment.  

Therefore, in response to the question of whether culture is within a person or out there, I 

believe the most accurate answer is both. My relationship with any of multiple cultures is fluid. It 

is out there in the sense that I do not participate in certain practices and traditions, or possess 

                                                

8
 The creation of a “culture-gram” is suggested by Chang (2008) as an exercise of self-exploration to better locate 

oneself in an autoethnographic inquiry. My own culture-gram is included as Appendix D. 



   

14 

certain belief and value systems. At any moment though, I may take membership in a culture, in 

which case, it would be part of me at that moment.  

From this, we turn to the question, “Is culture shared or personal?” The likely response of 

most scholars would be that culture is shared. The established orthodoxy is that culture – the 

collection of practices, traditions, belief and value systems, etc. – is transmitted from parents to 

children and within communities that perceive members of that community to share certain 

commonalities or worldviews. From these assumptions, it would follow that “there is no such 

thing as culture of one” (Chang, 2008).  

From my deconstruction of culture in my life as well as others, I find my views diverging 

from this established orthodoxy. It seems to me that although we all perceive culture to be shared 

and even communicate using language that is consistent with this belief, culture is in fact 

personal and necessarily so.  This conclusion follows from my discovery of and resonance with 

post-modernist thinking, which in essence problematizes the notion that there exists an objective 

truth. Within this framework, the realities that each of us experiences is necessarily subjective. I 

receive sensory inputs that are filtered by the lens that I wear; therefore, what I experience as 

reality is different from what another person experiences.  

Moreover, what we may all perceive is a shared culture is no more than a representation 

of that culture through our individual lens. Taken one step further, our definition of a given 

culture is subjectively defined. Consider the example of two siblings of indigenous ancestry. 

Both may self-identify as being members of their indigenous culture and yet perceive very 

differently what it means to have membership in that culture. One sibling may associate his 

cultural membership with eating a traditional indigenous diet, while the other may focus more on 

the endorsement of familial values while not really caring for the traditional diet.  



   

15 

More personally, I find myself often in discussions where the term “Chinese culture” is 

casually referenced. During these discussions, there exists a tacit assumption and agreement 

amongst discussants about the meaning of the term Chinese culture. Although we carry on these 

conversations without any problems, I would imagine that if anyone were to question our 

understanding of Chinese culture membership, a plethora of (potentially conflicting) viewpoints 

would emerge. As a first generation Chinese Canadian who grew up in a predominantly 

Caucasian community in eastern Canada, my understanding of Chinese culture would probably 

be very different from another first generation Chinese Canadian who grew up on the west coast. 

The same distinction could be made with two people of the same community or even the same 

family. If such divergent viewpoints exist within a presumably homogeneous group, I can only 

imagine the impossibility of arriving at some consensus about what it means to be a member of a 

given culture. Understood in this way, culture is not some monolithic construct that exists “out 

there”, independent of people. Rather, cultures exist within every individual, constructed by that 

individual. In essence, our membership is to an organization of one, and when we withdraw our 

membership, that organization ceases to be.  

In spite of such plural realities, we all continue to collude in maintaining this fallacy of 

culture as shared. We communicate using language that is consistent with this fallacy. Perhaps, it 

is our social nature, our desire for a sense of connection and belonging. Perhaps, it is out of a 

perceived necessity. We act as if we share a semantic framework so that we are able to 

communicate with each other sensibly. 

Whatever our reason for maintaining this collusion, I believe it is important to 

acknowledge its implications. Having a shared semantic framework does seem to provide a sense 

of security and order in our communications with another. At the same time, I noticed that 



   

16 

assuming a shared culture can limit my curiosity and humility towards the other; and in turn, lead 

to misunderstandings. I noticed this in my interactions with people of Chinese ethnicity, as well 

as between HCPs and their patients.  

The assumption of shared culture can therefore be a double edged sword. As such, I find 

it of practical value to view culture as individualistic. This conclusion compels me to not assume 

and to remain curious about another. When culture is individualistic, I must acknowledge that the 

person with whom I am communicating possesses a uniquely different reality, regardless of our 

use of similar terms.  

To summarize this extensive
9
 deconstruction of culture and how the self is located within 

it, I return to the three questions that began this section. 

Is culture tangible? 

Is culture located inside the person or out there? 

Is culture shared or personal? 

In response to the first, my intuitive reasoning based on our colloquial use of the term leads me 

to understand culture as intangible. It is not the physical objects themselves that is culture but the 

practices, traditions, beliefs and values symbolically underlie them. In relating to cultures, they 

can exist either inside the person or out there. Our membership (albeit a membership of one) is 

fluid, varying with experience and context. Insofar as we define a given culture though, it is like 

our reality, necessarily personal. Having established in this section a common semantic 

                                                

9
 As I reflect on these conclusions, it strikes me how long it has taken both on paper and in my lifetime. I 

believe that this effort will not be wasted however as this understanding has for me and will for the readers help 

make sense of this research inquiry. 



   

17 

framework about my own understanding of culture with the reader, I will later situate myself and 

my cultural identity relative to this research inquiry.
10

 

 In the chapter that follows, I will go more deeply into describing the theoretical and 

methodological frameworks that structure this research inquiry. I will also describe my 

interpretation of qualitative autoethnographic inquiry and its appropriateness in shedding light on 

the present research question.
11

   

                                                

10
 Refer to Chapter 2.2.2 Rationale for autoethnography. 

11
 I must admit that this discussion of methodology will feel like a slight departure from the intimate, 

narrative voice that this thesis aspires to convey. Given the inevitable pressures that come with being situated in an 

academic context, I feel obliged to lay out my arguments for the suitability of my methodological decisions using 

the distantly intellectual voice of established credibility. Chapter 3 Stories will attempt to return to the more inviting 

and relatable tone of autoethnography. 



   

18 

CHAPTER 2: METHODOLOGY 

This section will discuss the theoretical underpinnings of this research inquiry. I will 

describe the social constructivist lens with which this research has been conceived and will be 

interpreted. Subsequently, I will describe the general data collection and analysis methods to be 

used. A rationale will be provided for the methodological decisions that have been made at the 

outset of this study. The section will conclude by considering the ethical concerns in engaging in 

this research project and using this particular methodology.  

2.1 Orienting Worldview 

My worldview or the lens through which I interpret this research is based on the 

assumption that knowledge is a social construction; that is, what each person believes to be true 

is created out of a continual and reciprocal interaction between the person and his or her social 

context (Geertz, 1973). What is true for one person or group may not be for another. This gives 

rise to the possibility of multiple, equally valid and coexisting realities (Crick, 1982). This 

knowledge paradigm contrasts with the positivistic notion of a single universal reality that can be 

discovered through an objective and value-neutral inquiry. Instead, social constructivism 

emphasizes subjectivity and agency. Knowledge is thus co-constructed between the individual 

and society, and is experienced through the subjective lens of the individual.  

This self-oriented research inquiry acknowledges the legitimacy of multiple co-existing 

realities. In this thesis, I report on a single reality, my own, without suggesting that my 

interpretations are somehow legitimized through being presented in this written document or 

academic context. Instead, I merely share my journey as an emerging health care provider with 

the hope of engaging readers in reflection about and becoming more aware of their own reality 



   

19 

and cultural practices. The ultimate goal is in being able to provide more effective, more 

culturally sensitive health care to immigrants and young adults with cancer.  

2.2 Auto/ethno/graphic Inquiry 

My inquiry adopted a qualitatively-oriented, autoethnographic approach to data collection. 

Ethnographic inquiry is a multimodal qualitative research approach that is rooted in sociology 

and cultural anthropology. Ethnography (from the Greek word “ethnos” meaning other people, 

group or race) refers to the “first-hand empirical investigation and […] interpretation of social 

organization and culture” (Hammersley & Atkinson, 2008). Classical ethnographers would often 

spend months or years deeply immersed in a foreign geographical milieu. During this extended 

period of time in the field, the ethnographer would be engaged in the lives of those being studied, 

documenting and interpreting their distinct way of life, values and belief systems, and underlying 

worldviews. The ultimate goal would be to construct an “emic” or insider‟s account of a culture 

acknowledging the social, physical and political contexts in which it exists (Pike, 1967). 

Ethnography draws its data primarily from the fieldwork experience of the researcher. A 

multimodal approach to data collection is used, including keeping detailed field notes, 

conducting interviews, collecting artefacts and writings, engaging in direct and indirect 

observations, all characterized by prolonged immersion in the environment of study. 

Ethnography endeavours to gain a better understanding of the common experiences shared by 

and influences on a culture and to portray them as accurately as possible.
12

 

                                                

12
 The self-oriented (i.e., autoethnographic) nature of this inquiry will be described in more detail in the 

following section.  



   

20 

My research focus has evolved over the course of this research journey. My initial 

interest was in exploring the psychosocial experiences of cancer patients of Chinese ethnicity.
13

 

Iterative refinements have included the expansion of the population to immigrants
14

 and the 

inclusion of the young adult culture.
15

 My early data collection was driven by the question, 

“What are the psychosocial experiences of immigrant young adults with cancer?” I began to 

accumulate data in the form of conversations with patients and care providers, research studies, 

theoretical papers and policy documents. As I did so, I began to notice that much of my findings 

simply reaffirmed the conclusions or stereotypes I gained from my prior review of the literature. 

I became increasingly disinterested in and decreasingly surprised by the data. In spite of my 

“heightened understanding”, what continued to nag me was a “So what?” sort of question. 

“Where and how I fit into this care system?” The data was directed at, for the benefit of and 

could inform someone else. Not me. I was the student, the researcher, the aspiring (but not yet) 

care professional. I did not have membership with this culture of cancer care. 

Over this period, I increasingly reflected on my own experience of this research process. I 

realized that the question that was important to me was “How do I understand my role as an 

emerging health care provider for immigrant and young adults with cancer?” In order to answer 

                                                

13
 My initial research idea was described in a scholarship application, which is included in the Appendix. 

14
 The decision to focus on the experiences of immigrants rather than people of Chinese ethnicity was 

motivated by my recognition that culture ought to be defined according to experience rather than geographical or 

geopolitical regions. Refer to Chapter 1.4 for an expanded discussion of culture.  

15
 Young adulthood (Arnett, 2001) emerged from my review of the cancer care literature as well as my own 

experience as a challenging transitional life stage that is often overlooked. 



   

21 

this question, I had to turn the research microscope on myself. In doing so, my ethnographic 

inquiry became an autoethnographic inquiry.  

What constitutes an autoethnography remains unclear and contested. This term is often 

used synonymously with other forms of self-exploration like autobiographies, memoirs, 

recollections, personal journals and stories (Charmaz, 2006). At its core, autoethnography is a 

research inquiry into oneself. Through it, one gains a better understanding of the cultural context 

in which one‟s life is situated. Whether such an understanding is meant to represent a wider 

social culture has been an issue of scholarly contention as well (Hunt & Junco, 2006).  

Anderson (2006) considers autoethnography as having five key features: complete 

member researcher status, analytic reflexivity, narrative visibility of the researcher‟s self, 

dialogue with informants beyond the self and commitment to theoretical analysis. Complete 

member researcher status refers to the requirement for the researcher to be a member of the 

social world in which she or he is studying; that is, only those who have experienced cancer 

themselves may engage in an autoethnographic inquiry about the experience of cancer. This 

allows for a different and arguably more intimate understanding of the experience or cultural 

context than what could be discovered by a cultural outsider. In this way, the autoethnographer 

occupies the dual role of the observer and participant in the truest sense.  

Some scholars argue that what follows from this insider membership is an obligation to 

analytic reflexivity (Anderson, 2006; Wolcott, 2004). Analytic reflexivity is the process of 

inferring from the personal and self-observant experiences to the larger social world in which the 

researcher belongs. Anderson refers to this as a “[rising] above idiographic particularity to 

address broader theoretical issues” (p. 379). Scholarly debate continues on this point however. 

Acknowledging a somewhat more post-modern take, Ellis (2004) contends that the primary goal 



   

22 

of autoethnography ought to be to accurately represent the researcher‟s emotional experiences, 

not to generalize. Such a commitment to emotional fidelity would compel readers to journey 

alongside rather than analyze at a distance. As Clandinin and Connelly (2004) notes that reading 

others‟ self-narratives can evoke self-reflection and self-examination. Given my own resonance with 

post-modern subjectivity, I aligned this thesis more so with the latter evocative autoethnographic 

approach. 

2.2.1 Rationale for adopting a qualitative ethnographic approach.  

This research is discovery-oriented. Although many of the premises are drawn from the 

literature, I tried to remain relatively unconstrained by preconceptions. The aim was not to 

validate or disprove a particular theory, nor is any one particular theory used as framework to 

guide data collection or interpret the data collected. The phenomenon of experiencing a life-

threatening medical condition while transitioning from one culture to another is very poorly 

understood. I therefore engaged in this inquiry with an open ear and mind.  

Camic and colleagues (2003) perceive the fundamental goal of qualitative researchers as 

endeavouring to understand the lived experiences and the meanings attributed to those 

experiences. These experiences are embedded in an individual‟s circumstances, and can only be 

understood when considered in the context of the individual‟s family, community and society. 

Such understanding cannot be gained through traditional hypothetic-deductive models of 

knowledge discovery. Rather than creating highly controlled, distally approximate experimental 

settings (Hammersley, 1990), this research will be grounded in my own world experiences in 

engaging with people, events and places at the intersection of immigrant, young adult and cancer 

cultures.  

Amongst the various qualitative research methods, the ethnographic approach seems 

especially well-suited to answer the current research questions. Qualitative research with 



   

23 

vulnerable populations such as IYA with cancer can be challenging, especially when studying 

illness. Trust for the researcher is an integral component to gaining full cooperation of the IYA 

in research participation (Broome & Richards, 2003). Without having established a trusting 

relationship, participants may be reluctant to share their sensitive and private experiences of 

cultural transition and illness. Ethnographers, by their prolonged immersion in the research 

context, are afforded the opportunity to develop a trusting relationship with the IYA. Indeed, 

Camic and colleagues (2003) suggested that, because youth may be suspicious of or unfamiliar 

with the nature of qualitative research, researchers would do well to meet with participants on 

many occasions and to employ non-interview based data collection methods.  

Ethnographic inquiry‟s multimodal approach to data collection also substantially reduces 

the linguistic demands of participants as compared to interview-reliant qualitative research 

methods. While expressing the subtleties of lived experiences would be difficult for anyone, the 

difficulty is of particular concern amongst individuals whose first language is not English. Rather 

than extrapolating from conversations, ethnographers may collectively interpret data gathered 

through directly observing and participating in the experience being studied to arrive at a more 

content valid account of the lives of the participants (Mathison, 1988). Moreover, to neglect 

would be to ignore the complex relationships between peoples‟ attitudes and behaviours 

(Hammersley, 1990). Where discrepancies exist, ethnographers are able to follow up to obtain 

clarification. For these reasons, Suárez-Orozco and Suárez-Orozco (2001) argue that an 

ethnographic approach is best suited for research with immigrants.  

Additionally, ethnographic inquiry engages a participant‟s whole social context. In order 

to ensure comprehensiveness
 
and encourage a more reflexive analysis of the data, ethnographers 

often converse with family members, friends and peers (Kelly, Pearce, & Mulhall, 2004). For 



   

24 

IYAs with cancer, caregivers and health professionals may also contribute valuable 

contextualizing information. By collecting data using multiple methods and from multiple 

sources, autoethnographers are able to collectively interpret the data in order to gain a more 

contextualized understanding of their own experiences.  

Rather than being bound by a linear research protocol, ethnographic inquiry employs an 

emergent research design that is responsive to ever-changing circumstances, and the demands of 

the study and its participants. Instead of being bound by a particular research topic or set of 

questions, the ethnographer is able to consider what is currently uncovered and refocus and 

refine subsequent lines of inquiry. These features provide a means for the research inquiry to be 

responsive to what is most pertinent to me in considering the research question.  

2.2.2 Rationale for autoethnography. 

The self-focused, autoethnographic approach to research is especially well-suited to this 

inquiry for a number of reasons. That said, I will make no effort to pretend that this was a 

carefully made decision at the outset of my journey. It became well-suited out of necessity, not 

academic argument. Although a narrative account of how my journey turned inward is outside 

the scope of this section
16

, I want to comment on the value of the autoethnographic approach to 

research, especially as it relates to my profession of counselling psychology. 

Autoethnography is quite unique as an emerging investigative approach in academia and 

research. In contrast to traditional-positivistic approaches to research that aims to dismiss the 

researcher‟s role and influence on the research process, autoethnography puts the researcher 

front and centre; it acknowledges the researcher as the tool, decision maker and subject of the 

research process. This thesis does not try to hide the imperfection (or more accurately cultural 

                                                

16
 Refer to Chapter 3.1.13 Turning inward. 



   

25 

location) in which all research is generated. In laying out every aspect of my research process for 

you, the reader, I make it available to be examined, and endorsed or rejected for its 

appropriateness to your own circumstance.  

Moreover, as I became increasingly preoccupied and curious about my own place and 

role as a health care provider (HCP), autoethnography emerged as a valuable methodological 

framework for examining my experiences. Its emphasis on reflexivity, or the researcher‟s own 

influence on the research process, served as a way to make sense of how I perceive my current 

role of HCP in light of my past experiences. I resonate with the notion of reflexivity in research 

as it parallels a fundamental commitment in the profession of counselling psychology to self-

awareness. A central tenant of counselling is that in order to help others gain insight into their 

lives, we must first do so for ourselves. Gaining a greater self-awareness becomes almost an 

ethical obligation as it informs the way my practice. Such knowledge allows me to note how my 

actions and reactions are influenced by my own experiences over that which exists between the 

client and me. Like with reflexivity in research, the aim of exposing these influences ought not 

be to separate it out from the process; rather, an increased insight can greatly inform the process. 

2.2.3 Situating myself. 

I myself am situated in a social and historical context which has profoundly influenced 

my experience of the world.
17

 The decisions that I make in conceiving this research as well as 

my interpretation of the data are inevitably filtered by my worldview. As such, I will situate 

myself in this research process so that readers may more accurately understand why certain 

decisions or interpretations may have been made.  

                                                

17
 Refer to Appendix D: Culture-gram for a pictorial illustration of my multiple cultural identities. 



   

26 

My worldview is significantly influenced by my experiences as a Chinese-born 

immigrant to Canada. Having immigrated to Canada from China with my parents as a child, I 

have experienced the challenges of adjusting to a new socio-cultural milieu and integrating 

different, often conflicting sets of values and worldviews. I have witnessed my parents‟ socio-

cultural and financial struggles having left the safety and support of an extended family, and 

having given up decent careers for tiring, low-paying jobs that they were overqualified for. Their 

long hours away from home created an environment where I had to grow up quickly and learn 

many things on my own. Over the course of growing up in Canada, I have realized many of the 

benefits and opportunities that this country has to offer. In meeting others who are newly arriving 

in Canada, I feel both awe and despair in recognizing the struggles that many must face and the 

untold sacrifices that they have made and continue to make.  

As a graduate student and aspiring counselling psychologist, I hope to be able to support 

and advocate for individuals who struggle in their transition to a new country. Moreover, I hope 

to be able to help people identify and strengthen the support systems that exist within their 

families and social networks. Within this ethnographic inquiry, I hope that my research efforts 

and the obtained findings will sensitize and inform mental health and medical practitioners, as 

well as informal care providers of the often unspoken struggles of immigrants with cancer.  

As a researcher who has experienced or witnessed some of the major life transitions that I 

endeavour to better understand, I bring to this inquiry my own assumptions about what it has 

meant for me to be an immigrant, a young adult and a care provider for cancer patients. Rather 

than denying my own reality, I endeavour to acknowledge it throughout the research process.  



   

27 

2.3 Collecting Data  

I employed a multimodal approach to better understand my role as an emerging health 

care provider to immigrants and young adults with cancer. Over the course of eight months, I 

adopted a number of different roles related to cancer care and drew on a multitude of different 

data collection methods.
18

 The multiple data sources serve as the basis for triangulating and 

therefore validating self-reflexive data. Moreover, the eight month period spent in the field gave 

me a chance to monitor what were some very interesting changes to my understanding of the 

HCP role and how I fit into it. The following sections describe these roles and methods. 

2.3.1 Roles. 

I took on a number of different roles through this research inquiry, including as a 

researcher, a volunteer, a student and a colleague. Together, these roles afforded me a chance to 

understand what it means to be a HCP and my relationship to it from different vantage points.  

Most saliently, I began this journey as a social science researcher. This entailed 

coalescing my lived experiences and interests into a research question, formulating a research 

proposal, obtaining ethics board approval, forming partnerships with members of the community 

and institutional gatekeepers, engaging with participants, applying for funding and more. This 

intricate and often arduous process began nearly four years ago in beginning my graduate studies 

and has provided no shortage of moments of reflection.  

                                                

18
 Refer to Appendix I: Data Log. 



   

28 

I also visited the main cancer care centre on a weekly basis as a volunteer in the 

chemotherapy and inpatient wards.
19

 My time there was spent chiefly offering companionship to 

patients and family members, liaising with the centre‟s staff and supporting volunteer events. In 

order to take on this role, I was required to attend several training workshops. One workshop in 

particular was very thought provoking as it challenged me to examine my conception of death. 

Other challenges came in my perpetual struggle to separate my inert volunteer role with the 

multiple other roles that I adopted. This was reflected on at length in several of my experiences.  

I also participated in a four month course on interprofessional psychosocial oncology. My 

classmates were from a variety of disciples (including social work, nursing and counselling 

psychology) were at different stages of their career and lived all across Canada. The course 

consisted of readings, individual and group assignments and a weekly online discussion on topics 

in the area of psychosocial oncology. The course facilitator would press us to consider how 

professionals with different disciplinary expertise could collaboratively provide the most 

effective care possible to patients and their family. 

As an ongoing role, I continue to engage in my clinical training as a Master‟s student in 

the counselling psychology program. Throughout the research process, I have been working at 

two practicum sites that have allowed me a valuable opportunity to make sense of my role as a 

mental health service provider outside of a cancer care setting. Additionally, my colleagues in 

the program served as a valuable platform for discussing and making sense of my thought 

processes over the course of data collection.  

                                                

19
 Unless specifically asked about, I did not bring up my research project for discussion. I felt that, in my 

role as a volunteer, this would have inappropriately focused the conversation on me rather than the patient. Although 

I was mostly able to negotiate these multiple roles during my volunteer time, I did sometimes struggle. 



   

29 

2.3.2 Methods and sources of data collection. 

Compounded upon the roles that I adopted, I also collected data in a multitude of 

different methods. Multiple data sources serve as the basis for triangulating and therefore 

validating self-reflexive data (Chang, 2008, Mathison, 1988) 

The data sources can be divided into two broad categories, outward focused methods (e.g., 

interviews, observations, reviewing the literature as well as other textual and non-textual 

artefacts) and inward focused methods (e.g., self-observations and self-analyses through 

journaling, creating a personal culture gram and reviewing personal memories). Both inward and 

outward focused methods were used in this research. 

Formal hour long interviews were conducted with five health care professionals 

(including counsellors, social workers and a practice leader), one volunteer coordinator, one 

immigrant young adult with cancer and one family member. I met with some participants on 

multiple occasions. All of these formal interviews were both semi-structured, being guided by a 

defined set of topics and questions – so that discussions can be focused – while allowing 

participants the flexibility to talk about any topic in depth.
20

 Hunches and realizations from prior 

experiences informed the focus of subsequent discussions in a continuously self-refining way. 

A review of research in the domain of immigrants, young adults and cancer identified a 

non-exhaustive list of potential topics for discussion, including relationships with family and 

friends; home, school and work environments; coping with stressors and transitions as a young 

adult, immigrant or cancer patient; interpersonal dynamics in medical management (Kim, 

Sherman, & Taylor, 2008; Liu, Mok, & Wong, 2005; Rich, Lamola, Gordon, & Chalfen, 2000; 

                                                

20
 Refer to Appendix J and K: Interview Questions 



   

30 

Zebrack, Bleyer, Albritton, Medearis, & Tang, 2006).
21

 As the research focus turned from the 

experience of patients to my own as an emerging health care provider, a parallel change occurred 

in the questions that I asked. In interviewing health care professionals, I became more interested 

in their own struggles, challenges and satisfactions in providing care to immigrants and young 

adults with cancer. As pointed out by Chang (2008), interviews with others in autoethnography 

“provide external data that give contextual information to confirm, complement, or reject 

introspectively generated data” (p.104). 

Observations were mostly recorded during weekly visits to the cancer agency as a 

volunteer. As my autoethnographic inquiry proceeded, it became very apparent that opportunities 

to examine my role as health care provider was being prompted by all types of circumstances. I 

soon began to treat each moment of my life as a chance to reframe my experience in the context 

of my research question. I no longer distinguished when I was in the field and when I left it. As 

such, I recorded observations during meetings with participants, at conferences, after impactful 

moments or conversations and in a number of other circumstances. I noted the physical 

environment, the people present, significant interactions and dialogue. Particular attention was 

paid to my own sensual experiences and emotional reactions, such as the sights and sounds of an 

outpatient chemotherapy waiting area or my despair or rage in a particular patient interaction. 

During observations, I assumed a participant-observer role. This dual role presupposes 

that it is impossible to detach oneself as an inconspicuous observer who is able to withhold one‟s 

own biases and worldviews (Davies, 2002). What is more, such disengagement may hinder the 

researcher-participant rapport and thus prevents the researcher from gaining an emic perspective 

of the experiences of the participant (Hammersley & Atkinson, 2008). Conversely, it would be 

                                                

21
 Refer to Appendix B: Literature Review. 



   

31 

foolish to assume that I may through mere effort blend in seamlessly as a full participant in their 

lives. It is difficult to be a participant in the same way that it is difficult for a therapist to be a 

friend. At the end of the day, both the researcher and therapist have fiduciary responsibilities that 

a participant and friend do not. “Going native” also becomes problematic because it makes more 

difficult the task of distinguishing personal interests from research interests. Given these 

considerations, I assumed a participant-observer role, which according to Davies (2002) 

necessitates a critically reflexive mindset. Reflexivity in this study will involve maintaining 

detailed records of my fieldwork, taking field notes and creating time while away from the field 

to reflect on my notes.  

A commitment to the participant-observer role was very important to me. Given that note 

taking is often out of context and would have disrupted the natural interactions of people, it was 

often necessary for me to first make mental notes. When circumstances allowed (e.g., after an 

engaging conversation with a patient while volunteering, in securing a seat on a long bus ride), I 

would find a quiet refuge and make some brief written or verbal notes. Once home, I would 

transcribe and expand upon these notes into longer narratives. The usage of present tense in these 

expanded narratives denoted my reliving of each significant moment while engaging in this 

writing. Each of these note taking steps allowed me to insert into the narrative my meta-

commentary (e.g., reactions, hunches, realizations) and in turn progressively deepen my reflexive 

analysis.  

In addition to observations, I collected and reviewed textual and non-textual artefacts. I 

dug back into my archives and found my graduate school admission Statement of Intention, 

scholarship applications and numerous self-reflection papers. I amassed a mountain of 

publications from the cancer agency and training workshops, relevant research papers and radio 



   

32 

broadcasts. I took pictures of scenes that were especially meaningful while volunteering, 

completing errands, exercising along the beach. Although many of these artefacts have not been 

created by or about me (as would be the traditional role of artefacts in autoethnographic studies), 

I found them particularly striking in their content, their location, their intended use as they 

pertain to cancer care provision. I considered my reactions to these artefacts as reflecting my 

worldview and cultural location as well as being reflective of how a cancer patient or family 

member may respond to them. 

2.4 Data Analysis 

The research question that guided my analysis was “How do I come to understand my 

role as an emerging HCP for immigrants and young adults with cancer?” In considering the 

personal nature of the inquiry, I will acknowledge at the outset that my inquiry has been an 

entirely selfish one. As such, the primary goal of data analysis was to provide a mechanism for 

my own reflexive analysis.
22

 Although this process aided me in identifying certain important 

ideas that I would discuss further in the narratives of Chapter 3: Stories (e.g., the experience of 

interpersonal divides or a desire for normalcy), I found that the ideas that carried greatest valence 

for me came from the single conversations with a colleague or encounters at the cancer agency.  

In light of this theoretical posturing, I do not aspire (as other inquiries may) to achieve a 

level of description that enables reproducibility. In fact, reproducibility would have been difficult 

to achieve for a number of reasons.  The greatest challenge I experienced through data analysis 

was in accommodating the large volume and variety of data collected while in the field and 

                                                

22
 This may be a viewed as a divergence from more phenomenological or grounded theory inquiries that 

endeavour to distil research data down to essentials or universals.   



   

33 

through reflecting and journaling. I tried to lay out a defined protocol for data analysis at the 

outset, but given the emergent nature of the research inquiry, the protocol was difficult to adhere 

to. I found myself constantly having to revise the protocol to accommodate a new source of data 

or feeling paralyzed in not wanting to engage in analysis or further reflection for fear of having 

to alter the protocol. Very quickly, the task of organizing and analyzing the many diverse sources 

and forms of data became overwhelming. 

In the end, rather than a single systematic plan, a number of evolving plans were 

implemented for data management and analysis. Some general principles were established. For 

example, I labelled each piece of data with a title, location and date; used a folder system to 

organize different sources of data; created regular and separate entries for each significant 

encounter or conversation; and literally bracketed self-reflections from observations in my field 

notes.
23

 The qualitative data analysis software package Atlas.ti was used to centrally store the 

data, including all field notes, reflections and research articles. Where possible, printed or 

hardcopy materials such as pamphlets and brochures were digitized. Otherwise, a brief journal 

entry was used in its place.  

Using the coding functionality of Atlas.ti, I made at least one complete pass of all the data. 

In the first pass, I quickly coded each meaningful passages, aiming for maximum coding density. 

Labels (e.g., “hope”, “burden on caregivers”, “normalcy”) were liberally created in order to 

begin the process of clustering codes of similar meaning. As I proceeded through the first pass, I 

periodically reviewed the codes, the labels that the codes were assigned to and the internal 

                                                

23
 The attempt at bracketing my own reflections from the observations in the field was difficult as the 

distinction between what is observed and what I contribute to an observation is oftentimes unclear. Even a 

description as seemingly objective as “he was tired” may be argued to be my own interpretation of an event.  



   

34 

consistency of these labels. This prompted me to constantly decide whether to create a new label, 

merge similar labels (e.g., “Despair” and “Depression”) or delete redundant labels (e.g., 

“Compressed time”, “Sense of time”).  

This process roughly follows what Glaser and Strauss (1967) describes as the constant 

comparative method. As interpreted by Hammersley and Atkinson (2008), each passage of data 

coded in a particular label is examined for similarities with and differences from other passage in 

that same label. It is possible and likely that the codes that are used to organize and categorize 

the data in the early stages may become refined or changed in light of new data. Vaguely defined 

labels may become increasingly precise and descriptively rich. New labels may emerge. This 

necessitates frequent re-readings of the data to look for new instances of the emerging labels. 

A second and third pass of the data served to reduce the coding density, leaving only the 

most informative passages and labels. Some pieces of data were overlooked in this process given 

that it was immediately obvious that they did not add any value to my analysis. Given that data 

collection, management and analysis occurred concomitantly, new data was constantly being 

added to the analysis. This posed a challenge as it frequently prompted me to re-examine my 

existing label system, and at times return to and revise already coded passages. 

2.4.1 Questions for reflexive analysis. 

Not to be lost in this process of coding, I had to repeatedly remind myself that what was 

important was to engage in reflexive analysis.
24

 This would allow me to better understand my 

                                                

24
 The constant comparative technique herein described is most commonly often associated with the 

grounded theory method (GTM; LaRossa, 2005). GTM, originally developed by Glaser and Strauss (1967), aims to 

construct an explanatory theory of a human phenomenon grounded in the data. As a divergence from the grand 

ambitions of most studies that employ GTM, I am taking advantage of the constant comparative technique to 



   

35 

role as an emerging HCP as well as connect the cultural factors that situate these realizations. A 

number of questions were generated to spur this reflexive analysis. 

 What from my own experiences, biases, worldviews could be influencing my perception 

of this research encounter or interpretation of this data? 

 What might I not see/understand as a result of my cultural membership? 

 What do my own reactions to this situation say about my cultural membership? How 

would this interaction be different if my cultural membership were different? 

 How might the other person‟s cultural membership be affecting our current encounter or 

his/her perception of me? How does this person perceive my cultural membership?  

 What is the significance of this [observation/interpretation] as it relates to 

[people/culture/my research question]? 

 In what way does my new awareness of my identity help to bring into focus the 

relationship between the researcher and [others in similar situations]? 

These questions serve a number of functions. They provide a framework for creating labels 

during the coding process (e.g., “culture clash”, “culture shared”, “medical culture”). More 

importantly, it guides my reflexive journal entries. In reading through an observation or listening 

to an interview, I regularly referred to these questions to help me reflect on my cultural 

membership. In coming across a particularly meaningful passage, I would create a new journal 

entry to reflect on this realization. 

  
                                                                                                                                                       

construct a coherent personal theory, one that explain how I fit in as a HCP for immigrants and young adults. 

Another point of divergence is that this analysis focuses less of an emphasis on the codes, nodes or themes that 

emerge. The codes more accurately serve as tools for my reflexive analysis. 



   

36 

CHAPTER 3: STORIES 

3.1 Directions Emerging 

3.1.1 Arriving. 

It was evening after I received the phone call from Dad that I touched down in 

Washington Dulles Airport. My cousin Charlie met me. The drive from the airport was markedly 

cheerless, contrasting sharply the holiday festivities and cheer that seemed to reach even into the 

security-screened, border-protected regions of a major US airport. I tried to make small talk but 

the words seemed effortful.  

We don‟t do a great job staying in contact in my family. It has been more than ten years 

since we last spoke. We were visiting him and Nímāmā during a summer family road trip. I was 

eight. He was 19. It was a carefree time. How things have changed. 

“Do you need anything?” he asks.  

Yeah, my holidays back, I think. “No,” I answer. I have no idea where we are going. 

Twenty-four hours after receiving my orders, I am still dumbstruck by my circumstances. I have 

been thrust into this mission and everybody seems to know what I‟m doing except me. I wonder 

why I am here, or perhaps why it is me that is here.  

The highway sign overhead said Baltimore. As we approached the city, I saw a large 

sports stadium. We passed the waterfront. It was humming with activities and lights. There was a 

large boat completely lit up. My cousin noted that it is permanently docked, serving as a 

restaurant. I feel a momentary rush of excitement and intrigue. I picture a packed and boisterous 

stadium, a floating restaurant full of excited tourists. I would explore each of these sites if I were 

visiting here. But I‟m not, reminds a voice inside. My reverence immediately vanishes. No, I‟m not 

here to visit, I say to myself. What am I here for? I wonder. I have no answers to that question. 

We pass through the downtown and head straight to the hospital. I feel my heart start to 

beat faster, the way a performer recognizes that it‟s coming up on his turn. I begin to prepare. 

How am I to address her? In English or Mandarin? Am I even going to be able to recognize her? I 

feel so unprepared. What am I doing here? I wonder again.  



   

37 

My cousin leads me out of the parkade and into the hospital. I can tell it‟s a prestigious 

hospital. We pass grand lobbies, stylish décor, glistening floors. Up a flight of stairs, into an 

elevator. Out the elevator and to the left. I try to remember the route. 

3.1.2 Strangers meeting. 

The first thing I notice is the hospital cap that covers her head. She is sitting in her bed, 

pillows propping her up. Even though she is covered by the gown and bed sheets, I can tell that 

she is weak. Her face is emaciated, but I recognize it as belonging to my Aunt from the brief visit 

when I was eight, from the black and white photos of her youth. She is wearing a gentle and 

exhausted smile, the way a parent welcomes a child home in the late hours of the night after an 

especially long day at school. 

 

Image 1. Personal photo from when I was eight. It is one of the only memories I had of Nímāmā. 

“二姑姑你好,” I address her shyly. She feels like a stranger to me. I grew up, alongside 

many cousins in a flat owned by my grandmother. She, however, had left China to obtain her PhD 

in the United States before I was born, so the only impressions I have of her are from pictures 

and from our trip more than ten years ago. She was indeed a stranger, a stranger with whom I 

was related by blood and would now be getting to know over the next number of weeks. 

“Hello,” she gently greets in Mandarin. “Was the flight okay?” Her words are soft, 

probably due to her exhaustion. 

My cousin stays for a while to chat. Our conversation feels unusually distant, even 

between them. I wonder if it is due to my presence – this stranger who was only a pudgy little boy 



   

38 

with a high pitched voice when they last saw him – or perhaps the distance is between them. 

Regardless, I continue on in the conversation as best as I can. 

He eventually excuses himself to go home, needing to work the next day. I am prepared 

for this but it still comes as a blow. I‟m being thrust into ground zero, alone and without any 

forewarning or direction. I walk him out, taking a deep gulp of air. Alright, now it‟s just me. It‟s time 

to perform. I try to suppress the anxiety that is growing inside me. 

3.1.3 Adrift. 

I try to take in the room, this space which will be my base for the next many days. The 

space is large, almost overly so. There is a single bed in the middle with ample space all around. 

A curtain hangs overhead to give privacy when needed. There is a bathroom in the back of the 

room. A computer terminal is set up beside the door, a Lazyboy across the room beside the 

window. Ah, this will be my refuge for the days ahead. As I become visually acquainted with this 

space and with Nímāmā‟s presence, I begin to feel more at ease and yet still just as confused. I 

feel adrift at sea, directionless, aimless, just bobbing, moving with the currents of the water. My 

only purpose: to wait it out. 

Over the subsequent days, I spend much time sitting in the Lazyboy and wandering the 

halls of the hospital. It is quiet except for the rhythmic beeps of the hospital equipment. While I sit 

and star off into space, my mind constantly drifts to the holiday festivities that I am missing in the 

world outside, the world that is leaving me behind.  

3.1.4 Connections. 

Nímāmā is a kind woman. I sense a sincerity and authenticity in the way she relates to 

me. She doesn‟t treat me like the little boy that she last met or the youngest of the cousins that 

everyone has to take care of. Maybe it is because we never had the time to establish such a 

relationship. I am immensely relieved that this is the case. We talk about the progress of my 

studies, contemplate on what I want to do with my life, reminisce about the past. I feel respected 

rather than talked down to. I feel an easiness germinating in my body. How have I lived for so 

long without getting to know this beautiful person in my family? And now, it takes these 



   

39 

circumstances to bring us together. A wave of disappointment hits me, then sadness, then shame. 

