STAGING RELATIONSHIPS: USING DEVISED THEATRE TO EXPLORE
FIRST NATIONS YOUTHS' EXPERIENCES AND PERCEPTIONS OF THEIR
RELATIONSIDPS WITH HEALTHCARE PROVIDERS

by

Julia Petrasek MacDonald
BSc., University ofWaterloo, 2013

THESIS SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SCIENCE
IN
COMMUNITY HEALTH

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
May 2016

©Julia Petrasek MacDonald, 20 16

ABSTRACT
In Canada, vast inequities exist between Aboriginal and non-Aboriginal youth,
especially in northern, rural communities. Research has shown positive relationships with
physicians greatly impacts on health, yet, to date, research on relationships between
healthcare providers and Aboriginal peoples has not widely consulted or involved the
younger population. The goal of this research was to explore relationships between
Nisga'a First Nations youth (ages 19-25) and their healthcare providers by identifying
cultural and social factors that encourage or hinder meaningful access to healthcare.
Using a social determinants of health framework, this research employed communitybased participatory approaches and deco lonizing methodologies as well as arts-based
methods (devised theatre). Four key themes emerged exemplify ing two Nisga'a First
Nations youths' experiences of relationships with healthcare providers. The most
important fmding was that Nisga'a youth participants identified ' relationships' as a
determinant of their interactions with healthcare providers. Furthermore, using theatre
proved to be a successful way to engage youth in research.

11

TABLE OF CONTENTS
ABSTAACT ........................................................................................................................ i
LIST OF TABLES ............................................................................................................ v
LIST OF FIGURES ......................................................................................................... vi
ACKNOWLEDGEMENTS ........................................................................................... vii
CHAPTER 1: INTRODUCTION .................................................................................... !
1.1 Study Objectives and Rationale ............................................................................ 1
1.2 Motivation for pursuing this research ................................................................... 4
1.5 Outline of Chapters ............................................................................................... 8

CHAPTER 2: OVERVIEW OF LITERATURE ......................................................... ll
Part I: The Social Determinants of Aboriginal Peoples Health .............................. 13
2.1 Health Disparities and the Aboriginal Population of Canada ............................. 13
2.2 Aboriginal Youth ................................................................................................ 17
2.3 Social D eterminants of Aboriginal Peoples Health ............................................ 19

Part 0: Aboriginal Encounters with Health Care Systems .................................... 22
Part III: Storytelling and Theatre as Emerging Methods ....................................... 28
2.4 Storytelling .......................................................................................................... 28
2.5 Theatre ................................................................................................................ 30

Conclusion ................................................................................................................... 32
CHAPTER 3: METHODOLOGY AND METHODS ................................................. 35
Part 1: Methodology and Approaches ....................................................................... 35
3.1 Social Determinants of H ealth Framework......................................................... 35
3.2 Community-Based Participatory Research ......................................................... 37
3.3 Decolonizing Methodologies .............................................................................. 44

Part II: Methods .......................................................................................................... 47
3.4 Devised Theatre: A participatory research method and approach ...................... 49
3.5 Research Steps .................................................................................................... 51
3.6 Data Analysis ...................................................................................................... 75

Conclusion ................................................................................................................... 76
CHAPTER4: FINDINGS .............................................................................................. 78
4.1 Disconnect. .......................................................................................................... 78
4.2 When the body speaks- receiving incomplete care ............................................ 82
4.3 Empathy .............................................................................................................. 83
4.4 E mpowerment ..................................................................................................... 87

CHAPTER 5: DISCUSSION ......................................................................................... 91
5.1 Disconnect from providers .................................................................................. 91
5.2 When the body speaks - receiving incomplete care ............................................ 96
5.3 Experiences of empathic and compassionate care ............................................ 100
5.4 Empowering encounters .................................................................................... 103

Conclusion ................................................................................................................. 106
CHAPTER 6: LIMITATIONS, CONCLUSIONS AND FUTURE DIRECTIONS 107
6.1 Limitations, Challenges, and Learnings ............................................................ 107

iii

6.2 Conclusions and Future Directions ................................................................... 11 2
APPENDIX I. NORTHERN HEALTH AUTHORITY SERVICE REGION ........ 116
APPENDIX II. LOCATION OF NASS VALLEY IN BRITISH COLUMBIA ...... 117
APPENDIX III. LETTER OF CONSENT FROM NASS VALLEY ....................... 118
APPENDIX IV. OPEN DIALOGUE QUESTIONS .................................................. 119

IV

LIST OF TABLES
Table 1. Research stages

51

Table 2. Research questions explored during drama workshop

57

v

LIST OF FIGURES
Figure 1. Screenshot of HARC art worksheets.

57

Figure 2. What makes me healthy?

62

Figure 3. Experiences with healthcare providers.

65

Figure 4. First frozen tableau representing ' disconnect. '

70

Figure 5. Second frozen tableau representing 'control. '

71

Figure 6. Final frozen tableau representing 'empowerment.'

72

Figure 7. Words taken from transcript representing youths' experiences.

78

Vl

ACKNOWLEDGEMENTS
First and foremost, to my participants, for sharing your stories and teaching me
To the Nisga 'a First Nation, for welcoming me to the Nass Valley
To the community of Gitlaxt'aamiks, and the staff at the Rcc Centre, for your support and
partnership in this project- it would not have been possible without you
To my supervisor, Dr. Sarah de Leeuw, and my committee members, for your
encouragement and direction throughout the entire process
To Marsha Knight, for your constant help and gu idance in creating the drama workshop1 am truly grateful for your friendship and support
To my parents, Ron and Annemarie, and my sisters, Joanna, Megan and Marta - for your
love and support

ALL THE MATERIALS USED, AND RESULTS OF THE RESEARCH REMAIN THE
SOLE PROPERTY OF THE WILP WILXO'OSKWHL NlSGA ' A

Vll

CHAPTER 1: INTRODUCTION
1.1 Study Objectives and Rationale
Aboriginal (i.e. the descendants of the original inhabitants of Canada) youth across
Canada experience vast health inequalities and significant health disparities, however
measured, compared to non-Aboriginal youth (Adelson, 2005; Peiris, Brown, & Cass,
2008; Reading & Wien, 2009). Aboriginal youth, in particular, are significantly
vulnerable to a variety of socially-determined and biomedical health risks, such as
increased rates oftecn pregnancy, HIV/AJDS, violence, malnutrition and unemployment
(Ning & Wilson, 20 12). One factor in enhancing health outcomes for this population, as
well as more generally for Aboriginal peoples, is the strengthening of relationships
between a patient and their physician. To date, research bas not substantially explored
Aboriginal youths ' use of healthcare services or their interactions with healthcare
providers (Ning & Wilson, 2012). This is surprising given the numbers of studies that
have investigated Aboriginal peoples' experiences with the healthcare system, given that
Aboriginal youth suffer from poorer hea lth than non-Aboriginal youth, and given welldocumented knowledge about the link between positive health outcomes and one's use of
health services and interaction with healthcare providers (Browne, 2007; Ning & Wilson,
20 12). The purpose of this Masters thesis research project was to address this gap in
knowledge and explore two Nisga'a First Nations youths' perceptions and lived
experiences of their relationships with hcalthcare providers in a Nisga ' a First Nation
community in Northern British Columbia. The categorization of bealthcare providers was
purposefully left open so as to allow participants to voice their interpretation of what
constituted a bealthcare provider in their life - such an open ended orientation to

healthcare providers allows participants to orient to the healthcare provider they perceive
having the greatest impact in their life. It is important to note that for participants ', the
term ' healthcare provider' translated as doctor or nurse. This could be read as the power
invested in doctors and nurses, particularly in the imagination and minds of these young
Aboriginal people in northern BC.
The main objectives of this work were thus to:
I. document the Aboriginal youths' understandings of ' health',
2. explore youth perceptions of, and lived experiences with their healthcare
providers,
3. ask Aboriginal youth what they want to say to those who provide health services,
4. devise strategies with youth for the healthcare system and providers that are
consistent with Aboriginal youth perspectives and needs around health, and
5. pilot the use of devised theatre as a youth-led-data-gathering-method to narrate
the lived experiences of Aboriginal youth with current & future bealthcare
providers.
To meet these objectives, a cross-cultural, community-based participatory action
research project informed by decolonizing methodologies was designed and undertaken
in a Nisga'a First Nations community in the Nass Valley region of Northern British
Columbia. The project used devised theatre methods, complemented by an open dialogue,
to gather data with Aboriginal youth participants. As defined by the United Nations
Education, Scientific and Cultural Organization (20 16), 'youth' refers to a person
"between the age where he/she may leave compulsory education, and the age at which
be/she finds his/her first employment" (para. 2) and is thus defined as people between the

2

ages of 19 and 24: youth can also, however, include persons up to the age of 35 years
(United Nations Education, Scientific and Cultural Organization, 20 16). For the purposes
ofthis project, 'youth' was defined as those between the ages of 19 and 25.
The relationship between the Canadian state and the first peoples of Canada is
complex and entrenched in a colonial history of oppression of Aboriginal peoples. While
this will be discussed in more detail in Chapter 2, along with how this history shapes, or
impacts this research project, it is important to mention it at the onset of the thesis,
esp ecially wi th respect to the impact this has on terminology used throughout this thesis.

It is important to note that, "terminology can represent something more than just a word.
It can represent certain colonial histories and power dynamics" (University of British
Columbia, n.d., para. 3). Furthermore, terminology around Indigenous peoples can
' clump' together these peoples and, disregard the diversity between each Indigenous
group around the world. With this in mind, I try to use the most appropriate term when
discussing Indigenous peoples. Throughout this thesis, the term 'Aboriginal' refers to the
descendants of the original inhabitants of Canada, including First Nations, Inuit and
Metis peoples. The term 'First Nations ' is specifically in reference to this Aboriginal
group, and if available, the specific First Nation band will be named. The use of the term
'Indigenous' will refer to Indigenous peoples globally.
Furthermore, throughout this thesis I use the term 'Nisga'a youth' to represent the
Nisga'a youth who participated in this project. It is important to note that in using this
term, I am in no way shape or form generalizing at a community, or even nation level, the
feeling ofyoung Nisga'a citizens. However, having said that, much can be learned from

3

listening deeply and listening with focused attention to stories of people and their
experiences. There is always room to learn from the stories of even one or two people.
Based on extensive background and literature searches, this research is, to my
knowledge, the frrst of its kind in Canada, using as it does an arts-based method to
explore patient-physician relationships between Aboriginal youth and their bealthcare
providers. It is my hope that this work will contribute to documenting Aboriginal youth
perspectives and experiences about health care systems and contribute to the
development of meaningful, culturally-appropriate, youth-relevant strategies to improve
health and wellbeing for Aboriginal youth in Canada - this, may in turn, address
disparities in health.

1.2 Motivation for pursuing this research.
As an individual with interdisciplinary interests, including cross-cultural work,
the social determinants of health, and theatre, I sought a Masters program and a research
project in which I could combine these diverse interests. 1 chose to pursue a Masters of
Community Health that explored First Nations youths' experiences with their healthcare
providers, using devised theatre techn iques. Having participated in a health-focused
cross-cultural youth exchange with Canada World Youth (CWY) in the third year of my
undergraduate degree, I learned the value and importance in working respectfully with
people from various backgrounds and perspectives. In this experience I engaged in
conversations around the differences in access to healthcare resources based on race and
power of certain racialized groups. These discussions were bad with people who brought
different perspectives than my own. By the end of the program I had become very

4

interested in the topic of healthcare inequities from a cross-cultural perspective, and I
recognized the richness of having multiple perspectives to health care discussions.
While it was through my experience with the CWY that I began to learn and
appreciate the impact of social factors on health, it was through a course on the Social
Determinants of Health in my fourth year of my Bachelor degree when I delved into and
began to learn about the complex factors that contribute to the health and wellbeing of
humans, especially those that go beyond biomedical definitions of health. Collectively
these past experiences and studies brought me to an interest in the intersection of health
inequities, social determinants of health, and cross-cultural work. It is important to note
that while the first time I delved into issues of health inequities was in a developing
country, known globally for health disparities, I was aware that health inequities also
exist in my own country, and are especially prominent within Aboriginal contexts and
communities. Indeed, more recently and in a time of Canada's Truth and Reconciliation
Commission and resulting report, it is increasingly understood that non-Aboriginal settler
Canadians MUST take a more active role in understanding the places of privilege from
which we operate and the important role we play in the current landscape of inequalities
lived by so many Aboriginal peoples today (see Truth and Reconciliation Commission of
Canada, 20 15).
My interest in using an arts-based method came from my lifelong passion for
theatre. In 2013 , Tjoined the Kitchener-Waterloo Youth Theatre (KWYT) group, a
theatre company that uses "Devised Theatre" or "Collective Creation" rather than
traditional theatre methods or approaches. This type of theatre includes actors collectively
creating a piece or story and conveying their story through physical movements.

5

Furthermore, each actor brings his or her own lived experiences to the story. I found this
process inspiring, the method profoundly moving, and it resonated strongly with me as a
way to tell a story without (or even beyond) words. Based on my involvement with the
KWYT and my experience with devised theatre, when it came to designing a research
project with arts-based methods, it was a natural fit to bring in this type of theatre to my
research. I felt devised theatre would provide a creative and powerful way for First
Nations youth to tell their stories of experiences with healthcare providers- without the
pressure and constraints of using only words.
It was a pleasure to unite diverse interests into one project and, perhaps more
fulfilling and encouraging, was the discovery of how these seemingly different areas
could be powerfully combined and complement one another to create a unique
environment in which I could explore First Nations youths' experiences of relationships
with their healthcare providers, in Northern British Columbia.
1.3 Northern British Columbia
Northern British Columbia is a unique geography spanning approximately
600,000 square kilometers ofthe province, and approximately 64% of British Columbia's
land base (First Nations Health Authority, 20 15). Northern B.C. is sub-divided into three
regions, including the Northeast, Northwest and Northern Interior regions (Northern
Health, n.d.; University ofVictoria, 201 1). For the purpose of this research, the Northern
Health Authority's definition of Northern British Columbia is used, which, broadly
speaking, is defined as reaching north to the B.C.-Yukon border, west to the BC-Alaska
border, east to the BC-Alberta border, and south, stretching just past Quesnel and
Valemount (Northern Health, n.d.) (see Appendix I).

6

The population ofNorthern British Columbia is approximately 300,000, or 6.5%
of B.C.'s population, with the majority of the population clustering in the Northern
Interior region in the city of Prince George (approx. 70,000 people) (University of
Victoria, 20 11 ). According to the First Nations Health Authority, Northern B.C. is home
to 35.6% of First Nations peoples in the province, with approximately 34% of First
Nations living on-reserve and 54% living off-reserve (First Nations Health Authority,
20 15).

1.4 T he Nass VaUey and the Nisga'a First Nation
T he Nass Valley, situated in Northwestern British Columbia, is home to the
Nisga'a First Nation, people of the Nass River (see Appendix 11). There are four Nisga'a
communities located along the Nass River: Gitlaxt'aamiks, Gitwinksihlkw, L~alts'ap
and Gingolx. This proj ect took place in the community of Gitlaxt'aamiks, formerly
known as New Aiyansh, and home to 1,800 people. The community of Gitlaxt'aamiks is
located lOOkm northwest from the city of Terrace, BC. All members ofthe Nisga'a First
Nation belong to one of four Pdeek (i.e. tribes): The Ganada Clan whose crest is
represented by a Raven/Frog; Laxgibuu Clan whose crest is represented by a Wolfi'Bear;
Gisk'aast Clan whose crest is represented by the Killer Whale/Owl; and the Laxsgiik
Clan whose crest is an Eagle/Beaver (Nisga'a Lisims Government, n.d.). The Nisga'a
First Nation is matriarchal, and therefore, men and women hold memberships in their
mother's clan. The official language of the N isga'a First Nation is Nisga'a (Nisga'a
Lisims Government, n.d.).
Covered with lava beds from a volcanic eruption that occurred over 200 years
ago, the Nass Valley is a unique landscape in British Columbia (Nisga'a Lisims

7

Government, n.d.). The Nisga'a First Nation describes the story of the erupting volcano
through their oral traditions:
Two children were playing by the river, catching salmon and slitting open their
backs. One child slit a salmon's back, stuck a stick into the wound and lit the stick
on fire. The other child slit a salmon's back and stuck a piece of shale into the
wound. As the children placed the salmon back in the water they were amused by
the panic and struggle of the fish. An elder saw what the children were doing and
warned them of their actions saying, "Take care what you do . The salmon will
curse you and the creator will respond kind" (Nisga'a Lisims Government:
Volcano, n.d., para. 3). Shortly after, the ground began to tremble and the volcano
began erupting with lava that covered two communities and killed more than two
thousand people.
This story and the lava beds that cover the Nass Valley to this day serve as a reminder to
the Nisga'a people of those who lost their lives to the volcano, as well as the importance
of respecting the earth and wisdom of the Elders (Nisga'a Lisims Government, n.d.).
Having signed the first modern day treaty in British Columbia's history, the
N isga'a First Nation are self-governing and hold control over their population and their
land. This makes the N isga 'a a unique First Nation in British Columbia. On May 11 ,
2000, the N isga'a Final Agreement was finali zed between the Canadian Government and
the N isga 'a First Nations, marking British Columbia's first modern treaty (Nisga'a
Lisims Government, n.d.). Therefore, the Indian Act no longer applies to the Nisga'a
First Nation. The Nisga'a First Nation is governed by the Nisga'a Lisims Government
(NLG), and each community has a local government. The vision of the NLG is SaytK ' il ' im-Goot: one heart, one path, one nation (Nisga'a Lisims Government, n.d.).

1.5 Outline of Chapters
This thesis details the journey of the research and unfolds in five chapters.
Throughout all of these chapters it is important to note that any generalization of

8

Aboriginal peoples is unintentional, and this thesis is based on the recognition of the
diversity and unjqueness of all First Natjons, lnujt and Metis.
Following from this ftrst chapter, Chapter Two provides an overview of the
literature and includes in-depth discussions on social determinants and Aboriginal
peoples' health, focusing specifically on Aboriginal youth, and also outlines existing
scholarship on Aboriginal peoples' experiences and encounters with healtbcare systems
and personnel in Canada. This discussion ends with a piece on the emergence of
storytelling and theatre methods in qualitative research. The background literature
included in this chapter demonstrates that Aboriginal peoples, both globally and in
Canada, continue to experience an overwhelming burden of health inequities.
Furthermore, Aboriginal peoples continue to be targets of racism and discrimination in
healthcare settings, where Aboriginal peoples have experienced negative and positive
encounters with their healthcare providers.
Chapter Three provides a discussion on my research methodologies, which lay the
philosophical foun dation for this research and for the methods chosen to undertake the
work. The methodologies chosen for this work were based around a social determinants
of health framework and included a community-based participatory research approach
and dccolonizing methodologies. The methods chosen for the project were informed by
the choice of methodologies, and as such are participatory, arts-based methods. The
primary method of data collection was devised theatre, complemented by an 'open
dialogue. '
Chapter Four covers the results from this research. Four themes emerged from the
data and include: disconnect, when the body speaks- incomplete care, empathy, and

9

empowerment. Following the results, Chapter Five discusses the findings of this work at
length while engaging with existing literature. To conclude, Chapter Six outlines the
limitations of this project and highlights overall findings. The conclusion ends with
considerations and recommendations for further research.

