BEYOND THE HORIZON:
THE GREATER INVOLVEMENT OF PEOPLE LIVING WITH HIV/AIDS IN
WESTERN CANADIAN COMMUNITIES

by

Christal Capostinsky
B.S.W., University of Northern British Columbia, 2008

THESIS SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SOCIAL WORK

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
April 2013

© Christal Capostinsky, 2013

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ABSTRACT

The implementation of the Greater Involvement of People living with HIV/AIDS
(GIPA) in northern communities can have many challenges. This research looks at
the process around the implementation of GIPA in these communities. This includes
looking at GIPA within the context of the definition of rural and north, and the social
determinants of health that impact populations infected and affected by HIV/AIDS.
Using focus groups, service providers in western Canadian communities were
asked specific questions regarding the implementation of GIPA in their communities.
By applying this qualitative method I was able to explore the research using an
Autoethnographical lens. Stories were shared and ideas were generated for
strategies to address the issues around implementing the GIPA principle.
A thematic analysis looked at the importance of GIPA; the benefits of the
involvement of people living with HIV/AIDS (PHA’s); the challenges of working with
PHA’s; the existing barriers to PHA involvement; skills and capacities; and, the
assistance needed for successful implementation. The results indicated that in
smaller northern and rural communities the barriers exceed the capacity o f AIDS
service organizations to use GIPA to its greatest potential. Recommendations of this
study include: advocating for a more supportive government; increased funding
opportunities; and determining a way to share the experiences of GIPA among other
rural and/or northern Canadian communities.

iv

A little bit of this...a little bit of that...

How wonderful it is that nobody need wait a single moment before starting to improve
the world. ~Anne Frank

Social work is a profession that aims to increase the well-being of people, both
individually and collectively. Its roots are entrenched in a comradeship to achieve
social justice. It is fueled by compassion, strength and determination. This is what I
think of when I look back at the many years of the AIDS movement in North America.
So many people have fought valiantly for justice and equality for those living with
HIV/AIDS. Throughout the years many of them have passed and others have picked
up their torches and carried on the fight. This thesis is a venue for me to not only
challenge myself to learn new things, but also to self-reflect on my personal
experiences and knowledge around HIV/AIDS. My opinions and biases are
paramount to acknowledge in this profession as I strive to be a catalyst for change
within the movement and the community work that I engage in.
I have chosen this topic because I have a personal connection to it. My
knowledge around HIV/AIDS is very broad based and subjective. I have been HIV
positive for 17 years. I have been involved in the AIDS movement for more than a
decade. My involvement includes being a part of local, provincial and national
organizations and groups.
The first organization I became involved with was in 2001 in Prince George,
British Columbia. It was then known as AIDS Prince George. Since then they have
changed their name to Positive Living North: No kheyoh t'sih'en t'sehena Society. I

volunteered there before I accepted a job as the peer support worker. It gave me an
opportunity to learn more about the dynamics of the disease and how it affected
different populations in unique ways. I have always been an eager student to learn
more about things from different perspectives. I know that my experiences living with
HIV are not the same as others, though we may share similarities. As I mentioned
earlier, HIV/AIDS affects populations differently. Examples include, but are not
limited to: Aboriginal, non-Aboriginal, women, men, seniors, youth, heterosexual, and
same-sex attracted. Environment and geography should also be included in this
breakdown. I think that every population of people living with HIV/AIDS has their own
set of challenges. Not one is necessarily more significant than the other.
Since Positive Living North, I have been involved in groups provincially and
nationally. I was on the board of directors for four years at the Canadian AIDS
Society in Ottawa, Ontario. The Canadian AIDS Society acts as national voice for
people living with AIDS and their allies. Its membership consists of more than one
hundred AIDS service organizations across Canada. I was also a Canadian AIDS
Society representative on the Canadian Treatment Action Council in Toronto,
Ontario. I have had the opportunity to meet a great many people, from all walks of
life, at the forefront of this movement.
I was also a representative on the board of directors of the Positive W om en’s
Network based in Vancouver, British Columbia. They provide services to women both
locally and provincially. It provided me an opportunity to take a closer look at, and
become more versed around the issues that HIV positive women encounter. Some

of the challenges women face includes biological vulnerabilities, sexual stigma,
power imbalances and invisibility among the infected.
In 2005 I started an organization in Prince George, British Columbia known as
the Prince George New Hope Society. It was created for and by street involved
women and youth. HIV/AIDS was just one of the many issues addressed. Over the
years I have been involved in numerous committees and research projects that have
added to my experiences, given me a voice, and shaped my practice. I feel
honoured to have had the experiences that have shaped me and I remain very aware
that not everyone has had such privilege.
In regards to my opinions, that is just what they are...m y opinions. I am careful
not to state anything that I cannot reinforce with either anecdotal or academic
reference. By no means am I perfect or knowledgeable in all things. I am continually
learning new things. It is important for me to be able to see beyond the things that I
have learned because that is when growth happens. My thesis is based not only
around my knowledge, but around the knowledge of others. I can only share what I
have learned throughout my journey thus far. There is a whole wide world of
knowledge out there ready for me to access and share with people. I do this to not
only help myself, but to help those who have not found comfort in living within the
construct of HIV/AIDS. Hopefully my research will be a valuable academic
instrument that may be used by students and organizations across Canada.

A moment of silence...
a sheet of heartfelt dedication...
for those who fought valiantly and died of AIDS.

TABLE OF CONTENTS
A B S TR A C T........................................................................................................................................................ iii
TABLE OF C O N T E N T S ................................................................................................................................ viii
G LOSSARY....................................................................................................................................................... xii
A C R O N Y M S ..................................................................................................................................................... xv
ACK N O W LED G EM EN TS............................................................................................................................ xvii
IN TR O D U C TIO N ...........................................................................................................................................xviii
CHAPTER O N E .................................................................................................................................................. 1
Human Immunodeficiency Virus (H IV )......................................................................................................l
The Beginning.................................................................................................................................................3
Statistics.......................................................................................................................................................... 4
HIV and Social W ork..................................................................................................................................... 5
Greater Involvement of People Living with H IV (G IP A )...................................................................... 10
GIPA and the Northern Context............................................................................................................... 12
Definitions...................................................................................................................................................... 12
The Challenges of HIV in the Rural and Northern Context........................................................... 15
Moving Forward....................................................................................................................................... 18
CHAPTER T W O .............................................................................................................................................. 20
GIPA Literature Review..............................................................................................................................20
Implementing G IP A .................................................................................................................................20
Benefits of G IP A ...................................................................................................................................... 22
Challenges of G IP A ................................................................................................................................23
Social Determinants of Health.................................................................................................................. 26
Income and Social Status..................................................................................................................... 27
Social Support Networks....................................................................................................................... 27
Education and Literacy...........................................................................................................................28
Employment/Working Conditions.........................................................................................................29
Social Environment.................................................................................................................................30
Physical Environments...........................................................................................................................31
Personal Health Practices and Coping Skills....................................................................................32
Healthy Child Development.................................................................................................................. 32
Health Services........................................................................................................................................ 33
G en der.......................................................................................................................................................34
Culture........................................................................................................................................................35

ix

CHAPTER T H R E E ...........................................................................................................................................37
A Comparative Analysis............................................................................................................................. 37
Study O ne..................................................................................................................................................37
Study Tw o..................................................................................................................................................39
Study Three...............................................................................................................................................40
Comparative Analysis.............................................................................................................................41
CHAPTER F O U R ............................................................................................................................................ 45
Research Methodology & Design............................................................................................................ 45
Introduction to Research........................................................................................................................45
Research Method.................................................................................................................................... 47
Sam ple....................................................................................................................................................... 50
Focus Groups...........................................................................................................................................51
Process of Validation.............................................................................................................................. 53
Process of Analysis................................................................................................................................. 54
CHAPTER F IV E ...............................................................................................................................................56
Findings......................................................................................................................................................... 56
Whitehorse, Yukon.................................................................................................................................. 56
Grande Prairie, Alberta...........................................................................................................................61
Grande Prairie.......................................................................................................................................... 64
Fort McMurray.......................................................................................................................................... 65
Peace River...............................................................................................................................................65
Smithers, British Columbia.....................................................................................................................69
Prince George, British Columbia..........................................................................................................73
A Study Analysis.......................................................................................................................................... 77
Importance of G IP A ................................................................................................................................ 77
Benefits to PHA Involvement................................................................................................................ 78
Challenges in working with PHA’s .......................................................................................................78
Barriers to PHA Involvement................................................................................................................ 79
Skills and Capacities............................................................................................................................... 79
Assistance needed.................................................................................................................................. 79
CHAPTER S IX ..................................................................................................................................................81
Conclusion.....................................................................................................................................................81
R E FE R E N C E S .................................................................................................................................................87
APPENDIX A .......................................................:.............................................................................................94
Focus Group Research Questions..........................................................................................................94

Informed Consent to Participate in Research

Till We Meet Again
Gone but never forgotten
Faces that we will remember forever
For the lives they had were not who they were
Friend, sister, brother, they were and will always be
Glitters that shine bright in the night sky
Waiting...
For the comfort of our prayers
The streets were only but a home for their lost souls
Wandering aimlessly
Searching for something or someone to believe in
They were warriors
Men and women standing in the face of a nation risen against them
Their stories will not be untold
Stamped out in the ashes of their deaths
This is not goodbye
Only till a moment in time when we meet again

Christal Capostinsky
April 2007

GLOSSARY
Advocacy: according to McClelland & De Pauw (2010), advocacy is “a process
aimed at changing the attitudes, policies, laws and practices of influential individuals,
groups and institutions for the betterment of people affected by the issue” (p. 53).
Client - according to the Canadian Association of Social Workers (2008), a client is
“a person, family, group of persons, incorporated body, association or community on
whose behalf a social worker provides or agrees to provide a service or to whom the
social worker is legally obligated to provide a service”.
Community - A sense of belonging to something as a collective. This can be a
place where people reside (a location) or something that requires participation.
Some examples of community include towns, cities, ethnicities, common interest
groups, and institutions.
Culture— culture has many complex definitions. I have learned that it is not just one
thing or one way of understanding something. Culture is different for everyone as
individuals and groups. It is the beliefs, values, traditions, community, skills,
language and all the things that allow us to thrive in our lives. It reflects our history
and traditions, as well as societal norms.
Discrimination - an outcome of stigma. According to a report from CATIE (see
acronyms p. 13), “when people act on their prejudice, stigma turns into
discrimination” (2010, p. 22).
Endemic - belonging or native to a population or region.
Harm reduction - for the purpose of this document, harm reduction means
strategies for reducing harm from drugs and/or alcohol. Examples of this include

needle exchanges, injection sites and methadone programs and designated driving
campaigns.
Heterosexism - the act of discrimination against homosexuals by heterosexuals with
the belief that heterosexuality is the only acceptable choice.
Homosexual - This term was used in the research questions. This is no longer a
politically correct term, especially when it relates to how people identify themselves.
The terms that are currently used in its place are lesbian, gay, men who have sex
with men (MSM), bisexual, transgender and questioning (LGBTQ).
Informed consent - according to the Canadian Association of Social W orkers
(2008), informed consent is a “voluntary agreement reached by a capable client
based on information about foreseeable risks and benefits associated with the
agreement” (p. 14). As social workers are bound by a code o f ethics, informed
consent should not be exploitive or harmful to the person giving consent. I.e. a
person under the influence of drugs and alcohol cannot give informed consent.
Meaningful engagement— letting go of biases and expectations and truly having an
open mind while engaging with others. Meaningful engagement is about listening to
what people have to say and valuing their stories without manipulating their words
into your own interpretation for your own purpose. It involves no exploitation.
Numeracy - the ability to work with numbers.
Populations - those persons who identify with specific people, i.e. Aboriginal, drug
users, women, men, youth, etc. HIV affects every population in unique ways.
Poverty: the condition of lacking basic human needs such as food, clothing and
shelter.

xiv

Skype - a software application through Microsoft that allows people to communicate
with people through computers (phone calls, video calls, and instant messaging).
Stigma - a socially constructed phenomenon that is based on devaluing a person
based on distinguishing characteristics set apart from acceptable social standards.

