CANCER AND THE FAMILY: DISTRESS AND QUALITY OF LIFE AMONG

CHINESE-SPEAKING PATIENTS AND FAMILY CAREGIVERS

by

Joyce Wai Kuan Lee

A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF

THE REQUIREMENTS FOR THE DEGREE OF

DOCTOR OF PHILOSOPHY

in

THE FACULTY OF GRADUATE AND POSTDOCTORAL STUDIES

(Population and Public Health)

THE UNIVERSITY OF BRITISH COLUMBIA

(Vancouver)

October 2016

© Joyce Wai Kuan Lee, 2016

Abstract

Background: Cancer is a family disease affecting the patient and family members. To date, few

studies have explored the psychological distress of family caregivers and its relation with patient

quality of life (QOL), particularly among culturally diverse cancer populations. This study seeks

to understand the associations between patient distress, family caregiver distress and patient

QOL in a Chinese-speaking population in British Columbia, Canada.

Methods: A cross-sectional survey of Chinese-speaking (study population) and Anglophone

(comparison group) patients (N = 55) and their family caregivers (N = 40) was used to examine

patient QOL and correlates. Multiple imputation of missing data for incomplete dyads resulted in

data for 29 Chinese-speaking and 28 Anglophone dyads. Multiple linear regression and

mediation analyses examined predictors of QOL, and its domains, and mediation effects of

patient distress and family caregiver distress. Semi-structured interviews with a subset of the

Chinese-speaking survey participants comprising ten patients and six family caregivers,

including five patient-family caregiver dyads, were also conducted. Analysis of culturally-

embedded experiences of patients and family caregivers regarding their distress and QOL was

conducted, to provide further context and explanation for the findings from the quantitative

analysis.

Results: Patient distress emerged as the key factor in explaining patient QOL. The effects of

patient age on patient emotional well-being were mediated by patient distress, such that lower

distress in older patients explained better emotional functioning. A key theme that surfaced from

the qualitative data analysis was the emotional regulation occurring in the family when coping

with cancer. The negative impact of family caregiver distress on patient emotional well-being

was acknowledged by both the patients and the family caregivers. Younger and older patient

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interviewees alike indicated anxiety and worries about the impact of their cancer diagnosis on

their families.

Conclusions: This study provides insights to Chinese-speaking patients’ and family caregivers’

illness experience and the interrelatedness of the dyads’ responses to cancer. In expanding our

knowledge of cross-cultural cancer care, these findings highlight the important role of cultural

background in shaping service needs and, in turn, service delivery to cancer patients and their

families.

iii
Preface

This dissertation is an original intellectual product of Joyce Wai Kuan Lee (J.L). The

work reported in this document was conceived, conducted and written by J.L., who

conceptualized the study design, collected all the data and performed the analysis of the data.

The study conceptual framework was adapted from Northouse and colleagues’ stress appraisal

model (Northouse et al., 2002). Questionnaires used to collect quantitative data were

standardized instruments: Kessler Distress Scale (Kessler et al., 2003) and Functional

Assessment of Cancer Therapy-G Scale (Cella et al., 1993). J.L developed the questions used in

interviews with the Chinese-speaking patients and family caregivers, in consultation with thesis

committee members. The research described in this dissertation was approved by the University

of British Columbia Behavioural Research Ethics Board (UBC BREB Number: H12-00812) and

Vancouver Coastal Health Research Institute (VCHRI Study Number: V12-00812).

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Table of Contents

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

Preface............................................................................................................................................ iv

Table of Contents .............................................................................................................................v

List of Tables ...................................................................................................................................x

List of Figures ................................................................................................................................ xi

Acknowledgements ....................................................................................................................... xii

Dedication .................................................................................................................................... xiii

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

1.1 Background ..................................................................................................................... 1

1.2 Study objectives .............................................................................................................. 4

1.3 Research questions .......................................................................................................... 5

1.4 Dissertation overview ..................................................................................................... 6

Chapter 2: Literature Review ...........................................................................................................7

2.1 Cancer and the patient ..................................................................................................... 7

2.1.1 Patient distress and quality of life ............................................................................... 7

2.2 Cancer and the family ..................................................................................................... 9

2.2.1 Role of the family caregiver in social support ............................................................ 9

2.2.2 Family caregiver distress .......................................................................................... 12

2.2.3 Patient and family caregiver adaptation to cancer .................................................... 15

2.3 Positives of cancer ........................................................................................................ 17

2.3.1 The patient experience .............................................................................................. 17

2.3.2 The family caregiver experience ............................................................................... 18

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 2.4 Cancer and a culturally diverse population ................................................................... 19

2.4.1 Health beliefs and help-seeking in cultural context .................................................. 19

2.4.2 Family caregiving in cultural context ....................................................................... 22

2.4.3 Caregiving in Chinese families ................................................................................. 23

2.5 Conceptual framework of the study .............................................................................. 26

Chapter 3: Methods ........................................................................................................................29

3.1 Study design .................................................................................................................. 29

3.2 Study participants.......................................................................................................... 31

3.3 Study procedure ............................................................................................................ 32

3.4 Quantitative methods .................................................................................................... 34

3.4.1 Objectives and hypotheses ........................................................................................ 35

3.4.2 Measurement instrument ........................................................................................... 36

3.4.2.1 Kessler Psychological Distress Scale (K6) ....................................................... 39

3.4.2.2 Functional Assessment of Cancer Therapy-General (FACT-G) ...................... 40

3.4.3 Variables formulation ............................................................................................... 41

3.4.4 Data structure and imputation ................................................................................... 43

3.4.5 Statistical analysis methods ...................................................................................... 47

3.4.5.1 Multiple linear regression ................................................................................. 47

3.4.5.2 Power analysis .................................................................................................. 50

3.5 Qualitative methods ...................................................................................................... 51

3.5.1 Objectives and phenomenon of interest .................................................................... 51

3.5.2 Analytical approach .................................................................................................. 52

3.6 Ethical considerations ................................................................................................... 56

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Chapter 4: Results ..........................................................................................................................58

4.1 Quantitative analysis ..........................................................................................................58

4.1.1 Sample description ........................................................................................................ 58

4.1.2 Bivariate analyses ......................................................................................................... 61

4.1.3 Multiple regression analyses ......................................................................................... 64

4.1.3.1 Direct effects of patient, illness-related, social/family and family caregiver factors

on patient QOL ..................................................................................................................... 64

4.1.3.2 Indirect effects of patient, illness-related, social/family and family caregiver factors

on patient QOL through patient and family caregiver distress ............................................. 71

4.1.4 Post hoc analyses .......................................................................................................... 79

4.1.5 Summary of quantitative analyses ................................................................................ 83

4.2 Qualitative analysis ............................................................................................................85

4.2.1 Description of interview sample ................................................................................... 85

4.2.2 Cultural understanding of cancer and disclosure of diagnosis...................................... 88

4.2.2.1 Misconceptions about cancer ............................................................................ 88

4.2.2.2 Tensions in disclosure ....................................................................................... 91

4.2.2.3 Support through disclosure ............................................................................... 92

4.2.3 Distress and emotional regulation in the family ........................................................... 94

4.2.3.1 Sources of patient distress ................................................................................. 94

4.2.3.2 Sources of family caregiver distress ................................................................. 96

4.2.3.3 Emotional regulation between patient and family caregiver ............................ 98

4.2.4 Approaches to family caregiving and quality of life .................................................... 99

4.2.4.1 The “right” family support .............................................................................. 100

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 4.2.4.2 Positives of cancer in the family ..................................................................... 101

Chapter 5: Discussion ..................................................................................................................104

5.1 Impact of patient distress on patient QOL .................................................................. 105

5.1.1 Sources of patient distress ....................................................................................... 106

5.1.2 Variation in the negative effects of patient distress across QOL domains ............. 107

5.1.3 Understanding the relation between cancer and social well-being ......................... 109

5.1.4 Connection of disclosure of cancer diagnosis and social support........................... 111

5.2 Mediating role of distress in patient QOL .................................................................. 112

5.3 Impact of family caregiver distress on patient QOL ................................................... 114

5.3.1 Sources of family caregiver distress ....................................................................... 115

5.3.2 Distress and emotional regulation in the family ..................................................... 118

5.4 Benefits of family caregiving and the positives of cancer .......................................... 120

Chapter 6: Conclusions and Recommendations ..........................................................................125

6.1 Summary of key findings ............................................................................................ 125

6.2 Strengths and limitations of dissertation ..................................................................... 125

6.3 Implications and knowledge translation ..................................................................... 127

6.4 Future research ............................................................................................................ 129

References ....................................................................................................................................132

Appendices ...................................................................................................................................141

Appendix A: Demographics/Background information questions ...............................................142

Appendix B: Kessler Distress Scale (K6), English version .........................................................143

Appendix C: Kessler Distress Scale (K6), Chinese version ........................................................145

Appendix D: Functional Assessment of Cancer Therapy (FACT-G), English version 4.0 .........147

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Appendix E: Functional Assessment of Cancer Therapy (FACT-G), Chinese version 4.0 ........149

Appendix F: Semi-structured interview script for Chinese-speaking patient ..............................151

Appendix G: Semi-structured interview script for Chinese-speaking family caregiver ..............152

Appendix H: Descriptive summary of 19 dyads with incomplete information ...........................153

Appendix I: Pearson correlations in combined sample................................................................154

Appendix J: Pearson correlations in Chinese-speaking group .....................................................155

Appendix K: Pearson correlations in Anglophone group ............................................................156

Appendix L Bivariate regression coefficients in combined sample ............................................157

Appendix M: Bivariate regression coefficients in Chinese-speaking group ...............................158

Appendix N: Bivariate regression coefficients in Anglophone group .........................................159

ix
List of Tables

Table 1: Variables description ...................................................................................................... 37

Table 2: Descriptive summary of patients and family caregivers in combined sample, Chinese-

speaking and Anglophone group .................................................................................................. 60

Table 3: Summary of bivariate associations with QOL total and QOL subscales for combined

sample (N=57) .............................................................................................................................. 62

Table 4: Summary of bivariate associations with QOL total and QOL subscales for Chinese-

speaking group (n = 29) ................................................................................................................ 62

Table 5: Summary of bivariate associations with QOL total and QOL subscales for Anglophone

group (n = 28) ............................................................................................................................... 63

Table 6: Main Hypothesis 1: Summary of multiple linear regression results............................... 67

Table 7: Main Hypothesis 2: Summary of multiple linear regression results............................... 72

Table 8: Summary of bivariate associations (correlations and regression coefficients) with QOL

total and QOL subscales (n = 38) ................................................................................................. 80

Table 9: Main Hypothesis 1: Summary of multiple linear regression results (n=38) ................... 82

Table 10: Characteristics of interview participants ...................................................................... 86

x
List of Figures

Figure 1: Conceptual framework of distress and quality of life among cancer patients and family

caregivers ...................................................................................................................................... 27

Figure 2: Power calculation for large and medium effect sizes in multiple regression ................ 50

Figure 3: Model 3a - Indirect effects of patient age on QOL total through patient distress,

combined sample .......................................................................................................................... 75

Figure 4: Model 3a - Indirect effects of patient age on QOL total through patient distress,

Anglophone group ........................................................................................................................ 75

Figure 5: Model 3b - Indirect effects of patient age on social well-being through patient distress,

combined sample .......................................................................................................................... 76

Figure 6: Model 3c - Indirect effects of patient age on emotional well-being through patient

distress, combined sample ............................................................................................................ 78

Figure 7: Model 3c - Indirect effects of patient age on emotional well-being through patient

distress, Anglophone group .......................................................................................................... 78

xi
Acknowledgements

The successful completion of this project is indebted to the institutions and individuals

who have rendered immense support in the course of my dissertation endeavour.

I am grateful for the financial support provided by the Western Regional Training Centre

for Health Services Research, University of British Columbia, Canadian Institutes of Health

Research and Canadian Frailty Network. I am also most thankful for the in-kind support I have

received from Trinity Western University.

My gratitude extends to the administrators and healthcare professionals for their

partnership in recruitment throughout the data collection phase of the project. Particularly, I want

to express my heartfelt appreciation to the patients and family caregivers for stepping forward to

share their illness experiences, in the midst of their cancer journey.

To my supervisor, Dr. Arminee Kazanjian, and my committee members, Drs. Carolyn

Gotay, Kirsten Bell and Richard Sawatzky, thank you for investing your knowledge and wisdom

in me through your affirming guidance.

To my mentors, thank you for your wise counsel and continuous encouragement, aspiring

me to pursue excellence in all my undertakings.

To my friends and family, thank you for upholding me with your unwavering care and

unceasing prayers.

To my parents, you are missed, and you will always be remembered for giving the best

of yourselves to others.

To the Author and Perfector of my faith, thank You for Your surpassing goodness and

faithfulness, bringing to completion that which You have begun in me.

xii
Dedication

To Yip-Poh Lee and Su-Ngoh Soh, who loved life, and lived it to the fullest.

xiii
Chapter 1: Introduction

1.1 Background

Cancer is a family disease, affecting not only individual patients, but also having a

substantial impact on the family (Kim & Given, 2008; Northouse, 2005). The psychological

distress of cancer patients is noted to be correlated with that of their family caregivers, even as

the levels of distress in patients and in family caregivers are found to be associated with

individual and illness factors such as age, gender, cancer stage and illness symptoms (Hodges,

Humphris, & Macfarlane, 2005; Lissandrello, Respini, & Tralongo, 2006). While past studies

have pointed to the positive correlations between cancer patient health-related outcomes and

patient perception of family support availability, relatively little is known about the association

between the quality of life (QOL) of patients and the psychological distress of their family

caregivers. To date, there is limited evidence on the psychological and social dimensions of

living with cancer, especially among culturally diverse populations. In view of the fact that the

impact of cancer on the family is embedded in the cultural and social context in which the

patients and the family caregivers are situated, understanding the cancer experience of patients

and families from non-English speaking populations is necessary for delivering culturally

appropriate care.

In Canada, visible minorities (persons, other than Aboriginal peoples, who are non-

Caucasian in race or non-white in colour, as per Statistics Canada report) constitute

approximately 16% of the national population, and this figure is projected to double to 31% by

2031 (Statistics Canada, 2011). Within British Columbia (BC), visible minorities comprise

26.5% of the province’s total population (Statistics Canada, 2006). Data from Census 2006

1
indicated that ethnic Chinese was the largest visible minority population group, constituting over

8% of BC’s total population. The data further suggested that in Metro Vancouver, this proportion

is much higher, at 14.8% of the total population; in the City of Richmond, 40% of the residents

are of Chinese ethnicity. Earlier Chinese immigrants to BC in the 1850s came from China

through the United States, following the discovery of gold in the Fraser Valley (Chui, Tran, &

Flanders, 2005). Changes in immigration law in the late 1970s were reflected in a growing

proportion of wealthy entrepreneurs from Hong Kong and Taiwan, with a surge in migrants from

Hong Kong particularly apparent in the decade prior to the handover to China in 1997. More

recently, immigrants have been predominantly middle-class, highly-educated Chinese from

Mainland China.

For Chinese-speaking patients and their families, adjusting to cancer may be distressing,

particularly when culture and language are not congruent with the mainstream model of care

delivery. Research regarding the impact of cancer on culturally diverse populations is urgently

needed, especially in cultural contexts where the family, rather than the individual, is the "basic

structural and functional unit" (Simpson, 2005, p. 671). Further, Simpson highlights that

assessment and intervention strategies in cancer care, based on Western concepts, may not be

appropriate for many such patients and their families, highlighting the critical need for culturally

appropriate care for diverse cancer populations in BC and Canada.

To develop culturally appropriate cancer care interventions, it is of paramount importance

to understand the cultural context of behaviours involved in both seeking and providing care. In

view of the current gaps in psychosocial-oncology research on Chinese families’ experience of

cancer, this study sought to investigate how cancer impacts Chinese-speaking families in the

province of BC. To provide the backdrop for interpreting findings from the Chinese-speaking

2
group, a comparison group of Anglophone-Canadian cancer patients and family caregivers from

BC was also included.

Notably, the definition of culture is complex, with a host of constructs including values,

beliefs, customs, religion, attitude, behaviour, knowledge, and language. Further, the nature of

culture is fluid and the process is dynamic (Almutairi, Dahinten, & Rodney, 2015). I have

selected the linguistic aspect of culture to define the population groups investigated in my

dissertation, in view of the challenges in operationalizing culture in cross-cultural studies.

Notwithstanding the complexities of its conceptualization, it is important to be cognizant of

neither essentializing nor trivializing culture, but to hold a flexible and balanced perspective of

cultures in studies involving diverse populations.

Having had experience with cancer in my family over the past three years, this topic is of

particular relevance and importance to my research endeavour. During the data collection phase

of my study, my mother, who was Chinese-speaking, was diagnosed with advanced stage lung

cancer. She passed away three months after her diagnosis. Two years after my mother’s death,

my sister was diagnosed with ovarian cancer. She was undergoing chemotherapy, at the time

when I was reporting my study findings. In my role as a daughter and a sister, I encountered

first-hand the distress of living with cancer in the family, where the cultural beliefs and values

regarding illness and help-seeking have served as facilitators as well as barriers in coping with

the disease. At the same time, my family also experienced the positives of cancer, of personal

growth and closer family relationships. The impact of cancer on the family is multi-facetted; it is

through ongoing research that we glean insights into such complexities, in order to provide

appropriate care for patients and their family caregivers.

3
1.2 Study objectives

This study investigated the impact of cancer on Chinese-speaking patients and their

family caregivers in BC, using a conceptual framework adapted from Northouse and colleagues’

Stress-Appraisal Model that examined the effects of person, social and illness-related factors on

the quality of life of patients and family members. In the study, the linguistic aspect was the key

descriptor of the study population, distinguishing between the Chinese-speaking and Anglophone

patients and family caregivers as representing two culture groups in the study. The overall goal

of the study was to examine the relations among factors thought to influence patient QOL, and

particularly the role of patient distress and family caregiver distress within the target group of

Chinese-speaking cancer patients.

By means of quantitative analysis, the study first sought to examine the direct effects of

factors relating to patient, illness-related, social/family and family caregiver on patient QOL. The

mediation effects of patient distress and family caregiver distress on patient QOL were also

investigated. To provide the background from which to interpret study results for the Chinese-

speaking group, a comparison group consisting of Anglophone-Canadian cancer patients and

family caregivers in BC were included in the study.

To examine the cancer experience of Chinese-speaking patients and their family

caregivers in relation to their psychological distress and to patient quality of life, semi-structured

interviews were conducted. The structural relationships of the key elements identified in the

study's conceptual framework were also investigated through qualitative analysis. Particularly,

the interrelatedness between patient distress and family caregiver distress on patient QOL was

explored through semi-structured interviews. During these interviews, clarification was sought

regarding family dynamics following the cancer diagnosis.

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1.3 Research questions

The key research question that underpins the quantitative analysis was: How do patient

and family caregiver distress levels relate to the quality of life of cancer patients in Chinese-

speaking populations? Following from this research question, the distress of patient and family

caregivers was hypothesized to be directly related to patient QOL. In addition, distress was

hypothesized to be indirectly related to patient QOL, mediating the effects of patient, illness-

related, social/family, and family caregiver factors on QOL. The variables of the factors

examined include age, gender, education, duration of migration, English fluency, cancer

site/stage, treatment type, family caregiver relationship to patient, and duration of caregiving.

For the qualitative analysis, the associated research questions were: How does cancer

impact patient and family caregiver psychological well-being in Chinese-speaking families?

How are patient distress and family caregiver distress related, and how do they affect patient

QOL? The findings from the qualitative analysis further explained the relations among patient

and family caregiver distress and patient quality of life, deepening our understanding of the role

family caregivers played while patients coped with the disease. While adding depth to the

analysis, qualitative findings also provide insights into the discrepancies in findings across

studies of cancer patient QOL (Leeman, Chang, Voils, Crandell, & Sandelowski, 2011). At the

same time, the study results furnish information regarding cancer care needs of culturally and

linguistically diverse populations, and serve as salient feedback to decision-makers and clinicians

on the development of patient and family-centred care.

5
1.4 Dissertation overview

This dissertation contains six chapters. Chapter 1 introduces the research topic, providing

the background, study rationale, study objectives and the research questions investigated. In

Chapter 2, a review of the literature pertinent to the research topic is presented. The chapter

begins with a discussion of the implications of a cancer diagnosis on the patients, expanding the

discourse to the impact of cancer on the family. It continues to explore issues patients and family

caregivers encounter in coping with cancer, while also highlighting aspects of the illness that

patients and family caregivers deem as beneficial experiences. The chapter transitions to the

cultural dimension of family caregiving, drawing attention to issues of caregiving in Chinese

families. In concluding Chapter 2, a conceptual framework depicting the relations among

patients and family factors and quality of life is presented.

Chapter 3 explains the methods used in conducting the research, including a description

of the study design, study population, data collection and data analysis protocol, where data

analysis is delineated into quantitative and qualitative analysis approaches. Chapter 4 presents

the study findings, reporting first on the results from quantitative analyses, followed by results

from the qualitative analysis. Chapter 5 provides an interpretation of the study findings,

integrating the results from the quantitative and the qualitative analyses. The study findings are

discussed in the context of the prior knowledge of the research topic, as gleaned from the

literature reviewed in Chapter 2. Chapter 6 concludes the dissertation, summarizing the key

study findings, identifying the strengths and limitations of the study, while providing the

implications for research and practice. Knowledge translation activities are also outlined, with

recommendations for future research to advance knowledge on the study topic.

6
Chapter 2: Literature Review

2.1 Cancer and the patient

2.1.1 Patient distress and quality of life

Cancer is described as a “multiple traumatic event” (Golant & Taylor-Ford, 2010, p. 38)

that is experienced over a lifetime; it is often characterized by numerous unpleasant experiences,

including: diagnosis, treatment, side effects, fear of recurrence, and fear of dying. Golant and

Taylor-Ford highlighted that distress of cancer could impact an individual’s cognitive,

behavioral, social, emotional, and spiritual functioning, thereby interfering with the person’s

perceived inability to cope with the illness. In health care literature, distress caused by acute and

chronic illness is identified to encompass both physical discomfort and mental anguish, even as

psychological distress is deemed the individualized patient response to illness in which the

healthcare professionals intervene (Ridner, 2004). Ridner further defined psychological distress

as the “unique discomforting, emotional state experienced by an individual in response to a

specific stressor” (Ridner, 2004, p. 539). The levels of psychological distress in patients have

been found to be significantly associated with age, gender, ethnicity, social economic status,

cancer stage, and illness symptoms (Ashing-Giwa & Lim, 2011; Mehnert & Koch, 2008;

Thomas, NandaMohan, Nair, & Pandey, 2011). Sinding and Wiernikowski note that the ill

person's construction of their cancer experience is influenced by their demographic

characteristics (such as age, social economic status), where cancer may be deemed more

disruptive for some patients than for others (Sinding & Wiernikowski, 2008). Kim and Given

(2008) posit that a person’s quality of life (QOL) is influenced by the availability of resources to

the individual – including sociodemographic, medical, psychosocial and physical health factors

7
(Kim & Given, 2008). The authors further explain that when a demand is appraised to be

exceeding the person’s resources, the demand is deemed a stressor, where the process of coping

with the stressor will impact the individual’s QOL.

In the absence of consensus in defining what constitutes quality of life, QOL is

conceptualized as a multidimensional construct that encapsulates different aspects or domains of

life, including physical, psychological, social and functional well-being (Cella & Tulsky, 1993).

Ferrell and colleagues further expand the domains of QOL to include the measures of an

individual’s emotional and spiritual well-being (Ferrell, Hassey Dow, & Grant, 1995). In the

physical domain, the impact of cancer is related to many factors, which include the patient’s age

and comorbidities, the specific diagnosis, location of the tumour, type of treatment and intensity

of treatment (Miller, 2010). Miller further clarifies that the factors impacting the psychological

and social domain (often referred to as psychosocial) include the cancer patient’s premorbid

emotional life, social support, and factors related to the cancer type and the side effects of

treatment. For the existential and spiritual dimension, the way in which cancer patients create

meaning and purpose of life, death and dying, while making sense of the challenges that they are

facing, will also influence their quality of life (Northouse, Kershaw, Mood, & Schafenacker,

2005). While QOL is used to denote outcomes as experienced by the patient, the variations in the

definition of QOL include subjective evaluations (such as satisfaction), perceived health status

(as in performance of daily activities), or both evaluation and health status (Ferrans, 2005). It

follows that the perspective of the care recipient, of which the individual preferences and values

are encapsulated, is fundamental in the measurement of patient QOL (Ferrans, Zerwic, Wilbur,

& Larson, 2005).

8
 The impact of cancer on each of the domains of patient QOL may also be interrelated,

such as when a physical impairment after cancer treatment may increase individual

psychological difficulties, and in turn impede health outcomes (Meyerowitz & Oh, 2009). While

some cancer patients recover well after their treatment, others may continue to have medical,

psychological, social and other consequences of living with the disease (Miller, 2010). In the

range of issues that patients and families encounter, the challenges may also include financial

concerns, availability of persons to provide care in the longer term, resuming the role as the care

provider of dependents, and living with physiological and or functional loss after treatment

(Golant & Taylor-Ford, 2010). It follows that it is paramount to recognize and address the

multidimensional effects of cancer on patients, and on the family members who assume the role

of upholding the ill person’s QOL through caregiving.

2.2 Cancer and the family

2.2.1 Role of the family caregiver in social support

Notwithstanding the changing pattern of the family unit, the family remains the central

organizing social structure in many Western and non-Western cultures, particularly with the

occurrence of critical illness (Moore & Butow, 2004). As a system that comprises interdependent

people who can influence each other, a serious illness, such as cancer, affects the larger family or

social network, not just the ill person (Broderick, 1993). While the nuclear family is regarded as

the basic social unit in North American definitions of family, members of the extended family

have also been included as key individuals of the Chinese family who provide care to their loved

ones diagnosed with cancer (Bell, Lee, Foran, Kwong, & Christopherson, 2010; J. Lee & Bell,

2011). In family caregiving literature, the family caregiver is identified as an unpaid family

member responsible for providing physical, informational, instrumental and emotional support to
9
aid the sick relative in the disease coping process (Bevan & Pecchioni, 2008). In this study, a

family caregiver is defined by the cancer patients as a “family support person who provides

physical, emotional and/or social care” after the cancer diagnosis. As congruent with the

patient’s interpretation, persons sharing family-like relationships with the patients may be

included as family caregivers in the study, where it would be important to consider relations

beyond kinship when examining the impact of cancer on the family.

Family caregiving encompasses a series of relationships, where reconfiguration and

renegotiation are continuously occurring (Dobbins, 2007). Dobbins further describes that family

caregiving is “woven into the rich matrix of activities, events, roles, and relationships that make

up lives” (Dobbins, 2007, p. 190). As the first line of support and caregiving, the family becomes

the “buffer zone” (Lewis, 1986, p. 269) for patients living with the illness, while providing the

context from which the patient attempts to derive personal meaning, purpose and self-worth.

Particularly, a family's capacity to provide support in relation to finance, functional, social,

emotional, and decision-making may serve as a base for stability in the uncertainty of cancer in

the family and, in turn, may influence patient coping and health outcomes (Kotkamp-Mothes,

Slawinsky, Hindermann, & Strauss, 2005).

Research on the role of the family among cancer populations has highlighted the critical

role of family caregivers in providing emotional, instrumental and informational support to

cancer patients (Bloom, 2000; Given, Given, & Kozachik, 2001). Bloom describes emotional

support as the perceived availability of thoughtful and caring individuals, with whom patients

can share their inner thoughts and feelings. Instrumental support or tangible support is defined as

specific assistance that ill persons considered helpful. In providing informational support, Bloom

explains that the knowledge relevant to the patient’s situation is shared. As the unpaid family

10
support person who aids in the patient's disease-process coping, the social support role of the

family caregiver is complex and often spans across all dimensions of caregiving (Honea et al.,

2008).

Defined as the “positive, affirmative and empathetic social interactions” (Golant &

Taylor-Ford, 2010, p. 40), social support has been identified as a critical determinant of

psychological well-being, health and coping behaviour, in the course of illness among cancer

patients (Kotkamp-Mothes et al., 2005). While the size of social network may be indicative of

the resources available to the patient in coping with the illness, Cheng and colleagues argue that

the individual’s satisfaction with and decision to use the available resources is key in influencing

various aspects of the patient’s quality of life (H. L. Cheng et al., 2013). Exploring social support

and its relationship with QOL in breast cancer survivors in China, the authors observe that social

support is situation-specific, where social support is perceived as helpful when it is congruent

with the needs of a situation. By the same token, the influence of social support on the patient’s

quality of life may also vary by the types of support received.