10

CHAPTER 2: OVERVIEW OF LITERATURE
In Canada vast health inequities and significant health disparities exist between
Aboriginal peoples compared to non-Aboriginal peoples (Adelson, 2005; Peiris, Brown
& Cass, 2008). Specifically, research has shown that Indigenous youth in Canada and

around the world are significantly vulnerable to a variety of socially-determined and
biomedical health risks, such as increased rates of teen pregnancy, HIV/AIDS, violence,
malnutrition and unemployment (Gracey & King, 2009; Ning & Wilson, 2012;
Worthington et al., 201 0). These risks are particularly heightened by lack of access to and
use of health clinics, in addition to feelings of distrust with healthcare professions
(Browne, 2007; Gracey & King, 2009). Much of the literature cites Indigenous health
disparities as primarily stemming from social, political, cultural and economic inequities
that are rooted in a history of colonialism (Adelson, 2005).
Common to many groups of Indigenous peoples around the world are the effects
of colonization, which can be defmed as "the implanting of settlements on distant
territory" (Said, 1993, p. 8). In Canada, Euro-colonial groups claimed lands now known
as Canada as 'empty, ' literally 'creating the grounds' to forcefully marginalize and
remove Aboriginal peoples from their traditional lands and territories (Castleden, Morgan
& Lamb, 20 I 2). Furthermore, colonial policies and practices were forced upon

Aboriginal peoples in an attempt to assimilate Aboriginal peoples into European society.
These included removal of traditional lands and foods , forced relocation to reserves, the
involuntary attendance of children in residential schools, banning of traditional
ceremonies, and laws that put into place discriminatory and oppressive practices towards
Aboriginal Canadians (Adelson, 2005). The effects of colonialism (those larger set of

11

laws, policies and discursive structures that buttressed the more material act of
colonization, or forced removal of territory) on Aboriginal peoples in Canada, and
Indigenous peoples globally, continues to be profound, impacting their physical, social,
mental, and emotional health and wellbeing (Gracey & King, 2009).
Northern British Columbia is a unique geography in which Aboriginal peoples
have been affected by colonial governments who "literally mapped Indigenous peoples
out of British Columbia and onto Indian reserves" (de Leeuw, Maurice, Holyk,
Greenwood & Adam, 2012, p. 905). This has resulted in First Nations across Northern
British Columbia facing many health disparities that are further affected by lack of access
to health services (de Leeuw et al., 2012). In responding to current health disparities, and
working to enhance health outcomes, it is important to privilege understanding of this
colonial history and how it has influenced Aboriginal perceptions of and relationships
with Western health care practitioners. Indeed, research shows that an important factor in
enhancing health outcomes for Indigenous youth is confident, empowered, culturallyappropriate clinical encounters that increase willingness to access a healthcare
professional and promote positive relationships between patients and their physician
(Browne & Fiske, 2001). Furthermore, as Chandler and Lalonde (1998) found, First
Nations communities with high levels of safe and culturally relevant services experience
lessened risks for youth suicidal ideations. Yet, to date, research on relationships between
healthcare providers and Indigenous peoples has not widely consulted or involved
younger populations.
Gathering youth perspectives and experiences, from a First Nations community in
Northern British Columbia, about health care systems may thus contribute to

12

conversations about the development of meaningful, culturally-appropriate, youthrelevant strategies to improve health and wellbeing for Aboriginal youth and address
disparities in health. Indeed, because this project will be returned to the Nisga'a Nation in
which it was conducted, my hope is that the people who participated in and supported the
work might be able to use this research to extend their calls for equitable and culturally
appropriate health services.
The background to this goal is explored in this chapter, which unfolds in three
sections. Section one is a comprehensive discussion of existing literature examining
health inequities between Aboriginal and non-Aboriginal peoples and the social
determinants of Aboriginal peoples health. Section two discusses Aboriginal encounters
with healthcare systems and section three explores the use of storytelling and theatre as
emerging methods in research with Aboriginal peoples. Together, these three sections
situate this project within an extensive body ofliterature, all of which informed and
contextualized this project. For the purpose of this thesis, the term 'health disparities' is
referring to "those indicators of a relative disproportionate burden of disease on a
particular population" while the term 'health inequity' refers to "underlying causes of the
disparities, many if not most of which sit largely outside the typically constituted domain
of 'health"' (Adelson, 2005 , p. S45).
Part 1: The Social Determinants of Aboriginal Peoples Health
2.1 Health Disparities and the Aboriginal Population of Canada.

Over the past few years, health research globally bas consistently reported
Indigenous peoples suffering from higher rates of infection and disease, and dying much
younger than their non-Indigenous counterparts (Allard et al., 2004; Gracey & King

13

2009). Indeed, Indigenous populations worldwide experience a broad range of health and
social challenges such as high infant and child mortality, malnutrition, obesity and
diabetes, HIV/AIDS, low educational attainment and unemployment (Gracey & King,
2009). For example, the increasing rates of Type II Diabetes in Australian Indigenous
populations has reached an epidemic proportion where nearly 60% of Indigenous peoples
over 35 years old living in the remote northwest have the disorder (Gracey & King,
2009). In addition, rates ofHIV/AIDS are quickly increasing in numerous Indigenous
groups including American Indians, Alaskan Natives, Indigenous African populations,
inhabitants of the Asia-Pacific region (which includes Asia, and countries in the Pacific
Rim) and Aboriginal Canadians (Gracey & King, 2009).
In 201 1, the National Household Survey reported more than one million people in
Canada who identify as Aboriginal (4.4% of the Canadian population), including 851 560
identifying as First Nations, 451 795 Metis and 59 445 Inuit (NHS, 20 II). Collectively
this population suffers from disproportionate burdens of illness and disease compared to
their non-Aboriginal counterparts and experience ' third world conditions of health '
(Adelson, 2005; de Leeuw, Greenwood & Cameron, 2010). Such conditions include low
educational attainment, poor living conditions including over-crowding and underserviced homes, unemp loyment, poverty and increased rates of disease and illness
(Adelson, 2005). Research about health inequities among Aboriginal groups provides
unshakable evidence that health disparities existing between Aboriginal and nonAboriginal peoples are embedded in a history of colonization and poor relations between
Aboriginal peoples and the nation state (Adelson, 2005; de Leeuw et al. , 2012). The
forced relocation to reserves, removal of children from their families to residential

14

schools and racist attitudes towards Aboriginal peoples are only a few factors that
underlie the poor health experienced by Aboriginal Canadians (Adelson, 2005). Among
other pressures and stresses, poor socioeconomic conditions and lack of access to
resources continue to cause additional and significant challenges for the Aboriginal
population (Adelson, 2005).
Furthermore, approximately half of the Aboriginal population in Canada lives onreserve, in the territories or in rural communities (NHS, 2011). Northern, rural and
remote communities in Canada are unique geographies where health inequities are
especially prominent. These communities experience a broad range of health inequities
including decreased life expectancy, higher rates of chronic illness such as diabetes and
obesity and decreased access to health services due to shortage and turnover of health
professionals (Pulla, 2012). Lack of access to resources, in particular access to
healthcare, is especially a barrier for Aboriginal peoples living in more northern, remote
geographies. de Leeuw, Maurice, Holyk, Greenwood & Adam (2012) argued that when
examining and working towards improving Aboriginal peoples health, we must consider
geographical location. The authors noted that "First Nations' poor health can only be
ameliorated if understood as geographically and historically determined, linked to
colonial practices, and associated with dominant systems of social power that spatially
and socially (re)produce Indigenous peoples as perpetually otbered" (de Leeuw et al.,
2012, p.905). Indeed, the implementation of colonial legislation that forced the relocation
of Aboriginal peoples from their land on to government issued land (i.e. reservations) has
bad a tremendous impact on the health oflndigenous peoples (de Leeuw et al., 2012). For
First Nations peoples living on-reserves in Northern British Columbia, factors such as

15

having to travel long distances to get to a healthcare clinic, experiencing racism due to
being from a reserve, and differences in Aboriginal perspectives of health and biomedical
models of health have negatively impacted First Nations peoples health and experiences
with healthcare (de Leeuw et al., 2012). When thinking about Aboriginal peoples health,
then, it is imperative that we as researchers and healthcare practitioners include in our
discussions the impact of physical geographies, such as the impact of being from a
northern, rural, remote community, and socio-imaginative geographies "that racialize
people precisely based on being from an Indian reserve" (de Leeuw et al., 2012, p. 909).
Although there exists tremendous health disparities in the Aboriginal population,
First Nations, Metis and Inuit communities have developed strategies that have enabled
Aboriginal peoples to 'do well' despite the horrific trauma and impacts colonialism has
had, and continues to have, on the Aboriginal population of Canada. To be resilient is to
"do well despite severe hardships, trauma and deprivation" (Kim1ayer, Dandeneau,
Marshall, Phillips & Williamson, 2011, p. 84). Examples from Mi'kmaq, Mohawk, Metis
and Inuit communities have illustrated factors and strategies that have enabled Aboriginal
peoples to 'do well' (Kirmayer et al., 2011). For the Mi'kmaq peoples who come from
Atlantic Canada, some resilience stems from the treaties made with British colonizers,
which have stood as symbols of sharing knowledge and living in peace with European
settlers (Kirmayer et ai., 20 II). For some Mohawk communities in Canada, resilience can
take the form of resisting colonial systems and reasserting control ofMohawk
communities through governing their land and systems (i.e. health services, education,
economic development) throughout Mohawk territories (Kirmayer et al. , 2011). Much
like Mohawk communities, resilience in Metis communities comes from being self-

16

reliant, autonomous and independent by asserting control over their lives and doing
things 'their own way.' For Inuit peoples of Canada, being able to adapt to social
environments influenced by southern practices and policies, responding to the shift in
Arctic climate, and maintaining a connection with the land and mother earth have all
contributed to resilience of the Inuit (Kirmayer et al., 20 11). Importantly, all groups
mentioned above are simi lar in that resilience, broadly speaking, is rooted in the
continuation of traditional knowledge, practices and values (Kirmayer et al., 2011).
2.2 Aboriginal Youth
Among the demographics most vulnerable to poor health and socioeconomic
conditions, including increased rates ofHJV/AIDS and low educational attainment, are
Aboriginal youth in Canada (Ning & Wilson, 2012). According to Statistics Canada's
2011 National Household Survey, youth make up a substantial proportion and fastest
growing group of the Canadian Aboriginal population with almost 50% of the Aboriginal
population under the age of24 (NHS, 2011). Research has shown this young population
faces higher rates of disease and illness compared to non-Aboriginal youth (Ning &
Wilson, 2012). Although health research with Aboriginal peoples continues to stress the
importance of understanding health and wellbeing from a social determinants of health
perspective, literature pertaining to the health of Aboriginal youth fails to address many
ofthe 12 key determinants outlined by the Public Health Agency of Canada (Ning &
Wilson, 20 12). These 12 key determinants include: income and social status, social
support networks, education and literacy, employment/working conditions, social
environments, physical environments, personal health practices and coping skills, healthy

17

childhood development, biology and genetic endowment, health services, gender, and
culture ("Public Health Agency of Canada", 2011).
However, recent research has begun to turn to Aboriginal youth voices to
understand how this demographic understands and experiences health. A study done by
Isaak and Marchessault (2008) with First Nations adults and youth in a Northern First
Nations community in Manitoba collected infonnation on the perspectives of what
'health' means to Aboriginal youth. The authors noted that although health statistics of
Aboriginal youth are documented, First Nations peoples, specifically youths'
understanding of these diseases, bas been overlooked (Isaak and Marchessault, 2008).
Isaak and Marchessault (2008) explained that Aboriginal youth have showed interest in
being part of conversations around the implementation and effectiveness of progran1s
aimed at health promotion. Using a qualitative methods approach, the authors conducted
in-depth interviews with First Nations adults and focus groups with First Nations youth to
explore both the old and young's understandings of health. Interestingly, both adult and
youth participants described health as having emotional, spiritual, physical and mental
components, reflecting the teachings of the Med icine Wheel. Although some youth did
not directly reference the Medicine Wheel, it was clear that Aboriginal youths'
understandings and perspectives of health include the interconnectedness of mental,
spiritual, physical and emotional (Isaak and Marchessault, 2008).
Although research has begun to include the younger Aboriginal population in
discussions around health, to date, research has not substantially explored Aboriginal
youths' use of healtbcare services or their interactions with healthcare providers (Ning &
Wilson, 20 12). This is surprising given the numbers of studies that have investigated

18

Aboriginal peoples experiences with the healthcare system more generally, given that
Aboriginal youth suffer from poorer health outcomes than non-Aboriginal youth, and
given that the link between use ofhealth services/interaction with healthcare providers
and positive health outcomes has been well-documented (Allan & Smiley, 2015; Browne,
2007; Browne & Fiske, 2001; de Leeuw et al., 2012; Ning & Wilson, 2012; Gracey &
King, 2009).

2.3 Social Determinants of Aboriginal Peoples Health
Over recent years, attention has been given to the important role the social
determinants of health (SDoH) play in understanding health inequities (Marmot et al.,
2008; Raphael, 2009). Social determinants of health include, but are not limited to:
income, education, unemployment, housing, and early childhood development. Indeed,
the SDoH allow one to understand how systems and structures can influence health, by
acknowledging the link between health and the social context in which one lives (Marmot
et al., 2008). In 2008, Marmot and his colleagues summarized key fmdings and
recommendations in a report for the Commission on Social Determinants of Health, in
which they called for urgent action by governments, civil society, communities,
businesses, and international agencies to address the wide gap in health that exists around
the globe. The authors explained how health inequities primarily stem from unequal
allocation of power, income, resources and services within countries. Indeed, research
has shown that people in a lower SES bracket have poorer health than those with a hjgher
socioeconomic status (Marmot et al., 2008). The social determinants of health take into
account the wider social, political and economic conditions that people live in, and how
these circumstances affect people' s health: "Social determinants foci move away from

19

genetic or biomedical inquiries and instead examine why some people and communities
are more prone to health deficits, or suffer more severely from their outcomes, as a
function of social contexts" (de Leeuw, Greenwood & Cameron, 2010, p. 285).
Recently, literature pertaining to Aboriginal people's health has stressed the
importance of using social determinants of health to understand inequities experienced by
Indigenous peoples that underlie their health (de Leeuw, Greenwood & Cameron, 2010;
Marmot et al., 2008; Nelson, 2012; Reading & Wien, 2009). Although understanding
health from a SDoH perspective has been widely accepted by Indigenous peoples and
communities, in part because it reflects values of a holistic understanding of health and
wellbeing, the academic SDoH framework requires critical examination as it also risks
representing a 'Western' model of understanding how health is determined. The SDoH
model may not necessarily encompass Indigenous approaches and perspectives of health
and could further perpetuate inequalities and the dominance of white, European settler
systems (Czyzewski, 2011). Many Indigenous authors have thus identified 'distal'
determinants of Indigenous peoples health, such as the impacts and roles of colonialism,
a process that has played a significant part in shaping the circumstances leading to poor
health outcomes of Aboriginal peoples past and present (Reading & Wien, 2009;
Richmond & Ross, 2009; Smylie, 2009). Czyzewski (2011) offered a comprehensive
discussion about the importance of including colonialism as a distal determinant of
Indigenous peoples health, using examples of how discourses around mental health
perpetuate and reinforce colonialism. For example, Czyzewski (2011) explained how
literature on mental health of Aboriginal peoples does not take into account the role that
culture plays in mental wellness. Rather, the majority of literature blames mental illness

20

on the "disordered Aboriginal," a concept that comes from anthropologists',
psychologists' and psychiatrists' idea that Indigenous peoples are unable to "deal with
their problems." This further perpetuates othering and racialized stereotypes, according to
Czyzewski. In addition, intergenerational trauma, caused by colonial processes such as
residential schools, continues to impact the mental health and wellness of Aboriginal
peoples. Indeed, scholarship has explored the ways in which colonialism acts as a distal
determinant of health that continues to produce poor socio-economic conditions. In
addition, and as mentioned above, colonialism elicits a discourse around mental health
that blames Indigenous individuals rather than understanding their wellness as being
affected by social, economic and political contexts, which have been shaped by a history
of colonial practices (Czyzewski, 2011 ). Colonialism is addressed in this research
through use of community-based participatory methods, decolonizing methodology, and
methods informed by these approaches, which are discussed in Chapter three.
Other authors have also explored determinants of health specific to Aboriginal
peoples. Richmond and Ross (2009) explored determinants of first Nation and Inuit
health in rural and remote communities, and discussed ways in which environmental
dispossession has affected these determinants. The authors argued that environmental
dispossession (i.e. processes such as colonialism that removed Aboriginal peoples from
their traditional land) has negatively affected Indigenous peoples wellbeing and is
essentially at the heart of social and health inequalities between Aboriginal and nonAboriginal peoples (Richmond & Ross, 2009). Through interviews with 26 Community
Health Representatives, six determinants of health were uncovered: balance, life control,
education, material resources, social resources and environmental/cultural connections.

21

Interestingly, al l health determinants except cnvironmentaVcultural connections aligned
closely with the Canadian model of health determinants. Participants defined
environmentaVcultural connections " less categorically than other determinants and more
so as a process defining people's abilities to draw resources from the environment in the
maintenance of culture and way of life" (Richmond & Ross, 2009, p. 407). These authors
found that environmentaVcultural connections impact the other health determinants listed.
For example, the reduced consumption of traditional foods and decrease in activities such
as gardening and cutting wood have negatively impacted Aboriginal peoples physical and
spiritual health, which arc part of the health determinant ' balance' and encompasses the
four aspects of the medicine wheel (Richmond & Ross, 2009). With this in mind, the
foundation of this research drew from a social detem1inants of health approach, to
acknowledge and encompass broader determinants that impact Aboriginal peoples health,
such as environment/cultural connections, and colonialism. This will be further discussed
in the methodologies chapter of this thesis.

Part II: Aboriginal Encounters with Health Care Systems
The importance to well-being of the patient and bealthcare provider relationship
has been consistently discussed in social science and medical literature, especially over
the past 50 years (Roter, 2000). As B ellin (2002) noted, "the physician-patient
relationship is as old as medicine itselr' (p.450). The ruling principle of medicine, since
the time of Hippocrates, bas been to 'do no harm .' This criterion bas been the guiding
principle of the patient-physician relationship, and influenced a 'paternalistic' nature of
this relationship, with physicians representing a 'father' like figure that stands above his
children, and the children obeying his orders (Hellin, 2002). In the past 40 years, the

22

patient-physician relationship has evolved from a paternalistic model to a more patientcentered model. This includes the patient and physician in relationship as equals, both
making decisions, and the patient taking ownership over their health (Kaba &
Sooriakumaran, 2007). As Shaw, Ibrahim, Reid, Ussher & Rowlands (2009) noted, "the
quality of the doctor-patient relationship can affect diagnosis, treatment and recovery"
(p.114). Having a good relationship with one's physician is especially important in
maintaining one's health and wellbeing. Indeed, a positive relationship with one's
physicians leads to improved health outcomes (Shaw et al., 2009).
In Canada, there exists a history of"discriminatory practices, unjust laws and
economic or political disadvantage" (Adelson, 2005, p. S46) towards Aboriginal peoples,
taking the form of forced relocation of Aboriginal peoples to unfamiliar land, the
implementation of the residential school system, cultural and linguistic assimilation of
Aboriginal peoples into Canadian settler society, and the implementation of the Indian
Act in 1876 (University of British Columbia, 2009). Indeed, Aboriginal Canadians are
still affected by the trauma caused from historical relations with the nation state,
including loss of traditional lands, forced relocation to reserves, the involuntary
attendance of children in residential schools, and discriminatory and oppressive attitudes
towards Aboriginal Canadians (see Truth and Reconciliation Commission of Canada,
20 15). Furthermore, racism and discriminatory attitudes continue to manifest in relations
with Aboriginal peoples, particularly in the context of healthcare settings (Allan &
Smiley, 2015) where medical institutions continue to represent a colonial past and
present. The term 'colonial present' is used to recognize that the effects and 'actions' of
colonizers are still prominent and occurring today (O'Neil, 1989). Racism takes the form

23

of longer wait times, fewer referrals and disrespectful treatment (Browne & Fiske, 2001).
What's more, racism directly impacts health; research has shown that reactions to racism
cause "racial battle fatigue", a stress response to cope with continuing discrimination
(Allan & Smylie, 2015).
The Non-Insured Health Benefits (NIBH) program is an example of how racism
manifests towards Aboriginal peoples within the Canadian healthcare system. This racebased legislation is a health insurance program offered only to those First Nations and
Inuit who hold "Indian Status" cards. Non-status and Metis people are excluded from this
insurance program, even though they face the same health inequities as those First
Nations and Inuit who have access to the program (Allan & Smylie, 2015). What's more,
access and funding for some services provided by the NIBH require on-reserve residency,
with a constant shifting of funded medications and services (Allan & Smylie, 2015).
Cass et al. (2002) explored factors that affect communication between Australian
Aboriginal patients with end-stage renal disease and their healtbcare providers. The
authors described how there is a gap in research about the degree of miscommunication
present in clinical situations and the consequences that arise from this miscommunication
(Cass et al., 2002). The goal of their research was to observe communication between
Aboriginal patients and non-Aboriginal staff in a dialysis unit to understand dynamics of
intercultural communication. The authors found many factors influencing communication
between staff and patients. Interestingly, many factors are common to aspects influencing
miscommunication in Canadian bealthcare contexts. One aspect that bas been cited in
literature about communication with Aboriginal peoples in Canada and their bealtbcare
providers is how discourse in bealthcare settings is dominated by a western biomedical

24

model. For example, Cass et al. (2002) explained how healthcare providers left no
opportunities for Aboriginal patients to discuss their own understandings and approaches
to health.
Research has shown that development of effective cross-cultural communication
is a long process. Physicians' changes in understanding of Aboriginal culture do,
however, lead to better communication and relationships between physicians and
Aboriginal patients, information important for physicians working with Aboriginal
communities (Kelly & Brown, 2002). Achieving cultural understanding and a good level
of communication requires a long-term process and constant interaction with Aboriginal
patients that brings many opportunities for learning experiences. Physicians have noted
that the journey towards a better understanding of Aboriginal patients, despite being
time-consuming and complex, is rewarding and transformative (Kelly & Brown, 2002).
The term 'cultural competence' has garnered attention in recent years, and has
become important in reducing healthcare disparities experienced by Aboriginal peoples
(Kirmayer, 20 12). Cultural competence is defmed by Betancourt et al. (2003) as "the
ability of systems to provide care to patients with diverse values, beliefs and behaviours,
including tailoring delivery to meet patients' social, cultural, and linguistic needs" (p. v).
Cultural competence seems to be optimally developed through "experiential and
reflective learning- both in the context of [medical] students' clinical training and
personal life experiences" (Sinclair et al., 2016, p. 12). This was seen in a cultural
immersion experience of two medical students in Northern British Columbia. In a
reflective article by medical students Klopp and Nakanishi (2012), the students discussed
their experience of being immersed in the First Nations communjty ofNak'azdli in