XV

ACRONYMS
For all the various fields across the professional plane, we use acronyms. It can be
frustrating for those who are newly walking into it, but it is the way of life in the social
sciences industry. We cannot get around it. Sometimes I will be explaining something
to someone and then the question is asked. “What does that stand for?” The
challenge is not remembering the acronyms, but remembering what they stand for. I
say this with great humour as I am confident that it has happened to many others
before me.

APN+ - Asia Pacific Network of People Living with HIV/AIDS
APCASO - Asia Pacific Council of AIDS Service Organisations
AIDS - Acquired Immune Deficiency Virus
ASO - AIDS Service Organization
BCCDC - British Columbia Centre for Disease Control
BC-CFE - British Columbia Centre for Excellence in HIV/AIDS
CAS - Canadian AIDS Society
CDC - Centre for Disease Control
CATIE - Canadian AIDS Treatment Information Exchange
CHLN - Canadian HIV/AIDS Legal Network
CASW - Canadian Association of Social Work
CMA - Census Metropolitan Area
CA - Census Agglomerations
CBO - Community Based Organization

CCDIC - Centre for Communicable Diseases and Infection Control
DNA - Deoxyribonucleic acid
GRID - Gay related Immunodeficiency
GIPA - Greater Involvement of People Living with HIV/AIDS
HIV - Human Immunodeficiency Virus
IDU - Intravenous Drug Use/User
KS - Kaposi’s sarcoma
MIPA - Meaningful Involvement of People Living with HIV/AIDS
MSM - Men who have sex with men
NGO - Non Government Organization
OHTN - Ontario HIV Treatment Network
PCP - Pneumocystis carinii pneumonia
PLHA/PLHIV/PHA - Person(s) Living with HIV/AIDS
PHAC - Public Health Agency o f Canada
PLN - Positive Living North
PLNW - Positive Living North West
PHAC - Public Health Agency of Canada
RST - Rural and Small Town
RNA - Ribonucleic acid
UNAIDS - Joint United Nations Programme on HIV/AIDS

ACKNOWLEDGEMENTS
The past year and a half, since my journey towards achieving my Master of Social
Work began, has been full of chaos for me. I have gone through periods of doubt,
periods of vigor, and extensive periods of searching for motivation. My friends and
family have always been there to cheer me on during these times. I need to
acknowledge the people who have made this part of my academic journey possible
for me.
Si (with her whips and chains)
My thesis committee
Shelly
Diane
Halijo
First Friday Group
My Facebook Groupies
Jamie, Jennifer, Shelly & Alana for the great pics when I thought ‘all was lost’
My supportive colleagues at work
Pacific Leaders through the BC Public Service
Positive Living North
Positive Living North West
Blood Ties Four Directions Centre
HIV North
My sister Carrie (“You can do anything you set your mind to and don’t let anyone tell
you different”)

&
Mom & Dad (Thanks for having faith in me)

A special thank you to my son Gabriel and fiance Danton who have been there for
me through the late nights, hysteria and nothingness. I love you both for giving so
much up to support me through this.

INTRODUCTION
“AIDS. Probably the most single most powerful word of our era for evoking
intense individual and societal responses. The reasons for this are often cited: fear,
death, stigmatization, prejudice, discrimination, illness, suffering” (Somerville &
Gilmore, 1992, xi). For thirty years society has not moved past this ideology that puts
more and more people living with HIV/AIDS (PHA’s) at risk of isolation and death.
How can we move forward when the very thought of disclosure is a vital threat to the
well-being of PHA’s globally? I talk about AIDS as though it is an everyday
occurrence in the world. Well it is. More than 33 million people in the world are
infected with HIV and more than 5,400 people die every day from AIDS (World Vision
Canada, 2012).
Today HIV appears to attract more attention than AIDS because it is said that we
have moved to a place where it is seen as a chronic disease and less people are
dying of AIDS due to medications available on the market. Do not let this fool you.
People are still dying of AIDS every day around the world. Many of them still die in
isolation and with shame. If I can change this for one person with the work that I do,
then I will have honoured those who have passed and those who are still fighting the
fight in this politically challenged world that we live in. I write from experience in
working in the HIV/AIDS movement for more than a decade and living with the
disease for 17 years.
People living with HIV in northern communities face different barriers, not only as
positive people, but also in regards to participating in HIV programming in their
communities. In a report by the Ontario HIV Treatment Network (OHTN), one man

xix

from a northern town said “It’s totally different than living in a large city where you
have options, here you only have one option and that’s it. That’s a big barrier for a lot
of people, disclosure” (2007, p. 21).
In exploring this different reality, this document will provide an overview o f HIV in
Canada. It will look at HIV within geographic locations, as well as discuss the social
determinants of health. All o f these things relate to the Greater Involvement of People
living with HIV/AIDS (GIPA) principle and the barriers that communities face during
implementation. By providing a literature review, I will look at the different facets of
implementing GIPA. Throughout the decades of the HIV/AIDS movement, we have
definitely seen a powerful stance taken by people living with HIV around the world.
They continue to be a part o f a vast social movement that is inclusive to medical
breakthroughs, program development and implementation, policy change, and
education and awareness. If only this could be channelled more effectively into the
northern context.
Though my general research topic is HIV/AJDS, I have narrowed it down to
implementing the GIPA principle from the perspective of service providers. In order
to gain a better understanding of how geographical location affects people living with
HIV/AIDS, I decided to focus on northern and rural communities in western Canada.
My research question is: How is GIPA implemented in northern and/or rural Western
Canadian communities in spite o f barriers to services? The title of my research
project is Beyond the Horizon: The Implementation o f the Greater Involvement o f
People Living with HIV/AIDS in Northern and/or Rural Canadian Communities from
the Perspective o f Service Providers.

XX

I would like to quickly make mention of the pictures used in this document.
Originally when I went out and conducted my research it was during July, August and
September. These months are considered the summer season. I had taken many
pictures while travelling to these communities. Unfortunately due to technical
reasons, and my lack of care, I lost all the photos. Naturally this created instant panic
because the pictures provide a reflection of the northern context. Thankfully, I had
friends come forward with pictures of their own that I was

able to use. This is not

ideal, as the storytelling from the photos will not be the same. At the very least, the
reader should get a sense of what is meant by
north. I was also able to find some pictures on
the internet that I used with permission. The
reason why I am bringing this up is that in some
of the pictures there is snow. In the regions
where I conducted my research, there is snow
for approximately 6 to 7 months of the year.

I love pictures and I enjoy taking
them. Pictures tell stories and are
a great Authoethnographical tool.
Sometimes pictures tell the stories
that words cannot. (Capostinsky,
2013).
“Visual data complement textual
data and sometimes supercede
the benefit of textual data because
visual data make long term
impressions on viewers” (Chang,
2008, p. 109).

Hopefully this helps you to understand the
results of my research a little better. It creates different challenges for people living
with HIV/AIDS in north. Sometimes the weather, compounded with geographic
location, can be burdensome.
In chapter one I will introduce you to HIV/AIDS and the history behind it. W hat is
this disease and where did it come from? I will share some alarming statistics about
infected populations and how social work plays a role within addressing the issue of
HIV/AIDS. Who is responsible for doing something about it and what can be done?

Lastly, I will introduce you to the greater involvement of people living with HIV/AIDS
(GIPA). What is GIPA and why is it important? There are so many questions to
ponder. Not one is more important than the other. They all share one thing in
common: an epidemic that is relentless in its path of destruction.

1

CHAPTER ONE
Human Immunodeficiency Virus (HIV)
HIV is the Human Immunodeficiency Virus. Acquired Immune Deficiency
Syndrome (AIDS) is not the same as HIV. Some people develop AIDS from HIV if
their immune system becomes deficient plus they have an opportunistic infection as
listed from the Centre for Disease Control (CDC) in the United States (Stolley &
Glass, 2009). There are many types of opportunistic infections related to HIV/AIDS.
Opportunistic infections are viral, fungal, bacterial and protozoal diseases (Averting
HIV and AIDS, “HIV Opportunistic Infections” , 2013).
In Canada, the equivalent to the CDC would be the Centre for Infectious Disease
Prevention and Control (CIDPC). It is a branch of the Public Health Agency of
Canada that monitors the HIV epidemic in Canada. British Columbia has the BC
Centre for Disease Control (BCCDC), an agency through the Provincial Health
Authority. British Columba is also home to the BC Centre for Excellence in
HIV/AIDS. The Centre for Excellence has been a leading institution for developing,
monitoring and disseminating research and treatment programs for HIV.
For some people it takes years to develop symptoms of HIV as we now have
what is known as antiretroviral therapy to suppress the virus. Today, in 2011, it is no
longer seen as a death sentence to be living with HIV. Is this really the reality for
everyone in all populations? Is it fair or even accurate to make a blanket statement
like this? It sounds great in theory, but it is deceptive. So much has been done over

2

the past 30 years. We have come so far and the last thing we want to do is minimize
the seriousness of the issue.
Though the medical responses to HIV/AIDS have come far over the years,
people need to know that AIDS does still affect many people. Since 1983
approximately 21,000 people in Canada have died while infected with HIV or AIDS
(Public Health Agency of Canada, 2007). Though many people are now living longer
with the virus, so many continue to succumb to AIDS related illnesses because they
lack the social determinants of health.
It is shocking that in such a prosperous country like Canada people continue to
die because of the lack of basic life necessities and access to healthcare.
The truth is that Canada - the ninth richest country in the world - is so
wealthy that it manages to mask the reality of poverty, social exclusion
and discrimination, the erosion of employment quality, its adverse
mental health outcomes, and youth suicides. While one of the world’s
biggest spenders in health care, we have one of the worst records in
providing an effective social safety net (Mikkonen & Raphael, 2010, p.
5).
Generally speaking, AIDS affects people living in poverty and addiction: people with
limited or no access to medications, or those who are unable to stabilize in their
environment to create adherence to medications. In some cases, the body is just not
resilient enough to continue to support the virus. One journal states “there is growing
evidence that a high proportion of the ongoing AIDS mortality in the developed world
is due to poor access to therapy among disadvantaged or marginalized populations”
(Wood et al., 2003, p. 2420). Yet with all the research indicating this, our leaders still
fail to recognize this and act on it.