Where patients have identified receiving most benefit from the emotional support

rendered by family and friends, women who expressed their emotions about breast cancer in

receptive social contexts also reported improved physical health and reduced distress (Stanton et

al., 2000). On the other hand, unsupportive behaviours from family members, including

avoidance and non-disclosure of emotions, were found to be associated with increased distress

among patients with breast and prostate cancer (Cordova, Cunningham, Carlson, &

Andrykowski, 2001; Helgeson, Novak, Lepore, & Eton, 2004). The provision of instrumental

support from family and close friends was also reported to be useful to both male and female

cancer patients following surgery, particularly in relation to enhancing patient emotional well-

11
being (Boehmer, Luszczynska, & Schwarzer, 2007). While informational support offered by

health care providers is deemed beneficial, such information offered by family and friends may

be perceived as unsolicited advice, adding to the distress of the patient (Helgeson, 2003).

Although social support may be conceptualized as constituting different components, it is

important to note that these components may not operate in isolation from each other, and

instead, each may serve overlapping functions (Pierce, Sarason, Sarason, Joseph, & Henderson,

1996). Pierce and colleagues opine that it is conceivable that instrumental supportive behaviours

that serve to strengthen task-focused coping will lead the support recipient to conclude that he or

she is valued and loved, hence feeling emotionally supported by the provider of the practical

help. Further, the overlapping function of social support illustrates that supportive behaviour

occurs in the context of interpersonal relationships. This type of social structure strongly

increases appraisal of support by the patient.

2.2.2 Family caregiver distress

Among persons where family relationships are foundational in their social network, it

follows that the impact of cancer is not confined to the ill person but also members of the family

(Kim & Given, 2008; Northouse, 2005). Where cancer is deemed a family disease, it may be said

that the diagnosis of cancer impacts the entire family network in myriad ways (Pecchioni,

Thompson, & Anderson, 2006). The demands of caregiving may impact various aspects of the

family caregivers’ lives, including personal routine, family and social relationships, career,

financial, physical health and emotional wellbeing (Golant & Haskins, 2008; Hodgkinson,

Butow, Hunt, et al., 2007; Kurtz, Kurtz, Given, & Given, 2004; Loke, Liu, & Szeto, 2003).

While cancer patients bear the psychosocial stressors of aloneness, loss of control and loss of

hope, the family caregivers face parallel psychological distress through the course of caring for
12
the ill family member (Golant & Haskins, 2010). In two meta-analyses of studies conducted in

North America, Europe, Australia and Israel, family members, particularly female partners, have

been said to report more psychological distress than their ill family member (Hagedoorn,

Sanderman, Bolks, Tuinstra, & Coyne, 2008; Hodges et al., 2005). This finding concurred with

Mellon and colleagues’ study of a US population-based sample of mixed cancer patients and

their family caregivers, where the fear of recurrence was reported to be greater in the family

caregivers than in the patients, as the family copes with the uncertainty following cancer

treatment (Mellon, Kershaw, Northouse, & Freeman-Gibb, 2007). When family caregivers do

not have outlets to express their anxieties, such suppressed emotions may lead to feelings of

resentment towards the cancer patient whom they are caring for (Golant & Haskins, 2008).

The role of the family caregiver is significantly impacted by patient prognosis, stages of

illness and goals of care (Glajchen, 2004). The burden of caregiving on the family caregivers is

also influenced by other role demands (being employed, concurrently caring for other family

members) and the availability of social, financial and training resources to support their

caregiving role (van Ryn et al., 2011). While it may be said that family caregivers’ experience of

powerful emotions at the time of diagnosis and treatment may equal or exceed those of the

patient, such emotionality may heighten as the illness advances and treatment becomes palliative

in intent (Edwards & Clarke, 2004; Hodgkinson, Butow, Fuchs, et al., 2007). From Stenberg and

colleagues’ review of literature on the effects of caring for a cancer patient in the family, the

types of problems that family caregivers have reported include: physical health, social,

information needs, emotional and burdens related to caregiving responsibilities (Stenberg,

Ruland, & Miaskowski, 2010). While variations in problems and responsibilities are dependent

on the severity of the patient’s illness, the authors further suggest that family caregiver problems

13
may be primarily psychological in the early stage of the patient’s treatment, shifting to be more

psychosocial or physical in the later stages.

Studies on family caregiving have suggested that several factors are associated with

caregiver distress, including gender, age, patient-caregiver relationship and patient symptoms

(Dumont et al., 2006; Northouse, Katapodi, Schafenacker, & Weiss, 2012). In a review of

literature examining the quality of life of family caregivers of cancer patients across ill

trajectory, Kim and Given reported that the demographics and psychosocial characteristics found

to be associated with higher caregiver distress include: being younger, being a woman, being the

patient’s spouse, and having lower socioeconomic status (Kim & Given, 2008). From the

findings of a study conducted in the US on the psychological adjustment of cancer caregivers

with multiple roles, family caregivers who have to manage their employment and care for their

children, while attending to the needs of their ill family member, were reported to be particularly

likely to experience psychological distress (Kim, Baker, Spillers, & Wellisch, 2006). In another

review of literature about the needs of family members of older adults with cancer, Given and

Sherwood reported that while younger family caregivers were found to have challenges in

affective domain when seeking to balance caregiving with their multiple societal roles, the

difficulties older caregivers encountered included difficulty with tasks and physical care

demands in providing care (Given & Sherwood, 2006). Notwithstanding that younger caregivers

have predominantly reported more negative impact of caregiving than their older counterparts,

Given and Sherwood highlight that older caregivers often have comorbid conditions, in addition

to living on fixed incomes and facing a shrinking social support network. Such factors may put

them at greater risk of distress, all of which may lead to poorer physical and mental health for the

family caregivers.

14
 Notably, family caregiving literature has highlighted female caregivers and partners to be

the most vulnerable group of caregivers, with higher reported levels of distress in comparison to

other informal caregiver groups. For female family caregivers, the risk of competing

responsibilities may be greater than their male counterparts, resulting in feelings of entrapment in

informal caregiving (Gaugler et al., 2005). While it may be said that female family caregivers are

more attentive to their emotions and may be more likely to report negative effects of caregiving,

spousal caregivers may also experience higher distress (Given et al., 2001; Kurtz et al., 2004). As

primary attachment figures and care providers, spousal caregivers are required to maintain their

role longer in providing the most extensive and comprehensive care to their ill partner (Nijboer

et al., 2000). Even as age and gender may influence the family caregiving process, the dynamics

in the relationship between caregiver and ill family member is also a significant consideration in

caregivers’ perception of their caregiving role (Kim, Baker, et al., 2006). Particularly when the

family caregiver and the patient are in less mutually satisfying relationships, such tension can

create a very difficult caregiving situation, further heightening the caregiver psychological

distress (Schumacher et al., 2008).

2.2.3 Patient and family caregiver adaptation to cancer

As a social system, the distress in one member of the family has a significant impact on

other members, affecting patients’ and the family members’ adaptation to changes brought on by

cancer, and subsequently their QOL (Northouse, Mellon, Harden, & Schafenacker, 2009). The

psychological distress of cancer patients was found to be significantly correlated with that of

their family caregivers, who included spouses and children as primary care providers (Hodges et

al., 2005; Lissandrello et al., 2006). Family caregiving by its nature is fundamentally relational

and often reciprocal (Feld, Dunkle, Schroepfer, & Shen, 2006; Lingler, Sherwood, Crighton,
15
Song, & Happ, 2008; Sanders & Kittay, 2005). As Chan and colleagues note in couple dyads,

where the patient-caregiver relationship is regarded to be “reciprocal, and each party affect[ing]

the other emotionally and behaviourally” (Chan, Molassiotis, Yam, Chan, & Lam, 2001, p. 389),

patients are particularly sensitive to the worry and anxiety of their partners when they are

diagnosed with cancer. Even as positive influence of family support extends to a patient's level

of adjustment to the disease and quality of life, the family caregiver’s difficulties in adapting to

cancer in the family could also adversely affect role adjustment of the patient, where adjustment

problems may persist over time (Northouse, Mood, Templin, Mellon, & George, 2000).

Dealing with critical illness can result in significant psychological distress in families,

interfering with normal developmental processes. As evident in research, families already

experiencing signals of psychological distress, such as depression or anxiety, prior to cancer

diagnosis will continue to manifest symptoms of psychological vulnerability throughout the

illness trajectory (Northouse et al., 2009). As the family watches the patient's health deteriorate,

helping the patient cope with emotional distress is identified as one of family caregivers highest

unmet needs following the cancer diagnosis (Kim, Kashy, Spillers, & Evans, 2010). The worry

of family members was also reported to persist after completion of the patient’s cancer treatment

(Northouse, 2005). The uncertainty about the future and fear of cancer recurrence is the most

commonly cited emotional distress for patients and family members, even as family caregivers

have reported feeling more fearful than the patients that the cancer would recur (Mellon et al.,

2007). Where family members experience higher uncertainty and perceive less support from

others, the emotional toll puts them at higher risk of maladaptation to cancer in the family (Eton,

Lepore, & Helgeson, 2005).

16
 In the midst of high tension, the ill person and family members may adhere to a

“conspiracy of silence" (Kotkamp-Mothes et al., 2005, p. 222), seeking to repress conflict and

negative affect in order to protect each other in the family. Notwithstanding that open

communication facilitates role changes and reduces role-related distress in the family system,

Kotkamp-Mothes and colleagues note the challenge in evaluating communicative behaviour

related to the cancer of a family member. Notably, the success in adapting to a serious illness in

the family hinges on the members’ ability to change roles and rules in response to the variety of

supportive needs in a constructive way. With a cancer diagnosis, the avoidance of

communication about the disease may also reflect autonomy of members to detach themselves

from the illness and threatening processes, although the conspiracy of silence may permanently

inhibit open communication. While non-disclosure of emotions may be viewed by health

professionals as maladaptive, Thorne highlights that such communication strategies may serve to

maintain normalcy and dignity for the group, when they are consistent with the family

philosophy and are understood by all in the family (Thorne, 1985).

2.3 Positives of cancer

2.3.1 The patient experience

While the psychological distress of a cancer diagnosis and the treatment that follows can

be intense, cancer patients are noted to manifest resilience in coping with the illness, and even

find benefit from their experience with cancer (Miller, 2010). These benefits are classified

according to three domains of life, namely, enhanced social resources, enhanced personal

resources, and improved coping skills (Jim & Jacobsen, 2010). Jim and Jacobsen observe that

those who report greater benefits are younger, members of ethnic minority groups, having

greater disease severity and longer time since diagnosis. Other factors associated with greater
17
perceived benefits among cancer survivors include coping strategies of problem solving, positive

reinterpretation and being involved in enjoyable activities. However, association between

perceived benefits and gender, socioeconomic status, education and type of treatment is unclear.

Notwithstanding the challenges encountered, survivors may also experience a new emotional

depth that characterizes their life after a cancer diagnosis (Miller, 2010). Indeed, the increased

self-awareness and spirituality of cancer patients have often been described as the positives of

cancer and the growth patients have experienced through their illness. As Bower points out, the

recognition of the impermanence of life can prompt one to re-evaluate one’s values and goals,

bringing about a new awareness of the self and personal growth (Bower et al., 2005).

While the experience of cancer may serve as a teachable moment for some patients, this

may not be the experience of others who have undergone similar illness. In the diversity of

illness experience among survivors, there may be dual outcomes of both positive and negative

transformations in individual perspective and identity in the aftermath of cancer (Kahana,

Kahana, Deimling, Sterns, & VanGunten, 2011). As survivors are ultimately the interpreters of

their cancer experience, Jim and Jacobsen further highlight that it would be prudent that

healthcare providers maintain an open stance, neither rejecting nor insisting benefit-finding in

cancer survivorship (Jim & Jacobsen, 2010). Although it is well intended to empower cancer

patients to cope with the uncertainty of a life-threatening disease, it is important that individuals

who do not experience growth are not pathologised, an outcome which only serves to further

isolate patients in their illness experience.

2.3.2 The family caregiver experience

Despite the challenges associated with giving care, cancer may also bring about

opportunities for the families. While caregiving responsibilities can compete for time and energy
18
in the daily living of a family caregiver, caregiving interaction may be deemed a relational

commitment where care providers show their love and support for the patient (Mok, Chan, Chan,

& Yeung, 2003; Wong & Chan, 2007). Although the demands of caregiving may lead to

psychological distress and negative physical health outcomes for the family caregivers, positive

emotions arising from caregiving are also reported. The diagnosis of a life-threatening illness, as

in cancer, is said to be a transformative experience, prompting family members towards better

appreciation and perspective on life (Mellon, 2002; Rolland, 2005). Through such experiences,

family members are led to a reorganization of life priorities, providing families with the

opportunity to develop more immediate and caring relationships.

In addition to the deepening of relationship with the ill family member, caregivers have

identified positive feelings of satisfaction and finding meaning in their caregiving experience,

which serves to buffer the negative emotional and physical consequences of caring for an ill

loved one (C. Cohen, Colantonio, & Vernich, 2002; Given, Sherwood, & Given, 2009). Further,

the family caregivers’ ability to accept new possibilities of emotional and spiritual growth and

appreciation for new relationships also helps them to thrive when facing the challenges of cancer

in the family (Kim, Schulz, & Carver, 2007). Essentially, the negative and positive effects of

caregiving may exist concurrently; the positive impact may serve to buffer the negative effects of

caring for an ill family member (Kurtz et al., 2004; Pinquart & Sorensen, 2004).

2.4 Cancer and a culturally diverse population

2.4.1 Health beliefs and help-seeking in cultural context

While the issues related to cancer may be universal, ramifications of problems that

patients and their families face, are magnified or mitigated by their cultural and social

environment (Ho, Saltel, Machavoine, Rapoport-Hubschman, & Spiegel, 2004). Particularly,

19
cultural factors related to individual perception of cancer, family role, and hierarchical role

expectations of health care professionals are important considerations that influence the help-

seeking behaviour of patients and family caregivers (Ashing-Giwa et al., 2004). Significant

cultural differences regarding health beliefs typically emerge at the occurrence of a major health

crisis, where such diversity would translate into different behavioural patterns (Rolland, 2005).

Rolland notes that the areas in which variation in cultural norms may be observed include:

beliefs about treatment and healing; the role of the patient as the ill person; communication about

the disease; individuals to be involved in the caregiving system; persons to assume the primary

caregiver role and gender norms; and the rituals viewed as normative across the illness

trajectory. In instances where healthcare providers disclose to patients the truth about their

cancer, without prior understanding of the underlying cultural implications, there may be the

potential risk of demoralising patients and compromising their confidence in the treatment (Liu,

Mok, & Wong, 2005).

Feelings of shame and guilt in patients may also arise among cultures that adhere to the

belief that cancer is caused by having neglected or subjected one’s body to harmful habits,

although such perception of the disease and focus on lifestyle may also be observed in North

American cancer population (Ho et al., 2004). In some communities, such as among the Chinese,

cancer may even be perceived as retribution of having committed injustice to others, resulting in

the misfortune of a serious illness like cancer (Lui, Ip, & Chui, 2009). A cultural belief that

cancer is "contagious" could also lead to social isolation (J. Lee & Bell, 2011). The impact of

social stigma is particularly distressing when such beliefs of cancer are upheld in one’s

community, further isolating the patient and reducing the social support network (H. L. Cheng et

al., 2013).

20
 Even as cultural beliefs influence a person’s emotions and concerns regarding cancer,

family beliefs about normality also play a significant role in adaptation to illness. In presenting

his conceptual framework- the Family Systems Illness model- developed to serve as a

psychosocial map for families living with cancer over time, Rolland notes that where family

values allowed having a problem, such permission enabled family members to seek help outside

of the family and maintain a positive identity in coping with cancer (Rolland, 2005). From a

study investigating the unmet needs and service barriers of Asian-American family caregivers, it

was found that caregivers refused to accept help from outside the family, for reasons of pride and

not wanting outsiders to be involved in family matters (Li, 2004). As Chan and colleagues

observe, coping with cancer is primarily “a private and family matter” (Chan, Hon, Chien, &

Lopez, 2004, p. 234), and the trusting relationships within the "in-group" are deemed enduring to

fulfill the individual’s needs. While strong family ties and larger social support networks of

extended family are beneficial to the family’s adaptation to cancer, such characteristics of the

family may also prevent the caregivers from seeking help from formal care providers. In a meta-

analysis of 116 empirical studies, Asian-Americans were found to provide more caregiving

hours, receive lower levels of formal support services, have fewer financial resources and

experience higher levels of depression than the other subgroups (Pinquart & Sorensen, 2005).

Coupled with the cultural perspective of cancer as a family affair, the reluctance to share familial

problems with outsiders may further exacerbate the family’s perceived burden of caregiving.

The expectations regarding patient and healthcare provider roles may also vary across

cultures, where diversions from the Western philosophy of care can create tensions between the

care recipients and care providers (Moore & Butow, 2004). In cultures where medical

professionals are regarded to be the experts, any ambiguity in the presentation of diagnosis or

21
treatment recommendations may compromise patient and family confidence in care providers

(Huang, Butow, Meiser, & Goldstein, 1999). In the North American care context, practices that

uphold patient autonomy and shared decision-making may be perceived as incompetence by

patients and families in cultural groups, where healthcare professionals are deemed the experts. It

follows that care recipients who come from cultures where physicians are esteemed may be in

tension with a care system that seeks to engage patients and families in the care process.

Understandably, for patients whose health beliefs, value systems and linguistic background are

distinct from the larger Canadian society, such differences may put them at odds with the

Canadian health system (R. Lee, Rodin, Devins, & Weiss, 2001).

2.4.2 Family caregiving in cultural context

Notwithstanding the central role of the family in the management of the disease across

cancer populations, the level of patient and family caregiver autonomy in decision making may

vary according to the cultural context of the care recipients (Huang et al., 1999). In a survey of

Chinese cancer patients and family caregivers in Australia, Huang and colleagues found that the

majority of respondents concurred that the family was to assume the advisory role regarding the

amount of information a physician should disclose to the patient, and the manner in which the

information was conveyed. At the same time, the participants in the study also preferred that the

family be fully informed of issues relating to the patient’s illness, in order for members in the

family to best support the patient. With familial support as a coping mechanism, family members

rely on social ties created and maintained when providing mutual economic and emotional

support (Moore & Butow, 2004). Where the family, rather than the individual, is the unit of care,

familial needs for information are central to family caregiving. In contexts of care where patient

permission is still required before illness-related information may be disclosed to the family, it
22
may mean relatives will be denied information about diagnosis and prognosis, as per the

patient’s request. Consequently, distress in the family may be heightened, as the difference in

values of family-centred cultures and the Western individual-centred care context is accentuated.

When recognizing the family as the primary source of social support for the cancer

patient, it may be said that patterns of caregiving behaviour and family roles in the course of

cancer care are culturally-conditioned (Gotay, 2000; Kagawa-Singer & Nguyen, 2000). At the

same time, cultural variation in family structure exists, where the most critical family ties are

spousal, parental and siblings. In cultural groups where the parent-child bond is most dominant,

disease and cancer types that affect fertility could have profound negative implications on

patients and their family members (Gotay, 2004). Further, in cultural contexts where there is an

emphasis on maintaining stability and harmony in the family through members’ adherence to

predefined roles, it is conceivable that a serious illness that disrupts and redefines roles in the

family will create tension among its members (M. D. Lee, 2007; Loke et al., 2003). This could

be particularly distressing for the cancer patient and the family caregiver, as each adjust to their

new role in living with the illness.

2.4.3 Caregiving in Chinese families

While there are important regional differences in what is generally termed as Chinese

culture, a common element is the emphasis placed upon the family as the “fundamental unit of

society” (D. Y. H. Wu & Tseng, 1985, p. 7), where caring for the family structure and

relationships is of paramount importance. With the emphasis on family solidarity and loyalty in

the Chinese family system, concern and affection for family members often takes the form of

caring for others’ physical needs, rather than the verbal articulation of emotion (Hsu, 1985).

Cheng and colleagues note that traditional expectations in Chinese cultural contexts, which place
23
the needs of family members above one’s own, may result in family caregivers being fully

occupied in just meeting the patients’ needs (Y. H. Cheng, Chi, Boey, & Ko, 1996). Family

members also express caring through efforts that protect each other from physical as well as

mental pain. Conceivably, the common practice of “protective truthfulness” (Liu et al., 2005, p.

268) would add to the demands of caregiving, as family caregivers bear the burden of concealing

the cancer prognosis from the patient.

Aligned with the concept of cohesion in the Chinese family, Hsu further clarifies that

“collective uniformity” (Hsu, 1985, p. 99) of ideas and behavior is often demanded of its

members, where the individual attributes are viewed as representing the collective qualities of

the family. In the same vein, while a family member’s achievement is deemed a family’s honour,

the individual’s adversity will constitute the family’s misfortune. This is particularly true of a

cancer diagnosis, which is widely stigmatized in the Chinese community as a death penalty. Ho

and colleagues note that in China, conversations about death may be interpreted as inviting it or

condemning oneself to die (Ho et al., 2004). Where death and dying is a taboo topic, family

members may be reluctant to discuss the disease, especially in the presence of the patient.

In facing a life-threatening disease, such as cancer, problems are to be anticipated and

professional help beyond the family is essential. In families where help-seeking is associated

with being weak, such values may compromise the family’s resilience in coping with the illness

(Li, 2004; Moore & Butow, 2004). Where the ability to tolerate momentary distress is deemed a

virtue, seeking help outside the family may be regarded as shameful. Additionally in the Chinese

community, the feelings of shame and guilt associated with the belief of retribution (where

current sufferings are deemed to be the consequence of past actions) may prohibit patients and

family members from disclosing the illness to others (Lui et al., 2009). Ho and colleagues

24
observe that the constraint on disclosing emotion or thoughts related to cancer in the Chinese

population is largely driven by the desire to avoid disrupting social ties among the network of

family and friends (Ho et al., 2004). Understandably, such communication gaps could complicate

discussions about diagnosis and informed consent (Ngo-Metzger et al., 2003). For the family

caregivers, it is conceivable that the constraints in expressing emotionality, coupled with the

reluctance to disclose distress in order to preserve the collective presentation of the family to the

outside world, may add to their psychological distress in the course of caregiving (J. Lee & Bell,

2011).

While having an understanding of cultural differences would be beneficial to healthcare

providers, an awareness of diversity that exists within the cultural context is of critical

importance (Moore & Butow, 2004). Even as providing culturally appropriate care requires

having information of the beliefs and practices within particular cultures and ethnic groups,

exploring the preferences and needs of the individual remains central in care provision, and

cannot be displaced. As healthcare providers remain cognizant of the cultural differences

between themselves and the care recipients, such awareness will help forge a therapeutic alliance

with patients and family caregivers in the course of care provision (Rolland, 2005). If cultural

issues are disregarded, Rolland cautions that patients and families may wall themselves off from

healthcare providers and community resources, resulting in noncompliance and treatment failure.

At present, there is a dearth of literature on the experiences of cancer among populations

from culturally and linguistically diverse backgrounds (Given, Sherwood, & Given, 2011;

Northouse et al., 2009; Stenberg et al., 2010). Particularly, Given and colleagues comment that

“there is a noticeable absence in inclusion of diverse populations in any of the caregiver studies

of the survivorship phase” (Given et al., 2011, p. 2019). With over 16% of the Canadian

25
population identified as ethnic minorities, and 15% of metro Vancouver population in BC

indicating Chinese as their mother tongue, the need for culturally appropriate care for Chinese

cancer patients and their families is evident. It follows that more diversity in both patient and

family caregiver samples is critical, in order to better understand the role of racial and ethnic

characteristics in the family’s adjustment to cancer and in the provision of appropriate care.

2.5 Conceptual framework of the study

In studies of family caregiving of cancer patients, the frameworks most often described

relate to stress (stimulus or response) and coping (adaptation), built on the works of Lazarus and

Folkman. According to Lazarus and Folkman, emotional outcome for people is generated from

their appraisal (evaluation or judgement) of the event, their coping processes, and the event

outcome (Lazarus & Folkman, 1984). Based on Lazarus and Folkman’s framework, Northouse

and colleagues derived the stress-appraisal model that explained the effects of person, social and

illness-related factors on the quality of life of the patient and family members (Northouse et al.,

2002). In Northouse and colleagues’ model, the individual’s appraisal of illness directly affects

the ill person’s QOL and also mediates the effects of some of the antecedents on QOL. Within

these approaches of giving care to a family member diagnosed with cancer, the caregiver

responses are determined by a balance between care demands and availability to meet demands,

where coping skills are central to adapting to the stress (Given et al., 2009; Sherwood et al.,

2007). More importantly, the psychological distress experienced is not determined solely by the

demands of the situation or by the resources of the person, but by the individual’s perception of

the relation between the demands and resources in the situation.

Adapting Northouse and colleagues’ theoretical model, the conceptual framework of this

study is presented in Figure 1. In my dissertation, psychological distress (from hereon referred as

26
distress) is the central concept of my study framework. Therefore, I have focused on the

component of emotional outcome (i.e. distress) of Northouse and colleagues’ model, rather than

on the appraisal process. From the framework, four groups of factors are identified: patient,

illness-related, social/family, and family caregiver. These factors affect patient QOL directly,

and also indirectly through patient and family caregiver distress levels. The level of distress of

the patient and the family caregivers may be interrelated, reflecting the reciprocal reaction of the

ill person and the family caregiver to cancer as an “emotional system” (Northouse et al., 2012, p.

237). Patient and family caregiver distress levels are purported to be directly related to patient

QOL and also indirectly through patient, illness-related, social/family, family caregiver factors,

as mediated by the distress variables. In my study, variables of patient factors included age, sex,

education, duration of migration and English fluency; variables of illness-related factors included

cancer site, cancer stage and treatment type; variables of social/family factors included duration

of caregiving and patient-family caregiver relationship; variables of family caregiver factors

included age, sex and education of the family caregivers.

Figure 1: Conceptual framework of distress and quality of life among cancer patients and family
caregivers

Patient factors
age, sex, education, migration
duration, English fluency Patient distress

Illness-related factors
cancer site/stage, treatment type
Patient QOL
Social/family factors
caregiving duration, patient-
family caregiver relationship Family caregiver distress

Family caregiver factors

age, sex, education

27
Summary

The implications of a cancer diagnosis are multifaceted, impacting not only the patient

but also the family caregivers. To date, few studies have explored the psychological distress of

family caregivers and its relation with patient quality of life (QOL), particularly among culturally

diverse cancer populations. This study seeks to understand the associations between patient

distress, family caregiver distress and patient QOL in a Chinese-speaking population in British

Columbia, Canada. For this study, using the conceptual framework just illustrated, the direct

effects and mediation effects of patient distress and family caregiver distress on patient QOL

were first investigated. The Chinese-speaking patients and family caregivers were also

interviewed, to glean insights into their experience of cancer in light of their cultural values and

beliefs relating to illness and family role. The methods used in conducting the study are

presented in the following chapter.

28
Chapter 3: Methods

3.1 Study design

The study entailed a mixed methods design consisting of analyses of quantitative data from

cross-sectional surveys and qualitative data from semi-structured interviews, in order to obtain a better

understanding of the research issues than could be gleaned from either approach alone. As a

methodology and a method, Creswell and Plano Clark note that mixed methods research consists of core

characteristics that combine methods, philosophies and research design orientations (Creswell & Plano

Clark, 2011). The mixed methods approach was said to be an outgrowth of the “triangulation of

methods” (Dunning, Allison, Abonyi, & Crooks, 2008, p. 147) movement, where the main goal of

triangulation was to confirm findings of a study by using qualitative and quantitative methods. In a

mixed methods approach, the goal extends beyond triangulation for the purpose of confirming results.

Rather, it encompasses the intent of enhancing comprehension, of gaining better understanding of

results, discovering new perspectives, and/or developing a new measurement tool through the use of

multiple methods (Tashakkori & Teddlie, 1998).

Dunning and colleagues note the benefits and limitations of mixed methods research. The use of

mixed methods serves to increase confidence in the data and the findings, while also providing the

opportunity to revisit existing theories and enhance understanding of the phenomenon under study

(Dunning et al., 2008). At the same time, using a mixed methods approach often requires increased

skills, time and cost in conducting the studies. Further, Dunning and colleagues raise the question of

whether it is appropriate to examine quantitative and qualitative data for confirmation and

comprehension, in light of the distinct theoretical underpinnings specific to each method of inquiry.

In my study, a mixed methods design was used to provide different perspectives on the research

questions concerning the role of family caregivers, in relation to patient adjustment to cancer within the

29
target group of a Chinese-speaking population. Specifically, quantitative regression analysis of survey

data was conducted to examine how patient and family caregiver distress levels relate to patient quality

of life among the Chinese-speaking cancer population living in Greater Vancouver, with the use of an

Anglophone-Canadian group of patients and family caregivers to provide a backdrop for interpretation

of the results for the target group. To shed light on the challenges of living with a cancer diagnosis in

Chinese-speaking families, qualitative thematic analysis of interview data was used to draw insights

about the impact of cancer on the psychological well-being of patients and their family caregivers, and

the influence family caregivers have on the quality of life of the patients.