25

Northern BC and the "merit" of having knowledge and understanding of other cultures
that these kinds of experiences offer. Through this experience, medical students reflected
on their own assumptions and perceptions of First Nations peoples, and realized that
"cultural immersion is not only meaningful, but that the experiential learning that cultural
immersion provides results in heightened attainment of cultural competence" (p. 128)
Similarly, nursing practices have begun to include cultural immersion as part of
the nursing curricula, with the objectives of developing a higher degree of cultural
competence. Morgan and Reel (2003) discussed their successes in immersing nursing
students in rural cultures in the United States through community collaboration. The
authors discussed the value of community participation and collaboration when doing
community assessments to identify needs of a rural community. Designing medical
school curriculum that includes experiential and reflective learning is one way to foster
and develop medical practitioners who bring understanding of the role culture plays, and
with that, cultural competence. Indeed, having deeper knowledge and understanding of
culture, bearing in mind that cultural competence "engenders the belief that certain
groups of people have the same, shared cultural meanings" (Klopp and Nakanishi, 2012,
p. 128), is important for healthcare providers to develop a compassionate and empathetic
relationship with patients, and communities.
Additionally, patient-provider relationships have been situated within wider
sociopolitical contexts, shaped by social and historical relations. For instance, Browne's
(2007) discussion engages with the sociopolitical context of nurses ' encounters with First
Nations women in a Western Canadian hospital. These encounters, Browne (2007)
argued, are shaped by a historical past of colonialism, oppression and power imbalances

26

between Aboriginal Canadians and the nation state. Other recent research in Australia bas
documented clinical encounters between Aboriginal peoples and their non-Aboriginal
healtbcare providers and has found many factors, such as poor communication,
stereotyping, and othering as contributing to negative interactions and relationships
between Aboriginal patients and their healtbcare providers (Cass et al., 2002). In
addition, research bas shown that many Aboriginal patients feel dismissed by nurses and
doctors, as well as feeling their concerns are not heard or acknowledged by bealthcare
providers (Browne & Fiske, 2001). The result of these negative encounters is ongoing
marginalization and discrimination towards Aboriginal peoples, perpetuating distrust
towards the bealtbcare system (Allan and Smiley, 2015; Browne & Fiske, 2001;
Galloway 2014).
Although research bas evidenced primarily negative encounters of Aboriginal
peoples with health systems, affirming encounters have also been documented. Much can
be learned from these. Research involving First Nations women has shown that affirming
encounters include Indigenous patients being actively involved in making decisions
around their health and explaining feelings of being accepted and cared for by physicians
and healtbcare workers respecting culture, and identity and having a good long standing
relationship with a health care provider (Browne & Fiske, 2001 ). Documenting positive
encounters with healthcare providers is important. It will inform healthcare practitioners
about understanding what kinds of processes and patient-physician relationships are
meaningful to Indigenous peoples in healthcare systems and delivery. Still, while many
researchers have shifted their focus to working with communities to identify strategies
and solutions in hopes of improving these encounters, there has been no signjficant or

27

positive change that I am aware of. Considerable challenges remain (A llan & Smiley,
2015). Furthermore, research may benefit from new methods, anchored in arts-based
approaches, such as storytelling and theatre, to enable in-depth narration of lived
experience. This is especially the case for young people, whose voices are so lacking in
the research.

Part III: Storytelling and Theatre as Emerging Methods
2.4 Storytelling
Arts-based methods are increasingly being used by researchers who work with
Indigenous populations and who intentionally seek to decolonize their research process
(see Willox, Harper & Edge, 2012; Goulet et al., 2011). Creativity and art have been cited
as promising tools to address persistent health inequities that exist between Aboriginal
and non-Aboriginal peoples. Practitioners (i.e. researchers, physicians) moving away
from solely 'biomedical' models of understanding health and turning towards more
comprehensive approaches, such as the social determinants of health, may be one means
of deploying arts based methods (Muirhead & de Leeuw, 2012). Included in these
alternative approaches/ways of thinking about health is an idea about the connection
between art and well ness. ln Canada, the inclusion of art in healing and health may be
particularly significant to Aboriginal peoples, especially because before European settlers
arrived in Canada and attempted to diminish Aboriginal peoples of their sociocultural
practices, traditional cultural activities included many creative and artistic expressions
(i.e. drumming, dancing, basket making, carving) (Muirhead & de Leeuw, 2012).
Storytelling, specifically, has been cited as a form of identity and resilience for
Indigenous peoples. It is a way of passing on stories from their culture, and acts as a

28

source of "knowledge, wisdom, and affirmation of identity" (Kirmaycr et at., 2011, p.
86). Bird et at. (2009) noted however, that there is a gap in literature representing
Indigenous voices, especially in research around healthcare and health promotion, as well
as "a lack of methodological exploration of the ways in which qualitative research
strategies include Indigenous peoples" (p. 18). The authors explored the use of
storytelling and narratives as qualitative methods to understand Inuit people's
experiences living with diabetes (Bird et at. , 2009). Participants were encouraged to tell
their story of living with diabetes. One storyteller's experience was used to demonstrate
various methodological issues that arise when using qualitative research to explore
people's personal experiences (i.e. in this case with diabetes). The authors present four
methodological considerations about using storytelling: 1) using participatory research
methods, ensuring equity through all stages of the research 2) presenting narratives rather
than solely interpreting narratives 3) including aspects of culture, language and place
when interpreting narratives as these aspects are not separate from peoples experiences

and, 4) using multiple methods of analyses (i.e. including participants in the data analysis
process to ensure the data has been presented accurately) (Bird et al., 2009). Bird et al.
(2009) argued that addressing the four points above will increase rigor and
trustworthiness, thus improving qualitative narrative analyses. There are important
factors to consider when conducting qualitative research. They are especially pertinent to
storytelling with Indigenous peoples using a participatory approach and suggest including
narratives verbatim rather than just through interpretation. Bird et al 's. (2009) suggestion
also enforces taking into account wider contexts in which Indigenous peoples live and
using multiple methods of analyses. This was informative to my own thesis work, as the

29

main data-gathering method employed was a form of storytelling, through theatrical
means.
Other research has shown links between storytelling and personal empowerment.
Storytelling can provide a means of healing and transformation, confidence building,
reconnecting with one 's iden6ty, group building, promoting a sense of belonging, and
drawing courage and inspiration from other stories (Williams, Labonte & O' Brien, 2003).
In addition, storytelling within a group or community has the capacity for people to
reconnect with their cultural identity as well as "strengthen new communal narratives that
challenge dominant narratives, and to (re)construct communities as empowered rather
than disempowered collectives." (Williams, Labonte & O' Brien, 2003 , p. 36).
Furtbem1ore, the use of art has increasingly been called into the education of physicians,
which has been noted to have the potential to "enhance empathy, perspective-taking, and
openness to different viewpoints, and to prompt reflection on self, others, and the world"
(Kumagai & Wear, 2014, p. 973). Given this research explores patient-healthcare
provider relationships, arts-based methods anchored in creativity make good sense.
Theatre was chosen as the main data gathering method, and is discussed in the next
section.

2.5 Theatre
Building from the use of storytelling in scholarship, recent research has begun to
use other creative arts-based methods, such as theatre, which has proved to have great
potential as a tool to create a space for Indigenous peoples to address health issues in
their communities (Goulet eta!., 2011 ). The dramatic arts, more specifically acting and
theatrical creations, are one such arts-based method. Indeed, theatre has long had a

30

history of being used in a political context. In his book, Theatre of the Oppressed,
Augusto Boal (1979) argued that theatre was used, and is still used today, as a function to
increase social awareness of structural oppression in many societies. Specifically, Boal
(1979) draws on examples from Aristotelian theatre and Greek tragedy to illustrate bow
theatre was a tool for elite classes to assert power and control over the public by
excluding those in lower social classes from the arts. While oppressive forms of theatre
still exist, there has been movement towards theatre as a tool for personal empowerment
and social change (Boal, 1979). Such a movement was started by Boal himself, among
others. Through his development of Theatre ofthe Oppressed, Boal introduced "forum"
and "image theatre" as instruments to evoke liberation. This participatory and interactive
form of theatre enables the actors and audience members to produce a theatrical space
and time in which to fight against representations of oppressive forces that are present in
their everyday lives (Mienczakowski, 1995). Boal's work is still very relevant today. His
theatre methods are used in research to engage and empower people, especially youth,
and to produce spaces to tell stories of their lived realities and work through social and
personal issues and to devise strategies and solutions (Conrad, 2004; Day, 2002; Rutten
et al., 2010). For instance, Goulet et al. (2011) developed a series of theatre workshops,
based on Boat's Theatre of the Oppressed, working with Aboriginal youth so they could
tell their stories about the socio-cultural aspects of health. These workshops were aimed
at creating a safe space "where youth are asked to think for themselves, to use their
bodies and to exercise their imaginations in making decisions for action" (Goulet et al.,
2011, p. 89). The stories developed by Aboriginal youth revealed that various factors,
including forces of social control in and outside of communities, continue to constrain

31

youth, and, more significantly, that youth do not believe they are able to be agents to
effect change (Goulet et al., 2011 ).
Not only does theatre provide an active, participatory approach to research (see
Conrad 2004), it also ensures that participants have the opportunity to contribute their
own voices and stories of lived experience. In this way, participants have a chance to
create a story that narrates the social, health-related, educational, cultural, political,
economic, and personal confinements or strains that impact their lives and engage in
honest discussion around these issues in search of a solution. Thus, models of theatre
(such as Theatre ofthe Oppressed) break out of the conventional limits of 'traditional
theatre' by opening the process of play building and having participants create a story.
This challenges the colonial roots embedded in society and enabling self-empowerment
and agency. Devised theatre, a similar form of theatre to Theatre of the Oppressed, was
chosen as the main data gathering method, and will be further discussed in Chapter three.
Conclusion
Research over the years has consistently shown that Indigenous peoples suffer
from lowered health status as compared with non-Indigenous peoples (Adelson, 2005,
Gracey and King, 2009). In Canada, Aboriginal peoples living in northern, remote
geographies are especially affected by health inequities, such as lack of access to and use
of healthcare services (de Leeuw et at. , 20 12). These health inequities have been, and
continue to be, rooted in a history of colonialism that continues to affect the health and
wellbeing of Aboriginal peoples. Due to this history, now more than ever, research
methodologies and methods about Indigenous realities must address the profound impact
that colonialism has had, and continues to have, on Indigenous peoples and communities

32

(L.T. Smith, 1999). In the past, research around the health of Indigenous peoples has
been misrepresentative and results have not reflected Indigenous perspectives or
experiences (Castleden et al., 2012). Research with Aboriginal peoples must use
approaches, such as community-based participatory research, which seek to address the
colonial legacy embedded in research practices, and thus address the power imbalances
present between researchers and their subjects (de Leeuw, Greenwood & Cameron,
2012). There are increasingly many ways of doing this. Community-Based Participatory
Research tries to ensure community ownership and involvement in all stages of the
research process and recognizes Indigenous peoples' knowledge and insight. It
acknowledges them as equal partners in the research process (Castleden et a!., 20 12).
As mentioned above, when working toward understanding Indigenous health, it is
imperative that researchers acknowledge how colonialism has shaped, and continues to
shape, the overall wellbeing of Indigenous communities. Decolonizing research moves
away from 'Western ' models/ approaches to research, and privileges Indigenous
"perspectives, processes and ways of knowing and learning" (Bartlett, Iwasaki, Gottlieb,
Hall & Mannell, 2007, p. 2376). It is important to note that, while Boal's method of
theatre was influenced by "Western" approaches (i.e. Greek Tragedy and Aristotelian
Theatre), the creative element of theatre makes it holistic, not favouring rational modes of
being, but rather making room for spiritual, imaginative, and relational modes of being
that coincide with Indigenous perspectives. Research processes must honor Aboriginal
knowledge development. Research processes must also privilege narratives of lived
experience rather than collection of facts/data that are translated into ' non-personalized '
knowledge. Indeed, when doing research with Indigenous peoples, it is Indigenous

33

experiences, perspectives, and insights about research questions and objectives that are at
the core of research processes and part ofthe driving force when partnering with
Indigenous peoples and communities around research activities. As such, all
methodolog ies and data gathering methods employed in this project have been chosen
with a decolonizing methodology in mind, and will be discussed in the next chapter.

34

CHAPTER 3: METHODOLOGY AND METHODS
Part 1: Methodology and Approaches
In this research, the term 'methodology' refers to the theoretical and philosophical
foundations on which this research is built. Three main philosophical tenants, or
methodologies, frame the way this research was undertaken. I discuss these below,
interweaving the discussion with thoughts about the ways these methodologies inform
and are actualized in my own research project.

3.1 Social Determinants of Health Framework
As mentioned in previous chapters, a social determinants of health framework
informs this work. The social determinants of health are "the economic and social
conditions that shape the health of individuals, communities and jurisdictions as a whole"
(Raphael, 2009, p. 2). The social determinants of health, as a way of understanding health
outcomes, have a long history despite its more recent ascendance in mainstream
conversations about human well-being. In the mid-1800's, Friedrick Engels examined
how poor housing, clothing, diet, and lack of sanitation was directly related to infections
and diseases, causing premature death in the working class (Raphael, 2009). Since then,
research has begun to develop around health inequities and the impacts social, economic,

political and cultural factors play in these inequities (Raphael, 2009). It is no longer a
normative, unquestioned practice to consider health as purely biomedical and
behaviourally based (Marmot et al., 2008). Rather it has become widely accepted as
imperative that health be understood broadly and holistically, as not just the absence of
illness, but encompassing social and economic factors including but not limited to: living
conditions, income, availability and quality of education, and access to healthcare

35

services (Raphael, 2009). The social determinants of health seek to address inequities in
allocation and distribution of economic and social resources, and as such, attention is
given to economic and social policies as a way of addressing inequities (Raphael, 2009).
When considering the poor health realities of Aboriginal peoples in Canada, and
Indigenous peoples worldwide, historical and contemporary realities that have shaped
Aboriginal peoples health and wellbeing should be accounted for. Indeed, in order to
fully understand the interconnected web of factors associated with health, and how the
past and current social standing of Aboriginal peoples connects to health, we must
expand the very ' defmition' of health (Smylie, 2009). The National Aboriginal Health
Organization (2007) outlined a list of broader determinants of health specific to
Aboriginal peoples including colonization, globalization, migration, cu ltural continuity,
access, territory, poverty, and self-determination . Specifically and notably, the ongoing
effects of colonization, including forced relocation from traditional lands, cultural and
linguistic assimilation, and impacts of interpersonal and institutional racism, continue to
negatively affect Aboriginal peoples' health . Indeed, the impacts of colonization have
been identified as " important determinants oflndi genous peoples hea lth" (Smylie, 2009,
p. 282).

My own exploration of First Nations youths' experiences and perspectives on
health and their relationships with healthcare providers makes an effort to include and
consider the traditional social determinants of health (see Marmot 2009 and Raphael,
2009). This research also goes further by being cognizant of other determinants specific
to Aboriginal peoples health (Smylie, 2009; Reading and Wien, 2009). A social
determinants of Aboriginal peoples health ' framework ' further complements other

36

methodologies chosen to inform this work, including community-based participatory
research and decolonizing methodologies, which are explained in the following
paragraphs.

3.2 Community-Based Participatory Research
A community-based participatory research (CBPR) approach was important for
this work. CBPR enables researchers to build a level of communication and trust with
participants, creating a research-participant relationship that can faci litate a dialogue to
bring forward first person stories that may identify determinants of health specific to
patient-healthcare provider relationships. As such, CBPR approaches compliment the
SDoH framework also chosen as a methodology for this research. Literature bas
characterized community-based participatory research as:
A collaborative process that equitably involves all partners in the research process
and recognizes the unique strengths that each brings. CBPR begins with a
research topic of importance to the community with the aim of combining
knowledge and action for social change to improve community health and
eliminate health disparities (as cited in Minkler, 2005, p. ii3-ii4)
Many researchers favour CPBR methodologies in their work as it provides an ethical
means of conducting research and promotes co-learning and bi-directional research
(Minkler, 2004; Wallerste in & Duran, 2006; Castleden et al., 2012; de Leeuw,
Greenwood & Cameron, 20 12). Community-based participatory research does not focus
on a specific set of research methods or techniques, but rather places emphasis on the
researcher-community relationship and reaching goals of social change (Wallerstein &
Duran, 2006).
There are many values in using a community-based participatory approach in
health research, especially with marginalized or oppressed populations (Castleden et al.,

37

20 12). First and foremost, a CBPR approach is committed to developing a research
question that "reflects ... issues of real concern to community members" (Minkler, 2005,
pg. ii5). This means that, ideally, the research question comes from the communi ty
involved, and the community then seeks partnerships with outside researchers. In
addition, CBPR examines costs and benefits of the research project on the community.
For example, in keeping with CBPR's value towards equitable partnerships and capacity
building within commuojties, it is important to consider factors such as method
appropriateness to communities and opportullities for training and capacity building for
the partner communities (Minkler, 2005). Although my own research did not begin with a
research question from a First Nations community, partnerships were only made with
communities interested in the research topic and chosen methods (i.e. devised theatre),
ensuring the research was meaningful to the participating cornmuruty.
Another strength of CBPR is its opportunity to uncover local knowledge critical
to better understanding of questions being asked. For example, using a CPBR approach in
conducting a study in India investigating high rates ofHIV/ AIDS among men in the
industrial area ofNandesari, researchers began to understand through local partnerships
and ' insider knowledge' that causes of high rates ofHIV/AIDS were associated with
unprotected sex due to fa lse information believed by men in this region (Shah, 2004).
Due to ' insider' knowledge and guidance of local partners, which included male village
health workers, the research was strengthened and led to subsequent meaningful
interventions to provide correct information to men in the region (Shah, 2004).
Other values and strengths of a CBPR approach include increasing community
trust and ownership through gaining approval of the project from community leaders (de

38

Leeuw, Greenwood & Cameron, 2012). This leads to better recruitment and retention of
participants and higher quality of data due to participant and community involvement in
the project. Furthermore, CBPR improves accuracy when analyzing data and findings
through participant and community involvement in data analysis stages of the research.
Including participants and community partners in data analysis ensures that the
knowledge provided by the community is represented accurately and truthfully, leading
to better-developed and richer themes. This research aimed to explore stories of First
Nations youths' experiences with their healthcare providers, a question that could only be
answered through meaningful, collaborative and active participation by the youth
participants and community involved. Based on the strengths of a CBPR approach
discussed above, my research sought to include as many aspects of CBPR as possible,
keeping in mind the challenges in using such an approach. With that in mind, a
discussion about the challenges and pitfalls of CBPR follows, highlighting the challenges
faced in my own research.
While community-based participatory research can be a valuable and ethical
approach to conducting research, there are also challenges in using this methodology.
Wallerstein and Duran (2006) have written extensively on the pitfalls of using CBPR. A
summary of their critiques follows throughout this next section.
As mentioned above, one value in using a CBPR approach is having a research
question driven by the community. However, this can become a challenge as most
research projects are driven by those in privileged positions (i.e. academia), who have
extensive resources and time to produce their work (Wallerstein & Duran, 2006). In the
case of my own research, the research question did not come from the community

39

involved. Partnerships were, however, sought with communities who found the question
meaningful and important for their community. Furthermore, it is important to be mindful
of the various stakeholders participating in the research process (i.e. researcher and
community members) as participants hold different expertise and knowledge (Minkler,
2005). Challenges can arise when researchers' and community interests in knowledge
production differ; therefore, it is important to maintain open communication throughout
the research process to address these challenges as they may arise. This was not a
challenge in my own work, as I entered the community first and foremost as a learner,
and the participants and community as the experts in this research.
One significant challenge of CPBR is that of' insider-outsider' dynamics,
especially with regards to benefits and rewards. ' Insider-outsider' dynamics are those
between the outside researcher and the partner community (Minkler, 2005). Although an
important aspect ofCBPR is to ensure the community involved is benefited in some way,
the 'outside' researcher usually bas the most to gain from these collaborations taking the
fonn of grants and publications. One challenge of taking on a communi ty-based
participatory approach then, is to address the roles that power and privilege play in the
community-researcher relationship. For university researchers, power and privilege take
the form of expertise in scientific knowledge and ability to access resources, among
others (Wallerstein & Duran, 2006). It was especially important that my own work
addressed the power imbalances present in the community-researcher relationship. Thjs
was done by first and foremost acknowledging such a power imbalance in research exists,
and then challenging the dominance of a 'single scientific discourse' by placing value on
various types of knowledge, through inclusion of methodologies such as CBPR.