I have not been the good nephew that I should have.  

There is no mention of cancer in our conversations aside from her complaints of 

symptoms – lack of appetite, no energy, pain in her abdomen. Perhaps she doesn‟t think I would 

understand. Perhaps she doesn‟t want to bother me. Perhaps she doesn‟t think that it would 

make any difference. Regardless, we relate as though there is no such thing as cancer. We are 

just two long separated family members, brought together by happenstance, now compelled to 

get to know each other in this very strange setting.  

3.1.5 Where do I belong? 

As the days pass, the setting becomes increasingly familiar. The Lazyboy is more 

comfortable to sleep on than I thought, or maybe I am just getting used to the awkwardness of it. 

The chair has a lever that releases the leg support so that it easily converts into a makeshift bed. 

I‟m grateful for the setup but can‟t help but feel impatient by this stagnant existence. There is a 

pervasive gloom in the room, a heaviness that makes it hard to breathe, hard to think, hard to 

relax. The ward is practically empty and without stimulation. I feel confined, like an airplane 

passenger on a flight with no end in sight. Every so often, I would stand up and walk around the 

room or do some push ups. I have so much nervous energy pent up without an outlet to expend it. 

And yet, when I sit back down, my mind often returns to Nímāmā. I imagine myself in her 

shoes; or rather her hospital gown, her bed, her catheter, her feeding tubes. My thoughts 

juxtapose the despair of the current circumstances against the holiday cheer that I was missing. I 

imagine feeling impatient with the treatments, feeling angry with the circumstances, feeling left 

behind by life. My confinement all of a sudden seems so miniscule in comparison to her 

confinement. How selfish I am. I feel so guilty, so stupid.  

Nímāmā seems to notice. She encourages me to head to the cafeteria for food. I try to 

dismiss her rather accurate interpretation. “That‟s okay. I can just grab something from the fridge.” 

It is stocked with snacks and juices. The selection is starting to become intolerable and I would 

much rather something else, and yet I feel uncomfortable, even guilty with the care that I am 



   

40 

receiving. This isn‟t right, I think. I‟m not supposed to be the one being taken care of here. She 

insists. I give in, though not feeling entirely defeated. At least I made a stand. I let it be known that 

this focus on me is something that I am uneasy with. It is wrong. I leave the room behind and 

head off in search for the cafeteria feeling liberated and yet guilty at the same time.  

3.1.6 Bearing it. 

I have done some exploring since I arrived. I have memorized the route from the parkade 

to our room, as well as a few detours in between. The way to the cafeteria, the library, 

chemotherapy ward. Rather than take the elevator, I would opt of the stairs. Sometimes, in 

reaching the bottom, I would climb all the way back up again, and then down, and then perhaps 

up again. I have so much energy built up in me that I am desperate to find an outlet for it. I feel 

frustrated with my confinement.  

I have come to discover that the ward itself is pretty humdrum. Aside from us, there 

seems to be only one other family in this wing over these holidays. They are of Asian heritage as 

well though we don‟t interact. Why? I don‟t know. 

My cousin has come by a few times after work. We go out to pick up some groceries 

during one of his visits. He suggests a few things but I decide on some quick and dirty TV dinners. 

First time in my life with TV dinners. I scrutinize over the nutrition label of each box. God, I must 

be losing so much fitness these days. The thought reminds me of my confined predicament. I 

grind my teeth in resentment. A part of me fiercely tries to suppress this feeling. “This is your 

duty,” the part insists. “It is your duty to bear this discomfort for Nímāmā.” 

The dinners don‟t taste all that bad.  

3.1.7 Deep sleep. 

I am half awakened by some activity. My eyelids, glued shut by a welcomed deep sleep, 

takes great effort to pry open. It is dark except for a light in the distance. I feel a soft padding 

underneath me, a light sheet covering me. In my dazed and semi-conscious state, I realize that I 

am not at home. I am lying in my makeshift bed in a hospital room, Nímāmā lying close by. Our 

room door is open. Light from the hallway is streaming in. We have visitors. Nímāmā must have 



   

41 

awoken in the night from some pain in her abdomen, some constriction in her breathing. The 

nurse is probably administering some medication, some intervention to ease her discomfort. It‟s a 

familiar routine. I don‟t make much of it. They‟ve got it handled, I assure myself. With that, I drift 

back to sleep, eager to find that welcomed deep sleep on this makeshift bed. 

3.1.8 Misunderstandings. 

It is morning. Sunlight is entering through the window and filling the room with a warm 

glow. It is a welcome juxtaposition to the sleepless night that Nímāmā experienced. Although I 

had slept comfortably, she was kept awake by abdominal pain that would not go away. She feels 

nauseous; the food does not appeal to her. 

A convoy of doctors enter the room. It must be time for their rounds. One takes the lead, 

while the others observe the conversation. 

“How are you this morning?” asks the senior doctor. 

“Fine,” she answers dismissively. 

The doctor asks for permission to examine her abdomen. She consents by pushing aside 

the sheets that keep her warm. He leans in to feel around her stomach, perhaps feeling for 

changes to the masses growing inside her. He stands back, remarks a few things to his 

colleagues and returns to her. She notes that she doesn‟t have an appetite. He encourages her to 

do some walking if she is able to. He turns to me suggesting that I may be able to help her in this. 

I feel a rush of excitement in being included in the process, in being invited to help.  

He also discusses with her the plans ahead, wonders whether she feels up for heading 

home soon. A brief expression of horror flashes across her face. It occurs so quickly that none of 

the physicians know. “No, I think I would rather stay here for now, in case something happens,” 

she answers. The doctor tries to ease her worries, mentioning something about home care 

nurses.  

I follow this conversation from my Lazyboy, an uneasiness growing inside me. There 

seems to have been a misunderstanding here. When she expressed concern about something 

happening, it wasn‟t so much in reference to abdominal pain and sleepless nights, but rather 



   

42 

something else. He however has a very different framing of the situation and so concerns that are 

peripheral to the medical ones don‟t cross his mind. I want to speak up but I don‟t know where or 

even if I belong in this discussion. I wait eager to hear Nímāmā clarify for herself. She does not. 

Perhaps she really does perceive her worries about going home as medical. Who am I to dispute 

it? I remain silent, watching, not sure what my role is in this. 

3.1.9 Bear bear. 

Christmas has arrived in our room. One could hardly tell the difference, it being as quiet 

as always. The only indication was a red and white Christmas gift parcel that was delivered 

yesterday. In it, there were some beautiful flowers, a teddy bear and a card that was written by a 

local elementary school student. Nímāmā felt uplifted by the kind gesture. She was touched. 

Seeing her spirit somewhat raised, I feel tremendous gratitude for those who had gone through 

the trouble and effort of putting this parcel together. We read the card together with the youthful 

scribbles, appreciating the simplicity of the student‟s well wishes. I wonder if we should give the 

bear a name. Nímāmā decides on 熊熊 (pronounced xióng xióng , translated as Bear Bear). We 

all agree that it is a fitting name, a playful name. The repeating of the word implies a close and 

fond relationship with someone that is one‟s junior. Nímāmā holds the stuffed animal up in both of 

her hands, looks into its eyes. “Xióng Xióng.” And with that, she breathed life into the bear, a new 

companion in our hospital room fellowship.  

My cousin came early this morning as well. Although there is none of the hoopla of 

Christmas trees, lights, music and presents, it feels quite festive in our quiet hospital space. I 

notice how our conversation seems to flow. It is less restrained, less careful. We even manage a 

few laughs as we sat around the bed talking about the most frivolous things.   

We find a deck of cards and decide to play 争上游, an old game from childhood. We deal 

four piles, one laid in front of where Xióng Xióng  sits, peering into the centre of the bed that has 

now become our makeshift card table. We play intensely, occasionally calling out to Xióng Xióng, 

wondering why (s)he is taking so long to lay down a card. I am struck by the levity of this moment, 



   

43 

how grown adults – and especially Nímāmā in her condition – are able to shed our shackles of 

adultly restraint and participate so playfully, so purely. I yearn for this sentiment to last. 

My cousin‟s cell phone suddenly rings. It stuns us for a moment. He answers it. It is our 

Aunt, Nímāmā‟s younger sister. The phone is passed to her. They talk. My cousin and I disperse, 

roaming around the room to keep ourselves occupied. 

The phone call ends. There is an uncomfortably long silence. I feel like a guest who has 

walked into a party conversation to find everyone remarkably quiet. Where did that sentiment go? 

Were we all just pretending, just constructing a wishful fantasy that does not exist? Whatever it 

was, it has now gone, perhaps never to be found again.  

3.1.10 Auld lang syne.  

It is New Years Eve. Nímāmā and I left the hospital shortly after Christmas and moved 

into my cousin‟s two bedroom apartment. Although it might otherwise be spacious, it feels quite 

small with the entirety of Nímāmā‟s belongs packed into boxes and stacked all around the 

apartment wherever there is space. My cousin and his partner are in one bedroom. Nímāmā has 

been set up in the other bedroom across the way while I‟ve happily found the couch in the living 

room which faces one large screen TV with satellite programming. It is tuned to the New Year‟s 

programming from Time Square. Although I have never headed out to celebrate the New Year, I 

have always gotten great delight in following the excitement on TV, seeing the horde of people 

gathered in Nathan Phillips Square, Times Square and the many other celebration plazas around 

the world ringing in the New Year. I feel a rush of excitement in connecting with this routine.  

I hear my cousin and his partner speaking loudly, perhaps arguing from inside their room. 

My cousin‟s partner suddenly storms out of the room. She yells loudly, clearly in the direction of 

Nímāmā‟s room. Nímāmā yells back from inside her room. I am stunned. My gentle and kind aunt 

has expressed a rage that I could never have imagined emanating from her weak body. Her fury 

scares me. The two of them exchange more words across the room. My cousin‟s partner storms 

out of the apartment. My aunt, lying in bed in her room, continues to yell after her. She eventually 

stops. There is silence. I hear my heart pound. Thump thump, thump thump… 



   

44 

Where is my cousin? He must still be in his room. I am afraid to go inside to check on him. 

I‟m afraid of the state that I will find him in. Nímāmā probably also needs her own space right now, 

I assure myself. I choose inaction. I choose to stay out in the living room, partly because I can‟t 

do anything else. My body is paralyzed. 

On the television, the camera is focused on the ball in Times Square. It begins to drift 

ever downward. The crowd counts down, “…four, three, two, one…” Then cheers, fireworks, 

confetti everywhere. The New Year song, Auld Lang Syne.  

And then, I hear another sound. A sob. No, a weep, coming from Nímāmā‟s room. Her 

weeping becomes a shrilling wail. It is deafening to my psyche. I am overcome by it. I begin to 

shiver. I shiver in despair, a despair that penetrates to my emotional core. 

All I can hear now is my aunt Nímāmā, her wail from her bedroom. In the background is 

the sound of the millions of revellers in Times Square singing in unison. I hear them both now.  

“♪♪ Should old acquaintance be forgot, and never brought to mind? Should old 

acquaintance be forgot, and old lang syne?” (English translation; Burns, 1788). 

Happy 2005. 

3.1.11 Evolving questions. 

These events have been etched permanently in my mind and have left lasting impressions. 

In those moments of tension, despair and suffering, I felt frustrated with myself because I did not 

know what I could say or do to relieve my aunt‟s emotional pain. I was paralyzed, with neither 

the direction nor wherewithal to make the situation better. I could only watch. I realized how 

unprepared I was to take on this immense and complex role of care provider. Looking back today, 

I feel a heavy regret. I often reflect on how it could have been different, how I could have been 

more useful.  

From these preoccupations arose my interest in understanding the experience of minority 

populations living with cancer. When the time came to proposing a research topic at the 

beginning of my studies in Counselling Psychology, I felt compelled to formally explore these 

http://www.youtube.com/watch?v=acxnmaVTlZA


   

45 

interests further. What resulted was a research proposal entitled, “Understanding the 

psychosocial experiences of cancer patients of Chinese ethnicity in the British Columbian cancer 

care system”.
25

 I recognized that often, despite providing the best that modern medical care can 

offer, health care providers may overlook or be mistaken by what is truly important for the 

patient. This was the case for Nímāmā, whose cultural identity had created a divide between her 

and her son. The tensions that filled this gap became magnified by the illness to the point that her 

psychosocial distresses had a larger impact on her overall wellbeing than any medical 

intervention ever could. I have learned that it is therefore paramount for HCPs to attend to not 

only the medical but also the psychosocial experiences of their patients and significant others in 

providing the most effective care possible.  

My research question evolved over time in parallel to my own introspection of my 

cultural identity. Although I am living in a city that surrounded me with people of Chinese 

ethnicity, I felt in large part different from those around me. I had after all grown up on the east 

coast of Canada in a small town. I could count on one hand the number of visible minorities in 

my elementary school. My upbringing was therefore very prominently grounded in an English 

speaking, European influenced community. Here in a multiethnic city like Vancouver, I 

encounter people who are often struck by how Anglicized I appear or how accent-free my oral 

English is. 

I quickly became aware that, in spite of my shared ethnic background and skin colour 

with other people of Chinese ethnicity, my experiences have led to a very different life than 

others here in Vancouver. Moreover, with increased interaction with people of Chinese ethnicity 

in Vancouver, I became more appreciative of the tremendous range of people‟s background, 

                                                

25
 See Appendix A: Initial Research Proposal. 



   

46 

experiences and in turn cultural identity. The ethnic Chinese population consisted of 

international students as well as students born in Canada to Chinese parents, newly arrived 

immigrants as well as those who have lived in Canada for many years or generations. There are 

also students who are in Canada merely to study and those who hope to stay permanently.  

Given the primacy placed in research on defining one‟s population of study and construct 

homogeneity, I was challenged to either define more precisely the construct “people of Chinese 

ethnicity” or abandon it altogether. Abandoning “Chinese ethnicity” became increasingly 

appealing as I reviewed the literature. My search for relevant literature uncovered cross-cultural 

studies comparing ethnicities (Ahn et al., 2006) or exploring the experience of Asian breast 

cancer patients (Ashing, Padilla, Tejero, & Kagawa-Singer, 2003). Study after study used this 

ethno-racial discourse in such a way that became the norm of the literature. I identify this as 

originating from our colonial routes where it was always about distinguishing between us and 

them. I became disenchanted by these studies. In reading through them highlight ing points that 

seemed important, I was often left wondering whether their findings were attributed to this 

loosely defined “Chinese ethnicity” construct or whether it was just a reflection of our comfort as 

researchers to categorize and formulate heuristics. Many study findings could have been 

summarized in the general form of “people of ethnicity X do A, while people of ethnicity Y do 

B.” These considerations again brought me back to my earlier recognition of the diversity 

amongst members of a given ethnic community. It made increasing sense to abandon an 

exploration of “cancer patients of Chinese ethnicity”.
26

  

                                                

26
 Admittedly, such an abandonment of an ethnic framework also comes at a cost. As noted, the ethnic 

framework predominates within academic and research community. My inquiry about immigrants may lose 

relevance to some members of this community by not using familiar terms such as Chinese and Asian. This is 



   

47 

My attention turned to the experience of immigrants as I asked myself, how are the 

experiences of Chinese patients any different from Canadian patients? In many ways, the 

experience of cancer for any two people may be vastly similar. The confrontation with a life-

threatening illness and with the possibility of death, the challenges with family and friends, the 

seeking of support, the coping with the side effects of treatment are themes that exist regardless 

of ethnic background or cancer type (Carlson et al., 2004; Centers for Disease Control and 

Prevention, 2004). At the same time, Chinese cancer patients and more specifically immigrants 

are moving from one social context to another. This transition might entail learning a new 

language, negotiating foreign social institutions, reconciling different values and beliefs, or 

adapting to a new political system. These differences underscore a profound cultural transition 

that is arguably fraught with challenges that are not experienced by Canadian cancer patients. In 

reflecting on Nímāmā‟s life, I realized that it was this added transitional experience that I wanted 

to explore in formulating my initial research inquiry, “Understanding the psychosocial 

experiences of cancer patients of Chinese ethnicity in the British Columbian cancer care system.” 

As a result, my evolving research question replaced the reductionistic and falsely 

quantifiable notion of “ethnicity” with immigrant. Rather than using constructs that are situated 

in a geopolitical framework, I began to speak about experiences and about culture
27

. At the end 

of the day, it is this framework that I feel more comfortable scaffolding my findings onto than 

constructs such as Chinese ethnicity. 

                                                                                                                                                       

evident in considering the larger number of hits returned on scholarly search engines when using ethnic search terms 

compared to “immigrant”.  

27
 It should be noted that the construct “culture” in this document is defined very differently than ethnicity. Refer to 

Chapter 1.4 for a more extensive discussion about my understanding of culture. 



   

48 

In following this line of thought, I became interested in young adulthood as it also 

represented a transitional experience that can be fraught with challenges. My own confusing and 

turbulent experiences through my teenage and university years reinforced this view.  

In reviewing the psychosocial oncology literature in the area of young adults, I quickly 

realized that this is a population that is marginalized in cancer care (Adolescent and Young Adult 

Oncology Progress Review Group, 2006). Young adults seek services in an institution that is 

geared largely to a patient population that is much older. At the same time, their age and 

developmental maturity makes paediatric cancer services inappropriate for them. These 

anecdotes are reflected in the substantial health disparities that exist amongst the young adult 

cancer population. Since the 1970s, 5-year survival rates have dramatically improved for 

children and for older adults aged 40 and above, while remaining relatively unchanged for young 

adults (Bleyer & Barr, 2006). They are referred to by some as the “forgotten generation” (K. 

Chalifour, personal communication, November 26, 2010). 

Interestingly, I believe that at the intersection of my own immigrant and young adult 

cultures, my experiences were different than if I had been older or born into a non-immigrant 

family. In the case of Nímāmā, there was an implicit and culturally imbued expectation for me to 

take on the care giving role. More generally, I grew up taking on a number of heavy adultly 

responsibilities by virtue of being the cultural interpreter and guide in my immigrant family. I 

have discovered this to be a salient theme amongst other immigrant young adults (Bacallao & 

Smokowski, 2007).  

3.1.12 Hope renewed and yet hope lost. 

Three months and a series of embittering struggles after I submitted the first iteration of 

my ethics application, I received the email from BREB approving my project. Finally! I could 



   

49 

begin with recruitment. It was a boost of adrenaline to my project. I felt momentum again. I was 

ever hopeful that I could still catch up with the particular timeline that I had set out for myself. 

Two months for recruitment and participant observations over the summer, a few weeks for data 

analysis and a few more for writing. If I put in some hard effort, I could graduate in November.  

Like my hopes for an efficient ethics review process however, this plan also collapsed. 

Weeks went by without a single inquiry. It became a test of patience. 

I contacted numerous institutional gatekeepers within and outside the cancer agency. My 

contacts snowballed through colleagues, and then colleagues of colleagues. I presented my study 

at nurse and counselling team meetings, to local not-for-profit agencies, to organizations in other 

regions of Canada I discovered on the internet. In spite of these efforts and the many institutional 

gatekeepers that I managed to gain support in recruitment, only three immigrant young adult 

with cancer made inquiries of which only one was eligible to and interested in participating. The 

momentum from a successful ethics application quickly dissipated.  

Journal Entry 2011-03-01 

Why has this process been so difficult? Was there something that I could have done 

differently in recruitment? I‟ve been reflecting on these questions with colleagues and HCPs. It 

seems that many who engage in research with immigrants or ethnic minority groups experience 

these challenges.
28

  

Maybe, as the volunteer coordinator at the cancer agency speculated, models of 

volunteerism don‟t readily exist in some parts of the world. So, the practice of doing work without 

pay or tangible remuneration would be culturally foreign for some. As a parallel, I wonder to what 

                                                

28
 The challenge of engaging immigrants and visible minority groups came up several times, including in 

my conversations with a number of researchers at the 2011 National Multicultural Conference and Summit.  



   

50 

degree the concept of research participation is localized to certain portions of our society or 

socio-economic or educational class.  

This prompts me think about how volunteering has served my own life. I volunteered in 

hospitals and not-for-profit organizations extensively in my adolescence as a way of 

demonstrating capability or willingness to paying employers and admissions committees. I 

volunteered in undergraduate psychology courses to gain extra credit. It occurs to me that even 

though I did not get paid for this time, volunteering was nevertheless commodified in these cases. 

At this point in my life, I volunteer as a sort of self-righteous social obligation that arises out of my 

privileged circumstances.
29

 

Now conversely, if I were to ask my parents, they would probably say that they have 

never volunteered before, and yet they have readily offered to cook lunch for church, help a 

family member move and arranged a meeting or connection for a friend of a friend. They haven‟t 

volunteered as this institutional culture that I belong to might define it – with an organization, 

guided by a defined role description and at a regular interval – and yet they have supported 

friends and family without tangible remuneration in times of need. 

                                                

29
 I recently attended a workshop where I explore the concepts of privilege and oppression. I completed a 

very disarming exercise that gave me an opportunity to examine my own privileges. This exercise and its 

accompanying reflection are included as Appendix E: Journal Entry: Privilege and Responsibility.  



   

51 

I wonder how someone might react to my recruitment flyer if they had not grown up 

exposed to my commodified model of volunteering. Maybe, it sounds something like, “Look at all 

these flyers. Why would I ever want to call up these people? I don‟t even know them.” 

Weeks turned into months. Planned deadlines came and gone without noticeable 

progress.  My research question, “What are the psychosocial experiences of immigrant young 

adults with cancer?” could not be validly answered with a sample of one. I was desperate for 

progress. Marla suggested I explore the possibility of adopting an autoethnographic approach, 

turning the research lens on myself. My first reaction was a sense of uneasiness. I had 

constructed my entire inquiry around an ethnographic methodology, with an in-depth exploration 

of the experience of patients and their care providers. What would it mean to just turn the lens on 

myself because I did not have enough data? Was this even legitimate? Even if it was, what would 

my research question be?  

My fears were in large part pragmatic but at the same time, I felt a sense of loss at the 

thought of this change. In recognizing all the work that came before this point and the prospect 

of having to start all over again was heartbreaking. I recalled how, in my defended research 

proposal, I boldly emphasized that the ethnographic approach is an “emergent research design 

that is responsive to ever-changing circumstances and the demands of the study and its 

Image 2. Personal photo of a bulletin board at the cancer agency. 



   

52 

participants”. Now that I confronted this possibility though, I felt timidly cautious, even 

paralyzed. 

I acknowledged to Marla that I would look into autoethnography more. From what little I 

knew about the methodology, my outlook was poor. I knew that it essentially is about a 

researcher writing about herself or himself. I thought back to an early encounter with a professor 

during the first few weeks of my program.  

He taught a different discipline of psychology in a faculty separate from counselling 

psychology. I was putting together a scholarship application for a national-level competition. I 

sought out his feedback on my research proposal because he had overlapping research interests. 

My timidity as a new graduate student suffering all sorts of identity issues was compounded by 

my discovery of his published textbook on Amazon. I felt diminished in his presence as I handed 

him my very rough proposal.  

He read it over, suggested amongst other things that I mention in my methods section the 

use of a qualitative data analysis software package. He went on to recount quite disparagingly 

about how he had once served as an external committee member for a counselling psychology 

dissertation defence. The student had apparently used an autoethnographic approach, spent 

some time living with people and just wrote about the experience. During the committee‟s 

deliberation, he had offered some strong dissenting views about the legitimacy of the work but to 

his great outrage, the student was passed. I remember feeling confused, perhaps equally 

outraged if my name would have been associated with the project. How could such storytelling 

pass as legitimate research at an esteemed intuition?  

I reflected on this early encounter as I walked home from my meeting with Marla, head 

hanging low, demoralized, without much hope in my thesis ever getting completed.  

Journal Entry 2010-10-26 

Graduating with an MEd does not sound all that bad.  



   

53 

3.1.13 Turning inward. 

My research into autoethnography brought me to the writings of distinguished scholars 

such as Ruth Behar, Authur Bochner and Carolyn Ellis. At first, I reactively dismissed these 

works as plain fiction or personal journaling meant to entertain, not scholarly works that inform. 

The accounts seemed all too intimate, too transparent, too biased. The author was everywhere in 

the text. As much as I tried to bracket out the author‟s presence to get at the cleaner, more 

objective truth, it was impossible to remove them from the account. I constantly referred back to 

my preconceptions about what research is suppose to look like and found these contaminated 

writings to be insignificant or invalid.  

There came, however, a turning point to these critiques. It came from a book entitled, 

“Communication as...: Perspectives on Theory”, a rather dense compilation of essays on how 

communication can come in various forms. Bochner and Ellis (2006) authored their essay on 

Communication as Autoethnography. What initially struck me was how it looked nothing like 

any of the other essays. It looked like the script of a play. In fact, Bochner and Ellis quite 

cheekily recorded one of their morning dialogues over breakfast and transcribed it into a 

description on communication theory. I was impressed with how plainly and clearly their piece 

discussed complex ideas about autoethnography. Their very real dialogue invited readers into 

their morning discussion at their lakeside cottage over pancakes and blueberries. As I finished 

this, I looked back to some of the other essays. I was able to get no more than two or three 

paragraphs into those essays before I got exhausted by the complex language and concepts. I was 

stunned. 

I returned to some of the writings I had previously reviewed (and dismissed) with a fresh 

lens. Without the taint of my own rigid preconceptions, I found truths of human experience. The 



   

54 

prose were simple and relatable. There was an intimacy conveyed in the narratives that the 

empirical studies and theoretical discussions I had previously read did not possess.  

As I came to recognize the value of these writings in conveying truth about human 

experience, I began to reflect on the many other forms of communication that have the evocative 

and deeply intimate elements of autoethnography. Movies, documentaries, literary works of 

fiction, theatre. Some great works that came to mind immediately were Danny Boyle‟s movie 

“127 Hours” (2010), Michael Moore‟s documentary “Bowling for Columbine” (2002) and Lance 

Armstrong‟s account of his cancer journey (Armstrong & Jenkins, 2000). All are to me powerful 

and therefore effective ways of communicating truth about our human experience. 

Journal Entry 2011-01-08 

Why autoethnography as a method of research? Watching the movie 127 Hours last 

night, I began to reflect on the power of personal narratives to convey a message. In this case, 

the message is made up of my experiences, the research findings. The movie chronicles the 

harrowing real life story of a free-willed, I-can-do-it-on-my-own hiker who becomes trapped for 

127 hours in a desert canyon with his arm pinned under a large boulder. He experiences 

desperation, sadness, revelation and peace. He is eventually forced to cut off of his own arm in 

order to free himself. It struck me how even without ever having been placed in such a 

circumstance, aspects of the individual‟s narrative deeply resonated with me. I felt each moment 

of his desperation, celebration, anger and resolve. One of the most poignant scenes for me was 

when he shouted for help, at first going through the motions but without a voice and then finding it. 

It became a transformative moment for the protagonist, going from a person who never sought 

help and could forever be self-reliant, to someone who needed help and in fact wanted help. He 

was able to let down his guard. There is some essence of the human spirit that is captured by this 

story, this very intimate and personal narrative, and despite my very different location life, I have 

been affected by it, been changed as a result of it. Is that not the purpose of this research 



   

55 

enterprise? To uncover some truth about our human existence and perhaps use it to better 

govern our future actions or the way we perceive the world? 

As I read more about the breadth of autoethnographic topics – living with a life-altering 

disability (Murphy, 1990), ascending the ranks of academia as a woman (Chang, 2008), being a 

professional poker player (Hayano, 1982) – I became increasingly aware and discouraged that 

my own story did not fit my research inquiry. I could not pretend to know what it is like to have 

cancer. From my limited experience with patients and their care providers, I could not even 

extrapolate what their psychosocial experiences may be. I did not have what Anderson (2006) 

refers to as “complete member researcher status”. 

For a long time, I ruminated over Anderson‟s criterion of complete member researcher 

status. I was not a member of the culture that I endeavoured to study and therefore did not have 

the ethnographic immersion or expertise to talk about cancer. I wondered then if I had any 

expertise at all? I referred to my culture-gram
30

, desperately trying to find some aspect of my 

cultural identity that I could link to this inquiry.  

Journal Entry 2011-11-25 

Here‟s a thought. I am a health care provider aren‟t I? Well, I‟m getting there at least. I‟m 

working on my degree, more than three years in. I‟ve worked with a number of different clients, 

albeit none of them had cancer. But once I graduate, I could see myself working in cancer care. 

That would be a great job actually. I would get such fulfillment in supporting patients and their 

loved ones, bringing family members closer during the most precious moments in life. So, I may 

not be a health care provider now but I will be. So that‟s the cultural membership that I have 

through this journey. I‟m a health care provider to be. I‟m learning to be one.  

                                                

30
 Refer to Appendix D: Culture-gram. 



   

56 

The realization fills me with a great thrill, a sense of empowerment. Yeah, that‟s what I‟m 

an expert of. I‟m an expert of my own journey as a learner. Wouldn‟t there be so many people 

who would be interested in this sort of journey? Sure. I‟m sure everybody goes through this 

experience of wondering about what their role is, where they fit in. 

The idea of “my journey learning to be a HCP” ferments inside me for the subsequent 

weeks as my research inquiry continued evolving. 

Email 2010-12-05 

This autobiographic account would require revising the research question to fit. Maybe 

something like “My learning as a care provider for immigrant young adults with cancer.” I‟ll consult 

with some folks who may be more familiar with the method and constructing such research 

questions. 

Email 2010-12-16 

At the moment, my working title is “My journey as an emergent health care provider for 

immigrants with cancer”. […] As a result of this shift, I‟ve thought about how my inquiry would also 

have to shift. Rather than presenting the experience of IYA with cancer (which I can‟t credibly do 

with the data I have), I‟ve been reflecting more on the personal experience of HCPs in providing 

care to IYA. This has also shaped my discussions with HCPs, so it‟s been less about what they 

think are the experiences of IYA but more about their own experiences in treating them (if that 

makes sense), which ultimately, I intend to inform my experience as a HCP. 

Email 2011-01-11 

I formulated a tentative research question to guide data analysis and interpretation: “How 

do I come to understand my role as an emergent health care provider to immigrants and young 

adults with cancer?” […] It still doesn‟t sound quite right to me as my inquiry also includes a 

“WHAT is my role” question in addition to HOW.  

Both of these questions – “What is my role?” and “How do I come to understand my 

role?” – seem worth exploring and yet I recognized that they are vastly different. To explore 



   

57 

what my role is appears to be a necessarily personal inquiry. Whatever conclusion I come to 

about my role would apply to myself only given my unique circumstances and cultural location 

in life. Others who have different cultural locations – perhaps in speaking different languages, 

possessing different skill sets – will have different responses. Although I report on my 

conclusions about the “what” question in this thesis, I would be remiss to suggest that this reality 

applies to others. 

On the other hand, the process-oriented “how” question seems to relate to a rather public 

experience. As such, this question would seem to yield the answers that will be most valuable to 

readers. Every individual who aspires to work in the health care field would presumably 

undertake a journey to figure out where they belong. I would hope then that the process of how I 

have navigated my own journey will be helpful to readers. I report on the “how” question 

towards the end of this thesis.  

As I became increasingly convinced about the appropriateness of my research inquiry and 

methodology, the overall picture started coming together. Suddenly the smorgasbord of data that 

I had collected up to that point – including interviews, textual artefacts, photos, observations and 

reflections – began to communicate a coherent narrative. That narrative revolved around the 

discovery of my role as an emerging health care provider. I jumped into the data analysis with a 

new found clarity and confidence.  

3.2 Roles, Masks and this Divide Between Us 

Handle With Care? (Gray, 2000) 

Scene One (at 19 minutes, 50 seconds) 

Woman:  I can‟t believe we‟re actually going! 

Man:  A cruise of the Hawaiian Islands!  



   

58 

Woman:  I know. Pinch me. It‟s like I‟m dreaming! 

Man:  You‟ll wake up with a Visa bill… 

Woman:  Oh yeah, but until then. Three weeks. Sun, sea, sand, paradise!  

Grace:  Hi guys. 

Woman: Hi!... Grace… (a look of surprise, speechless) 

Man:  How are you?! 

Woman:  Grace, I have been thinking so much about you lately! 

 (with forced sincerity) 

Grace:  (pauses, uncertain how to respond) 

Woman:  I‟ve been meaning to call but we‟ve just been really busy.  

Grace:  (smiles forcefully, shrugs comment off) 

Woman:  But we‟ve been really busy… 

Man:  […] 

Woman:  (jumps in quickly, speaks over man) … The usual... 

Grace:  Anything new? 

Woman:  (whimsically) This and that.  

Grace:  Everything‟s the same? (more as a saddened conclusion than a question) 

Woman:  Pretty much. 

Man:  Yeah. Nothing special. 

Grace:  (turning away, head down) 

 

 

 

 

 

Scene Two 

Woman 1: (miserable, wailing) Oh! My shoulder! I hurt it playing tennis yesterday. I can‟t do 

anything anymore. Sleep… 



   

59 

Woman 2:  (miserable) Oh, never mind your shoulder. You should have my back. My back is 

killing me. I guess if I exercised… 

Woman 1:  Oh back shmack… 

Woman 2:  I guess if I exercised… 

Woman 1:  Oh so boring. 

Woman 2:  Yes, so boring. I know. 

Grace:  (suddenly entering) Hi girls. 

Woman 1 and 2: Oh hi Grace! (surprised) 

Woman 2:  (cheerfully) Oh I‟ve been meaning to call you but I 

didn‟t want to bother you. 

Woman 1:  (reaching for Grace‟s hand, patting it) Oh you‟re 

looking good Grace. How are you holding up? 

Grace:  Well, as well as can be expected, but there‟s some days when I… 

Woman 2:  (interrupting, extravagantly) Oh Grace. That‟s what 

I‟ve always loved about you. You‟re so positive. 

(Turning to woman 1, smiling widely) Isn‟t she 

positive? She‟s so positive. 

Grace: I haven‟t seen you girls for a while. How‟s your back? 

Woman 2:  (dismissively) Oh, fine. No problem. 

Grace:  Any pain? 

Woman 2:  Oh no. 

Grace:  Oh isn‟t that wonderful. And how‟s your tennis game? 

Woman 1:  (agreeably, smiling forcefully) Great thanks!  

Grace:  Playing well? 

Woman 1:  Just terrific! 

Grace:  Well that‟s really good (uncertainty in voice). 

 



   

60 

I came across this theatrical production as part of my Interprofessional Psychosocial 

Oncology course. Watching Grace desperately want to participate in her friend‟s joys and 

frustrations and being shut out was heartrending. I wanted to just reach out to her, to help 

alleviate the loneliness that she felt. I was angry at her friends for abandoning her, for treating 

her like a stranger. She is still the same Grace that you knew before her diagnosis. I wanted to 

scream for her. 

Grace is not alone in her experience of loneliness. In fact, this strangeness and distance 

between people as a result of the experience of cancer is pervasive (Rosenthal, 2009). It takes on 

many forms and occurs between many people. Through these months of research, I have 

witnessed this strangeness within many interactions amongst those experiencing cancer. As a 

mere witness to these interactions, I feel saddened, outraged and helpless. I condemn those who 

act to isolate, to distant, especially during these moments of greatest vulnerability and need.  

As a witness, I want to fault so many and yet, in becoming a participant in these 

encounters, I discovered my own hypocrisy. As a volunteer and researcher, I found myself 

paralyzed by fear and uncertainty, which in turn expanded the divide between me and the people 

I was caring for. These moments were sobering. I also recognized that there are certain 

contextual factors that make possible this interpersonal divide and in turn cause isolation. In this 

chapter, I explore these sobering moments as well as attempt to identify the factors that give rise 

to my role, these masks and the divide between us. 

3.2.1 Handling others with care. 

“Handle with care.” The phrase brings to mind the image of a delicate museum relic, 

placed on a cushioned platform for protection and cordoned off from interaction behind glass for 

fear of breakage. There is a certain beauty to the relic, a mystique, an exoticism that I am 



   

61 

intrigued and allured by. At the same time, I fear it. I fear its strangeness, its other-ness. I recoil 

from it and choose to observe it at a distance.  

I am reminded of the day that I first had this experience of handling patients with care. It 

was my first volunteer shift at the cancer agency. 

Field notes 2010-06-10 

Putting on my vest, I notice my heightened anxiety. This is a foreign environment, don‟t 

know what to do. The experienced volunteer who is supposed to train me is late. I get excited. 

Maybe I can leave. It‟s an avoidance response. I‟m so nervous that I just want to avoid this new 

role. I‟m worried I‟ll mess up. I feel pressure to do well. He arrives. I‟m annoyed, partly because of 

his lateness and partly because I‟ll no longer have an excuse to go home. 

I follow my trainer back to the main lobby, ride up the elevator to the sixth floor. I have so 

many questions. The ward seems so surreal. There is a large waiting room where patients wait 

for their attending nurses to call on them. It comfortably seats about 15 people. After getting 

called, the patient follows their nurse into a go into a room that can have as many as three others 

and receive chemo. (Life-changing, life-giving and life-killing of tumour cells all at the same time. 

Funny in a way.) 

There‟s something so unsettling, scary about being here in the chemotherapy ward. Feel 

so hesitant, apprehensive, reluctant in approaching patients, in entering their rooms for fear of 

intruding upon their personal space. I feel this way even for something as innocent as peering 

into a room to see if there are any new arrivals, so I can go in to offer tea and coffee. Even that 

feels intrusive. I feel disgusted. It‟s like I‟m being a voyeur, an audience in some twisted spectacle. 

The patients are the performers, sitting in the room for display, to entertain. I feel so awful in what 

I‟m doing, despite the goodness of it on the surface of offering something kind, some 

conversations, some warm beverages to make them feel comfortable. 

I try to make small talk with my volunteer trainer to present a cool, calm and collected 

image. As I follow him, observing how he approaches and engages the patients, my mind is on 

overdrive, considering the many possible implications of his every action and response.  