3

The Beginning
AIDS has a long history around the world. It has transitioned over decades from
the terms 4-H disease (Haitians, homosexuals, hemophiliacs and heroin users) to
GRID (gay-related immunodeficiency) to AID (acquired immunodeficiency disease) to
HIV/AIDS (human immunodeficiency virus/acquired immunodeficiency syndrome). It
has been written that AIDS stems from various types of African monkeys whose
genetically mutated DNA and RNA infected at least 19 people between 1950 and
1972 (Engel, 2006). People were dying all over the world from what is now known as
Pneumocystis carinii pneumonia (PCP) and Kaposi’s sarcoma (KS) (2006). These
are categorized today as opportunistic infections. At the
time it was unknown why people were dying, only years
later when looking back on these cases were they able to

i iQ n O T S n C ©

identify it as early cases of AIDS. According to the Public

E C jU 3 lS

Health Agency of Canada, the first diagnosis of AIDS was

F©3r

in 1981 in the United States, in Canada it was a year later (2007).
What prompted the research and medical world into action was the rampant
infection rate among gay populations in San Francisco and New York in the 1980’s,
as well as the pure panic from American citizens who were afraid they could get it
from holding hands, sharing glasses, swimming pools, busses and restaurants
(Engel, 2006, pp. 25-30). There was so much stigmatization towards infected
populations at this time. Risk groups and target populations were identified as high
risk of contracting the disease. These groups became known as the “Four-H Club”:
homosexuals, Haitians, heroin addicts and hemophiliacs. It was further portrayed

that people ‘outside’ of these groups were safe; yet, people still lived in fear.
However, this left out recipients of blood transfusions and babies born in utero
(Grmek, 1990). When I think of this disease in the world as it is today, one would
think that given time people would come to understand the disease and that the
stigma and discrimination would lessen. One would think that people would be more
educated in light of all the worlds’ medical advances. Sadly this is not the case.
People fear what they do not know.
Statistics
There are many statistics available on the World Wide Web. It is important that
when looking for statistics to go to sources that have accurate information; hence, for
this paper, I will often refer to the Public Health Agency o f Canada (PHAC). The
following statistics were released in 2008. There have been no updates released at
this time.
According to PHAC, “approximately 65,000 Canadians were estimated to be
living with HIV infection at the end of 2008” (2010, p. 6). Men who have sex with men
(MSM) continue to be the highest risk of transmission for HIV and account for 44% of
new infections (2010). Women account for about 22% of the national total and
represent 26% of new infections nationwide (2010).
“Aboriginal people continue to be over-represented in the HIV epidemic in
Canada and represent about 8.0% of all prevalent HIV infections” (PHAC, 2010, pg.
5); however, they only represent 3.8% of the entire Canadian population (2010).
Therefore, the “overall new infection rate among Aboriginal people is about 3.6 times
higher than among non-Aboriginal people” (2010, pg. 6).

5

Many of the northern communities in BC and Alberta comprise of Aboriginal
populations. This is important to remember when looking at the barriers to Greater
Involvement of People Living with HIV/AIDS. Culture and geographic location
contribute to its implementation within the Aboriginal population. As for people who
are living with HIV in Canada and are from countries where HIV is endemic, they
represent 14% of the HIV infected population
(PHAC, 2010).
HIV and Social Work
What is social work? Social work is about
working with people, communities and
systems to create social justice and provide
caring and supportive environments. I also
refer to it as social work caring. When I
decided to enter the field of social work it was

A very heartwarming experience I
had last week was when I was car
shopping online and came across a
prospective vehicle. A member was
in the drop-in centre and knowing
he has an abundance o f knowledge
with regards to buying and selling
vehicles, I asked his opinion. He
was thrilled and we spent the next
hour sitting together on the
computer car shopping and him
telling me all the tricks and the
trades of buying vehicles. It was
informative, fun and a bonding
moment (relationship building).
Focus group participant, 2012

because I had the passion and commitment to
help others. During my educational journey I came to understand that most of the
other people in the field shared the same values. Together we learned about
addiction, mental health, poverty, government, disabilities, violence, abuse, trauma,
inequality and all the things that create marginalization and facilitate oppression. I
began to understand how difficult it was for many people to exist in a world of
patriarchy, deficient policies, racism, stigma, fear, mainstream culture and class
segregation. I had experienced many of these earlier in my life during a time when I
was trying to “find m yself, but I never understood it quite as clearly as when I was on

6

my educational journey. Social work caring should not be discriminative or
egocentric.
Earlier on in my educational journey, I took my experiential knowledge and used
it to help others at street level in my community. I had lived through the devastation
of addiction, violence, homelessness and
In a national study conducted in
2003, tolerance toward people living
with HIV was assessed.
The results of the survey show that
stigma and discrimination continue
to affect people with and at risk for
HIV.
• 18% of Canadians felt that people
who have HIV/AIDS should not be
allowed to serve the public in
positions like hairstylists.
• 44% of Canadians felt that people
who have HIV/AIDS should not be
allowed to serve the public in
positions like dentists and cooks.
• 11% of Canadians felt that people
who got HIV/AIDS through sex or
drug use got what they deserve.
• 8% of Canadians felt that they
could not be friends with someone
who has HIV/AIDS.
• Six scenarios were used to create
a "comfort scale”; one in 4
Canadians demonstrated a low level
of comfort with HIV/AIDS, 41%
demonstrated a moderate level of
comfort and 35% had a high level of
comfort.

disease. It was this journey that gave me the
insight to help others still trailblazing down that
path. Provincially and nationally I provided a
voice for those who were not being heard. My
passion and commitment was evident and I
immensely enjoyed all the work that I was
involved in. Then a light went off in my head
and I thought to myself that I could be doing so
much more if I worked within a system that
‘maybe I could change at a larger level’. So I
decide to work for the provincial government. I
did this because, for me, social work is about
challenging myself as a professional. It is about

(Canadian HIV/AIDS Treatment pushing the boundaries and learning all that I
Information Exchange, 2010, p. 22)
can; four years later I am heartsick and
completely burnt out. Did I create change? The answer is both yes and no. I like to
think that I did create some change at the micro level; however, the government is a
system that is well protected both inside and out. Sometimes even immune to

7

change. Do not get me wrong, there are many good things that happen within
government systems; however, there are also many people that fall through the
cracks and do not get the help and/or services that they need. Social work caring is
the ability to keep learning and accept that change comes in all sizes.
One thing that I have learned is that there is no one-size-fits-all solution. Every
individual in this world is unique: every person, fam ily and child. They all require
individual assessments and planning suitable to them and their needs. Planning and
assessments that they should be directly involved in. It frustrates me to realize that
not everyone thinks this way. Social work caring is about resilience.
We all come from a place of learning. We all seek or have mentors in our life to
help us navigate through the policies and politics o f different issues that are
meaningful to us. For me it was important to stay focused and not allow the taint
from others to shape my understanding and practice. W e are all accountable for our
own lives and how we decide to use the education we acquire.
The experiential voice is a powerful voice. When I say experiential I mean
people who ‘learn through experience’. Though the complete list is exhaustive, some
examples include: the people with addictions, the survival sex workers and sexually
exploited youth, the women who have suffered from violence, the people living with
HIV/AIDS, the young and old who are disabled. They have more than book
knowledge and they deserve to be valued and respected for their courage to come
forward. Though everyone’s personal experience is different, there are various
consistencies throughout. Social work caring is about learning from those who are
grounded in the issues that we are fighting to transform.

8

Power is something that is consistently sought and often misused. When people
are given a little, it is a natural feeling to want more. However, when it gets to the
point that one is working towards their own agenda and not in collaboration with
others, then it becomes a problem. I see it as a cancer within the helping profession.
It strengthens those on top of the hierarchy and seeks to diminish the voices of those
working frontline and the populations they work
with. Social work caring is about recognizing
power imbalances and honoring the populations
you work with.
Social work has been a part of HIV/AIDS
from the beginning. Hoe (1998) states “for the
social worker, there is a vital need for
development of knowledge and action regarding
the psychosocial, economic, and the political
issues that frame how we think and respond” (p.
xi). HIV/AIDS is very much a social issue;
therefore, it is clear to see how it could become

I accompanied a PHA to his first
HIV/AIDS conference. It was a
CAAN conference in Toronto. He
was really not feeling well and was
experiencing massive bloating
(water retention). He was so selfconscious of his looks. Once the
conference started, he went one
way and I another. Every time we
would meet up he was more
excited than the last—filling me in
on this and that. When he met
other PHA’s during smoke breaks
they shared lots between them,
talking about medications, etc. /
could see how empowered he
was. He never spoke again at the
conference on his appearance. He
forgot all about it because he was
so involved in the conference. He
also let go of any homophobia he
had and embraced gay culture. He
then went on to join the board of
CAAN representing the Yukon as
a PHA. He is still involved in this
type of work.

a part of social work in the larger context. HIV is
Focus group participant, 2012

not only caused by a virus. It is caused by
many things such as poverty, discrimination, fear, power imbalances, addictions, and
social attitudes (Canadian Association of Social Work, 1997). Social workers
advocate for the needs of PHA’s; they strive to change economic hardships for a
better standard of living (Midgley, 1996); and, they fight governments that implement

9

the policies that continue to oppress the HIV population. Social work is about
standing up for others in many different settings and in many different ways.
When we look at changing the way HIV/AIDS affects the quality of life of PHA’s it
is more tangible to look at the medical context rather than the social context.
However, for the most part, it is the role of the social worker to understand and break
down the social barriers that prevent PHA’s from
attaining basic needs for survival. As social
workers, we work in community, government,
health and political arenas.

We all work to

achieve the same things, but the way we go
about achieving them may look different. For
example, counselling provides individual comfort
for those living with and affected by HIV/AIDS,
while addressing the legislature can create policy
change at the national level. No matter how we
decide to use our skills and talents as social
workers, we can create change and provide
supports on many different levels. Social work

The highlight of my job is getting to
know the members. They are all
unique and special in their own
ways. They have a lot to teach
others and they really appreciate
having us to talk to. I went to a
doctor's appointment with one
member and when she was talking
to the doctor she had said that when
she is out on the street, walking
home or wherever she is going that
nobody acknowledges her. The only
time people talk to her is when she
has money. They don't talk to her
(just behind her back that she is
crazy) because she is always
"talking to herself when she is
praying out loud. When she comes
to Positive Living North she feels
welcome. People talk to her and hug
her. She is human. This makes her
feel special and in turn makes me
feel special.
Focus group participant, 2012

caring is about advocacy.
When we talk about social work and caring we cannot forget to talk about selfcare. It is very important for social workers to take care of themselves so that they
can work effectively with others. “The energized, motivated social worker will provide
better services to clients than the emotionally drained practitioner” (Walsh, 2009, p.

10

76). In my experience, burn-out comes from large caseloads, vicarious trauma, long
hours, and limited resources. The helping profession is not a profession in which one
gets much acknowledgement in the work that they do, nor do they get rich doing it.
Helping others is something that comes from within people. It is about wanting to
make the world a better place for even just one person, or one issue. Social work
caring is about passion and dedication.