40

Although CBPR approaches ostensibly commit the researchers who use them to
inclusive participation by communities, there can be some constraints on community
involvement, such as projects involving marginalized and vulnerable populations. For
example, authors Diaz and Simmons (1999) conducted a Reproductive Health Project in
Brazil and found that despite their efforts to include marginalized and vulnerable women
in the research process, these women were not a position to provide their time and/or
energy towards involvement in the project (Diaz and Simmons, 1999). In other words,
CBPR can be challenging in so far as it demands from peoples' already overcommitted
and often under valued and under-resourced time. It becomes important, then, for
authentic relationships to be built so conversations can be had with community partners
to discuss these kinds of challenges, and strategies for these to be overcome.
Other challenges of community involvement include disagreements between
researcher and community on methods chosen for projects (Minkler, 2005). Often such
disagreements can privilege a researcher, who in relationship with community- even
despite all good intentions - can bold greater access to power, making authentic
partnership or di sagreement difficult. However, through open, respectful communication,
collaborations can foster a space in which both the community and researchers'
knowledge are valued for what they can contribute. This certainly takes work, but the
very concept of CBPR opens up spaces for such contemplation of relationship and
partnership, and a more equitable dialogue between research participant and researcher
may open such spaces. Certainly that is one hope and effort of this research.
Research has shown that community-based participatory research is a positive
tool when addressing health inequities, and especially when working with Indigenous

41

populations (Wallerstein & Duran, 2006; Castleden et al. , 2012; de Leeuw, Greenwood &
Cameron, 2012). Studies with Indigenous peoples have been, and are, rooted in colonial
practices (L.T. Smith, 1999). This must be rectified if persistent health inequalities can
ever authentically be addressed. Research, then, has to change form and intent exactly
because it has been part of the problem of inequality for so long. For example, in the past
(and to some extent into the present day), research around the health of Indigenous
peoples has been misrepresentative, focusing on pathologizing the "Indian" (Kelm, 2005,
see also Willie Ermine, 2007) and results have not reflected Indigenous perspectives or
experiences of health and wellbeing. Furthermore, health research has focused on
pathology and dysfunction rather than recognizing Indigenous perspectives or
experiences and bas thus perpetuated stereotypes of Indigenous peoples (Castleden et al.,
20 12). A community-based participatory research approach seeks to address the colonial
legacy embedded in research practices, through honoring Indigenous knowledge and
research practices, and thus addresses the power imbalances present between researchers
and their subjects (de Leeuw, Greenwood & Cameron, 2012; Ermine, 2007).1t aims for
community ownership and involvement in all stages of the research process, recognizes
Indigenous peoples knowledge and insight, and acknowledges them as partners in the
research process (Cast Ieden et al., 20 12). Therefore, my choice of CBPR as a primary
methodology in this work informed my choice of methods used (i.e. devised theatre),
which opens a space for decolonizing the research process, community involvement, and
ownership.
Indeed, "community-based participatory research has been identified as a research
philosophy and methodology that has the potential to contribute to efforts to decolonize

42

the university researcher-Indigenous community relationship" (Castleden et al., 2012, p.
3). While this may be overly ambitious, and indeed substantive power imbalances seem
to persist despite the best intentions of researchers (de Leeuw, Greenwood & Lindsay,
20 13) community-based participatory approaches lay a philosophical foundation for this
research. ln particular for my research, CBPR further supports my choice of us ing
devised theatre as a method, as devised theatre is a strategy that allows researchers to
enter into a first person narrative on lived experience. This was done through facilitating
a devised theatre workshop where youth participants were the scriptwriters of what was
to be performed. While this research may not have fully adhered to all aspects and
guidelines of a CBPR approach, all efforts within the confines of a Masters degree, were
made to build equitable partnerships between a Northern, rural First Nations community
and the primary researcher. This relational understanding of research, the very heart of
the philosophy of CBPR, is thus arguably the central and guiding force of this project even if some of the stricter mandates of CBPR were adapted to ensure a living and
flexible framework that ultimately allowed the project to be completed in the community.
Furthermore, community approval, participation and ownership was sought in every stage
of the research process, and power imbalances recognized, keeping in line with the
parameters of a CBPR approach. A decolonizing methodology complements a CBPR
approach, further addressing the colonial legacy and power differentials embedded in the
research process, especially when collaborating in research with Indigenous
communities, and is discussed in the next section.

43

3.3 Decolonizing Methodologies
Along with a CBPR approach, a decolonizing methodology offers further
philosophical fou ndation for this research. As previously mentioned, when understanding
Indigenous health, it is imperative to acknowledge how colonjalism has shaped, and
continues to shape, the overall wellbeing of Indigenous communities. Furthermore,
constant reflection throughout the research process on bow the research activities are
perpetuating or dismantling colonial practices is essential. As discussed in Smith's (1999)
important work Decolonizing Methodologies: Research and Indigenous Peoples, Western
research paradigms are viewed as scientific and objective processes; knowledge is "to be
discovered, extracted, appropriated and distributed" (L.T. Smith, 1999, p. 58).
Furthermore, Western culture bas "frequently identified itself as the ethnocentric centre
of legitimate knowledge" (Wilson, 200 1, p. 2 15) and has disregarded Indigenous belief
systems and knowledge. Research 'done on ' Indigenous peoples by colonizers, travellers
and observers has been misrepresentative of Indigenous peoples: it has created stories
that have become accepted as "universal truths, marginalizing the stories of the Other"
(Wilson, 2001, p. 215). Research, then, that seeks to move away from pathologizing
constructions of Indigenous subjects has to carefully account for the long and damaging
history of research itself as a violent and pejorative force in the lives and communities of
Indigenous peoples. Researchers ourselves are implicated in the very positioning and
conceptualizing of Indigenous peoples today - accounting for this, even if we do not
reach absolute answers, is part of the work done by decolonjzing methodologies.
Decolonizing research moves away from Western models/ approaches to research,
by acknowledging, focusing, and emphasizing Indjgenous ways of knowing and being.

44

Indeed, "the development and implementation of Indigenous Methodologies have
become a near necessity for the implementation of research in indigenous communities"
(Evans, Hole, Berg, Hutchinson & Sookraj, 2009, p. 1). Indigenous Methodologies (IM)
encompasses alternative ways of thinking about, and doing research. As noted by Louis
(2006), Indigenous Methodologies are" fluid and dynamic ... [and] emphasize circular
and cyclical perspective .. . [and] aim to ensure that research on Indigenous issues is
accomplished is a more sympathetic, respectful and ethically correct fashion" (Louis,
2007, p. 133). Literature has outlined four principles important to Indigenous research
agendas including: relational accountabi lity; respectful representation; reciprocal
appropriation; and rights and regulation. Relational accountability means approaching
research with an understanding that all parts of the process are related, and ensuring that
the researcher recognizes their responsibility to maintain this holistic view (Louis, 2007).

Respectful (re)presentation involves the researcher being mindful of how they are
representing the research and the people involved in the research; it is about leaving
space for others to collaborate and contribute ideas. As Louis (2007) notes, "It's about
displaying characteristics of humility, generosity, and patience with the process and
accepting decisions of the Indigenous people in regard to the treatment of any knowledge
shared" (p.l 33). The principle reciprocal appropriation requires that there be mutual
benefits to both the Indigenous people and the researcher (Louis, 2007). Finally, rights

and regulation refers to research that is collaborative and determined by Indigenous
practices. This principle protects against the exploitation of Indigenous knowledge, and
allows Indigenous peoples to maintain access to and control over dissemination of
research fmdings (i.e. publications). Given these overarching claims, and because the

45

basis of this research was exploring relationships, it was important to build a relationship
with the community to enter into this partnership in an equitable, authentic and respectfu l
way. By having worked to achieve community support and relationship from the onset of
the project, the research process in this project honors these principles mentioned above.
Furthermore, and in deference to other modes of decolonizing research,
Aboriginal knowledge development that favors narratives of lived experience rather than
'collection of facts or data translated into ' non-personalized' knowledge' (Bartlett et al.,
2007) have been used in all aspects of data collection and analysis. In addition, efforts to
include Aboriginal peoples in all aspects of the research process were made,
acknowledging Aboriginal peoples as the experts in this research. For example, and as
explored in the methods section, this research was heavily reliant upon a community
partner who was very interested in having this research project done in his community.
The community partner was vital in the research process as he helped organize logistics
around the devised theatre workshop, and was the main point of contact throughout the
entire research process. Indeed, the experiences, perspectives, and insights of Indigenous
peoples on research questions and objectives are at the core of the research process and
were part of the driving force when partnering with Indigenous peoples and communities
around research activities, especially for this project. This collaboration was initiated
through pre-established relationships with individuals in the Nass Valley. ln keeping with
a CBPR and decolonjzing approach, the results of this project are acknowledged as the
property of the youth participants and their community, and this work is clearly identified
as Nisga'a First Nation knowledge. Including a decolonizing approach to health research
was especially important because, as Goulet et al. (20 11) note, "the process of

46

decolonization is central in addressing health issues in Indigenous communities" (p. 90).
In this project, a decolonizing approach informed the methods chosen (i.e. devised
theatre), which allowed for conversation of experiences of First Nations youth with their
healthcare providers.
Data gathering methods employed in this project have been chosen with a
decolonizing methodology in mind. As a non-Indigenous researcher I was continuously
reflecting on how colonialism has, and continues to impact research agendas, norms,
values and standards, and thus seeks research methods that challenge 'Western' ways of
doing research. This was put into practice in this research through receiving approval of
the project from the Nisga 'a First Nation, having a community partner to learn from and
work with during the fieldwork process, and results validation from the participants.
Indeed, decolonization " ... is concerned with having a more critical understanding of the
underlying assumptions, motivations and values which inform research practices" (L.T.
Smith, 1999, p. 7). The methods chosen for this project are further described in the
following section.

Part II: Methods
As introduced in the methodologies section, the combination of a social
determinants of health framework, community-based participatory research (CBPR), and
decolonizing methodologies, informed the choice of using devised theatre, a qualitative
method, for this study. When I use the term ' method ' I am talking about the ways in
which knowledge and ideas were gathered. It is important to note that along with devised
theatre, field notes and observations, a community interview, and an open dialogue were
done as complementing tools to collect information. For a list of questions asked during

47

the open dialogue refer to Appendix IV. Furthermore, a snowball sampling technique
was used to recruit participants, which will be discussed later in this section.
Given the imperative of undertaking decolonizing research, which requires
participatory methods, this project used such methods to create a space for youth to tell
their lived experiences about relationships with healthcare providers in their community.
In keeping w ith the goals and efforts of CBPR and decolonizing methodologies, devised
theatre does not favor 'one' single way of producing knowledge (in this case of creating a
play); rather, devised theater as a research method encompasses multiple ways of telling a
story through various modalities, such as movement, sound, and visual technologies
(Perry, 2010). At its core, devised theatre is an active, participatory form of theatre -and
thus a research tool for gathering knowledge and ideas- that emphasizes collaborative
creation and involves "processes of experimentation and sets of creative strategies-rather
than a single methodology" (Govan, Nicholson & Normington, 2007, p. 7). Participants
in this research were "script-makers" in their creation of a drama piece that told the story
of their lived experiences of relationships with healthcare providers. The participants
engaged in a process that brought together their lived experiences, with each story being
important to the creation of the fmal product.
The methods section of this chapter wi ll discuss bow the research was done. First
an overview of devised theatre will be presented, fo llowed by a discussion on the
research steps taken for this project including community relationships and collaboration
building, the devised theatre workshop and open dialogue, and will fini sh with a
discussion on the approval of completed thesis by the community partner, and results
dissemination.

48

3.4 Devised T heatre: A participatory r esearch method and approach
The main data gathering method for this project was devised theatre. Devised
theatre is a genre of theatre that uses performers, participants, and/or artists' real-life
circumstances to build an original non-fictional theatre piece (Oddey, 1994; Govan,
Nicholson & Normington, 2007; Perry, 20 I 0). The "activity of devising" itself can be
described as,

[A] process of making theatre that enables a group of performers to be physically
and practically creative in the sharing and shaping of an original product. .. There
is a freedom of possibilities for all those involved to discover; an emphasis on a
way of working that supports intuition, spontaneity, and an accumulation of ideas.
The process of devising is about the fragmentary experience of understanding
ourselves, our culture, and the world we inhabit. The process reflects a multivision made up of each group member's individual perception of the
world ... Participants make sense of themselves within their own cultural and
social context, investigating, integrating and transforming their personal
experiences (Oddey, 1994, p. 1).

Much like the drive behind Boa!' s ( 1979) Theatre ofthe Oppressed, devised
theatre emerged as a response from those engaging in artistic creations wanting to work
in an "artistically democratic way" (Oddey, 1994, p. 8). Devised theatre gained increased
recognition in the 1970's due to the evolution of socio-political awareness and emphasis
on democracy that emerged in the 1960's; innovations in media technologies; significant
advancement of the fem inist movement; and, most importantly, a response to
conventional art forms, these were all driving forces in the ascendance of the practice
(Perry, 201 0). Unlike traditional literary theatre, which is dominated by "the often
patriarchal, hierarchical relationship of playwright and director," (Oddey, 1994; p. 4)
devised theatre is created and directed by the participants involved, and the process of
play-building is continuously changing and morphing as the devising process unfolds. In

49

this research project, youth participants took on the roles of playwrights and directors,
choosing how best to convey their stories and li ved experiences with healthcare
providers. Indeed, devised theatre challenges the dominant ideology of"one person's text
under another person 's direction" (Oddey, 1994, p. 4). It is precisely the flex ible,
responsive, and inherently anti-colonial nature of devised theatre that made it appealing
as a method to apply within a research project focused on trying to understand powerladen relationships between Aboriginal and non-Aboriginal peoples in the settlerdominated lands of British Columbia.
Over the past sixty years, many devised theatre companies have emerged, and
continue to emerge, gaining a strong presence in theatre industries across the globe
(Perry, 2010). Notable companies include: T he People Show (London, UK, est. 1966),
Theatre de Complicite (London, UK, est. 1983), Sidetrack Theatre (Sydney, Australia,
est. 1979), and Radix (Vancouver, Canada, est. 1988). With this history in mind, it is
interesting to note that very little in the way of devised theatre projects have unfolded in
British Columbia. Theatre projects have been deployed, with success, in at least one
research project similar to this one (see Streigler, 2014) but the application of it within
Nisga' a Territory is, to my knowledge, almost entirely novel.
One significant component of devised theatre is the incorporation of multiple
lived realities and perspectives. Rather than relying solely on the single vision of a
playwright, devised theater privileges multiplicities and complex overlaying of voice
(Perry, 2010). The component of incorporating multiple lived realities and perspectives
was important for this project, as the participants all came from diverse backgrounds,
bringing their own stories and lived experiences. Furthermore, devised theatre was an

50

ideal method to use for this research project as it provides a participatory and inclusive
approach to theatre, and challenges power structures (i.e. playwrights/directors) present
in traditional theatre. Through multiple discussions and theatre-based activities,
participants collaborated with each other to build an original theatre piece, with each
youth's ideas, input and stories being favoured. Devised theatre provided a physical space
and means through which Nisga'a First Nations youth had the psychosocial space to
share narratives about their lived experiences of encounters with healthcare providers.

3.5 Research Steps
This community-based research project unfolded in three stages, all being integral
to the success and completion of this project. The stages of the research project are
summarized in the table below and further explained in this chapter.

Table 1
Research Stages
Stage One
Community Relationships and
Collaboration Building

Prince
George, BC

June-August 2015

Stage Two

Devised Theatre Workshop and
Open Dialogue

New Aiyansh,
BC

September 2015

Stage Three

Approval of final draft of thesis
from WWNI and results sharing

Prince
George/New
Aiyansh, BC

April2016

Stage one: community r elationships and collaboration building.
Respectful, ethical, sympathetic and useful. As discussed in the methodologies
chapter of this thesis, the foundation of this research is anchored in a community-based
participatory approach and decolonizing approach to research. As such, it was important
that the research process included being respectful, ethical, sympathetic and useful (L.T.

51

Smith, 1999). For me, then, it was imperative that the research process be done in a
respectful manner with the community; that it be ethical and receive approval from the
community; that consideration and value be given to all voices involved; and that the
research be useful and something of interest to the community involved. However, to
achieve a research process anchored in CBPR and decolonizing approaches, time is
essential to build relationships and trust with communities. This can become a challenge
when researchers are working with a strict timeline. As a Masters student with limited
resources and a strict timeline, I was unable to build a substantial relationship with the
community before I began my fieldwork. Although this was an initial challenge, the
research process remained respectful to the community, received community approval
and continues to involve the participants and community throughout the duration of the
research.
A critical component of the project was finding interest and receiving approval
from a First Nations community to undertake this research. After my thesis proposal
received approval (on April 30th, 2015) I began making connections with First Nations
communities in Northern BC who might be interested in pursuing this project with me. A
snowball sampling strategy was used (Patton, 1990). A snowball sampling strategy
enables the researcher to identify information rich cases through asking "well-situated
people" (Patton, 1990, p. 176) to refer the researcher to those who could be interested or
key informants for the research study in question.

In May 2015, a contact in the Nass Valley was made through my supervisor's
connection to a graduate student, who herself is from the Nass Valley. This contact
directed me to the Wilp Wilxo'oskwbl Nisga'a Institute (WWNI), the main contact to

52

receive approval for this research. Following the protocols laid out by the Wilp
Wilxo'oskwhl Nisga'a Institute (WWNI), J sent a formal letter and proposal of the
research to the President and CEO of the Wilp Wilxo'oskwhJ Nisga'a Institute in early
May 2015. The proposal was forwarded to the Board of Governors at WWNI for their
review on May 25th, 2015. The Board of Governors is made up of six individuals from
the Nisga'a First Nation. It was important that I submitted a proposal to the board by May
25th, as the board did not meet in tl1e summer months (July and August). A short time
after, I received a letter of conditional approval from the Board of Governors on June
lOth, 2015, two and a half weeks after submitting the proposal. ' Conditional approval '

was based on receiving approval by the Research Ethics Board at UNBC. On July 16th,
2015, I received approval from the UNBC Research Ethics Board for my research project
in the Nass Valley and received subsequent full approval of the project by the WWNI
Board of Governors. 1n line with a decolonizing approach, receiving approval from the
WWNI had to be given before the research process began.
Immediately after receiving approval from the WWNI for the project, I began to
seek collaborations in one of the four Nisga 'a First Nations communities in the Nass
Valley: Gitlaxt'aarniks, Gitwinksihlkw, L~alts ' ap and Gingolx (Nisga 'a Lisims
Government, N.D). Throughout the month of July 2015, I sent e-mails to various people
who work for the Nisga 'a Lisims Government, to make connections with various people
who were able to direct me to community members in the four communities. Initially I
did not receive many responses, but at the end of July 2015, I received an e-mail from an
individual in the Nisga 'a Lisims Government who referred me to PC (name changed for
anonymity purposes), a well connected individual. PC described his role in this research

53

and in the community as: engaging youth and "keep[ing] ... youth active and pretty much
hav[ing] them utilize all the tools that they already have in the rec centre here and just
keep on building on their leadership" (T3, lines 2-4). A research proposal was sent to PC
by e-mai l, who immediately responded with his support for this project to be held in his
community. PC was the main point of contact during the fieldwork portion of the
research, and was essential in helping organize the weeklong drama workshop. In August
2015, contact was maintained with PC by e-mail to discuss the logistics of the workshop,
and to decide upon a date to hold the workshop. Keeping in line with CBPR and
decolonizing approaches, PC was asked to choose a date that best worked for his
community to hold the workshop. This was a challenge, as the workshop was initially
scheduled for the last week of August 2015, but bad to change to the third week in
September 2015 due to unavailability of many youth during the month of August. This
was a pivotal moment for me as I realized the incredible flexibi lity needed for
community-based research. It is to be the community driving the project.
As a principle community partner, PC led the way in organizing a space to hold
the workshop and ensuring a catered dinner was provided for participants. Food was
considered an important part of this youth-based project. In planning the workshop, I
wanted to provide a meal to participants. This was primarily due to the workshop
extending over dinnertime, but also to have time to socialize with participants, and get to
know them personally. In conversations over dinnertime, I learned that participants, both
women, considered the workshop a chance to have "me time", and to chat with other
adults about issues important to them in their community.