Aligned with the pragmatist paradigm that focuses on addressing issues by combining deductive

and inductive thinking, I adopted mixed methods that encourage the “use of multiple worldviews”

(Creswell & Plano Clark, 2011, p. 13) to answer research questions, rather than adhering to a single

paradigm associated with either quantitative or qualitative research. Based on the quantitative results, I

solicit general explanations regarding the associations among patient and family caregiver variables.

Through qualitative analysis, we glean a better understanding of the processes by which cancer impacts

the family. Essentially, the quantitative component of the study gives an account of the structures that

are representative of the cancer phenomena observed in the family; the qualitative research provides us

with a sense of the patient and the family caregiver perspectives of the disease, experienced individually

and collectively in the family.

To operationalise the mixed methods approach, I used a convergent parallel design where

quantitative and qualitative data were collected concurrently and analyzed during the same phase of the

research process research; following this, the two sets of results were merged into an overall

interpretation (Creswell & Plano Clark, 2011). The purpose was to “obtain different but complementary

data” (Morse, 1991, p. 122) regarding the impact of cancer on the family, in order to best understand the

30
research issue. In this mixed methods study, both quantitative and qualitative methods were given equal

weighting, as similarities and differences of the impact of cancer on patients and their family caregivers

emerging from each approach were highlighted. The quantitative and qualitative results were directly

compared and contrasted in relation to the research issues of distress and quality of life at the

interpretation phase of the study, where both sets of results were synthesized to develop a more

complete understanding of the phenomena under study. Such a research strategy provides a more

complete and contextual portrayal of the impact of cancer on the patients and on their families, as

informed by the integration of data from Chinese-speaking cancer patients and family caregivers, and an

Anglophone comparison group, in British Columbia.

3.2 Study participants

I undertook primary data collection strategies, recruiting survey participants living in Greater

Vancouver. Participants were primarily recruited through site display posters, distributed flyers and

announcements at multiple recruitment sites. The sites included British Columbia Cancer Agency

(BCCA), Canadian Cancer Society, local hospitals, support group networks, local broadcast media,

community centres and libraries. I made presentations to care providers at their clinical rounds and team

meetings; individual meetings were also initiated to facilitate referrals of potential participants. I further

introduced the study to patients and families at the Chinese cancer support group facilitated at BCCA,

which provided me with opportunities to make direct contact with potential participants.

Recruitment for Chinese-speaking and Anglophone cancer patients and family caregivers was

conducted over a period of 1.5 years, between August 2012 and January 2014. The Chinese-speaking

patient population in the study included persons who met the following criteria: 1) were 19 years or

older; 2) identified Cantonese or Mandarin as their first language; 3) resided in BC; 4) were diagnosed

with Stage I to III cancer; 5) were between 6 months to 2 years post diagnosis; 6) had identified at least

31
one family caregiver. Family caregivers in this study were identified by the patients as the family

support persons who were primarily involved in the patients’ day-to-day care, in order to meet the

physical, emotional and/or social needs of the patients. These included adults, 19 years or older, residing

in BC, who shared family-like relationships with the patients.

The comparison group consisted of Anglophone patients and family caregivers, who were non-

Chinese native English-speakers to represent the broader Canadian society. With the exception of the

language fluency inclusion criteria, the same eligibility conditions applied to the comparison group. For

both groups, patients with metastatic cancer were excluded from the study, given that individuals with

advanced cancer would likely be facing issues distinct from those on which the study is centred.

Similarly, cancer patients diagnosed less than 6 months ago were excluded from the study population, in

consideration of patient and family readiness to participate in studies during the crisis phase of a cancer

diagnosis. Individuals having been diagnosed for more than two years were also excluded, for reasons of

meaningful comparison of survivorship issues that patients would encounter, and the caregiving

intensity family caregivers would likely face.

A subset of the Chinese-speaking survey participants also participated in semi-structured

interviews. Interaction patterns within the family varied according to sex, age, cancer site and patient-

family caregiver relationship. Accordingly, to provide varied interview data, interviewees were

purposely sampled to include: female and male patients and family caregivers, with ages ranging from

27 to 69; patients of diverse cancer sites; family caregivers who assumed the role of spouses, children,

or relatives/in-laws.

3.3 Study procedure

A total of 99 patients and family caregivers provided informed consent to participate in the

surveys; 95 were enrolled in the study. One Chinese-speaking and another Anglophone dyad withdrew

32
from the study for reasons of relocation and sickness. Individuals who had provided informed consent to

participate in the study (55 patients and 40 family caregivers) were scheduled for quantitative

questionnaires-based interviews administered in person, over the phone or by mailing, as per the

participants’ preference for data collection modality. I predominantly used telephone or in-person

meetings for data collection, to ensure completeness and clarity of data collected, taking into

consideration time efficiency and participant accessibility. The phone surveys lasted approximately

thirty minutes. In-person survey meetings were conducted with two patients, and written surveys were

used for nine patients and family caregivers. To increase participation rate, I used a mixed mode of

collecting survey data, where the influence of different methods of data collection in surveys has been

reported to be minimal (de Leeuw, 2005).

Participation from both patients and their respective family caregivers was sought. The study

sample constituted 38 dyads of patients and their family caregivers; however, participation from both

individuals was not always possible, and non-dyadic data consisted of 17 patient participants and 2

family caregiver participants. Members of the dyads were interviewed separately so that the patient and

his/her identified family caregivers could provide their perspectives independently of each other. During

administration of the surveys, demographic data were first collected from all participants. Patient

participants proceeded to report on their distress level and quality of life; family caregivers were only

asked to report on their distress level.

After participants completed the questionnaires, consent was sought from Chinese-speaking

survey participants identified as potential participants for the semi-structured interview, to provide

additional in-depth responses on their experiences with cancer. The semi-structured interviews were

scheduled within six months after the corresponding survey interviews. Sixteen Chinese-speaking

survey participants, ten patients and six family caregivers, participated in a second interview. Of the ten

33
patients who participated in the interview, five of the patient’s family caregivers were also interviewed,

providing five dyads for paired data analysis. The remaining five patients and one family caregiver

interviewees were not related.

The questionnaires were used and the semi-structured interviews were conducted during the

same data collection phase of the study. The duration of the interviews was between 1 and 2.5 hours.

Written notes were taken during the semi-structured phone interviews; 11 interviews were audio

recorded, where participants consented to the request for audio recording. I conducted all the interviews

over telephone, as per the expressed preferences of participants. The interviews were also conducted in

the language participants preferred: Cantonese, Mandarin, and English. As a native Chinese-speaker

from Singapore who has received education in Canada and lived in North America for over 15 years, I

am fluent in all three languages.

3.4 Quantitative methods

Multiple linear regression was used to investigate the direct effects on patient quality of life from

factors within these categories: patient, illness-related, social/family, and family caregiver. Additionally,

mediation analysis was conducted to examine the indirect effects of patient and family caregivers

distress levels on patient QOL. Data on the independent and dependent variables were collected using

self-report questionnaires. Background information about the patients and family caregivers was

collected via interview prior to administering the questionnaires, and used to generate covariates.

Derived variables were constructed to measure distress and QOL, and dummy variables were created to

represent the categorical covariates. Multiple imputation was used to address missing data in the study

sample.

34
3.4.1 Objectives and hypotheses

There were two primary goals of the quantitative analysis: i) To examine the direct effects of

factors relating to patient, illness-related, social/family and family caregiver on patient QOL, and ii) To

investigate the mediation effects of patient and family caregiver distress levels on patient QOL. Based

on the study’s conceptual framework, patient QOL is asserted to be influenced by factors related to the

patient and family caregiver background (age, sex, education, English fluency, migration history), the

illness (cancer site, cancer stage, treatment) and the nature of caregiving (caregiving duration and type

of patient-family caregiver dyadic relationship). While these factors may directly impact patient QOL,

the factors could also influence patient QOL indirectly through the patient and family caregiver

appraisals of their respective distress levels, as demonstrated in the stress appraisal model.

Congruent with the notion that cancer is a family disease, the role of the family caregiver in

patient adjustment to cancer may be studied in the context of the impact of the family caregiver distress

on patient QOL. It follows that it is important to assess the association between patient distress and

patient QOL, and that of family caregiver distress and patient QOL, when examining the factors that are

predicted to have direct impact on the quality of life of the patients. While the association between

patient QOL and distress may be bi-directional, patient and family caregiver distress are both assumed to

precede patient QOL in the study.

The main hypotheses tested in the study are:

1. Patient factors (age, sex, education, migration duration, English fluency), illness-related

factors (cancer site, cancer stage, treatment), social/family factors (caregiving duration,

patient-family caregiver relationship), and family caregiver factors (age, sex, education,

migration duration, English fluency) are directly related to patient QOL.

35
 2. Patient factors (age, sex, education, migration duration, English fluency), illness-related

factors (cancer site, cancer stage, treatment), social/family factors (caregiving duration,

patient-family caregiver relationship), and family caregiver factors (age, sex, education,

migration duration, English fluency) are also directly related to patient distress and

family caregiver distress.

3. Patient distress and family caregiver distress are directly related to patient QOL and thus,

mediate the associations between patient QOL and the factors of patient, illness-related,

social/family and family caregiver.

The direct effects of factors of patient, illness-related, social/family and family caregiver on patient QOL

were examined through the first hypothesis. Hypotheses 2 and 3 investigated the mediation effects of

patient and family caregiver distress on patient QOL.

3.4.2 Measurement instrument

Data from three sets of variables were collected for this study that used a conceptual framework to

examine the impact of patient and family caregiver distress on patient quality of life. The first set of data

relates to the covariates, and consists of background information about the patients and family

caregivers. The variables are: age, sex, education level (high school, post-secondary, university,

advanced degree), migration duration (years of living in Canada), self-assessed level of English fluency

(beginner, intermediate, advanced), cancer site, cancer stage, types of treatment received, caregiving

duration (months of caregiving to the patient), and types of patient-family caregiver relationship. The

self-reported data were obtained from the patients and family caregivers via interview prior to

completion of the questionnaire (Appendix A). The data were subsequently classified according to the

categories shown in the study variable description table (Table 1).

36
Table 1: Variables description

Variable names / Measurement type Variables

Dependent / Continuous
1) QOLTotal Total scores of FACT-G subscales
- PWB Physical well-being subscale score
- SWB Social/Family well-being subscale score
- EWB Emotional well-being subscale
- FWB Functional well-being subscale

Independent / Continuous
1) P_Distress Patient distress total score
2) C_Distress Family caregiver distress total score

Covariates
I) Continuous
1) P_Age Patient age
2) C_Age Family caregiver age
3) P_Canada Years patient lived in Canada
4) C_Canada Years family caregiver lived in Canada
5) Caregiving Months of caregiving
II) Categorical
6) Patient sex
Referent Female patient
P_Male Male patient
7) Family caregiver sex
Referent Female family caregiver
C_Male Male family caregiver
8) Patient education
i. Referent Patient with post-secondary education
ii. PEd1 Patient with high school education
iii. PEd2 Patient with university or advanced degree
9) Caregiver education
i. Referent Family caregiver with post-secondary education
ii. CEd1 Family caregiver with high school education
iii. CEd2 Family caregiver with university or advanced degree
10) Patient English fluency
i. Referent Patient with beginner or intermediate English
ii. PEng Patient with advanced English
11) Family caregiver English fluency
i. Referent Patient with beginner or intermediate English
ii. CEng Family caregiver with advanced English
12) Patient-Caregiver relationship
i. Referent Extended family/relatives or close friends
ii. Relation1 Family caregiver a spouse/partner of patient
iii. Relation2 Family caregiver a child of patient

37
 Variable names / Measurement type Variables
13) Cancer Site
i. Referent Esophagus, lung, lymphoma or nasopharyngeal cancer
ii. Site1 Breast cancer
iii. Site2 Bladder or colorectal cancer
iv. Site3 Ovarian, prostate or uterine cancer
14) Cancer Stage
i. Referent Stage II cancer
ii. Stage1 Stage I cancer
iii. Stage3 Stage III cancer
15) Treatment type
i. Referent Chemotherapy, drugs, radiation or surgery
ii. Treatment More than 1 treatment type

The second set of data relates to the independent variables: patient level of distress and family

caregiver level of distress. The responses to the patient and family caregiver self-assessment of their

respective level of distress were solicited from the participants using the Kessler Psychological Distress

Scale questionnaire during the survey interviews (Appendices B and C). Details on the Kessler distress

scale is found in the section below. The third set of data constitutes the dependent variable: patient

quality of life. The self-reported quality of life data were collected from the patients using the Functional

Assessment of Cancer Therapy-General (FACT-G) Scale questionnaire, after the patients had responded

to the Kessler distress scale (Appendices D and E). The FACT-G scale is also described in the following

section. Following the Kessler distress K6 development in 2002, and FACT-G in 1993, both scales have

been validated and widely used in the Chinese populations in Hong Kong and China. While translation

and back-translation is an approach adopted in the development of a new scale, I have not translated and

back-translated the instruments, given the scales have already been tested and validated in several

studies of the Chinese populations.

38
3.4.2.1 Kessler Psychological Distress Scale (K6)

The short-form Kessler Psychological Distress Scale (K6) of non-specific psychological distress

was used to assess patient and caregiver level of distress in the study. Consisting of six core questions

that centred on non-specific psychological distress, the measure has been widely recommended as a

simple and valid means of assessing mental health (Furukawa, Kessler, Slade, & Andrews, 2003). K6

asked that respondents rate how frequently they experienced symptoms of general anxiety and

depression during the past thirty days on a five-point scale (from 1= all of the time to 5 = none of the

time) (Kessler et al., 2003). The items were reverse coded, where a higher score indicated greater

distress. Responses to the questions were summed to form a scale, ranging from 6 (no distress) to 30

(severe distress). In consultation with the K6 Scale developer, the scores were re-scaled to the range of 0

to 4 for this study, where 0 represented “none of the time” and 4 represented “all of the time.” The sum

of the scores would range from 4 to 24, from no distress to severe distress. The rescaling was

implemented to facilitate transition of participants from the K6 to the longer FACT-G quality of life

scale during data collection, where the longer FACT-G scale adhered to the 0-4 scoring system.

The Kessler Psychological Distress Scale has been translated into 35 different languages

(including Cantonese and Mandarin) and has been used in WHO World Mental Health Surveys carried

out in 30 countries, including Hong Kong and Mainland China. K6 was tested to have good precision in

the 90th-99th percentile range of the population distribution. The scale was also reported to have strong

discrimination ability, with high probability to accurately distinguish a randomly chosen case from a

randomly chosen non-case of psychological distress based on their screening scale scores (area under the

curve (AUC) = 0.88), (Kessler et. al, 2002). The Chinese version of the instrument has been reported to

have good reliability and validity for evaluation of mental health status in the Chinese population in

China, with test-retest reliability of 0.7, split-half reliability of 0.71 and Cronbach alpha of 0.8 (Zhou,

39
Chu, & Wang, 2008). The English and traditional Chinese versions of K6 are attached, as per

Appendices B and C.

3.4.2.2 Functional Assessment of Cancer Therapy-General (FACT-G)

The Functional Assessment of Cancer Therapy-General (FACT-G) scale was used to measure

patient quality of life (QOL). The FACT-G is a self-report questionnaire that consists of 27 items that

measure the following four domains of patient quality of life/well-being, as a function of treatment:

physical (7 items), social/family (7 items), emotional (6 items), functional (7 items) (Cella & Tulsky,

1993; Cella et al., 1993). Respondents were asked to rate each item on a five-point scale (from 0 =Not at

all to 4 = Very much) based on a recall period of seven days. Items that were negatively stated were

reverse coded, where a higher score indicated better QOL. The scores in each domain were summed to

obtain subscale scores, which were subsequently summed to a total score (referred to as “QOL total”

from hereon). The last item in the social/family subscale relates to the patient’s current level of

satisfaction of sexual activity (“I am satisfied with my sex life”); instruction for proceeding with the

survey for those participants opting not to respond to this item was indicated in the questionnaire. I am

cognizant that query on sexuality from a younger female person, not from the family, may be perceived

as intrusive and lacking in propriety, and had omitted the item during the survey interview. The item

was treated as missing data, as per the FACT-G scoring protocol.

The Functional Assessment of Cancer Therapy-General instrument has been translated into over

60 languages, including Cantonese and Mandarin. The FACT-G has been used in the Chinese cancer

population to assess quality of life of patients living in Taiwan and Hong Kong (M. L. Chen, Chu, &

Chen, 2004; Yu et al., 2000). The FACT-G was reported to have high coefficients of reliability and

validity, and sensitivity to clinical change (Cronbach alpha = 0.89, test-retest reliability = 0.92) (Cella et

al., 1993; Yu et al., 2000). The Chinese version of the FACT-G has reported good reliability, with

40
Cronbach alphas ranging from 0.85 to 0.87. The English and traditional Chinese versions of FACT-G

are attached, as per Appendices D and E.

3.4.3 Variables formulation

From the conceptual framework, the dependent variable assessed in the study was patient quality

of life (QOL). In addition to overall QOL (based on the FACT-G total scores), the FACT-G subscales

were examined separately as dependent variables, to ascertain patient QOL with respect to each subscale

of well-being, where the subscales may have varying degree of importance in relation to the independent

variables. In the study, patient distress and family caregiver distress were identified as the key

independent variables in relation to patient QOL. The covariates in the study were: Patient age, family

caregiver age, patient sex, family caregiver sex, patient education level, family caregiver education

level, patient English fluency, family caregiver English fluency, patient length of stay in Canada, family

caregiver length of stay in Canada, patient-caregiver relationship, family caregiving duration, cancer

site, cancer stage and number of treatment types. These covariates were used as independent variables

when the associations between patient QOL and factors relating to patient, illness-related, social/family

and family caregivers were explored. To examine the potential mediating effects of patient distress and

family caregiver distress on patient QOL, patients and family caregivers respective distress levels were

assessed as independent variables in the regression analyses, concurrently with the covariates in the

study. The patient language group variable was used to compare the Chinese-speaking and Anglophone

participants groups.

Variables measured on continuous scales were patient QOL total and QOL subscales, patient and

family caregiver distress level, patient and family caregiver age, years patients have lived in Canada, and

years family caregivers have lived in Canada and months of caregiving. The binary variables were sex

(1 for male; 0 for female) of patients and family caregivers, English fluency (1 for advanced English; 0

41
for beginner or intermediate English) of patients and family caregivers and treatment type (1 for more

than one treatment type; 0 for chemotherapy, drugs, radiation or surgery). Categorical variables coded as

dummy variables in the regression analysis included education level, relationship, cancer site and cancer

stage.

The education level of the participants was reported to span from high school to advanced

degree. Two dummy variables were introduced to represent two levels of patient education: PEd1 for

high school and PEd2 for university or advanced degree. PEd1 was coded 1 for patients with high school

education, and 0 for patients with post-secondary, university or advanced degree; PEd2 was coded 1 for

patients with university or advanced degree, and 0 for patients having high school or post-secondary

education. Consequently, post-secondary education was the reference category in the regression

analysis. Similarly, two dummy variables were introduced to represent the education level of family

caregivers: CEd1 was coded 1 for family caregivers with high school education, and 0 for those with

post-secondary, university or advanced degree; CEd2 was coded 1 for family caregivers with university

or advanced degree, and 0 for those with high school or post-secondary education.

Family caregivers in the study included spouses/partners, (adult) children, parents, extended

family/relatives and close friends of the patients. To represent the type of relationship between the

patients and family caregivers in the study sample, two dummy variables were introduced: Relation1 for

spouse or partner of the patient and Relation2 for child of the patient. Relation1 was coded 1 for family

caregivers who are spouses or partners of the patients, and 0 for children, parents, extended

family/relatives or close friends of patient; Relation2 was coded 1 for family caregivers who are children

of the patients, and 0 for spouses/partners, parents, extended family/relatives or close friends of the

patients. The latter (extended family/relatives or close friends) was accordingly regarded as the reference

category in the regression analysis.

42
 The cancer sites reported in the sample included: bladder, breast, colorectal, esophagus, lung,

lymphoma, nasopharyngeal, ovarian, and prostate. Three dummy variables were introduced to represent

the cancer sites of the patients: Site1 was coded 1 for breast cancer, and 0 for all other cancer sites; Site2

was coded 1 for bladder and colorectal cancer, and 0 for all other cancer sites; Site3 was coded 1 for

ovarian, uterine and prostate cancer, and 0 for all other cancer sites. The cancer sites in the reference

category were esophagus, lung, lymphoma and nasopharyngeal. To represent the 3 stages of cancer

related to the respective patient’s diagnosis, two dummy variables were introduced: Stage1 and Stage3.

Stage1 was coded 1 for patients with Stage I cancer, and 0 for Stage II or III cancer. Stage3 was coded 1

for patients with Stage III cancer, and 0 for Stage I or II cancer. The reference category was Stage II

cancer. Description of study variables is presented in Table 1.

3.4.4 Data structure and imputation

To examine the direct and indirect effects of patient distress and family caregiver distress,

regression analyses were performed on the combined data of the Chinese-speaking and Anglophone

participant groups, as well as separately for each language group. The combined data of both language

groups yielded 57 observations: 38 patient-family caregiver dyads, 17 patients without family caregiver

data, and 2 family caregivers without patient data. The number of observations in each language group

was approximately equal: 29 in the Chinese-speaking group and 28 in the Anglophone group. Given the

small sample size from each language group, the data were combined to provide sufficient power to

detect statistical significance. The dataset for quantitative analysis was set up using a dyadic structure,

where each observation constituted patient data and the corresponding family caregiver data.

As dyadic participation was not a condition for participation in the study, it was anticipated that

there would be incomplete data resulting from non-participation of either the patient or the family

43
caregiver. Several options for dealing with the missing values resulting from incomplete dyads were

considered:

1. Analyze only the available data, that is, using only 38 dyads with complete data and exclude

the 19 non-dyadic observations that constituted the missing cases;

2. Impute a small proportion of missing values; possibly conducting imputation for missing

patient data from the two family caregivers data collected. That is, there were two cases

when only caregiver data were available, and patient data could be imputed for these two

cases enabling analysis of 40 dyads;

3. Revise hypotheses to examine non-dyadic responses, conducting analyses on 55 patients and

40 family caregivers as individual observations;

4. Conduct multiple imputations for missing values of the 19 individuals with incomplete

dyads.

Option 1 may be comparable to casewise deletion that assumes the missing data are trivial and

are missing completely at random. In real world data, the assumption of missing completely at random

(MCAR) is a rare occurrence (Graham, 2012). The dyadic partners of the individuals with missing data

may have decided not to participate for reasons related to the actual values missing (e.g. choosing not to

participate because of high distress or low quality of life). With almost a third of the dyads with

incomplete data, the missing data on 19 individuals cannot be considered a trivial omission, and

substantial reduction in cases will undermine validity of the study results. When these assumptions are

violated, it cannot be said that the estimates are efficient or unbiased.

The same concern may be said of option 2, when 17 missing cases are ignored. For option 3, a

point to note is that the data are not independent, in cases where the patient and family caregiver

participants are from the same family, or are related. It follows that analysis on the combined sample of

44
55 patients and 40 family caregivers will violate the assumption of independence of data. A further

argument for adhering to analysis of dyadic responses is that there is limited existing evidence on the

study topic of the interrelatedness of patient and their family caregiver distress and quality of life among

culturally diverse populations. As such, it will be important to investigate the complexities of patient and

family caregiver interaction by examining dyadic responses, with the goal to contribute to findings as

well as lessons for future research of such nature.

While there are various ways of handling missing values, I have chosen option 4, to maximize

efficient use of the data by correcting for missing data. To retain 57 dyads in the analysis, missing values

to 17 caregivers and 2 patients were imputed using multiple imputation methods. Multiple imputation

(MI) technique assumes that data are missing at random (MAR), which means that the missing

responses depend on (or can be explained by) other variables included in the dataset. However, the

missing data are assumed to be independent of any (unobserved or unknown) variables that are not part

of the dataset. This is less restrictive than the assumption of missing completely at random (MCAR), as

in casewise deletion, where the missing data are assumed to be independent from any other observed or

unobserved variables (i.e., the absence of data, or missingness) cannot be explained by other variables

included in the dataset). With a less restrictive assumption on missingness, MI allows for additional

variability due to the unknown missing values by imputing more than one value for the missing item

(Graham, 2012). This is obtained by replacing each missing data by a vector composed of a number of

possible values predicted over the multiple imputations of data sets. By taking uncertainty in the

imputation into account, MI is said to be a more conservative approach with less risk of a Type I error

(with greater standard errors for the imputed values)(Rubin, 1987).

With missing data on 19 observations (17 patients without caregiver’s participation; 2 caregivers

without patient’s participation), some variables in the study were reported to have up to 30% of missing

45
data. MI can address the missing data problem, even with sample sizes as low as 50, and with as much

as 50% missing from most variables in the dataset (Graham & Schafer, 1999). While MI cannot

compensate for the limitations of a small sample, it can allow for effective use of all data that were

collected. Nonetheless, caution is to be exercised when interpreting the imputed values (Gyimah, 2001).

Therefore, the analyses were repeated using the complete data of 38 dyads to compare results and

determine the extent to which conclusions may have differed as a result of the two different approaches

to dealing with missing data.

Prior to imputation of missing values, mean computation was performed on each of the FACT-G

subscales (Physical, Social/Family, Emotional, Functional) and on the Kessler distress total scores scales

for patients and for family caregivers. The mean scores were computed based on an individual’s

responses to the items that do not have missing responses. Using the NORM 2.03 program (Schafer

1997), MI was performed to impute missing values of all variables with incomplete data. While the

general practice in MI involves imputation of item scores in order to minimize estimation bias, MI was

performed on FACT-G subscales scores for this study due to its small sample size; total scores were

computed after MI of subscale scores. Similarly, MI was performed on Kessler distress total scores for

the patients and for the family caregivers, and not on individual items of the distress scales. With only

57 observations in the study, imputing individual item scores will substantially expand the number of

variables. In the case of the FACT-G scale comprising of 26 items across 4 subscales, each item would

constitute an additional variable for MI, if item-level imputation was used. The consequence of a

relatively large number of variables to be estimated in a small sample size is the failure to produce

results, following iterations of the maximum likelihood estimation to obtain convergence of solutions.

Consistent with experts’ recommendations, 10 datasets were imputed in the study, as imputing

more than 10 datasets will have marginal gain in efficiency (Rubin, 1987). Imputed values were not

46
rounded because rounding constitutes adding unnecessary random error variance to the imputed values

(Graham, 2012). Considering the small sample size in the study, a small variation may have a significant

impact on the statistical significance of the parameter estimates (e.g. one outlier may influence the

results substantially.

3.4.5 Statistical analysis methods

SPSS 22 software was used for statistical analysis. The assumption of normality for all

continuous variables within the combined data sample and separately in the Chinese-speaking and

Anglophone groups was tested. Kurtosis and skewness statistics of +2.58 were used as the criterion of

normality for small sample size (Field, 2005); boxplots were also examined for cases of extreme

outliers. The assumption of linearity between the QOL dependent variables (QOL total scores, Physical

well-being subscale, Social well-being subscale, Emotional well-being subscale, Functional well-being

subscale) and all other continuous variables across the sample groups was tested through scatterplots.

Pearson correlations were computed, to assess the bivariate associations between the continuous

variables. To examine the associations between the dependent variables and the categorical variables,

each categorical variable was regressed on the QOL total scores and on the FACT-G subscales in

separate regression models. T-tests were conducted to test group difference for the continuous variables.

The chi-square test was used to investigate difference between the Chinese-speaking and Anglophone

groups for the categorical variables.

3.4.5.1 Multiple linear regression

Multiple linear regression was performed using the combined sample, and the respective

Chinese-speaking and Anglophone samples for comparison across groups, to test for: i) direct effects of

patient, illness-related, social/family, and family caregiver factors as well as patient and family caregiver

47
distress on patient QOL, and ii) indirect effect of the factors on patient QOL through patient and family

caregiver distress.

First, each QOL dependent variables (QOL total scores and QOL subscales scores) was

regressed on the patient and family caregiver distress variables and on the significant covariates (as

informed by the bivariate analyses). These regressions were conducted to assess for effects of the

distress variables on QOL, while controlling for the covariates. Second, the distress variables were

regressed on the covariates that had statistically significant bivariate associations, to assess for the direct

effect of the factors on patient distress. Third, the indirect effects of the associated factors on QOL were

assessed, first by regressing the QOL variables on the covariates that were significant in step 1 of the

multiple regression, followed by computation of the indirect effects using results from step 1 and step 2

of the regressions. Indirect effects were computed by taking the effect of distress on QOL from the

multiple regression at step 1 and multiplying it by the effect of the identified factor on distress, as

informed by results from step 2 of the multiple regression (MacKinnon, 2008). Tests for group

difference in the effects of the independent variables on QOL (and subscales) in each multiple

regression model were conducted, using interaction terms of the grouping variable and each independent

variable (1=Chinese-speaking; 0=Anglophone).