   

62 

He tells me to relax. Don‟t think too much. (I‟m annoyed. Who are you to tell me how to 

feel? Why is being a bit careful a bad thing? Shouldn‟t we be aware of how our actions affect 

patients? My annoyance goes away. I realize that I am being too careful. I am treating these 

patients so carefully, with such sensitivity and protectiveness that I‟m not respecting their ability to 

take it. To take my entering into their space, to take my looking into their rooms from out in the 

hallways, to take my happiness or insistence on happy days. That somehow, they are so 

vulnerable in their circumstances that they can‟t bear anything. But that‟s not helpful. If I was a 

patient, I know that I wouldn‟t want to feel condemned by my care providers. That would infuriate 

me, to be dismissed before I was ready to be dismissed. I wonder if that‟s the case for them. 

When people are overly kind or overly sensitive, I wonder if patients feel trapped or backed into a 

corner or condemned to die.) 

Later on in the year, when I switched from an outpatient role to an inpatient role, all the 

same doubts and anxieties re-emerged. 

Field Notes 2010-09-16 

While eating at lunch, I acknowledge my apprehension about this new role. How do I 

connect and engage with patients. I feel nakedly unprepared, without any introductions to the 

staff as the volunteer coordinator had initially mentioned. I feel reluctant to approach the nurses 

as they are engaged in conversations. I have no idea who is who. Who do I talk to about what? 

As I walk along the hallways, nervously peaking into the rooms for people to engage, I 

notice many patients with their eyes closed. Some are asleep, others, merely resting their eyes. 

Some have headphones on, some curtains drawn around their bed. I perceive their space closed 

to me, as if I am a canvasser going door to door, a “Beware of dogs” or “No trespassing” signs 

mounted on their front lawn.  

I feel lost, not sure whose room I am permitted to enter. I notice a sign hung on a door to 

a room at the end of the hall. “Radium Implant Ward,” it‟s labelled. “Visitors please visit nurse 

station before entering” and “Restricting visits”. (I have the vision of a horror movie, an unknown 

evil residing behind the door to which no-one knows.) […] 



   

63 

I engage in a conversation with a patient. I am left wondering if he was entertaining me or 

I him. I feel relief at my presence. Did he really feel relieved as a result of my presence? I feel 

clumsy at this, incompetent. I feel frustrated with myself and with the lack of clear direction.  

I really struggled in trying to establish meaningful connections with patients. In spite of 

my best intentions, my fears and uncertainties have often gotten in the way. It saddens me to 

think that if I, as an individual who works on developing meaningful relationships for a living, 

struggle with such tasks, how many other family members, friends and hospital staff also 

struggle. We want to connect with our loved one or patient but we fear impacting, hurting them 

or breaking them; and so we stay away. We withdraw because we care to not hurt. We suspend 

our own contentment or frustrations for fear of how they may impact our loved ones.  

These struggles of ours certainly do not go unnoticed by those we care for. “I don‟t know 

if he is scared about something” said one immigrant young adult with cancer about his father 

who doesn‟t ask about his emotional experiences in cancer. For this young adult, this leaves him 

feeling distant from his father. He expressed confusion. “I don‟t know if he doesn‟t want to 

know… He want to know, but he want to know through my mom. He doesn‟t want to know 

through me.” 

Another young adult expressed similar confusions in her journal about the state of the 

significant relationships in her life. 

 

Image 3. Excerpt from diary of a young woman with cancer. 

Her confusions cause her to feel uncared for by the significant supporters in her life. She 

begins to resent them. 



   

64 

 

Image 4. Excerpt from diary of a young woman with cancer. 

As we wrestle with our fears and uncertainties, our loved ones or patients will 

reciprocally have reactions. As the two young adult noted, they felt their loved ones backing 

away and in turn, they did likewise. The divide between us grows rather than closes, in spite of 

our best intentions. 

3.2.2 My critical voice. 

At this moment, I find myself thinking about my own actions in taking care of Nímāmā. I 

think about my concerns with having left a fun and festive Christmas holiday season, my 

resentment in feeling obliged to do so rather than as my own feeling choice, my frustration in 

being physically confined to a hospital room. As I reflect on my actions, I am confronted by the 

painful conclusion that I tried to distance myself from those responsibilities and as a 

consequence, distanced myself from her. Instead of coming into her life as a family member and 

support during her moment of greatest need, I turned from her. I betrayed her. I feel like a sleep 

walker who awakens to find blood on my hands. My heart is beating heavily. I want to scream in 



   

65 

anger, in self-loathing. I have become the very person that I despise the most, the one whose self-

centeredness and narcissism clouds all other considerations. 

I try to still my thoughts and my body. I take a deep breath. Another. I am being far too 

critical of myself. Nímāmā would not agree. She would have expressed appreciation for my 

presence, my support.  

“And yet she did not know your intentions, your yearning to be elsewhere.” 

But this was reactionary. I had left my selfishness behind. 

“But you had these selfish desires nonetheless. If you had the choice, you would have 

been at home, celebrating the holidays with your friends and playing mindless video games.” 

Yes I did and I would have, but I did not. My selfishness will always be a part of me, but 

it is not the only part of me. My cultural identity is composed of many cultures and as such, I 

choose what value systems I affiliate with at any given moment.  

This critical voice. I know it well. It is born out from the cultural value system that I have 

grown up with; the perpetual dissatisfaction with present circumstances, the unrelenting pursuit 

of improvement. I almost hear the messages being spoken in my ear. It is the voice of my mother. 

It is heartening and inspiring. It has pushed me to where I am today, and yet in the same breath, 

it crushes me, reduces me in stature during moments such as these. I can at times feel diminished, 

even inadequate, but I must remind myself that this is not the entirety of me.  

Another deep breath.  

3.2.3 Drifting apart.  

As I reflect on some of the significant relationships in the life of individuals with cancer, 

I imagine the pain of being distant from a mother, a partner or a sibling. I remember a poignant 

vignette of a young adult with cancer.  



   

66 

Field Notes 2010-10-06 

She has been forced to move back home because of her diagnosis. She is sitting in her 

room, in front of her vanity mirror. The person she sees staring back at her is a stranger, nothing 

like her. There is a knock on the door. It is her mom checking in on her, telling her that it is time to 

come down for dinner. She says that she does not feel hungry. Her mother insists that she needs 

to eat to stay strong. She insists otherwise. A momentary expression of frustration. Having 

achieved self-sufficiency and moved out on her own, she has now been forced to return to the 

watchful eyes and control of her mom. She resents her mom for limiting of her independence, her 

self-determination. Her phone vibrates. It is a text message from her friend. An invitation to a 

party. She wants to go. It is her way of maintaining some sort of normalcy in this now abnormal 

life. She calls out to her mom to tell her that she is heading out. A prying response of where and 

what about dinner. She insists she can pick up something while out. Her mother reminds her that 

dinner has been especially prepared and that it was decided to be family night tonight. She 

engulfs a loud and deep breath of exasperation and defeat. She looks back to her mirror, still 

seeing the stranger staring back at her. In an explosion of anger, she throws her cell phone to the 

ground and breaks down in tears. 

In a journal entry, she also wrote of her experience of the unravelling of her relationship 

with her boyfriend. 



   

67 

 

Image 5. Excerpt from diary of a young woman with cancer. 

It saddens me to think about how suddenly such significant relationships can unravel and 

support systems become coldly distant. We try our best to care for our loved ones or patients and 

yet in doing so, we are rendered strange, and they, invisible. 

Handle With Care? (Gray, 2000) 

(Except from 21 minutes, 44 seconds) 

Ladies and gentlemen! Step right up and meet Magda the Magician. With a few magic 

words, I can make things disappear. I can even make myself disappear. Just a simple magic 

formula. Easier than abracadabra. Well I don‟t exactly disappear, but after I utter these magic 

words, a cloud will descend on you, and you will no longer see me. You don‟t believe me? Wait 

and see. I‟ve done it before for family and friends. It‟s sure fire, no fail. And what is this magic 



   

68 

formula you ask? Ready. Here goes… But first, take a good look at me, and remember what I 

look like.  

And now, the five magic words… I have metastatic breast cancer.  

So do you still see me, or has the magic cloud done its work. Some of you do? How 

unusual. The same me you saw before without the usual masks; the mask of the doomed woman, 

the mask of victim, the mask of indolent, the fighter.  

Where‟s the real me? The one who loves chocolate fudge and Robert Redford movies, 

the one who wants to play bridge and talk about your son‟s wedding, and hold my niece‟s new 

baby, the one who wants to share your joys and sorrows as much as she ever did. I wish I had a 

magic formula to bring that woman back from under the cloud and from behind the masks. If any 

of you know that one, please tell me. 

Hearing Magda‟s words send chills up my spine. I was moved by Magda‟s resonant 

description of the many masks that we wear to disguise ourselves and become strangers to each 

other. It seems crazy that we would inflict such cruelty on each other in the most precious 

moments of our lives, and yet we do. I do. I did in my relationship with Nímāmā. She wore her 

mask of togetherness and strength while I, well, I am not quite sure what mask I wore. 

Nevertheless, I always sensed the insurmountable divide between us. Maybe it was my young 

age, my younger generation. Maybe in her eyes I was still her eight year old nephew, the 

youngest of my generation, the one that everyone had to look out for. Maybe even in her 

weakened state, she still felt compelled to protect me from her pain. I can never know and yet 

somehow, whether she perceived me as her eight year old nephew or not, I colluded in the role, 

playing the part perfectly, confused, powerless and helpless. Why? It seems so senseless. 

Considered in this way, we did not inflict cruelty upon each other as though we had some 

intentionality in the process. The great tragedy seems to be that, in spite of all of our care and 

well-meaning, the masks appeared over our faces and we became distant strangers to each other.  



   

69 

Conversely, one counsellor alluded to how young adults she works with often refer to the 

idea of wearing a mask. The masks serve a valuable function for these individuals with cancer 

who often feel as though they exist in two different worlds; one containing their life with cancer 

and the other containing their normal life that they desperately cling onto. In each world, 

different masks are worn in order to conceal certain fears or pains so as to not stand out in their 

immediate context. All the while, the cost to them is that they lose themselves and their 

connection with others. When all that others see is the mask, the person behind the mask simply 

disappears.  

These descriptions eerily hit close to home for me. I am reminded of how similar this is 

to my own experiences growing up as an ethnic Chinese boy in a predominantly Caucasian 

community. I recall how my desperation to feel a sense of belonging drove me to wear masks. I 

have never had cancer. I have never even been seriously sick for an extended period of time, and 

yet I feel a loose sense of connection, of shared identity with young adults with cancer. I will 

never know what it is like to walk in their shoes but it feels vaguely comforting to think that, as a 

HCP, I can identify with them, even if only in the smallest of ways.  

I shudder to imagine how our loved ones could just disappear before our eyes. What 

comes to mind is the image of a great web of life, its fibres representing the connections between 

people. Cancer eats away at the fibres around supporting people until they are gone, leaving a 

vertex unsupported, alone and suspended in space. As I think about this image more, I realize 

how it is the very fibres that make up the vertices. Without the fibres, the vertex does not exist. It 

disappears from the world. What seems most tragic in this entire cascade of events is the 

seeming inevitability of it, that it is a natural entailment of the experience of cancer. It is hard to 

imagine people choosing to isolate themselves from their support systems and yet, it inevitably 



   

70 

occurs. As I think about this, I notice myself exhaling a deep breath filled with frustration, anger, 

sorrow and anguish. I feel it both for my connection with Nímāmā as well as the many other 

connections that suddenly dissolve.  

3.2.4 Struggling to find the balance. 

I am therefore saddened to see care providers distancing themselves from their loved 

ones or patients. As much as I try to avoid this pitfall of handling people with care, I constantly 

notice myself doing so.  

Field Notes 2010-06-17 

Prompted by an off-beat remark about his Hawaiian shirt, we start talking at length about 

past vacations to Hawaii. It‟s my first substantial conversation. Feeling quite nervous. I am aware 

of the way I am forcing the conversation, filling the occasional silences with my further questions. 

At the back of my mind, I recognize the gravity of the circumstances and know full well that this 

conversation may remind him of how such fun experiences will never be recreated again. Are any 

topics of conversation safe? 

Field Notes 2010-11-04 

As I talk with her, I notice the extravagance of my intonation, the effervescence, the 

emphasis. I know that it often happens in encounters with strangers or older adults. I feel dirty 

with this dishonesty. What compels me to adopt this mask of happiness? Why am I not my 

authentic self? 

 These excerpts describe moments in which I grappled with how best to relate to a patient 

and tried to find a balance. Be happy. No. Do not show happiness. Well… Maybe be somewhat 

engaging and exuberant. No, that does not feel right either. Over the weeks and months at the 

cancer agency, I experienced many of these moments of struggle and confusion.  

The first excerpt illustrates my obsession with limiting every little statement that might 

sound positive or happy. I did not want to disturb the patient, to remind them of more joyful 



   

71 

times in their lives that they may never be able to recreate. As the following journal entry shows, 

the continuance of life can be a painful reminder of how much life stagnates in the face of a life-

threatening illness. 

 

Image 6. Excerpt from diary of a young woman with cancer. 

I was therefore careful to not cause others the same pain. I was restrained in my display 

of positive emotions. I avoided greetings like “Good morning” and “Nice to see you again” while 

I was at the agency. I kicked myself for letting slip questions like “How are you today?” I even 

stopped referring to the outdoors as I would with “Boy, it‟s a beautiful day out.” I was constantly 

walking on egg shells during my time at the cancer agency, always on hyper alert about the 

words that I used. My intentions were well-meaning. I wanted to take great care to not cause 

further pain. This however came at the cost of my genuineness and warmth. I became calculated 

and overly cautious. My good intentions in practice amounted to an obsessive mission to not 

cause emotional response at all, positive or negative.  

Conversely, I postured myself at the other extreme. As the second excerpt shows, I 

adopted a cheerful and exuberant persona. I wanted to lift people out of their emotional lulls. 



   

72 

Circumstances are depressing enough at the agency that we should all make an effort to cheer 

people up. Two conversations prompted me to think about where a happy attitude fits into 

forming connections with people at the cancer agency.  

Field Notes 2010-09-02 

Three women arrive in the chemo waiting area. I can tell that the one who stands in the 

middle is the patient. She looks exhausted, fed up with the circumstances she finds herself. The 

women to either side of her try to engage her. They suggest looking at head coverings. She 

seems uninterested. They say that there‟s a box of them. I quickly hurry out of my seat and dig 

out the box of head coverings made by volunteers. The two supporters dig through the box, 

occasionally fishing one out and commenting on how its colour or design would go well with this 

and that. The patient follows along disinterestedly. The two do not seem to find anything 

satisfactory. “There are more downstairs,” I note. The two are heartened. Is there one that is a 

solid colour, preferably black made of cotton and with a brim, they request on behalf of the patient. 

I leave to check. 

I return to find just the two women. The patient has been called in. I sit down to one side 

of one and present the head covering that I managed to find. She receives it casually. I‟m 

surprised. Not with the enthusiasm that she‟d been expressing while digging through the box. Her 

tone is also less expressive, more subdued. They‟re sisters of the patient, both from out of 

province, she tells me. She‟s a former oncology nurse. Both feel responsible for constantly 

reminding their sister to stay positive. It is tough going these days. She sighs. I have no response. 

What could I possibly say to make the situation better?  

I notice the exhaustion in her now, exhaustion that she hid in the presence of her sister. I 

feel saddened in thinking about the masks that they must pretend to wear. I sit attentively, 

offering contemplative silence and a quiet place to rest. 

Field Notes 2010-12-23 

“I‟m not ready for Christmas,” says the hospital staff member as we sit in the lounge. I 

think he‟s worried but he doesn‟t appear so. He actually perceives it to be a good thing.  



   

73 

“Then, sounds like you are ready for Christmas,” I venture.  

“Not in the conventional sense of being ready with all the gifts bought and decorations 

hung.”  

“Oh!” 

The commercialization of Christmas, not what it‟s meant to be, he laments.  

“At least here, that is stripped away,” I point out. 

“People come here to live, not to die,” he declares. I‟m struck by simplicity and yet depth 

of his statement.  

“In working here, I‟ve learned to live each day.”  

It‟s a tough lesson to learn. 

“You‟ll never see me depressed. If you were to walk into a patient room wearing a frown, 

you‟d bring other people down.”  

I agree. “So it‟s part of the job description to wear a smile then?” I wonder. 

“You really have to maintain a bright face to work here.” 

I recognize the value of maintaining hope and a positive attitude in an environment when 

death is all around. And yet, I am tempered by the very realistic vignette of Grace and her friends. 

It was revolting to see Grace‟s friends cornering her into feeling positive and denying her 

circumstances. Where does maintaining a positive attitude cross over into self-delusion or denial 

of an individual‟s emotional existence? The answer to this question seems somewhat difficult to 

pin down in thinking about the number of different circumstances that may arise and the 

different needs or personalities of patients. These considerations add to my confusion around 

how I could most effectively establish meaningful connections with patients and their care 

providers.  

Regardless of where the balance lies in presenting a positive attitude though, I found 

myself for the most part trying to be more cheerful than I otherwise felt. My reasoning was that I 

was after all providing a service to people. I was providing companionship. Who would ever 



   

74 

want a volunteer that seems to have no energy or feelings? I therefore worked hard to come 

across as a pleasant person, as welcomed company to have around. My existence as a volunteer 

was validated by the contentment of patients and family members that I served. I was fed by their 

smiles. I was demoralized by their absence. I found myself feeling dejected in moments when 

there were fewer patients to serve or when they did not need me.
31

 

Field Notes 2010-08-19  

I go do my rounds. I serve a few teas and coffees uneventfully. 

Field Notes 2010-08-26 

I do my 3
rd

 round quickly. No takers. I grab a blanket at a nurse‟s request but that‟s it. 

Quiet. I feel sleepy, unengaged. 

Field Notes 2010-09-16 

For myself though, I felt relieved that someone actually wanted to engage today. 

Field Notes 2010-09-30 

I approach the nurses at the desk to ask if they know anyone who might be interested in 

a visit. “No” says the first nurse. I feel like I get bounced around to a number of nurses but no 

takers except one. Filled with excitement, I note the name, room and head off to check. Just my 

luck.  He‟s sleeping, food tray left untouched on a tray hovering over his chest. I‟m disappointed. 

[…] 

I get referred to another nurse on duty. No again. The “lady with the dog” had already 

come by. (I feel irritated, jealous, foiled again from being helpful, useful. I feel ashamed for trying 

to compete with the lady who does pet therapy. I don‟t want to be competing against her. I should 

be encouraged that there are so many forms of support and interaction here.) 

                                                

31
 As I re-write this experience for what must be the fourth time (and as a consequence, reinterpret it for a 

fourth time), I feel a sense of rightness. The puzzle pieces are finally fitting together properly. This is what my 

experience was. In each of my previous passes at this experience, I was just forcibly writing a narrative that made 

sense. Now, this interpretation makes sense to me. Now this narrative is one that I can own.  



   

75 

Field Notes 2010-10-07 

I head first to the nurse station. Expectations set low. […] She names a number of 

patients. I‟m delighted by the lists. 

Field Notes 2010-10-21 

She accepts my offer to sit with her. I‟m hugely surprised and relieved. […] 

She asks if I could look over her request letter. I do so. She thanks me. I leave feeling 

content that I was able to be useful to someone in need. I wish her well. I notice a warmth inside 

me. 

My cheerful and exuberant tone of voice and these reactions to offering help are all too 

familiar. They represent my desire to be helpful and therefore to be appreciated by others. There 

is much more to this desire than just simple helpfulness however. I trace my need for validation 

back to early childhood experiences of being a different looking kid in my elementary school. 

Being an outcast, I learned to develop personas that were appreciated by others. I put aside my 

own identity for those that others preferred. Over time, I became quite skilled in adopting the one 

that was best received by those around me. The cost of this was considerable as I have come to 

realize much later on in life. In being what I thought others wanted of me, I lost sight of who I 

was deep down. In not having presented myself to the significant people in my life, I realized 

that they really did not know me. In my attempt to satisfy what I thought my friends wanted of 

me, I lost them.  

It is probably for this reason that I react so aversively to when this extravagant, people-

pleasing side of me emerges. For me, it represents much more than just being superficial. When I 

become exuberant and put in more effort into my communication than I feel is honest, I am not 

only creating a divide between myself and those dearest to me. I am also denying my very 

existence. I am repulsed when I experience this in myself as well as in others. People who seem 

overly happy or expressive serve as strong triggers me. I do not trust them. I am unable to get to 



   

76 

know them. Their lack of authenticity keeps others at a distance. I can think of one very aversive 

encounter at the cancer agency that is imprinted into my memories.  

Field Notes 2010-12-24 

Another nurse enters the room. My attention is immediately drawn to the tone of her 

voice. It‟s bubbly, embellished, increased a few octaves to convey a sense of niceness. It‟s all 

that I can hear. She works quickly, adjusting an IV bag, checking a machine. The patient points 

out to her that he has a visitor. She responds with a cheerful, over the top “Oh, I see!” She makes 

a few other remarks but I am unable to pay attention to her words because all I can process now 

is her voice. 

Work done, she turns to leave. As she walks by me, she turns her head quickly towards 

me and with the most incongruent smile, superficial voice, eyes looking past me, she says, 

“Thank you!” Her overpowering aura hits me like a tidal wave, nearly knocking me over.  

The interaction is brief and yet so viscerally off-putting. I recognize how much it is 

filtered through my own lens of personal experiences. Moreover, I find myself feeling outraged 

on behalf her patient. Putting myself in the shoes of the patient, I cannot imagine how I could 

ever relate to or feel comfortable with this HCP. I would feel reluctant to display emotions that 

were not compatible with hers. Perhaps this is what bothered me the most. I am outraged that 

someone could act in such a way that robs another human being‟s very basic ability to express 

his or her feelings.  

My reactions, I admit, are excessively unforgiving. When I remind myself of my own 

cultural location, I feel compelled to temper my criticisms of this HCP. I come to experience this 

interaction as someone who practices counselling within the bounded confines of the therapeutic 

hour.
32

 Over the course of this hour, I try to create a space in which a client is able to be taken 

                                                

32
 The therapeutic hour refers to the traditional timeframe in which a counselling session is conducted. 



   

77 

through a therapeutic arc of establishing safety, exploring deeply and integrating newfound 

awareness. Within this model of counselling, “shallowness” would be reflected on and perhaps 

challenged.  

In contrast, most health professionals likely do not operate within this framework. 

Inpatient nurses play their helper role from the time they start their shift until the time they finish. 

They might occasionally find reprieve from their patients at the nurse‟s desk but that is very 

different from the physically and temporally distinct spaces that I am able to retreat to outside of 

the therapeutic hour. As such, the roles that nurses occupy seem to blend together much more. 

Perhaps in this work environment, they need to wear masks – the mask of the exuberant, positive 

or optimistic care provider – in order to carry on in their roles (Vahey, Aiken, Sloane, Clarke & 

Vargas, 2004). Irrespective of the function of masks however, I am disappointed that what 

results is a deep divide between the care providers and those they care for, an observation that is 

acknowledged by others (Kuhl, 2005). 

3.2.5 Our cultural context and the divide between us. 

Up to this point, I have spent a significant amount of time examining how my actions as a 

HCP and those of the patient may create an interpersonal divide. Taking a step back, I have also 

noticed how our circumstances, independent of our actions, may also play a significant role.  

Field Notes 2010-12-16 

As we converse, a pharmacist walks in. I remark how instantly her talk changes from our 

everyday discussions that are far removed from medical conditions to a pharmacist interviewing 

her about her ailments and drug reactions. The transition is sudden, abrupt and yet so seamless, 

as though it is the most natural thing in the world. […] 

Another visitor. Her oncologist. He is older, pleasant in mannerism, dressed in red 

holiday attire. His tone is respectful, happy but not overly so. (I feel a warmth in his presence. I 



   

78 

feel that I can relate to him.) She engages with him in the same open and forthright way that she 

has with me. He asks a number of questions. Her responses are short, succinct. The 

conversation feels rushed to me, her disclosures premeditated; the way a radio interview during a 

morning news broadcast might be conducted. I get the sense that this is the expectation for how 

conversations are conducted between doctor and patient in this context. Efficient, to the point, no 

chit chat, no deviations. His responses are similar to the pharmacist and yet I sense a certain 

authority in what he says.  

He talks about switching her on a few medications. She expresses some concern about 

side effects. He provides some explanations on why some decisions were made, what 

alternatives they are considering. It feels collaborative to some degree and yet not so. A decision 

seems imposed to administer the stronger drugs now to be safe and sure rather than milder 

drugs with more uncertainty. She asks for permission to leave for home.  

(A grown woman asking for permission. Wow. This sounds bizarre and yet normal at the 

same time. Only in the hospital can such fully capable adults be reduced to the dictums of others. 

Given the subject matter, knowledge resides with the oncologist. He is in a privileged position and 

yet this power structure – her need to seek the approval of her doctor – seems so very normal to 

me. This power differential is so deeply ingrained in the culture that it becomes invisible, or if not 

invisible, then at the very least accepted. I soberly reflect on my own profession and practice. 

What is the nature of relationships that my clients and I form?) She has full trust in her doctor, 

explicitly stating such, which reinforces this relationship. “You are the doctor.” 

The above encounter reminded me that the cancer agency represents a distinct cultural 

context with accompanying practices, traditions and norms of behaviour. It impresses me how 

each individual in this context is well aware of their roles and engages with each other in ways 

that are consistent with that role. The immigrant young woman did so seamlessly. One moment, 

she was talking with me about the holidays and her family and the next, about her medication 

with her interprofessional care team. The subtext of their conversations also pointed to the power 

structures that exist between, for example, the patient and her oncologist, with her seeking 



   

79 

permission from him. All of this plays out in a way that seems entirely natural, perhaps speaking 

to the deep embedding of this institutional-medical culture within our society.  

The way each person in this scene communicates with each other is like a graceful and 

well-coordinated ballet; the institutional-medical culture, a choreographer‟s directions. Although 

the patient was born outside of Canada, she spoke very fluent English, conceivably reflecting her 

familiarity with the choreographer‟s directions. She was part of the ballet studio, so to speak. 

Conversely, it is apparent that there are things that would disrupt its graceful flow, things such as 

the addition of new dancers or dancers who have backgrounds in jazz, for example. Likewise, 

cultural outsiders who enter the cancer care system, such as newly diagnosed or immigrant 

patients, their family and even volunteers, will reveal its inflexible norms and practices. 

Field Notes 2010-06-17 

I walk into one of the chemotherapy rooms. A patient of Asian ethnicity is sitting in one of 

the chairs, his family of four clustered around him. (It feels lively but crammed, a change from the 

usual quiet.) My offer of coffee and tea is directed at the entire group. One family member speaks 

up, questions the nurse whether the patient can have beverages.  Sure. The family member-

interlocutor turns to the patient and asks in English. (I wonder if they serve as middle people 

because they feel a need to be of some use. All the while, I can‟t help but think that the patient 

sits in a protective bubble. I wonder if it feels anything like being trapped in a prison. I wonder if 

he feels conflicted, seeing the guards in this prison as his loved ones.) 

 My wonderings here points to a dilemma that I have often reflected on. To a patient, 

family members will often serve as an essential crutch in the patient‟s coping with cancer (Arora, 

Finney-Rutten, Gustafson, Moser & Hawkins, 2007). At the same time, family members can also 

make difficult the cancer journey. I think about the tensions that might exist in instances when 

the viewpoints of family members and patient are at odds (Freedman, 1993). For parents with 

cancer, complex and unique challenges exist in incorporating them into the cancer journey and 



   

80 

preparing them for the future (Hamilton, 2001). As a volunteer at the agency, I often times 

perceived a significant interpersonal barrier with the patient when family members are present. I 

opt to not enter rooms when patients already have company. Granted patients may prefer having 

their loved ones around over other HCPs – I must temper my own egocentrism – I wonder how 

medical professionals who experience such distance are impacted in their work. I remember the 

day in Baltimore when a social worker had come by to check in on Nímāmā. In spite of the 

significant emotional distress that she seemed to be experiencing, her interaction with the social 

worker was brief and congenial. To this day, I still wonder if my presence caused both Nímāmā 

and the social worker to feel more guarded, more restrained; preventing that interaction from 

being as valuable as it could have been. 

3.2.6 Language divides. 

Language gaps also create interpersonal divides between patients and their HCPs. Where 

family members exist, they often serve as valuable
33

 interlocutors in patient-HCP interactions. 

Where linguistic bridges are lacking, I have found there to be many different sorts of challenges 

to care provision.  

Field Notes 2010-10-21 

English is a foreign language for her. She accepts my offer to sit with her. I‟m hugely 

surprised and relieved. I notice how little I expected from this encounter, presuming immigrant 

                                                

33
 Family members are valuable in helping to bridge language gaps between patients and their HCPs. They 

are, however, also individuals with vested interests. As such, they will assess and filter words, possibly leading to 

miscommunication or incomplete information. I was interested to note that the Provincial Health Service Authority 

has a policy encouraging the use of third party/professional interpreters whenever possible. 



   

81 

patients to be more closed off.
34

 We talk. I ask questions. […] I‟m having a hard time hearing 

sometimes, because of her soft voice and throaty articulation. I catch only pieces, but reflect back 

to show that I‟m listening and trying. (I want to honour the story that she‟s willing to share. I 

wonder with impatience how long it will take to get a visa for her family member.) I interpret an 

expression of despair wash over her otherwise inexpressive face. 

A few weeks later, I meet her again.  

Field Notes 2010-11-11 

I enter her room timidly, re-introduce myself gently. She remembers. She just had a 

friend drop by and is expecting her daughter later in the afternoon. Her speech is soft and throaty, 

as I‟d remembered it. I have a hard time understanding her: There‟s a family in the adjacent bed 

speaking loudly. I comment on how difficult it must be to communicate with the staff. She points 

out that she has no trouble understanding nurses though she has hard time communicating her 

own thoughts. The woman next door has it worse, she says. Can‟t even understand.  

I felt frustrated with the clumsiness and incompleteness of my conversations with her. As 

much as the experience of cancer is often expressed in the broad strokes of anger and sadness, it 

is often in the subtleties of language that meaningful connections are made.
35

 There was much 

that I yearned to communicate to her but was unable to. In spite of my frustrations, we were at 

least able to connect on a number of topics. I felt encouraged that I was even able to look over 

her visa request letter. 

                                                

34
 This expectation of immigrant patients to be more closed off is admittedly a generalization, though I do 

not attempt to use it to limit possible connections. I am struck that I have formed this impression in the first place. I 

wonder how much this deduction has to do with my observations in the field versus my own preconceptions. If the 

former, does that reflect a discouraged attitude or disparity amongst immigrants in communicating with their HCPs? 

35
 I have experienced that sometimes, it is also in the silences that connections are made. For a greater 

discussion of this experience, refer to Chapter 3.4.6 Someone who is simply present. 



   

82 

Her reference to the patient in the adjacent bed who can neither communicate nor 

understand English was a sobering reminder of the significant challenges that some patients 

experience. I am reminded of one cheerless visit with a patient. 

Field Notes 2010-12-02 

A nurse enters to adjust the IV and equipment. She stays only briefly. Her interaction with 

him is minimal. (I wonder to what degree she feels uncomfortable or inhibited by their language 

difference. I wonder how much the service received by patients with language barriers suffers 

due to this barrier, how much patients lose out on the kindness, compassion and humanity that is 

afforded by language or more specifically, verbal communication.) She leaves. […] 

The nurse returns. He acknowledges her non-verbally in the room. She has to change 

the IV pouch. (I wonder if he really understands what he is being subjected to.) […] 

A food service staff comes to take an order for lunch. She quickly lists a number of 

choices which even for me is hard to decipher. He does not understand or does not know how to 

respond. She clarifies, rephrases her question. Each is struggling to understand the other. “Tuna 

or egg sandwich?” 

He thinks for a moment. “Tuna.” (I wonder if he‟s just guessing. If something as simple as 

ordering from a lunch menu could be such a struggle, I only wonder how much of his complex 

treatment plan he participates in deciding. Such a disempowering experience, to be unable to 

provide someone the vary information that forms his autonomy. I can‟t imagine a more vulnerable, 

more helpless position to be in. In counselling, we often talk about empowering the client and the 

family. I understand now how language can become such a significant barrier to that 

empowerment.) 

 In this scene, hospital staff seemed to just come and go in carrying out their duties. It was 

as if the patient was a mere recipient or subject of the care. As I noted, I am not even sure to 

what degree he understands what he is being subjected to. Although he carries on with 

remarkable composure while I am present, I can only imagine how uncertain and disorienting 



   

83 

this process must be for him. I recall one moment where, it was only through ad hoc 

interpretation support offered by a staff member and me that the health care team discovered the 

worries and distress of a patient who was nearly in tears. 

Then again, even with the greatest of language support services, the subtleties of meaning 

and feelings are lost in translation.
36

 

Hold Your Breath (Grainger-Monsen, 2005) 

Excerpt from 30 minutes, 35 seconds 

Mr. Kochi: (in heavy accent, amiably grasps doctor‟s hand) 

See you Dr. Fisher… I like you. 

Doctor:  I‟ll see you in a couple of months. 

Mr. Kochi: (turns to interpreter, in Arabic) What about my 

sore throat? Tell him to give me medication. 

Interpreter: (to doctor) He says what about the... 

Doctor:  …the sore throat? 

Everyone: (laughing nervously) 

Doctor:  (places hand on Mr. Kochi‟s shoulder, with levity) 

Take plenty of fluids. (laughs forcefully) 

Mr. Kochi: (to interpreter, frustrated) I need some medicine. 

This is a hospital. 

Doctor:  (with levity) It‟s what my mother always told me. I‟m telling him. Take plenty of fluids. 

Get some rest. 

Interpreter: (translates to Mr. Kochi) … 

                                                

36
 Sometimes this is intentional, and at other times unintentional (Grainger-Monsen, 2005). Words like 

cancer become semantically reduced to “masses” and “tumour”. An aversion to carrying a medicine pump is 

misinterpreted as a refusal to chemotherapy outright. Strong feeling words such as “angry” are moderated to become 

“mass”. 



   

84 

Mr. Kochi: (to interpreter, insistent) He needs to give me medicine also. 

Interpreter: (to doctor, smiles forcefully) …  

Mr. Kochi: (to interpreter, adding in broken English) Seven 

months, not take medicine for me, why? 

Doctor:  (holding out hand, gesture to end conversation) 

Okay. So take care and we‟ll make an 

appointment for two months but if you have any 

problems, then come in sooner.  

Mr. Kochi: (to interpreter, hold hands near throat) 

Interpreter: (nervously) Still want something for you now. 

Doctor:  How about some Tylenol? 

Mr. Kochi: (raises hands in exclamation) Tylenol, oh! 

Doctor:  (laughing) He doesn‟t like that. We need 

something more expensive than Tylenol. (turns to 

leave) Okay. Anyway, it‟s nice seeing you again, 

sir. (shakes hand of interpreter) Bye bye. 

Mr. Kochi: (without words, shakes head) ...  

As this and earlier stories exemplify, patients who encounter language barriers are often 

deprived of their very basic human capacity to express their feelings and in turn feel heard. I 

cannot imagine a greater deprivation in this world than not being heard. In this way, language, or 

rather the ability to communicate, can be considered a very important mediator of our autonomy.  

3.2.7 Perceptions that divide. 

Within a particular cultural context, I am also reminded of the many nuanced and subtle 

ways in which individual perception shapes the interpersonal connections that are possible. 

  



   

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Field Notes 2010-10-07 

I introduce myself as a volunteer and ask whether she would like some company. The 

patient looked me over for a good few seconds. After a pause, she finally declines. (I‟ve failed her 

assessment, judgement. “Is this the kind of person I would like to allow to enter my space?” I 

wonder what her criteria are. What are those critical pieces in that first impression? Beauty? Age? 

Ethnicity? An aura of compassion? Whatever it was, I certainly wasn‟t exhibiting them.) 

Field Notes 2010-12-16 

She comments about our age difference, assumes that I have not come to that stage of 

considering matters such as death. (I find myself feeling mildly amused and mildly irritated at the 

same time that she is making this assumption. She attributes to me a level of youthful immaturity 

that I believe I have passed. I wonder if she is discouraged by her belief that I don‟t get it. I 

wonder if she feels distant from me as a result. I wonder how her perception of me as an 

inexperienced, youthful person helps or hinders our relationship. Moreover, if I were her health 

care provider, how would our work together be impacted? I note that her oncologist – the one she 

seemed to admire and seek advice from – is much older, maybe in his mid to late fifties.) 

These entries make me wonder how I was perceived by the immigrant young adults I 

engaged with through this study. From my own vantage point, I share with them in some respects 

my cultural identity as an immigrant young adult. At the same time, I have never been diagnosed 

with cancer.
37

 I am in fact a very healthy, able-bodied individual, university educated. I speak 

English fluently and without any discernable accents. There is also my acknowledged role as a 

researcher; my objective, to acquire some information, some increased understanding from them. 

                                                

37
 I wrote one journal entry on a recent experience I had in waiting for the bus. It evoked some feelings and 

thoughts that were perhaps similar in quality but certainly not magnitude to some of the themes I have encountered 

amongst immigrant young adults with cancer. This was no doubt precipitated by my deep immersion in this inquiry 

for the past many months. This was an experience that I believe deepened my understanding of my role as a HCP to 

immigrants and young adults with cancer so I have included it as Appendix S: Journal Entry: Waiting. 



   

86 

In these ways, I perceive myself to be a perpetual outsider who will never truly understand their 

experiences.  

Then again, I recognize that I can never fully understand anyone‟s experiences because I 

am not them. I have not grown up in the cultural context that they did or experienced the many 

things that they have. I do not hold the beliefs or values that they do. Maybe I should just 

abandon this idea of being or becoming an insider. I should just acknowledge that I am a 

perpetual outsider and move on. I could even be proud of this fact, accept my position of not 

knowing and begin to connect with someone then without preconceptions, assumptions or past 

knowledge to mislead me. This sounds as sensible as it does reckless. Where do I situate the 

mountain of studies and reviews that have come before me on immigrants and young adults? 

What would be their usefulness? So many questions but no answers.  

I am aware that irrespective of my own identification as insider or outsider, the person 

with whom I am trying to connect will inevitably have his or her own perception of me 

(Egharevba, 2001). With some, they may see my dark skin and black hair, and immediately 

believe that I can understand their experiences, that a connection is possible. With others, as was 

the case in the previous two encounters, I may be dismissed because I am perceived as an 

outsider. 