54

PC also organized my accommodation. Most importantly, PC helped recruit youth
from the community to partake in the weeklong drama workshop. PC delivered posters I
made, and, included the workshop in their calendar of events at the Rec Centre. It is
important to note that PC 'paved the way' for this research to be done in the community
ofGitlaxt'aamiks. He organized the logistics ofthe workshop, and informed community
members of this project. Without the constant support of PC, I would have entered the
community a complete stranger, without the ability to do such a project. Through
building a purposeful and meaningful relationship with a community member, this
research came alive.
As mentioned in the methodologies chapter, CPBR generally works around a
research question that comes from the community. Although the community of New
Aiyansh did not create the research question for this project, the topic was of interest to
PC and youth participants. The research was reflective of issues and concerns in the
community. For example, at the end of the weeklong drama workshop I interviewed PC
to ask questions related to the workshop. One of the central questions PC wanted to see
answered, or wanted the research to address, was ability for information from the
workshop to be used in his community. PC noted, "I kinda hope [the information from
the workshop] can tum [the healthcare services] around, and somewhat help because you
[can] only write so many letters to do so many things right?" (T3, lines 53-54). Indeed,
while not following any ridged or prescriptive template for CBPR, this project followed
what might be understood as the 'spirit of CBPR' - namely that the research, in line with
decolonizing methodologies, is supported by community partners, that it is committed to

55

utility, and that it is ultimately endorsed as being relevant. To this end, the research,
along with an "easy to read" version, will be returned to the Nisga 'a Nation.

Stage two: devised theatre workshop and open dialogue.
Drama workshop and discussions. The principal fieldwork for this project was carried
out over four days (September 14'b -171h, 20 15) and involved a 4-day devised theatre
workshop, with an open dialogue at the end of the fourth day. The drama workshop
initially involved three female participants (which later became only two participants)
between the ages of 19 and 25, took place in September 2015, and was organized over the
course of four days for 4-5 hours each day. Using tecbillques, such as Image Theatre
from Boat's ( 1979) Theatre of the Oppressed, discussions were bad about issues and
experiences that Nisga 'a First Nations youth face when interacting with healthcare
professionals and services. Methods anchored in Image Theater encouraged participants
to, using nonverbal communication, "sculpt" each other into physical images (for
examples see Figure 3, 4, and, 5, on p. 69-70). The basis oflmage Theatre is to explore
issues of oppression by creating concrete or abstract "images" to depict a thought,
feeling, issue, or moment. Participants are asked to reshape the image to show different
perspectives. For this research, activities such as Image Theatre provided a nonthreatening context to speak about lived experiences in a deep cultural context. A
decolonizing methodology demands the incorporation of more Indigenous ways of doing
research. The drama workshop provided a research strategy more resonant with
Indigenous ways of doing research, and as explored further on, this resonated with
community.

56

Each day of the workshop focused on a different question about health and
experiences of relationships with healthcare providers. Activ ities, games and discussions
also focused around the specific questions (See Table 2).
Table 2

Research Questions Explored during Drama Workshop
Day
Question Explored
Day I

How do First Nations youth understand ·health.?

Day 2

What are youth perceptions of and lived experi ences with their healthcare
providers?

Day 3

What do Nisga ·a First Nations youth want to say to those who provide health
services?

Day 4

Devise strategies with Nisga·a First Nations youth for the healthcare system and
providers that are consistent with youth· s perspectives and needs around health

Theatre activities and games were taken from: The Health Arts Research Centre Art
Worksheets (see Figure I) (Ward & de Leeuw. 20 15): Games for Actors and Non-Actors
(Boal, 1992); Improvisation for the Theatre, 3rd Ed (Spolin, 1999); and. Theatre Games
for Young Performers. Improvisations and Exercises for Developing Acting kills
(Novelly, 1993).
Posed Theatre

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Figure 1. Screenshot of HARC art worksheets.

57

Specifically, activities took the form of various theatre games and di scussions,
involving all participants, with each game/discussion ranging from 10-30 minutes with
two short breaks and one long break for dinner. It is important to note that for the first
two days of the workshop there were three female participants, however on the third and
fourth day one of the participants did not return. The original schedule and outline of
activities for the drama workshop changed due to participant interest and com fort in
doing theatre activities. This too, arguably, is part of the spirit of decolonizing CBPR that the very nature of the ' data gathering' is fluid and responsive, not dictatorial or
driven from an omniscient power-centered researcher. For example, after the fu st day, I
asked for feedback from participants with regards to what they wanted to get out of the
theatre workshop. One participant (who was present during the entire duration oftbe
workshop) was not comfortable participating in all the activities and, as such, activities
were modified/chosen based on the comfort levels of the participants. Indeed, researchers
" ... dedicated to facilitating a process that is representative of all participants will accept
that the research ... might completely change" (MacDonald, Ford, Willox, Mitchell,
Productions, & Storytelling, 2015, p. 490). Building from discussions and theatre
activities, a short scene was created to represent the lived experiences ofNisga'a youth,
through 3 frozen tableaus. A tableau is a frozen image depicting a scene. An in-depth
description of the creation of the short scene and tableaus is discussed in the section that
follows.

Field notes and observations. Field notes and observations were documented in a journal
throughout the week long workshop. On the first day of the workshop, participants did not
sign the consent form and noted they did not want to be voice recorded . This was due to

58

miscommunication on what the recordings were to be used for. On the first day of the
workshop, two of the three participants had concerns that voice-recordings would be
shared with people other than myself. At first, I did not fu lly understand this concern, as I
thought I had made it clear to participants that voice-recordings were for my own
personal use. On the third day of the workshop only two of the three female participants
returned to partake in the workshop. I clearly articulated to both participants that voicerecordings would not be heard by anyone other than myself. After clarifying this on the
third day, both participants agreed to be recorded. As such, the first and second day did
not have any audio recordings of the discussions and instead I relied on written field
notes, reflections and observations of discussions that took place over those two days.
Day one. The workshop began on Monday, September 14th, 2015 at the Recreation

Centre in New Aiyansh. PC contacted five youth who he encouraged to participate in the
workshop. Ofthe five expected to come, only three attended, all young women. It is
important to note that the young women are all mothers, and each day of the drama
workshop, participants brought their children, who played at the Rec Centre while their
mothers partook in the drama workshop, with some children occasionally joining their
mothers in the workshop. The workshop, which was held in the youth room at the Rec
Centre, was scheduled to start at 15:00. PC remained present throughout the four days of
the workshop, as he was running other youth programs at the Rec Centre during the same
time as the workshop. As participants trickled in, they were given information and
consent forms. They read over their forms quietly. 1 moved around the room to ask
participants if they had any questions or concerns about the consent fom1s, but no big
concerns were voiced. Only one participant fully signed the consent fonn, as the other

59

participants did not want to sign consent for being recorded. This, as mentioned above,
was a miscommunication as the participants thought the voice-recordings of the
discussions were going to be shown to others outside the workshop. Once this was
clarified (on the third day) participants consented to have discussions audio recorded and
the final scene video-recorded. After participants were given consent forms, Gary Davis
Sr., an Elder and priest in the community, opened the drama workshop with a prayer.
The purpose of the first day of the workshop was to ask youth how they understand
'health.' Each day of the workshop started with a 'check-in': two words that described
how youth were feeling that day. Participants enjoyed this exercise as it helped to break
the ice and open up a space of dialogue. The check-in was followed by physical
stretching and vocal warm up. Vocal exercises were taken from Novelly's ( 1993) Theatre

Games for Young Peiformers, Improvisations and Exercises for Developing Acting Skills.
The vocal exercises included participants ' working on breathing techniques, breathing in
slowly, and out slowly. Participants were asked to breathe in counting from one to ten,
with their voice starting off quiet, and getting louder as they reached ten. Participants
were then asked to count in different voices. For example, participants were asked to
count in a happy, sad, and angry voice. After the vocal warm up, I could feel tension and
nervousness from the participants.

The participants are very timid/shy about participating- except for
one ofthem. Atfirst !felt hopeless- how was I going to engage
them? They were saying, "oh theatre isn 't what! was expecting... "
But they all ended up staying and after introducing eve1ything and
doing the check-in they got a lillie more comfortable with the
activities (Field Notes I , lines 1-6).

60

In the next theatre activity, participants walked around the room and I would give them a
scenario, which they had to 'act.' For example, I would say, "walk like you are in a
muddy swamp." The participants' movements began to slow down and they physically
acted out the movements they imagined that 'walking in a muddy swamp' would be like.
After the wam1-up and theatre games, a break for dinner was scheduled. Each day a
meal was brought to the Recreation Centre for participants, as the workshop was held
during dinnertime. During dinner the three women and myself had conversation, and I
asked them questions to get to know them. After the dinner break, participants were
introduced to devised theatre exercises, such as 'Posed Theatre.' Participants were asked
to come up with three random poses - one high up (i.e. stand ing), one medium (i.e.
bending over), and one low down (i.e. close to the ground). Each pose was done in a
different part of the room and participants were asked to find a way to move between the
three poses they came up with. Posed Theatre was used to help youth "move away from
simply moving and to think about creating strong visual images through physical theatre"
(Ward & de Leeuw, 2015, Posed Theatre Worksheet). Participants were asked to create
images that represented 'health.' After the Posed Theatre exercise, a discussion was
facilitated on how youth understand health- or more simply put, youth were asked "What
is important for you to be healthy?" and "What comes to your mind when you think
about the word 'health '?" A game was facilitated to help encourage discussion, in which
participants got in a circle and took turns finishing the sentence: "In my backpack of
health is

."After this activity, participants were given sticky notes and asked

to write down things that make them 'healthy.' These sticky notes were then stuck to a

61

bristol board to show a 'collage' of their ideas (See Figure I). PC participated in tnis
discussion. as he had come by the room to see how we were all doing.

Figure 2. What makes me healthy? Photo by author.
After the final activity. the session concluded with a ·check-out.· Much like the
·check-in· participants had the opportunity to express how they were feeling after the
workshop and provide feedback. concerns and ask any questions. I asked pa11icipants
what they wanted to see happen in the drama workshop. and reminded them that this
workshop was "theirs." I wanted to open a space for them to be able to provide me with
feedback so that I could tailor the workshop to their interests. and expectations. The
session concluded early at 7:30pm. At the end of each day I met with PC to ·debrief" how
the workshop sessions went. Due to the low number ofyouth that participated on the first
day. I asked PC to let others in ills community, old and young, know that the workshop
was opened up to whoever was interested in hopes that more people would come the next
day. PC assured me he would let the community know the workshop was opened up to
anyone. however, it ended up being too late of notice for other community members to
participate.

62

Day two. The purpose of the second day was to facilitate activities and discussions

around youth's perceptions of and lived experiences with their health care providers. The
same three women participated in the second day. This indicated to me that there was
some interest in and acceptance of the research work. I arrived at the Rec Centre at
3:00pm to meet with PC who opened the youth room for me to set up. The second day,
which began at 3:30pm, consisted of the same format as the frrst day: two word check-in,
physical and vocal warm-up and theatre games from Boa I 's (1992) Games for Actors and

Non-Actors, followed by a break for dinner. The vocal warm up was the same format as
the first day. The theatre games from Boal's (1992) Games for Actors and Non-Actors
included:

•

"Tell your own story": one participant is asked to recount an experience, and the
other participants then illustrate that story with their bodies. The storyteller is not
allowed to intervene or make corrections during the illustration given by the other
participants. At the end of the activity, participants discuss differences.

• "The plain mirror" : participants get into pairs, and face each other. One
participant is the 'subject' and the other is the ' image.' The subject begins to
move, and the 'image' must copy what the 'subject' is doing. The purpose of this
activity is not for the 'subject' to move fast and make sharp movements, but
rather for the 'subject' and 'image' to become synchronistic in their movements,
so that someone on the outside would not know who is leading the movements.
After dinner, an 'Image Theatre' (Ward & de Lceuw, 2015) exercise was
organized. Image Theatre exercises encourage participants to use their bodies and body
positions to "express their feelings, share ideas or suggest solutions through movement

63

and interaction with other participants" (Ward & de Leeuw, 20 15, Image Theatre
Worksheet). Participants were given a physical space (that in turn, opened up a
psychosocial space) to share their stories of lived experiences with healthcare providers
through the use oflmagc Theatre. This activity begins with two participants paired up
and the third participant as a 'spectator.' The pair starts by shaking hands and freezing in
that position. The 'spectator' is asked to describe what they see in the image of the two
participants shaking hands. One of the participants leaves the frozen image, and the
spectator comes in to complete the image, making a different 'story.'
Participants voiced that they were hesitant and unsure how to act out their
experiences using their bodies. This hesitancy could be explained by having a new person
(i.e. the researcher) present, and without a lot of time to get to know one another. This
was expected, as theatre often asks people to be vulnerable and can be uncomfortable in
the presence of strangers. Therefore, it was important to ' break the ice' and begin the
process with a discussion, and verbal participation, before asking for physical
participation. This gave participants a chance to get to know me, and for the participants
to put more thought into the physical movements they would create. This led to a
discussion with participants about what kinds of experiences they have bad with
healthcarc providers and systems in their community and elsewhere.

The women are a little unsure about how to use their bodies to 'tell a story'
so I suggested having a discussion instead. The themes that came up today
about experiences with healthcare providers were positive and negative.
They talked about this one nurse who is back in the community and they
really like her. She is approachable and listens to their concerns and they
trust her. This was a positive experience that they talked about. When I put
the board up that said relationships with healthcare providers, one
participant commented, "that board will fill up" (Field Notes 2, lines 9-14).

64

Given that participants enjoyed the activity on the first day of using sticky notes
to express their thoughts, a bristol board was put up and named "Experiences with
Healthcare Providers.'' Participants, again, used sticky notes to write words that described
their experiences. both positive and negative (See Figure 3). One participant commented,
'·that board will fill up!·· (FN 2. line 12-13). This was in reference to the fact that
participants were excited to contribute their stories and thoughts to a shared space, and
further emphasized, for myself. the importance of discussion around participants·
experiences. prior to asking for physical expression. This was a pivotal moment. in which
the participants took ownership and control over the process, by redirecting the way the
drama workshop unfolded. This reminded me of the need for flexibility. and continual
awareness of the principles ofCBPR.

Expe,ner1c e "''tn
HtnHhccare PrtW14~rs
...

Figure 3. Experiences with healthcare providers. Photo by author.

The second day concluded at 7:30pm after the 'check-out" activity, in which participants
expressed feeling good about being able to talk about their ex periences with others. and
excitement for the next day. I spoke with PC briefly to let him know how the second day
went. and went home to prepare for the third day.

65

Today went well. I had the same 3 participants- all female, all mothers. Today
we started with some fun activities and did a lot about storytelling. We had a
discussion again about experiences with healthcare providers and I tried to
see if the women were open to creating images to represent their experiences.
They are still a little timid and shy to. Two of the women still haven't signed
the consent fonn because they aren't sure they want to be filmed or recorded. I
tried to explain to them that even if they signed the consent form they could
still back out at any time (Field Notes 2, lines 1-8).

Day three. The purpose of the third day of the workshop was to ask participants
"What they want to say to those who provide health services?" On the third day, only two
women attended, as one was unavailable due to prior commitments. Therefore, the
workshop on the third day was shorter than the other days. The workshop started at
3:30pm and began with a check-in, physical and vocal warm-up (similar to that of the
first and second day), followed by theatre activities focusing on storytelling (Ward & de
Lceuw, 2015).

Although the discussions and activities have been going really well, I am still
caught up in the fact that I only have 3 participants. I wish I would ofgotten
more. After being in the community for 2 days I feel a lillie more comfortable. I
really enjoy going into the workshop and meeting with the women and talking
about their experiences and doing theatre activities with them. They are all so
interesting and bright and just really amazing women. I don't know how to
describe this feeling but I like hanging out with them and being in the
community. I feel honored that they are opening up to me and telling me about
their experiences (Field Notes 3, lines 27-34).

The first activity was a one-word story. The participants and myself sat in a circle,
and decided on a topic for the story. Each of us contributed one word at a time, to create a
story about hcalthcare experiences with healthcare providers. The next activity involved
'contentless dialogue' (Novelly, 1993). This activity included a 'bare' script, giving no

66

clues of what the dialogue was about. Both participants were given a script with 'bare'
dialogue. The participants took turns speaking thei r lines, and were asked to speak the
lines without any emotion. This exercise was repeated with participants adding 'colour'
to their dialogue. For example, I asked the women to say their lines in a 'cold,' 'relaxed,'
and 'crunchy' way. These exercises helped engage participants in techniques useful to
build their fi nal scene.
After finishing these theatre activities, participants took a break for dinner. During
dinner, some young kids playing at the Rec Centre joined the participants and myself. It
was nice to get to know other youth in the community, and share a meal with others, as
there was always an abundance of food left over. After dinner, youth wanted to continue
discussions around their experiences with healthcare providers. I asked the women if it
was alright if I recorded their discussion, and explained it would be for my own use, so
that I could remember what was said in the discussion. The women consented to be voice
recorded.

1 went over the consent form and told the participants that the recordings are
just for me to remember what they said. The participants have now agreed to
be voice recorded and do an 'open-dialogue' because that is a lillie bit less
intimidating/or them than a one-on-one interview. They were joking around
about how doing an interview is a little intimidating because you are in the
spotlight and ifyou say something you can't go back and 'erase' it (Field
Notes 3, lines 34-38).

By the third day, participants were more open and comfortable discussing their
experiences. Youth spoke about negative and positive experiences, as well as what they
believe to be an 'ideal' relationship with healthcarc providers. Participants were asked to
come up with words that described experiences they were discussing, as these words

67

would be used the fo ll owing day in the final scene created by participants. At the end of
the day, the women shared why they had decided to participate in the workshop. Some of
their responses were because they wanted to try something new and were interested in the
combination of health and drama. The third day finished with a check-out activity at
7:00pm.
Day four. The final day began at 3:30pm and finished at 8:00pm. Only two

participants attended, as the third participant who missed the previous day did not return.
The final day consisted of: 1) wrapping up the drama workshop with the creation of a
short scene expressing lived experiences of participants and, 2) facilitating an open
dialogue to ask participants about the scene created, their experience participating in the
drama workshop and di scuss youth-devised strategies for the healthcare system and
providers in the youths' community that are consistent with participants perspectives and
needs around health. On the fourth day, the women expressed their sadness that the
workshop was coming to a close, and bow they really enjoyed participating in something
meaningful to them. I too felt sad that the workshop was coming to a close, as by the end
of the week, I felt as though the women continued to open up to me, and were
comfortable telling me their stories. The final day was exciting, as it included the women
creating a physical scene to convey their lived experiences, which had been discussed
throughout the week.
(1) Crealion ofshort scene. The aim of the drama workshop was for participants

to work towards creating a scene depicting relationships of experiences with their
healthcare providers. Participants were encouraged to utilize tools and techniques of
devised theatre (i.e. image theater/posed theatre) that were discussed and practiced

68

throughout the week. There were no expectations or limits of what had to be included in
this scene, or bow long it had to be. The participants, as 'directors' and 'scriptwriters'
decided bow they were going to present their lived experiences. On the final day of the
workshop, participants decided the best way to portray their experiences was through
choosing words that represent their relationships and experiences, and acting these out in
tableaus, which are frozen pictures. The youth sat together and discussed amongst
themselves which words they wanted to use. The final scene is described below:
The scene was broken into three " tableaus" (i.e. a frozen image) moving from one
to the next. The scene began with the first tableau depicting a negative experience
represented by the words 'disconnected' and 'unapproachable.' This tableau was done on
the ground. In silence, two female participants sat on the floor across from each other,
one participant curled in the fetal position and the other kneeling over that participant,
with a pen and paper in band. The participant curled in the fetal position was representing
a ' patient' and the participant kneeling was representing a 'doctor' (see Figure 4). The
youth froze in this position for 10 seconds. The participants then slowly, and silently,
moved into the second tableau (see Figure 5). It is important to note that photos are
included to show a visual representation ofthe participants ' 'tableaus', however for
respect of privacy and anonymity, the participants' faces have been blurred out.

69

Figure -1.

creenshot of first frozen tableau representing 'disconnect.'

During the second tableau. participants moved up, off the floor. into a standing
position. The parti cipants stood with their feet wide apart and their arms out beside them,
as if they were trying to get their balance. This tableau illustrated moving from a negative
experience to a neutral. more positive experience. and represented the words 'control'
and 'stabili ty.' Again, the participant who had been in the fetal position represented the
·patient' and the participant who had been kneeling represented the 'doctor.' The
participants froze in this tableau for another l 0 seconds. and slowly and silently moved
into the third and final tableau (see Figure 6).

70

Figure 5. Screenshot of second frozen tableau representing 'control. '

The final tableau depicted both youth standing up taiL reaching up and touching
each other's hands. Thi s tableau symbolized positive experiences, representing the words
·empowerment· and ·connection.· Participants explained this frozen image as the doctor
and patient making a connection. and finally touching base. Participants stood frozen in
thi s tableau for 10 seconds. and completed the devised short scene representing
participants' lived experiences of relationships with healthcare providers (see Figure 6).