Greater Involvement of People Living with HIV (GIPA)
Social leadership from many different countries came together 19 years ago to
shape what came to be known as Greater Involvement o f People living with
HIV/AIDS (GIPA). What is GIPA? The GIPA principle, was declared at the Paris
Declaration in 1994. GIPA is a set of principles adopted by the United Nations in
1999 that aims to increase the involvement of people living with HIV in making
decisions that affect their lives (Joint United Nations Programme on HIV/AIDS, 2007).
The principles include:
• To support the greater involvement of People Living W ith HIV and
AIDS (PLWHA) through initiatives to strengthen the capacity and
coordination of networks of PLWHA and Community Based
Organizations (CBOs) stimulating the creation of a supportive political,
legal and social environment;
• To involve PLWHA fully in decision making, formulation and
implementation of public policies;
• To protect and promote the rights of individuals, in particular those
living with or most vulnerable to HIV/AIDS, through legal and social
environments;
• To make available necessary resources to better combat the
pandemic including adequate support for PLWHA, NGOs and CBOs
working with vulnerable and marginalized populations;
• To strengthen national and international mechanisms connected to
human rights and ethics related to HIV/AIDS;
• To protect and promote human rights in our work; and,

11

• To apply public health principles within our work,
(Canadian AIDS Society, 2009, Mod 1, pp. 1-2).
One of our HIV positive
members, who hadnt used drugs

According to a toolkit developed by Asia-Pacific

l7 Z
^ ’a Z ^ p s e ’
N e tw o *
° f P e ° P ' e L i u i n 9 » i t h H I V / A I D S <A P N + >
I had only known him sober and
witnessing his fear and
and Asia-Pacific Council of AIDS Service
vulnerability when he came for
harm reduction supplies (on the
Organisations (APCASO), GIPA aims “to make the
verge of withdrawing), was
challenging. After a week with no fight against HIV/AIDS a priority; to protect and
word from him, he showed up at
the agency sober and asked
promote the rights of individuals; to make available
when he could start volunteering
again. He spent the little money
the necessary resources; and, to work in a spirit of
he had that day to buy us our
7
r
favourite coffees to show his
.
..
_
. . . . „
„ . ,
gratitude. We sat there together
true Partnership with PLWHA as well as affected
understanding and appreciating
each other.
communities” (2005, p. 9). The GIPA principle is
Focus group participant, 2012

not something that organizations need to adhere to

in order to receive funding; however, in Canada if an organization wants to be
endorsed by the Canadian AIDS Society (refer to page 4), then they must adhere and
prove adherence to the GIPA principle. It is all about accountability. This is a way to
facilitate the process of implementing GIPA within organizations nation-wide, as well
as supporting organizations to see the benefits of this inclusion. Endorsement from
organizations at the national level can be a benefit for local community organizations.
In recent years, due to government priorities, it has been challenging for local
organizations to struggle to keep their doors open. Benefits from national
endorsement include the inclusion of local issues at the national level, access to upto-date educational materials, fundraising support, and advocacy and policy change
at the national level. If I could sum GIPA up into a simple sentence, it would be that

12

GIPA is a way to create life changing circumstances and outcomes in society through
the meaningful engagement of PHA’s.
GIPA and the Northern Context
Definitions
What is meant by the northern and rural context? For the purpose of this discussion
northern alludes to geographical location, whereas rural emphasizes population
statistics. There are many definitions for both northern and rural; however, not one
has been universally adopted (Pong, DesMeules, Heng and Lagace, 2011).
Traditionally, rural was defined as having populations under 2,500 people (Ginsberg,
2005). The definitions from Statistics Canada include “rural and small town (RST)”
(du Plessis, Beshiri, Bollman, and Clemenson, 2002 and Pong et al., 2011). RST
refers to populations living outside the commuting zones of larger urban centres,
specifically outside census metropolitan areas (CMA) which consist of 100,000 or
more people in the urban core, and census agglomerations (CA) which consist of
10,000 to 99,999 people in the urban core.
Statistics Canada recently changed the
term urban to population centre. According
to Statistics Canada there are small
population centres (1,000 - 29,999),
medium population centres (30,000 99,999) and large population centres
(100,000 +) (2011). Population centres are based on concentrations of high density
and rural areas are based on a dispersion

Looking down on Whitehorse, Yukon
from Grey Mountain. Picture courtesy
of Jen Sugden, 2013

of low density (Puderer, 2009). According to du Plessis et al., (2002, p. 1), a
benchmark when defining rural would be “the population living in towns and
municipalities outside the commuting zone of larger urban centres (i.e. outside the
commuting zone of centres with population of 10,000 or more)”. However, there are
so many other factors to consider when describing population centres and rural
areas. Such factors include the needs and experiences of people in communities
(Puderer, 2009) as well as social policy issues and economic development
(Ginsberg, 2005).
The definition of what constitutes for northern Canadian communities has proven
to be just as complicated, influenced by both geography and politics. There is not
one universally accepted definition due to the fact that people will define it in terms of
their knowledge, experiences and specific purposes. Bone (1992) defines north as
two regions, the arctic and the sub-arctic. This leaves out a vast area of what others
have constituted as north, including factors such as “climatic and physical attributes,
economic structure and population settlement patterns between the territories and
the northern parts of Labrador, Quebec, Ontario, Manitoba, Saskatchewan, Alberta
and British Columbia” (McNiven & Puderer, 2000, p. 1). Other researchers defined
north as 60 degrees north referring to the Yukon, North W est Territories and
Nunavut. McNiven and Purderer (2000) delineated the term north by using a method
known as the north-south line or threshold (as shown on the map below). The northsouth line delineation is very complex and “reflects the combined social, biotic,
economic and climatic aspects of all the lines” (2000, p. 10). According to Vincent
and Fick (2000),

14

geographers Chuck McNiven and Henry Puderer of Statistics Canada
defined "northness" using 16 characteristics, such as how often you have
to flick on the furnace; the limits of permafrost, boreal forest, railways and
all-season roads; number of agricultural growing days; climate; and
accessibility to urban centres.

North-South Line and Transition Lines
(Comparison of Unsmoothed and Smoothed Lines)

—
■

Smoothed Mean end +/- 1 standard deviation lines
Unsmoothed Mean and * f - 1 standard deviation tines
Census Metropolitan Areas

North-South Line Delineation (McNiven & Purderer, 2000)

In my experience in living in northern British Columbia and interacting with
people from communities across Canada, people define their environments in terms
of their experiences. Sometimes they will define their communities as both urban
and rural (as noted in chapter four). In the ‘real’ world, northern definitions depend
on transportation, geographic location, weather conditions, isolation (geographically
and socially), population, social and health services, industries, consumerism and
more. One can live in a dispersed population of 80,000 people, but not have access

15

to city transit because they live outside city limits or poor transit schedules within the
city limits. One may live in a community of 15,000 people with no transit services at
all. One may live in a small community of 6,000 people, but there are no services and
few stores due to it being an oil industry town where people periodically commute
from the rigs to the cities that are several hours away. One may live in a small city
with a population of 30,000 people, but there are few doctors and healthcare services
which cause them to drive two hours (or in
many cases, longer) to the next city to get
services (even this scenario depends on
transportation and social isolation). When
referring to north (in the map above) Prince
George is located within the southern
transition zone, far from the northern
transition zone, and even farther from what

Yukon River from downtown
Whitehorse, Yukon. Picture courtesy of
Jen Sugden, 2013.

is known on the map as a tangible term of ‘north’. Yet we are known as the Northern
Capital of British Columbia? This is a clear example of fragmented ideology o f how
the north is defined and by who defines it.
The Challenges of HIV in the Rural and Northern Context
I think that there are definitely more repercussions with GIPA when you enter
smaller rural communities in the North. It is unknown exactly how many people living
with HIV/AIDS (PHA’s) live in rural communities across Canada (Veinot, Harris, Bella
& Challacombe, 2011), but one thing for sure is those PHA’s who do live in the north
face greater health challenges.

According to the Canadian AIDS Treatment and

16

Information Exchange (CATIE), “If the percentage of PHAs in rural areas is similar to
the percentage of PHAs in the country as a whole (20%), then approximately 13,000
PHAs live in rural Canada” (Veinot et al., par. 3, 2011). However, it is also cautioned
that this could be an over-representation because many PHA’s move to urban cities
where there are more services and supports (2011). Unlike urban cities where there
are a lot of services available for marginalized populations, in northern communities
there may be little or no services. Often there may be a lack of experienced doctors,
peer support and AIDS service organizations (Olivier, 1998). Often PHA’s must
travel to larger cities to see specialists and order medications. Sometimes they may
have no transportation to do this; therefore, they are not receiving services pertinent
to good health promotion.
Imagine that, as a PHA, you move back to your community of 1,500 people.
There is no AIDS service organization and the nursing program only runs one day a
week. There is one doctor in town that has no knowledge around HIV/AIDS. There
are no programs or services that would support you in town (whether this is
perceived or actual). As far as you know, you may be the only one living with HIV in
your community. This creates extreme isolation (Olivier, 1998) considering that many
PHA’s get a sense of belonging through peer support from other PHA’s. In regards
to GIPA, how does one come forward and participate in something meaningful to
them when there is nothing to participate in? Yes, if more people were aware of
HIV/AIDS and the possibility that their community is affected by it, there may be more
supports to help PHA’s. However, at this point, in this situation, there is not. Nobody

17

knows but the PHA. Now let us look at the concrete barriers for PHA’s in the
northern context.
Northern communities may be geographically isolated. This creates limited
access to healthcare and other services for PHA’s. Many people in Northern
communities may feel like HIV/AIDS is not an issue (Olivier, 1998) because it does
not affect them. They are isolated and there may be a lack of education and
awareness of HIV/AIDS. “Misinformation in rural communities tends to fall into three
categories: (1) information that challenges the local existence of HIV; (2) mistaken
notions about how HIV is transmitted; and (3) unsubstantiated claims about treatment
and cures” (Veinot, Harris, Bella & Challacombe, 2011, p. 3). The lack of
professional support services impedes personal growth for PHA’s. Limited or no
transportation further isolates them. Instead they may feel at a loss for where or
whom to go to for help. This would in turn foster the shame, guilt and
embarrassment of living with HIV. This causes extreme isolation for people, who in
these circumstances, are living with HIV/AIDS.
Other barriers for PHA’s in northern communities include the fear of rejection or
being ostracized from their communities and personal supports. This can happen
within any population in smaller northern communities. For the past decade I have
heard stories, over and over, about how people living with HIV were forced from their
communities and forever shunned from all they knew. It makes it challenging
because it silences PHA’s. Silence means the perpetuation of ignorance in our
northern communities. Without knowledge, we cannot prevent the spread of this
disease.

18

Moving Forward
Are we moving forward? The Canadian government, through the Federal
Initiative to Address HIV/AIDS in Canada identified eight key populations to develop
discrete approaches to address HIV/AIDS. These populations included: people living
with HIV/AIDS, gay men, people who inject drugs, Aboriginal peoples, prison
inmates, youth at risk, women, and people from countries where HIV is endemic.
According to the Public Health Agency of Canada, “the Federal Initiative provides
funding for prevention and support programs reaching key priority populations, as
well as research, surveillance, public awareness, and evaluation (The federal
Initiative to Address HIV/AIDS, 2012). W hat it fails to mention is the fact that the
federal government severely cut the budget to the initiative. This means that many
HIV/AIDS programs across Canada have been permanently closed, while others
struggle to provide services because they are underfunded.
Over the years, the face of HIV/AIDS has changed. There is a relatively constant
flow of new medications, treatments and supports for people living with HIV/AIDS
(PHA’s). Social workers have been a part of systemic change over the years, but
there is still much more to accomplish for those who are still living with the disease.
Due to the global pandemic of HIV/AIDS, policies have been drafted to support
PHA’s.
GIPA, a principle that supports the involvement of PHA’s at all levels of
participation, has helped to support PHA’s and strengthen their voices within a world
that continues to marginalize and oppress them. The way that GIPA is implemented
is instrumental to the success of PHA’s and their involvement across the globe.