It discourages me to think about how little of these interactions is influenced by my own 

concerns. Then again, this also seems to be quite a liberating thought, that someone declining my 

offer of company or care may have little to do with me. I chew on that thought for a while. It 

certainly relieves me during those days in which no one seems to be interested in my company. 

Of course, this works in the other direction as well. A patient‟s willingness to engage with me 

may often have nothing to do with me but much to do with their own circumstances and 



   

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openness. I welcome this line of thinking as I have too often sat after a counselling session 

ruminating over what I did not do effectively and how things could have been better. The strong, 

critical voice returns. I take ownership of certain outcomes that may not be mine to own. My 

failure, in turn, paralyzes me. Sometimes, it is the client‟s responsibility. Sometimes, I need to 

abandon the self-blame. 

I reflect back on my experiences as a volunteer, being driven by a sense of being needed, 

feeling gratified when someone expresses appreciation for my company and feeling dejected to 

have my company declined. As a care provider, my very identity is supported by people‟s need 

for me. Perhaps this pressure I put on myself is unnecessarily harsh. Part of me wants to accept 

this conclusion, but another part refuses to. I look back on my time with Nímāmā, the brief 

weeks that we shared in our lives. I feel a tremendous guilt in not having connected in the way 

that I should have, in not having been a support to her in the way that she needed. I want to 

acknowledge that much did not have to do with me, but part of me refuses to do so.  

I think back to a scene between a patient and his family member. At the time, I found 

myself being moved so much by their interactions but it was never clear to me why. Now, having 

had more time to reflect on my own narrative, it seems a little clearer. 

Field Notes 2010-09-30 

There is a patient and what seems like family member sitting on the couch in front of me 

facing away. They sit quietly. The family member makes short remarks every now and then in a 

soft, delicate voice. There is almost no response from the patient. (I even wonder if he‟s asleep, 

drifting in and out of consciousness from some extreme fatigue, not even being able to sustain a 

conversation.) I listen more closely. There are responses – he‟s not asleep – but they‟re barely 

audible and short and minimal. More of an effortful, barely there “mmm” and “un hun”. It seems as 

though both are trying to cling onto a conversation, some sort of verbal connection that they both 

lack the energy and will to sustain. The family member‟s occasional remarks therefore seem 



   

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awkward, a search for words to fill the emptiness where no words can be found. I feel the 

uneasiness, the exhaustion, the emotional pain. (I think about my parents, about the prospect of 

having them only in physical form, but without the emotional connections. The death not of a body 

but of a relationship. I would be utterly devastated.) I sense in the depth of me a profound longing 

to make it better for them, but I can‟t. I feel so helpless, so useless. 

Part of my sadness here related to fading connection between these two individuals. I felt 

sad for them, for their dying relationship. Then again, maybe it was not them that I was sad for. 

Maybe in this family member, I saw myself, a care provider for someone with cancer. As I did 

what I could to build a relationship with Nímāmā, I felt her slow pushing away from me, her no 

longer needing me. The more she pushed away, the less needed I felt. I wanted to make it better 

for her and yet, I could not.  

As I consider my own despair in these circumstances, I wonder about the many other 

family care providers such as the individual above who arrive at a point of feeling not needed. I 

wonder what their experience must be like, how devastating it must be for them. When we have 

no role, the divide between us becomes boundless. 

3.2.8 Finding clarity amidst confusion. 

I began this section wanting to explore the many factors that may contribute to the 

separation and isolation of people in the experience of cancer. If I can understand how these gaps 

arise, I may be better prepared to bridge them as a HCP. I realized early on how our disposition 

to handling people with care produces interpersonal divides. I explored how metaphorical masks 

become used by patients and others in order to convey positivity, normalcy, while concealing 

fear and uncertainties. Overlaying these behavioural factors are also contextual factors. This 

includes cultural norms and practices that direct a certain expectations of all roles involved. 



   

89 

Often times, it is the cultural “outsider”
38

 who enters this graceful dance that will experience 

certain missteps or inflexibilities.  

As I near the end of this section, I feel compelled to distil for my readers all of these 

reflections down to some useful lessons learned, a take away message. What do these last many 

pages really amount to? How do I as a HCP go about establishing meaningful connections with 

patients or their family? Honestly, I am not quite sure. There are too many factors to consider, 

too many individual narratives to draw from. I am confused. It is like my reaction to seeing the 

performance Handle with Care? for the first time. 

Journal Entry 2010-10-20 

I found myself feeling lost. I was unable to keep up with its rapid change of scenes, curt 

dialogue, plurality of voices and frenetic pace. Even with intermittent pausing and rewinding of the 

video, I felt dazed like having been put through a spinning amusement park ride that revolved 

much too fast. I would have to watch it again, and again I did. Instead of providing clarity, 

however, it remained ever confounding.  

For a long time, I was struggling to figure out why I wanted more. I understood the words 

and the exchanges, the content was clearly articulated, the performers were convincing, and yet 

the message eluded me.  

Then it occurred to me while I was volunteering at our local cancer agency. My goal is to 

become a competent cancer care provider. I wanted the video to teach me something. I wanted 

to know how to handle patients with care. And yet, this video was not providing me that neat little 

handbook. The plurality of voices in the performance contributed to what amounted to a 

cacophony of differing experiences. There were often divergent views expressed by the breast 

cancer patients about issues like their desire for information, autonomy or involvement by their 

                                                

38
 By cultural outsiders, I am referring to people who may be unfamiliar with the norms and practices of the 

medical institution. This might include newly admitted patients, immigrants or previously healthy young adults. 



   

90 

family. As noted in one comment by a doctor, what constituted help “varies a lot” between 

patients as well as for a given patient at different times.  

I realize now that the purpose of the performance was not to provide a handbook or 

manual for working effectively with metastatic breast cancer patients but rather to confuse and 

raise doubt. As Kleinman and Benson (2006) point out, [cultural] competency does not entail “a 

series of do‟s and don‟t‟s that define how we treat a patient of a given […] background” (p. 1673). 

It is not about trying to learn to care through guides, textbooks or at arm‟s length. Rather, the 

performance invites us to get to know the patient or family member and their viewpoint, to ask the 

question “what matters most to them in the experience of illness and treatment” (p. 1676). 

That is it. Maybe instead of searching for that illusive path to bridge the divide, I ought to 

just invite myself to be curious, to ask questions. If anything, I have certainly left myself with 

that lesson. I am confused, and humbly so. 

3.2.9 Practice dying.  

I reflect back on the many stories that were shared with me, the many experiences that I 

witness. If there is one message that serves as a lesson or reminder to me in creating meaningful 

connections, it would be the disarming encounter I had with one particular young woman with a 

cancer diagnosis. 

Field Notes 2010-11-04 

As she shares her experience, it strikes me how healthy she looks, how youthful she 

looks. I would‟ve never guessed she has cancer. She says that she doesn‟t let the disease weigh 

her down, even after five years of cycling through remission and recurrence. Expresses her 

annoyance with others who adopt the victim identity, “practice dying” as she calls it. (I find the 

expression cute. It sticks with me.) I put forward the idea of a hospital as a jail for some. She 

thinks the idea ridiculous. She feels incredible freedom to eat what she wants, to meet with 

friends at all reasonable hours. (I‟m impressed by her vibrancy, her energy, her spunk.) She 

continues on about her adult children. (I‟m startled by her mention of adult children. She looks so 



   

91 

young. It wouldn‟t be a stretch for me to consider her a peer, someone to go hiking with, or party 

downtown with.) 

We talk about her changing relationship with friends and extended family that happened 

after she was diagnosed, how some friends became strangers. She puts a real premium on 

normalcy, on not being treated any differently than when she didn‟t have cancer. She expresses 

her disappointment, disgust when people come in and express sympathy or concern for her 

illness. She greatly values her friends who visit her in hospital and treat her like she was at home, 

without a disease. 

(I‟m impressed with the way that she is able to continue on with life, to look ahead to the 

future, to make plans, to travel. The way she expresses her dissatisfaction with the medication, 

critically evaluates them, takes only what she needs. With an illness that seems to rob people of 

control of their body, their life, she has maintained it. She feels secure with herself, her body, her 

beauty. She has the energy of a fighter.  

 Maybe that is what we all want. To be treated as a normal human being, not a patient, not 

a masked stranger, not a fragile object to be handled with care. That message resonates with me. 

3.2.10 Summary. 

The title of the production that began this discussion, Handle with Care? reflected the 

approach care providers may adopt in interacting with a person with cancer. They are treated like 

fragile objects, things that can easily break. In turn, we become careful, censored, restrained. We 

adopt a false, disingenuous optimism. We keep to ourselves our own aches and pains.
39

 We 

pretend that our lives are the same, without interesting changes. We do not want to bother you, to 

sadden you, to make you feeling left behind; and as a result, we do all of this.  

  

                                                

39
 For an expansive reflection on my experience of protecting others from my pains, refer to Chapter 3.4.3 

Protecting each other. 



   

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3.3 Deconstructing the Health Care Provider 

Field Notes 2010-12-23 

In the lounge, a woman is lying on the couch by the window. A thin blanket is draped over 

her body. The couch is not entirely long enough and so she lies in a semi-foetal position. Her 

arms hide her face. I watch her for a period. She remains motionless. She is asleep, I gather. 

(Not just briefly resting her eyes. She is deeply asleep, and yet, not comfortably so I am guessing. 

Comfortable would be lying stretched out, arms over her head, airways unobstructed. No, she is 

sleeping where she can, adapting to the changed and changing circumstances. If life was normal, 

she‟d be sleeping at home, body outstretched, thick warm blanket, sleeping clothes. No, this is 

not her norm. She has adopted a new norm, perhaps reluctantly, resentfully, maybe even angrily. 

This is not a culture she wants membership in, this being a family member of a cancer patient but 

she has been forced to be a part of this. I feel sad for her, as she sleeps uncomfortably, 

abnormally. This is her momentary respite, respite from her resentment, her anger, her cultural 

membership.) 

This scene of a woman sleeping uncomfortably on a couch in a lounge of the cancer 

agency was resonant to me. It represented for me the tremendous efforts and sacrifices made by 

family members who serve as company in the patient‟s journey of illness. The significant 

physical and psychological tolls that the cancer experience may have on family members and 

other loved ones have been thoroughly substantiated (Stajduhar, Barwich, & Fyles, 2008).  

In acknowledging the significance of individuals in the lives of patients, I find myself 

thinking about how I am always fumbling for a term to best describe them. Family members 

include some people but necessarily exclude others, even if the term was subjectively defined. 

What about loved ones or significant others? They imply a certain evaluation of the quality of the 

relationship. That would also exclude certain people who may contribute in meaningful ways to 



   

93 

the patient‟s journey. I struggle to find the right term to most accurately capture these individuals, 

and their relationship and responsibility to the patient. 

But then, there is the term health care provider (HCP). What do I mean when I refer to 

someone as a HCP? Who is a HCP anyway? Best to figure this out as I have self-identified as an 

“emerging HCP” with the accompanying implications of its cultural membership. This need for 

clarity led me to the current section on deconstructing the HCP. In what follows, I examine how 

I and others use the term HCP, and the impact of our use of this meaning may either support or 

hinder cancer care.  

3.3.1 Who are health care providers? 

I began with my own conception of the HCP. Reflecting on my earlier search for a 

suitable term for the many supports of a patient, I considered HCP. On first pass however, I intuit 

that describing a family member as a health care provider seems somehow demeaning or 

detachedly cold. It is a strange reaction. Perhaps, this is related to my association of HCP with 

the institutional and medical systems, which are somehow distinct and separate from the family 

system. The term HCP conjures up images of doctors in lab coats and nurses in patterned 

uniforms. Health = medical systems > nurses and doctors. That‟s interesting. I continue to 

subscribe to the dominant semantic practice of equating health with medicine in spite of my 

cultural identification as a counselling psychology student and mental health provider who 

maintains the view that health is a complex construct with multiple dimensions. I find this 

realization disheartening. It is perhaps reflective of how pervasive this biomedical culture is in 



   

94 

our society and how we may subscribe membership to cultures in spite of our reluctance or 

misgivings.
40

  

So, my own colloquial definition of HCP would include doctors and nurses. No doubt, 

the list could expand to include a number of other occupational titles. As I sat around the 

discussion table for my course on Interprofessional Psychosocial Oncology, I thought about the 

social workers and occupational therapists who were not only my classmates but also possible 

colleagues in an interprofessional care team. Through our discussions, I became aware of the 

valuable knowledge and expertise these professionals are able to contribute to improving patients‟ 

overall health. These professionals are no doubt HCPs in every sense of the word.  

With this new awareness, I was certain that there were more members of this health care 

team. Looking back over the many cancer agency paraphernalia, I came across few lists that 

made me feel quite heartened.  

                                                

40
 I am taken aback by my association of the biomedical culture with detached coldness. To refer to 

someone as a health care provider is even a pejorative in my mind. Why do I harbour such disdain for the medical 

culture? Perhaps it has to do with my experiences in Baltimore with Nímāmā, with their detached coldness in their 

focus to service her medical-physical needs and in the process, overlook her more painful psychological needs as 

well as the need of her family. As an emerging health care provider and a family member, I would imagine that such 

an attitude of disdain and distrust would affect my willingness to work collaboratively with others in an 

interprofessional care team. Moreover, I wonder how much my negative attitude exists in others who share my 

cultural affiliations to family member and counselling psychology. What fosters this perception of detached coldness? 

This would be a worthwhile research inquiry. 



   

95 

 

Image 7. Your cancer care team. (n.d.). Retrieved March 16, 2011, from 
http://www.bccancer.bc.ca/PPI/InfoforNewPatients/YourCancerCareteam.htm  

  

 

 

http://www.bccancer.bc.ca/PPI/InfoforNewPatients/YourCancerCareteam.htm


   

96 

It is reassuring to think that there is such a diversity of professionals (and accompanying 

knowledge base) supporting patients and their family. Given that health is a complex and 

multidimensional construct, no single disciplinary approach would suffice. At the same time, the 

extensive list of HCPs makes me uneasy. It is falsely reassuring, creating this illusion that 

because the system is comprehensive, patient care is improved. Unfortunately, interprofessional 

education and practice is an ideal that often is difficult to implement. In our weekly discussions, 

many challenges were raised in carrying out interprofessional collaboration, including a lack of 

time; a lack of awareness of others‟ disciplinary knowledge or expertise; a disciplinary 

chauvinism; geographical separation of team members; any of which could derail efforts to 

maximize the effectiveness and comprehensiveness of patient care. Clearly, better care is not just 

about having a huge interprofessional team behind a patient.  

Moreover, I have often found myself feeling extremely daunted by the complexity of a 

case study while trying to answer questions like “Which HCP is best suited to address this issue?” 

and “Who should take the lead?” Diagnosable distress in a patient, significant functional 

impairment, outstanding tension with family members to the point of estrangement, unresolved 

grief issues. One HCP expressed anguish while reflecting on a particular case. “Doing short term 

counselling with someone from another country with cancer, there is so much to explore about 

their beliefs and attitudes… even process their being in counselling. Where do I even begin?”  

It is in these moments of despair that I find myself questioning the value of what I can 

provide as a HCP. It is in these moments that no well-functioning interprofessional team in the 

world seems adequate. One particularly poignant interaction comes to mind. 

Field Notes 2010-12-02 

I enter a room. There are two beds here. In spite of the brightness of the day, it is 

unusually dark in this room. I notice the blinds drawn, partly blocking some of the light from 



   

97 

coming in. The bed by the window is occupied but the curtains around it are drawn for privacy. 

The little natural light that is able to enter the room is therefore further prevented from reaching 

the bed by the door. I find an older woman sitting there. She is quiet, present, seemingly in 

thought. As I approach, she notices and turns her head towards me. She has a gentle and patient 

smile. 

I introduce myself. “Would you like some company, someone to sit with?” 

“Why sure,” she responds without second thought. As I pull up a chair next to her bed, I 

cannot sense any judgment from her, the sizing up that most patients do when I offer my 

company. I admire her openness to me. I wonder what makes her so willing to accept. I find out 

that she is here from a tiny community up north. Her tone is soft, patient and friendly. I feel at 

ease.  

Soon into our conversation, another woman arrives. The patient introduces me to her 

sister, comments that she‟s been enjoying her conversation with me. I‟m delighted that my 

company is welcomed. At the same time, I want to leave. I feel like I intruded on the family visit 

and now am standing in the way of them.  

I‟m surprised that this patient didn‟t mention anything about her family being here. 

Patients usually make it known that their family has just stepped out or has just visited, or will be 

coming soon. It‟s a polite way to say, “I don‟t need your company. I‟m well supported for now.” It 

occurs to me that in the hierarchy of valued company, I‟m pretty far down from the family member.  

Recognizing this, I feel compelled to leave. I don‟t want to be the barrier between these 

two sisters. Just as I‟m about to wish them well, she finds the chair closest to the door and sits 

herself down there a great distance away. I‟m momentarily stunned, confused. She‟s supposed to 

stay standing so that I can vacate my seat for her. I‟m not sure what to do now. Does she want 

me to stay? Does she not get along with her sister? She doesn‟t even try to move her chair closer. 

I try to make do, resuming the conversation with the patient, updating her sister as I go. 

This is new territory for me. I‟ve only ever been company for patients themselves – but both 

sisters make it feel so easy as though it‟s perfectly natural for me to be there. We continue on for 

a while the three of us. The subject of food comes up. I note that there are a few places to get 



   

98 

food. I offer some snacks. They gratefully accept so I head off to get some cookies and juices. I 

greatly appreciate and admire their unconditional acceptance of me. 

As I return to the dimly lit room of the two sisters, I notice the chair by the door empty. 

She is beside the bed now, closely clutching her sister on the bed as a nurse works on setting up 

an IV drip to deliver what is probably chemotherapy. Their embrace conjures up the image of two 

penguins huddling tightly amidst a barren land, the cold winds howling around them. The only 

support they have is each other, only the warmth of their bodies keeping each other alive.  

They don‟t even notice me. I don‟t want to be noticed. Approaching the door quietly, I 

leave the snacks where they can be found and promptly head on my way. I blink to keep the tears 

from accumulating in my eyes. 

“Two penguins huddling.” It is a vivid image. I quiver thinking about it.
41

 In spite of their 

remarkable openness in inviting me, a complete stranger, into their lives, their support for each 

other represented a care that is irreplaceable. This scene reminds me of the immense importance 

of family members. Their presence and the care that they provide are irreplaceable. For me, this 

means that I must always work to include the family members in the care process.  

3.3.2 Burdens on care providers. 

I also think about how the lives of two penguins separated from their pack would be 

inseparably co-dependent. In order to survive, both would have to stay alive to provide warmth 

to the other. If one is to perish, than so will the other. This idea of co-dependency is perhaps best 

illustrated in the many studies on magnitude of grief experienced by surviving care providers, 

including parents of children with cancer (Kreicbergs, Lannen, Onelov & Wolfe, 2007).  

                                                

41
 This display of commitment to family is a value that I resonate with. I am able to identify myself in their narrative. 

Growing up with my parents as an immigrant family in a community where many had generational ties, I often did 

feel as though we were the few penguins huddled together, helping each other survive. 



   

99 

Moreover, the cancer care community is just recently coming to acknowledge the heavy 

toll of the cancer experience on the care providers (Stajduhar et al., 2008) as well as on children 

and siblings, who are often overlooked amidst the attention on the patient (Hamama, Ronen & 

Giora, 2008). As reflective of the currency of these considerations, an increased attention to the 

entire family system was uttered as a rally cry at a recent psychosocial oncology conference I 

attended. A practitioner working in palliative care challenged the audience to expand our scope 

beyond the individual patient to the family members, which necessitates a paradigm shift to think 

of the cancer experience as continuing after the death of the patient.  

I am reminded of many instances of the immense pressures endured by family care 

providers. I think about my cousin, whose tensions with his mother and partner became 

magnified in the face of his mother‟s illness. I think about an immigrant young adult I spoke to, 

whose mother put her life and career on hold, making significant financial sacrifices to leave her 

homeland to care for her child in a foreign country with different languages and customs. I think 

about a quick and wordless encounter in the lounge of the cancer agency that called out to me 

more than any words ever could.  

Field Notes 2010-12-23 

A man is sitting quietly on the couch in the corner. He speaks softly into his phone, his 

voice gentle, comforting. I catch only his last words. “You be strong, grandma. You be strong. 

We‟ll get through this.” The man flips closed his phone, stands up from the couch and proceeds 

to walk out the lounge. As he walks by, I hear a heavy sigh. To me, it is the most heavy, 

emotional cry of exhaustion, of anguish. My heart sinks. It‟s gut-wrenching. I feel a profound 

despair, a great sympathy. I hear a grown man carrying the great burden that he must bear, while 

feeling the duty to project a sense of strength. Otherwise, the entire structure collapses. 



   

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The depth of this man‟s sigh, the lethargy with which he got up off the chair, the 

heaviness with which he walked across the hallway. To me, these were all signs of the heavy 

tolls that this man bore for his family, for the entire structure that depended on him. I find my 

heart goes out to him. His linchpin role within the family is a sort of cultural membership that I 

share with him. Our narratives need not be the same and he might never believe this, but my 

perception of our shared membership creates in me a compulsion to reach out to him, to support 

this man who bears it all but cannot, at a risk to his family, reveal his exhaustion.  

For me, this is a striking reminder of the significant role that I may serve as a HCP in 

supporting both the patient as well as their family. Often, within our frantic efforts to ease the 

pain and suffering of patients, we tend to forget how stressful the process is on people 

surrounding the patient (practitioner, conference key note). They will be going through their own 

grieving process. The loss is perhaps of a mother or father, sibling or child; and the subsequent 

role that their family member had filled in the family or the support that they may have counted 

on. In considering the man who tries to comfort his grandmother while he is near collapse under 

the weight of his tremendous responsibility to be strong for his family, supporting the family 

members will have manifold values. They are valuable members of the HCP team and should be 

acknowledged as such.  

3.3.3 Volunteers as care providers. 

Who are HCPs then? So far, they include what I perceived as the medical staff, members 

of the interprofessional professional team and family members of the patient. This growing list 

of individuals prompts me to consider whether there exist limits in this search for HCPs. A very 

lengthy volunteer experience comes to mind. It began in the lounge while I was writing notes to 

myself. 



   

101 

Field Notes 2011-02-03 

A woman abruptly appears in the lounge. She looks familiar but I can‟t tell for sure if she‟s 

a nurse. She asks if I speak Chinese. (The way she asks her question takes me by surprise. 

There‟s no pretext, she‟s to the point.)  

I pause for a moment before responding. “Well I speak Mandarin.” 

As though she doesn‟t really care or doesn‟t want to care, she responds in curt terms that 

there‟s a patient who speaks Chinese who is trying to communicate something that she doesn‟t 

understand. My helping instincts immediately become mobilized. As I confront what is expected 

of me, I‟m uncertain whether I can be of any help, especially if she can only speak Cantonese. I 

quickly try to explain that to her. I‟m also nervous about my Mandarin fluency. What if she speaks 

Mandarin but her requests are complicated and I screw up? What if I mistake her meaning, relay 

the wrong message? My body tenses but I force myself onward, wanting to help in whatever way 

I can. If not me, then who? I stand up rigidly, turning to follow her.  

A man sitting on the couch speaks up. He can help.  

“So you speak Cantonese?”  

Both.  

My body instantly relaxes. I offer him my role. He says that he can help if I have any 

trouble. (So, he‟s hesitant. I wouldn‟t blame him. Who knows what this patient needs.)  

I continue on out the lounge. We speedily walk down the hallway. She leads the way, not 

looking back. No dialogue, no further explanation about what she suspects. (I feel slightly irritated 

that she hasn‟t even checked in whether I was willing, comfortable or capable of helping. It‟s as 

though she‟s passed the problem onto me and so now she no longer has any responsibility to it. 

The hand off. Not my problem anymore. I wonder if she knows that I‟m a volunteer or if it even 

matters?) 

We enter the room. I arrive at the patient‟s bedside. “Can you speak Mandarin?” I ask in 

Mandarin.  

“Mandarin,” she responds, clearly not comfortably. I ask again in a different way just to 

make sure. Her response is tentative, broken. Okay, back to the lounge to call for assistance.  



   

102 

“Nope. She speaks Cantonese,” I say to the man who spoke both dialects. (I notice that 

there‟s a sense of urgency in my tone and pace. It‟s that I want to bridge this communication gap, 

to relieve her voiceless-ness as soon as possible. What if she has something incredibly pressing 

to express? What if she is in pain?) He follows me. I notice that the staff woman is not with me 

now. (Where did she go? Could she not offer more information?) 

I guide him to the room, expressing my appreciation for his help en route. He moves right 

up next to the patient bedside and bends down to the patient‟s level. It not only allows him to hear 

more accurately but also conveys a sense of respect. (I admire his presence of mind or perhaps 

his natural instinct to do this. His actions make me reflect on how I had just stopped at the foot of 

the bed, ever distant, ever impersonal. I wonder how much of this the patient experiences, how 

significantly it changes the patient‟s experience of connecting and relating with another human 

being, as opposed to merely communicating.) 

They speak for a long time, alternating back and forth. I cannot even begin to guess what 

they are discussing. Every time she speaks, she grimaces. Her eyes squint not so much in bitter 

frustration but rather in sadness or anguish. Her statements are lengthy and unbroken like the 

flow of water from a dam that has been restrained for much too long. He responds calmly and 

softly, without hesitation. (It seems to me as though he knows what to say, how to comfort her.) 

They continue speaking. I remain at the foot of the bed, completely ignored by them. I‟m tempted 

to leave but it doesn‟t seem right. I feel responsible for seeing this interaction through to 

resolution. Besides, I can‟t just abandon this guy who so generously stepped into this role. What if 

he needs help in some follow up action? What if he needs emotional support or to debrief a 

troubling conversation? No, I need to stay put. Despite my being forgotten about in their 

conversation, I still have an important role still.) 

As I stand there patiently, I notice the staff woman walking around the room. My thoughts 

turn to her. She moves busily around the room wiping the floor, cleaning the bathroom. (So she is 

a caretaking staff, not the nurse. The realization somehow accompanies some degree of 

forgiveness, as though it is expected for a caretaking staff to be so curt and that more should be 



   

103 

expected of a nursing staff. I catch myself using this classist stereotype. It‟s reprehensible. I‟m 

ashamed to find myself thinking this way.) 

(I wonder what her matter-of-fact behaviour is due to. It could just be her personality, as 

in a disposition to act in a particular way and she did not notice the irritation I felt because of it. 

Then again, it could be a function of the cultural context that we‟re in. “Never look for a 

psychological explanation unless every effort to find a cultural one has been exhausted” as 

anthropologist Margaret Mead (Mead, 1959 p. 16). Perhaps this is the prevalent culture amongst 

health care providers who work in a cancer care setting. We step in where we can despite our 

distinct job titles or professional training. Perhaps in this aspirational interprofessional care 

context, our responsibilities ought to remain intentionally fluid, not rigid. These interpretation tasks 

get being filled by those who are able to in the moment. Then again, could this fluidity be 

reflective of a system that does not have clear guidelines, protocols to follow? This Cantonese 

speaking patient seems to have experienced a communication breakdown over an extended 

period of time, not just in this instance. Is my fluidity reflective of a gap in the system? Moreover, 

what about this handing off of responsibility that I‟ve experienced.)  

My attention returns to the conversation. Her statements are now shorter, his longer. 

(Something seems to have changed in their relationship. He seems to no longer be in the role of 

listener but is instead providing information or advice or something. I begin to feel uneasy, 

concerned whether this may be what the patient needs right now. Maybe so. Who am I to judge, 

not understanding a word.)  

He is still talking.  

He pauses. I look to her reaction. Her expression seems to be of despair; cheeks 

clenched upward, eyes squinting, jaw tense. She seems to be exerting a great effort to hold back 

whatever she‟s feeling inside, to not break down in tears and yet her cheeks and jaw begin to 

quiver. (I still don‟t know what is going on. I feel a profound sadness, however. A sadness that 

words can‟t describe.) He offers a few words, perhaps to console her, try to instil hope in her. (I 

wonder what he‟s feeling right now. Discomfort? I wonder how much if his words of console are 



   

104 

for her and how much for himself.) He steps backwards. Nods. Reaches out to touch her, the first 

time in this interaction as well as the last. He walks away. I follow this time. 

I thank him for all his help. Apologize that this probably wasn‟t what he had signed up for.  

“No problem. I‟m a health care provider too.” (Ah, I see. That‟s why he seemed to have 

so much to say to the woman. Judging by his clothes, he must be social worker or something.) 

Medical geneticist. “I don‟t get to talk to patients very much. (Surprised. Interesting that he 

considers himself as part of the team as well.) He asks me about what I do. “Volunteer.” He 

rephrases his inquiry to get at what he means. “What do you study?”  

I hesitate, seeing where this is going. “Counselling Psychology,” I disclose rather 

reservedly.  

“Ah!” he remarks. “So you should have been the one in there.”  

“Well it‟s the language thing,” I admit trying to make a joke out of it but feeling shameful 

on the inside. It‟s a forced admission. Secret let out again. My feeling of self-worth takes another 

clubbing at the hand of myself. 

Feeling responsible, I outline that I‟ll take what I‟ve learned and pass it to the nurse. Can‟t 

just let this conversation go unheard.  I clarify what he has learned from the conversation. 

Frustration with not being able to clearly communicate with hospital staff, anxiety with not 

knowing road ahead, regret that even when her son is around, many conversations go over him, 

suggestion for an interpreter. It strikes me how familiar and basic her sentiments are. People just 

need to be listened to, to have someone present. My gut wrenches. I wish I could have been that 

for her.
42

 

                                                

42
 The accumulation of encounters such as this one, although unsettling and confronting of my 

shortcomings, has helped me acknowledge the privileged position that I occupy as a bi-ethnic individual. I could, 

with some effort to improve my Mandarin fluency, support this population that seems so very underserved even in a 

health care community as diverse as we have here. Refer to Appendix E: Journal Entry: Privileges and 

Responsibilities for a more in depth discussion about how I have found ways to apply myself as a result of this 

inquiry.  



   

105 

“If not me, then who?” Amongst other themes, this question of responsibility was central 

to this encounter with a patient whose English proficiency served as a barrier in care. As 

members of the ethnic Chinese culture, this HCP and I felt compelled to help this woman in her 

time of distress. This was not part of any job description but we stepped in because we could. I 

myself felt compelled to stay in the room even though I had no skills to contribute. I wanted to 

support this individual and complete the follow up.  

As I questioned at the time, it was not clear who was there to support the client. Such is 

the risk when many people are involved in the care of the patient. In my interprofessional 

psychosocial oncology class, this diffusion of responsibility or lack of clarity was considered a 

major contributor to the ball being dropped in care. Who is responsible for helping this 

individual?  

I feel infuriated just now in hearing myself even ask this question. Who is responsible? 

When someone just needs to be accompanied and understood, why is it even about a 

responsibility as though it appears on our job descriptions. The question shouldn‟t be “Who is 

responsible?” but “Who is willing to respond?” At times, it is up to those who are capable and 

available to maintain an openness, a desire to take responsibility.  

Any person can make a difference. 

I can identify why taking responsibility is such an important point for me. It goes back to 

one very emotional exchange in Baltimore. 

It is Friday afternoon. I only know this because I overheard one of the hospital staff 

rejoice about it as I was walking about the hallways earlier. Otherwise, I would not know. The 

days are all the same within these hospital walls. Each day blends into the other, each meal 

infringes upon the next. 



   

106 

I am now cozying up on this my makeshift bed of a Lazyboy. Reading a novel that I found 

in the library. Usually I fall asleep while reading but these days, I‟m well rested, overly rested, 

getting all the sleep that I need. It has been a rather quiet afternoon. On the encouragement of 

her doctor, Nímāmā and I tried for a brief walk around the ward. We didn‟t get too far until we had 

to come back. Exhausted. 

I hear a quiet murmur. My attention turns away from the story of conspiracies and 

murders. I hear it again. Not a murmur though. A moan. It‟s Nímāmā. She‟s in pain. I get up from 

my bed and approach her.  

“How is everything?” No response. Her eyes are shut, her body hunched over, her face 

grimacing in a sign of great pain. I tremble seeing her this way. I feel some remnants of her pain. 

“I‟m going to get the nurse,” I try to assure her, not even sure if she can hear me behind the veil 

of her pain. 

My pace is fast, as fast as the institution would allow. Approaching the nurse station, I 

identify Nímāmā‟s nurse. She seems relaxed, engaged with her peers, probably about their 

Christmas festivities. “She is in pain. Could you come quick.”  

“It is about time for her morphine. Let me page the doctor to check if it‟s okay to give it to 

her.” Her words seem frustratingly unhurried. A rhythmic southern drawl. There‟s nothing more to 

say. I head back to the room.  

Her state is unchanged. “They‟re going to check with the doctor whether it‟s time to 

administer your morphine,” I relay to her. Too anxious to sit, I pace around the tiny room. Nímāmā 

continues to moan. 

I glance at the clock. Fifteen minutes pass. My anxiety and discomfort and irritation 

continue to build. Thirty minutes. Forty. The pressure within me is reaching a breaking point. I 

rush out the room and back to the station.  

She and her peers are just as they were before. I try to restrain my voice, try to remain 

cordial. “She is still in pain.” I‟m not sure what else to say to not irritate them. 

“Oh.” She smiles back. “I checked with the doctor and your aunt isn‟t due for her 

morphine for another two hours.” 



   

107 

My teeth clench. I draw in a deep breath, chest raised, readying to explode. “Abort! Abort! 

It‟s not going to help,” a voice screams in my head. I heed it. I‟m speechless, shocked by her 

seeming indifference to Nímāmā‟s pain, to the gravity of the situation. Why wouldn‟t you just 

come and tell us then?! Then at least we‟d know to expect it! I want to scream all this at the top of 

my lungs. I want to teach her a lesson with my fury. I want her to hear me, but she doesn‟t. I 

restrain myself. It won‟t help. I just swallow my fury, turn around and go back to Nímāmā.  

I felt completely powerless in this interaction. What could I do? Protest in outrage? No. 

As my voice of reason warned, it was not going to help. As a family member, I felt my voice 

silenced in light of the circumstances. Our nurse had occupied a position of control over the care 

we receive. She may choose to be more open and communicative, or to leave us in the dark. My 

protest would have if anything aggravated her. We would have been deemed the “difficult 

family”. Our care would have suffered as a result. 

3.3.4 A willingness to respond. 

Taking responsibility has since been quite important in our relationship. Too often, such 

as in that interaction, I have experienced being passed off to another without support and follow-

up that I felt compelled to stay with that Cantonese speaking woman and hospital staff until the 

resolution of that situation.
43

 I was just a volunteer, but even in this role with neither knowledge 

nor control of care, I felt more empowered than the patient. The patient was completely 

powerless. Her language barrier robbed her of the one source of her power, her voice. With 

openness and a willingness to adopt responsibilities not listed in our job descriptions, we were 

                                                

43
 As I recall this situation, I am confronted with the painful fact that even with my most fervent effort to 

help that woman, I failed her. I failed to return to her after speaking with her nurse to assure her that her voice was 

being heard.  I have done no better than the nurse who responded to Nímāmā‟s cry for morphine that day. As a HCP, 

am I (are we) doomed to let down my patient? 



   

108 

able to give her voice. One language-challenged volunteer and a medical geneticist on his lunch 

break. 

Such stories are to me heartening reminders that any individual has the power to affect 

significant impact on the care of a patient, whether it is by offering some bridge between 

languages or in simply being willing to listen. As an example of the latter, I recall one 

memorable encounter with whose life journey was eerily similar to my own. 

Field Notes 2010-08-19 

I return to the waiting room, feeling lethargic. I notice that the teenage son of the patient 

who had just gone in is sitting on the couch. I ask if I can join him. He accepts with minimal 

acknowledgement. I sit down. Just a moment passes and suddenly, he starts talking to me. I‟m 

told of his upcoming year, his needing to work hard for the first half of his high school grad year 

with all the applications. I listen, recognizing my role as the listener, feeling in a way confident that 

I can do this competently. I empathically reflect. The conversation takes a turn. 

He tells me about being here for his mom, their strained relationship, her worries about 

everything these days, his frustrations/resentment, wanting to get out of the house, hopes for his 

mother to go back to China where she would be supported and connected with family, his 

burdens/responsibilities going into Grade 12 and needing to get good grades, his university 

considerations given his mom‟s wishes and his own, his feelings of being stretched by his own 

interests and that of his mother‟s, the support of friends on his illness, the two-faced existence 

that he lives. “Everybody thinks I‟m fine.”  

(As we talk, I‟m struck by his maturity, his mature articulation, his knowledge of the 

family‟s circumstances, his consideration of different points of view. I weigh the various 

responsibilities I have in my volunteer role and reassure myself that I have to be here for this 

person now.) We speak for what seems like half an hour. There are contemplative silences which 

don‟t feel uncomfortable. I comfortably allow the space, knowing that he yearns to fill it. He seems 

to be thinking. When he begins speaking again, his pace is regular, as though he‟s not rushing to 

fill an uncomfortable silence. This is honest and raw, not scripted. I stay with him. (I‟m startled on 



   

109 

the inside. We didn‟t even bother with names. I‟m now feeling uneasy, wondering whether I‟ve 

stepped over my boundaries as a volunteer. I‟m concerned about him, his circumstances, his 

telling me all these things. Do we need to find a private room to talk? Will he say something 

private that he‟ll regret not being able to take back later?) 

The conversation reaches a natural pause. He needs to go check on his mom. I say that 

I‟ll be here. (It doesn‟t feel like abandonment, just a break to recharge.) We finally introduce 

ourselves, shake hands. I go for a walk, quickly trying to decompress. Something heavy has been 

put out, unexpectedly.   

I feel such tremendous sympathy for this teenager, this young man. We share so many 

cultural memberships. He is his family‟s cultural linchpin, serving as an interpreter, an advocate, 

a peacemaker, a mediator and now a care provider for his mother. He has been thrust into 

circumstances, forced to take on heavy responsibilities way beyond his years. There are so many 

parallels between my own narrative and his. Perhaps that is why I felt so moved and so 

compelled to reach out to him. I did not have to sit down beside him. I could have easily opted to 

give him his space, seeing how troubled he felt. But I did choose to sit next to him. 

Conversely, he did choose to accept my sitting next to him and to share his story with me. 