From the study framework, the bidirectional arrows between patient distress and family

caregiver distress variables suggest the possibility that the distress variables could influence one another,

representing a reciprocal effect. The interrelatedness of the distress variables was first examined through

the bivariate analysis, and followed up with multiple regression where the effects of the factors on QOL

were controlled. Assessing the impact of the reciprocal associations between the distress variables on

QOL would involve examining the looping effects on the direct and indirect effects on QOL, where

sufficient degrees of freedom would be required to estimate the model (MacKinnon, 2008). Considering

48
the limitation in estimating such effects in a small sample, repeated mediation arising from reciprocal

associations between the distress variables was not examined in this study.

The assumptions for normality, linearity, outliers, homoscedasticity, outliers, independence of

errors (residuals), and multicollinearity of residuals were tested for each regression model across all

groups (Chinese-speaking, Anglophone and combined sample, where, n = 29, 28 and 57 respectively),

using the criteria outlined in Tabachnick and Fidell (Tabachnick & Fidell, 2007). Kurtosis and skewness

statistics of +2.58 were used as the criterion of normality for small sample size (Field, 2005). Residuals

scatterplots of each model were examined for compliance to the assumptions of normality, linearity and

homoscedasticity between predicted dependent variable scores and errors of prediction. With reference

to the criteria indicated in Tabachnick and Fidell (2007), the assumptions tested included: (i) residuals

(differences between obtained and predicted dependent variable scores) are normally distributed about

the predicted dependent variable scores; (ii) residuals have a linear association with the predicted

dependent scores; (iii) variance of the residuals about the predicted dependent variable scores is the

same for all predicted scores.

In addition to screening for extreme outliers by examining boxplots of the independent variables

and covariates, residual plots were also assessed for compliance to the assumption that outliers were

influencing the regression solution. Durbin-Watson statistics were examined, where values of less than 1

or greater than 3 would denote concerns for non-independence of errors, or presence of autocorrelation

of errors. Multicollinearity and singularity (variables redundancy) was also checked. When the

correlation between independent variables exceeded .7, and when the largest variance inflation factor

(VIF) was greater than 10 (or tolerance (1/VIF) below .1), there would be reason for concern of

multicollinearity (Field, 2005).

49
 Scatterplots were used to examine the associations between the dependent variables with each of

the continuous independent variables. Negative linear associations were largely observed between QOL

dependent variables and patient distress. There was, however, no clear linear association between QOL

dependent variables and any other independent variables or covariates observed in the scatterplots.

3.4.5.2 Power analysis

Based on Cohen (1992) criteria of effect size, the number of participants needed to detect a large

(f 2=.35) and medium (f 2=.15) effect size when taking the standard alpha level of .05 and the

recommended power of .8 would be 74 and 149 participants, respectively for multiple regression with

18 independent variables. While all covariates in the study are considered in the power calculation, it is

plausible that a number of the variables will not be statistically significant in the regression. For

instance, with 10 independent variables, and similar convention of alpha (.05) and power level (.8), the

number of participants required to detect Cohen’s criteria of large and medium effect size would be 57

and 118, respectively (see Figure 2)(J. Cohen, 1992). The power analysis based on different numbers of

independent variables in the multiple regression of the study is charted, as per the power calculation

graph below. The final study sample of 57 observations was largely determined by feasibility in primary

data collection involving participation from the cancer patients and their family caregivers. With a

sample size of 57 observations, there would be sufficient power to detect large effect size for multiple

regression with 10 independent variables, at alpha level of .05 and power of .8 (J. Cohen, 1992).

Figure 2: Power calculation for large and medium effect sizes in multiple regression

50
3.5 Qualitative methods

The qualitative analysis is based on interviews with a subset of the Chinese-speaking survey

participants. Adapting Emerson et al.’s (1995) ethnographic approach to analyzing field notes, the initial

stage of the data analysis involved open coding of the interview notes to identify themes. Through an

iterative process involving repeated viewings of the interview notes and audio recordings, the coding

scheme of the study was developed. To compare patient and family caregiver responses to issues of

distress and quality of life following a cancer diagnosis, the interview data were examined within the

patient-family caregiver dyad, in addition to the coding at the individual level. Further insights drawn

from the analysis of the dyadic data were integrated with the findings that emerged from the data at the

individual level.

3.5.1 Objectives and phenomenon of interest

To examine the cancer experience of Chinese-speaking patients and their family caregivers in

relation to their psychological distress and to patient quality of life, semi-structured interviews were

conducted. The structural relations of the key elements identified in the conceptual framework were also

51
investigated through the qualitative analysis. In particular, the interrelatedness between patient distress

and family caregiver distress on patient QOL was explored through the semi-structured interviews,

where clarification on family dynamics following a cancer diagnosis was sought.

Adopting a funnel approach, the interviews began with broad questions on the participants’

overall experience with cancer, followed by more focused questions on their experience of distress and

quality of life. Specifically, the interviews were centred on clarifying the phenomena identified in the

cross-sectional survey, to provide insights into the following key issues: what constitutes distress for

patients and for family caregivers; why might it be more for some and less for others; how might these

experiences of distress play out in patient QOL measures; to what extent does the experience of cancer

differ, based on cultural background and migrant history. The semi-structured interview guides for

patients and for family caregivers are attached, as per Appendices F and G.

The qualitative approach used in the study does not constitute an ethnography, which would

involve researcher’s participation as well as observation of the participants’ environment, from the view

point of the individuals. In my study, I have used a set of guiding questions during the semi-structured

interviews, which were deployed as prompters in the conversations with the participants about their

cancer experience. While the questions may appear prescriptive, the approach I have adopted allowed

flexibility in the way that the questions were posed. Further, the questions were open to the

interpretation by the interviewees, providing an inductive means of soliciting responses from each

individual interviewed.

3.5.2 Analytical approach

Between February and October 2013, ten Chinese-speaking patients and six family caregivers

were interviewed. Of the ten patients who participated in the interview, family caregivers of five patients

were also interviewed, providing data of five dyads for the analysis. Where interviewees provided their

52
consent, interviews were audio-recorded (N= 11). Jottings were also taken during the interviews, with an

attempt made to capture key verbatim quotes that serve to highlight the comments of participants. These

were written up into field notes following each interview; contextual information relating to non-verbal

responses to the issues raised in the interviews were also included in the field notes.

The complexities of translation in qualitative research have been widely discussed, particularly

in relation to the challenges pertaining to the transfer of meaning across different cultural contexts

through interlingual translation (van Nes, Abma, Jonsson, & Deeg, 2010). Notably, qualitative

researchers who conduct their studies in one language are faced with the task of understanding and

interpreting participant experiences as the respondents wish them to be understood (Santos, Black, &

Sandelowski, 2015). For researchers undertaking cross-language studies, Santos and colleagues (2015)

note that there is the added complication of transforming the participants’ words – “life-as-told from a

source to a target language, to a life-as-told-as-translated and then to a life-as-interpreted-from-

translation (p.135).”

The difficulty with translation relates not only to language itself but also to the cultural variation

between the source and target language (H. Y. Chen & Boore, 2010). In up-front transcription and

standard translation, which generally strive for word equivalence, these procedures assume that the same

meaning in the source language is also present in all target languages (Larkin, Dierckx de Casterlé, &

Schotsmans, 2007; Twinn, 1997). However, Larkin notes that the assumption of true equivalence in such

approaches to translation disregards the capacity of each language in creating its own meaning, thereby

resulting in the loss of meaning through the interpretation and representation process of the participants’

narratives. Translation dilemmas thus include the efficient use of available time and financial resources,

timing of translation spanning across research process, language and cultural competency of translators,

as well as the context and analytical role of the translator as they relate to improving the cross-language

53
trustworthiness of the studies (Larkin et al., 2007; Santos et al., 2015; Squires, 2009; Temple & Young,

2004; Twinn, 1997; van Nes et al., 2010). In studies that involve multiple researchers with differing

language competencies, the challenges of cross-languages qualitative research become even more

prevalent.

In light of my immersion in the culture and language of the participants, I undertook the tasks of

data collection and analysis in the study, working with the source languages (Cantonese and Mandarin)

and target language (English). Further, my role as the researcher and translator alerted me to problems of

cross-cultural interpretation and meaning equivalence. At the same time, I am aware that the translated

words of the participants in the chapters that follow are the presentations of my interpretation and there

will not be a single correct translation of the text.

The coding scheme in my study was developed through an iterative process involving repeated

viewings of the interview notes and audio recordings. Although it is common practice to transcribe and

translate (and often back-translate) interviews in qualitative health research, because of my linguistic

skills and understanding of the culture as a Chinese person, my analysis was instead developed out of a

repeated movement between my interview notes and the audio recordings themselves. This enabled me

to continually engage with the interview data as spoken and in context. This approach to data analysis is

in line with approaches to interview data common in disciplines such as anthropology (Emerson, Fretz,

& Shaw, 1995).

Adapting Emerson et al.’s (1995) approach to analyzing field notes, the initial stage of the data

analysis involved open coding of the 15 sets of interview notes, to identify and formulate the range of

themes in the data. As the analysis progressed, focused coding was employed, with notes coded on the

basis of emerging topics that were of particular interest. NVIVO software was used to facilitate the

coding of the interview notes. In the initial phase of coding, the data were first categorized according to

54
the three main sections of the interview script: experience with cancer, patient-family caregiver

relationship and cultural issues for Chinese cancer patients. Sub-codes were created under each of the

main sections, as common themes emerged from the interviews, and further re-categorized, integrating

overlapping themes to form broader concepts that reflected the interviewees’ narratives. When coding

was completed, each set of interview notes was reviewed in its entirety and the audio recordings were

listened to, in full, to contextualize the codes. Where particular subject matters were repeatedly

mentioned or that the interviewees had spoken in depth on the issues raised, the codes associated with

these topics were highlighted to reflect the participants’ perspective of the emerging themes.

Aligned with the intent to compare patient and family caregiver responses to issues of distress

and quality of life following a cancer diagnosis, the interview data were also examined within the

patient-family caregiver dyad. Using a parallel approach for analyzing the interview data of the dyads,

each set of interview notes was reviewed and insights were developed, with key information extracted in

relation to what the patient and the family caregiver member of the dyad said about the respective issue

that emerged from the earlier coding of the individual interviews. The audio recordings of the dyads

were again listened to for additional information that highlighted the corresponding perspective of the

dyadic member towards each of the emerging issues identified in the coding. In each dyad, the

similarities and differences of the patient and the family caregiver views on the identified issues were

mapped out. The information exacted from the mapping of the dyadic responses was compared with that

from the data coded at the individual level; where there was new information, insights drawn from the

analysis of the dyadic data were integrated with the findings that emerged from the data at the individual

level.

55
3.6 Ethical considerations

The study protocol was reviewed and approved by the University of British Columbia

Behavioural Research Ethics Board and the Vancouver Coastal Health (VCH) Research Institute for

recruiting study participants in hospitals of VCH, prior to the commencement of data collection. I had

explained the requirements and processes of the study to participants over the phone, each of whom

were provided a copy of the form available in English or Chinese. As a certified counsellor with the BC

Association of Clinical Counsellors, I have used my professional knowledge and skills to attune to

participants’ emotional status and pace the survey and semi-structured interviews, so that participants’

welfare was safeguarded during data collection. Information on counselling services at the BC Cancer

Agency was also provided to the patients and family caregivers, to ensure that resources were available

for participants requiring counselling, to address issues that may have arose from participation in the

study.

Summary

This study used a cross-sectional survey of Chinese-speaking (study population) and

Anglophone (comparison group) patients (N = 55) and their family caregivers (N = 40) to examine

patient QOL and correlates. Multiple imputation of missing data for incomplete dyads resulted in data

for 29 Chinese-speaking and 28 Anglophone dyads. Multiple linear regression and mediation analyses

were conducted to examine the predictors of QOL, and its domains, and the mediation effects of patient

distress and family caregiver distress. A subset of the Chinese-speaking survey participants comprising

ten patients and six family caregivers, including five patient-family caregiver dyads, also participated in

semi-structured interviews. The analysis of culturally-embedded experiences of patients and family

caregivers regarding their distress and QOL was conducted, to provide further context and explanation

56
for the findings from the quantitative analysis. The study findings are presented in the following chapter,

reporting first on the results from quantitative analyses, followed by results from the qualitative analysis.

57
Chapter 4: Results

Results from the quantitative and qualitative analyses are presented in this chapter. Findings

from the quantitative analyses are reported, followed by qualitative results. For the quantitative results, a

description of the sample of patients and family caregivers (n = 57 dyads) from both the Chinese-

speaking (n = 29) and Anglophone (n = 28) groups is first presented. Second, results are described

pertaining to the direct effects of patient factors, illness-related factors, social/family factors and family

caregiver factors, including the corresponding bivariate and multivariate associations. Third, results

relating to the mediation effects of patient and family caregiver distress on patient quality of life (QOL)

are provided. Finally, the results of the post-hoc analyses based on the sample of 38 dyads (prior to

multiple imputation) are reported to assess the potential implications of missing data.

The findings from the qualitative analysis are based on semi-structured interviews with 16

Chinese-speaking survey participants. Insights are offered into the cancer experience of the patients and

their family caregivers, in relation to their psychological distress and to patient QOL in the context of

relationships in the Chinese family. Particularly, results regarding the interrelatedness between patient

distress and family caregiver distress on patient QOL are reported. The background of each interviewee

(10 patients and 6 family caregivers) is described, to provide contextual information to the interview

responses. Cross-cutting themes relating to patient distress, family caregiver distress and patient QOL

that emerged from the interviews are then highlighted and illustrated with quotes from the interviewees.

4.1 Quantitative analysis

4.1.1 Sample description

The sample consisted of 29 Chinese-speaking and 28 Anglophone dyads (Table 2. See Appendix

H for descriptive summary of 19 dyads with incomplete information). The average age of patients was

similar in the Chinese-speaking and Anglophone groups, 57 and 56, respectively. Family caregivers in

58
the Chinese-speaking group were much younger (mean age 39 years) than those in the Anglophone

group (mean age 62 years). The duration of caregiving averaged 10 months and was also approximately

equal across the two groups. The mean scores of patient distress were lower in the Chinese-speaking

group than in the Anglophone group, whereas the mean scores of family caregiver distress were

approximately equal in both groups. For patients, the mean QOL scores were higher in the Chinese-

speaking group than in the Anglophone group, where Chinese-speaking patients reported higher

physical, emotional and functional well-being than patients in the Anglophone group.

Statistically significant differences between groups were found in the number of years that

patients (t = 10.07, p < .001) and family caregivers (t = 8.40, p < .001) had lived in Canada, family

caregiver age (t = 3.34, p = .003), and patient (χ2 = 32.31, p < .001) and family caregivers (χ2 = 29.49, p

= .04) English fluency. Not surprisingly, the number of years that patients and family caregivers lived in

Canada was much smaller in the Chinese-speaking sample than in the Anglophone sample. Family

caregivers in the Chinese-speaking sample were also younger, whereas the average age of patients was

similar in both groups. As expected, the percentage of patients and family caregivers who reported

advance English fluency was smaller in the Chinese-speaking group. The groups were similar with

respect to all other variables.

59
Table 2: Descriptive summary of patients and family caregivers in combined sample, Chinese-speaking and Anglophone group

Combined Group (N = 57) Chinese Group (n = 29) Anglophone Group (n = 28)

Patient Caregiver Patient Caregiver Patient Caregiver
Variables Pooled Mean (SD)
QOL total 83.4 (17.6) -- 85.9 (17.2) -- 80.9 (18.0) --
Physical well-being 20.9 (6.2) -- 21.7 (5.3) -- 20.2 (7.0) --
Social well-being 24.0 (4.41) -- 23.7 (4.7) -- 24.3 (4.1) --
Emotional well-being 18.9 (5.4) -- 20.3 (4.6) -- 17.5 (6.0) --
Functional well-being 19.6 (5.9) -- 20.3 (5.6) -- 18.9 (6.3) --
Distress total score 5.2 (4.7) 4.6 (4.6) 5.0 (4.3) 4.6 (4.6) 5.4 (5.1) 4.6 (4.7)
Agea 58.6 (11.8) 50.7 (22.2) 57.5 (10.6) 39.2 (19.5) 56.2 (13.1) 62.5 (18.1)
Years lived in Canadaa 38.8 (21.4) 37.9 (26.8) 21.9 (9.7) 16.1 (11.8) 56.4 (15.3) 60.5 (17.3)
Months of caregiving -- 10.5 (6.3) -- 10.5 (7.2) -- 10.6 (5.2)
Counts (%)
Sex:
Femalec 45 (78.8) 25 (44.6) 23 (77.8) 15 (51.6) 22 (79.9) 10 (37.3)
Male 12 (21.2) 32 (55.4) 6 (22.2) 14 (48.4) 6 (20.1) 18 (62.7)
Education:
Post-secondaryc 19 (33.5) 18 (32.8) 6 (22.6) 5 (19.2) 12 (44.7) 13 (47.1)
High school 23 (39.4) 11 (18.5) 14 (47.1) 4 (13.2) 9 (31.4) 7 (23.9)
University or advanced degree 15 (27.1) 28 (48.7) 9 (30.3) 20 (67.6) 7 (23.9) 8 (29.0)
English fluencyb:
Beginner or intermediatec 21 (37.1) 12 (21.4) 21 (73.3) 12 (39.9) 0 (0) 1 (2.3)
Advanceda 36 (62.9) 45 (78.6) 8 (26.7) 17 (60.1) 28 (100) 27 (97.7)
Patient-family caregiver relationship type:
Extended family/relatives or close friendsc -- 9 (16.1) -- 4 (15.3) -- 5 (16.9)
Spouse/partner -- 32 (56.1) -- 11 (36.8) -- 21 (76.1)
Children -- 16 (27.8) -- 14 (47.9) -- 2 (7.0)
Cancer site:
Esophagus, lung, lymphoma or nasopharyngealc 7 (12.3) -- 3 (10.3) -- 4 (14.2) --
Breast 28 (49.1) -- 16 (55.2) -- 12 (42.9) --
Bladder or colorectal 13 (22.8) -- 6 (20.7) -- 7 (25.0) --
Ovarian, prostate or uterine 9 (15.8) -- 4 (13.8) -- 5 (17.9) --
Cancer stage:
Stage I 14 (24.6) -- 6 (20.7) -- 8 (28.6) --
Stage IIc 18 (31.5) -- 8 (27.6) -- 10 (35.7) --
Stage III 25 (43.9) -- 15 (51.7) -- 10 (35.7) --
Treatment type:
Chemotherapy, drugs, radiation or surgeryc 14 (25.4) -- 6 (20.6) -- 9 (30.4) --
More than 1 treatment type 43 (74.6) -- 23 (79.4) -- 19 (69.6) --
Note. a = t-test of group difference between Chinese-speaking and Anglophone samples significant at 5% level for the following variables: caregiver age, years patient lived in
Canada, years caregiver lived in Canada. b = Chi-square of independence between Chinese-speaking and Anglophone samples significant at 5% level for the following
variables: patient with advanced English, caregiver with advanced English. c = referent in the regression analyses.
60
4.1.2 Bivariate analyses

The significant bivariate associations with the QOL variables in the combined sample and for the

Chinese-speaking and Anglophone groups are presented in Tables 3, 4 and 5 (see Appendices I through

N for detailed results of all bivariate analyses). In addition to patient and family caregiver distress, only

those variables that had significant associations with any of the QOL variables in the combined or in the

separate groups are considered. In the combined sample and Anglophone group, statistically significant

bivariate correlations (with QOL total) were observed only for patient distress and patient age. Patient

distress was negatively related to QOL total, and patient age was positively related to QOL total. Patient

age was not significantly related to QOL total in the Chinese-speaking group. None of the other

variables had statistically significant associations with QOL total in the Anglophone and Chinese-

speaking groups.

Patient distress was negatively correlated with all QOL subscales in both Chinese-speaking and

Anglophone groups, as well as in the combined sample. In both groups, the largest correlation pertained

to the association between distress and emotional well-being. In the combined sample, patient age was

positively correlated with social well-being and emotional well-being, but not with physical well-being

or with functional well-being. Patient age was not significantly correlated with any of the QOL

subscales in the Chinese-speaking group, although a negative association was found between Stage III

cancer (versus Stage II cancer) and physical well-being in this group. Having a high school education

(versus having post-secondary education) was also found to be negatively associated with social well-

being in the Chinese-speaking group and in the combined sample. In the Anglophone group, both patient

age and years lived in Canada were positively correlated with emotional well-being, but not with the

other QOL subscales.

61
Table 3: Summary of bivariate associations with QOL total and QOL subscales for combined sample
(N=57)
Patient Caregiver Patient age a Patient with high Patient with
distress a distress a school education university/
(vs post- advanced degree
secondary (vs post-
education)b secondary
Variables education)b
QOL total -.80** -.10 .30* -.10 -.12
Physical well-being -.62** .11 .11 -.13 -.18
Social well-being -.54** -.18 .32* -.36* -.15
Emotional well-being -.76** -.06 .45** .06 -.14
Functional well-being -.66** -.23 .14 .06 .09
Patient distress - .09 -.34* .07 .12
Caregiver distress .09 - -.14 -.01 -.17
Note. a = Pearson correlations. b = standardized regression coefficients of dummy variables for education level.
*p < .05, **

Table 4: Summary of bivariate associations with QOL total and QOL subscales for Chinese-speaking
group (n = 29)

Patient Caregiver Patient with Patient with Stage I Stage III

distress a distress a high school university/ cancer cancer
education advanced (vs (vs
(vs post- degree Stage II Stage II
secondary (vs post- cancer)c cancer)c
education)b secondary
Variables education)b
QOL total -.75** -.11 -.27 -.12 .05 -.23
Physical well-being -.57** -.03 -.14 -.11 .04 -.37*
Social well-being -.57** -.13 -.53* -.24 .11 -.04
Emotional well-being -.74** -.04 -.13 -.12 -.08 -.09
Functional well-being -.68** -.18 -.15 .04 .09 -.18
Patient distress - .08 .07 .13 .04 .24
Caregiver distress .08 - -.07 -.18 .19 .21
Note. a = Pearson correlations. b = standardized regression coefficients of dummy variables for education level.
c
= standardized regression coefficients of dummy variables for cancer stage.
*p < .05, **p < .01.

62
Table 5: Summary of bivariate associations with QOL total and QOL subscales for Anglophone group
(n = 28)

Patient Caregiver Patient age Years patient Caregiver

distress distress lived in age
Variables Canada
QOL total -.86** -.10 .43* .34 .25
Physical well-being -.66** .22 .28 .34 .20
Social well-being -.54** -.26 .13 .03 .12
Emotional well-being -.79** -.09 .59** .58** .39
Functional well-being -.64** -.29 .16 .04 .05
Patient distress - .10 -.48** -.34 -.43*
Caregiver distress .10 - -.32 -.08 -.17
Note. All values are Pearson correlations. *p < .05, **p < .01.

Notwithstanding the theoretical importance of family caregiver distress, none of the correlations

between this variable and the dependent variables were statistically significant in the study sample.

Particularly in the Chinese-speaking group, the magnitudes of the correlations for caregiver distress

were relatively small, and did not provide strong evidence to support the meaningfulness or importance

of the effects of family caregiver distress on patient QOL total and on the subscales. In the Anglophone

sample, the largest associations were observed between caregiver distress and social well-being and

functional well-being, with correlations of -.26 and -.29, respectively. Caregiver distress was, however,

found to be positively associated with physical well-being in the Anglophone group and in the combined

sample.

63
4.1.3 Multiple regression analyses

4.1.3.1 Direct effects of patient, illness-related, social/family and family caregiver factors on

patient QOL

The first hypothesis was evaluated by examining the direct effects of patient, illness-related,

social/family and family caregiver factors on patient QOL, after controlling for the distress variables.

Main hypothesis 1:

Patient factors (age, sex, education, migration duration, English fluency), illness-related

factors (cancer site/stage, treatment type), social/family factors (caregiving duration,

patient-family caregiver relationship), and family caregiver factors (age, sex, education,

migration duration, English fluency) are directly associated with patient QOL.

Patient distress and family caregiver distress were identified as key independent variables in

relation to patient QOL, as theorized in the framework. Patient age was included as an independent

variable in the regression on QOL total, being the only covariate that was significantly related with

QOL total, as informed by the bivariate analyses. To assess the direct effects of the factors across the

QOL subscales, regressions of each QOL subscale on the covariates that were significantly related to

the respective QOL dependent variable (as informed by the bivariate analyses), as well as the

distress variables, were performed. The covariates of the QOL subscales included cancer stage,

patient education, years lived in Canada. Patient age, which is correlated with social well-being and

emotional well-being, was also entered in these QOL subscales regressions. The regression models

and their associated hypotheses tested under Main Hypothesis 1 are as follows:

64
Main hypothesis 1: Regression models and associated hypotheses

Regression Models Hypotheses

Model 1a:
QOL total = b0 + b1*Patient distress + b2*Caregiver distress + H0 : b3 = 0
b3*Patient age + e H1 : b3 ≠ 0

Model 1b:
Physical well-being = b0 + b1*Patient distress + H0 : b3 = 0; H0 : b4
b2*Caregiver distress + b3*Stage I cancer + =0
b4*Stage III cancer + e H1 : b3 ≠ 0; H1 : b4
≠0
Model 1c:
Social well-being = b0 + b1*Patient distress + b2*Caregiver distress +
b3*Patient age + b4*Patient with high school
education + b5*Patient with university or H0 : b3 = 0; H0 : b4
advanced degree + e = 0;
H0 : b5 = 0
Model 1d: H1 : b3 ≠ 0; H1 : b4
Emotional well-being = b0 + b1*Patient distress + ≠ 0; H0 : b5 ≠ 0
b2*Caregiver distress + b3*Patient age +
b4*Years patient lived in Canada + e
H0 : b3 = 0; H0 : b4
=0
H1 : b3 ≠ 0; H1 : b4
≠0
Model 1e:
Functional well-being = b0 + b1*Patient distress + No hypotheses
b2*Caregiver distress + e associated with
patient, illness-
related,
social/family and
family caregivers
factors were
tested, as no
covariates were
significantly
related with
functional well-
being in the
bivariate analyses

Note. b0 = constant; bi = unstandardized regression coefficients; e = residual

65
Assumptions for linear regression were met in all regression models. None of the interaction terms used

in testing for group differences in the effects of the independent variables on QOL (and subscales) in the

multiple regression models were statistically significant. Pooled unstandardized and standardized

regression coefficients across the imputed datasets were reported; statistics provided in parentheses

indicates range over the imputed datasets. The regression results pertaining to Main Hypothesis 1 are

presented in Table 6.

66
Table 6: Main Hypothesis 1: Summary of multiple linear regression results

Model: Dependent variable Combined Sample Chinese Group Anglophone Group

Independent variables (n = 57) (n = 29) (n = 28)
B β B β B β
Model 1a: QOL total
Patient distress -2.99**- -.79** -2.98** -.79** -2.98** -.79**
Caregiver distress -0.12 -.03 -0.26 -.07 -0.07 -.02
Patient age 0.04 .03 0.13 .09 0.02 .01
R2 (.64, .67)** (.52, .64)** (.74, .77)**
Adjusted R2 (.62, .69)** (.46, .60)** (.70, .74)**
Model 1b: Physical well-being
Patient distress -0.85** -.64** -0.61* -.46* -1.01** -.76**
Caregiver distress 0.25 .19 0.04 .03 0.43 .32
Stage I cancer (vs Stage II cancer) -1.15 -.08 0.63 .05 -2.79 -.20
Stage III cancer (vs Stage II cancer) -1.86 -.15 -3.19 -.26 -1.40 -.12
R2 (.36, .51)** (.36, .56)* (.48, .59)**
Adjusted R2 (.31, .48)** (.25, .48)* (.39, .51)**
Model 1c: Social well-being
Patient distress -0.46** -.49** -0.59* -.63** -0.42* -.45*
Caregiver distress -0.11 -.12 -0.1 -.12 -0.18 -.19
Patient age 0.3 .09 0.08 .20 -0.01 -.04
Patient with high school education -2.72* -.31* -4.03* -.46* -1.25 -.14
(vs post-secondary)
Patient with university/advanced degree -0.86 -.09 -1.51 -.16 -0.92 -.10
(vs post-secondary)
R2 (.38, .43)** (.44, .58)* (.34, .44)
Adjusted R2 (.32, .37) (.32, .49)* (.19, .32)
Model 1d: Emotional well-being
Patient distress -0.79** -.68** -0.76** -.66** -0.76** -.65**
Caregiver distress 0.02 .02 -0.07 -.06 -0.02 .02
Patient age 0.14** .3** 0.13 .28 0.03 .07
Years patient lived in Canada -0.05 -.19 -0.08 -.30 0.12 .47
R2 (.59, .69)** (.50, .70)** (.72, .77)**
Adjusted R2 (.56, .67)** (.41, .66)** (.67, .74)**
Model 1e: Functional well-being
Patient distress -0.81** -.64** -0.88** -.69** -0.75** -.59**
Caregiver distress -0.23 -.18 -0.16 -.12 -0.3 -.23
R2 (.40, .54)** (.37, .62)** (.39, .57)**
Adjusted R2 (.38, .53)** (.32, .59)** (.34, .54)**
Note. A range in R-square values were generated as a result of multiple imputation. B = unstandardized regression
coefficients. β = standardized regression coefficients *p < .05, **p < .01.