71

Fig ure 6. Screenshot of final frozen tabl eau representing 'em powerm ent.·

The workshop had the option to finish with a live performance of the short scene
created, inviting community members and healthcare service providers to attend.
However. youth participants did not feel comfortable presenting their short scene. and
alternatively. the final dramatic creation was video-recorded.
(2) Open dialogue. An open dialogue concluded the weeklong workshop. Initially, in-

depth interviews were organized to conclude the workshop. but participants voiced
concerns of doing one-on-one interviews and were not comfortable with doing that kind

72

interview. Parti cipants explained that they were not comfortable speaking one on one, as
they felt this placed a great amount of pressure on them to answer the interview
questions. As part of a decolonizing methodology, it was my role to shift the direction of
the research based on the feedback I received from participants around doing a one-onone interview. This too, is part of the spirit of decolonizing CBPR - to allow for
flexibility in the research process and for participants to take ownership and a leading
role in how the research unfolds.
An open dialogue 'interview' was suggested as an alternative, which the participants

approved of due to the "group" nature. The open dialogue consisted of 9 open-ended
questions grouped into two sections: l) scene creation and, 2) participation in theatre
workshop. The questions were used to guide the discussion giving the open dialogue
facilitator "the flexibility to keep the [open dialogue] conversational, to go off-script, and
to choose questions in the order best suited to the direction of the conversation"
(MacDonald et al. , 2015, p. 490). Examples ofthe questions asked included: "Tell me
about the scenes you made. What was it about?" "Do you think the scenes accurately
portrayed experiences you have had with physicians/healthcare services in your
community?" "What is the main message you wanted the scenes to convey? What is the
main message you think the scenes actually conveyed?" and, "Would you use theatre to
share your experiences and ideas again if you had never participated in this process?" As
mentioned earlier, both women spoke of their participation in the workshop as having
"me time". This was brought up again in the open dialogue. When I asked the women
about their feelings towards being involved in the drama workshop, one participant noted,
[Participating in the workshop] fe lt good to get out and be around more adults and
just. .. have 'adult' time and ' me' time ... cause I tend to not have any 'me' time, I

73

always put everybody ahead of myself and there's maybe like that one rare moment
where I get 5 minutes of quiet (FG, lines 260-261, 263-264).
This fee ling was echoed by another participant who said "I fe lt like I got to be silly and it
didn 't feel like work at all and it just felt like you know games, but it was leading up to
something" (FG, lines 269-271 ). This feedback speaks to the strengths of using arts-based
methods in research with young, Indigenous women, and will be discussed furth er in
Chapter 6 (Recommendations for Future Research).
Although the findings will be discussed in much greater detail in the next chapter, it is
important to note that two participants conversed in the open dialogue, with both
participants voicing positive and negative experiences of relationships with their
healthcare providers. This is inductive of the importance of offering flexibl e kinds of data
gathering approaches, as some may not be conducive to participants, as was the
experience in the data gathering process of my research.

I'm really sad the workshop is over. I had such a wonderful time getting to know
the women and spending time in New Aiyansh. Although I only spent 4 days with
the women, I feel/ike I've known them for a while, and really enjoyed chatting
with them. They have such amazing stories, and I feel so honored to have heard
them, and learned from all of them. (Field Notes 4, lines 1-5).

Stage three: approval of final draft of thesis from WWNI and results sharing.
The third and fina l stage of the research included ' member checking' with
participants to ensure the results were accurately representing their stories; seeking
approval from the WWNI of the final draft of the thesis and; results sharing with the
community of New Aiyansh and the WWNI board of directors. Member checking is "a
quality control process by which a researcher seeks to improve the accuracy, credibility
and validity of what has been recorded during a research interview" (Harper & Cole,

74

2012, p. 5 10). In CBPR, member checking is an important part of the research process as
the fmdings of the research are shared with participants to ensure that what is written in
the results reflects the views, feelings, and experiences of the participants. In February
2016, both participants were contacted via e-mail to ask if they could verify that the
fmdings reflected their experiences. Neither of the participants responded to the e-mail ,
however, continuous efforts remain to contact them for results verification. In April 2016
a final draft of this thesis [was] sent to the WWNI Board of Directors for their review and
approval. After the completion of my thesis defense, a formal presentation on this
research wi ll be made to the WWNI Board and the community of New Aiyansh. It is
important to note that this process will continue to be an ongoing " living" process
wherein I will maintain contact with the community.

3.6 Data Analysis
Narrative analysis was used to interpret data and identify themes (Reissman,
2008). Narrative analysis focuses on stories told by individuals, groups, societies or
cultures in order to understand lived experience, and to "follow participants down their
trail" (Reissman, 2008, p. 24). Narrative analysis was chosen as the primary analyzing
technique due to its focus on preserving each individual's 'story ' or 'account' to maintain
integrity of stories (Shutt, 2011 ). According to Reissman (2008), narrative analysis does
not contain any specific procedures or guidelines to carry out analysis, compared to many
other form s of qualitative analysis. There are four analytic approaches of narrative
analysis including: thematic analysis, structural analysis, dialogic/performance analysis,
and visual analysis (Reissman, 2008). For the purposes of this research, a thematic
analysis was used to categorize stories/experiences of First Nations youth, into themes.

75

Thematic analysis is used in qualitative research to identify themes or patterns in data
(Joffe and Yardley, 2004). Themes can be directly observable through repetitive mention
of specific phrases or words, or can be implied indirectly through discussions and
discourse (Joffe and Yardley, 2004). Thematic analysis allows the data to 'speak for
itself because direct quotations are used in the fmdings. Due to the decolonizing nature
of this research, I wanted to use a data analysis technique that would not alter what was
said in the transcriptions, and thematic analysis enabled me to keep as much raw data as
possible. Furthermore, the work was represented visually, through screenshots from the
video recording of participants' final 'scene.'
To start analyzing data, transcripts from discussions, the open dialogue and
personal field notes were read and re-read, making note of similar themes between stories
and quotes. Codes were developed to group common quotes, words, ideas and stories into
categories. In addition, concept maps were created to further compare relationships and
overlap between themes. Stories and quotes were further condensed and grouped, until
four key themes emerged representing negative and positive experiences of stories First
Nations youth told during the drama workshop.
Conclusion
In total, three data sets were collected. These included 1) transcripts from group
discussions during the weeklong devised theatre workshop and visual recordings (i.e.
photos), 2) transcripts from an open dialogue post-workshop, and, 3) personal field notes
and observations. Furthermore, visual data (i.e. photos) were included in the
representation of data. Drawing and analyzing in an in-depth fashion, the next chapter
wi ll discuss the findings of this research project. Specifically, I will "make sense" ofthe

76

various data collected and then "put to use" these results with reference both to answering
my research questions and gesturing toward where such work might go in the future.

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CHAPTER 4: FINDINGS
Upon analyzing and reflecting on multiple data sources, including transcripts
from group discussions during a week long devised theatre workshop, transcripts from an
open dialogue post-workshop. and personal field notes and observations, four key themes
emerged that exempli fy First Nations youths' experiences of re lationships with heaJthcare
providers in a Northern British Columbia N isga·a First Nations community . The
following themes will be presented in a fashion linear to the way they evolved in the
dramatic scene (i.e. negative experiences to positive experiences). It is important to note
that participants' stories shared below are based on li ved experiences. indi vidually and
with one's family, and may not represent all Nisga'a youths' experiences of relationships
with their healthcare providers.

Figure 7. Words taken from transcript representing youths' experiences.

4.1 Disconn ect
A feeling of disconnect between participants and their healthcare providers was
one theme repeatedly emphasized within multiple data sources. most notably from
discussions during the weeklong drama workshop, the final scene created, and open
dialogue discussion. When describing negative encounters within the healthcare system,

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participants used words and shared experiences that described healthcare professionals as
unapproachable and distant. For example, in explaining an experience, one participant
said, "[The healthcare providers] just seem very disconnected." (T2, line 24). Participants
used powerful metaphors to describe their feel ings of disconnection from their hea lthcare
practitioner. As one participant put it,
I don't want them to have a personal relationship with me, and like invite me over
to dinner, but they don't have to be so disconnected to where you know, there
may as well be a big glass pane between us. (T2, lines 18-21)

This idea of a glass pane separating a patient from a doctor points to the feeling that
despite being able to see one another, there remains a barrier to any physical touch or
interaction.
Experiences in which participants felt inferior to their physician were identified as
the root cause behind feelings of disconnect. As one youth noted," ... that's why we
switched from her [to another doctor] ... cause she was so ignorant and nose in the air all
the time" (T2, lines I 0-11 ). In this sense, participants are describing themselves feeling
positioned as 'not as good as' or 'lower than' in the sense of status. While perspectives
about "status" were identified as the place from which disconnect stems,
miscommunication was noted as that to which disconnect leads. The comments from
participants could allude to their position as a minority (Aboriginal, women, youth),
thereby positioning them behind a glass wall, leading to miscommunication. This arose in
further discussion, where participants noted bow disconnect can be cause for lack of
mutual understanding and not being heard by bealtbcare providers, with one participant
noting, "[Miscommunication is] what really bothers me." (T2, line 22). The idea of a
'glass pane' described by participants also speaks to miscommunication. When there is a

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glass wall separating you from someone, you see them, but you do not hear them. This
was representative of how participants explained mi scommunication: healthcare
providers "saw" them, but there is no opportunity to be beard. This sentiment was
exemplified by a participant who explained how miscommunication included not being
heard by her healthcare provider, stating she wants a healthcare provider who "listens
genuinely to actually hear, not reply ... cause that's what most people do, is just listen to
reply" (T2, line 119, 121). The act of "genuine listening" does not require response, but
requires acknowledgement that the speaker bas been beard and understood. This may
prove difficult for a healthcare provider who is accustomed to providing solutions and
advice as their immediate response to patients.
The theme of disconnect was clearly portrayed in the final frozen tableau thematic
scene of experiences designed and delivered by participants in the drama enactment. The
scene began with participants sitting down side by side. One participant took the role of
the doctor and the other acting as the patient. The two participants then moved into a
frozen ' tableau ' (i.e. freeze frame of the scene in which both participants ' freeze' in a
position) (See Figure 3), illustrating the doctor looking at the patient with annoyance and
the patient curled up in a ball beside the doctor. The actors used the word disconnected to
describe this tableau repeating the idea of a 'glass wall' separating the patient and
physician, and went on to describe the image of the patient as helpless or belittled. The
participant who played the patient role noted "the specific action I was taking at the
beginning [was being] belittled because I just felt like I was in a small little ball where I
felt helpless and when you feel helpless you want to return to the fetal position where you
feel safe" (FG, lines 59-62). Participants conceptualized the doctor's look of annoyance

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and body language as the reaction to feeling the burden of having to deal with "just
another problem." As the participant playing the doctor put it, "I was in no way
approaching [the patient) to help, I was just sitting there" (FG, line 63). The participant
voiced embodying a physician view of thinking," 'Can [this patient) solve her own
problem?' " (FG, line 66) or " ' Can [the patient] just tell me what medicine [they] want
me to prescribe [them] and be done?'" (FG, line 67). Furthermore, participants described
the doctor's body language presented in the tableau as indicative of wanting the day to
end. During the process of making the tableau, participants also mentioned how the ftrst
tableau represented the "reality of [healthcare services in their community]" (FG, line 22)
and one youth mentioned, " ... in a way it kinda does symbolize our healthcare here .. .it
seems like you get that attitude where they don 't really wanna give you their service"
(FG, lines 193-195).
The theme of disconnect not only captures feelings of being 'separated' from
one 's physician, but also feelings that physicians do not understand, value, or practice
healthcare with a holistic perspective. Instead, participants depicted physicians dealing
with patient 'problems' and health concerns by prescribing medication rather than
showing interest in talking to or authentically understanding participants ' health
concerns. In this context, a patient may feel positioned as a ' thing' to be dealt with
through quick fixes. Such feelings or experiences may then translate into disconnect
between health concerns and health care received, as well as disconnect between patient
and physician perspectives of health. Furthermore, there was direct reference to feeling
inadequately serviced specifically because ofliving in a small, isolated First Nations

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community, with participants noting, " ... in a way it kinda does symbolize our healthcare
here" (FG, line 193).
4.2 When the body speaks - receiving incomplete care
The theme of incompleteness came up throughout discussions, during the open
dialogue and in personal field notes and observations. This theme connects with
experiences ofbeing left with unanswered questions to healthcare providers or with
unsatisfying responses, and thus feelings of incomplete service that lead to patients
seeking health services outside their community. Participants felt bealthcare providers
should ask if the infom1ation or answer was helpful, and, if not, direct the patient to other
healthcare providers who may be better suited to answer the questions. As one participant
commented, "I don' t want [doctors] to feel that I don 't trust their opinion but. .. when
you' re left with more questions, [doctors] should ask you ... ' Was any of this
helpful? ... Are you kindajust feeling like where you [were] at, [at] the beginning ofthe
appointment?'" (FG, 155, 129-130, 135- 136). Participants explained bow they would
like their doctors to respond in situations where they are unable to answer questions,
noting that they would like doctors to say," ... there are people who can better answer
your questions, cause I know you have very specific questions. Would you like me to
refer you to someone you feel could help you further?" (FG, lines 155-157, 139).
Participants also mentioned experiences in which their physician 's body language
made them feel that as patients they were "dragging out the appointment" (FG, lines150151) and there was not a space opened to ask questions. As one participant put it, " .. .if
[the doctor] stare[s] hard enough then [the patient will] just leave." (FG, lines 142-143).
In these types of situations, participants said they felt like "a burden rather than a patient"

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(FG, line 153). This was fully exemplified in a statement made by one participant when
she said,
I always say no when they say ' Do you have any questions?' ... and then I just
leave ... and then [my family is] like, 'Oh, why didn 't you say that? ' when I get
home and vent about it ... and I'm like, 'Cause it just seems like I was draggin out
the appointment.' (FG, lines 146-147, 149-151).

Participants also reported having to seek out health services available in Terrace,
BC, an hour outside of their community, when they felt that their questions and concerns
were not taken seriously by their local healthcare practitioner. One participant
commented,
Most times I 'm left just racing to [Terrace] ... and then the doctor there will be
like, 'Oh I'm so sorry, you shoulda came sooner, coulda been preventable ... you
or your child wouldn' t of gotten this worse or this bad, it was preventable' ... and
it's like, well why don' t we receive this care at home? Why couldn 't I have been
told that at home? (FG, lines 306-3 10).

Despite this frustration with local health services, participants voiced a desire to support
their localized healthcare options so they can be proud of their community rather than
having to seek health services elsewhere. As one participant commented, " [Having to
seek healthcare services outside community is] sad cause like, we're trying to have our
own health faci lity io our own community so we don' t have to venture out and go
elsewhere for help. " (FG, lines 311-312).
4.3 Empathy
A third theme that emerged from the research data was empathy . Participants
clearly voiced a desire for a relationship in which healthcare practitioners authentically
demonstrate genuine care and respect for their patients' health and show a sincere desire
and commitment to helping and caring for others. For example, one participant

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emphasized the desire for healthcare providers to make evident a commitment to caring,
through actions, noting,
It's not like I want anyone to go above and beyond for me, like to
exaggerate ... and become close personal friends and stuff. .. I want them to show
why they' re in the profession that they're in through their actions .. .I want them to
show it. (FG, lines 121-126)

In discussions during the theatre workshop, participants described situations
where they felt as though healthcare providers had limited amount of time to spend with
them and as though the doctor was rushing them out of the clinic, which connects to the
feeling of lacking space to ask questions. Such situations fostered feelings of being
unwelcomed to return to the health clinic if they had further concerns. These feelings of
being unwelcomed may mean that a hostile environment is established, which could lead
to serious implications if patients have serious health problems and feel as though they
cannot go to the clinic for help. One participant stated, "it fee ls like you're kind of just on
the clock and [the doctor's] like, you know, 'Make it snappy' ... you just kind of feel like
a number not a person" (Tl , lines 44-47). Participants explained bow such feelings of
being a number or a bother to the healthcarc provider dissuade them from opening up in
an appointment. The idea of being 'a number' is reminiscent of the residential schooling
system, where Aboriginal children were literally identified by a number. While this is no
doubt not the intention of the healthcare system, it further demonstrates how Westernized
healthcare embodies a co lonial system. Participants felt that this could be rectified by
simple gestures that demonstrate care on the part of physicians, for example, as one
participant explained,
I would like it if, you know, they would ask what I'd prefer to be called .. .I don 't
go by my whole name ...just so .. .I feel more comfortable to open up .. .I don't feel

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like opening up to someone who is going to treat me like a number. .. like when
it's more personal problems ... whereas [I would be feel like opening up] if
they ... get down on my level, to where they're like ... ' I really want to help you'
(Tl, lines 48-56).

It is important to consider this comment in the context of intergenerational trauma, as
Aboriginal youth may continue to fee l the repercussions of the residential schooling
system that stripped Aboriginal children of their identity, and relationship to their culture.
Indeed, interactions in the healthcare system in which one is seen, heard, and recognized
as a whole person, and not just a ' number ', was identified as very important to youth.
This type of interaction characterizes 'empathetic' care, which from a youth perspective,
is a concept clearly including a personal dimension.
When considering ideas to act out in the final drama scene that was focused on
"expressing lived experiences of relationships with healthcare providers", participants
took seriously and focused on the theme of genuine caring and 'empathy'. Participants
both expressed feelings of positive and negative experiences of relationships with their
healthcare providers, and felt it important to focus on both in the final dramatic
enactment. Participants offered suggestions of creating a scene in which a health care
provider is taking into account the patient's specific situation and tailoring the course of
action to best fit the patient. This was offered as an alternative scenario to situations
where youth perceived a physician to have self-promoting priorities. For example, as one
participant explained,
I feel like [doctors] have a quota to fi ll, so that they can just get a big pay check or
something ... and in a perfect world I would feel like, you know, [the doctor would
say] "There is this new drug, but based on what you're telling me I would say that
this is not right for you [rather than prescribing the drug because a doctor gets a
profit from it]" {T 1, lines 66-67, 69-70).

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Another quality of empathetic caring described by participants was expressed
through the age-old metaphor of "putting oneself in another's shoes." This point around
empathy arose from discussions in which youth voiced concerns about feeling judged
when approaching healthcare providers and wishing that this were not the case. By
having a healthcare provider hypothetically place themselves in their patients ' shoes,
participants felt that this would contribute to the provider treating patients as they would
want to be treated and this type of practice is what participants seek and desire. In further
discussion about ways for healthcare providers to change their approach, one participant
suggested reflection questions a doctor could be asking themselves saying, " ... Like
would you, [the doctor], want to be treated with this service? ... Would you want to be
talked down to this way or talking as an equal?" (FG, lines 38-39, 41-42).
The type of care desired by youth was exemplified for participants by a particular
nurse in the community. Amanda [name changed for confidentiality], with whom
participants have had many positive experiences, demonstrated what youth felt was an
authentic passion for and commitment to caring for people. This passion and commitment
were illustrated by Amanda through gestures and qualities such as; following up with
patients, providing a comfortable and safe space during appointments, and demonstrating
a genuine concern and care. Words such as "inviting" and "concern" were used to
describe Amanda's qualities of caring. Participants also emphasized Amanda's authentic
care and concern through her continuous desire to provide care beyond the scheduled
appointment. As one participant explained, "even after I didn ' t call her in a week ... she
called me and she said, 'I just wanted to follow up because 1 was really worried' " (T2,
lines 32-33). " ... you could feel the genuine concern and it wasn't uncomfortable to where

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she was ... trying to have a personal relationship, but you could feel like she cared" (T2,
lines 42-43). While participants voiced the desire for personal relationship, they
understood there was a professional boundary that must be maintained in a hcaltbcare
relationship. However, it was clear the participants want a personal and caring
relationship in the context of a patient-physician relationship.
To further explain the kind of empathetic caring that they are looking for,
participants used their own positive experiences with Amanda. They felt she consistently
put herself in their shoes and took into consideration her patients' unique situations. This
approach was especially observed and experienced when participants had concerns about
their children's health. As one participant noted," ... it's like she's thinking of her own
child at that moment," (T2, 44-45). In this sense, participants feel that Amanda
exemplifies what it means to treat patients as she would want to be treated by a healthcare
professional. Indeed, participants positioned Amanda as an archetype of "good care"
explaining that she embodies qualities of an empathetic caregiver by fo llowing up with
patients out of concern. Through lived experience and interaction with Amanda,
participants have formed a vision of a positive and beneficial clinical relationship.
4.4 Empowerment
The theme of fee ling empowered in relationships with healthcare providers
emerged from discussions during the week-long workshop as well as from the final scene
created and delivered by the participants. During discussions, positive experiences with
healthcare providers that lead to feeling a sense of empowerment and control over one's
own health and wellbeing were shared. For example, one participant described a situation
in which she felt empowered by her physician:

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I was seeking counseling from a psychiatrist and I only had to go a few times and
I would say that I was really satisfi ed with it. .. he just kind of asks me questions
and repeats what I am saying back to me till! come full circle ... to where I'm like,
okay, the world 's not ending, and so I don't really ... need to seek out that specific
healthcare because I guess I can do that for myself now and I don' t need to sit in a
room for an hour with, you know, a licensed professional to basically ask myself
these questions until I come full circle. (Tl, lines 2-12).