What caused him feel such a degree of comfort and safety that he could reveal himself in such a 

way? Maybe he had, as I did, recognized our shared cultural memberships and felt assured that I 

would understand, that we would speak the same “language”. Then again, maybe it was just 

simply my young age. One way or another, he felt compelled to reach out and I in turn expressed 

my willingness to receive him.  

Since that encounter, I have also reflected on the significance of the green volunteer vest 

that I wore that day. It is by no means an insignificant aspect of the way that I was perceived by 

this young man. Like the head covering for a patient, the lab coat for a doctor, the patterned 

uniform for a nurse, the hair net for food service staff, the white uniforms of porters, the blue 



   

110 

jumpers of maintenance staff; my vest served as a visible identifier within the cancer agency
44

 

and to him. Moreover, they serve to facilitate communication. Thinking back to when I first 

began at the agency, I had struggled greatly to locate myself, to find the right person to talk to. 

As I learned about these identifiers and countless other more subtle cultural behaviours and 

practices, I felt more oriented, more empowered. For a patient or family member who does not 

understand this language, I can only imagine how disorienting their experience must be. 

What if this young man felt compelled to share his story for no reason other than the fact 

that I was a volunteer? This seems to make sense. In this convoluted hospital setting of health 

professionals and staff of various flavours, with their respective responsibilities and agendas, 

volunteers occupy a significant and unique role. I was prompted to think about this in an 

inspiring conversation with the volunteer coordinator at the agency.  

It‟s not about [paying volunteers] because the minute I pay you, it changes the balance of 

the relationship from what you are able to have right now with the patients and caregivers in the 

building… and it‟s one thing that I hear from patients and caregivers all the time when I chat with 

them or when I see the comment cards that they write… how much they‟ve appreciated talking to 

                                                

44
 I have experienced a number of encounters at the agency where, in having been identified as a volunteer, 

I was addressed as such. There have been a whole host of reactions to this recognition of my position. In some 

instances, hospital staff had expressed appreciation for my efforts and welcomed my inquiries. In other instances, I 

was quite abruptly dismissed a person perhaps for taking up her time. I suspect that my apparent youthfulness also 

contributes to my being dismissed in some cases and that if I were wearing a white lab coat, things would be quite 

different. This entire train of thought makes me wonder if this inadvertent discrimination is also experienced by 

patients, that the way that they dress or appear may either advantage or disadvantage their care. I have certainly 

heard many young adults with cancer express anger in being dismissed by their medical care providers as not being 

sick, often leading to delayed and misdiagnoses. 



   

111 

someone who is “just like me. Just a normal person who is not here to poke me, prod me or 

document everything I say.” That‟s a real comfort to people that can‟t be done by anyone else.
45

 

 

Image 8. Excerpt from diary of a young woman with cancer. 

This is a startling reminder of the privileged position occupied by unpaid HCPs who may 

offer support not because it is in their job description or that they have to, but that they want to. 

Such optics make a world of a difference to patients and their caregivers.  

3.3.5 The many faces of care providing. 

So, who are HCPs? As suggested by the preceding stories and comments, perhaps anyone 

can be a HCP. Anyone can provide some care or support or willing ear to a patient or family 

member that will provide them comfort, relieve their anxiety, reduce pain and suffering. Anyone 

can be a HCP. Volunteers and family members may in many ways provide a quality of support 

                                                

45
 Similar sentiments of appreciation were expressed for peers in support groups. At these gatherings, they 

found support, willing listeners and normalizing experiences, all free from the loaded relationships and expectations 

of their “real life”. 



   

112 

and comfort to the patient that no paid staff member ever could. For me, this point was 

powerfully reaffirmed on a sunny morning volunteering in the Chemotherapy waiting room. 

Field Notes 2010-07-15 

A patient asks me about head coverings. She seems of South Asian ethnicity. They‟re 

free to take, I respond. Having dug through supply, she‟s disappointed by lack of cotton coverings 

with a rim. They‟re mostly knitted. Either too warm for summer or lacks a rim. I tell her I‟ll look 

around. She thanks me for my kindness. (It feels sincere. I‟m struck by how nonchalant she notes 

she is going to lose her hair. I guess there‟s a time when they go through realization which 

happens before we meet. I wonder what that moment of realization is like.) 

When I come back from search, I find her with another woman engrossed in a 

conversation about head coverings like they are the dearest of friends. (How odd. I think about 

how a waiting room is usually like most other public space in this city. People keep to themselves. 

Here, people usually come with friends or family, leaving only the volunteers and nurses as the 

only outside people they connect with. I wonder what‟s caused these two women to connect. 

Maybe it has to do with some part of their chemo/cancer experience like losing their hair. 

Commonalities, perceived shared culture bring people together. I wonder how distant patients 

feel from the rest of us.) 

What strikes me about this scene is not just that this woman had connected with another 

patient in the waiting room but that she spoke so plainly about losing her hair. As studies have 

uncovered, hair loss for cancer patients is often intimately tied to one‟s body image and self-

esteem (Bello & McIntire, 1995). Some patients experience it as a loss of their gender identity, a 

very distressing moment in their treatment. As this woman spoke of her impending hair loss with 

such normality, I try to imagine that significant moment in her life when she did have to confront 

her hair loss, cancer diagnosis or any other devastating change due to the illness. And then, it 

suddenly occurred to me. I was not there. I was not present in her moments of greatest despair. I 

am only part of her life for this one fractional moment. How could I ever expect to understand 



   

113 

her experiences or to help her in her moments of despair? I try to imagine myself not as a 

volunteer, but as a paid HCP like a counsellor or nurse. The conclusion remains the same. My 

encounter with her, this service that I provide is such a small part of the overall support that she 

receives.  

The thought is humbling. As a practicing counsellor, it reframes my perception of the 

value of my service or of me in relation to my client. It challenges me to look outside of me as 

the sole source of support for the client. This thought is as humbling as it is liberating, for in 

looking beyond our dyadic relationship, I discover a whole host of resources and support systems 

and HCPs.  

 

Image 9. Personal photo of public art entitled Echoes at Kitsilano Beach in Vancouver, BC. 

Journal Entry 2011-01-23 

The simplicity of the art was what struck me initially, it‟s straightforwardness, it‟s upright 

arrangement, nothing more than a bunch of chairs. No angle, no variety, no people to occupy 

them. My imagination began to fill the chairs with people, interactions and conversations. I began 



   

114 

to realize that each chair arrangement would reflects a very different way of relating to another. 

The side-by-side forward facing chairs suggest a very different relationship than the face-to-face 

chairs. The angled arrangement reminded me of an engaged but not confrontational relationship 

like in counselling, while the three chair arrangement feels very egalitarian and collaborative. It 

struck me how these interactions are reflective of the many different ways in which we may relate 

to each other.  

For me this art is about acknowledging and accepting such diversity. I think about how 

health care provision should be similarly perceived. We may position ourselves in relation to 

others we care about in a number of different ways. It is not to say that one is more valuable than 

another but that each serves a different function. 

3.3.6 Summary. 

Anyone can be a HCP. To me, the magnitude of this statement is not to be lost in the 

triviality of its kumbayah-like tone. This statement challenges my own notion of health care 

provision as an exclusive task or responsibility or skill of the salaried, job titled, licensed or 

trained. Instead, it is done by all. This statement legitimizes the impact of those who are not 

recognized, their work in merely being present or offering support, not only those providing 

treatment or distributing medication or diagnoses. In fact, the majority of the healing seems to 

come outside the institutional walls of funded, educated, structured cancer care. I for one had this 

attitude of viewing care provision as an exclusive task but that merely undermines and denies the 

value and impact of care provided by so many HCPs. It places a burden of responsibility on the 

professional or causes the professional to not look beyond his/her own surroundings for ways to 

relieve pain and suffering. A further consequence of this attitude was in denying my own 

contribution to relieving the suffering and isolation of cancer patients, as a researcher-listener to 

their story, as a volunteer supporter of their family members, as an advocate of their 



   

115 

underrepresentation and being overlooked. No longer will I wait for the day that I have a salary 

position or job title that “graduates or permits” me to be a cancer care provider.  

Whether we are the volunteers who help navigate a patient to their meeting during their 

first contact with the agency or the interpreter who bridges a language divide that robs 

individuals of their voices or the volunteer who provides information on driving services or the 

researcher who is unconditionally curious about the experiences of their participant or the 

oncologists who formulate treatment options, we are all HCPs. 

Everyone is a HCP. This statement is not merely about making everyone feel good. 

Rather, it is about liberating, empowering and giving responsibility to the masses. Despite our 

social inclination to legitimize the institutions, the funded, the professional, the titled, it is 

worthwhile to fight back and to acknowledge the value of the countless others. Otherwise, it is 

doing a disservice to those we strive to care for. 

3.4 Conversations with Nímāmā 

3.4.1 Juxtaposition of our two realities. 

Field Notes 2010-10-07 

I‟m sitting in the lounge. It feels more busy than usual. A family with two young children 

sit quietly in one area. The girl gets up, tries to do what she can to entertain herself in the small 

space. She charges for a few steps and tries to slide as far as she can across the floor. She tries 

again, trying to get farther. And again, and again. She delights in trying, not so much in 

succeeding. (I can‟t help but laugh watching. It lightens an otherwise sombre atmosphere. I find it 

to be a strange juxtaposition, that amidst people fighting and on the brink of death that there 

exists the sound of a young, innocent little girl, giggling with playfulness.) 

 Nímāmā, isn‟t it so very strange, so very incomprehensible how these two realities can 

co-exist. This weird or even twisted juxtaposition of health and sickness, of life and death, of 



   

116 

innocence and a loss thereof confuses me. How is it fair? How is it fair that you must bear pain 

and suffering while I carry on in freedom and health? Whereas you confront death, I will live on. 

In spite of circumstances that have brought us together in the final months of your life, life, you 

continued to care for those around you, while I remained ever self-focused and reflective of my 

own needs. How is this fair? 

 In these moments of sober reflection, I recall the stories of the young adults with cancer 

that I have met, their recounts of life interrupted, of normalcy lost, of potential unrealized, of 

plans shelved, of life‟s natural order disrupted, of being left behind by the world.  

 

Image 10. Excerpts from diary of a young woman with cancer. 

A diagnosis of cancer can be life transforming. Some also continue to persevere in the 

face of their illness, to refuse to succumb to “practice dying”, to retain some sense of normalcy 

as though “it‟s all good” (Salsman, Garcia, Victorson, Brockstein, & Cella, 2011).  

Field Notes 2010-07-15 

As I wait for the elevator door to close on the ground floor, a tall and slender young 

woman slips in. She‟s dressed in a t-shirt and running shorts with a hydration pack strapped 

around her waist. She is wearing a hat which covers from sun. (I wonder what department she 



   

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works in. Maybe one of those health-conscious, athletic nurses who doubles up exercise and 

getting to work. I then notice the scarcity of hair underneath her hat. She‟s a patient! Oh… Just 

coming in like any other person, doing whatever she needs to do now and then going on with rest 

of her day. It strikes me how cancer can be all encompassing, and yet for some, they persist in 

their day-to-day normal lives. I find that remarkable, admirable. I‟d like to think that that is what I 

would do if I ever had cancer. My god. That could very well be me, and yet, it‟s not me. I feel a 

sudden connection with this person. From one runner to another, I‟m saddened to think about the 

chronic injury that she has to run through. No amount of rest or remedies could ever remediate.) 

Nímāmā, how is this fair? I have struggled with this question much since our weeks 

together. How cruel life can be to inflict such suffering upon you and upon others – others like 

me who have left their home countries and find themselves in a foreign context, or others like me 

at my transitional stage in life – like the young woman of these journal entries or the runner with 

cancer. And yet, not me. Not me.  

Nímāmā, as much as our paths intersected during our life journeys, we were travelling in 

two completely different directions. I do not live in physical and emotional pain, restricted to 

certain rooms or certain activities. I am allowed to go free. Like a visitor to this eternal prison 

that you have to occupy, I moved on when my time was up. I returned to my humdrum life and 

studies, while you continued to fight, losing, weakening.  

3.4.2 Failing you. 

I am not sure if you remember the day when we watched a movie or rather, you watched 

a movie. I will always remember it as the one moment that I failed you so utterly. It was the first 

day we left the hospital and moved into Charlie‟s apartment. I remembered it was a warm and 

sunny day. It felt good to be leaving the coldness and sterility of the hospital, to be going home. I 

remember you took up the spare bedroom beside the kitchen. Your bed and a big flat screen TV 



   

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were unpacked from your move from Michigan but the rest of your worldly belongings remained 

in boxes, stacked up in the living room wherever there was room.  

There was optimism in the air, or at least there was for me. Your big sister, my Dàmāmā 

was coming to support you in a few days. I felt relieved. You‟d finally have someone close to 

you, be with you in a way that I never could. We were strangers after all, connected only by 

blood and not by experiences or memories. I was your little eight year old nephew when we last 

met, when we first met really. Maybe this is how you would always see me. I am not resentful of 

that because I understand how I may always be the little boy to you. Our cultural location was 

just too separated. Young versus older, generational gap, gender gap, cultural expectations of 

aunt and nephew roles. I am, however, frustrated that I could not have been a support to you as 

an equal. Had I approached my responsibilities whole-heartedly and with the awareness that I 

have today, I would still have encountered a divide between us that I would not be able to bridge. 

I felt too different from you. I wonder if you felt that way about me. 

In spite of my own optimism and Dàmāmā‟s arrival, I know that it was probably quite 

unsettling for you to move into the same household as Charlie‟s partner, the one with whom you 

have developed such tensions and felt such vitriolic anger towards. I can only imagine how much 

it scared you to have her so close to you, how much it hurts to be reminded of her presence in 

your son‟s life. I imagine that that is why you resisted leaving the hospitals when the staff asked. 

They even urged you but you resisted. It strikes me now how unsafe that environment must have 

felt for you, whereas at the time, I felt an oblivious and blissful optimism. The twisted 

juxtaposition of your fear and my optimism. The cruelty of this divide between us. 

In spite of your lack of safety that day, you continued to project strength. You wore your 

mask of contentment so effectively that I forgot to take care of you. I forgot how much you 



   

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needed an ally, a companion and a connection to the world. Having been confined to a hospital 

ward and room for nearly two weeks, I had such pent-up and anxious energy: When I discovered 

the stationary bicycle out in the living room, I was determined to use it. At the same time, I felt 

uneasy for abandoning my mission to stay with you and keep you entertained. My solution was 

the large collection of DVDs. I could set up a movie for you and then go work off some energy 

on the stationary bike.  

I suggested watching a DVD. You agreed, smiling. I read through the familiar Hollywood 

titles. I had seen some of them but not others. I was even interested in watching a few of them, 

and yet I maintained my stubborn commitment to get on the stationary bike, to release my pent-

up energy, to exercise. I had decided that I would not watch the movie with you. I presented a 

number of interesting titles that you might like. We deliberated on each one, reviewing plots, 

discussing our interest in movies, past movies that we‟d seen. We agreed on Gone in Sixty 

Seconds, a car heist thriller with Nicholas Cage. Light-hearted, action-packed. A good escapist 

movie for the circumstances. You seemed pleased with the selection. Just set it up and back away 

slowly, make my unnoticed exodus. I remember that day, how you sat in your bed surrounded by 

a mound of blankets, the brilliant sunlight flooding through your windows. I thought that were 

comfortable and enjoying the movie. My conscience was eased as I sat out in the living room, 

expelling energy on the stationary bike. 

Then a phone call from Dàmāmā or another family member disrupted the movie. You 

talked on the phone, I came in to pause the movie, believing that you had wanted to but did not 

know how. The phone call ended, but you never restarted the movie. You could have. You could 

have restart the movie if you were really interested, but then you really were not interested in the 



   

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movie were you? Maybe you were never really interested. You were just pretending to entertain 

me entertaining you. Who was helping who? I was not sure what to make of it. 

The more I thought about it, the more miserable I felt. I had come all this way to support 

you, to take care of you; and all this time, you were actually taking care of me. In your weakened 

state, you continued to take care of me and my feelings, watching a movie that you were not 

even interested in just so that I could allow myself to do what I wanted to do. My guilt magnified. 

I was so conflicted. I wanted to be angry with you for tricking me like this, for not letting me 

help you; at the same time, I wanted to have admiration for your altruism. How could I have 

maintained anger towards you when your intentions were so good?  

Underneath this internal conflict, all I can think about is how I abandoned you in your 

moment of greatest need. When you felt most unsafe, I left you to attend to my own vanity. I 

regret leaving you for the stupid stationary bike. I feel guilty for being with you but resenting it, 

for not having committed myself wholeheartedly. I feel guilty for not being your companion, to 

help you maintain a connection to this world in your last moments of life. I feel guilty for 

surviving while you died.  

These days, my guilt sometimes moves me to tears. I even feel disgusted sometimes. I 

begin to loathe the person that I discover myself to be. As much as I want to think of myself as a 

good person, I am confronted by these instances of selfishness and am left wondering whether 

my self-conception is accurate or just a grand delusion. In providing care to another, will I 

choose to care wholeheartedly or just step back, distance myself and be driven by my own needs? 

I am afraid of what my answer might be, afraid that I may not be who I thought I was. 

Nímāmā, I know that you would tell me to not be so tough on myself; that you valued my 

presence regardless of what I thought I did wrong; that you appreciated me coming all the way to 



   

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Baltimore; that without me there, you would have had no one but yourself and that would have 

been infinitely more difficult. I know that you would say that to comfort me. That is the selfless 

individual that you are, someone with an extreme loyalty to your family and instinct to protect. 

You would try to protect me from my feelings of self-loathing and disgust.  

3.4.3 Protecting each other. 

I have been increasingly thinking about this idea of protecting others, about how we are 

all so predisposed to protecting those that we love from worries, disappo intment, sadness or pain. 

As you seem to have done for me, you protected me from your own fears of uncertainty. If you 

had known about my self-loathing, you would try to dispel that too. Even though you were near a 

breaking point yourself, you took on my burdens along with your own. You wore your mask of 

contentment to convey a strong image, all the while hiding the tremendous pressures and fears 

you must have been experiencing. Why did you have to be this way?  

This tendency to protect others has cropped up in a number of narratives.  

 

Image 11. Excerpt from diary of a young woman with cancer. 



   

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For cancer patients and their loved ones alike, this may be experienced as a very 

confusing reversal of roles. “What am I supposed to do? How am I to act around this person?” 

This young woman‟s journal entry could have easily been your words, Nímāmā. In seeing your 

family grieve for you and your suffering, your instinctual reaction was to comfort us, to stop the 

source of that discomfort. The source of our discomfort was in seeing you weak and distressed, 

and so for us, you protected us from yourself. You concealed that vulnerable part of you and put 

on your mask of strength. We also backed away from you to avoid further burdening you with 

our concerns and worries. We engaged in this dance of repulsion in spite of our best efforts to 

conceal our fears from each other and the so divide between us grew ever greater. To others, we 

remain ever together, and yet we cry in silence on the inside.  

I am reminded of a conversation I had with a young man about not crying after receiving 

news of his diagnosis.  

IYA:  Yeah! I was sad… but not crying about it. I don‟t cry a lot. And actually, I have problems 

crying. I wish I could cry more because then I think that would alleviate me, make all 

these feelings going away. But I don‟t.  

David: You try to not allow yourself to feel sad. 

IYA: Yeah (tentative) I think, I don‟t want to because I know that if I feel sad, I know that [my 

partner] will cry more. He‟s always crying, so I try to protect him, not crying in front of him. 

But at the same time, we had a conversation a while ago that I want to cry more […] I told 

him, if I start crying, you don‟t need to come and help me. Let it come out first, and then 

after, you can help me because if you make me stop, it will be worse. Then I will stop, 

and then the tears won‟t come anymore.  

David: So you mean if he tried to help you or if he cried himself, then it would be even worse for 

you? 



   

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IYA: Yeah, yeah. I think, I think so cause then I would stop. If I see him crying, I would stop 

crying and try to… make it easier for him. And if he comes and just tries to support me 

without crying, I think that would make me stop crying because he‟s trying to stop me, 

and the feelings won‟t come out all the way, would stop half way through. So I think it‟s 

better to let me cry and let all these feelings cause I won‟t cry forever. One day it‟ll stop 

right? Maybe half an hour of crying will be enough for me and then it will stop and then, 

and then he will come and help me, and then it will be fine. I think that that way will work 

better for me.  

David: Just to let you have your moment. 

IYA: Yeah (laugh nervously), but it hasn‟t happened yet.  

 He goes on to identify the “weirdest” and rare moments when he does find himself being 

moved to tears. Each of these moments, such as in watching a documentary about his career 

passion or hearing a support group member‟s story
46

, were moments of sadness for others. It is as 

if grieving for others is safe while grieving for oneself is not. The latter can only cause hurt to 

self and others, whether that may be in reinforcing one‟s own discouraging circumstances or in 

making others worry about us. Vicarious catharsis, for lack of a better term. 

                                                

46
 The value of peer support groups was commented on by many in the young adult cancer community, 

from patients to health care providers. This seems to make sense I considering that young adulthood are 

transitioning from a life stage that places immense priority on social relationships and a sense of belonging. Several 

young adults with cancer commented on how these forums allowed them to share openly with peers, a rarity given 

that they experience themselves as a significant minority in a cancer care system that is largely geared to serving an 

older demographic. Two HCPs observed the immense relief that young adults seem to experience in stepping out 

from behind the mask that they put on to exist in their day-to-day life. It can reduce pressures in their day-to-day 

social spheres. Young adults find significant common ground in their shared experience of cancer despite 

differences in language, experience and cultural identifications. For immigrants in particular, support groups may 

serve as a community that they are lacking.  



   

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I was struck by the clarity with which he sees his circumstances, the openness of his 

conversations with his partner about crying. In spite of these pieces being in place, his moment 

of alleviation remained ever elusive to him. There is sombreness and pessimism in the story 

going forward. “… but it hasn‟t happened yet.” Will he find his moment of relief soon? Will he 

find it ever? 

 Nímāmā, if he was unable to reach that point of emotional honesty and relief with the 

level of awareness and openness in his relationship, I am humbled to think about the 

insurmountable barrier that we faced. I was your eight year old nephew and you were my aunt, 

the second oldest of my dad‟s siblings. Consistent with Confucian traditions
47

, we were cast into 

our social roles, you as the perpetual care giver and me as the child in need of protection. 

 In the end, this divide between us comes about through our instinctual desire to protect 

our loved ones. I find myself falling into this trap. After my recent bicycle accident, where I 

crashed into the back of a truck at high speeds, lost consciousness and was carted to the hospital 

in an ambulance, I refrained from telling my parents until I was asymptomatic and fully 

recovered from the event. I did not tell them because I did not want to worry them. They are so 

far away that there was nothing that they could have done anyway. Given that we only connect 

now via Skype, I know that telling them what happened would have just filled their days with 

worries and a sense of helplessness. The analogy may be draw for many, especially for 

immigrants with cancer whose loved ones may be far away. Our tendency to protect others 

resurfaces, in this case from their feelings of worry and helplessness. It was a simple decision for 

me at the time, the most course of action that would yield the greatest benefit and least cost. 

                                                

47
 Confucianism is considered to be a system of teachings that reinforces existing social hierarchies 

(Dawson, 1981). Its influences are noted in both ancient and modern day China. 



   

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 I shared all this with a colleague recently. He was surprised to realize how well I had 

keep this serious accident hidden from him. I had put him in a similar position as my parents, not 

letting him know until long after the incident had lost its potency to cause worries. He wondered 

out loud how I might react had I been in my parents‟ position, perhaps if my dad was in a serious 

accident and I was not made aware until long afterwards. I found myself stunned by the thought. 

I would surely want to know, even if it caused me great distress.  

I imagined the reactions I would have. I would probably be outraged and resentful in 

being left in the dark. Why wouldn‟t they just tell me? Underneath my anger would be a fear 

perhaps in being reminded about the mortality of someone I care deeply about. If they hid things 

from me, I would begin to feel uncertain about our relationship, about whether it was as honest 

and open as I thought. It would have chipped away at my security in the state of my relationship 

with my parents. I began to imagine a divide appearing in my relationship with them. I imagined 

myself becoming distant from them. All of this fell out of their well-intentioned desire to protect 

me. It was a simple conclusion and yet one that was hidden behind my good intentions, my 

hypocrisy. 

3.4.4 Trying something different. 

As I had expected, when I eventually did tell my parents about my accident, my mom 

expressed some restrained frustration and ongoing worry about my well-being. I reassured them 

that everything was all right and we moved on. I was relieved that more was not made of the 

incident and that my decision to wait to tell them worked well. In hindsight, I wonder how much 

this delayed disclosure also caused them the anger, fears and insecurities that I had experienced 

in my imagined scenario. I am disappointed that even now, I may have caused them pain even in 

these moments.  



   

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A few days later, something surprising happened. My parents called. They expressed a 

desire to purchase disability insurance for me. I felt uneasy. They provided arguments of its 

worth which I heard but had a hard time taking in. Preparing for my own mortality was 

something that I had rarely if ever confronted. Nobody wants to think about life and disability 

insurance. The thought of preparing for our own end seemed perversely self-condemning.  

These thoughts rattled in my mind as my parents continued their many rational arguments. 

“Insurance is about buying peace of mind.” “You would have income to live on just in case 

anything was to happen to you.” “It doesn‟t cost that much.”  

Then something different. “In case anything happens to us, we‟ll know that we‟ll always 

be taking care of you no matter what happens.” Her words hit me like a tidal wave. “…we‟ll 

always be taking care of you.” I had no words. My body began to shiver. I fought back tears over 

Skype‟s faceless interface. For a long moment, there was silence and yet, a whole lifetime of 

communication was taking place. 

 

Something important occurred to me that day. Had I chosen to never share my bike 

accident with my parents in order to protect them from their worries, my life would never have 

amounted to that day. That day, I was awakened to the depth of their care for me. I was reminded 

of how much their presence is important in my life. It brought our relationship closer together. I 

examine other relationships in my life, like the illusive and distant relationship I have with my 

dad. The way we have related to each other for much of our lives revolved around maintaining 

harmony and protecting each other's feelings. From this, we have remained emotionally distant. 

Then there was our relationship, Nímāmā, the way we kept away from each other. You were 

locked in your care giving role as my aunt, and I was ever fearful, handling you with care. 



   

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Whereas our instinct to protect others creates a great divide between us, our “gifts of pain” bring 

us closer together.  

3.4.5 Protecting ourselves. 

What keeps us from realizing this gift? Maybe we are protecting each other. Maybe we 

also protecting ourselves. From what? From the care of others, from their rush to action. I am 

reminded that I often keep things from others because I do not want to be blamed, criticized or 

nagged. In the case of my bike accident, I had predicted that had I told my parents about the 

incident, I would have been verbally bombarded with a host of advice, suggestions and warnings. 

Have you ever experienced this, Nímāmā. Knowing our family, you probably have. I imagined 

that you might be as averse to people‟s misplaced and inappropriate advice as I am.  

Maybe not though. I acknowledge that as an immigrant young adult who has come to 

greatly value my self-sufficiency, I react quite strongly to my parents‟ even well-meaning 

support. I perceive it as an attack on my very identity as a young adult.
48

 I resent them for 

holding me back from becoming successful in life. My frustration and resentment becomes 

directed at them. Indeed, resentment and anger towards my parents were themes that dominated 

much of my late adolescence and early adulthood. Their advice often came across as imposing 

and restrictive, rather than supportive to my growth.  What is more, I dismiss their advice 

because it does not fit my circumstances. I think in my mind, yes, that would work for you but 

                                                

48
 I wonder how pervasively this is also experienced by young adults with cancer whose illness forces them 

to receive support and care from their family. I would imagine that it is a conflicting experience to accept support 

that they very much need and yet feel as though they are giving up their identity as a strong and self-determined 

young adult. Maybe some will also, like me, develop resentment towards their well-meaning loved ones who seem 

to be the source of their regression in life development. 



   

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not for me. Given their strong identification with their parental roles and resulting fears and 

yearning to help, they would quickly jump to problem solving mode. I would in turn be left 

feeling let down by them, wondering if they had even heard how much the experience had 

affected me. This is often all that I truly want from them, to be heard. Is that not what everyone 

wants? I am quite capable of reflecting on the past and taking prudent actions for the future. All I 

want is to share with them my life, be heard and understood.  

Given my past disappointments in sharing my experiences and not feeling heard, I 

became cautious and even avoided sharing as I did about my bike accident. It is a simple process 

of behavioural conditioning (Skinner, 1990). Behaviours that are followed by adverse 

consequences are extinguished over time. Subtly, the divide between us widens. 

Recognizing the value of sharing in bridging interpersonal divides and forming strong 

relationships, how then could I have done things differently for you, Nímāmā? For my future, 

how can I as an emerging HCP encourage sharing and connecting amongst those I care for? 

What I want for myself, I will try to provide others. A willingness to listen, without judgement, 

without conditions, without a compulsion to respond.  

3.4.6 Someone who is simply present. 

In my role as a volunteer, I have learned much about how to be comfortable just being 

present.
49

 The disposition to simply be present with patients and family members seems to be 

embedded into the cultural norm of the volunteer role.  

                                                

49
 The commitment to simply be present remained a challenging one despite my four years of clinical 

training in counselling psychology. I was quite surprised by this given my discipline‟s commitment to the theoretical 

orientation of humanistic psychologist, Carl Rogers, whose principles of genuineness, empathy and unconditional 

positive regard in essence describes the commitment to be present and bear witness (1957). Perhaps this speaks to 



   

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Journal Entry 2010-04-15  

As part of my cancer agency training to be an inpatient volunteer, I have been attending 

an extensive four day workshop offered by Vancouver Hospice Society. One of today‟s topics 

was on being present with someone. One handout read, “In this work, it simply comes down 

sooner or later to how comfortable we are with ourselves, with others, and with the whole idea of 

dying, because often working with the dying involves more „being‟ than doing.” 

Acknowledging that those we care for may not always be able to respond, the facilitator 

guided us through an exercise in approaching and being with someone who is asleep. Go in, 

speak to the person as though they can listen, announce that I‟d like to sit with them for a while 

and then just sit there, being fully present, feeling their existence. At the end of five minutes, we‟d 

get up softly announce our exit and leave. The experience felt awkward, almost embarrassingly 

mystical. There was even some discussion afterwards about spirit, energy and connection. I am 

usually quite open-minded about these things but the idea of sitting with someone who may not 

even be aware that I am there sounds somewhat futile. 

 

 

Image 12. From “Volunteer Handbook: A Guide for Volunteers," by Volunteer Services, 2009, p. 21. 
Copyright 2009 by Volunteer Services. Reprinted with permission. 

 

 

                                                                                                                                                       

the cultural norms of the counselling profession where an aim for growth and healing creates pressures for 

observable change within the boundaries of the therapeutic encounter. Being a volunteer has taught me how to 

simply be present with someone that I was unable to experience in my professional training. 



   

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At first, I found these norms overly restrictive and disempowering. I believed that 

volunteers were capable of doing so much more than this. It seemed as if we were just divesting 

responsibility and liability in a way that lacked compassion for those we cared for. What I am 

able to better appreciate now is how the most compassionate act may be in just being present. 

Field Notes 2010-12-02 

I head for the room belonging to the Chinese patient that the nurse suggested. It is a 

single room. The room is dark with the window blinds closed. The privacy curtain is drawn around 

the bed so that those in the hallways cannot see directly into the bed. I have to fully enter into the 

room before I am able to see him. He is hidden behind the curtain. He is sleeping, his blankets 

tightly bound around him. It is as though he is in a cocoon, enveloped, protected, body 

undergoing some process of metamorphosis though unlike for the emergent butterfly, this being 

is undergoing a process of degeneration. We are trying to slow it but can‟t. I notice his position, 

turned away from the hospital and towards the window as though he is saying, “I don‟t want 

visitors.” I look around and see no sign of visitors. I feel saddened.  

Still asleep. I leave, disappointed and burdened that I was not able to bring company to 

his isolation, comfort to his life this day. […] 

I go back a second time, committed to connecting with him. He still looks asleep, but I‟m 

persistent this time. I make some noise with my shoes. It works. His eyes open. He notices me. I 

smile hoping I didn‟t freak him out. I offer my invitation. He makes no response but looks at me 

curiously. Ah, there may be a language barrier between us. I rephrase my invitation, then a 

second time. I am persistent, maintaining a smiling, gentle expression. I want to convey 

compassion, care, hoping that he will accept my offer. He nods his head. I‟m unsure whether it is 

in consent or in affirmation, the way someone does naturally as a gesture of politeness. I check 

again to making sure, worried that I may impose myself at his discomfort. “Can I sit in this chair 

with you?” He nods his head. I hesitate, still unsure, but I sit down.  

I take a deep breath, a breath of accomplishment, a breath of relief in having reached a 

new stage. I sit with my back to the window, looking back into the room, towards the bed, 



   

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perpendicular to it. I do not stare at him, just at the bed, the covers. I feel no compulsion to 

immediately start talking. His expression doesn‟t seem to give an invitation to want to talk. He can 

initiate if or when he feels comfortable. I will just be with him today.  

I take a moment to reflect on my surrounding, regulating my breathing to adjust to this 

new position. I peer out of the corner of my eyes at him, his eyes are open, staring off into space. 

We sit there in silence. I hear the sounds of nurses engaged in discussions out in the hallways, 

the movement of the caretaking staff preparing the bedroom next door for a new patient. Beyond 

that there is silence. I wait. I somehow feel patient, at piece today. I feel no compulsion to leave at 

the earliest opportunity. (This is a strange experience. Why is this so? No need to leave till much 

later on so I have time for once. It feels good to have time, for the patient and for myself. I also 

feel especially committed given the life history that I‟ve projected onto this individual, the 

background that I imagine we share.) 

 “You speak Chinese?” he asks suddenly and in tentative, court English. 

“I do,” I answer, eager for contact and for this commonality. I switch over to Mandarin 

repeating that I can. (The broken Mandarin that I have been left with after years of growing up in 

an English context. I lament my fading language skills, what could have been. These encounters 

remind me about what I have lost. I am filled with sadness in having lost such a big piece of my 

childhood.) He doesn‟t respond immediately.  

He asks me in English if I speak Cantonese.  

“I don‟t,” in Mandarin. (I‟m disappointed by the missed opportunity to connect on this 

front.) “Do you understand Mandarin?” I ask in Mandarin. 

Yes, he responds in tentative Mandarin. From this, I sense that this is as far as he may 

comfortably proceed in Mandarin. 

In English, he asks me what I do. 

I tell him that I am a student at UBC. He nods his head in understanding, but more so in 

approval or admiration, the way our overlapping value systems put education in high regard. 

“Ah, so you must be very smart.” I immediately and politely laugh it off. I tell him that I am 

from the East Coast. Our conversation turns to weather, coldness, how nice it is in Vancouver. 



   

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He coughs suddenly, not heavily but enough to cause his body to convulse. I remark his 

cough and that it must bother him a little. “No,” but rather than continuing on, he pauses for a 

moment (seemingly thinking about his coughing or sore throat) and an expression of annoyance 

or disgust emerges on his face. He corrects me. “Not a little, a lot cough.” I check whether he 

needs water. He doesn‟t. He is okay. I resume my position in the chair.  

He asks more questions. I openly answer, careful to my use of words. After a few 

exchanges, the conversation reaches a natural lull. I have answered his questions. He has no 

more for me. There is silence. (I feel at peace with the silence. My mind is not racing to fill it with 

my own questions. I am aware of my reluctance to burden him, to barrage him with questions as 

though I‟m an interviewer or interrogator. I recognize that because of his challenge with English, 

my questions would cause more discomfort than anything. I am therefore comfortable with the 

natural lull that we have arrived at. My goal is not to make conversation but to communicate an 

unconditional acceptance of him and willingness to be here. I believe that he understands. I don‟t 

know why I believe so.) And so we sit, I comfortably. (I am not sure whether he shares my 

comfort with the silence, whether he is relieved to not have the burden of language to deal with 

another‟s presence. I sense that this is the case, that he too is comfortable with the silence as he 

does not hastily try to fill the silence with more questions.) I stare across the bed to the wall at the 

other side. Occasionally, I sneak a peek at him. His eyes just stare off towards the ceiling, 

towards something. (I wonder what it is that his mind‟s eye is staring at.) He seems calm, not 

anxious. His mind does not appear to be racing in thought. 

In the silence, I hear laughter. Two staff are joking about an upcoming event. The levity of 

that mood is juxtaposed against the peace. Yes, it is peace that exists here. I feel irritated, that 

our peace is being disturbed, violated, infringed upon by their levity.  

I stare out the corner of my eyes. His eyes are still open, still starring upward, towards 

something. (I wish I knew what.) I check periodically. At one point his eyes close. He is asleep, 

not just resting his eyelids. I remain in my seat, feeling no compulsion to use this as an excuse to 

leave. I feel no compulsion to leave. Rather, I feel that it is just right, right for me, to remain 

present while this person sleeps. This is my task for today, I acknowledge to myself. This is my 



   

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contribution to this man‟s life. In this moment, I feel proud to have this task. I feel uniquely suited 

to do so.    

I feel the ambiance of the room. I sense a connection with him, perhaps not in spite of the 

silence but due to the silence.  

After some minutes, my attention begins to focus outward. I go from being the participant 

to the observer.  I note the colour of the walls, the scribbles on the board, the nurse‟s name, 

emergency contact number, his shoes neatly placed on the floor against the wall so that it does 

not get in people‟s way. I become aware of how bare the room looks. (No one seems to live here 

or call it home. I wonder if he feels at home here or if this is a foreign environment to him. It 

strikes me how there exists a tension living in this space for the patient. Should I set roots down 

in this space, try to feel comfortable, at home, in spite of the circumstances. Feeling at home in 

this space almost seems self-condemning. The alternative would be to remain detached from the 

space, to allow it to maintain its bareness, its lack of a personal quality. Both alternative are 

undesirable. How uncomfortable of an existence this must be.) My mind returns to him. I wonder 

if he perceives himself merely as a visitor here, a sojourner. 

I return to my completely present state, starring at the wall across the bed. Minutes pass. 