19

However, in light of this principle that has shown success and unifies a population
that faces many difficulties, there are still many barriers that communities,
organizations and programmes face in order to maximize the GIPA principle. These
barriers appear to be different for northern communities and include, geographic and
personal isolation, lack of services for PHA’s, limited access to healthcare,
disproportionate transmission rates, and cultural obstacles.
In order to get a better understanding of best practice around GIPA, much more
research needs to be done with groups who have implemented the GIPA principle.
In the meantime, the HIV/AIDS movement will continue to move forward in supporting
changes around supports, healthcare, social and policy change, and law reform to
improve the lives of those living with and affected by HIV/AIDS.
The following chapter will provide a literature review around GIPA that includes
implementation, benefits and challenges. The social determinants of health enable
us to measure what populations are at risk of HIV/AIDS. It also shows the
importance that the role of social determinants plays in the lives of PHA’s. Therefore,
chapter two provides us with an overview of the social determinants of health. Note
the challenges of GIPA implementation when the social determinants are lacking in
people’s lives.

20

CHAPTER TWO

GIPA Literature Review
Since the inception of the Greater Involvement of People Living with HIV/AIDS
(GIPA) in 1994, there have been several publications written to teach people how to
implement GIPA within their communities, organizations, projects and programmes.
Some of this literature includes The Good Practice Guide: Greater Involvement o f
People Living with HIV (GIPA), One Foot Forward: A GIPA Training Toolkit, and
“Valued Voices" GIPA Toolkit: A manual for the Greater Involvement o f People Living
with HIV/AIDS. From a global perspective, HIV/AIDS is a crisis with no bounds.
There is a definite need for meaningful involvement from people living with HIV/AIDS
(PHA’s); however, there is little or no commitment from authorities and organizations
to ensure this happens.
Implementing GIPA
There are many ways that GIPA can be implemented. Given that there are so
many ways to involve PHA’s in meaningful HIV work, choosing a project and/or
organization should take careful consideration. Some of the things to look at when
assessing one’s involvement in an organization are:
a) Do they offer and support the social involvement of PHA’s and how
they do this?
b) Do they involve PHA’s fully in decision making and implementation?
c) Do they protect and promote the rights of individuals through legal
and social environments?
d) Do they make available necessary resources to combat the
pandemic?
e) Do they strengthen national and international mechanism connected
to human rights and ethics for PHA’s?
f) Do they protect human rights within their work?

21

g) Do they apply public health principles within their work?
(Canadian AIDS Society, 2009, Module 2)

The GIPA pyramid below explains how PHA’s can be involved at every level of an
organization.
DECISION MAKERS: PWHAs participate
in decision-making or policy-making
bodies, and their inputs are valued equally
w ith all the other members of these bodies.
EXPERTS: PWHAs are recognized as important
sources of information, knowledge and skills who
participate - on the same level as professionals in design, adaptation and evaluation of interventions.

u

E

I
o

IMPLEMEMTERS: PWHAs carryout real but instrumental
roles in interventions, e g . as carers, peer educators
or outreach workers. However, PWHAs do not design
the intervention or have little say in how it is run.
SPEAKERS: PWHAs are used as spokespersons in campaigns to
change behaviours, or are brought into conferences or meetings to
"share their views” but otherwise do not participate.
(This is often perceived as "token" participation, where
the organizers are conscious o f the need to be seen as involving
PWHAs, but do not give them any real power or responsibility.)
CONTRIBUTORS: activities involve PWHAs only m arginally generally
when the PWHA is already well-known.
For example, using an HIV-positive pop star on a poster,
or having relatives o f someone who has recently died or AIDS speak
about that person a t public occasions.
TARGET AUDIENCES: activities are aimed a t or conducted for PWHAs.
or address them en masse rather than as individuals.
However, PWHAs should be recognized as more than
(a) anonymous images on leaflets, posters, or in information,
education and communication (IEC)
campaigns, (b) people who only receive services, or
(c) as "patients" at this level. They can provide important feedback
which in turn can influence or inform the sources or the information.

(Joint United Nations Programme on HIVAIDS, 1999, p. 3)

Something else to consider is that not everyone is comfortable with disclosing
their serostatus. Disclosure is not always necessary. PHA’s should be able to openly
disclose their serostatus; however, they also have a right to be involved in community
without disclosing their serostatus (Satpathy, 2003). One of the most important
things to realize is that disclosure cannot be undone. There can be serious

22

consequences to disclosure. Mawar, Sahay, Pandit & Mahajan (2005) state the
disclosure of one’s serostatus cause social supports to mitigate negative effects of
stress such as “perceived discrimination, disgrace, disharmony, concern about
insurance and employment, a desire to protect oneself and others emotionally and
from violence” (p. 476). No matter how GIPA is implemented, ongoing supports are
needed for PHA’s to ensure a healthy engagement
When I straightened out my life I
reached a point where I wanted to
stand up and stand out: be a role
model for others. I basically ‘outed’
myself through provincial and local
media (radio, print and television),
events, and networking opportunities.
Years later when I was ready to
settle down and start the next journey
in my life, my past kept coming back
to haunt me. I struggled with dating
and worried that my son would be at
risk in the school system (bullying).
When I started my career, I feared
stigma and discrimination from my
colleagues. I was all over the internet
and it seemed like so often people
would come up to me and say “hey, /
know you. I’ve heard you speak
before." I remember periods of time
when I went through bouts of
depression and mourning. I just
wanted my anonymity back.
Christal Capostinsky

process.
Benefits of GIPA
The framework of GIPA has lasting benefits
for those who have worked endlessly to promote
GIPA beyond the tokenism standpoint. PHA’s are
the experts in their own lives and have much to
offer the communities around them (Asia-Pacific
Network of People Living with HIV/AIDS (APN+) &
Asia-Pacific Council of AIDS Service Organisations
(APCASO), 2005). Being a part of community and
being involved in meaningful work gives individuals
a sense of value and belonging. According to the

Encyclopaedia of AIDS, “there is nothing better than direct experience, which can be
considered a kind of expertise if accompanied by the skill to communicate w ell”
(Satpathy, 2003, p. 291).
Not only are there subjective benefits to GIPA, but communities, regions and
nations as a whole can benefit. Some of the benefits include: making services more

23

relevant and personalized; interventions become more credible and compelling; PHA
perspectives create advocacy for human rights; bolsters the self-confidence and
physical health of PHA’s; and, fosters a decrease in stigma (APN+ & APCASO,
2005). The International HIV/AIDS Alliance and Global Network of People Living with
HIV take it one step further to declare that it
enhances the effectiveness of policies, programs

“GIPA is one of those things
,hg, a w fe n ( princ;pte_

and services because they become grounded in the

brilliant philosophy, but does
not operationalize very well in

lived experience, a most powerful tool (McClelland

sma"
n° ‘1hem
communities and remote

& De Pauw, 2010). Who better to perform the tasks

communities where HIV has a
much stigmatizing meaning as

around creation, implementation and evaluation of

once diclin the 1980>s in
larger centres”.

programs and services than those who have the
knowledge from lived experience? This is not to

Focus group participant, 2012
_______________________

say that it cannot be carried out by non-PHA’s; however, it becomes more meaningful
and effective when there is input from PHA’s. Though everyone’s personal stories
differ, they all share similar obstacles as PHA’s.
Challenges of GIPA
So now that I have explained the mechanics around the implementation and
benefits of GIPA, we can peruse the challenges of this multifaceted concept. I will
not attempt to explain all of the challenges. I will, however, look closely at a few of
them. I will explain many of the challenges in further detail in chapter three. The first
challenge is anonymity. It can be difficult to publicly disclose one’s serostatus
(Satpathy, 2003, p. 294). The more people that know about someone’s HIV status,
makes that person vulnerable and lose a sense of personal control (APN+ &

24

APCASO, 2005). Depending on one’s cultural and ethnic background, being open
about your serostatus can be difficult (Joint United Nations Programme on HIV/AIDS
(UNAIDS), 1999). Sometimes precautions need to be made to protect people from
discrimination that can be socially or physically violent (UNAIDS, 1999). People can
be cruel, especially when they respond out of fear. A famous quote by Honor De
Balzac states “Cruelty and fear shake hands together" (ThinkExist..com, 2013). From
this one can assume that we, as humans, react hurtfully towards others out of fear
brought on by our own ignorance.
The second challenge is getting organizations to participate in recruiting the
involvement of PHA’s. This may be because of prejudice, discrimination, or the lack
of education around the effectiveness of GIPA or the ability o f PHA’s (UNAIDS,
1999). Oftentimes, GIPA can be misused in organizations and PHA’s become
tokenistic. Patterson states, “GIPA is not the tokenism that occurs when programs
and organizations allow people living with HIV/AIDS (PLHAs) to participate marginally
as speakers or symbols” (Patterson, 2005, p. 31). To me, tokenism is akin to a
symbolic gesture. Something with little meaning or value to what an individual is able
to bring to “the table” so to speak. The confounding dilemma behind this is that often
organizations, or the leadership within organizations, are not even aware that they
are facilitating this. Hence, there becomes a lack of education, collaboration
(Satpathy, 2003) and awareness among people working with PHA’s. It is very
important to be aware, at all times, how your words and/or actions are impacting
those around you. The International Community of Women Living with HIV/AIDS
states “while the GIPA principle is widely accepted in theory, our experience is that

25

the views and voices of HIV positive people still tend to be overlooked or ignored”
(The International Community of Women Living with HIV/AIDS, 2008, p. 67).
A third challenge is finding people with the skills needed to participate in effective
ways using GIPA (Satpathy, 2003). Since the inception of GIPA, there have been
many training toolkits created for organizations to teach PHA’s and the people
supervising GIPA how to engage in effective GIPA strategies. PHA’s should
ultimately focus on their areas of skills and if skill development is a part of this, then
PHA’s need to be supported in doing this. GIPA can be empowering for the people
involved, but it can also create burnout due to stress and pressures of being involved
in something that is so close to a person’s heart (Joint United Nations Programme on
HIV/AIDS (UNAIDS), 1999). This correlates with the absence of sufficient
environments for PHA’s within the organization (Satpathy, 2003).
The fourth challenge noted in literature was policy constraints within
organizations (UNAIDS, 1999). Organizations may have inadequate employment
policies that address the healthcare needs of PHA’s (this would include travel
restrictions and the lack of healthcare insurance) (APN+ & APCASO, 2005). The fact
remains that there is no standardized employment policy for PHA’s. It is left up to the
employer to make decisions that constitute the moral and ethical obligations of the
organization towards the people employed therein. This creates a huge barrier for
those who already face stigma and discrimination on a larger scale.
What do many of these challenges have in common? They pertain to
organizational capacity and sustainability (Satpathy, 2003) rather than the subjective
challenges that PHA’s may face on a more individual and personal level. De Goei

26

and Groverman, conclude that “stigma and discrimination, funding constraints, low
skill levels of PLHIV, belonging to a minority or marginalised group, poverty, lack of
understanding and clarity on what GIPA is, gender inequalities in access to education
and services and lack of workplace policies” (2009, p. 4) are all barriers which were
found in an exploratory study on the opportunities to improve the incorporation of the
GIPA principle.
The background provided by this brief examination of these three toolkits
illustrates how groups and organizations could implement the Greater Involvement of
People living with HIV/AIDS. Later on I will look at three different global studies
regarding the outcomes of GIPA implementation. I do this as a way to strengthen my
research findings in and to compare the similarities and differences found. I anticipate
many similarities because across the globe there are so many paralleled issues that
PHA's face on an ongoing basis. W hat I will be looking for are the differences, if any,
in regards to geographical location and environments.
Social Determinants of Health
The terms social determinants of health and key determinants of health are used
interchangeably in the human sciences. For the purpose of this document, I will use
the term social determinants of health. According to a backgrounder provided by the
World Health Organization (WHO),
The social determinants of health are the circumstances in which
people are born, grow up, live, work and age, and the systems put in
place to deal with illness. These circumstances are in turn shaped by a
wider set of forces: economics, social policies, and politics (2008).
People living with HIV/AIDS (PHA's) come from all walks of life. They have been
raised in lower, middle and upper class families.