67
 Model 1a. In Model 1a, the variables hypothesized to predict QOL total were patient distress,

family caregiver distress and patient age. Model 1a had the greatest explained variance in the

Anglophone group (R2 between .74 and .77, adjusted R2 between .70 and .74, p < .001). From the

statistical results, there was insufficient evidence to conclude that patient age was directly associated

with patient QOL total across all groups. Only patient distress was significant in the combined sample

and in the two groups, where patient distress was negatively related to QOL total. The effect of patient

distress on QOL total was similar across the Chinese-speaking and Anglophone groups (β = -.79, p <

.001).

Model 1b. In model 1b, the variables hypothesized to predict patient physical well-being

included patient distress, family caregiver distress and cancer stage. The explained variance was greatest

in the Anglophone group (R2 between .48 and .59, adjusted R2 between .39 and .51, p < .001). There was

insufficient evidence to conclude that having Stage I or Stage III cancer, versus having Stage II cancer,

was directly associated with patient physical well-being across all groups. Patient distress was

negatively related to physical well-being, though the effect was smaller in Chinese-speaking group than

in Anglophone group (β = -.46 and -.76, p = .01 and < .001, respectively).

Model 1c. In Model 1c, the hypothesized predictors of patient social well-being were patient

distress, family caregiver distress, patient age and patient education. The explained variance was greatest

in the Chinese-speaking group (R2 between .44 and .58, adjusted R2 between .32 and .49, p < .001).

There was insufficient evidence to conclude that patient age was directly associated with patient social

well-being. In the Chinese-speaking group, patient high school education was found to be negatively

associated with patient social well-being, where social well-being of patients was lower among those

with high school education, compared with those having post-secondary education (β = -.46, p = .03).

68
The effect of patient distress on social well-being was observed to be larger in the Chinese-speaking

group than in the Anglophone group (β = -.63 and -.45, p = .001 and .02, respectively).

Model 1d. In Model 1d, the hypothesized predictors of patient emotional well-being were patient

distress, family caregiver distress, patient age and years patient has lived in Canada. Model 1d had the

greatest explained variance in the Anglophone group (R2 between .72 and .77, adjusted R2 between .67

and .74, p < .001). Patient age was positively related with emotional well-being in the combined sample

(β = .30, p = .008). However, there was insufficient evidence to conclude that the variable “years patient

has lived in Canada” was associated with patient emotional well-being in the study sample. Patient

distress was negatively related to emotional well-being and the magnitudes of the effects were similar

for both the Chinese-speaking and Anglophone group (β = -.66 and -.65, respectively, p < .001).

Model 1e. In Model 1e, patient distress and family caregiver distress were hypothesized to

predict patient functional well-being. Model 1e had the greatest explained variance in the Chinese-

speaking group (R2 between .37 and .62, adjusted R2 between .32 and .59, p < .01). Consistent with

the results of all other regression models, patient distress remained a significant predictor of patient

QOL. The effect of patient distress on functional well-being was found to be larger in Chinese-speaking

group than in the Anglophone group (β = -.69 and -.59, respectively, p < 0.001).

Summary of multiple regression analyses of direct effects:

In summary, the greatest explained variance was achieved for Model 1a, where QOL total was

regressed on patient distress, caregiver distress and patient age. Among the covariates identified in the

study, direct association was found between patients with high school education and patient social well-

being in the Chinese-speaking group; the social well-being of patients was lower among those with high

school education, compared with those having post-secondary education. Patient age was also found to

be directly associated with patient emotional well-being in the combined sample, where older patients

69
were found to have higher emotional well-being. However, patient age was not found to be significant in

the Chinese-speaking nor the Anglophone group in the multiple regression analyses. There was also

insufficient evidence to conclude that other covariates (illness-related, social/family and family

caregiver factors) were directly associated with QOL total and with the subscales of QOL.

From the regression results, variation in the negative effects of patient distress on QOL subscales

was observed across the models. In the Chinese-speaking group, the negative effect of patient distress on

physical well-being was the smallest relative to other QOL subscales. On the other hand, the effect of

patient distress on functional well-being was the largest; as such, highlighting the role of patient distress

in the functional well-being of the Chinese-speaking participants. In the Anglophone group, the negative

effect of patient distress on social well-being was the smallest among the QOL subscales. Conversely,

the effect of patient distress on physical well-being was noted to be the largest, compared to other QOL

subscales, hence, highlighting the role of patient distress in patient physical well-being of the

Anglophone participants.

70
4.1.3.2 Indirect effects of patient, illness-related, social/family and family caregiver factors on

patient QOL through patient and family caregiver distress

Hypotheses 2 and 3 were tested by examining the indirect effects of factors of patient, illness-

related, social/family and family caregiver on patient QOL, as mediated by patient and family caregiver

distress.

Main hypothesis 2:

Patient factors (age, sex, education, migration duration, English fluency), illness-related factors

(cancer site/stage, treatment type), social/family factors (caregiving duration, patient-family

caregiver relationship), family caregiver factors (age, sex, education, migration duration,

English fluency) are also directly associated with patient distress and with family caregiver

distress.

Based on the bivariate analyses, only patient age and family caregiver age were found to be

significantly related to patient distress; none of the patient, illness-related, social/family and family

caregiver variables were significantly related with family caregiver distress. To assess the direct effects

of patient age and family caregiver age on patient distress, multiple linear regression was performed in

the combined sample (Chinese-speaking and Anglophone groups), the Chinese-speaking, and the

Anglophone groups. The regression model and associated hypotheses tested under Main Hypothesis 2

are:

Model 2:

Patient distress = b0 + b1Patient age + b2Caregiver age + e

H0 : b1 = 0; H0 : b2 = 0

H1 : b1 ≠ 0; H1 : b2 ≠ 0

71
 Regression results pertaining to Main Hypothesis 2 are presented in Table 7. From the regression

results of patient distress on patient age and family caregiver age in the combined sample, patient age

was significantly related to patient distress (β = -.3, p = .05), where older patients reported lower levels

of distress. However, family caregiver age was not significantly related with patient distress. When the

hypotheses were tested in the Chinese-speaking group and again in the Anglophone group, no

statistically significant results were observed.

Table 7: Main Hypothesis 2: Summary of multiple linear regression results

Model: Dependent variable Combined Sample Chinese Group Anglophone

Independent variables (n = 57) (n = 29) Group
(n = 28)
B β B β B β
Model: Patient distress
Patient age -0.12+ -.30* -0.05 -.13 -0.13 -.34
Caregiver age -0.02 -.11 -0.03 -.14 -0.06 -.30
Note. B = unstandardized regression coefficients. β = standardized regression coefficients. *p < .05, p =.05
+

Main Hypothesis 3:

Patient distress and family caregiver distress are directly related to patient QOL; and thus,

mediate the associations between patient QOL and the factors of patient, illness-related,

social/family and family caregiver.

From the earlier analyses on the direct association between the factors, including the distress

variables, and patient QOL, patient distress was found to be directly related to patient QOL total and the

subscales of QOL. Further, patient age was also directly associated with patient distress. Given these

results, it is possible that the effect of patient age on patient QOL is mediated by patient distress. From

the bivariate analyses, patient age was significantly related only to QOL total, social well-being and

emotional well-being; patient age was not found to be related with physical well-being or with

functional well-being. Family caregiver distress was not found to be associated with any of the

dependent variables in the study.

72
 Given the conceptual significance of family caregiver distress in the study framework, the

caregiver distress variable was entered in the regressions tested under Main Hypothesis 3, when

assessing the mediation effect of patient distress on patient QOL total, social well-being and emotional

well-being. The selections of covariates in the respective model tested under Main Hypothesis 3 were

congruent with the regression models identified under Main Hypothesis 1.

Main Hypothesis 3: Regression models and associated hypotheses

Regression Models Mediation hypotheses

Model 3a
i) Patient distress = b0 + bi1Patient age + bi2Caregiver distress + e H0 : bi1 = 0
H1 : bi1 ≠ 0

ii) QOL total = b0 + bii1Patient distress + bii2Patient age + H0 : bii1 = 0

bii3Caregiver distress + e H1 : bii1 ≠ 0

Model 3b:
i) Patient distress = b0 + bi1Patient age + bi2patient with high school H0 : bi1 = 0
education + bi3Patient with university/advanced H1 : bi1 ≠ 0
degree + bi4Caregiver distress + e

ii) Social well-being = b0 + bii1Patient distress + bii2Patient age + H0 : bii1= 0

bii3Patient with high school education + H1 : bii1 ≠ 0
bii4Patient with university/advanced degree +
bii5Caregiver distress + e

Model 3c:
i) Patient distress = b0 + bi1Patient age + bi2Years patient lived in H0 : bi1 = 0
Canada + bi3Caregiver distress + e H1 : bi1 ≠ 0

ii) Emotional well-being = b0 + bii1Patient distress + bii2Patient age + H0 : bii1= 0

bii3Years patient lived in Canada + H1 : bii1 ≠ 0
bii4Caregiver distress + e
Note. b0 = constant; b = unstandardized regression coefficients; e = residual. Subscript “i” referred to the model where patient
distress was the dependent variable. Subscript “ii” referred to the model where QOL (and subscales) was the dependent
variable.

73
 Model 3a: Indirect effects of patient age on QOL total through patient distress: From the simple

regression that assessed the effect of patient age on QOL total, patient age was positively related to QOL

total in the combined sample and the Anglophone group (β = .3 and .43, p = .03 and .02, respectively).

However, the effect of patient age was not significant in the Chinese-speaking group. When patient

distress was regressed on patient age and caregiver distress, patient age was found to be negatively

related to patient distress in both the combined sample and Anglophone group (β = -.34 and -.50, p = .02

and .007, respectively). In the multiple linear regression of QOL total, patient age was no longer

significant in the combined sample and in the Anglophone group. On the other hand, patient distress

remained negatively related to QOL total in all groups (β = -.79, p < .001).

The indirect effects for the combined sample and for the Anglophone group were .27 (-.34 x -

.79) and .40 (-.50 x -.79), respectively. Joint test of significance (Fritz & MacKinnon, 2007) suggested

the indirect effects were significant (p < .05), in the combined sample and Anglophone group. The

percentages of mediation for the combined sample and Anglophone group were 90% (.27/.30) and 93%

(.40/.43), respectively. Using Kenny’s recommendation on assessing indirect effects, with over 80% of

mediation found in the combined sample and Anglophone group, it may be said that patient distress has

completely mediated the positive effect of patient age on QOL total in the Anglophone group and the

combined sample, where the effect of patient age on patient QOL total was through patient distress.

While patient age was found to be a significant factor influencing patient QOL in the study, its effect

may be completely explained by the presence of patient distress. Results of the mediation analyses

relating to the indirect effects of patient age on QOL total through patient distress (Model 3a) are

presented in the path diagrams as follows.

74
Figure 3: Model 3a - Indirect effects of patient age on QOL total through patient distress, combined
sample

Patient age
.03
-0.34*
Patient
distress QOL total
-.79**

.04
Caregiver -.03
distress

*p < .05, **p < .01

Figure 4: Model 3a - Indirect effects of patient age on QOL total through patient distress, Anglophone
group
Patient age
.01
-.50*
Patient -.79** QOL total
distress

-.07

Caregiver -.02
distress

*p < .05, **p < .01

Model 3b: Indirect effects of patient age on social well-being through patient distress: In the

simple regression of social well-being on patient age, patient age was found to be significantly related to

social well-being in the combined sample (β = .32, p = .02), where patient age was positively related to

patient social well-being. The variables were not found to be significantly related in the Chinese-

speaking and Anglophone groups. When patient distress was regressed on patient age, caregiver distress

and the covariate associated with social well-being in the combined sample, patient age was found to be

75
negatively related to patient distress (β = -.33, p = .03). In the multiple regression of social well-being,

patient distress was negatively related to social well-being in the combined group (β = -.49, p < .001).

Patient age was, however, no longer significantly related to social well-being.

The indirect effect was .16 (-.33 x -.49); joint test of significance (Fritz & MacKinnon, 2007)

suggested the indirect effect was significant. With 50% (.16/.32) of total effects explained by mediated

effects, we may say that patient distress partially mediated the positive effect of patient age on social

well-being in the combined sample. Results of the mediation analyses relating to the indirect effects of

patient age on social well-being through patient distress (Model 3b) are presented in the path diagrams

as follows.

Figure 5: Model 3b - Indirect effects of patient age on social well-being through patient distress,
combined sample

Patient age
.09
-.33*
Caregiver -.12
distress .05
Patient -.49** Social
Patient with distress well-being
.01
high school
education -.31*
.05
Patient with -.09
university
or advanced
degree

*p < .05, **p < .01

Model 3c: Indirect effects of patient age on emotional well-being through patient distress: Based

on the simple regression, patient age was found to be positively related to patient emotional well-being

in the combined sample and in the Anglophone group (β = .45 and .59, respectively, p = .001). However,

no significant results were obtained in the Chinese-speaking group. When patient distress was regressed

76
on patient age, caregiver distress and the covariate associated with emotional well-being in the

combined sample, patient age was found to be negatively related to patient distress (β = -.36, p = .04).

Patient age was, however, not significantly related with patient distress in the Anglophone group. In the

multiple regression of emotional well-being, both patient distress and patient age were significantly

related with emotional well-being in the combined sample (β = -.68 and .30, p < .001 and .007,

respectively). Patient age was not significantly related to emotional well-being in the Anglophone group.

The indirect effect in the combined sample and Anglophone group were .24 (-.36 x -.68) and .33

(-.51 x -.65), respectively. Joint test of significance suggested the indirect effect in the combined sample

was statistically significant (p < .05). Approximately 53% (.24/.45) of the total effect of patient age was

mediated by patient distress in the combined group, where it may be said that patient distress partially

mediated the positive effect of patient age on patient emotional well-being. In addition to the direct

effect of patient age on patient emotional well-being, the effect of patient age may also be explained by

the presence of patient distress, where part of the effects of patient age on emotional well-being can be

attributed to the patient’s level of distress. Results of the mediation analyses relating to the indirect

effects of patient age on emotional well-being through patient distress (Model 3c) are presented in the

path diagrams as follows in Figures 6 and 7.

77
Figure 6: Model 3c - Indirect effects of patient age on emotional well-being through patient distress,
combined sample

Patient age
.30**
-.36*
Caregiver .02
distress Emotional
.04 Patient -.68** well-being
distress
Years .04
patient lived
in Canada -.19

*p < .05, **p < .01

Figure 7: Model 3c - Indirect effects of patient age on emotional well-being through patient distress,
Anglophone group

Patient age
.07
-.51
Caregiver .02
distress Emotional
-.06 Patient -.65**
well-being
Years distress
patient lived .02
in Canada .47

*p < .05, **p < .01

Summary of mediation analyses:

The role of patient distress in explaining patient QOL was revealed in the assessment of indirect

effects of patient age on patient QOL total and on the QOL subscales in the combined sample and

Anglophone group. The effects of patient age on patient QOL total appeared to be completely mediated

by patient distress. Examining the mediation effects in the QOL subscales, the effects of patient age on

patient social well-being and on patient emotional well-being were partially mediated by patient distress

78
in the combined sample. No mediated effects of patient age on the QOL subscales were detected in the

sub-group analyses of Chinese-speaking and Anglophone patients.

4.1.4 Post hoc analyses

The analyses were repeated using the sample of 38 dyads with complete information. These

results were compared with those from the full study sample (38 dyads, 17 patients without family

caregiver participation, and two family caregivers without patient participation) where multiple

imputation (MI) was conducted, in order to determine the extent to which conclusions may have differed

when different approaches in handling missing data were used. A summary of the bivariate results is

presented in Table 8.

Consistent with the results from the analyses of the full sample involving MI, patient distress was

significantly related to patient quality of life total scores and all the QOL subscales (physical, social,

emotional, and functional well-being). Results of bivariate analyses on family caregiver distress were

comparable to those obtained when using the full sample. Results from the sample of 38 dyads revealed

that patient age was significantly related to QOL total, as well as to social and emotional well-being.

Similar to the bivariate analyses results of the full sample, patient age was also significantly related to

patient distress. There was a significant association between patient level of education and social well-

being, where social well-being was lower among those patients with high school education, compared to

those with post-secondary education. From the smaller sample of 38 dyads, there were also other

significant associations not found in the full sample. Years the patient had lived in Canada was

negatively related to family caregiver distress. The factor relating to family caregiver with advanced

English variable was negatively related to patient physical well-being. Similar to the results of the full

sample, the bivariate associations relating to family caregivers were not significant.

79
Table 8: Summary of bivariate associations (correlations and regression coefficients) with QOL total
and QOL subscales (n = 38)

Variables Patient Caregiver Patient Patient Patient with Caregiver Years

distress a distress a age a with high university or with advanced patient
school advanced English lived in
education degree (vs beginner Canada a
(vs post (vs post or
secondary secondary intermediate
education)b education)b English)c
QOL total -.84** -.13 .39* -.24 -.14 -.22 .04
Physical -.71** .01 .24 -.30 -.12 -.34* -.10
well-being
Social -.60** -.15 .32* -.42* -.21 .03 .24
well-being
Emotional -.76** -.10 .51** -.03 -.20 -.28 .01
well-being
Functional -.72** -.19 .24 -.12 .05 -.11 .02
well-being
Patient distress - .14 -.39* .26 .22 .12 -.14
Caregiver .14 - -.23 .09 -.02 -.02 -.34*
distress
Note. a = Pearson correlations. b = standardized regression coefficients of dummy variables for education level.
c
= standardized regression coefficient of binary variable for English fluency.
* p < .05, **p < .01.

Multiple linear regression was performed on the sample of 38 dyads, to test Main Hypothesis 1

investigating the association between patient, illness-related, social/family and family caregiver factors,

and patient QOL. Additional regressions were run for regression models related to physical well-being

and emotional well-being, as informed by the bivariate analyses results of n = 38. Additional regressions

conducted were:

i) Physical well-being = b0 + b1Patient distress + b2Caregier distress +

b3Caregiver with advanced English + e

ii) Emotional well-being = b0 + b1Patient distress + b2Caregiver distress + b3Patient age + e

Results of the regressions on Main Hypothesis 1 when using the sample of 38 dyads were

consistent with the findings on the full sample, except that the factor regarding educational level was no

longer found related to patient social well-being in the smaller sample. From the results of the additional
80
regression for physical well-being, the factor relating to family caregiver with advanced English

remained significant in predicting patient physical well-being. The results of the multiple linear

regression are presented in Table 9, which follows a brief discussion.

As noted above on the bivariate results using the sample of 38 dyads, only patient age was

significantly related with patient distress. Although the factor relating to years patient has lived in

Canada was significantly associated with family caregiver distress, the caregiver distress variable was

not associated with the dependent variables (QOL total and subscales). It followed that results of the

testing of Main Hypothesis 2, regarding the associations for each of the patient/illness/social/family

caregiver factors in relation to the distress variables, was essentially the bivariate results of the direct

effects of patient age on patient distress.

To test Main Hypothesis 3 on the indirect effects of the factors of patient, illness-related,

social/family and family caregivers on QOL, three regression models were run. The selection of

variables in the models was informed by the results of Hypothesis 1, where the associations among

patient age, patient distress and patient QOL were assessed. Since family caregiver distress was not

found to be associated with QOL total and its subscales, family caregiver distress was not tested for its

mediation role in the study. The three regression models conducted involved the dependent variables

(QOL total, social well-being and emotional well-being) and their respective associations with patient

age, controlling for the distress variables as well as the factors found to be associated with the dependent

variables. The conclusions on the mediated effects of patient age through patient distress on QOL in the

post hoc analyses were similar to those from the full sample. The effects of patient age on QOL total

were completely mediated by patient distress, while the effects of patient age on patient social well-

being and emotional well-being were partially mediated by patient distress.

81
Table 9: Main Hypothesis 1: Summary of multiple linear regression results (n=38)

Models: Dependent variable Combined Sample (n=38)

Independent variables B β
Model 1a: QOL total
Patient distress -2.99** -0.81**
Caregiver distress 0.02 0.004
Patient age 0.11 0.08
R2 (.71)**
Adjusted R2 (.69)**
Model 1b:Physical well-being
Patient distress -0.81** -0.64**
Caregiver distress 0.16 0.09
Stage I cancer 1.57 0.12
Stage III cancer 1.09 0.10
R2 (.53)**
Adjusted R2 (.47)**
nd
2 Physical well-being regression: Physical well-being
Patient distress -0.796** -0.696**
Caregiver distress 0.165 0.098
Caregiver with advanced English -3.522* -0.253*
R2 (.58)**
Adjusted R2 (.54)**
Model 1c: Social well-being
Patient distress -0.47** -0.51**
Caregiver distress -0.04 -0.03
Patient age 0.04 0.10
Patient with high school education -2.57 -0.27
Patient with university or advanced degree -0.73 -0.07
R2 (.43)**
Adjusted R2 (.34)**
Model 1d: Emotional well-being
Patient distress -0.76** -0.65**
Caregiver distress -0.03 -0.01
Patient age 0.18** 0.37**
Years patient lived in Canada -0.07* -0.26*
R2 (.67)**
Adjusted R2 (.63)**
2nd Emotional well-being regression: Emotional well-being
Patient distress -0.78** -0.661**
Caregiver distress 0.088 0.051
Patient age 0.126* 0.258*
R2 (.62)**
Adjusted R2 (.59)**
Model 1e: Functional well-being
Patient distress -0.83** -0.71**
Caregiver distress -0.16 -0.09
R2 (.53)**
Adjusted R2 (.50)**
* p < .05, **p < .01

82
4.1.5 Summary of quantitative analyses

Results of post-hoc analyses using the sample of 38 dyads were consistent with the key findings

from the full sample of n = 57, where multiple imputation was conducted. The results highlighted the

positive association between patient age and QOL total, as well as social well-being and emotional well-

being of patients. Further, patient age was also negatively related to patient distress, where older patients

reported lower distress. The family caregiver distress variable remained statistically insignificant, in

relation to QOL total and subscales, and to patient distress. While the effects of patient age on QOL total

were completely mediated by patient distress, the effects of patient age on social well-being and

emotional well-being were partially mediated by patient distress.

Patient and family caregiver distress

In the current study, patient distress has emerged as the key factor that influences patient QOL,

where greater distress reduces patient QOL. Family caregiver distress was not significantly related to

patient QOL total nor to any the subscales of QOL. Notably, patient distress impacts QOL differently

across the domains of QOL: physical, social emotional, and functional well-being. Comparing across the

four subscales of QOL, patient distress appeared to have the greatest impact on Chinese-speaking patient

functional well-being. In the Anglophone group, the effect of patient distress on patient physical well-

being was the largest among the QOL subscales. In both the Chinese-speaking and Anglophone groups,

patient distress seemed to have the least impact on patient social well-being.

Patients, illness-related, social/family, family caregiver factors

When examining the direct effects of the factors on QOL total and QOL subscales, results from

the multiple regression analyses suggested that patient age was a significant predictor of patient

emotional well-being in the combined sample, such that older patients reported higher emotional well-

being. Patient age was also a significant predictor of patient social well-being in the combined sample,

83
although the association was not significant in the individual Chinese-speaking and the Anglophone

groups. Similarly, direct effect of patient level of education on patient social well-being was found, with

the social well-being of participants in the Chinese-speaking group lower among those with high school

education, compared with those having post-secondary education. However, education did not appear to

predict social well-being in Anglophone patients. The difference observed across groups highlighted the

role of patient education among the Chinese-speaking participants, as it related to their social well-

being.

The effects of patient age on patient QOL were mediated by patient distress, where the

magnitude of this mediation differed across subscales of QOL. The effects of patient age on QOL total

could be completely explained by the presence of patient distress, while the effects of patient age on

patient social well-being and on patient emotional well-being were only partially explained by patient

distress. No mediation effects of patient age on the QOL subscales were detected in the sub-group

analyses. The mediated effects, found in the combined sample, highlighted the role of patient distress in

predicting patient QOL, and more specifically, the social and emotional well-being of the patients.

84
4.2 Qualitative analysis

4.2.1 Description of interview sample

Of the 46 Chinese-speaking survey participants, ten patients and six family caregivers were

interviewed, including five patient-family caregiver dyads. While there were more female than male

patients (10 vs. 6) among the interviewees, there was an equal number of female and male family

caregiver interviewees. The patients were largely immigrants from Hong Kong (7) who were 50 years or

older. Similarly, most family caregivers were also born in Hong Kong (5), although they were younger

than 50 years old. Seven of the patients were diagnosed with Stage III cancer. Three patients were

diagnosed with breast cancer; other cancer sites represented in the interview sample included:

colon/colorectal (2), lung (1), nasopharyngeal (1), ovarian (2) and prostate (1). The family caregivers

interviewed included spouses, children and relatives of the patient; four had provided care to the patient

for less than one year at the time of the interview. The demographic characteristics of the interviewees

are summarized in Table 10 (which follows in the midst of this discussion). The corresponding number

associated with each patient and family caregiver ID represented dyads in the interviews.

For most of the patients interviewed, their cancer diagnosis was not an acute incident that

constituted a medical crisis. Rather, the diagnosis of cancer spanned from a few months to one year,

involving a series of tests and consultations with family doctors and specialists. With one exception, the

patients interviewed in the study were diagnosed with cancer for the first time. In most instances, the

news of the cancer diagnosis was given by a family doctor, many of whom were Chinese-speaking. The

patients were fully aware that they had cancer, having received the news of the diagnosis from their

doctors. The family caregivers were also informed of the diagnosis, and some were present with the

patients during the medical consultation.

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 Cross-cutting themes relating to patient distress, family caregiver distress and patient quality of

life that emerged from the interviews are presented in the following section. Excerpts of the interviews

and key phrases are used to illustrate the themes relevant to the study focus, namely, patient and family

caregiver relationship and quality of life. Perspectives of the patients and their family caregivers are

presented. Dyadic responses in relation to the emerging themes are provided, in cases where both the

patient and his/her family caregiver participated in the interviews.

Table 10: Characteristics of interview participants

ID Chinese Patients (CP) ID Chinese Caregivers (CC)

CP1 Female in 50s; migrated from Hong Kong CC1 Male in 20s; migrated from Hong Kong
18 years ago; has university degree; 18 years ago; has post-secondary
diagnosed with Stage III nasopharyngeal education; provided care to patient
cancer; 1 adult child (mother) for 11 months

CP2 Female in 60s; migrated from Hong Kong CC2 Female in 60s; migrated from Hong
25 years ago; has high school education; Kong 25 years ago; has master’s degree;
diagnosed with Stage III ovarian cancer; provided care to patient (sister-in-law)
3 adult children since the first diagnosis of breast cancer
7 years ago

CP4 Male in 50s; migrated from Hong Kong 19 CC4 Female in 40s; migrated from Hong
years ago; has high school education; Kong 16 years ago; has post-secondary
diagnosed with Stage III prostate cancer; education; provided care for patient
no children (husband) for 12 months.

CP5 Female in 60s; migrated from China 41 --

years ago; has master’s degree; diagnosed
with Stage III ovarian cancer; 2 adult
children

CP6 Male in 60s; migrated from Hong Kong 40 --

years ago; has university degree;
diagnosed with Stage III lung cancer;
4 adult children

CP7 Female in 60s; migrated from China 19 --

years ago; has university degree;
diagnosed with Stage I or II breast cancer;
1 adult child.

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ID Chinese Patients (CP) ID Chinese Caregivers (CC)

CP9 Male in 60s; migrated from Hong Kong 15 --

years ago; has high school education;
diagnosed with stage III colorectal cancer;
1 adult child

-- CC10 Male in 30s; migrated from Hong Kong

19 years ago; has university degree;
provided care for patient (mother) for 9
months.

CP15 Female in 40s; migrated from Hong Kong CC15 Male in 40s; migrated from Hong Kong
8 years ago; has high school education; 8 years ago; has master’s degree;
diagnosed with Stage I or II breast cancer; provided care for patient (wife) for 7
2 young children months.

CP18 Female in 50s; migrated from Hong Kong CC18 Female in 20s; born and raised in
39 years ago; has post-secondary Canada; has university degree; provided
education; diagnosed with Stage III colon care for patient (mother) for 10 months.
cancer; 3 adult children

CP21 Female in 50s; migrated from Taiwan 18 --

years ago; has university degree;
diagnosed with Stage I breast cancer;
2 adult children.