My eyelids become heavy. I fight to keep them open. Frantically, I refuse to give into my tiredness, 

to make it possible for him to open his eyes and find mine closed, uncaringly closed. I do not want 

him to feel uncared for. I want to demonstrate my full attention, my unconditional acceptance of 

him. I do not want him to believe that I am bored or want to be somewhere else. My eyelids 

become increasingly heavy. I notice myself drifting in and out of consciousness. […] 

I awaken, startled to the sound of a nurse in the room. Luckily, I regain my senses before 

he does. […] The nurse leaves. The silence returns. I sit, not wanting to initiate the discussion, 

not wanting to burden him with my questions, my demand for language. 

I am now becoming aware of the passing of time. I glance at the clock every minute or 

two, realizing that now I need to go. I have a research interview. I try to sit patiently, but now I am 

no longer able to. I contemplate in my mind how I can leave without disrespecting this individual. I 



   

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consider just leaving. No. I decide to make some noise again to get his attention and tell him that 

I am going to go and come back. 

“Go,” he says quickly. (I wonder if I have offended him, that I gave him the impression 

that I was plotting to abandon him all along. But I don‟t, I want to reassure him, yet I say nothing. I 

wonder if he has understood anything of what I have thought. Perhaps not. I leave, feeling 

uneasy, uncertain.) 

In this encounter, I was deeply committed to just being present with him. As I reaffirmed 

to myself on several occasions, I simply wanted to communicate my unconditional acceptance of 

him and willingness to be there. In a somewhat ironic way, the language barrier between us 

seemed to free me from the obligation to fill in the silences with idle conversation.  

On several occasions, however, I fought back the urge to pull out a notebook to capture 

my experiences in the moment. In the end, I became distracted by my limited time and other 

obligations. Even with the freedoms from responsibility afforded me as a volunteer, my other 

roles as a researcher and as a student permeated into this peaceful space and challenged my 

ability to just be present. This is a sobering thought. I wonder how many other HCPs hurry about 

with their tasks, not attending to their patients‟ fundamental need for human presence, to be 

heard and understood? Perhaps, like me, they have a commitment to this and yet the expectations 

imposed upon them by their job, their system, their institution derail even the most fervent 

commitment to just be available for someone.  

Then again, I imagine that others may simply not share my acknowledgement of the 

immense value of bearing witness to someone‟s joys and sufferings. It is perhaps easier to make 

such a claim when amongst a group of counsellors, whose forefathers of Freud and Rogers 

modeled a comfort in just being present. Amongst other professions, where success is framed in 



   

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terms of reduced physical discomfort, hospital utilization, and survival and mortality rates, such 

an acceptance of a patient‟s anger or misery would seem quite absurd or superfluous. 

Whatever our professional aims may be, being present for another is a gift that is often 

undervalued. Both volunteers and peer support group members seem to be valued within cancer 

care for their very unique role in simply being with someone. As noted by the volunteer 

coordinator, patients and family members express appreciation for having a volunteer just be 

present for them, to hear and understand their experiences. Often, volunteers provide this form of 

comfort in moments or places where no one else could or would, such as in a lounge or while 

waiting for an appointment with a medical staff. Likewise, young adult cancer patients have 

identified groups as being a valuable part of their support network. As many group practitioners 

have pointed out (Westwood & Wilensky, 2005; Yalom, 1998), one of the primary therapeutic 

functions of groups for group members is often in being witnessed in ones journey of struggle 

and growth. Through group norms of non-judgmental listening and a disposition to shy away 

from giving suggestions, group members are able to simply witness, hear and understand. 

3.4.7 Courage and strength. 

As I think about the value of just being, it occurs to me that it takes tremendous courage 

and strength for care providers to adopt such a position. In relationships that I value, such as with 

my parents, I have a hard time resisting my temptation to solve problem. Admittedly, I often find 

myself providing unsolicited and inappropriate solutions rather than simply listening and 

understanding. I feel compelled to respond in some way because I care, and yet all the while, I 

disempower them. I dismiss their capacity to come up with their own solution that fits for them. 

Like handling someone with care, I care so much that I rob them of their ability to handle it.  



   

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Therefore, it seems to me that it takes tremendous strength to bear someone‟s pain 

without moving to rescue them or relieve them of their suffering. Often, such inaction goes 

against my deepest instincts to love and care, and yet it may be the most compassionate act of all.  

My parents had struggled to find the strength to just accept my bike accident. It was only when 

they stopped imposing solutions and spoke to their own experiences and fears that I felt a 

connection with them that brought our relationship closer together. This, in turn, gave me a sense 

of reassurance that I could share with them in the future. As such, being present seems to create 

an environment where interpersonal divides are bridged rather than widened, and relationships 

are strengthened. 

Nímāmā, as much as I can convince myself through these arguments, how could I ever 

feel at peace having simply been present with you. I am still haunted by the sound of your crying 

in the middle of the night. You were alone in your bedroom while I remained awake outside, in 

the living room. Yes, I witnessed your pain in those moments, but not out of courage. I did so 

because I did not know what else to do. I was not sure what else to do. I had left you in your 

room to watch the movie all alone because I did not know how to be in sitting with you. The 

nervous energy that I was so eager to expel was perhaps from being witness to your pain and yet 

feeling paralyzed, not knowing what to do to ease your suffering. During those days in the 

hospital, I just wanted to look away and leave that hospital setting. I wanted to leave that world 

where cancer, pain and suffering existed. I was scared and did not knowing what to say. I was 

afraid to get close, to touch, to drop, to break you so I put on my mask. I was not strong enough 

and unable to bear witness to your pain. I ran away from you in the same way I ran away from 

one individual at the cancer agency. 

  



   

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Field Notes 2010-10-07 

Noises, cries, painful grunting from within. I notice the sign on the door. “Restricted 

Access.” (It creates the impression of a movie scene. Some untold danger beyond. I cautiously 

peer in. A single bed deep inside the room. It seems so far from the doorway. A man occupies it, 

turned away from me, face not visible. His body is hunched, lurching, contorting, clearly in pain. In 

solitary, last room at the end of a hallway, far away from the nurse station, other patients and any 

compassionate ears, I find it difficult, heart-wrenching standing here in my serene comfort, 

witnessing his pain and suffering. It‟s like watching a war prisoner being gruesomely tortured to 

tell some secret. I‟m filled with despair and pity for him. Part of me wants so much for him to tell 

his secret, to give up to the torturers, but he refuses to. As if he is able to. If only he was able to.  

Help! Help! I want to cry. I look back down the hallway. The world is still the same. No 

alarms, no screams. No one is rushing towards us. The normalcy makes me accept this torture, 

accept that people are suppose to suffer. I move on, refusing (By doing nothing, have I become 

an accomplice in this man‟s torture and perhaps death.)  to be a spectator in this man‟s torture. 

I have been haunted by the image of this man‟s screams and contorting body. “be a 

spectator in this man‟s torture.” A striking choice of words. Why torturer? Why implicate myself 

in his suffering? Now, I recognize that that person in the room was you and I did see myself as 

your torturer. I was too cowardly and weak to just stand there, to bear witness to your pain, and 

so I ran away. I abandoned you and so I hold myself culpable. Even now. I regret that I did not 

stay. I regret that I did not share my fears with you. I regret that I did not tell you that I was there, 

that I had witnessed your pain and suffering. 

3.4.8 Your gift of pain. 

Journal Entry 2011-03-13 

Nímāmā, today I thought I heard your voice. I thought I heard you speaking to me. I was 

working on this thesis. Music was playing in the background. The familiar and lulling melody of 



   

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Michael Jackson‟s You Are Not Alone came on. As the song progressed to the chorus, I was 

startled by the sound of your voice. You were speaking to me. 

 

Chorus from Michael Jackson‟s You Are Not Alone 

♪♪ That you are not alone 

I am here with you 

Though you're far away 

I am here to stay 

But you are not alone 

I am here with you 

Though we're far apart 

You're always in my heart 

 

This song has always had special meaning for me. It is a dialogue between two voices: 

one represented by the verses, sad and lamenting; the other represented by the chorus, 

reassuring and comforting. I always thought of myself as the comforter, the care provider who 

reassures that you, Nímāmā, are not alone. Today, as I listened to this song, I heard your voice in 

this chorus, not mine. You were the reassure, the comforter. I was the lonely one. And with that 

shift in frame, the song felt so very right.  

As I reflected on the words with newfound clarity, I noticed a void within me that I‟d never 

noticed before. “♪♪You never said goodbye, someone tell me why.” I was overcome with sadness. 

My body convulsed like some coldness had filled the room. But it wasn‟t coldness. It was warmth. 

“♪♪Though we‟re far apart, you‟re always in my heart.” I felt your presence and your voice 

comforting and reassuring. You were telling me to forgive myself. You were asking me to let go of 

the critical voice that resides in me.  

So I cried for you today, Nímāmā. I cried in sadness for your pain, the worries that filled 

your sleepless nights, your isolation from those around you; your life unlived, your potential 

http://www.youtube.com/watch?v=D2jSiY-Vo8g


   

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unrealized. But then, I also cried for myself today. Crying for the regret I feel about all that I did, 

all that I was too scared to do and the guilt that I have carried for so long.  

Today, I have come to a sense of acceptance of my role in your life. I acknowledge the 

value that I may have had in just sitting with you during those weeks together. For a long time, I 

regretted not having done anything for you. Then again, maybe that was the most compassionate 

act of all, to simply be present for you, to hear and understand you. I want you to know that I did, 

that while I had left you in your room to watch the movie, my thoughts were still with you. Even 

though I was too weak to handle my own fears and to remain close to you, I tried the best I could. 

I wish I had told you this, but maybe you already know. I hope you knew. 

As much as I was frustrated by the divide that was between us, I‟m trying to accept that 

these were the circumstances that were laid out for us, the cultural locations that we occupied. 

We began as strangers to each other, connected by blood only. I was your nephew, you my aunt. 

I wanted to be your protector, your care provider and when I felt myself being unable to do that I 

became frustrated and blamed myself for my failure.  

“♪♪Your burdens I will bear, but first I need your hand.”  

I was resistant and resentful of your protection. It made me guilty to think that on top of 

the burdens that you bore, you also had to bear mine. But then, that was my mistake because 

you were also my protector, my care provider. You modeled someone who is ethnically Chinese, 

and yet much more. You gave me permission to feel comfortable and not ashamed with my own 

Chinese-ness. You have given me a gift, the gift of pain.
50

 I have come to understand how the 

sharing of pain although scary can bridge interpersonal divides and bring people closer together. 

Over this journey of being a researcher and care provider, I feel much more connected to you as 

a result of the pain that we have shared.  

So I guess I cried for the both of us today, but rather than a cry of sadness or pain, 

maybe it was more so in remembrance of the past and in marking a new beginning. 

                                                

50
 I was drawn to this idea that pain can be a gift. It was the theme of a documentary I came across entitled 

The Gifts of Grief (Sobonya, 2005). 



   

140 

 

 

 

 

 

 

 

Poem 40 (Rumi, 1974) 

I saw grief drinking a cup 

of sorrow and called out, 

"It tastes sweet, does it not?" 

"You've caught me," grief answered, 

"and you've ruined my business. 

How can I sell sorrow, 

when you know it's a blessing?"  



   

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CHAPTER 4: CONCLUSION 

Through the ebb and flow of this research journey, the question that emerged as being 

most relevant to me was “How do I understand my role as an emerging HCP for immigrants and 

young adults with cancer?” My journey has brought me to speaking with individuals living with 

cancer and their care providers, to examining my cultural location and that of the other, to 

reviewing the scholarly literature and other textual materials related to cancer care, to being 

immersed in the cultural context of the cancer agency, and to reflecting on my own experience as 

a care provider for my Aunt Nímāmā.  

At this point in the thesis, I feel greatly tempted (or perhaps obligated) to draw broad 

conclusions, or make bold claims and premature recommendations about the implication of this 

research. Admittedly, in this institutional context, doing so may somehow legitimize this 

research inquiry. I am, however, rather reluctant to prescribe or impose any of my own insights 

gained over the course of this research journey upon you, the reader. It might be inappropriate or 

even arrogant to suggest that my insights ought to become your lessons; that somehow, I am a 

voice of authority on being a health care provider (HCP). I hope that I have been able to create a 

seat for you on this journey and did not leave you behind. I hope that these stories have engaged 

you to reflect on your own role or circumstances as a HCP. As such, I am reluctant to determine 

the “implications of this research” (i.e., what I have discovered through my own self-reflections) 

for you. If there are implications at all, I hope that you have come upon them through your own 

reflections.  

Recognizing my obligations in having membership to and participating in this 

institutional culture, however, I will attempt to summarize my own insights from this four year 



   

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research journey and their implications on my own research directions, clinical practice and 

future.  

4.1 Implications for My Research Directions 

The qualitative ethnographic approach I employed in this inquiry my self-analysis and 

clinical experience. As an immigrant of Chinese ethnicity who grew up in a predominantly 

Caucasian society, I have never perceived myself to be a typical person of culture X or Y. As 

considered in my understanding of the term culture
51

, my cultural identity remains fluid. This has 

informed my view that that we are all multicultural beings and as such we do not fit neatly into 

the ethnic or racial framework used within and implied by the research community. Questions 

such as “What are the attitudes and beliefs toward mammography among African American 

women?” (Champion et al., 2008) or “What are the breast cancer experience of Asian American 

women?” (Ashing et al., 2003) presume a certain homogeneity in the cultural constructs being 

investigated. Given that constructs such as African American or Asian are often anything but 

homogeneous if not semantically ambiguous, such inquiries and their associated findings seem 

problematic. The aim of such research seems often to be reductionistic in drawing some 

simplified conclusions about a vast and diverse population.  

Out of these realizations, what struck me as infinitely more informative to my own 

clinical practice are inquiries that seeks to understand how individuals experience their lives at 

the intersection of their cultural identities. In other words, what part of a person‟s identity is 

affecting his/her experiences? Many scholars argue that this “intersectionality” research is what 

will ultimately inform and advancing our clinical practice (Cole, 2009). Moreover, Brown (2011) 

                                                

51
 For a more extensive discussion about my understanding of the term culture, refer to Chapter 1.4. 



   

143 

likens such research efforts to the continuous n=1 research and data collection that clinicians 

engage in on a daily basis.  

Through this current study on the intersectionality of my own cultural identities, I have 

come to recognize the immense value of such inquiries aimed at revealing complexities rather 

than simplification and heuristics. Research that aims to simply and formulate heuristics is not as 

valuable to me given the nuanced richness of our human experiences and the stereotyping that 

such research has encouraged in me. At the same time, I find the confusion and sense of not 

knowing that I have experienced in this inquiry helps me remain grounded to a position of 

humility, curiosity and interest. In my clinical practice, it is when I lose this attitude that my 

work becomes less effective. Likewise, as someone who provided support to patients and their 

loved ones, I was able to establish a compassionate connection when I remain humble.  

Over the course of this research, I have also come to appreciate Ruth Behar‟s argument 

that “research that doesn‟t break your heart isn‟t worth doing” (1997). On first pass, Behar‟s 

argument seemed intentionally exaggerated. Then again, when I think about the studies that have 

left the greatest impression on me, they are ones that are able to communicate their findings in a 

way that reveals the raw and emotional experiences of individuals.
52

 I find these accounts to 

reveal more about the truth of individual human experiences than the horde of aggregative and 

comparative findings that dominate the literature. Moreover, I have become aware of how stable 

                                                

52
 For me, examples of such works include Gray‟s (2000) Handle with Care?, a theatrical production that 

portrays the experience of metastatic breast cancer patients; and Bryant‟s (2010) Wrong Way to Hope, a 

documentary about young adults who live on in spite of their cancer. 



   

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my worldviews can sometimes in the face of new and conflicting information.
53

 In consuming 

research, I tend to overlook or rationalize away findings that are not consistent with my existing 

understanding. As a result, I simply dismiss or forget about many well-designed and carried out 

inquiries.  

My initial uneasiness and dismissal of the autoethnographic research approach was 

surprising and revealing of my cultural location and the beliefs that I hold about what constitutes 

research. In a brief moment of forgetting these lessons, I became awakened to the power of the 

self-narrative inquiry to uncover and communicate truth about human experience. I felt as though 

I was being invited along on their journey of self-discovery, rather than taught or sold to. When 

autoethnographers spoke from their own experiences in a way that profoundly evoked or 

revealed their emotional experience, I in turn felt intimately moved. Given the transparency with 

which authors made clear their own position, I found myself participating in a discussion with 

them about how my own narrative was similar or dissimilar. As a result of the author‟s self-

exploration, I was able to learn about my own.  

Given my own experiences with the evocative self-narratives of Ellis (Ellis, 2004) and 

Hayano (1982), I became inspired to adopt this exciting but foreign and intimidating approach. 

What made autoethnography a particularly valuable analytic framework was its fitness with the 

personal question that emerged as being most important and relevant to me. Moreover, the 

emphasis on reflexivity parallels counselling psychology‟s tradition of increasing self-awareness. 

                                                

53
 This reflects a widespread phenomenon known as a confirmation bias. It is the natural tendency for 

people to favour information that confirms their existing worldview, while dismissing that which is inconsistent 

(Abreu, 2001). In essence, our attentiveness to new information or recall of existing information is selective and 

biased. 



   

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As I was preparing myself to work in the field of cancer care, the opportunity to examine my 

own position and biases has prepared me to be more comfortable in my role as a provider of 

cancer care.  

All of these factors have given me a newfound appreciation for this method of inquiry. In 

considering the question of how (or the process by which) I have come to understand my role as 

a HCP, I have recognized the significant role of the individual narratives in informing me. As I 

find myself less and less informed by the aggregative findings of traditional research, I found the 

narratives that came from my conversations with participants or through reading 

autoethnographic writings, to be much more compelling. Rather than categorize and simplify as 

in the case of most research I read, people‟s narratives made things more muddy and confusing, a 

position that helps me maintain my humility and curiosity. As I go forward, I feel much more at 

ease with seeking out narrative and autoethnographic works as a source of knowledge about 

human beings. 

4.2 Implications for My Practice 

In Chapter 3.3, I asked the question, “Who is a HCP?” In reflecting on the many forms 

and sources of helping that I observed and personally experienced along my journey, I realized 

that providing health care is not some task or responsibility that is exclusive to those who possess 

official job titles, or expensive education and training. I found myself empowered by this 

realization as a volunteer who, together with a laboratory staff, was able to quickly step in to 

engage with and support a Cantonese speaking woman under significant distress. 

Anyone can be a HCP. In this way, I faced the sobering and yet comforting realization 

that much of our suffering, healing and support takes place outside the institutional walls of 

funded, licensed, structured cancer care. People‟s engagement with the cancer care system is 



   

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infinitesimally brief. Some may even try their best to minimize their interaction with the system. 

It was sobering to realize that a patient who seemed so pleasantly cheerful and warm when I met 

her had one day been confronted with some earth-shaking experience like losing her hair, her 

sense of womanhood or self, or her family. The encounter made me wonder where I was when 

these experiences took place. Where will I be in my role as the trained, paid, well-intentioned 

HCP in her life when she next experiences moments of intense pain and suffering? The fact that I 

will never know and will likely not be there in her “moments of greatest need” was quite 

humbling.  

It is a romantic notion, this idea of being the knight in shining armour that my client or 

patient is waiting for, that Nímāmā needed. Of course, like most romances, it collapses under the 

weight of its own expectations. I realize that having this view does a disservice to those who I 

am trying to support. It is an egocentric, self-aggrandizing position, to put myself in the centre of 

the individual‟s universe as though I as the counsellor or volunteer am the only show in town. As 

I have experienced with Nímāmā and with clients in my clinical practice, it also places immense 

pressure on those brief moments that we share. Therefore, recognizing that you have a life and 

support system beyond my dyadic relationship with you is relieving and empowering of you. I 

shift from a role of providing to one of facilitating and bridging.  

Anyone can be a HCP. My time with Nímāmā and as a volunteer helped me appreciate 

that often times, the greatest gift I can provide another is my presence, and my willingness to 

hear and understand. As much as I expect to provide some observable relief or concrete solution, 

my simple company may be what invites people out from behind their masks and closes the 

interpersonal divides that the experience of cancer so often creates. And yet, the greatest gift I 

could have provided her was my presence, my courage to stay. I do not think that she wanted or 



   

147 

needed me to take her physical pain away or to resolve the interpersonal conflicts that had 

existed in her life. From me, she simply wanted someone that could accept her unconditionally 

and not have advice or expectations for her.  

Someone that could sit with her and watch a lousy escapist movie with her.  

Someone that could play cards with her. 

Someone that could share with her stories, learning and hopes for the future. 

Someone that could help her stay grounded in this world at a time when she was losing 

grip. 

At the very least, I provided these gifts to her. 

And although anyone can fulfill this role for someone, I have realized that it takes 

tremendous courage and strength to be able to bear witness to their pain. So often our natural 

response may be to be moved to action, advice or solution, and despite my good-intentions and 

care, my help becomes often misplaced and unwanted. 

“Anyone can be a HCP” also means that those who are cared for, may also provide care 

themselves. I did not realize this in the time that I shared with Nímāmā. Instead, I desperately 

tried to impose myself as the HCP, which condemned her to a position of illness, weakness and 

need. It denied her the opportunity to express her strength, hers self-sufficiency, her deep 

devotion to her family, qualities that remained with her even while she had to bear a disease that 

was shutting down her body.  

I did not need to be her care provider, but she was mine. She provided the gift of pain, the 

lesson that through sharing her suffering then and through crying for her now, we become closer. 

We were no more than strangers before, connected only by heredity. Now, my pain, my grief and 



   

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even my guilt is what connects me, and all my future work and aspirations in this profession to 

her.  

4.3 Implications for Social Policy 

Such considerations prompt the question, “What holds currency?”, and in follow-up, 

“Who determines what holds currency?” To the first, I was reminded of a recent and thematically 

familiar news report. A local weekly, drop-in recreation group therapy program for seniors was 

closing due to provincial funding cutbacks. Several group members expressed sorrow and anger 

as the program was “a lifeline” that gave them “motivation to get up”. I was disappointed in 

hearing about this news, not only for its implications on the well-being of group members but 

also for what it suggests about those engaged in policy making. Is it a reflection of their attitude 

about what sort of care holds currency and thus is deserving of funding? For those who see no 

motivation to get up or looking forward to the next day beyond the sense of community and 

contact which they may experience, is the mere being present not the most invaluable care that 

we could provide them?  

What discourages me more than the views of certain policy makers is to think that similar 

attitudes may be pervasive within society at large. Indeed, I recognize even my own tendency to 

give value to that which is observable and immediate, and to those who are trained, positioned or 

salaried. How many others also dismiss the tremendous value of the volunteers, family members 

and random strangers who offer their skills and contributions in moments of need? 

I struggle with these seemingly conflicting aims, to either be present for someone or to 

provide solutions, interventions and treatments for them. We will always have broken bones that 

require casts, infections that can be treated with medication and tumours that warrant surgical 

removal. In these cases, distress on the body affects the mind as much as much as the inverse is 



   

149 

the case. And yet, does our society‟s dominant focus on our bodily distresses come at the cost of 

our capacity to exist in our body. My greatest worry is that it may. 

 

Recently, I was surprised to find myself deeply engaged in a conversation with a 

colleague about this research. I was very heartened to discover that many of my realizations held 

resonance for her. More significantly however, I was amazed and impressed with how cogently I 

was able to communicate my ideas to her. It is especially remarkable given that I have never 

been good at presenting messages impromptu and always need time to assemble my thoughts and 

rehearse. Where has this ability come from? As I reflected on this question, I began to identify 

the many conversations I have had about this research over the course of this four year journey. I 

have engaged with scholarship adjudication committees, colleagues, professors, research ethics 

boards, conference attendees, community and family members, and even perfect strangers. Each 

of these experiences has helped in honing my ability to communicate complex ideas to a broad 

audience and in a variety of contexts.  

Having arrived at this point, I cannot help but feel a certain pride and excitement at my 

growth as a HCP, researcher and communicator. While I have always had an interest in working 

at a social justice and policy level, I had never thought of myself as someone with the skills to do 

so. My recent conversation with a colleague challenged me to believe that I can. From here, I 

could arrange to conduct more formal presentations or write manuscripts. Irrespective of the 

direction that I take with this inquiry though, I have a sense that I will be able to do so and that is 

a very gratifying feeling. 



   

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4.4 Finally 

If this inquiry has taught me anything at all, it would be that in order to care for others, I 

must first start by caring for myself. It is like the familiar analogy of being in an airplane cabin 

that has depressurized. If the oxygen masks appear, we are instructed to always secure our own 

masks before assisting others; otherwise, we will lose consciousness before we may be of any 

support to our loved ones. No one wins.  

My culturally ingrained value to uncover new knowledge creates a certain disposition for 

me to look outside of me for data. Through this autoethnographic inquiry that endeavoured in the 

beginning to better understand how to more effectively support immigrants and young adults 

with cancer, I realized that my major barrier was to study myself. There are no hidden tricks, no 

expert skills in being a HCP. At its most foundational level, being a HCP for me involves simply 

being present for another, being there to bear witness to both their moments of joy and sorrow.  

When all else seems disrupted, put on hold or lost, it is our sense of connection that will 

sustain us. When our faces seem strange or masked, it is our willingness to be genuine that will 

reveal us. In being present to you, the divide between us closes. 

  



   

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Abreu, J. M. (2001). Theory and research on stereotypes and perceptual bias: A didactic resource 

for multicultural counseling trainers. Counseling Psychologist, 29(4), 487-512.  

Adolescent and Young Adult Oncology Progress Review Group. (2006). Closing the gap: 

Research and care imperatives for adolescents and young adults with cancer. Bethesda, MD: 

National Cancer Institute. from http://planning.cancer.gov/pdfprgreports/2006AYAO.pdf 

Ahn, A. C., Ngo-Metzger, Q., Legedza, A. T. R., Massagli, M. P., Clarridge, B. R., & Phillips, R. 

S. (2006). Complementary and alternative medical therapy use among Chinese and 

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APPENDICES 

Appendix A 

Initial Research Proposal 

Understanding the psychosocial experiences of cancer patients of Chinese ethnicity (CPCE) 

in the British Columbian cancer care system 

Context. In Canada, it is estimated that nearly 160,000 new cases of cancer will be diagnosed 

this year (Marrett et al., 2007). Of these, approximately 15% will be from an ethnic minority. 

Unfortunately, there is growing evidence to suggest that individuals from ethnic minorities are 

receiving lower quality health care in Canada than the general population, leading to poorer 

health outcomes (Lin et al., 2002). This is especially the case for cancer patients of Chinese 

ethnicity (CPCE, defined here as either Chinese-born or of Chinese descent), whose cultural 

differences (e.g., in language, beliefs and attitudes) produce challenges for health service 

providers. 

Because of language difficulties, Chinese patients are often reluctant to seek medical 

attention, sometimes ignoring symptoms until they become severe (Gany, et al., 2006). Research 

also shows that CPCE are less aware of services such as home-based palliative care or hospices 

and, as a result, access them less frequently than Caucasians (Feser & Bon Bernard, 2003). 

Patient compliance is also a problem and when physicians are not understood, Chinese patients 

are reluctant to seek clarification (Green et al., 2005). As a group, they are also more likely to 

rely on complementary or alternative medicines (Xu et al., 2006), which may reduce their 

compliance with conventional treatment programs. Some CPCE are reluctant to discuss their 

illness for fear of burdening their loved ones (Tong, 1994). This, as well as the belief that cancer 



   

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is contagious may lead certain Chinese cancer patients to feelings of social isolation (Gany et al., 

2006).  

Where culture is a focal determinant in our perception of illness and suffering, increased 

cross-cultural understanding becomes a necessary component of providing the best quality health 

care possible (Kagawa-Singer & Blackhall, 2001). Unfortunately, there is little guidance for 

service providers working with CPCE within the literature, especially in the context of the 

Canadian Health Care System. Past studies have examined the views of both cancer care 

professionals working in Asian communities and cancer survivors; however, very little is known 

about the quality of care received from the perspective of the minority patient. Further research 

directly examining the experiences of CPCE is needed to help guide service providers in 

delivering culturally competent care. 

Research Framework. The broader research program will aim to develop a theory to explain 

the overall experience of CPCE in the British Columbian cancer care system over the course of 

their illness. The proposed study will more specifically focus on the psychosocial dimension of 

the patient‟s experience. I will employ a qualitative approach based on Glaser and Strauss‟s 

(1967) grounded theory. In contrast to deductive research where an existing theory is either 

supported or rejected by testing its predictions, the grounded theory approach is characterized by 

research in which a theory is developed from (i.e. becomes grounded in) a series of observations. 

This approach is suited to examining the experience of CPCE where there is still an insufficient 

theoretical basis to draw from.  

In working closely with Mr. Richard Doll at the British Columbia Cancer Agency, thirty 

CPCE will be recruited at the beginning of their treatment. This will include participants of 

varied age, education level, English proficiency, length of time living in Canada and ethnic status 



   

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(immigrant or generational Canadian). The setting is a major Canadian city that is home to a 

large Chinese population (30%) of varying age and degrees of acculturation. An equal number of 

men and women as well as a varied selection of cancer types will be recruited in order to 

minimize the possibility of obtaining gender- or cancer-specific information.  

Over the course of one year, I will conduct a series of semi-structured interviews with 

each participant. A review of the literature has identified a number of possible areas for 

discussion including cultural beliefs, family and peer support, communication difficulties and 

mental health (Liu, 2005). The patient‟s condition (either recently diagnosed, recently treated 

with promising results, recently treated with uncertain results or palliative) will be noted at the 

time of each interview. Interviews will be recorded, transcribed and coded. Themes that emerge 

from an ongoing examination of the data (using the Nvivo qualitative data analysis software) will 

direct the focus of subsequent interviews. This corrective feedback will continue until a general 

theory emerges. 

Significance and Future Directions. There is a paucity of literature to inform cancer care 

professionals about the unique psychosocial experience of CPCE. The proposed study is situated 

within a broader research program, which will attempt to develop a theory to explain the overall 

experience of CPCE in the British Columbian Cancer Care System. In later doctoral research, I 

hope to build on the current study by exploring other dimensions of the patient‟s experience 

including the physical and spiritual components. In developing this theory, it is hoped that new 

insight will be provided for health professionals and policy makers working to improve the 

quality of care for CPCE. The theory may also be used to generate additional research to explore 

the experiences of other minority groups in cancer care or more general health care settings.   



   

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Appendix B 

Literature Review 

In this appendix, I will provide a review of the relevant literature to inform my inquiry 

into the cultural experiences of IYAs with cancer. This research is at its core an inquiry about 

cultures. As such, this chapter will begin by conceptualizing culture and in turn locating the self 

within this concept.  

The cultural experiences of IYAs with cancer are complex and diverse. No single body of 

literature could wholly capture their experiences. I have therefore constructed this review, and 

thus my inquiry, around three domains of cultural knowledge: the experience of immigrants, 

individuals transitioning from adolescence to adulthood, and the culture of cancer. To my 

knowledge, no previous research has specifically focused on the overlap of these three 

knowledge domains. A knowledge gap will be identified over the course of this literature review. 

It is the aim of the current study to address this gap. 

This collection of knowledge will serve neither to limit the current research inquiry, nor 

to generate testable hypotheses a priori; rather, this base of knowledge will help to sensitize me 

to the range of possible experiences of IYA with cancer. Although I am not immune to my own 

biases and worldviews, a broadened awareness of past scholarships will prepare me to receive 

fieldwork conversations and interactions with a more open mind. This open-minded attitude will 

be central to this inquiry, a point to be described in more detail in Chapter 3.  

 

B.1 The Experience of Immigrants  

In order to make sense of the present experiences of IYAs with cancer, it is necessary to 

understand their cultural past. I therefore begin this section by describing some of the 



   

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circumstances that may motivate immigration. Following this overview, I consider some of the 

significant dimensions of many immigrants‟ experience of transitioning from their community of 

origin to their new community, including challenges to the family integrity and the integral role 

of language. Although no single narrative can captures the lives of all immigrants, I believe an 

appreciation of the research described below allows me to better contextualize each individual‟s 

unique narrative. 

B.1.1 Pathways of immigration. 

Every year, an increasing number of newcomers from more than 180 regions of the world 

arrive in the province of BC seeking education, employment, safety, refuge or the promise of a 

better future. At present, BC‟s population is made up of 1.1 million individuals who were born 

outside of Canada. The most frequently reported non-English mother tongues include Punjabi, 

Mandarin, Cantonese, German and Tagalog, with over 100,000 individuals who speak neither 

English nor French (Scott, Harmsen, Prictor, Sowden, & Watt, 2003; Statistics Canada, 2006). 

Although often colloquially referred to as “immigrants”, newcomers may be broadly 

distinguished into two different groups. Refugees or asylum seekers as referred to by some 

scholars account for roughly 6% of newcomers to Canada (Statistics Canada, 2008). In their 

homeland, they often resided in conditions of political or economic insecurity. Their decision to 

emigrate is often sudden or forced. The journey of refugees is often fraught with fears and 

uncertainties. Many refugees sustain deep physical or psychological wounds in their homelands 

that remain long after their escape (Liebkind & Jasinskaja-Lahti, 2000). Historically, events such 

as the Vietnam War and Cold War as well as civil unrest in Haiti and the Middle East have 

resulted in mass displacement of individuals to various countries of the world (Vernez, 1991).  



   

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Unlike refugees, immigrants are largely motivated to immigrate by pull factors such as 

educational opportunities, and social and economic prosperity in the new country (Chen, Gee, 

Spencer, Danziger, & Takeuchi, 2009). The decision to leave the home country can be a life-

changing one and is often only arrived at after having carefully weighed all of the possible gains 

and losses. Consequently, immigrants are often psychologically more prepared to transition to a 

new sociocultural context than refugees. Of these two groups of newcomers whose experiences 

may be vastly different, the present inquiry will solely examine the experience of immigrants.  

Many economic and social forces are at work as immigrant families decide to leave their 

home country for a new country. A comprehensive survey of newcomers to Canada found that 

the most common reasons for immigration included reuniting with family and friends, improving 

the future for one‟s family, and seeking better work and educational opportunities (Statistics 

Canada, 2005). 

Once immigrants arrive in their new sociocultural milieu, their lives may unfold in vastly 

different ways. The 2005 report of the Longitudinal Survey of Immigrants to Canada Study 

(2005), six months after arrival 26% unemployed and about one-third reported not having 

enough money to meet their basic needs. Immigrants may also experience challenges as a result 

of language barriers, a lack of recognition of previous training and education, or a loss of social 

supports.  

Despite the challenges of settlement and integration during the initial period post-

immigration, most immigrant families are sustained by hope for a better future (Statistics Canada, 

2005). They have a positive social attitude that can take them on an upward social trajectory. A 

vast majority of immigrant children and their parents perceive school and education as pathways 

to success in their new cultural milieu (Krahn & Taylor, 2005). When asked to complete the 



   

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statement, “In life the most important thing is…” many immigrant youth will respond with some 

reference to their school (Suárez-Orozco & Suárez-Orozco, 2001).  

Although some immigrants engage in upward social mobility over the course of their 

residency in a new country, a large number of immigrants increasingly struggle over time. A 

number of studies have observed that although immigrants arrive with above average health, 

more positive social attitudes, and higher academic performance and aspirations – potentially an 

artefact attributed to the selection bias fostered by Canadian immigration policies (see Li, 2002) 

– these advantages decline over time (Beiser, Hou, Hyman, & Tousignant, 2002; Blake, Ledsky, 

Goodenow, & O'Donnell, 2001; Krahn & Taylor, 2005). For example, research has found lower 

rates of depression and alcohol dependence amongst newly arrived immigrants as compared to 

both long-term immigrants and a Canadian-born sample (Ali, 2002). Moreover, the chances of 

reporting chronic health conditions increased with increased length of residence in Canada 

(Alegria, Sribney, Woo, Torres, & Guarnaccia, 2007; Pérez, 2002). 

B.1.2 Family dynamics. 

The process of immigration has the potential to destabilize family life, creating complex 

patterns of fragmentation and reunification (Suárez-Orozco, Todorova, & Louie, 2002). 

Traditional immigrant narratives often describe a family member, often the father, acting as the 

“migration pioneer” in leaving his home for foreign, uncharted lands. His hope is to find a new 

world that will bring social and economic prosperity to his family. In these circumstances, the 

child is left at home in the care of the remaining parent or relatives while the pioneer attempts to 

settle and establish him or herself in the new world. Once settled, parents may send for children, 

allowing them to be reunited after a lengthy period apart. Conversely, a child may be sent to a 



   

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new country to learn English and get an education while their family remains in the native 

country. The child may live with relatives or host families.  

In both scenarios, complex attachment patterns may develop. Often grandparents or other 

relatives may become the source of safety and security for a child that is left by the parents. In 

some collectivistic cultures where a child is raised by a community of individuals, this may be 

perceived as normal (Suárez-Orozco et al., 2002). The extended separation due to immigration 

may be experienced quite similarly to a parent going off to work. For other immigrant youth, 

being separated from the parents may be experienced as abandonment (Brown & Whiteside, 

2008). The child may come to believe that his parents do not want him, leaving him feeling 

unloved or inadequate. In light of these circumstances, reunification of the family may be quite 

disorienting for the youth. Early attachments formed with non-parent caregivers may become 

broken through immigration. At the same time, the immigrant youth may be required to 

reacquaint himself with his parents, people who may seem entirely foreign to him.  

Children who are transposed from one family context to another during their formative 

years may struggle later in life in developing healthy attachments (Bayer, Sanson, & Hemphill, 

2006; Suárez-Orozco et al., 2002). According to Bowlby‟s (1969; 1973; 1980) attachment theory, 

unpredictable care-giving patterns may foster confusion, hopeless and fear in children 

(Ainsworth, 1979). They may try to deal with stress in very incoherent and ineffective ways. 

Moreover, parents who struggle themselves with the economic and social difficulties of moving 

to a new country may find less time to spend with their children. As a result, immigrant youth 

may experience their parents as being physically or psychologically unavailable to them.  

Another often observed phenomenon amongst immigrant families is the inversion of 

power hierarchies (Bacallao & Smokowski, 2007). While many practitioners would describe a 



   

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desirable family structure as one involving the parents taking charge, setting rules and making 

decisions; the children often find themselves assuming adult-like responsibilities within the 

immigrant household. This often occurs in situations where parents depend on their children to 

serve as linguistic or socio-cultural interlocutors in the family (Lee, 2004). 