As mentioned earlier in this

27

document, HIV/AIDS does not discriminate. Therefore, when service providers are
delivering services for PHA's they see people from all walks of life walking through
their doors. Each individual is uniquely affected by the various social determinants of
health.
Income and Social Status
Income influences a person’s status in society. It influences which
neighbourhoods we will live in; determines our social status; impacts our ability to
seek higher education; affects our access to health services; and, ultimately sways
our ‘privilege’ in society. The healthiest populations are those in societies which are
prosperous and have an equitable distribution of wealth (Public Health Agency of
Canada (PHAC), 2003). Poverty is an ongoing issue for people living with and at risk
for HIV in Canada. Not only does it cause Canadians to be vulnerable to HIV, for
those who live with it they are at risk of having their disease progress quickly as a
result of having a lower quality o f life (Canadian AIDS Society, HIV and Poverty
Information Sheet Series, 2004). This is complicated because depending on the
population that a PHA identifies with (specifically IDU, prison, and minority) it can be
challenging to gain employment due to lack of education and/or work experience.
Sometimes it may be that their personal issues get in the way of accessing a good
quality of life.
Social Support Networks
What is a social support network? The word social is intertwined with the world
around us in context with other human beings. When we describe social support
networks, we can look at them as supports around an individual that has meaning for

28

them. We, as humans, need to be grounded in social phenomena. It is a part of our
survival. Depending on where one is geographically, it will affect how social supports
play into their life. For example, if someone lives in a rural community and is fairly
isolated besides having a few friends and family, they will most likely rely on those
people for their social needs. When it comes to being diagnosed with HIV/AIDS,
there is much stigma and discrimination attached to it that it becomes common for
people to isolate themselves, even from friends and family. Ultimately, this affects
ones’ emotional, spiritual, physical and mental needs. According to the Public Health
Agency of Canada, “The caring and respect that occurs in social relationships, and
the resulting sense of satisfaction and well-being, seem to act as a buffer against
health problems” (Public Health Agency o f Canada, Key Determinant 2, par. 1, 2003).
This makes it more important for PHA’s to have a solid social network.
Education and Literacy
Education provides opportunities for people. It is a predictor for social class,
privilege and influence. When we are provided an education it lends to other
determinants of health such as income, social status, personal health, and
employment.
Education contributes to health and prosperity by equipping people with
knowledge and skills for problem solving, and helps provide a sense of control and
mastery over life circumstances. It increases opportunities for job and income
security, and job satisfaction. Education improves people's ability to access and
understand information to help keep them healthy (Public Health Agency of Canada,
Key Determinant 3, par. 1, 2003).

29

Without an education, our options are limited. People with a higher education
tend to be healthier, are more able to enact changes in the Canadian employment
market, and, are more understanding of how to promote their health (Mikkonen &
Raphael, 2010). Education gives us a purpose. It allows people to have a choice in
their own destiny. It generates creativity, passion and knowledge. Knowledge is
power and power gives us a sense of control in our lives.
The majority of people living on the margins of our society do not have the
opportunity for post-secondary education. W hy is this? There are many reasons.
Most of these reasons are beyond their control. You may disagree with me, but I
speak from years of working with these populations and I have constantly seen the
same outcomes year after year.
There are families who live in poverty and suffer from drug and alcohol abuse.
The children in these families often grow up without the skills they need to be
productive citizens in society. They, themselves, revert to addictions, crime and
other harmful risky behaviours. I understand that this happens in other social classes
as well; however, the way that it is managed looks different.
Employment/Working Conditions
Unemployment, underemployment, stressful or unsafe work are associated with
poorer health (Public Health Agency of Canada, Key Determinant 4, par. 1, 2003).
People living with HIV/AIDS are much more likely to be unemployed than people in
the general population (Canadian HIV/AIDS Legal Network (CHLN), 2005). HIV was
formerly seen as a chronic illness. Since medications have been used to treat the
disease, it is now seen as an episodic illness.

30

Some of the reasons why it is difficult for PHA’s to gain and maintain employment
are due to variations in disability and health status, health and disability costs, and
stigma and discrimination (CHLN, 2005). Factors in the workplace that shape health
outcomes include job security, work environment, occupational stress, work hours,
and, personal job growth (Mikkonen & Raphael, 2010). This makes it more
precarious for PHA’s in the

__________ ___ __________________________

.,
,
wor orce as many do no

“Historically, many gay and lesbian individuals fled
small-town and rural American seeking community
and social resources in urban areas. Those who
Sfay m ruraj areas, return to rural areas, or seek out
country living face many difficulties because of
social, political, and religious conservatism”
(Kulkin, Williams & Woodruff, 2005, pg. 429)

disclose their status out of fear for
repercussions. Employment
standards do not always take into

consideration people with episodic illnesses and most places of work do not have an
employee HIV/AIDS policy.
Social Environment
Social environments create a better quality of life for people. They are mentally,
physically, spiritually and physically supportive. Social environments are both
personal and communal. They can provide people with the means to move beyond
personal challenges and to ‘in the moment’ be capable of living free from weights in
their personal lives. In short, social environments enable people to manage life’s
crises, which in turn, assist them to stabilize through being a part of and participating
in something greater than themselves (Guilford, 2000). People need to feel a part of
something greater, even if that ‘greater’ is a small piece of their community. It gives
them purpose.

31

Physical Environments
When looking at HIV/AIDS we should take into consideration the geographic
location. Many people living with HIV/AIDS face risks to their health due to their
geographical location. According to the 2006 Census, “Nearly half (47%) of all
Aboriginal people in Canada live either on-reserve or in a rural area, which includes
remote areas, small towns, villages and other populations with less than 1000
people” (Statistics Canada, Physical Environments, par. 2, 2006). This correlates
with the statistics regarding the Aboriginal population mentioned earlier in the
document.
The north can be a harsh place to live due to extreme weather conditions, poor
roads, and wildlife, not to mention a lack of healthcare professionals, transportation,
counselling services and confidentiality (Jackson & Reimer, 2008). These are all
barriers to preventing access to treatment. There are so many small communities
along the highways in northern British
Columbia. Often when driving, you will pass
a community and not even know it because
the markers (signs) are hard to see and there
are only a few buildings alongside the
highway. The people in these communities
Picture taken Mount Robson Area
(Rural/Remote areas)
© Christal Capostinsky, 2011

often have to travel an hour or more just to
get to a market to purchase food supplies.

Geographical location is not the only aspect to include when discussing physical
environment. Other things under this subject include shelter, air quality, community,

32

transportation and safety. All of these factors significantly influence our physical and
psychological well-being (Public Health Agency o f Canada, 2003). If we have poor
health to begin with, it makes it all the more important to seek supports and address
the issues. One might think that a solution would be to move to a larger community
that will meet your needs. As reasonable as it might sound, it is not always an
option. It is where their homes are situated. Their families are close by. Their
employment is non-transferable. There are often many varying reasons. For
younger people the culture shock of a big city can be a dangerous temptation that
leads to crime, drugs and violence.
Personal Health Practices and Coping Skills
How people live their lives and the choices they make will affect their longevity
and well-being. Poor health practices include alcohol, drugs, smoking, unsafe sex,
risky driving, diet, coping skills, and more (Public Health Agency of Canada, 2003).
This can be a predictor for HIV/AIDS or it may sometimes come afterwards with poor
coping skills and/or neglect of self-care. The skills and capacities of individuals are
derived from early childhood development. People from marginalized and/or
disadvantaged populations have an increased risk of contracting HIV/AIDS. It has
been my experience in working with people living in poverty and marginalized
populations that their health practices and coping skills are lacking. This increases
their vulnerability to HIV/AIDS.
Healthy Child Development
A number of studies and reports have been developed in accordance to
childhood development and risk implications of HIV transmission. There are a

33

number of findings from these reports. Children raised in lower income fam ilies enter
adulthood with lower socio-economic status and poorer health (Case, 2001). Rates
of Childhood sexual abuse among HIV infected persons are increased compared to
general populations (Allers et al, 1993). Of all the literature pertaining to this, the key
factor is not that children who experience trauma, abuse and neglect in childhood will
contract HIV in later years, but rather that children who experience this in childhood
are more likely to engage in high risk activities as youth and/or adults. This in itself
increases their risk for contracting HIV/AIDS. There are a number of programs that
have been developed for families with young children as a means to promote
healthier children and healthier families.
Health Services
Health Services are crucial to our physical well-being. All of us need access to
healthcare. It is what enables us to live healthy lives. Health services comprise of a
variety of professionals across the medical sector, including mental health and
naturopathic options. The larger the community, the more choices we have for our
health needs. It is important to note that although there are health services in our
communities, not everyone accesses them. This happens for many different
reasons. Lack of trust, poverty, social isolation, mental health problems, and poor
standards of care are just few of these reasons.
People living with HIV/AIDS require a higher standard of health care, which
means the availability of knowledgeable health care practitioners. This is not always
possible. In situations like this, the patient may have to travel a distance to receive
adequate healthcare. Transportation may not be the only barrier to achieving the

34

necessary care. Physical health, mental health, addictions, childcare, literacy, and
financial issues also impact the ability to access treatment.
Gender
Gender matters in health and care. The point may seem obvious, but it has only
recently been acknowledged in health policy and research. - Pat Armstrong, 2009
(as taken from Mikkonen & Raphael, 2010, p. 44).
Gender is a relatively new concept introduced to the social determinants of
health. Out of fact, not spite, it is important to note that “women experience more
adverse social determinants of health than men” (Mikkonen & Raphael, 2010, p. 44).
Generally speaking, women carry more responsibility for raising children and taking
care of housework. Women also work in lower paying jobs and face more
discrimination in the workplace, (2010). In much of the literature gender and race are
parallel to one another. Women from minorities are more vulnerable. Some of the
reasons women are more vulnerable include: biological susceptibility; lack of
economic resources; power imbalances in relationships which may lead to abuse
and/or violence (Public Health Agency of Canada, 2006).
“There is also evidence that gay, lesbian, and transgendered Canadians
experience discrimination that leads to stress that has adverse health effects”
(Mikkonen & Raphael, 2010, p. 44). There are policies that governments can put in
place to reduce the gender inequality; however, these are things that social workers
are still fighting for today. Whatever the circumstance, it seems that there is still so
much more to change when we think about how far we have come in regards to
gender inequality.