Participants also understood empowerment as resulting from being respected,
valued, acknowledged and reassured that they are each doing a "good job" as an
individual or as a parent in maintaining good health for yourself and your children. As
one participant commented, "It 's good to hear you're appreciated and the things you're
doing are right and not wrong, cause most people are so quick to tell you 'That's wrong,
you' re doing that wrong' ... " (Tl , lines 26-28). This highlights the importance of positive
reinforcement and recognition in a clinical relationship, especially for young people, as
positively reinforcing one's efforts to maintain a healthy li festy le. Thus, one factor that
contributes to creating an empowering encounter with healthcare providers is focusing on
the positive and what a patient is doing well or 'right. ' This may be linked to traditional
modes of Indigenous teaching, in which children are mentored and raised by their
community through positive reinforcement and "doing when [children] are able"
(Gerlach, 2008, p. 23). Furthermore, Aboriginal cultures value autonomous behaviours in
children, thereby allowing children to learn through doing, rather than disciplining or
punishing (Cheah & Chirkov, 2008).
The importance of promoting and creating empowerment in healthcare was
highlighted especially for situations in which people may not be able to stand up for
themselves in circumstances of inappropriate care, noting, "What if, like, my parents or
my grandmother or grandfather get this crappy care and they can't voice?" (FG, lines

88

293-294). It is also important to note that participants expressed a sense of empowerment
and ownership from being part of this research proj ect. One participant explained their
feelings of being involved in the drama workshop as,
[I] felt like I got to do something towards changing something I really care about,
because we all have that forward way of thinking, like, ' is this bow my kids are
gonna be treated [and] when they have kids is this how my grandkids are gonna
be treated?' (FG, lines 288-290)

In this way, these results not only extend to what participants desire in their relationships
with physicians, but it extends to what they want for their family, community, and for
others.
To finish the drama scene, the youth chose to represent empowerment in their
final tableau. They ended with an illustration of ownership. In this final tableau,
participants emphasized feeling bow empowerment not only connects to maintaining
one's health, but also extends to being able to access the tools and develop confidence to
take an active role in one's health by accessing healthcare and ensuring a positive
experience, which includes recognition and respect. Participants described the emotional
transition from the first tableau to the fina l tableau as one that began with fee lings of
belittlement to feeling control and stability. The stability participants described was in the
sense of feeling confident in their relationships with health providers. Participants
explained this transition as going from what is (current healthcare experiences) to what
could be (ideal healthcare experiences). The research itself, then, allowed for an
embodied experience of transforming orientation to interaction with healthcare providers.
One participant described this transition saying,
I guess going into it I would look very stressed and flustered, you know, I would
be maybe slouching because I feel heavy and then l sit there and I talk to (the
doctor] and, you know, he's just asking me these questions to where I'm kind of

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sitting more and more upright. .. and then I leave walking ... standing upright, the
world's okay. (Tl, lines 15-19).

The final tableau was described with phrases such as "conquering something"
(FG, line17); moving towards breaking tl1rough the glass pane and finally being able to
touch hands, making a connection with the doctor and being able to "communicate rather
than just answering" (FG, line 80). As one participant explained, "I was the doctor. . .I
was the healthcare, she was the patient and finally we've touched base" (FG, lines 2627). Another participant explained the final scene as" ... more of a literal translation, there
was no glass wall there" (FG, lines 73-74). Youth explained these positive experiences as
being ideal situations of receiving hea lthcare services, noting, " ... in a perfect world this
is where I'd want my healthcare to be" (FG, lines 22-23).

It is important to note that while participants discussed many negative
experiences, all discussions ended on a positive note. Youth expressed positive lived
experiences with healthcare providers, such as with Amanda. Through these lived
experiences, youth participants hold insight and knowledge that can contribute to a
conversation around culturally appropriate, youth focused healthcare for their
community.

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CHAPTER 5: DISCUSSION
"The importance ofan intimate relationship between patient and physician can never be
overstated because in most cases an accurate diagnosis, as well as an effective treatment,
relies directly on the quality ofthis relationship. " T. Hellfn
The goal of this research was to explore relationships between Nisga'a youth and
their healthcare providers, particularly physicians, by identifying cultural and/or social
factors that encouraged or hindered meaningful access to healthcare. To collect this
sensitive information, a Community-Based Participatory Approach and decolonizing
methodologies were employed. The data collected was critically read and analyzed to
identify recurring themes. The Nisga'a youth participants identified 'relationships' as
central to their interactions with healthcare providers. Furthermore, participants identified
relationships as having 'multifaceted ' dimensions. These have been identified as:
disconnect from providers, when the body speaks, empathy and compassionate care, and
empowering encounters. In this Chapter, I place the theme 'relationships' in direct
dialogue with the social determinants of health. The qualities of relationships expressed
by participants will be understood as dimensions of the social determinant ' relationships.'
This chapter discusses the themes by engaging secondary research relevant to
understanding the nature of each. It is important to note that the stories and experiences
gathered in tbis study are based on the words oftwo Nisga'a First Nations youth, from
whom generalizations may not be extracted to other First Nations youth. It may
nevertheless be the case that other young First Nations people in Canada share similar
experiences of relationships with their healthcare providers.
5.1 Disconnect from providers
" .. .[healthcare providers] don't have to be so disconnected to where you know, there
may as well be a big glass pane between us" (T2, lines 18-21)

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Disconnect, as an aspect of ' relationships,' is itself multifaceted. When the youth
participants expressed experiences of disconnect from their healthcare provider, they
often and initially chose the word 'disconnected ' (see results). As noted in the quotation
above, disconnect was described as separation from providers by a 'glass pane', implying
that there were barriers to physical and verbal communication. More significantly,
participants expressed their feelings of 'disconnect' as feelings of inferiority or being
looked down upon by healthcare providers. This was evident when participants noted
experiences with physicians who have their "nose in the air all the time" (T2, lines l 0-ll)
and feel ing "belittled" and like "a small little ball where I fe lt helpless and when you feel
helpless you want to return to the fetal position where you fee l safe" (FG, lines 59-62).
While existing research regarding Aboriginal peoples experiences and relationships with
mainstream healthcare systems bas not directly used the word ' disconnect', existing
research has used words such as 'discrimination ' and ' inferior' to describe these negative
encounters (Kurtz, Nyberg, Van Den Tillaart, Mills & The Okanagan Urban Aboriginal
Health Research Collective, 2008; Towle, Godolphin & Alexander, 2006; Browne &
Fiske, 2001). The word ' disconnect', as used by Nisga'a youth participants, could be a
word that carries more meaning for Nisga'a youth to describe negative experiences than
words such as 'inferior' or 'discrimination.' The felt experience of ' disconnect' would
appear to be caused by the experience of discrimination and feeling of inferiority.
Participants did not speak directly to colonialism as a factor to explain their
experiences of disconnect. However, it should be noted that the Nisga 'a First Nation
experienced effects of residential schools, where hundreds of children were taken from
their homeland and relocated to schools across BC as part of the Canadian government's

92

efforts to assimilate Aboriginal children into the Euro-Canadian culture (CBC, 2011). As
mentioned in Chapter Four, participants noted feeling like "just another number", which
could be reminiscent of the intergenerational impacts of the residential schooling system.
Towle et al. (2006) found that Aboriginal people's history, specifically experiences of
residential school, negatively affected relationships with healthcare providers. In
particular, feeling inferior and helpless was identified as having a negative impact on
Aboriginal patients relationship to the healthcare system. Furthermore, there is research
showing how feelings of inferiority, stemming from dominant colonial structures
promoting racism and discrimination, "effectively marginaliz[ing] Aboriginal peoples
from the dominant system of care" (Hole et a!., 2015 p. 1662). It is possible that ongoing
feelings of inferiority and disconnect, as felt by Nisga' a youth, are connected to the
'shadow ' ofthe residential school experience. As discussed in Canada 's Residential

Schools: the final report ofthe Truth and Reconciliation Commission of Canada (2015),
the residential schooling system legacy has had a profound impact, not only on the
survivors of residential schools, but on "their partners, their children, their grandchildren,
their extended families, and their communi ties" (Canada's Residential Schools: The
Legacy, 2015, p. 3). The dehumanizing feelings ofbeing called by a ' number' , once
again, draws attention to the profound impact memories of residential schools continue to
have in Aboriginal communities. Indeed, research has shown how "abandonment and
anonymity in the past [is] remembered in present day experiences with physicians"
(Towle et al., 2006, p. 342).
Although youth participants in this study did not directly cite colonialism as a
factor causing them to experience relationships of feeling unsafe and inferior to their

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physician, connections between colonialism and negative experiences with healthcare
providers have been consistently documented (see Allan & Smiley, 2015). The effects of
colonialism and the Indian Residential School (IRS) system are not only fe lt by those
who lived it, but its effects are also felt by children of parents who experienced it first
hand, that is ' collective trauma.' (Bombay, Matheson & Anisman, 2014). More
importantly, as a central methodology in this research was a decolonizing approach, it is
necessary to acknowledge Indigenous authors who have argued " information about
Indigenous health cannot be understood outside of the context of colonial policies and
practices both past and present", and be taken seriously due to the impact this context has
had on Aboriginal engagement with the healthcare system. (i.e. Indian Act, forced
relocation, residential schooling system; Allan & Smylie, 2015, p. 2).
A 'disconnect' between Aboriginal youth and their healthcare provider, because
of feeling belittled or talked down to, becomes a health issue especially if the experience
of 'disconnect' dissuades Aboriginal youth from trusting their healthcare provider or,
more seriously, leads them to refuse to seek treatment at mainstream healthcare services
which causes them to "set aside their health concerns or delay seeking health services"
(Kurtz et at. , 2008, p. 56; Loppie, Reading & de Leeuw, 2014).
The fact that both youth participants were women must also be noted in
interpreting this theme. The stories told about experiences of disconnect and belittlement
by the Nisga'a women in this work is akin to those of Aboriginal women who access
mainstream healthcare centres in Southern BC. Aboriginal women in the Okanagan
Valley have noted feeling belittled and inferior with their bealthcare providers, and
related these actions of healthcare providers to being Aboriginal (Kurtz et at., 2008).

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Alternatively, similar stories have been expressed from non-Aboriginal women living
with chronic diseases who have experienced relationships with their physicians that
included feeling helpless, disconnected and oppressed due to physicians exercising power
and control over the patient (i.e. acting 'better than' the patient) (Fox & Chesla, 2008).
Furthermore, and as noted by participants in this research, connection to bealtbcare
providers (i.e. feelings of trust, respect and ' being visible') leads women to be more
comfortable in sharing information about their health with their providers and to seek
medical assistance (Fox & Chesla, 2008; Kurtz et al., 2008). All of these stories suggest
that, regardless of identity (but not eliminating the fact that one's identity does play an
important role), the experience of ' disconnect' by women seeking healthcare services, in
particular, can possibly be a gender issue as well. Furthermore, participants in my
research were not only women, but mothers as well. However, it was beyond the scope of
this research to explore bow motherhood impacted the participants ' interactions with
their healthcare providers.
Refusing to seek treatment, due to the experience of 'disconnect' arising from
feelings and experiences of discrimination and inferiority, contributes to and perpetuates
ongoing health inequities experienced by Aboriginal peoples in Canada. Based on
findings of this research, supported by existing research, the theme of ' disconnect', when
interpreted through the lens of social determinants of health, draws attention to bow
continued acknowledgement, and presence, of the effects of colonialism (i. e. residential
schools, structural di scrimination and racism) as a potential determinant in relationships
between Aboriginal peoples and their healthcare providers, continues to be an active
concern for the health well-being of Aboriginal youth. Furthermore, "we must have

95

knowledge of history in order to understand the present" (Caron, 2006, p. 22). This could
include making available cultural education to healthcare providers, and increasing
awareness of Aboriginal youths' lived experiences with their healthcare providers by
supporting and encouraging Aboriginal youth to give 'voice' to their experience of
healthcare.

5.2 When the body speaks - receiving incomplete care
"I always say no when they say 'Do you have any questions? ' ... and then I just
leave ... and then [my family is} like, 'Oh, why didn 't you say that?' when I get
home and vent about it ... and I'm like, 'Cause it just seems like I was draggin out
the appointment."' (FG, lines 146-147, 149-151)

In conversation with youth participants regarding a dramatic scene they created,
in which youth used their bodies, not their mouths, to "do the talking", it was revealed
that body language from a healthcare provider impacted the way participants interacted
with their provider. Participants discussed body language used in their scene to explain
how the 'doctor' character wanted the day to end, noting, "if! [the doctor] stare hard
enough then she (the patient] will just leave" (see results). In addition, participants
embodied and spoke about feelings of"dragging out the appointment" (see results), and
wanting providers to refer them to other healthcare providers who could answer their
questions.
These fee lings of ' dragging' out an appointment were 'felt' through body
language expressed by the bealtbcare providers. Browne, Smye, Rodney, Tang, Mussell
and O ' Nei l (2011) found that Aboriginal peoples were attuned to bealthcare providers
non-verbal gestures including facial expressions, body posture and "the vibes that
providers conveyed" (p. 338). When providers outwardly displayed disinterest or

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boredom, it is very possible Aboriginal patients will ' read' this in the physicians' body
language. Furthermore, research has also documented how 'sensitivity' to bealthcare
providers' body language is especially present in patients from racialized groups
(Dovidio et al. , 2008; O'Neill989; Varcoe, Browne, Wong & Smye, 2009).
The findings of this research around the theme 'when the body speaks' are also
echoed in research by Towle et al. (2006) who found, through their study of doctorpatient communication in Aboriginal communities in Canada, that Aboriginal peoples
were "very aware of the amount of time that physicians dedicated to their
interaction ... Aboriginal peoples were sensitive to signs that they are not being given
enough time and related to the physician trying to get rid of them" (p.343). Furthermore,
Towle et al. (2006) noted that being given enough time with a physician or healthcare
provider is related to a better level of communication between the patient and physician.
Similarly, in conversation with the youth participants in my research, youth expressed a
desire for a better level of communication with their healthcare provider so they wouldn 't
have to feel a sense of dismissal (see results).
The significance of this theme to how Aboriginal youth interact with their
healthcare system is seen in research documenting bow longer clinic visits allow for
increased patient participation and patient education, while shorter visits limit patients'
ability to adequately provide information and ask healthcare providers questions, as well
as increase the risk of providers prescribing inappropriate drugs (Towle et al., 2006;
Dugdale, Epstein & Pantilat, 1999). In my research, participants spoke of experiences
with their healthcare providers in which they felt care from the provider was
'incomplete. ' The experience of the care being incomplete came from not having the time

97

to ask the healthcare provider questions during the appointment because the participant
did not want to feel as though they were "draggin out the appointment" (see results). This
feeling, as already noted, was a result of reading the body language of the healthcare
provider. However, time spent with patients is also an important element in the doctorpatient relationship and is an essential aspect of care (Dugdale, Epstein & Pantilat, 1999).
Spending more time in a visit with physicians has been linked to increased patient
satisfaction, preventative health and decreased malpractice claims by patients (Dugdale,
Epstein & Pantilat, 1999).
A further complication to the experience of incomplete care, which may result
from body language of the healthcare provider, is a result of the geographical location of
the healthcare system. In the community of New Aiyansh, where the research of this
thesis took place, there are limited health services due to it being a rural area. When the
Nisga'a youth participants spoke about bealthcare services outside of their community
and traveling into a bigger city, this was due to the reality of New Aiyansh being a rural
centre.
The experience of incomplete care, in a rural and Indigenous setting, can result
from lack of access to services, scarcity of resources, and inadequate service from
providers in communities that are rural, remote and in northern areas. Research has
shown that, regardless of race, living in a rural location is a barrier to accessing sufficient
healthcare services (Marrone, 2007; Browne, 201 0). Barriers to care in rural areas include
having less healthcare facilities and fac ilities that are more dispersed, limited number of
staff, and higher turnover rates (Browne, 201 0). High turnover and decreased retention
rates of healthcare providers in northern and rural regions are in part due to challenging

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working conditions including "long working hours, a lack of colleagues to share the
workload, the Jack of extra education, difficulties obtaining routine continuing education,
and a perceived lack of opportunities for spouses and children" (Browne, 2010, para. 4).
Given these circumstances, it is imperative that the relationship between the patient and
the healthcare provider is communicative and open so that a full conversation can be had
regarding healthcare decisions.
In this research discussion, the participants expressed that complete care included
physicians referring patients to other healthcare providers if the physician felt as though
they couldn't answer a patients' questions adequately. This patient expectation is
mirrored in a study by Bechtel and Ness (20 10) who found that patients want clinicians to
actively coordinate care across settings, and include patients and family in the decisionmaking. Simply put, "[patients) want their doctors and other providers to talk to each
other" (p. 916). However, when body language is language that says 'stop draggin this
consultation out,' and the context of the healthcare system is a rural one, the implications
of 'body language' for incomplete healthcare becomes a major healthcare concern and
has a negative impact on health and well-being.
It should be noted that Indigenous peoples, globally, experience the feeling they

are not given an adequate amount of time during an appointment to discuss concerns with
their healthcare provider (Shahid, Finn & Thompson, 2009; Simonds, Christopher,
Sequist, Colditz & Rudd, 2011 ). Simonds et al. (20 I 1) found that positive clinical
interactions between Native Americans and their healthcare provider included the
provider being thorough and ensuring that they covered a range of items including asking
the patient if they have any questions, ensuring the patient understands all information

99

given, and providing patients with educational information and advice. Additionally,
healthcare providers noted the positive benefits of spending a little extra time with their
patients to ensure patients are not left with questions and increase patients trust in their
providers (Simonds et al., 2011).
Body language is an important dimension of 'relationship' between a patient and
the healthcare provider. When a patient reads a healthcare providers' body language that
appears to be expressing that the provider is not interested in 'completely' helping them,
this body language becomes a social determinant in the healthcare of the patient. This
social determinant of health can lead the patient to feel insecure about asking healthcare
provider questions important to their health. In addition, when a patient withdraws from
the interaction this can lead to patients being dissuaded from accessing healthcare
services. In this situation, a patient is left experiencing 'incomplete' care.
5.3 Experiences of empathic and compassionate care
'' ... you could feel the genuine concern and it wasn't uncomfortable to where she
was ... trying to have a personal relationship, but you could fee/like she cared" (T2, lines
42-43)

A repeated theme in the data was desire for a relationship with healthcare
providers based on empathy and compassionate care. Implicit in participants ' discussion
on compassionate and empathetic care was how they were more likely to open up and be
comfortable with bealthcare providers who showed that they genuinely wanted to provide
good care for them.
Components of empathy for healthcare providers include compassionate care and
putting oneself in the patients' shoes. (Hojat, Gonnella, Nasca, Mangione, Vergare, &
Magee, 2002). In this discussion, however, empathy and compassionate care are used

100

interchangeably. As expressed in the quote above, research participants described
experiences when healthcare clinicians provided empathetic and compassionate care.
A patient's desire for empathetic and compassionate care is not trivial. In the
opening quotation, the research participant used the expression "genuine concern" when
speaking about a positive experience she had with a healthcare provider. It was clear
from the conversation with participants that what they desired in interactions with
healthcare providers was authentic care. Authentic care is empathetic care;
compassionate care.
Research bas overwhelmingly shown that patients, regardless of ethnicity, want
compassionate care. Compassionate care includes healthcare providers getting to know
the patient, feeling the patient's suffering, identifying with and liking patients, and
demonstrating respect (Sinclair et al., 20 16). In my research, an understanding of genuine
concern also expresses the experience of compassionate care.
Sinclair et al. (20 16) found in their review of literature around compassionate care
that a common conclusion of many studies is that compassionate relationships are
"marked by meaning, a genuine sense of care for the patient, and a willingness to provide
support" (p. 8). In my research, participants described compassionate care as health
providers "putting themselves in the patients shoes" (see results). Research literature has
shown that a common analogy, to illustrate "the relational aspect of compassion" is that
ofhealthcare providers 'putting themselves in the patients shoes' (Sinclair et al., 2016, p.
8).
Nisga'a First Nations youth in this study discussed the desire for caring
relationships that go beyond simply treating the illness of the patient. Participants

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illustrated this 'care' as including a personal dimension. Some authors have suggested
greater levels of empathy and care are needed when treating minority populations,
especially Aboriginal peoples, as this fosters trust in the patient-clinician relationship
important to effective healthcare delivery. This finding is echoed in the work of Towle et
al. (2006) who found relationships between Aboriginal peoples and their healthcare
providers were strengthened when there was a 'personal' component, and when the
provider spent time investing in the relationship. Youth participants in my research study
described a caring relationship as the physician putting aside their own self-promoting
priorities (see results) and not just prescribing a drug for their own gains. This finding
was also mirrored in the work of Towle et al. (2006) who found Aboriginal peoples
interpreted physicians rushing them out of the appointment negatively, extending to the
medical profession as a whole and as "how much money doctors make or how quickly
doctors prescribe drugs as the solution to the problem" (p. 344) rather than putting the
care of the patient first.
A determinant of health important to understanding participants' experience of
their healthcare interactions was the rural nature of their community, as expressed in the
previous section. This geographical determinant (see de Leeuw, 2015) impacts the
patient's expectation to establish a caring, ongoing relationship with healthcare
practitioners, especially in situations of increased staff turnover. A study in Australia bas
shown that Aboriginal patients in a Western hospital setting, where there exists high staff
turnover, felt a lack of care by physicians. Researchers note that this could have "a
particular impact on Aboriginal people because of the importance placed upon
relationship within their culture" (Sbabid, Finn & Thompson, 2009, p. 567).