This family structure, although not inherently harmful, has the potential to create 

challenging family dynamics (Minuchin, 1974). While neither cognitively nor socio-emotionally 

prepared for their adult-like responsibilities, immigrant children may feel overwhelmed by the 

pressures to uphold their family (Tseng, 2004). Furthermore, practitioners have observed how 

this accelerated maturational process can lead to significant and enduring distress for the children 

long into their adulthood (Westwood & Wilensky, 2005).  

At the same time, an absence of proper parental authority may lead to children growing 

up unconstrained, unguided and unsupported. Children who grow up in unstructured 

environments may experience anxiety due to a perceived absence of safety (Bowlby, 1973). 

Their worldview becomes one where they may depend only on themselves because they have 

learned that no one will help them in their time of need. Such experiences, although not 

inexorably etched into the pathway of immigration, are nevertheless important considerations in 

the understanding of immigrant family dynamics. 

Crosscutting these patterns of family dynamics is a divergence in value and belief 

systems between immigrant parents and their children. Portes (1997) coined the term "dissonant 

acculturation”. It refers to the phenomenon whereby immigrant adults adapt to Western culture at 

a slower rate than those who arrive as children or who are born in the West.  

Dissonant acculturation has been attributed to a number of factors (Phinney, Ong, & 

Madden, 2000). From the outset of immigration, older immigrants have accumulated more years 



   

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of experience and cultural influences in their country of origin than younger immigrants. Their 

years of socialization in a different cultural context have created a more deeply-rooted culture 

that is not as easily amenable to change. Children and younger immigrants are often more adept 

at learning and adopting new lifestyles, attitudes and social practices.  

Moreover, the contact and exposure children have with the new society – in the form of 

schools, peer groups, popular media – is often more pronounced and enduring than that of adults 

(Suárez-Orozco & Suárez-Orozco, 2001). Due to continuous and regular contact with social 

institutions such as school and the mass media, immigrant youth are able to quickly develop 

competencies suitable to survive in their new society. Immigrant parents, on the other hand, have 

fewer opportunities to do so. During the early years of resettlement, many will find employment 

in culturally segregated workplaces and interact mostly with their own cultural communities. 

These factors create a generational divergence between immigrant adults and youth. This 

dissonant acculturation increases with time in a new country.  

B.1.3 Language as a significant factor in immigration. 

A further factor that fosters this dissonant acculturation is the different rate of language 

acquisition amongst immigrants, particularly between younger and older immigrants. A 

combination of age at arrival in Canada, length of time in Canada and educational attainment 

significantly predict an immigrant‟s English proficiency (Rumbaut, 2009). The younger non-

English speaking immigrants are at the time of migration, the more likely they will possess a 

high level of English proficiency. This is rooted in a biological predisposition for language 

acquisition that, over time, diminishes as the neuroplastic properties of the brain decreases 

(Birdsong, 2006). 



   

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Where language serves as a fundamental tool for gaining access to valuable social and 

institutional resources (Statistics Canada, 2005), language barriers can often act as mechanisms 

for creating social disparities (Carrasquillo, Orav, Brennan, & Burstin, 1999). Because a large 

proportion of immigrants come from non-English speaking backgrounds, it is not surprising that 

researchers have found lower rates of health care access amongst immigrant groups as compared 

to the overall population (Centers for Disease Control and Prevention, 2004; Chen, 2005).  

Thus, many social forces exist that pressure non-English speaking immigrants to learn to 

communicate in the majority language. At the same time, researchers have observed that, over 

time, people‟s commitment to their ancestral language becomes fleeting at best (Rumbaut, 2009). 

A multiethnic study of young adults in Los Angeles found that 97.4% of first generation 

immigrants grew up speaking a language other than English and 17% preferred to only speak 

English at home (Rumbaut et al., 2004). Amongst third generation immigrants, there was a 

striking reversal of preferences. Several studies have found similar dramatic declines in retention 

of ancestral languages and acquisition of English across multiple immigrant generations (Pew 

Hispanic Center, 2004) and within a given generation over time (Rumbaut, 2009). Although 

some languages survive longer when situated within highly concentrated ethnic communities, 

even the most deeply-rooted languages will die out over the course of two or three generations 

(Rumbaut, 2009). 

Rumbault (2009) notes that “[i]n the United States, a country lacking centuries-old 

traditions and receiving simultaneously millions of foreigners from the most diverse lands, 

language homogeneity came to be seen as the bedrock of national identity. Immigrants were not 

only expected to speak English, but to speak only English as a prerequisite for social acceptance 

and integration” (p. 36). 



   

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In spite of the prevalence of statistics and studies that describe the precipitants of 

language acquisition, what remains unexamined are the experiences of immigrants as they 

transition linguistically and socially into a new community. What external or internal 

acculturative pressures do IYA experience in learning to speak a different language? How do 

they cope with these pressures? 

 

B.2 Young Adult Culture 

Little scholarly work has been done to theoretically frame the study of the developmental 

period of life immediately following adolescence (Nelson et al., 2007). This is a significant time 

in the life of an individual, often characterized by transitions, distress and conflict. While 

experientially considered by many to be a distinctly different developmental period, research 

often subsumes these individuals under either the adolescent or adult categories (Adolescent and 

Young Adult Oncology Progress Review Group, 2006; Arnett, 2000). The result is a dangerous 

overgeneralization in which practitioners and researchers construct their knowledge base of 

“young adults” from studies using adult samples, a demographic category that may include 

individuals as old as 64. This section highlights and distinguishes the period of life immediately 

following adolescence and before adulthood, one that some scholars have referred to as 

“emerging adulthood”. 

B.2.1 Conceptualizing emerging adulthood. 

It has only been recently that the concept of emerging adulthood has surfaced within the 

scholarship of western industrialized societies. Emerging adulthood is considered a unique 

period of development in the life course. Arnett (2000; 2001) proposes five conceptual features 

that set it apart from adolescence and adulthood, including: 1) exploring identity especially in the 



   

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areas of work, love and world views; 2) experiencing change and instability; 3) a heightened 

focus on the self with few obligations to others; 4) feeling in-between, being neither an 

adolescent nor an adult; and 5) perceiving potential to steer life in any number of desired 

directions.  

Survey studies with samples of individuals aged 19 to 30 have further defined the concept 

of emerging adulthood to emphasize subjective experiences like relational maturity (i.e., 

accepting responsibility for the consequences of actions, establishing a relationship with parents 

as equals) and family capacities (i.e., running a household, financially supporting the family) 

over specific life events like marriage, completion of education and starting a career (Nelson & 

Barry, 2005). Little importance was ascribed to biologically- and age-defined transitions such as 

reaching a certain legal age or height, being legally allowed to drink or having sex. 

B.2.2 Between and within groups differences. 

Although the construct of emerging adulthood has been well defined and validated in 

western, industrialized settings, some have questioned its generalizability to other ethnic groups 

(Facio & Micocci, 2003; Nelson, Badger, & Wu, 2004). The very notion of developmental 

periods or stages of life is a very western notion structured by a legal age of majority and the 

timing of education. Even amongst western industrialized societies, the conferring of adult 

responsibilities adhere to different timelines are dependent on regional, if not familial factors. 

Indeed, the cultural construction of emerging adulthood becomes evident upon examining 

different ethnic groups. For example, a survey study of university students in China revealed that 

that the majority felt they had reached adult status in their early twenties, had different criteria 

for adulthood, and behave differently and have different belief systems as adults (Nelson et al., 

2004). A study of Argentinean adults also found different endorsement patterns of criteria for 



   

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adulthood (Facio & Micocci, 2003). Amongst adults of Aboriginal Canadian heritage, a greater 

emphasis was placed on interdependence and the maintenance of harmony, as well as the role of 

children and family (Cheah & Nelson, 2004). Thus, the timing and construction of emerging 

adulthood is not universal but rather specific to ones cultural upbringing.  

Despite differences between ethnic groups, comparative studies have indicated that 

immigration may have a marginal effect in shifting conceptions. For example, Chinese and 

Latino university students studying in the United States had more similar views of emerging 

adulthood when compared to White American students, than their counterparts in China and 

Latin America (Badger, Nelson, & Barry, 2006; Facio & Micocci, 2003). These findings suggest 

that individuals who immigrate to a new ethno-cultural setting may to some degree adopt local 

constructions of emerging adulthood. 

There is also indication that the perspective of emerging adulthood differs between 

children and their parents. One study compared criteria for adulthood as espoused by parents and 

their emerging adult children (Nelson et al., 2007). Although many items were similarly rated as 

being important and unimportant, children consider some processes to be significantly more 

important for adulthood than their parents. This included accepting responsibility for personal 

actions, achieving relationship with parents as equals, being financially independent from parents 

and deciding on beliefs/values independently of other‟s influences.  

B.2.3 Summary of a young adult culture. 

Overall, the construct of emerging adulthood is at its core a transitional period during 

which individuals are largely ambivalent about their status as adults. Individuals in this 

developmental period have passed adolescence but have yet to self-identify as adults with all the 

relational and familial capacities that characterize adulthood. Although now conceptually well-



   

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defined, the research community continues to ignore the lived experiences of these emerging 

adults. Missing from the plethora of survey studies with researcher-defined items and closed-

ended response scales are the actual voices of young adults who experience the uncertainties and 

instabilities of this period of life. Similarly, although one survey study has examined how the 

construction of emerging adulthood differs between children and their parents (Nelson et al., 

2007), little is known about how such differing viewpoints impact their relationship. 

Thus a significant knowledge gap exists in understanding the experience of young and 

emerging adults. This direction of research inquiry is of particular importance amongst 

immigrant and cross-cultural scholarships. As past studies have indicated, the experience of 

emerging adulthood is not universal but rather specific to ones cultural upbringing. How, then, 

might the transition to adulthood look different for those also experiencing immigration and 

adapting to a new social context? A discovery-oriented, individual-centered research approach is 

desperately needed to explore the cultural experiences of young adults and specifically IYA. 

Such research would serve to inform mental health professionals about how to better support 

IYAs during their many transitions in life. 

 

B.3 The Culture of Cancer 

The term “cancer” has many meanings. As a biomedical term, it refers to a diagnostically 

diverse category of disease states where normal cells of the body lose their ability to self-regulate 

and begin reproducing uncontrollably (Canadian Cancer Society, 2009). This cellular process 

can manifest itself in a plethora of different ways, many of which lead to pain and suffering for 

both the individual patient and those around him or her. The symptoms can be acute and pressing, 



   

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or acute and intense. The course of treatment for this disease state can also take on many forms 

from surgery to radiation therapy to chemotherapy to gene therapy.  

As such, the personal narrative of each cancer patient is wholly unique. This section 

reviews only some of the possible experiences of individuals with cancer found in research. I 

will begin by reviewing research that suggests young adults may be a marginalized and thus 

particularly vulnerable population in cancer care. This will lead to a discussion of the important 

role of social support during illness and the influence of culture in support seeking behaviours. 

From this review, a case will be built for an increased need for research into the experience of 

young adults and immigrants with cancer using an approach that not only honours their voices 

but also recognizes the cultural influences that have shaped their lives.  

B.3.1 Young adults with cancer. 

Rowland‟s (1990) developmental model of adaptation to illness suggests that, although 

there are common experiences associated with the diagnosis and treatment of cancer, the specific 

needs of patients may vary significantly across different ages or developmental periods of life. 

The experience of young adults with cancer is of particular concern. Since the early 1970‟s, 

cancer incidence among young adults aged 15 to 29 years has been rising faster on an annual 

basis than that of cancer diagnosed in both younger children and older adults (Bleyer & Albritton, 

2003). Today, more than 25,000 young adults are diagnosed with cancer in Canada and the 

United States each year (Bleyer & Barr, 2006; Canadian Cancer Society's Steering Committee, 

2009). Despite these staggering figures, young adults with cancer are marginalized by both our 

cancer care system as well as the research community (Adolescent and Young Adult Oncology 

Progress Review Group, 2006). Young adults are in a transitional period in their lives, no longer 



   

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an adolescent and yet not quite an adult (Arnett, 2000). As a result, they have significant 

psychosocial needs that are often quite different from either children or older adult patients. 

For example, research has found that young adults may experience cancer as much more 

distressing and debilitating than either older adults or children. Compared to cancer patients aged 

65 and over, younger adults were found to be more profoundly impacted by their disease 

(Williamson & Schulz, 1995). Researchers accounted for this in a number of ways. Young adults 

usually have had fewer experiences with illness and disability. They also have a high expectation 

about their level of functioning. Young adults are often looking to the future. At a time when 

many are assuming significant responsibilities, planning out their careers and forming intimate 

relationships, a cancer diagnosis can be especially devastating and life-changing for young adults.   

The experience of cancer often leads to concerns about body image and self-esteem 

particularly amongst young adults (Evan, Kaufman, Cook, & Zeltzer, 2006). Disfigurement of 

the body due to the disease progression and treatment (e.g., hair and weight loss), reduced energy 

levels, missed social opportunities or classroom time because of visits to the hospital all 

contribute difficulties in developing a healthy self-image. Young adults, who would otherwise be 

in the best health of their life, may disengage from their supportive social relationships. Many 

become reluctant to commit to intimate relationships for fear of an uncertain future (Evan et al., 

2006). Alternatively, young adults may feel resolved to being self-reliant and would feel 

ashamed to seek help (Taylor et al., 2004). These experiences form a vicious cycle where poor 

self-esteem fosters increasing disengagement from life and vice versa. Young adults with cancer 

may withdraw themselves from their social resources at a time when they may need it the most 

(DiMatteo, 2004). 



   

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Thus, for young adults with cancer, their life is a lonely struggle and their future looks 

bleak. Due to advances in cancer treatment, however, more young adults than ever before have 

overcome their cancer ordeal. From 1991 to 2001, 5-year survival rates amongst young adults 

with cancer have increased from 67 to 77 percent (Bleyer & Barr, 2006). Conditions that were 

once fatal have become more chronic and treatable. It is now estimated that 1 in every 640 young 

adults is a long-term survivor of childhood cancer (National Cancer Policy Board, 2003). 

Moreover, for many young adults who are survivors of cancer, an end to treatment, returning to 

school or work, leaving home, dating, starting a family or career are all significant milestones in 

their transition into adulthood (Adolescent and Young Adult Oncology Progress Review Group, 

2006).  

In this changing landscape, cancer care providers must broaden their attention to 

supporting not only the immediate medical needs of young adults, but their long-term 

psychosocial needs as well (Soliman & Agresta, 2008; Stuber, Shemesh, & Saxe, 2003).  

B.3.2 Social support during illness. 

The importance of social support in the life of young adults with cancer cannot be 

understated. Studies have repeatedly found that support can provide significant and lasting 

benefits during times of illness. Social support serves as a buffer to stress (Tyson, 2008), 

increases a patients‟ adherence to treatment (DiMatteo, 2004) and leading to lower rates of 

mortality (Kroenke, Kubzansky, Schernhammer, Holmes, & Kawachi, 2006). Given its 

significant role in the cancer patient‟s recovery process, an increased understanding of social 

support would aide my interpretation of this current research. This section provides a framework 

for understanding the construct of social support and its potential sources.  



   

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Taylor and colleagues (2004) define social support as “the perception or experience that 

one is loved and cared for, esteemed and valued, and part of a social network of mutual 

assistance and obligations” (p. 355). This definition highlights how support may be either real or 

perceived. House and Kahn (House & Kahn, 1985) further subdivide the construct into three 

types:: informational, instrumental and emotional support. Informational support refers to 

helping another to understand a stressful event better or to ascertain what resources and coping 

strategies may be needed to deal with it. Instrumental support includes tangible assistance such 

as services, financial assistance, and other specific aid or goods. Emotional support refers to 

providing warmth and nurturance to another individual and reassuring the person that he or she is 

a valuable person who is cared about.  

Research has found that as we grow up, our sources of social support may change, a 

process that varies by culture. Amongst Euro-Americans, for example, the predominant sources 

of social support prior to grade four are parents or significant care providers (Wentzel, 2002). Up 

to grade 10, same-sex peers slowly take the place of parents as sources of support and connection. 

During young adulthood, romantic partners, friends and other adults are identified as sources of 

support (Connolly, Furman, & Konarski, 2000; Laible, Carlo, & Raffaelli, 2000).  

Zebrack and colleagues (2006) found that the social support networks of young adults 

with cancer seem to be consistent with the above findings. What is notable in this study, however, 

is that medical professionals misunderstand the relative importance of particular aspects of a 

young adult cancer patient‟s life. Medical professionals perceived the biomedical, psychosocial 

and informational needs of young adults to be higher than what young adults rated. Furthermore, 

more young adults ranked the relative importance of opportunities to meet other young people 

with cancer as greater than the importance of support from family and friends. 



   

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These findings highlight the need for medical professionals to be more informed about 

the needs of their young adult patients. When misunderstandings occur, patients‟ needs will 

inevitably become neglected. This disconnect may serve as a hindrance to providing the most 

person-centered and thus effective care possible.  

B.3.3 Ethno-cultural influences on support seeking. 

Consideration of the psychosocial needs of young adults is overlaid by complex ethno-

cultural factors (Kim et al., 2008). For example, one‟s cultural upbringing may influence the type 

or source of social support that one considers to be most valuable. Likewise, individuals may 

vary significantly in the way they express a desire for support. This culturally-informed 

perspective is vital for medical and mental health professionals to provide the most effective and 

holistic cancer care possible.  

Regrettably, there have been few studies that have contextualized social support within a 

cultural framework. Many of the exceptions adopt a largely positivistic, quantitative paradigm 

that silences the voices of individual participants. Take, for example, Moilanen and Raffaelli‟s 

(2009) multiethnic survey study that compared European-, Asian-, Cuban-, Latin-, and Mexican 

Americans college students on their support seeking behaviours. Participants were asked to rate a 

series of questions on their degree of connectedness with various individuals, like parents and 

friends. Their findings were reported as mean levels of support sought and received aggregated 

by ethnic group and gender. A similar study of Asian American college students found that they 

were significantly less likely to draw on familial support than their Euro-American counterparts 

(Taylor et al., 2004).  

Social psychologists have also attempted to shed light on the nature of social support 

amongst different ethnic groups. In one experiment, Asian and Euro-American participants were 



   

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asked to give their appraisal of a woman who, upon being exposed to a stressful event, either 

sought out support or bore the stressor (Chu, Kim, & Sherman, 2008). It was found that Asian 

American participants evaluated the woman more negatively if she sought support. Conversely, 

Euro-American participants saw the woman more positively after watching the same video. Thus, 

it was concluded that not only are Asian Americans less likely to seek out support, but they 

would also perceive others more negatively. In another study, when students of Asian ethnicity 

underwent a priming task that made them reflect upon their relationships, they were not only less 

likely to seek support, but also expected that any support would be less useful (Kim, Sherman, 

Ko, & Taylor, 2006). These findings, if collectively interpreted, support the widely held belief 

that individuals of Asian ethnicity are less likely to seek out socials support than their Caucasian 

counterparts in times of stress. This conclusion is consistent with qualitative and quantitative 

studies amongst Asian American cancer patients (Ashing et al., 2003; M. S. J. Chen, 2005; Gany, 

Herrera, Avallone, & Changrani, 2006).  

A number of explanations exist to account for this. Bolger, Zuckerman, and Kessler 

(2000) found that people who draw on their support networks during times of stress may find it 

further distressing because it is an admission of weakness and reduced one‟s self-esteem. 

Moreover, people, especially those of collectivist cultures who place high value in group 

harmony, may be reluctant to seek the support of family members because it was perceived as 

taxing of others‟ (Ashing et al., 2003). In fact, older cancer patients of Asian ethnicity are 

sometimes unwilling to seek their children‟s support for fear of being a burden.  

In order to make sense of a reluctance to seek support based on the perceived impact on 

others requires a worldview that is premised on the interconnectedness of people. This is 



   

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juxtaposed against an individualistic worldview that would conceptualize social support as a 

specific and explicit transaction (Kim et al., 2006). 

Thus, in reviewing the social support literature, Kim et al. (2008) conclude that there may 

be differences in how people seek and receive social support. Moreover, what constitutes 

effective social support may differ by culture. With this knowledge, health care professionals 

must in turn provide support in culturally sensitive ways such that the support is welcomed rather 

than shunned as a perceived burden to the supporter. For example, it has been proposed that 

social support resources that do risk disrupting relationships and do not explicitly discuss the 

problem may be most readily sought out by individuals of collectivistic values (Kim et al., 2008). 

These findings have resulted in Taylor et al. (2008) constructing the binary explicit and implicit 

social support, the latter referring to “the emotional comfort one can obtain from social networks 

without disclosing or discussing one‟s problems vis-a-vis specific stressful events” (p. 832).  

In large part, these studies and explanations reinforce the East-West, individualistic-

collectivistic binaries that many scholars have come to rely. What remains lost in this massive 

body of research are the voices of individuals who struggle in their lives and either embrace or 

turn away from their social resources. In spite of what we know about the relative tendencies of 

large ethnic populations, our understanding of the complex experiences of the individual remains 

unexplored. What discourages an individual from seeking support? How does someone‟s 

perception of social support change when experiencing a life-threatening illness or the transition 

of immigrating to a new country? What forms of support are most meaningful? Clearly, more 

research is needed to unravel these complex inquiries. 

Beyond these inquiries, however, exist a more fundamental concern arising from studies 

that attempt to make generalizations based on comparison groups that are arbitrarily constructed. 



   

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What is an Asian American? I find myself wondering. What are the common traits or 

experiences that supposedly characterize this group? I suspect that there may be no easy answer 

to these questions. Even if such questions are overlooked, one is left to wonder about the clinical 

utility of knowing that, on average, people of Asian ethnicity are more reluctant to seek out 

social support. How would an Asian American cancer patient that I am supporting be similar to 

the Asian Americans and different from the Euro-Americans that are represented in these studies? 

In order to better understand people‟s experience of cancer, research efforts need to adopt a more 

person-centered, exploratory approach that acknowledges the profound impact of our individual 

cultures. 

B.3.4 Summary of the culture of cancer. 

The literature suggests that young adults may face significant struggles during their 

cancer ordeal, and given their transitional stage in life, these struggles may be uniquely difficult. 

In providing service to young adults with cancer, the challenge, then, for medical and mental 

health professionals is in understanding the experiences of this age group. Moreover, a 

substantial body of literature has underscored the importance of social support and its cultural 

contextualization. Where mobilizing the social resources of cancer patients becomes an integral 

component of holistic cancer care, medical and mental health professionals must be aware of the 

complex role of culture in support seeking.  

 

B.4 Summary of Literature Review 

In all, the world of an IYA with cancer may be filled with turbulence and uncertainty. 

Presently, there exists no literature to guide our understanding of the experiences of this 

population. Scholars and practitioners may only piece together a rough understanding using 



   

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associated literature. Often these research efforts overlook the experience of young adults and 

immigrants. An increased understanding of the experiences of IYA with cancer from a person-

centered and culturally-sensitive lens becomes a necessary component of providing them the 

most appropriate, effective care possible (Kagawa-Singer & Blackhall, 2001). 

The current research is situated at the interface of three major transitions in an 

individual‟s life; settling in a new country, becoming an adult and experiencing a life-threatening 

illness like cancer. Adjusting to these transitions is often difficult and fraught with pressures and 

conflict. Mental health practitioners and caregivers who seek to effectively support individuals 

during these trying times must be well informed about the experience of individuals engaged in 

these transitions. Regrettably, to date, research attention has focused primarily on adolescents 

and adults with relative neglect for the transitional period referred to as emerging adulthood. 

What is more, research has largely been of a positivistic-quantitative paradigm that sorts them 

into arbitrarily constructed ethnic categories and in the process, leaves out the voices of the 

individual. 

  



   

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Appendix C 

Conceptualizing “Culture” and the Self 

Our increasingly mobile and electronically interconnected world has afforded people 

from different backgrounds unprecedented opportunities to interface. Within this world, the term 

“culture” is casually and pluralistically referred to. Exchanges between two individuals or groups 

from different parts of the world are referred to as cross-cultural exchanges. Neighbourhoods or 

cities can differ in the degree to which they are multicultural. Within popular and academic 

circles alike, multiculturalism is a desirable social phenomenon that encourages people to 

consider life from a different perspective and develop empathy for a fellow human being 

(Fowers & Richardson, 1996). People can be of high or low culture. They can be straddling two 

cultures, go back to their cultures or even have no culture. Multiculturalism is, in fact, “alive and 

well”. Our everyday existence is filled with “culture” and yet it remains a term that is poorly 

understood.  

Even within cultural-anthropology and -psychology scholarship, there exists different 

conceptualizations of the term culture (Geertz, 1973; Mead, 1971). Contemporary scholars have 

also debated the similarities and differences between culture and related constructs such as race 

and ethnicity (American Psychological Association, 2002; Helms & Talleyrand, 1997; Phinney, 

1996). This pervasive neglect in explicitly defining culture can spawn significant confusions 

about what exactly a writer, reporter or casual discussant is claiming. Given the centrality of 

culture within the proposed research inquiry, I believe that it would be useful for audiences of 

this research to understand my own concept of culture. In the section that follows, I wish to 

present my interactions with the term as a social construction and then contextualize these 

experiences within past scholarships. 



   

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In order to personally define culture, I find myself thinking about all that culture is not. 

For me, culture is not a collection of people of similar traits or backgrounds; nor is it a descriptor 

applied to an individual or group. I believe that one ought not be able to physically point to a 

culture or construct one by delineating ephemeral boundaries around a set of people or a place. It 

seems inappropriate and illusory to describe people as “belonging to culture X”, “marginalized 

by culture Y” or “having their feet in two cultures”. Such statements are perhaps most 

problematic when considering the difficulty of the semantic enterprise of defining with any 

degree of precision a cultural label like “Asian” or “collectivistic” or “masculine”. Given the 

plurality and fluidity of our personal identity, it would be difficult to identify someone as 

belonging to one or more of these categories (Christopher & Bickhard, 2007).  

Considering these difficulties, I find that I am only able to speak sensibly of culture in the 

past tense similar to the way I speak of memories, heritage or ancestry. Thus, in my mind, a 

culture is a related collection of antecedents that dynamically influence and shape our present 

personhood. We may have more than one and perhaps an infinite number of cultures. To say that 

“I am of Chinese culture” is to subjectively refer to a collection of antecedents – such as 

memories of living in China, teachings from my parents, Confucian belief systems, familial 

values, cooking and eating practices – that influence my current actions and reactions. I may also 

be of a graduate student culture, which refers to another collection of antecedents. Thus, the 

referential framework for this conceptualization of culture is defined by past common 

experiences, not socio-political or geographical boundaries. 

Geertz‟s (1973) view of culture is perhaps most closely aligned with my own. He wrote 

that culture “denotes a historically transmitted pattern of meanings embodied in symbols, a 

system of inherited conceptions expressed in symbolic forms by means of which men 



   

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communicate, perpetuate, and develop their knowledge about and attitudes toward life” (p. 89). 

It may be argued that this description neither makes an allusion to nor entails the notion of 

culture as a “shared” experience as many scholars describe (Fowers & Richardson, 1996; Kwak 

& Berry, 2001; Phinney et al., 2000). In my mind, culture is not shared: We do not “belong to a 

culture” in the same way as we might have membership in an organization. Instead, culture is 

shared by two people in so far as they report antecedents that have similarly shaped their lives. 

For example, my experiences growing up in Nova Scotia have instilled in me an appreciation and 

openness to strangers that I might share with others of East Coast culture.  

Juxtaposed against culture is the term, ethnicity. Whereas I understand culture to be 

personally-defined and situated in past experiences, I consider ethnicity to be more socially 

constructed. Ethnicity is something that can be physically pointed to, often with geopolitical 

boundaries as a frame of reference. For example, I am of Nova Scotian, Canadian and Asian 

ethnicities. It would therefore be appropriate to use ethnicity as a label or description of an 

individual. That is, to self-identify as being of Chinese ethnicity is equivalent to describing 

myself as having been born and raised in China. In referring to a group of people as being of 

Asian ethnicity is an objective claim that is not entirely informative in understanding the 

influences that have shaped a person to be what he or she is today.  

Thus, it is the endeavour of this proposed project to understand the contextualized culture 

of IYAs with cancer. Despite the incredible uniqueness of each individual‟s experience of cancer, 

this study is premised on the belief that there exists a culture – some collection of antecedents – 

that underlies the experiences of individuals with cancer: To mention cancer is to conjure up 

feelings of pain, uncertainty and fear. To refer to someone as a cancer survivor is to recognize 

the struggles an individual has endured and to sympathize and admire their courage.  



   

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A number of conceptualizations of culture seem to be consistent with my own. Gramsci 

(1971) describes understanding oneself as necessitating a recognition of the self “as a product of 

the historical process to date, which has deposited in [the self] an infinity of traces, without 

leaving an inventory” (p. 324). Gramsci‟s image is both rich and heuristic. It suggests that the 

process of self-understanding involves “compiling an inventory” of these “infinite traces” or 

cultures that become imprinted in the self. 

Thus, the self has been imprinted on by past experience. This being said, I believe that it 

is inaccurate to view the self as a mere computer that executes actions based on programs. Rather 

than being a passive recipient of our cultural experiences, I believe that we possess an incredible 

amount of agency. Our culture is dynamic: The antecedent experiences operate with different 

salience at different times depending on the context. As Frank (2001) vividly describes, we are 

like mapmakers.  

Culture is not simply a cognitive map that people acquire, in whole or in part, more or less 

accurately, and then learn to read. People are not just map-readers: they are map makers. 

People are cast out into imperfectly charted, continually shifting seas of everyday life. Mapping 

them out is a constant process resulting not in an individual cognitive map, but in a whole chart 

case of rough, improvised, continually revised sketch maps. Culture does not provide a cognitive 

map, but rather a set of principles for map making and navigation. Different cultures are like 

different schools of navigation designed to cope with different terrains and seas. (p. 44-5) 

As such, we not only choose the maps that we read, we create the maps that we chose. Culture is 

thus a dynamic concept and the self is an active agent in its construction. 

In summary, I perceive a person‟s culture to be a related collection of antecedents or past 

experiences that have shaped (or imprinted) ones current personhood. The process of self-

understanding involves taking an inventory of these antecedents. This conceptualization of 



   

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culture informs the current research inquiry. In order to understand the current experiences of 

IYA with cancer, the experiences will need to be contextualized within the participant‟s personal 

cultures. By consequence, a central task of this research will be to provide participants the space 

to engage in their inventorying process. 

  



   

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Appendix D 

Culture-Gram 

  



   

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Appendix E 

Journal Entry: Privilege and Responsibility 

Location: Hotel  

2011/01/27 3:30 PM 

Attended experiential workshop entitled “Standing Target and Shifting Privileges: 

Exploring Our Power, Privilege and Access to Resources”, facilitated by two members of an 

anti-oppression community advocacy group in California. I was attracted to the title given my 

recent self-reflections catalyzed by the culture-gram exercise. This workshop gave me a chance 

to further explore this notion of privilege and how it relates to my personal identity.  

The facilitators defined the terms oppression and privilege (which involves the 

distribution of power, access, opportunity, resources, etc.), and identified the “four pillars of 

oppression” (i.e., how oppression is maintained). I was aroused to the idea that privilege 

maintains oppression, that there is both a progenitor and target of oppression and that there is a 

system that maintains oppression. It was quite thought provoking to consider that both the 

privileged and targeted group collude to maintain this power relationship. The target-oppressed 

group may for example approximate the privileged group in order to access power and privilege. 

“It takes two to tango”, as the saying going. 

Then, it was onto the exercise. The facilitators prefaced it by saying that we may easily 

identify the areas in our lives where we have experienced oppression, but that we often don‟t 

reflect on our privileges. They in turn invited us to identify the privileges that I have been 

advantaged by over the course of my life that have led me to where I am today. What a paradigm 

shifting exercise this was! My eyes opened to the many privileges that are part of my life that 

have allowed me to get to where I am today. Privileges of being financially stable, well-educated,  



   

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male, heterosexual, cisgendered, an adult with good health, a stable family nucleus and living in 

a democratic and free society. A wave of gratitude overcame me that caused my body to shiver. 

How wonderful my life has been, I reflected. How privileged I have been. I imagined how 

different my life would have been had I been female, or questioned my sexuality, or less 

financially stable or had a medical condition that prevented me from enjoying the many physical 

activities that I do.  

My gratitude was quickly displaced by an outwardly sympathy for those who do not 

enjoy these privileges and suffer the incapacitating forces of oppression. I thought about those 

many immigrants who have recently come to this country, do not have high linguistic 

proficiencies or do not have the knowledge to effectively navigate social institutions in Canada; 

and the immense difficulties that they face. 

The reflections that group members subsequently shared was equally profound. One 

individual noted the interplay between her oppressed and privileged identities, and her 

conflicting emotions towards confronting her own privileges. These experienced resonated with 

me. In recognizing my privileges, and therefore feeling gratitude and sympathy, and therefore 

guilt, I struggle with how I am to proceed. I cannot disown the privileges that I own; they are a 

part of me whether I wish to be associated with them or not. The alternative then would be to 

embrace these privileges, and yet such an action may risk further oppression of others, given the 

intimate bidirectionality of the privilege-oppression relationship. I feel paralyzed. How do I 

proceed?  

Amidst this paralysis, I thought about that adage, “With great power comes great 

responsibility.” The idea of taking responsibility, of taking action, of being an agent for change 

has been increasingly at the forefront of my mind. I do feel a sense of responsibility to help those 



   

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who confront social and institutional challenges by virtue of their minority status and 

marginalization. I am educated, skilled as a professional, can communicate in English with a 

certain fluency. I am therefore well positioned to enact change. This line of thinking brings me 

out of a position of paralysis and guilt, and into a position of empowerment. 

Other group members remarked that privileges can be both as a result of perception (e.g., 

female beauty) or earn through hard work (e.g., financial security). Moreover, it seemed that it is 

our perceived privileges that result in our sense of guilt. This also resonates with me. I reflect on 

my relationship with my parents, my indebtedness to their sacrifices and experienced hardships, 

all to set up these opportunities that I have. I am reminded of D.W. Sue‟s poignant baseball 

metaphor depiction of privilege. “George W. Bush thought he had hit a triple, but in fact, he was 

born on third base.” 

Although I have not hit a homerun, I am already on base, and for that I feel indebted and 

responsible to my parents.  

The Confucian virtue of filial piety or respect for ones parents and ancestors, seems to 

capture motivations. Then again, I experience a certain disconnect with Confucian‟s teaching or 

perhaps preaching of filial piety. It is done out of simple duty, because someone deems it 

important, whereas for me it is an internal drive. The Confucian teaching lacks an effect on me; 

in fact, I would go so far as to reject it as the very act of following it robs me of my own genuine 

desire to carry it out. How do I respect my parents though merely adhering a social tradition or 

following a teaching? I cannot. I would be demonstrating respect in action but lacking respect in 

emotion. 

One group member referred to these “unearned” privileges as having been “stolen”. The 

word “stolen” jars me out of my introspective state. It sounds harsh, even criminal. The word 



   

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implies a relational action, a thief stealing from a victim. In a way, this might be true for I am 

indeed realizing resources, power and opportunities at the expense of another. The others are the 

countless others who continue to be oppressed, to be marginalized. And yet, how do I steal from 

someone who has never had resources, power and opportunities in the first place. No, I am not 

stealing from the oppressed. 

What about stealing from the privileged group? Am I stealing from a dominant majority 

their privileges? How could that be? It is not as though the privileged are somehow entitled to 

their privileges, that the resources, power and opportunities are theirs to own. They merely play 

out their lives based on the cards that they are dealt. No, I am not stealing from the privileged 

either. For me, I am using playing with the cards that I have been dealt.  

In doing so, I am cautious of not bestowing a heavenly mandate upon myself. I do not 

want to be the person who will fix things or make things better. I am cautious to not assume on 

this self-righteous attitude, for who am I really to do so. In lessons learned from a deconstruction 

of colonial practices (Said, 1979), I recognize the dangers of meaning well and doing research.  

In the end, I am still unsure what my role is as a health care provider to immigrants and 

young adults with cancer. I recognize what I don‟t want to do and what I can‟t do but I am 

confused as I have remaining the void of what I can and should do.



   

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Appendix F 

Genogram 

 



   

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Appendix G 

My Life Values 

Definition: 

 “A principle, standard, or quality considered worthwhile or desirable” (The American 

Heritage Dictionary of the English Language, 2000). 

 “Cultural values are what you are encouraged to strive for and are encoded in moral 

standards by which your behaviors and thoughts are publically and privately sanctioned” 

(Chang, 2008, p.98). 

 

Autonomy: the right of each individual to self-determination, to live as one so chooses – 

regardless of how they may be perceived by others – so long as one‟s actions do not harm others 

 

Generativity: the responsibility of each individual to contribute to improving rather than 

destroying his/her social, physical and ecological surroundings 

 

Authenticity: the importance of representing ones true self in the world and to other people, and 

the parallel exploring of oneself to understand ones true self  

 

Industriousness/Diligence: the importance of working hard, planning ahead, being self-driven 

to realize long-term goals as opposed to fleeting, immediate desires 

 

Humility: the importance of neither looking up nor down to any individual, regardless of 

education level, social class, financial situation or institutional position  



   

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Appendix H 

Timeline of Major Life Experiences Related to Cancer and Dying  

I select physical and symbolic border –crossing experiences in my life because they 

challenged my presuppositions and perspectives at the time they happened, have sometimes 

derailed me from my comfort zone, have broadened the horizon of my life, and have shaped me 

as a multicultural educator. Each entry identifies a border-crossing experience, then in 

parentheses briefly describes its effect on me. 