35

Culture
Culture is not only customs and beliefs that come from within fam ily traditions.
They are also created by the outside world and placed on us as human beings.
Chang (2008) states two components of culture within the autoethnographical
method: the first being that “culture outside individuals considers culture as a
bounded whole, with which a group of people is defined and characterized” (pp. 1718). Secondly, Chang states that culture is within “people’s minds” (p. 20). Though
there are different perspectives pertaining to this, I perceive this as how people
themselves define culture within their own lives and experiences.
In keeping with the topic of HIV/AIDS, health can be affected by one’s socio­
economic environment. This is largely determined by dominant cultural values that
contribute to the perpetuation of conditions such as marginalization, stigmatization,
loss or devaluation of language and culture and lack of access to culturally
appropriate health care and services (Public Health Agency of Canada, 2003). There
are exceptions to the rule; however, for the majority of people who come from
minorities that face stigma and discrimination it can be challenging to get beyond the
pre-defined cultural norms.
The culture of ‘social norms and traditions’ create barriers due to gender roles,
religion, and sexual practices. For example, in many African countries, women are
not allowed to use contraception and are at increased health risk due to the lack of
power they have in relationships (Scott, 2009). Another example could be religious
beliefs that prohibit the use of medicines and medical practices.

36

Chapter three provides a comparative analysis of three similar global studies
around GIPA. Though diversity within countries is apparent, it is also important to
look at the similarities that people face in light of the diversity. When it comes to the
destruction caused by HIV/AIDS, maybe we are not so different after all.

37

CHAPTER THREE

A Comparative Analysis
For the purpose of comparison for the study in this thesis, I have chosen three
other global studies to summarize. The first study looks at HIV/AIDS in five very
distinct countries: Benin, Brazil, Cambodia, South Africa, and Ukraine. The second
study focuses on PLHAand GIPA in Burkina Faso, Ecuador, Zambia and
Maharashtra State, India. The final study follows GIPA in Cambodia, India and
Indonesia. The following is a summary of each study:
Study One
OUT OF THE SHADOWS: Greater Involvement of People Living with HIV/AIDS
(GIPA) in Policy (Stephens, 2004)
This particular study reviewed the legislative and policy commitment in relation to
GIPA. The researchers interviewed senior policy makers and leaders of the national
PLHA movement or network in each country. Twenty-five semi-structured interviews
were conducted in five countries. The issues looked at included GIPA awareness,
PLHA involvement in national planning, benefits of involvement, and barriers and
challenges to PLHA involvement.
The findings included:
1. Awareness of GIPA - While many people understood what the GIPA principle
represents, there were different interpretations of the term GIPA.
2. Involvement - There was consistent PLHA involvement at the national level in
all countries.

3. PLHA Identity and Representation - a key factor that affects PLHA
involvement was a person's right to confidentiality versus the need to publicly
disclose in order to promote GIPA. Another finding was the ides of
collaborating with non HIV positive allies.
4. Benefits of GIPA - For PLHA's, involvement can lessen shame, stigma,
isolation, and depression; furthermore it can increase self-worth and re­
establish social relations. The study also notes that when it comes to policy
involvement, PLHA's have the knowledge of understanding what works when
it comes to service implementation. This finding created a bridge from policy
development to implementation at the frontline. Other benefits included
greater HIVAIDS awareness, more focused research, and more effective
HIVAIDS communication strategies. It also determined that GIPA creates
improvement at the policy level around the capacity o f various sectors to
respond to HIVAIDS. Lastly it benefits organizations by lending legitimacy to
the cause and promoting the management of health policy.
5. Barriers to GIPA - Stigma and discrimination are consistent in all of the study
countries. The lack of skills, articulacy and knowledge around HIVAIDS at the
personal level and policy level continues to be a barrier. The GIPA principle is
unsupported by, or ill-defined, in policy and legal frameworks leading to
uncertainty in defining and interpreting responsibilities in implementation. A
more detailed understanding and rationale for GIPA at the policy level is still
elusive. While the principle of involvement may enjoy significant support

39

among some policymakers, promoting it as an effective instrument o f the
broader HIV/AIDS response is problematic.
Study Two
Greater Involvement of PLHA in NGO Service Delivery: Findings from a Four-Country
Study (Horizons, 2002)
This study used both qualitative and quantitative methods. Data collection
included individual and group interviews, focus group discussions, observation,
service statistics, and a questionnaire. There were 745 participants consisting of HIV
positive and negative service users, NGO staff, and volunteers, and such key
informants as policymakers, health professionals, and community leaders. In all four
countries, PLHA's were involved in the participating NGOs as service providers,
service users, or both. Combining all countries involved, there was approximately
37.5% PLHA representation in the study. Criteria examined in regards to PLHA
participation included time spent on and regularity of activities; remuneration:
financial, material, technical and psychological; skills used; skill development
provided by organizations; scope and autonomy o f decision making; and, level of
visibility: both internal and external.
The research teams used a participatory approach throughout the study,
whereas the NGOs in each country were actively involved in study design,
implementation, and validation and interpretation of the findings. At the start of the
study an orientation workshop was held in each country. This allowed participants to
become familiar with basic research concepts such as rationale, process, relevance,
and methodology. At the end of the study, anther workshop was held in each country

40

to give data analysis and interpretation so that strategies could be identified to
increase PLHA involvement.
The findings included:
1. There are four distinct types of PLHA involvement: access to services;
inclusion; participation; and, greater involvement.
2. Involvement in NGO activities can have therapeutic effects for PLHA.
3. PLHA involvement strengthens NGOs.
■4. The socioeconomic context strongly influences PLHA involvement.
5. PLHA involvement should not be equated with public disclosure and visibility.
6. Greater PLHA involvement requires creating a supportive NGO environment.
Study Three
Challenges to the Meaningful Involvement o f HIV-Positive People in the Response to
HIV/AIDS in Cambodia, India and Indonesia (Paxton & Stephens, 2007)
This study, similar to the study in 2004 by David Stephens, examines challenges
to HIV-positive people’s involvement in AIDS policy making and project design and
implementation in Asia. The study consisted of forty-eight semi-structured interviews
with targeted key informants from three countries. The criteria for participation was
that they were in positions of moderate to high level decision making at state or
national level. Half of the participants were PLHA's. Interviews were audiotaped,
transcribed and analysed using thematic analysis. Interviews looked at levels of
involvement; challenges and barriers of GIPA implementation; examining AIDS
related stigma and how it impacts PLHA involvement; and, assessing necessary tools
to sustain effective and healthy involvement.

41

After completing this study, findings showed consensus that there was a lack of
confident, articulate and skilled positive people to take on positions of responsibility
that GIPA was lacking due to a range of diverse factors:
1. Stigma and Discrimination
2. Medical Support
3. Lack of Counselling
4. Financial Survival
5. Lack of Skills Training
6. Tokenism and Exploitation of Positive People by NGOs
7. Constraints of Government
8. Benefits of Involving People with HIV in the Response to AIDS
Comparative Analysis
All of these studies implemented some form of GIPA in the research process. It is
apparent that they understood the importance of GIPA but wanted to delve further
into the context of the lived experience in different countries. While each of these
studies was unique in their own project, they all shared similarities. Some of these
similarities included the constraints of government; financial survival; PLHA supports
in regards to GIPA; the risks associated with public disclosure and visibility; stigma
and discrimination; lack of skills; and, the benefits of involving PLHA's in the
response to AIDS.
Stigma appears to be a common issue among all of the studies. “ In all countries,
respondents said the greatest barrier to GIPA is the stigma of being identified as
positive” (Paxton & Stephens, 2007). “The stigmatization and discrimination of

42

people infected and affected has been a universal experience that people with
HIV/AIDS around the globe have shared. The extent o f HIV/AIDS-related stigma and
the quality of the response to this stigma are perhaps the central factors determining
the progress of GIPA” (Stephens, 2004). Horizons states “PLHA are highly
stigmatized in all four countries because of the association of HIV/AIDS with certain
behaviors and population groups” (2002). It seems that no matter we do, stigma
continues to be an issue at the forefront for PHA’s. This is often a result of lack of
education among the general public; furthermore, the crisis of the AIDS epidem ic in
pre-ARV time (1980’s-mid 1990’s) painted a picture of AIDS that was horrific and
instilled fear in many people. It was a death sentence. In light of this, it is very
challenging to shake these images form the minds of the general population.
Increasing the knowledge of PHA’s is important to perpetuate the HIV/AIDS
movement. We need to have ongoing involvement of PHA’s in order to maintain the
voice of HIV/AIDS. As it stands worldwide, this has become a barrier. “A
fundamental requirement and an implicit demand of GIPA is to increase the
knowledge base of PLHAs” (Stephens, 2004). “Positive leaders, particularly people
involved in policy making, may not have the confidence or skills to sustain positions
of responsibility, or may get overburdened. Many are thrust into positions without
training and with little regard for the technical support they need to contribute
effectively” (Paxton & Stephens, 2007). It is imperative for organizations to build the
capacity of PHA’s through education and skills training (Horizons, 2002). W e cannot
expect PHA’s to contribute effectively to policies and programs if they do not have the
necessary skills to undergo such valuable contributions.

43

GIPA is an important tool because it gives PHA’s a sense of empowerment and
adds meaningful context to programs, policies and services. “The value of GIPA is
that it allows the human face and voice of the epidemic to be present and heard in all
analyses, planning, and discussions about the epidemic” (Stephens, 2004). “The
GIPA Principle suggests an agenda of empowerment through recognising and
supporting the voices of positive people in decisions that most affect them” (Paxton &
Stephens, 2007). Horizons found congruencies among their participants that spoke to
empower PHA’s through involvement in NGO activities (2002).
These reports were interesting because they show similarities to my research in
northern Canadian communities. While the idea of GIPA has been around for more
than 20 years, it has evolved differently in each country researched. They show
similarities in barriers and benefits, but maintain a clear definition of how to
implement it to the benefit of their particular population. GIPA was clearly explained
both historically and in definition. The similarities to this study include barriers such
as stigma and discrimination, lack of government funding and the absence of skills
training. The benefits include PHA involvement strengthening ASO’s, therapeutic for
PHA’s, and more effective HIV programs/strategies.
My study differed from the above projects because I did not incorporate GIPA
during the research process. I did not ask participants of their HIV status, nor did I
need to ask them. As someone who has been living with HIV for many years, I
wanted to hear from the service providers.
For me, one of the important things to acknowledge is tokenism within AIDS
service organizations. I did not expect to hear this from the service providers during

44

my focus group sessions. I can think of two different reasons for this. First, it is not
something that organizations would acknowledge happening in their agency. They
may not want to own up to it, or they might not even realize that they had contributed
to it. Second, it is hard to see tokenism when you are on the outside looking in.
Tokenism is something that is felt by the person(s) who are being exploited. If
you do not see it happening, then most likely you w on’t even think twice that it could
be happening in the agency. Those of you reading this might be thinking “why would
someone enable tokenism?” Well, if involving PHA’s makes your organization look
good, why think twice about how you are doing it? I must clarify for the readers that
intentional tokenism is not as common as unintentional tokenism. I have to believe
that for the most part, people work in good faith and are morally good.
The following chapter discusses my research methodology and design. I do not
think that it is the results of the research that are necessarily meaningful, but rather
the process in getting there. The chapter discusses my research design from
beginning to end; furthermore, it looks at my thought processes throughout.