102

Although participants did not explicitly do a cultural critique of their healthcare
providers it is known, nevertheless, that healthcare culture that has been "imported" has a
different value structure than that of First Nations culture. Lo and Stacey (2008) comment
on the fact that healthcare has been standardized to produce professional, skilled and
quality healthcare systems, that minimalizes the importance of cultural considerations.
Research over the past few years has stressed the importance of culturally competent and
safe healthcare, however, Lo and Stacey (2008) argue that cultural competence has been
constructed in 'scientific ' and 'formulaic' terms, rendering "medical practice culturally
insensitive in the first place" (p. 753). Indeed, this creates "culturally inappropriate and
unsatisfactory interactions", as was revealed in my data of participants stories of being
treated like a number, feeling inferior and feeling like they are a burden rather than a
person. Recognizing relationships as social determinants of health exposes the cultural
and social factors impacting the youth patient-physician interaction, and is undoubtedly
important. Empathy has been positioned as a moral concept, and as such, "may have little
space within the logical, economically driven, and almost impersonal structure of health
systems" (Kendall & Barnett, 2014, p. 448). Furthermore, Cherry (1997) writes
interactions that lack empathy are unavoidable given that health-care relationships are
temporary encounters based on a clinical need. Cherry (1997) goes further to explain that
a Jack of empathy is necessary to provide professional, skilled and quality healthcare
systems.
5.4 Empowering encounters

" ... !would be maybe slouching because Ifeel heavy and then I sit there and I talk
to [the doct01} and, you know, he's just asking me these questions to where I'm
kind of sitting more and more upright ... and then I leave walking ... standing
upright, the world's okay". (TI, lines 15-19).

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As described in my findings Chapter, the theme 'empowering encounters' was
acted out and embodied in a short scene created by participants. In the scene, youth
participants touched hands, representing a connection with their healthcare providers and
a feeling of having "conquered something" (see results). This scene revealed how
interactions between young Aboriginal women and the healthcare provider could
'empower' them in taking responsibility for their well being.
One aspect of empowering clinical interactions is being visible and acknowledged
as a person. This was implicit in the youths' description of positive experiences of
relationships with their providers. The idea of being "visible", "heard" and,
acknowledged resonates with research done with Aboriginal peoples and their
experiences with healthcare providers. Urban Aboriginal respondents in British
Columbia's Okanagan Valley described positive experiences with healthcare providers as
being visible in care, with visibility being "a metaphor for being seen as Aboriginal,
beard, and respected" (Hole et al. , 2015, p. 1666). This sense of being visible as an
Aboriginal patient transferred to feelings of cultural safety as well as being respected,
listened to, and treated like a 'human being', all ofwhich lend to positive relationships
with the healthcare provider (Hole eta!., 2015; Bechtel & Ness, 2010). This stands in
stark contrast to the glass wall metaphor explained by participants (see results), where
only being 'seen' was limiting because participants ' felt like as though they were
unheard. Youth participants discussed bow positive relationships, built upon being given
the tools, developing confidence, being acknowledged and taking ownership of one's
own health, is an expression of an empowering encounter.

104

The theme of empowering encounters also relates to a body of recent research
drawing attention to 'patient-centered' care, or 'whole-person' care, in which the patient
is seen as a partner in the doctor-patient relationship, rather than a "thing" to be dealt
with (Bretchtel & Ness, 2010). The work of Chen, Mullins, Novak, and Thomas (2016)
draws attention to the importance of using a social determinants of health framework
when thinking about determinants in patient-physician relationships because this
framework takes into account wider socio-political, and cultural contexts in which people
live and experience healtbcare. Furthermore, the multidimensional framework, proposed
by Chen et al. (2016) places the patient at the center of care, and draws attention to the
dynamic in the patient's bealthcare experience that includes roles of the provider,
community, and social and physical environments. This research has shown bow
"healthcare providers, community environment, and the healthcare delivery system can
individually or simultaneously influence patients' knowledge, confidence, or self
determination to improve patient activation and empowerment" (Chen et al., 2016, p. 28).
This research is important to interpreting my fmdings to show youth want healthcare
providers who empower them to take control of their own health. It was clear in my
research how participants expressed their expectation to exercise self-determination and
to make autonomous decisions promoting their wellbeing. Current attention in healthcare
research focusing on patient engagement and active participation in exercising selfdetermination and autonomous decision-making has been described as the "blockbuster
drug of the century" (Chen et al., 2016). This expression highlights how ' relationship '
with its multi-faceted dimensions, is a significant social determinant in the culture of
patient-physician interaction.

105

It should be noted that the experience of empowerment with healthcare providers
is not something only desired by Aboriginal peoples. Work by Stubbs (2007), showed
that when middle-aged people with diabetes experienced a positive working relationship
with their healthcare provider, the patient felt more motivated to take control of their
health and make lifestyle changes. Furthermore, when physicians prescribed patients'
medications rather than encouraging patients to change their diets and lifestyle, this
translated into patients being less compliant with physicians ' recommendations and
feeling their "sense of responsibility diminished and motivation decreased" (Stubbs,
2007, p.l95).
Conclusion
This research has identified how ' relationships', as a social determinant of health,
are multifaceted, and central to interactions between young Nisga'a First Nations women,
and their healthcare providers. Furthermore, the thematic dimensions of ' relationships'
discussed in this Chapter (i.e. disconnect, when the body speaks- incomplete care,
empathy and, empowerment) are interconnected. In the fi nal Chapter, I will discuss
limitations of this project, and include considerations and recommendations for future
research.

106

CHAPTER 6: LIMITATIONS, CONCLUSIONS AND FUTURE DIRECTIONS
6.1 Limitations, Challenges, and Learnings

"Finding an appropriate balance between the requirements ofethical research and the
requirements ofacademic success can be challenging, particularly for novice
researchers" Ballamingie and Johnson, 2011, p. 71 I
When I began this research project, I was excited about the opportunity to be able
to come to know First Nations youths' lived experiences about their bealthcare system.
As I come to the end of this research journey however, I have come to realize that I was
naive about how complex my research undertaking, in fact was. The above quotation,
taken from Ballamingie and Johnson 's (201 1) The Vulnerable Researcher: Some
Unanticipated Challenges ofDoctoral Fieldwork, contextualizes my present reflections
on what 1 believe are significant limitations of this research project. The breadth of the
ethical dimension of my research, especially in terms of honoring the realities of powerdynamics between researcher-community/researcher-institution and the culture of a rural
First Nations community, is one that has profoundly affected my perspective on the
research I have done. Upon reflecting about limitations of this project, and in light of
Ballamingie and Johnson 's (2011) quotation, I believe there is an imbalance between the
requirements of ethical considerations important to non-Indigenous researchers in an
Indigenous cultural context, and in my understanding of what was required for academic
success in this research project.
The fi rst encounter with my naivety, regarding the ethical dimension of this
project, occurred when my participants expressed discomfort with signing the consent
form, where audio-recording was already approved by the UNBC Research Ethics Board.
I was surprised I had to confront concern with being audio-recorded. It was my

107

understanding that the consent fom1 clearly stated that audio-recordings would only be
used by the researcher, and would not be shown to anyone else. I did not anticipate my
participants would have concerns with my research data-collection strategies. As a novice
researcher, I did not know bow to validate their concerns. When I reflected on my
participants concern in light of decolonizing methodologies, I experienced vulnerability
concerned with not wanting to appear to be acting deviously in how I was collecting data
for this project.
Although this misunderstanding with my participants was addressed, I felt it
became a limitation to collecting the most reliable data. By having to handwrite
conversations, I could not be an authentic conversation partner. I found myself in a
research position of having to 'probe' for more information. When I tried to probe,
participants expressed, indirectly, impatience w ith having to repeat what they had said
and give further explanation when they felt they had been clear. Given my findings that
participants placed great emphasis on relationship and not wanting to feel disconnected
from their healthcare provider, I was left wondering if this was an experience I too set up
for them. I believe I could have understood better the experiences of participants, had I
been able to become even more of an authentic conversation partner.
Even though I have had to confront my sense of vulnerability through this
research, this 'limitation' bas also been a positive learning experience for me as
researcher in a First Nations context. I have learned the necessity of engaging First
Nations youth participants in all stages of the research process, including the design and
wording of giving consent to research done by a non-community member researcher.
This, in tum, made me reflect on the use of formal consent forms.

108

As Miller and Bell (2002) explain: "Whilst ethics committees increasingly require
researchers to produce consent forms for them to vet and for research participants to sign,
the formality of such procedures will certainly alienate some groups and individuals" (p.
65). Given that this research project employed a community-based, participatory
approach, and was based in decolonizing methodologies, I now believe it is necessary to
consider alternative approaches to gaining consent to undertake research. In particular,
there must be great sensitivity to how research language and perception of research
methodology is interpreted by the participants. This underscores the importance of
relationship building and discussions with the community involved in the research as to
what kinds of communication methods are preferred (i.e. writing, verbal). Furthermore, I
have learned the importance of sitting down and going through consent forms WITH
participants, to ensure clarity and understanding of the content and implications of
consent forms.
Another challenge of this research project was that of employing a communitybased participatory research methodology. While the CBPR research methodology is
especially needed in the context of research with Indigenous peoples, I have come to
question whether this research methodology can be most appropriately and ethically
employed, especially in the context of graduate level research. I found one of the biggest
limjtations of using CBPR was 'time.' Community-based participatory research is based
on principles of equitable participation and co-learning, and requires an honest and
authentic relationship between researcher and community. However, to achieve such a
partnership, time is required to build relationships with community members. As an
'outsider' and an outsider with limited time and resources, I was not able to cornmjt to a

109

time allocation to be in the community of New Aiyansh prior to beginning the research.
This proved to be a limitation as I was someone unknown to the community, which may
have dissuaded people from participating.
Recruiting Nisga'a First Nations youth between the ages of 19-25 was
challenging, and I learned that this population is very hard to get in contact with. In
conversation with participants and with my community guide PC, after the drama
workshop, I was told that there are not a lot ofyouth ages 19-25 in the community, as
most leave to find jobs. This was very important information to know, as the community
might have benefited more if the age range was left open, and younger youth and adults
could participate. However, including younger people in research (i.e. under the age of
18) is a significant challenge as there are multiple ' ethical' guidelines that must be
followed (as outlined by the UNBC Research Ethics Board). This could be one reason
why youth voices are so Jacking in research scholarship. Although I did open up the
workshop to anyone interested, it was not until after I got to the community and started
the workshop, which ended up being too late of notice for people to participate. Building
relationships with communities BEFORE the process, and constantly working with
community partners is invaluable, as you gain information about what will best serve the
community, and in tum possibly receive more participation. Although this ' lesson' bas
been learnt by many other researchers, and I was aware of it before starting the project
and had intentions to spend time in the community before the research began, I felt
constrained by the resources and time I had to complete this masters level project.
Therefore, I was not able to fulfill this aspect of CBPR.

110

In addition, the community data collection part of the project was completed in

only four days. While participants shared many incredible stories and experiences of
relationships with their healthcare providers, I am mindful this project only 'skimmed'
the surface of collecting data relevant to my research focus. I am well aware how the data
from this project, while incredibly valuable, may not tell ' the whole story.' More
significantly, an incredibly important aspect of CBPR is providing participants the
opportunity to review the data and results. This is an important 'member check' to ensure
what bas been recorded and interpreted is accurate and valid. The findings and
interpretation of research data in this thesis does not have a member check. Participants
were e-m ailed on two occasions, twice requesting their review of find ings and
interpretation. However, participants did not reply to this request. This is another
challenge of working with youth, especially youth who reside in a rural community
where there is no cellular service, and limited Internet connection. I believe the absence
of the member check bas real 'ethical' implications for this research report, especially in
light of the CBPR and decolonizing methodologies that are meant to ensure that research
findings honour the culture in which the research was undertaken. This 'ethical concern'
has weighed on me, as I strongly believe that what I have written is not entirely valid
until I receive confirmation of accuracy from my participants.
Finally, an aspect ofCBPR is that it be 'action ' oriented. Although an important
aspect of this proj ect was devising strategies with youth for their healthcare providers, a
concrete action plan was not developed. However, the themes that emerged from the data
do suggest strategies that could be developed to improve youth patient-healthcare
provider interactions.

111

I am well aware that this research project is relying on data from only two
participants, however, the lived experience of anyone, even a single person, has value and
merit, and should not be dismissed as insignificant. While I did not ask participants to
identify the sources of their perceptions and lived experiences with healthcare providers,
I do not believe this to be a Limitation because this information is not relevant to data
collected in this project.
6.2 Conclusions and Future Directions
This thesis project explored the lived experiences of two Nisga'a First Nation
youths' relationships with their healthcare providers. The rationale for this project is that
youth voices, observations, and insights are largely absent within published literature on
patient-physician relationships with Aboriginal peoples and their non-Aboriginal
healthcare providers. This has resulted in an unfortunate and substantial gap in research.
A focus on relationships with healthcare providers from a Nisga'a youth perspective was
timely and appropriate, as research priorities continue to emphasize youth inclusion and
engagement in Indigenous health (Worthington et al. , 2010). It is important to note that
the stories and experiences gathered in this study are based on the words of two Nisga'a
First Nations youth, from whom generalizations may not be extracted to other First
Nations youth. It may nevertheless be the case that other young First Nations people in
Canada share similar experiences of relationships with their healthcare providers.
Three methodologies built the philosophical foundation of this research. These
include a Social Determinants of Health framework, Community-Based Participatory
Research, and Decolonizing approaches. These methodologies informed my choice of

112

using arts-based methods (Muirhead & de Leeuw, 2012), specifically devised theatre.
Other methods chosen, and informed by CBPR and decolonizing approaches, included an
open dialogue and personal field notes, and observations.

In analyzing three data sets, including transcripts from group discussions during a
weeklong devised theatre workshop, transcripts from an open dialogue post-workshop,
and personal field notes and observations, four key themes emerged that exemplify
Nisga'a First Nations youths' experiences of relationships with healthcare providers in a
Northern British Columbia Nisga 'a First Nations community. These themes include:
disconnect, when the body speaks: incomplete care, empathy and, empowerment. It was
discovered that Nisga'a youth participants identified 'relationships' as a determinant of
their interactions with healthcare providers. The discussion has demonstrated that
'relationship ', as a social determinant of interaction between patient and healthcare
provider is multifaceted. The dimensions of relationship identified in this discussion are
interconnected. Research put into conversation with these dimensions of relationship in
patient-healthcare provider interaction has amplified 'relationship' as a social
determinant of health ' needing serious consideration in appreciating the patienthealthcare provider interaction among Nisga'a youth.
This research also makes valuable methodological contributions. One aspect of
this research was integrating decolonizing methodologies and a social determinants of
health framework into a community-based participatory research approach to facilitate a
devised theatre workshop strategy to encourage Nisga'a First Nations youth 'to tell
stories' about their lived experiences of interactions with health providers. Devised
theatre proved to be a successful strategy to engage youth participants in story telling

113

about their interactions with healthcare providers. Furthermore, this strategy gave the
youth participants ' ownership over the research environment. What is notable is
participants ' description of devised theatre as providing a fun and engaging way to
express lived experiences. Participants noted that "[devised theatre] gets things across
more, and on a physical level. .. people are visual learners and they're more likely
to ... relate" (FG, lines 322, 333). In addition, and as noted in the results, participants
voiced a sense of ownership over the research process, and as one participant put it, "we
were contributing to something important" (FG, line 286). Indeed, this project has added
the voices of two young Nisga'a First Nations women to the public record.
No research study is complete in and of itself. This research project opens the
door for opportunities for research to further understand how relationships, as a social
determinant of health, impacts Nisga'a First Nations youths' interactions with their
healthcare providers. In addition, this research can also identify lessons learned in
engaging Aboriginal youth- a voice so lacking in existing research scholarship:

•

As noted in my find ings, participants spoke of feeling like a 'number' in their
interactions with healthcare providers. This furthers the need to appreciate bow
the legacy of the residential school system continues to impact First Nations
youth, and how they perceive their interactions with their healtbcare provider.

• In collection of data from the research, the focus was on participants'
relationships with their healthcare provider. The circumstance of all participants
being mothers was noted, but not explored as a factor impacting their relationship

114

with healthcare providers. Further research could investigate the "motherhood
factor" in patient-healthcare provider relationships between Nisga'a First Nations
youth and their providers.

•

More arts-based, and participatory methods (especially theatre) are important to
use when including Nisga'a First Nations youth in research. In this research,
feedback from participants on the drama workshop was very positive, with one
participant noting, "I very much enjoyed [the drama workshop] ... cause I felt like
I got to be silly and it didn't feel like work at all and it just felt like, you know,
games, but it was leading up to something" (FG, lines 269-27 1). Furthermore,
participants spoke of their involvement in the drama workshop as having ' me
time' and 'adult time' away from their children and partners. This is important to
note because I believe there would have been less participation if this project used
a survey or questionnaire to collect stories of youths' experiences with their
healthcare providers. Therefore, my recommendations for future research
including Nisga'a youth voices include using arts-based, participatory methods.

115

APPENDIX I. NORTHERN HEALTH AUTHORITY SERVICE REGION

Map ofNorthern British Columbia Health Service Distribution Areas (Northern Health,
N.D.)

116

APPENDIX II. LOCATION OF NASS VALLEY IN BRITISH COLUMBIA

Nis~a 'a Nation

Nass Valley
• Terrace

BRITISH COLUMBIA

Screenshot of Map Indicating Location of the Nisga·a Nation Nass Valley in British
Col umbia (N isga·a Lisims Government. n.d.)

117

APPEN DIX Ill. LETTER OF CONSENT FROM NASS VALLEY

WJLP WILXO'OSKWH L NISGA' A INSTITUTE
"' Rqoolmd '«!d) ....
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lilt""'""'
t.-~ .. Ill

a.......

r.o.fto, 701JOOtls'oohlTs'ap
Cm.illl..i.blk1o , B.C. \'OJ l AO
l'llciM (1!0) ~!292
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(2.~)63>246.\
\\ l'b!Jtt: ,.WftLIM:.nl

Julia Petrasek MacDonald
MSc (Convnulity Heallh) Candidate
Health Arts Research Centre

June 4, 2015

Northern Medical Program
Dear Jule Petrasek MacDonald
The Wilp Wlf!ooskwhl Nrsga a fY'N'/N) Board d GoYemors met May 25 2015 and I am pleased to
1nform you that your research prcposai'Stag1ng Relatoosl\1ps USIIlg Devised Theatre 10 Explore
IndigenOUs Youths Expenenoes and Perceptions of their Relabooships with PtrySICians' had been
approved pend1ng approval from UNBC Researdl EthiCS Board You wiU be expected as a c:ordtion of
your research lD worit closely wdh 'WWN as ~• as p!O'IIde lhe findtngS from '((XX researd1
Please see attached motion:

MSC!L_
Thew~ Wt(.o oskwhl N!Sga a lnsnMe Board d Olre<*WS approves Juia Petrasek MacDonald s

research proposai ' Stag1ng Retanonshtps USIIlg Devised Theatre to Explore lndtgenOUS Youths
Experiences and Pefrept10ns of ll'lN RelabOnshlps wrth Physicians' pendng approval of UNBC
Reseatth EthiCS Board
MSC14 Stephen Azak I Noah Guno
Congratulabons'

CC 'NNN F-.

Letter of approval from the WWNJ Board of Governors

118

APPENDIX IV. OPEN DIALOGUE QUESTIONS

I. Tell me about the scenes you made.
a. What was it about?

2. Do you think the scenes accurately portrayed experiences you have had with
physicians/healthcare services in your community?
b. How does your personal experience differ from the experience/meaning
portrayed in the scenes?
3. What is the main message you wanted the scenes to convey?
a. What is the main message you think the scenes actually conveyed?
4. Did you enjoy the drama workshops?
a. What part did you like the best? Why?
b. What part did you like the least? Why?
5. How would you describe the experience of creating the scenes?
6. Were there any aspects of making the scenes that you found difficult?
a. If so, what were they?
b. If so, how did you overcome these challenges?
7. Were there any aspects of making the scenes that you found easy?
a. If so, what were they?
b. If so, why?
8. How did you feel about being involved in this project before the process
began?
c. During the process?
d. After the process?
9. Would you use theatre to share your experiences and ideas again if you bad
never participated in this process?

119

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