 

1990/08 Moved to Halifax, Nova Scotia, Canada from Shanghai, China (being supplanted 

into an entirely foreign cultural context, disconnected from significant cultural ties 

except for my parents) 

1990-2007  Growing up in Nova Scotia (growing up as an outsider, bearing the responsibility 

of having to negotiate a new cultural surrounding on my own) 

1995/07 Travel back to China for the first time after moving to Canada and returning 

regularly thereafter (realization that I had become a stranger in the land that was 

born in, the cultural context that I had left felt more foreign than familiar) 

2001/09/11 Terrorist attacks in the United States (realizing that my life does not exist in an 

idyllic vacuum and can be profoundly transformed in an instant) 

2002-2007 Served as property manager for family‟s rental property (maturing quickly and 

assuming responsibility for things normally relegated to adults) 

2000/01 High school peer dies in a boating accident (increasing salience of the finitude of 

life, experience of a public grieving process) 

2000/07/10  My grandfather dies of old age (my first experience with death in the family)  



   

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2004/12 Accompanied Nímāmā during her cancer treatment at Johns Hopkins (first 

personal experience with cancer in my family) 

2005/04/18 Nímāmā passes away of cancer (my first experience with death where I felt a 

strong connection with the person) 

2004-2006  Work in a cancer research lab during my undergraduate degree (learn about the 

biological mechanism of cancer and that my interests existed elsewhere) 

2006/08 My mother tells me that I had an older sister who died at birth (I become aware of 

the special place I occupy in my family and in the eyes of my parents) 

2006/12 Write statement of intention for admission application to the Counselling 

Psychology program (acknowledging to myself that my career transition has been 

in large part motivated by my experience in caring for Nímāmā with cancer)  

2007/08 Move to Vancouver (first experience living in a multiethnic society, first time 

living on my own, apart from my family) 

2007/09 Begin graduate studies in Counselling Psychology (undertaking a major career 

and life transition, opportunity for self-reflection) 

2007/10 Submit national scholarship application (first public admission of intentionality to 

engaging in career/research activities in cancer care) 

2007/11 Discuss suicide assessment in class (being awakened to the possibility of 

supporting people who may be contemplating death) 

2010/04 Attend training workshop for BCCA/Hospice care volunteers (being introduced to 

the idea that through confronting death, we learn how to live) 

2010/09/18 Cycling accident (became frighteningly awakened to my own physical

 vulnerability and mortality, and the possibility of a physically disabled life)  



   

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Appendix I 

Data Log 

ID Date Time Location Activity/Item Type Participants Code 
001 01/12/09 10:57 AM Online Email communication David Data collection 

002 20/01/10 4:09 PM Online Email communication David Planning 

003 01/02/10 12:47 PM Online Email communication FC Planning 

004 01/02/10 2:45 PM Online Email communication David Planning 

005 02/02/10 10:52 PM Online Email communication David Planning 

006 02/02/10 10:56 PM Online Email communication FC Planning 

007 03/02/10 10:36 AM Online Email communication HR Planning 

008 04/02/10 8:22 AM Online Email communication David Planning 

009 04/02/10 10:42 AM Online Email communication JD Planning 

010 04/02/10 11:42 AM Online Email communication HR Planning 

011 04/02/10 12:44 PM Online Email communication David Planning 

012 04/02/10 1:37 PM Online Email communication RD Planning 

013 07/02/10 9:26 AM Online Email communication David Planning 

014 08/02/10 9:14 AM Online Email communication HR Planning 

015 09/02/10 4:07 PM Online Email communication RD Planning 

016 11/02/10 8:49 AM Online Email communication David Planning 

017 11/02/10 9:16 AM Online Email communication HR  Planning 

018 01/03/10 8:34 AM Online Email communication David Planning 

019 02/03/10 10:03 AM Online Email communication RD Planning 

020 05/03/10  Waterfront Journal entry David Reflection 

021 09/03/10 9:58 AM Online Email communication David Planning 

022 09/03/10 12:23 PM Online Email communication RD Planning 

023 25/03/10 2:32 PM Online Email communication David Planning 

024 25/03/10 2:47 PM Online Ethics application Marla, David Planning 

025 26/03/10 7:02 AM Online Ethics application Bill Borgen Planning 

026 26/03/10 8:33 AM Online Email communication RD Planning 

027 31/03/10 1:36 PM Online Email communication JM Planning 

028 06/04/10 2:41 PM Online Email communication JM Planning 

029 07/04/10 8:21 AM Online Email communication David Planning 

030 13/04/10 6:00 PM Meeting room Volunteer training Volunteers Data collection 

031 13/04/10   Textual artefact  Data collection 

032 13/04/10   Textual artefact  Data collection 

033 13/04/10   Textual artefact  Data collection 

034 13/04/10   Textual artefact  Data collection 

035 13/04/10   Textual artefact  Data collection 

036 13/04/10   Textual artefact  Data collection 

037 13/04/10   Textual artefact  Data collection 

038 13/04/10   Textual artefact  Data collection 

039 13/04/10   Textual artefact  Data collection 

040 15/04/10 11:00 AM Office Meeting Amanda, David Planning 

041 15/04/10 2:21 PM Online Email communication David Planning 

042 15/04/10 6:00 PM Meeting room Volunteer training Volunteers Data collection 

043 16/04/10 5:53 AM Online Email communication David Planning 

044 16/04/10 10:49 AM Online Ethics application BREB Planning 

045 16/04/10 1:25 PM Online Email communication Marla Planning 

046 17/04/10 7:24 AM Online Email communication David Planning 

047 17/04/10 9:00 AM Meeting room Volunteer training Volunteers Data collection 

048 19/04/10 9:48 AM Online Email communication LK Planning 

049 19/04/10 9:59 AM Online Email communication David Planning 



   

207 

ID Date Time Location Activity/Item Type Participants Code 
050 19/04/10 1:16 PM Online Email communication David Planning 

051 19/04/10 3:50 PM Online Email communication Amanda Planning 

052 19/04/10 8:56 PM Online Email communication Marla Planning 

053 20/04/10 8:29 AM Online Email communication Amanda Planning 

054 20/04/10 1:03 PM Online Email communication LK Planning 

055 20/04/10 6:00 PM Meeting room Volunteer training Volunteers Data collection 

056 21/04/10 7:15 AM Online Email communication David Planning 

057 21/04/10 2:11 PM Online Email communication Amanda Planning 

058 22/04/10 6:00 PM Meeting room Volunteer training Volunteers Data collection 

059 24/04/10 9:00 AM Meeting room Volunteer training Volunteers Data collection 

060 26/04/10 10:33 AM Online Email communication David Planning 

061 26/04/10 11:00 AM Online Email communication David Planning 

062 26/04/10 5:26 PM Online Ethics application Marla, David Planning 

063 27/04/10 3:33 PM Online Email communication Amanda Planning 

064 28/04/10 9:30 AM Online Email communication Marla Planning 

065 29/04/10 11:38 AM Online Email communication David Planning 

066 29/04/10 12:01 PM Online Email communication David Planning 

067 29/04/10 2:57 PM Online Email communication Amanda Planning 

068 30/04/10 9:32 AM Online Email communication David Planning 

069 30/04/10 9:55 AM Online Email communication David Planning 

070 30/04/10 10:01 AM Online Email communication Amanda Planning 

071 04/05/10 3:17 PM Online Email communication LK Planning 

072 04/05/10 4:46 PM Online Email communication David Planning 

073 04/05/10 8:45 PM Online Email communication David Planning 

074 05/05/10 8:55 AM Online Email communication David Planning 

075 05/05/10 9:16 AM Online Email communication MF Planning 

076 06/05/10 11:18 AM Online Email communication David Planning 

077 07/05/10 10:55 AM Online Email communication David Planning 

078 07/05/10 11:16 AM Online Email communication David Planning 

079 07/05/10 2:50 PM Online Email communication MP Planning 

080 10/05/10 12:55 PM Online Email communication David Planning 

081 10/05/10 4:44 PM Online Email communication MP Planning 

082 11/05/10 7:46 AM Online Email communication David Planning 

083 11/05/10 9:13 AM Online Email communication LK Planning 

084 12/05/10 10:22 PM Online Email communication MP Planning 

085 13/05/10 8:20 PM Online Email communication David Planning 

086 17/05/10 8:52 AM Online Email communication CN Planning 

087 17/05/10 4:10 PM Online Ethics application BREB Planning 

088 18/05/10 11:18 AM Online Ethics application David Planning 

089 19/05/10 8:30 AM BCCA Volunteer training BCCA volunteers, David Data collection 

090 31/05/10 9:34 AM Online Email communication David Planning 

091 31/05/10 10:48 AM Online Ethics application BREB Planning 

092 01/06/10 7:51 AM Online Email communication David Planning 

093 02/06/10 7:58 AM Online Email communication LK Planning 

094 02/06/10 10:01 AM Online Email communication Amanda Planning 

095 02/06/10 11:01 AM Online Email communication David Planning 

096 02/06/10 11:36 AM Online Email communication LK Planning 

097 02/06/10 11:41 AM Online Email communication David Planning 

098 03/06/10 9:30 AM Online Email communication CNPS Program Planning 

099 03/06/10 8:52 PM Online Email communication Marla Planning 

100 09/06/10 7:03 AM Online Email communication David Planning 

101 10/06/10 9:15 AM BCCA Volunteering David Data collection 

102 10/06/10 9:15 AM BCCA Volunteering David Data collection 



   

208 

ID Date Time Location Activity/Item Type Participants Code 
103 10/06/10 9:20 AM Online Email communication Amanda Planning 

104 10/06/10 11:13 PM Online Email communication David Planning 

105 10/06/10  BCCA Field notes David Reflection 

106 10/06/10  BCCA Field notes David Reflection 

107 11/06/10 10:12 AM Online Email communication JM Planning 

108 11/06/10 11:06 AM Online Ethics application David Planning 

109 11/06/10 12:54 PM Online Ethics application BREB Planning 

110 11/06/10 2:27 PM Online Ethics application David Planning 

111 13/06/10 8:19 PM Online Email communication David Planning 

112 14/06/10 1:30 PM BCCA Meeting GM, Amanda, David Planning 

113 15/06/10 8:51 AM Online Ethics application BREB Planning 

114 15/06/10 1:48 PM Online Email communication David Planning 

115 17/06/10 10:32 AM BCCA Volunteering David Data collection 

116 17/06/10  BCCA Field notes David Reflection 

117 15/07/10 9:30 AM BCCA Volunteering David Data collection 

118 15/07/10  BCCA Field notes David Reflection 

119 20/07/10 9:15 AM BCCA Meeting PFC staff, David Planning 

120 19/08/10 9:15 AM BCCA Volunteering David Data collection 

121 19/08/10  BCCA Field notes David Reflection 

122 26/08/10 9:15 AM BCCA Volunteering David Data collection 

123 26/08/10  BCCA Field notes David Reflection 

124 31/08/10 2:32 PM Online Email communication David Planning 

125 31/08/10 4:35 PM Online Email communication GM Planning 

126 31/08/10  Online Email communication David Planning 

127 01/09/10 9:47 AM Online Email communication David Planning 

128 01/09/10 9:51 AM Online Email communication David Planning 

129 01/09/10 9:52 AM Online Email communication GM Planning 

130 01/09/10 11:55 AM Online Email communication BG Planning 

131 02/09/10 7:20 AM Online Email communication David Planning 

132 02/09/10 7:31 AM Online Email communication David Planning 

133 02/09/10 9:25 AM BCCA Volunteering David Data collection 

134 02/09/10 9:34 AM Online Email communication BG Planning 

135 02/09/10  BCCA Field notes David Reflection 

136 03/09/10 11:03 AM Online Email communication GM Planning 

137 03/09/10 3:41 PM Online Email communication JB Planning 

138 03/09/10 4:09 PM Online Email communication CN Planning 

139 05/09/10 4:39 AM Online Email communication David Planning 

140 07/09/10 6:01 AM Online Email communication NB Planning 

141 07/09/10 9:12 AM Online Email communication KJ Planning 

142 07/09/10 9:43 AM Online Email communication DR Planning 

143 07/09/10 11:09 AM Online Email communication Amanda Planning 

144 07/09/10 11:36 AM Online Email communication David Planning 

145 07/09/10 11:48 AM Online Email communication David Planning 

146 07/09/10 12:08 PM Online Email communication David Planning 

147 07/09/10 3:30 PM Online Email communication BB Planning 

148 07/09/10 5:51 PM Online Email communication David Planning 

149 08/09/10 8:26 AM Online Email communication David Planning 

150 08/09/10 8:28 AM Online Email communication David Planning 

151 08/09/10 9:01 AM Online Email communication KJ Planning 

152 08/09/10 9:06 AM Online Email communication David Planning 

153 08/09/10 4:05 PM Online Email communication Amanda Planning 

154 09/09/10 10:30 AM BCCA Volunteering David Data collection 

155 09/09/10  BCCA Field notes David Reflection 



   

209 

ID Date Time Location Activity/Item Type Participants Code 
156 10/09/10 10:31 AM Online Email communication CN Planning 

157 10/09/10 3:36 PM Online Email communication CN Planning 

158 13/09/10 7:32 AM Online Email communication David Planning 

159 14/09/10 8:02 AM Online Email communication BB Planning 

160 14/09/10 3:00 PM Coffee shop Interview CN, David Data collection 

161 14/09/10 7:15 PM Online Email communication David Planning 

162 15/09/10 11:36 AM Online Email communication CN Planning 

163 15/09/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

164 16/09/10 7:54 AM Online Email communication David Planning 

165 16/09/10 8:43 AM Online Email communication David Planning 

166 16/09/10 10:16 AM Online Email communication David Planning 

167 16/09/10 10:45 AM BCCA Volunteering David Data collection 

168 16/09/10 11:44 AM Online Email communication KC Planning 

169 16/09/10 11:52 AM Online Email communication David Planning 

170 16/09/10 12:00 PM BCCA Meeting Nurses, David Planning 

171 16/09/10 10:12 PM Online Email communication David Planning 

172 16/09/10  BCCA Field notes David Reflection 

173 17/09/10 7:30 AM Phone Meeting KC, David Data collection 

174 17/09/10 12:19 PM Online Email communication David Planning 

175 17/09/10  Online Email communication KC Planning 

176 19/09/10 7:59 AM Online Email communication David Planning 

177 19/09/10 2:22 PM Online Email communication David Planning 

178 20/09/10 7:00 PM Phone Phone communication CN, David Planning 

179 21/09/10 8:34 AM Online Email communication David Planning 

180 21/09/10  Home Journal entry David Reflection 

181 22/09/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

182 22/09/10   Article  Data collection 

183 23/09/10 2:35 PM Online Email communication David Planning 

184 23/09/10 5:28 PM Online Email communication CN Planning 

185 25/09/10 11:00 AM Park Interview CN, David Data collection 

186 25/09/10  Park Field notes David Reflection 

187 28/09/10 1:26 PM Online Email communication ES Planning 

188 29/09/10 6:43 AM Online Email communication David Planning 

189 29/09/10 8:12 AM Online Email communication ES Planning 

190 29/09/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

191 29/09/10   Video  Data collection 

192 30/09/10 11:30 AM BCCA Volunteering David Data collection 

193 30/09/10  BCCA Field notes David Reflection 

194 05/10/10 8:44 AM Online Email communication David Planning 

195 06/10/10 3:58 PM Online Email communication Amanda Planning 

196 06/10/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

197 06/10/10 8:03 PM Online Email communication David Planning 

198 07/10/10 7:20 AM Online Email communication KC Planning 

199 10/10/10 2:28 PM Online Email communication CN Planning 

200 11/10/10 10:49 AM Online Email communication David Planning 

201 11/10/10 11:03 AM Online Email communication CN Planning 

202 11/10/10 11:21 AM Online Email communication David Planning 

203 11/10/10 11:35 AM Online Email communication CN Planning 

204 12/10/10 9:54 AM Online Email communication David Planning 

205 12/10/10 10:30 AM Online Email communication David Planning 

206 12/10/10 11:22 AM Online Email communication CN Planning 

207 12/10/10 12:17 PM Online Email communication LC Planning 

208 12/10/10 1:52 PM Online Email communication JM Planning 



   

210 

ID Date Time Location Activity/Item Type Participants Code 
209 12/10/10 8:45 PM Online Email communication David Planning 

210 13/10/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

211 13/10/10 7:00 PM Library Interview CN, partner, David Data collection 

212 14/10/10 9:24 AM Online Email communication David Planning 

213 14/10/10 11:46 AM Online Email communication LC Planning 

214 19/10/10  Home Journal entry David Reflection 

215 20/10/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

216 20/10/10  Home Journal entry David Reflection 

217 21/10/10 9:15 AM BCCA Volunteering David Data collection 

218 21/10/10  BCCA Field notes David Reflection 

219 25/10/10 9:47 AM Online Email communication BB Planning 

220 25/10/10 3:04 PM Online Email communication David Planning 

221 27/10/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

222 29/10/10 9:00 AM UBC Meeting Amanda, Marla, David Planning 

223 31/10/10 10:29 AM Online Email communication BB Planning 

224 02/11/10 8:30 AM Online Email communication David Planning 

225 02/11/10 8:37 AM Online Email communication Amanda Planning 

226 02/11/10 8:43 AM Online Email communication David Planning 

227 02/11/10 9:00 AM Online Email communication JM Planning 

228 02/11/10 9:14 AM Online Email communication David Planning 

229 02/11/10 9:23 AM Online Email communication David Planning 

230 02/11/10 9:52 AM Online Email communication Amanda Planning 

231 02/11/10 1:06 PM Online Email communication GM Planning 

232 02/11/10 3:47 PM Online Email communication BB Planning 

233 02/11/10 3:58 PM Online Email communication Amanda  Planning 

234 02/11/10 8:41 PM Online Email communication David Planning 

235 03/11/10 3:05 PM Online Email communication BB Planning 

236 03/11/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

237 03/11/10 6:47 PM Online Email communication David Planning 

238 04/11/10 2:00 PM BCCA Volunteering David Data collection 

239 04/11/10  BCCA Field notes David Reflection 

240 04/11/10 9:53 AM Online Email communication David Planning 

241 04/11/10 10:25 AM Online Ethics application Marla, David Planning 

242 04/11/10 10:31 AM Online Email communication PN1 Planning 

243 04/11/10 11:59 AM Online Email communication David Planning 

244 04/11/10 12:18 PM Online Email communication David Planning 

245 04/11/10 12:19 PM Online Email communication HR Planning 

246 04/11/10 12:28 PM Online Email communication David Planning 

247 04/11/10 12:37 PM Online Email communication David Planning 

248 04/11/10 12:59 PM Online Email communication David Planning 

249 04/11/10 1:12 PM Online Email communication David Planning 

250 05/11/10 2:16 AM Online Email communication David Planning 

251 05/11/10 9:30 AM Online Email communication DS Planning 

252 05/11/10 12:36 PM Online Email communication PN1 Planning 

253 05/11/10 2:34 PM Online Email communication Amanda Planning 

254 05/11/10 2:56 PM Online Email communication DS Planning 

255 05/11/10 3:38 PM Online Email communication David Planning 

256 05/11/10 3:42 PM Online Email communication Amanda Planning 

257 05/11/10 3:57 PM Online Email communication GM Planning 

258 06/11/10 3:14 PM Online Email communication David Planning 

259 09/11/10 9:46 AM Online Ethics application BREB Planning 

260 09/11/10 10:21 AM Online Email communication David Planning 

261 09/11/10 10:27 AM Online Email communication David Planning 



   

211 

ID Date Time Location Activity/Item Type Participants Code 
262 09/11/10 11:58 AM Online Email communication Marla Planning 

263 09/11/10 6:57 PM Online Email communication Marla Planning 

264 10/11/10 2:59 PM Online Email communication Amanda Planning 

265 10/11/10 4:00 PM Online Course meeting Social work, nursing students Planning 

266 11/11/10 8:05 AM Online Email communication David Planning 

267 11/11/10 11:09 AM BCCA Photograph  Data collection 

268 11/11/10 11:15 AM BCCA Volunteering David Data collection 

269 11/11/10  BCCA Field notes David Reflection 

270 15/11/10 8:54 AM Online Email communication KC Planning 

271 15/11/10 11:42 AM Online Email communication David Planning 

272 15/11/10 2:50 PM Online Email communication GM Planning 

273 15/11/10 4:27 PM Online Email communication GM Planning 

274 15/11/10 9:36 PM Online Email communication David Planning 

275 15/11/10 9:53 PM Online Email communication David Planning 

276 15/11/10 10:09 PM Online Email communication David Planning 

277 16/11/10 7:50 AM Online Email communication SK Planning 

278 16/11/10 8:35 AM Online Email communication GM Planning 

279 16/11/10 9:31 AM Online Email communication PN1 Planning 

280 16/11/10 9:53 AM Online Email communication KC Planning 

281 16/11/10 1:05 PM Online Email communication Marla Planning 

282 16/11/10 5:46 PM Online Email communication HL Planning 

283 17/11/10 8:53 AM Online Email communication David Planning 

284 17/11/10 8:59 AM Online Email communication David Planning 

285 17/11/10 9:05 AM Online Email communication Marla Planning 

286 17/11/10 9:23 AM Online Email communication David Planning 

287 17/11/10 9:30 AM Online Email communication David Planning 

288 17/11/10 9:51 AM Online Email communication David Planning 

289 17/11/10 10:37 AM Online Email communication LC Planning 

290 17/11/10 2:13 PM Online Email communication David Planning 

291 17/11/10 2:18 PM Online Email communication SK Planning 

292 17/11/10 4:00 PM Online Course meeting Social work, nursing students Reflection 

293 18/11/10 8:18 AM Online Email communication David Planning 

294 18/11/10 11:57 AM Online Email communication RW Planning 

295 19/11/10 11:33 AM Online Email communication KC Planning 

296 19/11/10 9:00 PM Online Email communication David Planning 

297 22/11/10 5:24 AM Online Email communication KC Planning 

298 22/11/10 9:41 PM Online Email communication SB Planning 

299 23/11/10 7:45 AM BCCA Interview SK, David  Data collection 

300 23/11/10 3:12 PM Online Email communication SK Planning 

301 24/11/10 8:25 AM Online Email communication David Planning 

302 24/11/10 8:31 AM Online Email communication David Planning 

303 24/11/10 9:03 AM Online Email communication PN1 Planning 

304 24/11/10 11:13 AM Online Email communication PN1 Planning 

305 24/11/10 2:35 PM Online Email communication David Planning 

306 24/11/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

307 24/11/10 9:03 PM Online Email communication David Planning 

308 25/11/10 3:30 PM House room Meeting DS, David Data collection 

309 25/11/10 5:25 PM Online Email communication PN1 Planning 

310 26/11/10 9:30 AM Phone Interview KC, David Data collection 

311 29/11/10 8:54 PM Online Email communication David Planning 

312 30/11/10 9:31 AM Online Email communication Amanda Planning 

313 30/11/10 12:08 PM Online Email communication Marla Planning 

314 30/11/10 9:25 PM Online Email communication David Planning 



   

212 

ID Date Time Location Activity/Item Type Participants Code 
315 01/12/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

316 02/12/10 10:15 AM BCCA Volunteering David Data collection 

317 02/12/10  BCCA Field notes David Reflection 

318 02/12/10 9:00 AM BCCA Meeting Amanda, David Planning 

319 02/12/10 11:30 AM BCCA Interview PN1, David Data collection 

320 02/12/10 3:04 PM Online Email communication Amanda Planning 

321 03/12/10 3:27 PM Online Email communication SK Planning 

322 03/12/10 4:14 PM Online Email communication PN2 Planning 

323 03/12/10 6:04 PM Online Email communication David Planning 

324 03/12/10 6:18 PM Online Email communication David Planning 

325 03/12/10 8:31 PM Online Email communication PN2 Planning 

326 04/12/10 9:30 AM BCCA Volunteering Other BCCA volunteers Data collection 

327 05/12/10 8:40 AM Online Email communication David Planning 

328 06/12/10 7:27 AM Online Email communication David Planning 

329 06/12/10 9:20 AM Online Email communication PN1 Planning 

330 06/12/10 9:23 AM Online Email communication GM Planning 

331 06/12/10 11:32 AM Online Email communication David Planning 

332 06/12/10 11:43 AM Online Email communication David Planning 

333 06/12/10 12:18 PM Online Email communication GM Planning 

334 06/12/10 6:12 PM Online Email communication David Planning 

335 06/12/10 7:09 PM Online Email communication PN2 Planning 

336 07/12/10 8:28 AM Online Email communication David Planning 

337 07/12/10 1:19 PM Online Email communication David Planning 

338 07/12/10 3:15 PM Online Email communication PN2 Planning 

339 07/12/10 6:30 PM Online Email communication David Planning 

340 08/12/10 10:09 AM Online Email communication CC Planning 

341 08/12/10 4:00 PM Online Course meeting Social work, nursing students Data collection 

342 15/12/10 8:28 AM Online Email communication David Planning 

343 15/12/10 10:00 AM Online Email communication Amanda Planning 

344 15/12/10 4:07 PM Online Email communication LK Planning 

345 15/12/10 8:42 PM Online Email communication David Planning 

346 16/12/10 9:27 AM Online Email communication David Planning 

347 16/12/10 9:30 AM BCCA Volunteering David Data collection 

348 16/12/10 10:15 AM Online Email communication Amanda Planning 

349 16/12/10 10:28 AM Online Email communication Amanda Planning 

350 16/12/10 10:30 AM Online Email communication Marla Planning 

351 16/12/10 10:31 AM Online Email communication Marla Planning 

352 16/12/10 12:03 PM Online Email communication AB Planning 

353 16/12/10 9:45 PM Online Email communication David Planning 

354 16/12/10  BCCA Field notes David Reflection 

355 17/12/10 1:04 PM Online Email communication David Planning 

356 23/12/10 9:30 AM BCCA Volunteering David Data collection 

357 23/12/10  BCCA Field notes David Reflection 

358 24/12/10 3:00 PM BCCA Volunteering David Data collection 

359 24/12/10  BCCA Field notes David Reflection 

360 04/01/11 10:00 AM BCCA Interview GM, David Data collection 

361 05/01/11 2:00 PM UBC Meeting Marla, David Planning 

362 08/01/11  Online Article Wall Street Journal Data collection 

363 08/01/11  Online Article Wall Street Journal Data collection 

364 10/01/11 8:56 AM Online Email communication David Planning 

365 10/01/11 8:57 AM Online Email communication David Planning 

366 10/01/11 9:42 AM Online Email communication JM Planning 

367 10/01/11  Online Podcast CBC Radio The Next Chapter Data collection 



   

213 

ID Date Time Location Activity/Item Type Participants Code 
368 10/01/11 9:41 AM Online Email communication JM Scheduling 

369 10/01/11 8:57 AM Online Email communication David Scheduling 

370 10/01/11 8:56 AM Online Email communication David Research planning 

371 11/01/11 8:34 AM Online Email communication David Planning 

372 11/01/11 3:04 PM Online Email communication David Planning 

373 11/01/11  Home Journal entry David Reflection 

374 11/01/11 5:05 PM Online Email communication David Planning 

375 11/01/11 3:04 PM Online Email communication David Planning 

376 11/01/11 4:28 PM Online Email communication Marla Planning 

377 11/01/11 2:35 PM Online Email communication Marla Planning 

378 12/01/11 3:14 PM Online Email communication David Planning 

379 13/01/11  Radio News CBC Radio Early Edition Data collection 

380 13/01/11 7:20 AM Home Journal entry David Reflection 

381 14/01/11 8:00 AM Online Email communication David Planning 

382 14/01/11 9:28 AM Online Email communication David Reflection 

383 14/01/11 10:27 AM Home Letter David Reflection 

384 14/01/11  Radio News CBC Radio Early Edition Data collection 

385 14/01/11  Online Article Wall Street Journal Data collection 

386 14/01/11 8:01 AM Online Email communication David Research planning 

387 15/01/11 12:15 PM Home Journal entry David Reflection 

388 16/01/11  Online Article Wall Street Journal Data collection 

389 17/01/11  Home Journal entry David Reflection 

390 18/01/11 10:20 AM Online Email communication David Planning 

391 18/01/11  Home Journal entry David Reflection 

392 18/01/11  Home Journal entry David Reflection 

393 19/01/11 8:16 PM Online Email communication David Planning 

394 20/01/11 6:32 PM Online Email communication David Planning 

395 20/01/11 10:50 AM BCCA Interview LK, David Data collection 

396 20/01/11 9:35 AM Bus stop Journal entry David Reflection 

397 21/01/11 11:30 AM UBC Conversation LP, David Data collection 

398 21/01/11  Home Journal entry David Reflection 

399 23/01/11 11:02 AM Beach Photograph  Data collection 

400 23/01/11 1:36 PM Home Journal entry David Reflection 

401 23/01/11 2:10 PM Home Journal entry David Reflection 

402 24/01/11 8:02 AM Online Email communication David Planning 

403 25/01/11   Grant application Marla, David Planning 

404 25/01/11 2:30 PM UBC Meeting Amanda, Marla, David Planning 

405 25/01/11 10:11 AM Online Email communication David Planning 

406 27/01/11  Seattle Conversation Attendees, David Data collection 

407 27/01/11  Seattle Journal entry David Reflection 

408 27/01/11 3:30 PM Seattle Journal entry David Reflection 

409 30/01/11 11:30 AM Home Journal entry David Reflection 

410 30/01/11 8:35 PM Online Email communication David Planning 

411 30/01/11 9:46 PM Online Email communication David Planning 

412 31/01/11 11:31 PM Online Email communication AK Planning 

413 01/02/11 7:18 AM Online Email communication David Planning 

414 01/02/11 8:23 AM Online Email communication David Planning 

415 01/02/11 1:23 PM Online Email communication RG Planning 

 



   

214 

Appendix J 



   

215 

Appendix K



   

216 

Appendix L 

Recruitment Brochure 

 

  



   

217 

 

 

 

 



   

218 

Appendix M 

Recruitment Flyer 

 

 

 

 

 

  



   

219 

Appendix N 

Initial Contact Letter 



   

220 

Appendix O 

 

  



   

221 

 

 

 

  



   

222 

 

 

 

 

 

 

 

  



   

223 

Appendix P 

 

 

  



   

224 

 

 

  



   

225 

Appendix Q 

 

 

 

  



   

226 

 

 

 

  



   

227 

Appendix R 

Journal Entry: Waiting 

Location: Bus stop 

2011/01/20 9:35 AM 

It is a snowy day. Cold but not bitterly so. The snow is coming down at a steady pace. As 

I head for the bus stop, I notice my feet slide with every step. Even with my hiking boots, every 

step is a struggle against inertia. I have to slow down. I have to lower my expectations for how 

fast I can go. That‟s okay. I have some time today. I am heading to the cancer agency to 

volunteer and to interview a participant. The latter is scheduled but not for a while yet. I have 

time. 

 I see a few buses drive by on the main drag as I walk towards the stop. Whereas on other 

days, I‟d feel anxious or disheartened that it might have been my bus, today I feel okay. I 

patiently approach the stop. Another bus is approaching in the distance. My senses become alert, 

ready to fish out my bus pass from my pocket. The sign gets bigger as it approaches. It is not my 

bus. I relax, stand down. Next one.  

Another two buses approach. The first one is an accordion bus, too big to be mine. The 

one after is out of service. The next is a 41. Wasn‟t the very first one that passed 41? I become 

suspicious. This is strange. The 41‟s can‟t be running twice as frequently as 33 at this time of day. 

A few more buses approach. None of them is my bus.  

The snow continues to fall. 

41 pass seems like every 3 minutes, twice two in a row. With every passing bus that is 

marked “Out of Service” or is not mine, I feel more and more disappointed and frustrated. It 

seems that every second one is out of service.  “Sorry” and “Out of Service” the sign would 



   

228 

alternate. “Sorry”. “Sorry, sorry.” Stop your apologizing, I want to lash out in anger. Just do 

something to change it. 

Early on, each coming bus brings with it a wave of hope. With each passing bus, the hope 

diminishes, becoming more and more jaded to it. I try to endure, to remain hopeful, to keep my 

spirits high. But one can only maintain hope for so long.  

A number of people arrive at the bus stop and board, heading on their way. I feel 

demoralized, distressed that I am being left behind, that they are leaving me behind, that life is 

leaving me behind. I am tempted to hop onto the next bus, any bus, just to get somewhere. I feel 

uneasy, impatient with this stagnation in my life. 

A sudden thought occurs to me. What if I don‟t ever get on a bus?! I begin to panic. My 

heart beats faster, louder. I feel it inside my chest, my rib cages hardly able to contain its panic. 

What if I don‟t ever get on a bus… There must be a mistake, I try to assure myself. The 33 bus 

driver forgot to switch their sign. A number of other scenarios enter my mind. An accident along 

the route. A cancellation of the service. Something, anything to explain these circumstances as 

being about somebody else; not about me, that I did something wrong, that Fate was upset with 

me. 

The snow continues to fall, more heavily it seems. Either that or my feelings are getting 

the better of me, accentuating the experience of reality. Weather accentuated by my feelings or 

not, it‟s getting colder. That‟s real for sure. Just from standing out here for so long, anybody 

would get colder. What were snowflakes have turned into drops of water on my jacket. Ice into 

water, solid into liquid, a process that requires energy. “In any isolated system, the total energy 

remains the same.” First law of thermodynamics. Energy, my energy. My god, the snow is 

stealing my energy! Anger, resentment. I despise the snow. 



   

229 

I try to calm down, to find some peace, some acceptance in these crazy circumstances. I 

jam my head a little closer towards the ceiling of the umbrella canvas to protect myself from the 

snow, as much protection as this pathetic little umbrella can afford me. I need more than an 

umbrella. I need warmth, a house, a fireplace, a hot cup of water to warm my hands. As I wait in 

silence, my senses attune to the constant crackle of snowflakes as they land on the canvas next to 

my ears. It‟s like I‟m inside a drum, trapped, with nothing but the reverberations of each strike of 

the surface to occupy me. With nothing else, I focus on the sounds. There is an occasional thuds 

as a particularly large clump strikes the canvas. I‟m stunned by the loudness. I reflect on how 

snow is supposed to be silent and yet in this state of existence, I perceive their fall. In this state of 

trapped-ness, the crackles and thuds is relieving. It feels calming, peaceful.  

“You‟re just distracting yourself,” says a little voice inside. “Nothing has changed.” 

“Yeah, but I like it,” another responds with gentle reverence. “I just want to stay 

distracted for a while.” 

 

I notice a twinkle in my right hand. It‟s clutching the umbrella handle, exposed to the 

elements. I wish I could shelter it as well but it‟s what‟s keeping the rest of me protected, or at 

least as much as my measly little umbrella is able. Beginning to feel the biting pain of the cold, 

my hand being at that transitional state after the point of comfort but before losing all sensation. 

It's that transitional state that is figuratively and literally the most painful to exist in. Strikes me, 

such parallels with the experience of cancer. 

My spirit weakens under the weight of each passing bus.  



   

230 

Consider leaving to pick up the 99 at the main loop several tines but afraid that it may 

come just as I leave, being left more disappointed by my own doing. So I remain there, 

foreclosing on any decision-making, even though that is a decision in itself. 

After 45 minutes, my bus finally appears. I stare down the flashing lights, unwilling to 

believe it at first. To believe it is to be set up for disappointment. But this time it is, for sure. A 

relief like no other I have ever experienced spreads through my entire body. I turn towards the 

stop to indicate my desire to board it, to seek its refuge, to continue on my journey. But 

something strange happens. The engine continues to roar, no indication of slowing down. It is 

only meters away. It has to stop now or else it won't be able to, it's momentum too great. A shock 

of terror rush through me, they are going to drive right by, my lifeline slipping through my 

desolate fingertips. I stick both arms out desperately to get attention. In fact it speeds up. I see 

my hope driving away. Ignoring my silent cries. I cry out in rage, then in anguish, then in 

destitute. No one responds. 

I feel like I want to cry out in frustration, in anguish. Actually, I just want to cry. 

I‟ve arrived at the 99. There are others waiting, some silently, others, talking with the 

people next to them. There is an occasional laugh. I revile such levity. I feel outraged that the 

world doesn't appreciate this abomination, this injustice. Life continues on, completely unaware 

of the injustice that has be done to me. 


	Abstract
	Preface
	Table of Contents
	List of Images
	Acknowledgements
	Dedication
	Chapter 1: Introduction
	1.1 Journey Beginnings
	1.2 Thesis Overview
	1.3 Research Question
	1.4 Deconstructing Culture and the Self

	Chapter 2: Methodology
	2.1 Orienting Worldview
	2.2 Auto/ethno/graphic Inquiry
	2.2.1 Rationale for adopting a qualitative ethnographic approach.
	2.2.2 Rationale for autoethnography.
	2.2.3 Situating myself.

	2.3 Collecting Data
	2.3.1 Roles.
	2.3.2 Methods and sources of data collection.

	2.4 Data Analysis
	2.4.1 Questions for reflexive analysis.


	Chapter 3: Stories
	3.1 Directions Emerging
	3.1.1 Arriving.
	3.1.2 Strangers meeting.
	3.1.3 Adrift.
	3.1.4 Connections.
	3.1.5 Where do I belong?
	3.1.6 Bearing it.
	3.1.7 Deep sleep.
	3.1.8 Misunderstandings.
	3.1.9 Bear bear.
	3.1.10 Auld lang syne.
	3.1.11 Evolving questions.
	3.1.12 Hope renewed and yet hope lost.
	3.1.13 Turning inward.

	3.2 Roles, Masks and this Divide Between Us
	3.2.1 Handling others with care.
	3.2.2 My critical voice.
	3.2.3 Drifting apart.
	3.2.4 Struggling to find the balance.
	3.2.5 Our cultural context and the divide between us.
	3.2.6 Language divides.
	3.2.7 Perceptions that divide.
	3.2.8 Finding clarity amidst confusion.
	3.2.9 Practice dying.
	3.2.10 Summary.

	3.3 Deconstructing the Health Care Provider
	3.3.1 Who are health care providers?
	3.3.2 Burdens on care providers.
	3.3.3 Volunteers as care providers.
	3.3.4 A willingness to respond.
	3.3.5 The many faces of care providing.
	3.3.6 Summary.

	3.4 Conversations with Nímāmā
	3.4.1 Juxtaposition of our two realities.
	3.4.2 Failing you.
	3.4.3 Protecting each other.
	3.4.4 Trying something different.
	3.4.5 Protecting ourselves.
	3.4.6 Someone who is simply present.
	3.4.7 Courage and strength.
	3.4.8 Your gift of pain.


	Chapter 4: Conclusion
	4.1 Implications for My Research Directions
	4.2 Implications for My Practice
	4.3 Implications for Social Policy
	4.4 Finally

	References
	Appendices
	Appendix A
	Appendix B
	Appendix C
	Appendix D
	Appendix E
	Appendix F
	Appendix G
	Appendix H
	Appendix I
	Appendix J
	Appendix K
	Appendix L
	Appendix M
	Appendix N
	Appendix O
	Appendix P
	Appendix Q
	Appendix R