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4.2.2 Cultural understanding of cancer and disclosure of diagnosis

Patients and family caregivers observed that there were misconceptions about cancer held among

Chinese people. The lack of understanding of the disease also contributed to tensions in disclosing the

diagnosis in the family and in the community. At the same time, patients and family caregivers

recognized the informational and emotional support gained, especially from cancer survivors, when the

cancer diagnosis was disclosed to selected individuals.

4.2.2.1 Misconceptions about cancer

In response to a question on the understanding of cancer in the Chinese community and in the

broader Canadian society, some patients and family caregivers juxtaposed ‘Chinese’ and ‘Canadian’

experiences of cancer, although a few family caregivers said they had not observed differences between

the Chinese community and Canadian society more broadly in their understanding of cancer. One

female patient (CP2) who had volunteered in the Cancer Centre and participated in an international

conference on cancer, described Canadian society as “more open” and “not discriminatory” towards

people with cancer or with special needs. She further commented that Chinese people tended to be less

willing to be involved in affairs that were deemed to have little impact on their personal lives: “I feel

Chinese are less concerned with other Chinese, not just other Chinese but other matters in

general…maybe to avoid trouble (maa faan).” She added that the beliefs of Chinese immigrants

changed as they were integrated into Canadian society. Elaborating on the openness in talking about

cancer in the Canadian society, her family caregiver (CC2) commented: “They (Canadians) would deal

with it as a matter of fact.” The family caregiver continued that the misconception of cancer often arose

from overwhelming hearsay circulated in the Chinese community about the disease, although she

believed that the level of education influenced one’s understanding of cancer. Commenting on the

challenges that Chinese patients and families encountered, a male patient (CP6) concurred that Chinese

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were generally “afraid of trouble” (paa si), and he reported a Chinese cancer survivor friend’s passive

interaction with the healthcare providers while receiving care. He reasoned that the hesitance to engage

and converse, coupled with the language barrier, inhibited the ability to cope with the illness.

Repeatedly, patients and family caregivers cited language barriers as the key challenge in

communicating with the healthcare providers. They further said that the lack of language skills to

understand the medical team during consultation prohibited patients and families from asking

appropriate questions regarding treatment. One female family caregiver (CC4), who had used

interpreters during the medical consultation about her husband’s treatment for prostate cancer, said that

the lack of English skill was particularly challenging when seeking to understand medical terminology.

During their respective interviews, the caregiver and her husband (both of whom assessed themselves to

have intermediate English fluency) reported an incident when they found the interpreter to be providing

inaccurate translation. The patient and family caregiver concurred that the incident caused much

emotional distress to the patient, and they found that the attitude of the translator and the quality of the

translation worried them. One female patient (CP15) observed that there was limited cancer-related

information in the Chinese language that was specific to the Canadian healthcare context, and that the

Chinese-speaking community had to rely on information that originated from other Asian countries,

such as Hong Kong. Patients further emphasized that limitations in English skill inhibited their access to

knowledge about cancer; fewer language appropriate resources on cancer care in turn heightened their

fear and anxiety surrounding a cancer diagnosis.

Participants were largely in agreement that there has been increasing understanding and

acceptance of cancer among the Chinese population, even though the notion of cancer as a death

sentence was still held by some in the community. Patients and family caregivers noted that the

association of cancer with being terminal and with death in the Chinese community often led to

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significant fear and anxiety following a cancer diagnosis. Speaking about understandings of cancer in

the Chinese community, one male patient (CP4) commented: “Cancer is very horrific, a lot of people

feel that you have contracted terminal illness…ever since I have the illness, I have been in contact with

support group and have more information about it. Actually, it can be cured. Then, I start feeling less

fearful.” In comparison, patients and family caregivers observed that there appeared to be more

understanding about cancer as a chronic illness in the broader Canadian society. Speaking of her initial

fear and subsequent understanding of cancer, a female patient (CP15) said: “With breast cancer, to the

Chinese, you do not want to let people know. Like, it’s very, hmm, it’s not so good. To the Chinese,

there will be this feeling. Like me, earlier on, I also have this feeling. But I have overcome it. I will tell

people, if it’s breast cancer, then it’s breast cancer (so be it).” She further said that since reading more

about cancer, she had realized that the disease is regarded as a chronic illness, adding that this was very

important and supportive information to her. In a separate interview with her husband (CC15), he

concurred with the view that fear and the assumption that a diagnosis is a death sentence were common

reactions in the Chinese community. He added that most Chinese people do not generally look up

information to learn more about cancer, and are therefore “overly nervous” because of uncertainty and

their lack of knowledge about the disease. A female patient (CP5) noted that older Chinese-speaking

patients with less education may be more isolated, particularly when they were less connected with their

English-speaking children who were raised in Canada.

Some of the patients and family caregivers also observed that Chinese people were more

reluctant to talk about the disease, and that Canadians may have less extreme reactions to the disease

than the Chinese patients and families who viewed cancer as terminal. One female patient (CP21) said

her friends had advised her not to tell others that she has breast cancer, for fear that she might be

“looked down on” (belittled) and labelled as “damaged goods.” Another female patient (CP7)

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commented that some of her Chinese friends referred to cancer as “that thing,” to avoid talking about the

disease. She recalled a Chinese friend advising her “not to share food” in case of infecting others; yet

another friend said to the patient it was “embarrassing” to talk about her diagnosis of breast cancer. The

patient said that she was “surprised” by her friend’s comments, adding that she felt “awkward” and was

hesitant to disclose her cancer site, especially among males in her social network. A male patient (CP6)

also said that he had to explain to his friends that his illness was not contagious, and to calm their

anxiety when they learned of his cancer diagnosis, although he noted that some friends visited him less

frequently since he had disclosed his diagnosis. This patient further said that “there is no point talking”

about his cancer, if the talking did not help him in his situation.

4.2.2.2 Tensions in disclosure

Patients also spoke of disclosing information about the illness selectively and with discretion, in

order to manage the illness and to regain a sense of control following the cancer diagnosis. They

explained that the energy spent in attending to undue questioning about their diagnosis from others

aggravated their distress. Further, several patients highlighted the importance of disclosing only when

they had more clarity about their illness, so as to avoid creating anxiety for the more vulnerable

members in the family. These family members included elderly parents, loved ones with pre-existing

health concerns and younger children in the family. A female patient (CP5) said she did not want to

disclose her cancer diagnosis to her elderly mother (in her 90s) who was living with her, until she had

more information about her treatment plan, adding that she noted others were more reactionary to the

news of her cancer diagnosis than herself. Similarly, a male patient (CP9) said that his siblings agreed

with his decision not to tell their elderly mother about the cancer diagnosis. The patient also said he was

careful not to disclose his illness to his friends, for fear his mother would learn of his diagnosis through

his friends.

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 Male and female patients alike said they were concerned about the adverse impact of the news on

their loved ones, which, in turn, added to their distress. As a female patient (CP7) recalled the events

around disclosure of her diagnosis to her son and his family over the telephone, she broke down. When

she regained her composure, she said: “I don’t want to upset them,” by telling the family her diagnosis

of cancer. She further said that she knew that her son was “trying to stay cool,” while his wife was

“crying deeply, the moment she picked up the phone.” The patient reiterated: “That’s why I don’t want

to tell them.” In response to her family’s distress, another female patient (CP21) said she tried to

respond calmly when she was with her daughter, explaining that she did not want her daughter to be

worried, acknowledging that her daughter’s distress would in turn cause anxiety for her.

Family caregivers also spoke of disclosing only to selected individuals, to shield the patients

from further anxiety arising from overwhelming queries from concerned relatives and friends. At the

same time, some family caregivers described experiencing stress from the repeated queries of concerned

individuals. One female family caregiver (CC18) said that she did not reach out to tell other people

about her mother’s diagnosis of colon cancer, as she had observed the anxiety and helplessness others

felt at the news of the cancer diagnosis, and that their repeated questioning of her mother’s condition had

created much stress for the family. The family caregiver said that she got progressively more tired and

annoyed with people who gave unsolicited “invasive and insensitive advice on remedies for cancer,”

which she believed has made her mother more anxious, adding “I am annoyed because I want to protect

my mom.”

4.2.2.3 Support through disclosure

While there were tensions around disclosure of cancer diagnosis, patients and family caregivers

did selectively choose to disclose the diagnosis to non-family members for the purpose of rallying

support for the family in coping with the illness. Disclosure of the diagnosis to friends was largely at the

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discretion of the patients, with patients and their families choosing to disclose to individuals who could

provide support to them. Where patients sought to reach out to their friends for support through

disclosure, they noted that conversations with their friends helped them regain stability in their moods.

One male family caregiver (CC1) said that he left it to his mother to tell their relatives of her cancer

diagnosis, as per her preference. He, however, took the initiative to share the news with his friends who

were concerned for him. The family caregiver added that he felt supported, having heard the experience

of his friends whose parents were also diagnosed with cancer. Another male family caregiver (CC15)

said that he was selective about the friends he told about his wife’s diagnosis of breast cancer, where he

felt these individuals would be of support to his family. He added that his friends introduced him and his

wife to other cancer survivors, which he found to be most helpful. A male caregiver (CC10) also said

that he realised the prevalence of breast cancer and was assured that the disease is treatable, as he talked

to his friends about his mother’s illness. The caregiver in turn comforted his mother that “breast cancer

is not a big thing” and that it had “touched many lives,” while updating her of the relatives and friends

who were also living with cancer.

Some patients said that peer support from cancer survivors was particularly helpful, providing

information to prepare them psychologically and emotionally for cancer treatment. One female patient

(CP15) said that in the earlier period of her diagnosis, she constantly sought information over the

Internet about treatment and diet for cancer patients. She added that the information was overwhelming

and “too distressing.” She decided to stop seeking information online but rather consulted with friends

who were cancer survivors. The support from cancer survivors was regarded as beneficial by both male

and female patients, as well as by family caregivers. Some of the patients and family caregivers

highlighted that the connection with cancer survivors for mutual support helped to alleviate patients’

fear and sense of isolation. Speaking of the strong support she received from friends who were cancer

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survivors, a female patient (CP15) said that these friends helped to prepare her for what she could expect

throughout her illness trajectory, adding, “I’ll be lost without them.” Her husband (CC15) also

emphasized that support from cancer survivors was particularly helpful to his wife, commenting that

“they (cancer survivors) have experienced it and know it.”

Another male patient (CP4) said that hearing the positive outcomes of other cancer patients in

the support group he attended reduced his fear of cancer, as he gained greater confidence that his disease

could be cured. A female patient (CP2), who had attended English and Chinese-speaking cancer support

groups, said that it would be important for Chinese cancer patients to connect with other cancer patients,

learning “to walk the journey of cancer survivors and assume the new normal.” However, her family

caregiver (CC2) expressed concern that the sharing in the support groups might impact her sister-in-law

(patient) negatively, when the patient learned that her cancer may recur. Despite her concern, the

caregiver added that she believed her sister-in-law would want to know the nature of her illness and

could face the fact of possible cancer recurrence.

4.2.3 Distress and emotional regulation in the family

Patients and family caregivers spoke of their distress following the diagnosis of cancer, where

worry about one another was cited by both the ill person and care provider in the family. While coping

with their distress, patients and family caregivers also sought to regulate their emotion, with members of

the family seeking to downplay their distress in order to protect the patient from distress. At the same

time, patients also sought to conceal their distress from their family, particularly their children, to shield

them from distress.

4.2.3.1 Sources of patient distress

Among the patients interviewed, common reactions to cancer diagnosis were “disbelief,”

“confusion,” “shock,” “fear,” “depression” and “worry about (their) families,” particularly their children

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and elderly parents. Some patients said they were shocked with their diagnosis, adding that they had

been conscientious in maintaining a healthy lifestyle, and did not anticipate that they had cancer. Despite

the initial shock, patients spoke of their subsequent acceptance of their illness. In describing their

distress relating to cancer treatment, patients reiterated that the major side effects of cancer treatment

they encountered were: fatigue, pain, numbness, loss of taste and appetite (enjoyment of food). Some

female patients particularly emphasized the pain of cancer and side effects of treatment as “suffering”

(tung fu) that extended beyond physical distress, while other patients reported relatively less disruption

arising from the effects of cancer treatment. On adjusting to cancer treatment, patients spoke of

restricted mobility coupled with memory loss and reduced energy, as major changes they underwent.

In addition to living with the treatment side effects, patients spoke of their reduced independence

and increased reliance on others while undergoing cancer treatment. Male and female patients alike

mentioned their desire to be self-reliant and “not wanting to burden friends and family members” in

caring for them. As a female patient (CP18) spoke of her reliance on family and friends for rides to

medical appointments and help in dressing her wounds after surgery, she expressed her concern that she

had “troubled “ (imposed on) others. Her daughter, who provided care for her, also noted the tension the

patient experienced as a result of the ways her independence had been compromised following her

cancer treatment. The family caregiver (CC18) reported occasions when she found her mother crying

when she was unable to complete simple day-to-day tasks on her own, adding that her mother felt

“frustrated and overwhelmed.” The family caregiver further said: “It’s very hard on Mom. She’s always

very independent. She doesn’t want to bother other people and felt bad asking for help.”

Several female patients also commented on their constraints in caring for their children while

coping with their illness. Throughout the illness trajectory, patients expressed concern about the impact

of their illness on their children, including adult children. One female patient (CP2) said that “the cancer

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is not just about me,” as she spoke of feeling remorseful and worried about her daughter’s diagnosis of

ovarian cancer, and concern for her granddaughters, who were found to also carry the genotype related

to the patient’s cancer. She further explained that her concern for her family differed from the distress of

having cancer, even though she felt her children were very understanding and she did not feel blamed.

Her sister-in-law caring for her (CC2) also noted the patient’s distress about her family, commenting

that the patient felt responsible for her daughter’s cancer, but was comforted that her daughter’s cancer

was in remission.

4.2.3.2 Sources of family caregiver distress

In addition to shock and worry, female and male family caregivers alike reported strong

emotions of “fear,” “numbness,” “anger,” “sadness,” and “helplessness.” Among the family caregivers

interviewed, some commented that family members were more worried than the patients following the

cancer diagnosis. In response to the news of the cancer diagnosis, one female family caregiver (CC4)

caring for her husband diagnosed with prostate cancer said this of herself: “Very unhappy. I am more

unhappy than him (patient).” Later in the interview, she described her distress when a post-surgery acute

incident prompted the patient to be admitted to the emergency unit: “It was the most difficult…I felt

isolated (gu duk) and helpless (mou zo)…I have to face things alone,” as she spoke about being away

from her family in Hong Kong and that she and her husband did not have family support in Vancouver.

Another female family caregiver (CC18) observed that her father appeared to be more distressed than

her mother, who was diagnosed with colon cancer: “Dad was not eating…he looks more sick than

Mom.” She continued to describe her mother as “optimistic and strong,” and that the patient would

console and encourage friends and relatives who were distressed by her cancer diagnosis.

While the family sought to provide comfort to the patient, family caregivers said they recognized

their limitations in relieving the patient's distress from cancer treatment. In describing her concern for

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her sister-in-law’s diagnosis with ovarian cancer, one female family caregiver (CC2) spoke of her

helplessness in relieving the patient’s distress from chemotherapy, however much she wanted to help.

The family caregiver spoke of the side effects of the treatment on the patient, noting the impact to be

intense while describing her stance as “willing but unable to help” (oi mok nang zo). This sense of

helplessness in the family was also observed and highlighted by the patient herself (CP2), who

commented that she knew her family would not be able to bear her suffering, and she would need to

“clear her own hurdle” (gwo zi gei yi jat gwaan).

In addition to their sense of helplessness, most family interviewees – including men and women

– spoke of the physical and emotional weight of caregiving. One male caregiver (CC10) caring for his

mother said he had to coordinate the family’s schedule and spent time commuting between his home and

his parents’ home over the past year of caregiving; this resulted in little time with his wife and his

newborn child. Another male family caregiver (CC1), providing care to his mother diagnosed with

nasopharyngeal cancer, described his caregiving experience as “pretty tough, emotionally,” adding that

his mother needed much emotional support. Being the only child and the caregiver in the family, he

spoke of feeling lethargic and stressed over the year of caregiving. He also said that he has “cut off (his)

social life completely” and has “lost some friends,” while taking time off from work to care for his

mother. At the same time, the caregiver said he was caring for his ill father for close to half a year; in her

interview, his mother (CP1) disclosed that her former husband was hospitalized for relapse of bipolar

depression at the time of her diagnosis. The family caregiver said that the caregiving had had major

impact on him at a critical period of his life, and that he was “still recovering” from the loss of business

networking contacts and his productivity. The patient (CP1) also observed the distress in her son, adding

that she worried whether he could “get through the crisis” of coping with illness in the family. A female

family caregiver (CC18), caring for her mother diagnosed with colon cancer, concurred with the

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challenges in being the primary caregiver; she sought to balance caregiving and her career, staying home

to care for her mother while her father was away on business trips. Reflecting on the impact of

caregiving, the caregiver said: “It is hard, putting life on hold…but I feel guilty to even think that way.”

She added she had lost weight and had difficulty with her sleep, and others had noted her weariness.

Family caregivers’ anxiety for the patient’s recovery was also highlighted in the interviews. In

caring for the family members diagnosed with cancer, some family caregivers spoke of the distress of

the patient and the family caregiver that stemmed from their conflicting expectations regarding

treatment and self-care. A male family caregiver (CC1) caring for his mother diagnosed with

nasopharyngeal cancer characterised his mother as “pessimistic,” and also said, “She believes she would

die and did not believe in the treatment.” He added that she “has not taken care of herself” when she had

not followed his advice on managing her symptoms after chemotherapy, which subsequently resulted in

her admission to the emergency unit. When interviewed, the patient (CP1) said that her son (CC1) had

perceived her to be “negative” when she chose to do what was most comfortable for her and she had not

followed all his advice during treatment.

4.2.3.3 Emotional regulation between patient and family caregiver

Even as family caregivers in the study commented on their distress with their loved one’s

diagnosis of cancer, some sought to conceal their emotions from the patients. In response to her

mother’s diagnosis of colon cancer, a female family caregiver (CC18) said: “I almost didn’t know how

to respond…I would show my concern and anxiety to everyone else but her (mother).” The caregiver

further described herself to be “playing it up” and “trying to act” when she was with her mother. At the

same time, the family caregiver also described the times she had “broke down in uncontrollable crying”

when she was with her close friends, adding that she did not realise the “emotions that were bottling

inside” her. Speaking of the family’s reaction to her cancer diagnosis, the family caregiver’s mother

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(CP18), noted her daughter’s and other family members’ attempt to downplay their distress, in their

interaction with her. The patient observed that her family (husband, daughter, daughter’s fiancé) looked

startled when the doctor disclosed the news of her cancer diagnosis, but they did not show much

emotion in her presence, following the initial disclosure at the doctor’s office. The patient further

commented that she was aware that family members were attempting to put up a strong front in her

presence, when she observed that they were “overly calm” in response to her illness.

While family members sought to conceal their emotions from the patients, some patients also

spoke of hiding their distress when they were with family members. One male patient (CP6) said that

when his daughters visited him at the hospital, he “pretended” he had no pain, to assure and “cheer them

up.” He further said he did not reveal much of his negative emotions, so as not to affect others, adding “I

do not want others’ emotion to affect me,” and that “there is no point when everyone could not be

happy.” Rather, he said that he wanted to be treated “as normal a person as possible.” To alleviate

anxiety in the family, a female patient (CP15) said that she did not use the word “cancer” when speaking

with her 10-year old daughter, having observed her daughter’s distressing response to the side effects of

treatment on the patient. The patient also said that she always smiled in her daughter’s presence, seeking

to “console and cheer her up.”

4.2.4 Approaches to family caregiving and quality of life

Patients reiterated the pivotal role that their family caregivers played in giving them

informational, practical and emotional support. Notwithstanding the distress that patients and family

caregivers encountered following a cancer diagnosis, they agreed that there were positives of cancer in

the family that contributed to their quality of life. Patients spoke of personal growth while coping with

their illness, and family caregivers also noted similar growth in themselves through the caregiving

experience.

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4.2.4.1 The “right” family support

All patients interviewed spoke of the concern their families displayed towards their diagnosis

and the support they rendered to uphold the patient’s quality of life. Female patients, in particular,

reiterated the pivotal role that their family played in supporting them throughout the cancer trajectory.

The support that patients described included informational, practical and emotional help from their

family caregivers. One female patient (CP18) spoke of the informational support from her daughter

(family caregiver), who was a dietitian: “She (daughter) understood the patient’s needs, and did not

overwhelm me with too much care.” The patient added that her daughter’s knowledge of drugs and

ability to answer her questions had been especially helpful, providing her with appropriate care. In

describing the practical and emotional support she received from her sister-in-law caring for her during

her illness, a female patient (CP7) said: “I was taken by surprise with her (sister-in-law) openness to

help without thinking twice…her sincerity and willingness to make herself available to help gave me

much comfort.” The patient said her sister-in-law had given her the “right support and help,” not

overwhelming her with questions but referring her to other cancer survivors to provide advice on

managing the disease. The patient said she was particularly appreciative of her sister-in-law's attitude of

“not digging into too much (information)” but respecting her and giving her space.

Often, family members accompanied patients to medical appointments. These family members

included spouses, children and sisters-in-laws, most of whom were deemed proficient in English and

could facilitate patient communication with healthcare professionals. In addition to accompanying

patients to appointments, the practical help that patients highlighted also involved preparing soup/food

according to their dietary needs, running errands, and attending to patients’ personal care (like dressing,

especially after surgery). Although patients often cited practical help when describing the support they

received following their cancer diagnosis, some female patients also highlighted the role that emotional

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support played in their coping. In describing her sister-in-law's caregiving, one female patient (CP2)

commented, “she (sister-in-law) understands,” and explained the importance of being understood

without being burdened with excessive questions, particularly in relation to her pain after cancer

treatment. The patient said that her sister-in-law's approach to caregiving had in turn strengthened her

ability to cope with the distress of the side effects of treatment. Her family caregiver (CC2) also

described the intensity of the side effects from chemotherapy that she witnessed in the patient, adding

that she felt helpless and sought to provide practical help to relieve the patient’s distress. The family

caregiver observed that when the family was overly protective of the patient, the family caregivers

imposed their expectation on the patient to comply with the family’s wishes rather than respecting the

patient's autonomy in managing the illness. Further, she emphasized that although the family’s demands

stemmed from “good intentions” (hoe yi), it was important for the family to also accept the cancer

diagnosis, as much as the patient had accepted the illness.

4.2.4.2 Positives of cancer in the family

Patients and family caregivers agreed that the cancer diagnosis had shifted the dynamics of the

social networks of the patients and family caregivers. The majority of the patients and family caregivers

said that the family had become closer; they had also drawn closer to friends who provided support at

the time of the cancer diagnosis, particularly among friends who were cancer survivors. A male patient

(CP9) said communication with his daughter and siblings had increased since his cancer diagnosis, and

that his daughter had shown more concern for him, and contributed more to household chores. While

speaking of the couple relationship, one female patient (CP15) broke down as she commented, “we were

unable to swallow when eating together,” reflecting the emotion and burden the couple shared. As she

regained composure, she said that her husband had been her greatest source of help, and that she would

not have been able to cope without his support. Her husband (CC15) also commented on the couple’s

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coping with cancer, noting that he paid particular attention in caring for the patient, while taking care of

their two children and working full-time.

Several patients mentioned an increase in their appreciation for their family and friends who

cared for them, which in turn expanded their vision to support other cancer patients. One female patient

(CP2) said she had entrusted her life to God and saw pain and suffering as a gift that she could use to

help other people. She further said that life is very “lovable” (amazing), as she experienced sincere care

from people, which had enlarged her capacity to better appreciate her family’s and friends’ love for her.

Another female patient (CP21) commented that the “good thing” from her cancer diagnosis was her

increased ability to express herself to others, even though she experienced tension between the freedom

to speak up and her fear of facing cancer. She added that her illness was a “privilege,” allowing her to

understand other cancer patients and to help them “get through the cancer journey.”

At the same time, some family caregivers described the positive impact of caregiving on them, in

the same way that female patients spoke of the positive of cancer they experienced. Among the male

and female family caregivers who spoke of the positive change from their experience of caring for their

ill family members, one male family caregiver (CC1) said he had become more inquisitive about cancer

since his mother’s diagnosis with nasopharyngeal cancer, and took the initiative to talk to his friends

about the disease. In caring for his wife diagnosed with breast cancer, a male family caregiver (CC15)

said: “I have learned how to care (for the patient) with patience. The most important is to be patient, and

also patiently take care of the children, so that they know the family is still complete and beautiful (yuan

mei).” Another female family caregiver (CC2) caring for her sister-in-law diagnosed with ovarian cancer

noted: “I take upon myself to help. I do not think it is a sacrifice…I feel that it is logical and natural (lei

saw dong yin) (to help the patient). She has this difficulty, and I can share a bit.” The caregiver further

said, “My attitude has changed, not to be distraught, but to do what needs to be done. My concentration

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is not on how sad it is, but on what I should do to cope with this change.” The family caregiver

continued that her caregiving experience has helped her to understand her responses better, increasing

her awareness of her behaviour and thoughts.

Summary

Summarizing the study findings, patient distress emerged as the key factor in explaining patient

QOL. The effects of patient age on patient QOL, and particularly in patient social and emotional well-

being, were mediated by patient distress, such that lower distress in older patients explained better social

and emotional functioning. A key theme that surfaced from the qualitative data analysis was the

emotional regulation occurring in the family when coping with cancer. The negative impact of family

caregiver distress on patient emotional well-being was acknowledged by both the Chinese-speaking

patients and the family caregivers interviewed, although statistical significance was not found between

family caregiver distress and any of the variables related to the patient in the quantitative analyses. In the

interviews, younger and older patients alike indicated anxiety and worries about the impact of their

cancer diagnosis on their families. The following chapter provides an interpretation of the study

findings, integrating the results from the quantitative and the qualitative analyses, discussing the key

findings in light of the prior knowledge of the research topic gleaned from the literature reviewed in the

dissertation.

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Chapter 5: Discussion

The diagnosis of cancer evokes multiple responses, some of which are shared experiences among

patients and families, regardless of their ethnic and linguistic background. Other responses stem from

the socio-cultural context of the cancer experience, where cultural values and norms shape the Chinese-

speaking patients’ and families’ perceptions and expressions of their illness experience. For the patients

and family caregivers interviewed in this study, their integration in the broader Canadian society may

have shaped their cancer experience, as reflected in their responses to the issues they encountered

following a cancer diagnosis in the family.

Revisiting the conceptual framework used in the study to explore factors influencing patient

QOL, the study provided evidence to support the mediation role of patient distress hypothesized in the

framework. Patient distress emerges as the key factor in explaining patient QOL. While the effects of

patient age on patient QOL total were found to be mediated by patient distress in the combined sample

and in the Anglophone group, mediation effects in the QOL subscales were only observed in the

combined sample. The variation in the impact of distress across the QOL subscales found in the study

highlighted the importance to delineate patient QOL according to the domains of physical, social,

emotional and functional, within the conceptual framework. Contrary to the hypotheses proposed in the

study framework, family caregiver distress was not found to be significantly related to patient distress

nor with patient QOL in the study. Despite the lack of statistical evidence, the conceptual importance of

family caregiver distress as it relates to patient distress and QOL supports the inclusion of the family

distress variable presented in the study framework. From the interviews, the Chinese-speaking patients

and their family caregivers clarified the sources of their distress and the impact on patient QOL. Age

was not articulated as a factor influencing these patients’ and their family caregivers’ distress and QOL.

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Younger and older patient interviewees alike indicated anxiety and worries about the impact of their

cancer diagnosis on the family.

A key theme that surfaces from the qualitative data analysis is the emotional regulation occurring

in the family when coping with the cancer diagnosis. The negative impact of family caregiver distress on

patient emotional well-being was acknowledged by both the patients and the family caregivers

interviewed, highlighting the role of family caregiver distress in patient QOL. In addition to the findings

drawn from both the quantitative and qualitative analyses pertaining to the associations among the

variables depicted in the conceptual framework, the interviews also provide insights to what the

Chinese-speaking patients and family caregivers considered to be the right family support. The positives

of cancer as experienced by the patients as well as the family caregivers were also articulated in the

interviews, providing further understanding to the factors that influenced patient QOL.

5.1 Impact of patient distress on patient QOL

The diagnosis of cancer evokes an array of emotions and concerns across the domains of day-to-

day living. From the quantitative analyses, a higher distress level in the patients was found to be

associated with lower QOL regardless of the language group of the patient participants. This finding is

congruent with literature that examines the adverse impact of psychological distress on health-related

outcomes and QOL (Kim et al., 2008; Mehnert & Koch, 2008). Further, no group difference was found

regarding the impact of distress on the patient QOL. Regardless of the cultural and linguistic background

of patients, cancer may be understood as a serious illness that challenges the order of the individual’s

world, spanning the domains of the person’s QOL. To better understand the disruption that cancer brings

to a person’s life and the implications of living with cancer, it is important to clarify the nature of the

patient’s distress and the process through which it affects the patient’s QOL.

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5.1.1 Sources of patient distress

Responses to the items in the Kessler distress scale quantify their “feelings during the past 30

days.” To understand the nature of the distress, the interviews with the Chinese-speaking patients

provide clarification regarding the sources of their distress. In several accounts, patients described their

distress as stemming from the side effects of their cancer treatment. Such distress relates to feelings of

fatigue, pain, numbness, loss of taste and appetite, loss of mobility and memory loss. Family caregivers

interviewed also cited similar sources of distress observed in their ill family members. Regardless of

gender, patients spoke of the distress following cancer treatment that compromised their physical and

functional well-being.

The impact of cancer on the well-being of patients has been well documented in studies

examining the distress following cancer diagnosis and cancer treatment, where distress is said to be

multidimensional and includes the physical, emotional/ psychological, social, existential and spiritual

domains of quality of life (Meyerowitz & Oh, 2009; Miller, 2010). While side effects of treatment are

noted to physically affect the patients and their daily functioning, it is conceivable that the experiences

of such distress will also have adverse effects on the emotional and social well-being of the ill

individuals (Siegel et al., 2012). Particularly, fatigue and pain have been found to be associated with

depressed mood and anxiety (Brem & Kumar, 2011; Byar, Berger, Bakken, & Cetak, 2006). The

frustration of losing their capacity to manage their day-to-day activity and being dependent on others

while in treatment were reported to be the “most difficult” aspects in patients’ experience of the illness.

In a previous study on the cancer experience of Chinese-speaking patients, the practice of self-reliance

was highlighted when the patients spoke about issues relating to coping and recovery (Bell et al., 2010).

With the diagnosis of cancer and the onset of distress associated with the illness, these patients may be

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facing additional tensions when seeking to maintain the intricate balance of being independent within a

collective community, further undermining the individual’s emotional well-being.

The concern patients have about the impact of cancer on their children was highlighted by the

patient interviewees. Several of the female patients broke down when they spoke of the effects and

implications of the cancer diagnosis on their loved ones, including adult children and grandchildren. The

worry about their children also included working adult children, who were themselves parents. Distress

relating to family among the Chinese-speaking cancer populations has been examined in other studies

which investigated the impact of cancer on family relationships (J. Lee & Bell, 2011; Loke et al., 2003).

In families that adhere to the cultural norm where parenting responsibilities remain throughout the

family life span, the burden of coping with a serious illness may be further exacerbated by the patient's

distress due to the loss of capacity to continue the role as caregiver of the family.

5.1.2 Variation in the negative effects of patient distress across QOL domains

Variation in the negative effects of patient distress on patient QOL was observed across the

domains of the FACT-G scale. While QOL reflects the overall well-being of the patient, it is important

to note that QOL is a multi-dimensional construct; the breadth in QOL definition includes subjective

evaluations (such as satisfaction), perceived health status, or both evaluation and health status (Ferrans,

2005; Ferrell et al., 1995). The FACT-G scale used in this study includes the subscales tapping four

major dimensions of health-related QOL: physical, functional, emotional and social (Cella & Tulsky,

1993). Understandably, each domain of QOL may vary in importance and priority in an individual’s life,

according to individual context. Further, an individual’s weighting of each domain may also vary across

a person’s life span, where one domain of QOL may be of greater or lesser concern in comparison to

another domain over time.

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 The patterns in which patient distress was related to each of the QOL subscales also differed

across the language groups of patient participants, although the group difference was not statistically

significant. Conceivably, the cancer patient’s QOL may also differ according to cultural considerations,

including views of cancer etiology and family structure, even as QOL may be defined differently in

different cultures (Gotay, 2004). The lack of statistical significance in difference between the Chinese-

speaking and Anglophone groups may be attributed to the small sample sizes, or that the individual

responses between the two groups of cancer patients in the study are indeed congruent. Notwithstanding

the lack of statistical evidence, it would be prudent to also examine how distress is described in relation

to the patient’s domains of QOL among the interviewees in the study. This line of query would be

relevant and important in a culturally diverse cancer population in Canada.

The multiple regression results indicate that patient distress has the greatest impact on the

Chinese-speaking patient’s functional well-being, after controlling for the associated covariates. The

distress of no longer being able to “rely on oneself” (kaau zi gei 靠自己) but having to “trouble” (maa

faan 麻煩) others following cancer treatment may explain the strong association between patient distress

and patient functional well-being in the Chinese-speaking group, when the ill persons could not maintain

their day-to-day functioning without the help of others. When speaking of patient distress following

cancer treatment, the patient's sense of helplessness and frustration over reduced ability to be self-

sufficient in managing day-to-day life was articulated by Chinese-speaking patients as well as family

caregivers. The value of self-sufficiency, held by the Chinese-speaking cancer patients, may illuminate

the importance ascribed to deriving satisfaction from one’s ability to function and manage daily

activities. This help-seeking behaviour of individuals may parallel the observations made of families

with cultural values where the admission of having a problem is questioned and coping with illness is a

private matter (Chan et al., 2004; Rolland, 2005). For Chinese-speaking patients, the need to seek help

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from others in managing their daily life may be undermining the fulfilment they could derive when help

was rendered, when the tension between needing help and wanting to be self-sufficient arises. It follows

that functional well-being would be a critical domain when considering the quality of life of the

Chinese-speaking cancer patients, where compromised self-sufficiency may lower their functional

wellness.

5.1.3 Understanding the relation between cancer and social well-being

Chinese-speaking patients with high school education have reported lower social well-being,

compared to those with more education in the current study. The role of socio-economic status in the

context of cancer has been well described in the oncological literature, where the systematic variations

in health outcomes across the range of income, ethnicity and education contribute to the adverse

consequences of cancer (Ashing-Giwa & Lim, 2011; Bowen et al., 2007). Related to education is

proficiency in English among the Chinese-speaking cancer population seeking to navigate the Canadian

health care system in a foreign language. While the association between English fluency and patient

QOL in the Chinese-speaking group was not found to be significant in the quantitative analyses, the

patients and family caregivers interviewed in the study reiterated the importance of language in their

coping with the illness. Specifically, the lack of English language skills was said to be a barrier in

communication with the healthcare professionals by patients and family caregivers, along with related

limited access to language-appropriate resources. To help them manage the disease, patients and family

caregivers consulted with Chinese language resources from the cancer care network based in Asia. The

use of resources from the non-Canadian healthcare context was also seen as potentially problematic by

many of the patients and family caregivers interviewed, as the information and approach to cancer care

is contextualized to the environment where such resources originated. An example of this is the use of

traditional Chinese medicine and food practice that is upheld as complementary to the Western bio-

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medical approach to cancer care in Asia. However, such forms of medicine may not be supported in the

North American system of care and by the practice of the healthcare professionals, resulting in tension

for the Chinese-speaking patients and their families living in a Western society, seeking to integrate their

cultural practice of healing with the mainstream prescription of cancer treatment.

While the lack of English skills among patients with lower education may inhibit their quest for

knowledge about cancer, the constraints in communicating with healthcare professionals and accessing

appropriate resources could also limit the understanding of cancer among the Chinese-speaking patients

and family caregivers. The patients and family caregivers interviewed cited several misconceptions said

to be commonly held in the Chinese community, including identifying cancer as a "death penalty" and

"contagious." This finding concurs with Wong-Kim and colleagues’ study on assessing the cancer

beliefs among the Chinese immigrant community in the US, where the belief of cancer as incurable and

contagious was reported (Wong-Kim, Sun, & DeMattos, 2003). The misconceptions circulated in the

Chinese community further heightened fear and social stigma towards a cancer diagnosis, where patients

and families were discouraged from talking about the illness and the distress they encountered in the

family and in their social network (Wong-Kim, Sun, Merighi, & Chow, 2005). In addition to the

patients’ and family caregivers’ own reservations about disclosing the cancer diagnosis to non-family

members, some patients also received advice from friends to "not tell" others about the illness, so as to

avoid being evaluated. For those patients who feared being negatively regarded following their cancer

diagnosis, the potential risk of being stigmatized would further hinder them from reaching out to others

for help in coping with their illness. As Cheng and colleagues observed, the stigmatization effects could

lead to social isolation, reducing the patient’s social network for drawing support (H. L. Cheng et al.,

2013). Conceivably, the tendency to withdraw instead of reaching out to converse about the concerns

around cancer will continue to isolate these individuals in their experience as cancer patients. For the

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Chinese-speaking patients who felt disconnected with their social environment, such isolation would

further hinder understanding of their illness; the misconception and social stigmas associated with

cancer diagnosis could continue to distance them from their social network, compromising the patient

quality of life.

5.1.4 Connection of disclosure of cancer diagnosis and social support

While the social stigma attached to cancer may have prevented patients and their family

caregivers from discussing the illness outside of the family, findings from the interviews provide further

insights into the issue of disclosing the cancer diagnosis in the Chinese community. Several of the

interviewed patients and family caregivers spoke of their reservations in disclosing the cancer diagnosis

within the family and to their social network, in order to protect each other and themselves from the

negative reaction of others towards cancer. The protective stance that these patients and the family

caregivers adopted is instrumental in their intent to strengthen the social support within the family,

where each party assumes the role of gate-keeper to shield each other from distress and to safe-guard

one another’s well-being. Among the patients who indicated reservations in disclosure during the

interview, they also emphasized the importance of having some clarity regarding their condition prior to

talking about their illness with others, so as to regulate the anxiety stemming from the uncertainty of

their cancer diagnosis. For the patients and family caregivers who highlighted the importance of

exercising discretion in disclosing the cancer diagnosis, sharing the news of the cancer diagnosis only to

selected individuals is congruent with their goal to solicit support to best cope with the illness.

Notwithstanding the reservation about disclosure, some patients and family caregivers spoke of

the practical help and encouragement they received when they reached out to talk about the cancer

diagnosis among family members and friends. Others sought to connect with the larger community of

cancer survivors, who provided the patients and families with informational and emotional support while

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undergoing cancer treatment. Particularly, the patients who spoke of their connection with cancer

survivors noted the decrease in their fear of the disease and increase in their confidence in coping with

the illness through such support. The impact of peer support hinges on the ability of patients to identify

with cancer survivors, as patients spoke of “being understood” by those who have experienced the

distress of living with cancer. At the same time, the confidence that patients spoke of in coping with

their illness may also be conditioned by the positive outcomes of the cancer survivors whom they sought

for encouragement. As one family caregiver said of peer support, she was concerned that her loved one

might be distressed when she heard of cancer recurrence among participants in support groups. Where

peer cancer survivors provide the unique benefits of emotional and informational support, the patients

gain from the mutual sharing of experience; they speak of being understood and finding positive role

models for coping with the illness (Bell et al., 2010; H. L. Cheng et al., 2013; Ussher, Kirsten, Butow, &

Sandoval, 2006). For those who found peer support to be important, the identification with other cancer

patients helped to normalize the patients’ distress, reconnecting the patients to their social environment

while living with cancer. In the words of a female patient who spoke positively of peer support, Chinese

patients who connected with peers could learn “to walk the journey of cancer survivors” and assume the

“new normal,” adapting to life after a cancer diagnosis.

5.2 Mediating role of distress in patient QOL

Within the conceptual framework of this study, several factors pertaining to the patient’s and

family caregiver’s background, illness characteristics and social/family relationships were identified as

having direct effects on the patient’s QOL. However, only patient age and patient education were found

to be directly associated with patient QOL, although these findings varied across participant groups and

across domains of QOL. The positive association between patient age and patient emotional well-being

concurs with past studies where older patients reported lower emotional distress and better quality of life

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in the mental health domain following a cancer diagnosis (Mehnert & Koch, 2008; Thomas et al., 2011).

Further, Nishigaki and colleagues assert that life stages, as they relate to changes in the individual’s

social and personal roles, should be considered when examining the psychological adjustment of cancer

patients (Nishigaki et al., 2007).

When examining the narratives of older women diagnosed with breast or gynaecological cancer,

the findings from Sinding and Wiernikowski suggest that a long life of hardship may provide a context

for the assessment of cancer as non-disruptive (Sinding & Wiernikowski, 2008). The authors observe

that the experience of this latest chronic illness may be rendered normal by those who had accumulated

adaptation skills for significant health and social problems throughout a lifetime leading to old age.

While the life experiences of older patients may have enhanced their capacity to adapt in times of

distress, the roles and responsibilities of younger patients in their respective life stages may also add to

their burden in managing the disease. These responsibilities included providing care to dependents and

maintaining employment; the worry about their children and the anxiety of returning to work after

cancer treatment were cited as concerns to the younger cancer patients interviewed. Conceivably, the

impact of a life-threatening illness permeating the life domains of the younger patients, particularly

younger women, may be more destabilizing to their efforts to cope with the distress of cancer (Wong-

Kim & Bloom, 2005). In response to literature suggesting older people already living with illness may

experience cancer as less disruptive, Sinding and Wiernikowski recommend that researchers be

cognizant of the influence of demographic characteristics (including age, class, gender) in people’s

construction of their chronic illness experience, where a long life characterized by sufficiency may also

be associated with a less distressing assessment of cancer (Sinding & Wiernikowski, 2008).

The higher social well-being reported among older patients in the study reflects their satisfaction

with their social relationships, where the ill persons felt supported and connected with their family and

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friends. While literature has suggested that larger social network size and adequate emotional support

are associated with higher QOL, Cheng and colleagues’ study of Chinese cancer survivors highlights

that it is patient satisfaction with social support that influences QOL, rather than the network size per se

(H. L. Cheng et al., 2013). For younger patients, the roles and responsibilities (such as career and

parenting) in their respective life stage may compromise their capacity to cultivate their social network.

In addition to facing time constraints in building up social relationships outside of the family, the

demands from work and family life may leave these individuals with less mental space to reflect on and

strengthen the quality of their social relationships. It follows that in times of serious illness, gaps in

social support may emerge and these younger patients may feel less satisfied with their communication

and connections in their social network. Where an older patient's life experience or life stage may serve

to buffer some of the negative impact of distress during a serious illness, the satisfaction with social

relationships may also lessen the impact of psychological distress at times when social support is critical

to well-being. Such positive evaluation of the social network may thereby protect the older patient from

further anxiety following a cancer diagnosis.

5.3 Impact of family caregiver distress on patient QOL

Notwithstanding the conceptual importance of the role of the family caregiver in the patient’s

coping with serious illness, the quantitative findings did not provide evidence to support the

hypothesized negative association between family caregiver distress and patient QOL; nor with any of

the QOL subscales. Further, no significant association was found between family caregiver distress and

patient distress. There may be several reasons for the lack of evidence in the current study to support the

role of family caregivers in patient QOL. Family caregivers in both the Chinese-speaking and

Anglophone groups have reported lower distress, compared to the patients. This sample of less

distressed family caregivers may reflect a selection bias; family caregivers who volunteered to

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participate in the study may have in fact experienced less distress at the time of study enrolment or they

may have been less inclined to report of the adverse of impact on themselves. The family caregiver

sample is also much smaller than that of the patients, resulting in less power to detect an effect.

Another reason for the lack of significant findings may also be attributed to the choice of

instrument used in measuring family caregiver level of distress, where the measurement of patient

distress may have differed from the measurement of family caregiver distress. The Kessler distress scale

(K6) is a short screening scale consisting of “a heterogeneous set of questions that define behavioral,

emotional, cognitive and psychophysiological manifestations of psychological distress” (Kessler et al.,

2003, p. 185) in terms of frequency over a period of “past 30 days.” In Fletcher and colleagues’

conceptual model of cancer family caregiving, the distress appraisal also involves caregiver appraisal of

burden, ability, needs and future outlook (Fletcher, Miaskowski, Given, & Schumacher, 2012).

Northouse and colleagues propose that when assessing family caregiver distress, it is important to

consider questions that seek insight of the family caregivers’ access to resources to provide optimal care,

ability to manage multiple responsibilities, engagement in self-care and capacity to keep their spirits up

(Northouse et al., 2012). It follows that the assessment of family caregiver distress may require items

centred on concerns of the family caregivers, to better reflect the family distress in caring for loved ones

diagnosed with cancer. Notwithstanding the inclusive results regarding the role of family caregiver

distress in the study, it would be prudent to have understanding of the nature of the distress that family

caregivers experienced, as it relates to caregiving and the patient’s well-being.

5.3.1 Sources of family caregiver distress

In caring for loved ones undergoing cancer treatment, family caregivers articulated a sense of

helplessness when the patient was suffering from the side effects of the treatment. The effects of a

patient’s distress on the family caregiver has been examined in family caregiving literature. One meta-

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analysis found a tendency for family caregivers to report more distress during the treatment phase when

the demands of caregiving were high. In another study on gender differences in caregiving distress,

husband caregivers were found to report higher caregiver’s esteem and lower caregiving distress,

compared to wife caregivers (Kim, Loscalzo, Wellisch, & Spillers, 2006). In cases where husbands

provided care to their wife with poorer psychosocial functioning, Kim and colleagues found that

husband caregivers reported greater caregiving distress, highlighting the role of caregiver gender and

patient psychosocial adjustment in explaining distress in family caregiving.

While the comment of family caregivers being “more distressed” than the patients was raised by

some female family members interviewed in the study, such remarks may be pointing to the family

caregivers’ feelings of helplessness while seeking to comfort the patients. In addition to witnessing the

distress of the patients, the family caregivers are concurrently wrestling with limitations in relieving the

suffering of their loved ones, which may further exacerbate the family caregiver’s distress. Conceivably,

the interrelatedness between the patient and family caregiver distress is a significant source of tension

for both patient and caregiver throughout the illness trajectory, where the burden of caregiving adversely

impacts the quality of care rendered (Hagedoorn et al., 2008; Milbury, Badr, Fossella, Pisters, &

Carmack, 2013; Northouse et al., 2012; Segrin & Badger, 2014). For family caregivers who seek to

provide care by protecting their ill loved ones from the physical and mental pain of cancer, the tension

arising from feeling helpless may be more vexing, adding to the burden of caregiving (J. Lee & Bell,

2011; Liu et al., 2005).

Family caregivers also spoke of feeling isolated when assuming the role of primary care provider

for the ill loved one in the family. This sense of aloneness was identified as particularly distressing for

those where migration has restricted support from extended family and close friends still living in their

country of origin (Heidenreich, Koo, & White, 2014). Notably, the impact of migration and the nature of

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the distress of migrant families are key considerations in understanding an individual's illness experience

and help-seeking behaviour (R. Lee et al., 2001). For immigrant families, the separation from other

family members and friends, who had been a key source of support in times of critical need, may also

create a sense of abandonment in patients and families seeking to navigate a health care system that

requires competency in language and in self-advocacy.

Notably, the lack of English skills may be a barrier to communication with healthcare providers

and access to disease information. Moreover, for families from a culture where healthcare providers are

esteemed as the experts to give directives in patient care, such beliefs may be at tension with values of

patient autonomy and self-advocacy promoted in the Canadian healthcare system (H. L. Cheng et al.,

2013; So et al., 2013). Conceivably, the distinct health beliefs and value systems, as well as the

linguistic background of immigrant care recipients that differentiate them from the host society, may put

them at odds with the Canadian health system, adding to the distress in their illness experience

(Marshall, Wong, Haggerty, & Levesque, 2010; Z. Wu, Penning, & Schimmele, 2005). The

incongruence between the family caregivers’ beliefs and the values of the mainstream culture about care

provision may result in the families feeling lost in their quest to meet the care needs of their loved ones

diagnosed with a life-threatening disease. Coupled with the absence of a network of social support, the

family caregivers’ feeling of isolation may well be an impediment to their well-being over the course of

their family caregiving experience.

In addition to the physical and emotional demands of caregiving, a major source of tension the

family caregiver interviewees identified was the ongoing concern about balancing the competing

priorities between providing care to their ill loved ones and attending to their own needs. Studies on

family caregiving have reported the demands of caregiving may impact various aspects of the family

caregivers’ lives, including family and social relationships, career, financial, physical and emotional

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health (Golant & Haskins, 2008; Milbury et al., 2013; Stenberg et al., 2010). Caregiving may be

particularly stressful when caregivers, who are employed full-time, are also entrusted with the tasks of

caring for the patient and other members of the family. The struggle that younger family caregivers

encountered also reflects the tension in balancing demands of their caregiving role with career demands,

especially when cancer care persists over time (Kim et al., 2010). In work environments where the

family caregivers do not feel supported in their caregiving role, the demands of caregiving and

employment can heighten their distress, even as the time required to provide care will impact the family

caregivers’ personal routine/schedule and social functioning (Kurtz et al., 2004). With reduced

opportunity to build up social support network and time for respite, the distress of the family caregivers

may increase.

The family caregivers of the Chinese-speaking patients interviewed included spouses, children

and family-in-law, all of whom were said to have assumed a key role in enhancing patient coping with

cancer. Of particular interest is the type of relationship between the patients and the family caregivers

observed in the Chinese-speaking sample in the study, where the persons providing care may not be

members of the immediate family. This phenomenon has been cited in earlier work on the functioning of

Chinese cancer support groups, where the family-in-law of the patient would attend the group meetings

together with the patient, or attend the meetings without the patient (Bell et al., 2010). Understandably,

the role of the family caregiver in the family unit shapes the experience of caring for their ill loved ones.

It follows that the sources of distress may vary according to the nature of the relationship between the

patient and the family caregiver.

5.3.2 Distress and emotional regulation in the family

The Chinese-speaking patients that were interviewed spoke about the interrelatedness between

the ill person's and the family caregiver's distress, despite the lack of significant findings in the

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association between patient distress and family caregiver distress in the quantitative analysis. In the

interviews, both patients and family caregivers described situations where they sought to maintain a

positive front by concealing their negative emotions from each other, in order to protect each party from

further distress. Family members sought to downplay their distress in order to protect the patients, while

patients noted their family’s attempt to regulate their emotions. The findings on the concealment of

negative emotions in the family, following the diagnosis of a life-threatening illness, is consistent with

other literature on the family caregiver's experience of cancer (J. Lee & Bell, 2011; Liu et al., 2005;

Zahlis & Lewis, 2010). The practice of protective truthfulness in response to distressing news involves

family caregivers choosing not to disclose the news of a cancer diagnosis to the patients; and also,

patients deciding against disclosing their cancer diagnosis to more vulnerable members in the family.

Such practices of non-disclosure encompass emotional concealment, with the goal to shield one another

from the emotional pain that is regarded as disruptive to an already destabilized state in the family

following the diagnosis of a life-threatening illness (Heidenreich et al., 2014). In this study, patients

revealed that they also sought to protect their young children and elderly parents by not telling them of

the news of the cancer diagnosis. Notably, members in the family were particularly sensitive and

concerned with the impact of the illness on one another. To regulate the level of distress in the family

following a cancer diagnosis, patients and family caregivers both assumed the responsibility to

safeguard each other’s mental health, upholding non-disclosure in the interest of the other.

Much as the safeguard of an individual’s well-being is of priority in coping with distress in the

family, maintaining harmony in the family unit may also be fundamental to the beliefs and values in

some Chinese families. The quest for harmony is congruent with the notion of preserving stability, and

for some Chinese people, it may also be deemed a virtue to be upheld in an individual’s life and in the

family (Ching, Martinson, & Wong, 2012). In times of a life-threatening illness, the family caregivers

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assumed the personal responsibility to regain stability in the family, by protecting their ill loved ones

from further distress through emotional regulation. However, during the interviews, family caregivers

(regardless of gender) spoke of their weariness and the uncertainty of coping with cancer in the family,

especially where attempts to conceal distress from the patients had added further demands to the

caregiving role. While family caregivers faced the ongoing concern to protect the patients, they also felt

torn between acknowledging their own negative emotions and putting the patients’ interest ahead of

their own, which also heightened the stress of caregiving. Female and male patients alike reported the

distress they observed in their children, and at the same time, recognized the impact of the distress of

their loved ones on their own emotional well-being. Particularly when distress relates to the fear of

recurrence, the distress of the patient and the family caregiver will mutually influence one another

(Mellon et al., 2007). Cognizant of the adverse impact that the distress of their loved ones could have on

the patients themselves, the ill persons also sought to shield themselves from the distress of their family

caregivers by regulating their emotions. This highlights the reciprocity of patient–caregiver

relationships, “each party affect[ing] the other emotionally and behaviourally” (Chan et al., 2001, p.

389), where emotional regulation serves to protect other and oneself from the distress of cancer in the

family.

5.4 Benefits of family caregiving and the positives of cancer

Notwithstanding the burden of caregiving on family caregivers, the patients interviewed were

articulate about the positive impact of family caregiving on their well-being. Notably, family caregivers

played a pivotal role in strengthening patients to cope with cancer and enhance their QOL. The help that

patients received was not confined to the practical tasks family caregivers performed in meeting the

immediate needs of patients. In addition to practical help, the care that family caregivers rendered also

encompassed informational, emotional and social support to the patients. To better prepare the patients

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in managing the disease, family caregivers sought to update the patients with information on the nature

of their illness and the recommended cancer care. Family caregivers also attempted to strengthen the

patient's network of social support by seeking the help of friends to connect with other cancer survivors.

Of particular importance to the patients were the family caregivers’ efforts to make themselves available

and taking cues from the patients on how they wish to be helped. The capacity of the family caregivers

to be present and to comply with the patients’ wishes on the "right" care, was deemed to be comforting

to the patients and respectful of patient autonomy. This finding concurs with literature that highlights the

importance of providing care and support that matches situation-specific patient needs (Chan et al.,

2004; H. L. Cheng et al., 2013; So et al., 2013). Where there is incongruence between the patient and

family caregiver expectations of care needs, the resultant tension will add to the distress of both the

patient and the family caregiver.

Patients and family caregivers also spoke of the positive aspects of cancer when the cancer

situation was seen to improve their quality of life. The benefits from the cancer experience may be

classified according to three domains of life, namely: enhanced social resources, enhanced personal

resources, and improved coping skills (Jim & Jacobsen, 2010). Despite the distress of the cancer

diagnosis, patients and family caregivers reported positive changes that were experienced individually,

and as a family unit, while living with the illness. Notwithstanding the challenges encountered, these

cancer patients spoke of the experience of a new emotional depth and enhanced relationships with

family that characterized life after the cancer diagnosis (H. L. Cheng, Sit, & Cheng, 2015; Miller, 2010).

Patient encounters of personal growth were included as reports of increased capacity to find meaning

and purpose in their suffering, also motivating them to seek ways to support other cancer patients. In

addition, the patients’ narratives of enlarged vision also included increased appreciation for family

members and friends, thereby strengthening relationships in the social network of the patients and

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further enhancing patient QOL. However, such teachable moments of cancer may not be the experience

of all cancer patients. Indeed, the illness experiences among patients are diverse, and may include both

positive and negative transformations in the ill person’s perspective and identity following a cancer

diagnosis (Kahana et al., 2011). It follows that it would be important to neither insist nor reject benefit-

findings in the patients’ experience of cancer, where either stance would be disregarding of the patients’

interpretation of their own illness experience, and possibly leading to increased isolation of the

individuals (Jim & Jacobsen, 2010).

In caring for their ill loved ones, some family caregivers similarly reported positive impacts on

themselves and on family relationships. The findings of positive experiences of family caregivers concur

with results of previous studies on the family caregivers' experience in caring for terminally ill cancer

patients in Hong Kong, where family caregivers associated the care they provided to a relational

commitment that showed their love and support for the patient (Mok et al., 2003; Wong & Chan, 2007).

For these family caregivers, they recognized an increased self-awareness, acknowledged their

limitations in relieving the patient's suffering, and, at the same time, aspired to enhance the quality of the

care they provide to their ill loved one and other members in the family. As in the patient's experience of

changes in their social relationships, several family caregivers described closer relationships with the

patient, and being more sensitive to patient needs. While some family caregivers interviewed reported

that they have always shared close a relationship with their ill loved one, the role of caregiving has

heightened their awareness of the patient's struggle with illness. This insight allowed family caregivers

to share the pain of the patient; patients felt understood and validated and the dyadic relationship was

strengthened.

While caregiving for their ill loved ones, the family caregivers observed increased openness to

talk about cancer with friends and other individuals outside of the family, and, as such, enhanced the

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support for their caregiving role. The willingness to reach out for support by disclosing to others the

cancer diagnosis in the family reflected the family’s transition from their initial fear of the disease to

motivation for managing the illness in the family. By proactively seeking to gain understanding of

cancer, family caregivers are empowered in their role as care providers, and the family’s adaptation to

the illness is further strengthened.

Summary

Regardless of the cultural and linguistic background of patients and family caregivers, cancer

may be understood as a serious illness that challenges the order of the individual’s world. The study

findings on patients’ and family caregivers’ experience of distress and the impact on their QOL may be

common to all diagnosed with cancer, irrespectively of their cultural and linguistic background. At the

same time, the differences in the impact of patient distress across QOL domains between the Chinese-

speaking and Anglophone groups in the study would suggest potential cultural variation in the responses

to cancer. The insights to the nature of the patient’s and the family caregiver’s distress, and the process

through which it affects the patient’s QOL, will enhance our understanding of the disruption that cancer

brings to a person’s life and the implications of cancer for the family. Where older patients are found to

report higher QOL, as mediated by lower distress, the changes in an individual’s social and personal

roles are important considerations in clarifying the psychological adjustment of the ill person. In

families where members are particularly adverse to the psychological distress arising from a cancer

diagnosis, the responsibility to safeguard the mental health of members in the family is upheld by both

the patient and the family caregiver, as each seeks to regulate the level of distress in the family.

Notwithstanding the challenges of coping with cancer, the positive aspects of cancer are also reported by

some patients and family caregivers, highlighting the complexity of living with the illness, individually

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and as a family. The following chapter concludes the dissertation, with recommendations for future

research to advance knowledge on the study topic.

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Chapter 6: Conclusions and Recommendations

6.1 Summary of key findings

In conclusion, the following key findings are summarized in this study, which focused on how

the QOL of a cancer patient could be impacted by the level of distress of both the patient and the family

caregiver, particularly in a Chinese-speaking population. First, the negative influence of patient distress

on patient QOL was found to vary across the subscales of the QOL measure. This emphasizes the

importance of examining the domains of QOL when investigating the impact of cancer on a patient’s

well-being. Second, the study sheds light on the mediation effects of patient distress on patient

emotional well-being, where lower distress in older patients explained better emotional functioning

Third, the association among family caregiver distress, patient distress and patient QOL may be better

understood in light of the nature of distress in family caregiving, as spoken about in the interviews.

Although quantitative findings on the associations involving family caregiver distress are inconclusive,

this study raises important questions about the sources of distress of the family caregiver, when

examining how the role of family members can influence a patient as they cope with cancer.

6.2 Strengths and limitations of dissertation

This study examined an important topic pertinent to the care of an understudied population of

Chinese-speaking cancer patients and family caregivers, and encompassed a number of strengths. First,

this study enhances our understanding of the impact of cancer on families of a minority ethnic group in

Canada, a country with an increasingly diverse population. Even in the broader Canadian context,

studies that examine perspectives on the impact of cancer care on patients and families are limited.

Second, the inclusion of patient and family caregiver dyads in the study provides insights into an

individual perspective as well as a dyadic perspective of the interrelatedness of patient and family

caregiver experiences of cancer, increasing knowledge about the impact of cancer on the family. Third,

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the study is enhanced by the diversity of cancer sites, as well as the perspectives of male and female

patients and family caregivers represented in this research. Fourth, as a Chinese-speaking immigrant, I

share many of the cultural beliefs and values of those whom I interviewed; the commonality allowed me

to remain close to the data while I sought to make meaning of the narratives of the patients and family

caregivers. Fifth, my familiarity with the culture enabled me to understand the subtext of the statements

made in the interviews, thereby creating a space for the patients and family caregivers in which they

could speak freely, minimizing the pressure on them to produce socially desirable responses. These

factors may have increased the trustworthiness of the data. Lastly, the mixed-methods approach used in

this study contributes to the richness and relevance of the data, where the voice of the health care

recipients provides quantitative and qualitative evidence for the development of patient and family-

centred care.

Notwithstanding the strengths of the dissertation, several limitations in the study need

mentioning. The cross-sectional survey design used in the study sought to investigate the association

among the variables of primary interest, namely patient and family caregiver distress and patient QOL.

However, it did not allow for temporal relationships to be established. Particularly, the causal relations

between the distress and QOL variables hypothesized in the conceptual framework may not be imputed

without a longitudinal design. Nonetheless, the findings provide a means to assess compatibility with

past studies concerning the association of the study variables. The small sample size of 57 patient and

family caregiver pairs of observations limited the power to detect statistical significance in subgroup

analysis. In this study, language is used as the key descriptor of the study populations. As such, patients

and family caregivers of Chinese descent who do not speak Chinese are not represented in this research,

and the cancer experiences investigated are limited to a segment of the broader Canadian Chinese

population. The participants of the study were patients and their family caregivers who volunteered to be

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in the study. Where voluntary choice is the means by which participants are accrued in a study, self-

selection bias may occur. Among the self-selection of Chinese-speaking participants, these participants

demonstrated knowledge about cancer and were receptive to talking about the illness, even as these

individuals may also have felt strongly about the impact of cancer on the family. Further, these patient

participants have sought to support other cancer survivors in efforts to improve cancer care, and hence,

may have had less distress than other Chinese-speaking patients and families in the larger cancer

community. However, it is not logistically feasible to conduct a true random survey of the cancer

population. Where the small sample size of cancer patients and family caregivers reflects the challenges

in primary data collection in my study setting, the difficulty in recruitment may be addressed if the

routine collection of psychosocial data, such as QOL and distress scales, is considered as part of clinical

cancer care. Despite the limitations, the study contributes to our understanding of ways that cultural and

linguistic factors might explain differences in the experiences of cancer by patients and their family

caregivers, while providing possibilities for future studies about cancer in culturally diverse settings.

6.3 Implications and knowledge translation

This study provides insights into the cancer experience of a group of Chinese-speaking patients

and family caregivers, expanding our knowledge of cross-cultural cancer care. The intended outcome is

congruent with the Canadian national agenda of patient and family-centred care approach, where

practitioners and system managers are further informed regarding the delivery of culturally-appropriate

care that responds to the needs, values and beliefs of the ill persons and their family members

(Accreditation Canada, 2016). In this regard, it is important to consider how cultural background shapes

service needs, and in turn service delivery, to cancer patients and their families. Further, early

intervention with patients and their family caregivers is important and necessary to alleviate distress in

both members as a consequence of the disease and caregiving. Where age may be a factor affecting

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distress and a patient’s quality of life, it is recommended to tailor interventions with patients and family

members in younger and older age groups, to address the specific concerns that align with their

experiences of cancer.

Study findings suggest that the patient-family caregiver dyad be considered as the unit of care;

because of emotional reactions to cancer within a patient and their family, there is a recognized benefit

to offer supportive cancer care from a systems approach. Some family caregivers encounter difficulties

in finding adequate help or services to support their caregiving role. This deficit may persist when the

family caregiver must put the needs of their ill loved ones ahead of their own. At the same time, the

needs of the caregivers themselves could be neglected by healthcare professionals or their own friends

when the focus is foremost on the needs of the patient. To help enhance the quality of life of patients,

interventions also need to include language appropriate resources, to support the caregiving role of

family members. Providing family caregivers with information about the disease, and the management

of the physical and emotional effects of the disease, could help strengthen coping with the multiple

demands on family associated with cancer. By providing information and mobilizing social resources to

support cancer patients and family caregivers, understanding of the illness would increase and social

isolation in cancer experiences could be prevented.

As part of my ongoing efforts to bridge research and practice, with the goal to contribute to our

understanding of issues in cross-cultural research and care needs of cancer patients and families, insights

about the research process and preliminary findings have been presented at national and international

conferences, including the Canadian Association of Psychosocial Oncology Conference, the World

Congress of Psycho-Oncology and the International Society of Quality of Life; researchers, clinicians

and policy-makers were all represented in the audiences. Contributions to the body of literature on

psycho-oncology will continue through journal publications, conference presentations, webinars, and

128
article postings focusing on patient and family caregivers research and advocacy networks. Following

from presentations made to healthcare professionals during the data collection phase of the study, I will

continue to disseminate information from this study to cancer care professionals and decision-makers at

the BC Cancer Agency annual conference, professional rounds at cancer centres and presentations to

cancer care organizations in the community. Other planned important knowledge translation activities

include talks at cancer support groups, in order to engage cancer patients and their families in

conversations on care that aligns with their goals. The feedback from patients and family caregivers will

be conveyed to clinicians through the activities outlined above in order to engage healthcare

professionals active in their practice of patient and family-centered care.

6.4 Future research

From this study, we have observed the complexities of investigating the impact of cancer on the

family, and particularly in the efforts undertaken to deepen our understanding of the relations between

psychological distress and QOL among cancer patients and family caregivers from a culturally diverse

population in Canada. It follows that more studies, quantitative and qualitative, are needed to strengthen

the evidence of this emerging topic in supportive cancer care and family caregiving research. Future

studies could build on this work by adopting a longitudinal study design. This design would enable

tracking changes in patient quality of life over time and clarifying causal associations among the key

variables examined in the study. For future investigations of the role of family caregiver distress, it

would be prudent to consider using a different measure for this variable. Particularly, the family

caregiver distress scale could include measurement of family caregiver preparedness and mastery in

providing care, acknowledging family caregiving burden. In recognition of the role of the family in

patient coping, more research is needed to evaluate the impact of interventions that empower the family

as part of integrative patient care. In light of the greater burden and higher emotional distress reported by

129
women family caregivers, it will be important that more studies examine the experience of female

caregivers and identify strategies to help them manage the demands associated with providing care.

While the conceptual framework underpinning this study centred on the quality of life of

patients, it would also be important to examine the impact of distress on family caregiver QOL.

Considering the burden of caregiving and the interrelatedness of patient and family caregiver responses

to cancer highlighted in the study findings, further investigation on the family caregiver’s QOL as an

outcome variable would help us better understand the impact of cancer on the family. In view of the

cultural context in which individuals make meaning of cancer, future studies that include qualitative

interviews with other ethnic groups would be important to better understand the impact of the illness on

family relationships. While the interview questions in this study were relatively prescriptive, further

qualitative research is needed, to better understand how an inductive approach in posing the questions

may elicit different responses. Granted the limitation of using language as the only indicator of culture

in this study, future research to examine patient and family caregiver dyads of Chinese ancestry where

they do not speak Chinese would be relevant, to gain insights into the role of acculturation on family

adaptation to cancer. At the same time, the knowledge of the persistence and change of cultural values

and practices over time in such a cancer population will enhance the understanding of Canadian patients

and family caregivers living between cultures.

With the average annual number of new cancer cases estimated to increase 79% in the next two

decades, a substantial number of Canadians are anticipated to be living with a cancer diagnosis

(Canadian Cancer Society, 2015). At the same time, the improving survival rate reported for most types

of cancer, also means that people are living longer after their diagnosis, and are anticipated to have

unique and complex healthcare needs in the course of their cancer journey. Where cancer is a family

disease, the illness journey also includes the family caregivers, being the “invisible pillars of the

130
healthcare system” (The Family Caregivers’ Network Society, 2010, p. 7). The existing limitations of

healthcare budgets will mean that families will have to carry even more increased burdens of caregiving.

Particularly for families where cultural values and beliefs define the role of the family caregivers,

understanding of the cultural and social context of ill persons and family members is foundational to

patient- and family-centred care. Future planning of health resources, towards a sustainable system of

cancer care in Canada, must involve partnership with the family and provide support for family

caregivers.

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Appendices

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Appendix A: Demographics/Background information questions

I. Anglophone patient
1. What year were you born?
2. Where were you born?
3. What is your highest education level attained?
4. What type (site) of cancer do you have?
5. What stage is your cancer diagnosis?
6. When were you diagnosed with cancer?
7. What cancer treatments have you had?

II. Anglophone family caregiver

1. What year were you born?
2. Where were you born?
3. What is your highest education level attained?
4. What type (site) of cancer is the patient diagnosed with?
5. What stage is his or her cancer diagnosis?
6. What is your relationship with the patient?
7. How long (months) have you been providing care to the patient?

III. Chinese-speaking patient

1. What year were you born?
2. Where were you born?
3. When did you migrate to Canada? (years in Canada?)
4. Did family members accompany you to Canada? Number of children and ages?
5. What is your highest education level attained?
6. What is your mother tongue?
7. How do you assess your English fluency (beginner, intermediate, advanced)?
8. What type (site) of cancer do you have?
9. What stage is your cancer diagnosis?
10. When were you diagnosed with cancer?
11. What cancer treatments have you had?

IV. Family caregiver of Chinese-speaking patient

1. What year were you born?
2. Where were you born?
3. If not born in Canada, when did you migrate to Canada? (years in Canada?)
4. What is your highest education level attained?
5. What is your mother tongue?
6. How do you assess your English fluency (beginner, intermediate, advanced)?
7. What type (site) of cancer is the patient diagnosed with?
8. What stage is his or her cancer diagnosis?
9. What is your relationship with the patient?
10. How long (months) have you been providing care to the patient?

142
Appendix B: Kessler Distress Scale (K6), English version

143
Appendix B: Kessler Distress Scale (K6), English version (continued)

144
Appendix C: Kessler Distress Scale (K6), Chinese version

145
Appendix C: Kessler Distress Scale (K6), Chinese version (continued)

146
Appendix D: Functional Assessment of Cancer Therapy (FACT-G), English version 4.0

147
Appendix D: Functional Assessment of Cancer Therapy (FACT-G), English version 4.0
(continued)

148
Appendix E: Functional Assessment of Cancer Therapy (FACT-G), Chinese version 4.0

149
Appendix E: Functional Assessment of Cancer Therapy (FACT-G), Chinese version 4.0
(continued)

150
Appendix F: Semi-structured interview script for Chinese-speaking patient

I. Experience with cancer

1. How did you first learn of the diagnosis?
2. How did you react when you learned of the news?
3. How did you tell others, family and non-family members? How did they (family
members and non-family members) react?
4. What changes have you noticed in your mood and feelings, from the time of the
cancer diagnosis?
5. How has the experience of living with cancer affected your life?
- Physically
- Relationally with family and friends (social/family)
- Emotionally
- Ability to manage day to day living (functionally)

II. Patient-family caregiver relationship

1. Who is the primary family member who provides care for you since the cancer
diagnosis?
2. How does he/she (family caregiver) react to your illness?
3. How do you respond to his/her reaction?

III. Cultural issues for Chinese cancer patients

1. What are the main challenges facing Chinese people who are diagnosed with cancer?
2. How would you characterize your interactions with medical professionals (GP,
treatment centre/hospital staff) since the cancer diagnosis?
- Do you use an interpreter when meeting the oncologist?
3. How is cancer understood in the Chinese community?
4. Are there any differences between how cancer is understood in the Chinese
community and Canadian society more broadly?

IV. Conclusion
1. Is there anything else you would like to tell me that we have not already discussed?

151
Appendix G: Semi-structured interview script for Chinese-speaking family
caregiver
I. Experience with cancer
1. How did you first learn of the diagnosis?
2. How did you react when you learned of the news?
3. How did you tell others, family and non-family members? How did they
(family members and non-family members) react?
4. What changes have you noted in (patient) mood and feelings, from the time of
the cancer diagnosis?
5. How has the experience of living with cancer affected his/her (patient) life?
- Physically
- Relationships with family and friends (social/family)
- Emotionally
- Ability to manage day to day living (functionally)

II. Patient-family caregiver relationship

1. What is your experience like in caring for your__ (patient)?
2. How do you respond to the changes you noted in your __ (patient)?
3. What changes have you noted in your mood and feelings, since the time of the
cancer diagnosis?
4. How has the experience of living with cancer affected your life?
- Physically
- Relationships with patient, family, friends
- Emotionally
- Ability to manage day to day tasks

III. Cultural issues for Chinese cancer patients

1. What are the main challenges facing Chinese people who are diagnosed with
cancer?
2. How would you characterize your interactions with medical professionals
(GP, treatment centre/hospital staff) since the cancer diagnosis?
- Do you use an interpreter when meeting the oncologist?
3. How is cancer understood in the Chinese community?
4. Are there any differences between how cancer is understood in the Chinese
community and Canadian society more broadly?

IV. Conclusion
1. Is there anything else you would like to tell me that we have not already
discussed?

152
Appendix H: Descriptive summary of 19 dyads with incomplete information

Variables Combined Group Chinese-speaking Anglophone Group

(n=19) Group (n=7)
(n=12)
Mean (Standard deviation)
Patient distress 4.53 (3.36) 4.82 (3.12) 4.0 (4.0)
Caregiver distress 15.0 (1.41) 14.0 (--) 16.0 (--)
QOL total 86.08 (15.3) 87.88 (14.68) 82.78 (17.27)
Physical well-being 22.53 (5.78) 22.36 (5.8) 22.83 (6.27)
Social well-being 24.02 (3.48) 23.97 (4.12) 24.11 (2.17)
Emotional well-being 19.53 (3.91) 20.0 (3.38) 18.67 (4.97)
Functional well-being 20.0 (5.7) 21.55 (4.13) 17.17 (7.41)
Patient age 56.82 (9.97) 54.91 (8.78) 60.33 (11.94)
Years patient lived in Canada 34.12 (18.82 24.36 (9.88) 52.0 (18.58)
Caregiver age 58.5 (10.61) 66.0 (--) 51.0 (--)
Years caregiver lived in Canada 39.5 (16.26) 28.0 (--) 51.0 (--)
Months of caregiving 16.0 (11.31) 8.0 (--) 24.0 (--)

Counts (percentages)
Male patient 2 (11.8) 1 (9) 1 (17)
Male caregiver 1 (50) 1 (100) 0 (0)
Breast cancer 11 (57.9) 9 (75) 2 (29)
Bladder or colorectal cancer 5 (26.3) 1 (8) 4 (57)
Ovarian, prostate or uterine 2 (10.5) 1 (8) 1 (14)
cancer
Stage I cancer 5 (26.3) 2 (17) 3 (43)
Stage III cancer 5 (26.3) 4 (33) 1 (14)
Patient with high school 7 (41.2) 6 (55) 1 (17)
education
Patient with university or 5 (29.4) 3 (27) 2 (33)
advanced degree
Caregiver with high school 0 (0) 0 (0) 0 (0)
education
Caregiver with university or 1 (50) 1 (100) 0 (0)
advanced degree
Patient with advanced English 8 (47.1) 2 (8) 6 (100)
Caregiver with advanced 2 (100.0) 1 (100) 1 (100)
English
Caregiver a spouse/partner of 1 (50) 1 (100) 0 (0)
patient
Caregiver a child of patient 1 (50) 0 (0) 1 (100)
More than 1 treatment type 12 (70.6) 9 (75) 3 (43)

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 Appendix I: Pearson correlations in combined sample

Variables 1 2 3 4 5 6 7 8 9 10 11 12

1. Patient age -

2. Years patient has lived in Canada .43** -

3. Caregiver age .41** .51** -

4. Years caregiver has lived in Canada .37** .80** .76** -

5. Months of caregiving .12 .21 .16 .08 -

6. Patient distress -.34* -.12 -.23 -.08 -.05 -

7. Caregiver distress -.14 -.12 -.10 -.17 .09 .09 -

8. QOL total .30* .01 .11 -.07 .10 -.80** -.10 -

9. Physical well-being .11 -.01 .05 -.09 .15 -.62** .11 .81** -

10. Social well-being .32* .11 .19 .14 .02 -.54** -.18 .66** .24 -

11. Emotional well-being .45** .03 .12 -.12 .08 -.76** -.06 .85** .66** .41** -

12. Functional well-being .14 -.06 .01 -.12 .04 -.66** -.23 .88** .59** .59** .62** -

*p < .05, **p < .01

154
 Appendix J: Pearson correlations in Chinese-speaking group

Variables 1 2 3 4 5 6 7 8 9 10 11 12

1. Patient age -

2. Years patient has lived in Canada .43 -

-
3. Caregiver age .22 -.11

4. Years caregiver has lived in Canada .42* .41 .50 -

5. Months of caregiving .09 .23 .17 .11 -

6. Patient distress -.16 -.14 -.16 -.001 .003 -

7. Caregiver distress .07 -.39 -.08 -.24 -.17 .08 -

8. QOL total .19 .04 .20 .01 .10 -.75** -.11 -

9. Physical well-being -.11 -.19 .08 -.16 -.02 -.57** -.03 .83** -

10. Social well-being .32 .18 .23 .16 .10 -.57** -.13 .79** .46* -

11. Emotional well-being .34 .09 .26 .08 .07 -.74** -.04 .86** .66** .54** -

12. Functional well-being .14 .09 .12 -.02 .18 -.68** -.18 .93** .69** .72** .75** -

*p < .05, **p < .01

155
 Appendix K: Pearson correlations in Anglophone group

Variables 1 2 3 4 5 6 7 8 9 10 11 12

1. Patient age -

2. Years patient has lived in Canada .70** -

-
3. Caregiver age .63** .35

4. Years caregiver has lived in Canada .60** .39 .84** -

5. Months of caregiving .17 .48 .17 .14 -

6. Patient distress -.48* -.34 -.43* -.35 -.13 -

7. Caregiver distress -.32 -.08 -.17 -.33 .43 0.10 -

8. QOL total .43* .34 .25 .14 .11 -.86** -.10 -

¤
9. Physical well-being .28 .34 .20 .12 .36 -.66** .22 .79** -

10. Social well-being .31 .03 .12 .13 -.11 -.54** -.26 .56* .08 -

11. Emotional well-being .59** .58** .39 .26 .13 -.79** -.09 .85** .64** .39 -

12. Functional well-being .16 .04 .05 -.06 -.14 -.64** -.29 .83** .50* .50* .52** -

*p < .05, **p < .01

156
 Appendix L Bivariate regression coefficients in combined sample

Variable QOL total Physical Social Emotional Functional

well-being well-being well-being well-being
Male patient .04 -.12 .05 .16 .06
(vs female) a
Male family caregiver -.04 -.07 .15 -.13 -.03
(vs female) b
Breast cancer .09 -.001 -.04 -.21 .06
(vs esophagus, lung, lymphoma or nasopharyngeal) c
Bladder or colorectal cancer -.09 .19 .10 .12 -.13
(vs Esophagus, lung, lymphoma or nasopharyngeal) c
Ovarian, prostate or uterine cancer -.06 .02 .01 -.21 .06
(vs esophagus, lung, lymphoma or nasopharyngeal) c
Stage I cancer .09 .07 .10 .06 .06
(vs Stage II cancer) d
Stage III cancer -.05 -.09 -.02 .08 -.13
(vs Stage II cancer) d
Patient with high school education -.10 -.13 -.36* .06 .06
(vs post-secondary education) e
Patient with university or advanced degree -.12 -.18 -.15 -.14 .09
(vs post-secondary education) e
Family caregiver with high school education .05 .02 .18 -.04 .02
(vs post-secondary education) f
Family caregiver with university or advanced degree .02 -.12 .08 .07 .06
(vs post-secondary education) f
Patient with advanced English fluency -.08 -.08 .11 -.22 -.01
(vs. beginner or intermediate) g
Family caregiver with advanced English fluency -.21 -.25 -.01 -.23 -.16
(vs. beginner or intermediate) h
Family caregiver being a spouse/partner of the patient -.03 -.01 .23 -.08 -.19
(vs. extended family/relatives or close friends) i
Family caregiver being a child of the patient -.05 .09 -.09 .004 -.17
(vs. extended family/relatives or close friends) i
More than 1 treatment type .06 .12 .03 -.04 .05
(vs. chemotherapy, drugs, radiation or surgery) j
Note. a = standardized regression coefficient of binary variable for sex of patient. b = standardized regression coefficient of binary variable for sex of family
caregiver. c = standardized regression coefficients of dummy variables for cancer site. d = standardized regression coefficients of dummy variables for cancer
stage. e = standardized regression coefficients of dummy variables for education level of patient. f = standardized regression coefficients of dummy variables for
education level of family caregiver. g = standardized regression coefficient of binary variable for English fluency of patient. h = standardized regression
coefficient of binary variable for English fluency of family caregiver. i = standardized regression coefficients of dummy variables for relationship type. j =
standardized regression coefficient of binary variable for treatment type. *p < .05

157
 Appendix M: Bivariate regression coefficients in Chinese-speaking group

Variable QOL total Physical Social Emotional Functional

well-being well-being well-being well-being
Male patient -.07 -.10 -.14 .12 -.12
(vs female) a
Male family caregiver -.05 -.08 -.02 .01 -.06
(vs female) b
Breast cancer .06 .04 .00 -.28 -.01
(vs esophagus, lung, lymphoma or nasopharyngeal) c
Bladder or colorectal cancer -.07 .09 .20 -.04 -.02
(vs Esophagus, lung, lymphoma or nasopharyngeal) c
Ovarian, prostate or uterine cancer -.09 -.10 .07 -.14 .03
(vs esophagus, lung, lymphoma or nasopharyngeal) c
Stage I cancer .05 .04 .11 -.08 .09
(vs Stage II cancer) d
Stage III cancer -.23 -.37* -.04 -.09 -.18
(vs Stage II cancer) d
Patient with high school education -.27 -.14 -.53* -.13 -.15
(vs post-secondary education) e
Patient with university or advanced degree -.12 -.11 -.24 -.12 .04
(vs post-secondary education) e
Family caregiver with high school education .01 .12 .20 -.13 -.14
(vs post-secondary education) f
Family caregiver with university or advanced degree .15 .19 .21 .90 .004
(vs post-secondary education) f
Patient with advanced English fluency .09 .03 .13 -.04 .19
(vs. beginner or intermediate) g
Family caregiver with advanced English fluency -.19 -.25 -.08 -.13 -.14
(vs. beginner or intermediate) h
Family caregiver being a spouse/partner of the patient .05 .17 .10 .05 -.15
(vs. extended family/relatives or close friends) i
Family caregiver being a child of the patient -.18 -.03 -.19 -.16 -.22
(vs. extended family/relatives or close friends) i
More than 1 treatment type .26 .29 .11 .07 .33
(vs. chemotherapy, drugs, radiation or surgery) j
Note. a = standardized regression coefficient of binary variable for sex of patient. b = standardized regression coefficient of binary variable for sex of family
caregiver. c = standardized regression coefficients of dummy variables for cancer site. d = standardized regression coefficients of dummy variables for cancer
stage. e = standardized regression coefficients of dummy variables for education level of patient. f = standardized regression coefficients of dummy variables for
education level of family caregiver. g = standardized regression coefficient of binary variable for English fluency of patient. h = standardized regression
coefficient of binary variable for English fluency of family caregiver. i = standardized regression coefficients of dummy variables for relationship type. j =
standardized regression coefficient of binary variable for treatment type. *p < .05

158
 Appendix N: Bivariate regression coefficients in Anglophone group

Variable QOL total Physical Social Emotional Functional

well-being well-being well-being well-being
Male patient .13 -.15 .22 .18 .22
(vs female) a
Male family caregiver .02 -.03 .30 -.19 .03
(vs female) b
Breast cancer .11 -.11 -.05 -.23 -.12
(vs esophagus, lung, lymphoma or nasopharyngeal) c
Bladder or colorectal cancer -.16 .26 .02 .24 -.18
(vs Esophagus, lung, lymphoma or nasopharyngeal) c
Ovarian, prostate or uterine cancer -.04 .10 .08 -.28 -.03
(vs esophagus, lung, lymphoma or nasopharyngeal) c
Stage I cancer .13 .09 .09 .17 .05
(vs Stage II cancer) d
Stage III cancer .09 .18 .04 .17 -.11
(vs Stage II cancer) d
Patient with high school education -.01 -.20 -.2 .13 .21
(vs post-secondary education) e
Patient with university or advanced degree -.22 -.30 -.11 -.32 .03
(vs post-secondary education) e
Family caregiver with high school education .04 -.12 .37 -.22 .17
(vs post-secondary education) f
Family caregiver with university or advanced degree -.11 -.41 .01 .00 .09
(vs post-secondary education) f
Patient with advanced English fluency - - - - -
(vs. beginner or intermediate) g
Family caregiver with advanced English fluency -.19 -.21 .09 -.19 -.25
(vs. beginner or intermediate) h
Family caregiver being a spouse/partner of the patient -.06 -.16 .39 -.11 -.20
(vs. extended family/relatives or close friends) i
Family caregiver being a child of the patient .10 .35 -.05 .17 -.20
(vs. extended family/relatives or close friends) i
More than 1 treatment type -.11 -.01 .01 -.16 -.17
(vs. chemotherapy, drugs, radiation or surgery) j
Note. a = standardized regression coefficient of binary variable for sex of patient. b = standardized regression coefficient of binary variable for sex of family
caregiver. c = standardized regression coefficients of dummy variables for cancer site. d = standardized regression coefficients of dummy variables for cancer
stage. e = standardized regression coefficients of dummy variables for education level of patient. f = standardized regression coefficients of dummy variables for
education level of family caregiver. g = standardized regression coefficient of binary variable for English fluency of patient is constant. h = standardized
regression coefficient of binary variable for English fluency of family caregiver. i = standardized regression coefficients of dummy variables for relationship
type. j = standardized regression coefficient of binary variable for treatment type. *p < .0

159