45

CHAPTER FOUR

Research Methodology & Design
“As researchers, we dutifully record the stories o f our informants; as writers we
translate their stories into acceptable academic prose" (Tierney & Lincoln, 1997, p.
23).
Introduction to Research
Initially, the objective of this research was to assess the involvement of people
living with HIV/AIDS within service organizations in ‘northern and rural communities
across Canada’. It studied the barriers that people living with HIV/AIDS face in
regards to their involvement, as well as how to address them within the global context
of the definition of the GIPA principle. The project was meant to assist not-for-profit
organizations nationally to implement better practice around GIPA in their
communities. It was intended to be a gateway to facilitate meaningful dialogue
around this issue with many participants across Canada.
In saying this, I experienced stumbling blocks throughout the research process.
One of them was the distance between Eastern Canada and Prince George.
Originally I intended to hold focus groups in Western Canada and introduce Eastern
Canada to the research by conducting an analysis through surveys. The focus
groups were completed by September 2012; however, as the months went by, the
response through surveys was limited and I found that the responses coming back
were not as bountiful in content as compared to the focus groups. It is challenging to
gather data qualitatively when conducting surveys. I do not find it to be a meaningful

46

research tool because there is no interaction involved between researcher and
participant.
I am comfortable the way the research was decidedly conducted. I think that had
I used surveys, as originally planned, it would have compromised this research. The
value came from the meaningful conversations during the focus groups. This is
something that cannot be captured while conducting surveys. At one point, I was so
interested in gathering as much information as possible, when realistically I should
have been looking at the data in terms of the value of storytelling. The value is not
about how much information is collected, but rather it is about the processes
(including meaningful engagement) that bring about the details of the stories shared.
The few answers that I received back from the surveys were impersonal and
rushed. I understand this. As a former service provider, I recognize the importance
of people’s time. How many surveys, interviews and focus groups do we have to
participate in before the cause is deemed justifiable to support? There is a perception
out there that issues are over-researched and under-serviced. I know this because
working in the field there is always so much research being done but very little
implementation of solution based programming. How much more do we need to
know about HIV before we receive adequate funding to provide the services for
prevention, support and education? As rhetorical as these questions might be, I do
have an answer which will come forth in the conclusion. We, as people need to
choose the battles that we engage in. The AIDS movement is one that has meaning
for me.

47

I had hoped that I would receive enough feedback because the nature of my
topic is quite new. There is some academic research globally around GIPA, but in
Canada, not so much. We, in the movement, know what GIPA is. We know what the
barriers are. We know what needs to be done. Unfortunately, unless academic
research is initiated, fewer people will learn about the needs surrounding this issue.
Originally I had planned for this to be a Canadian study that encompassed
communities from the East Coast to the W est Coast. Eventually, I decided that this
project was just too big to achieve within the timelines I set out for myself, so I
redirected towards a Western Canadian study. This was something that was much
more realistic and manageable within the objectives that I set out to accomplish. For
me it was a question of time, resources and commitment. A future study is always a
possibility. This is a stepping stone to that path.
Research Method
The research was conducted using qualitative methods. Qualitative research
looks at understanding the social phenomena by focusing on the participant’s
interpretations (Bryman & Teevan, 2005, p. 144). It uses words rather than
quantitative data.
Autoethnography is an approach to research and writing that seeks to describe
and systematically analyze (graphy) personal experience (auto) in order to
understand cultural experience (ethno)” (Ellis, 2004; Holman Jones, 2005). I chose
to use autoethnography as my method because I wanted to share my own
experiences and knowledge in a way that is academically credible. Autoethnography
is a “research method that utilizes the researchers’ autobiographical data to analyze

and interpret their cultural assumptions” (Chang, 2008, pg. 9). Culture is not always
about traditions and customs, it is about lived experience. For me the lived
experience includes the “autopathography” (Chang, 2008, pg.47) of my life. When I
wake up every day, HIV is always present in my life. Some mornings it kicks me in
the ass with bouts of vomiting and severe nausea. However, no matter what the day
brings, I need to plan in accordance to the symptoms present. I do not have the
privilege of taking days off work if I am not feeling well. The bills need to be paid.
The activism does not stop because my body feels like crap. It has now ju st become
a part of my existence. I accept it because it is what it is.
Chang (2008, pg. 64) asks a profound question in regards to the researcher’s
cultural perceptions, “what cultural baggage do you bring to the research encounter?”
Cultural baggage....My cultural baggage is what strengthens my research. Through
autoethnography I am able to share my lived experiences using a highly effective
research tool. I am always aware of the bias that could hinder my perceptions and
create unrealistic insights. I have the many instructors throughout my educational
journey to thank for this. They kept me on my toes, so to speak, and fostered my
ability to accentuate my bias to my own benefit.

Recognition is the first step in

acknowledging our lived experience. The second step is separating the ‘s e lf from
‘other’. Every human experience is different. It is what makes us unique as
individuals. Yet it is the generalized similarities that bind us together in camaraderie.
I will allow myself that assumption because it feeds the sense of belonging that I
need to co-exist in a world so full of chaos.

49

How people live speaks of culture. I value the knowledge that I have gained over
the last seventeen years living with HIV/AIDS, as well as the last decade that I have
spent working in the HIV/AIDS movement. Through autoethnography I am able to be
the main narrator and use the experiences from others, as well as my own, to
strengthen my knowledge (Chang, 2008). Using my knowledge along with anecdotal
knowledge through others, textual knowledge and knowledge through a literature
review, I am able to triangulate the information into academic fact (2008).
According to Held (1980), the purpose of theory is
to analyse and expose the hiatus between the actual and the possible,
between the existing order of contradictions and potential future state.
Theory must be oriented, in short, to the development of consciousness
and the promotion of active political involvement (pg. 22).

In my research I have used a critical theory lens. Many of the populations that I have
worked with have faced oppression in many different ways. I have found that it has
been a natural response to look at social issues from this perspective. Anderson
(2011) states “Critical theories aim to empower the oppressed to improve their
situation” (Ch. 2, par. 10). It is clear that a person can see this when comparing
critical paradigms to other paradigms. Critical theory looks at issues in its entirety. In
order to understand something it is essential to break it down to see how it is socially
constructed. If we understand how oppression is constructed, then it brings us one
step closer to empowerment. Critical Social Theory results in planned change. The
intention of this research is to use it as a means to look at the challenges of GIPA
and create an awareness that will allow for better implementation of this principle in
northern communities.

50

According to Anderson,
to serve their critical aim, social theories must (a) represent the social
world in relation to the interests of the oppressed— i.e., those who are the
subjects of study; (b) supply an account of that world which is accessible
to the subjects of study, which enables them to understand their problems;
and (c) supply an account o f the world which is usable by the subjects to
study to improve their condition (2011, Ch. 2, par. 10).
My research aims to cover all three points of social theory. I am invested in
GIPA as a positive person and use my education to represent other people living with
HIV/AIDS (PHA’s). This research will be made available for HIV positive people to
access. Furthermore, the goal of this study is to create awareness so that PHA’s can
improve the world they live in.
Through the process of “data collection, data management and data analysis”
(Chang, 2008, pg. 122), I was able to create meaning within the constructs of the
research I facilitated. Each step in this process informs the other. They each
intertwine to produce analytical and interpretive data (Chang, 2008). The process
was fun as I was able to decide what information I wanted to share and how it would
best benefit the reader.
Sample
The only requirement for participants was that they work in northern community
AIDS Service Organizations. I predetermined four communities in Western Canada to
participate in focus groups. Agency directors in Smithers, BC, Prince George, BC,
Grande Prairie, AB and Whitehorse, YK were contacted to request participation in the
study. The unexpected benefit from this was that Grande Prairie had two satellite
locations that participated. This meant that instead of having four communities

51

involved, I ended up with participation from six communities. All of these communities
were diverse in geographic location.
Focus Groups
"Social Scientists have used various forms o f group interviews since at least the
1920’s’’ (Morgan & Krueger, 1998).

Focus Groups
Community
Whitehorse, YK
Grande Prairie (Satellite
locations through Skype Fort McMurray, AB and
Peace River, AB )
Prince George, BC
(Satellite location through
teleconference - Smithers,
BC)

Date
July 19, 2012
August 20, 2012

September 18,
2012

No. of
Participants
4
3

12

I facilitated focus groups with service providers from northern/rural AIDS service
organizations. According to Morgan & Krueger (1998), focus groups “are a research
method for collecting qualitative data, they are focused efforts at data gathering, and
they generate data through group discussions”. It was not my intent to conduct focus
groups with known HIV positive persons, thus I did not ask for persons to disclose
their status. My questions adhered to service provision (see appendix A). All
participants were over nineteen years of age. The focus groups allowed service
providers to share their knowledge and understanding of access to services for
people living with HIV/AIDS, the Greater Involvement of People Living with HIV/AIDS
(GIPA) principle, and strengths/limitations of implementing GIPA in their community.

52

All participants were required to sign a document pertaining to informed consent and
given the opportunity to withdraw their participation at any given time without
consequence. It should be noted that no person withdrew their consent during the
research.
Initially, I planned to tape record the focus groups. I ended up not tape recording
this project for three different reasons. First, it has been my experience that the level
of comfort lessens when people know that they are being tape recorded. Second, I
did not want to chance any potential malfunctions to the tape recording process
and/or run into poor sound quality for transcription. Lastly, as not having an
assistant, this would have been much more work for me to transcribe taped sessions
that were at least one hour in length. Though some might argue that I would have
better recorded information, to mitigate this issue I asked the participants to speak
slow and pause when I needed more time to write. As this research was not new to
me, I had an advantage in understanding the issue. It could be said that I had my
own hypothesis and used this research as an academic instrument to validate and
share the information that I already possessed.
For me, as an HIV positive Aboriginal woman, it was such an empowering
experience to sit down with a group of people and talk about how important it is to
work with PHA’s. The meaningful discussion that comes from discussions such as
this is invaluable. “An important assumption held by autoethnographers and
qualitative researchers in general is that reality is neither fixed nor entirely external
but is created by, and moves with, the changing perceptions and beliefs of the
viewer” (Duncan, 2004, p. 30).

53

Process of Validation
Pyett (2003) states “ in qualitative research, we seek not to measure but rather to
understand, represent, or explain something, usually some fairly complex social
phenomenon” (p. 1170). This is where storytelling is a valuable tool. It is crucial for
me, the researcher, to understand the meaning behind the stories. I am a means for
the participants to relay their information according to their understanding. It is just
as valuable for me to share my views as long as their stories do not get lost in my
own interpretations. Qualitative research is a new phenomenon - way of studying
things - in the research world.
In using autoethnography, I was able to include my own narrative voice in this
document. This was the part that was important to me because I did not want to just
do research “for the sake of doing research”. I wanted it to encompass the stories
and words of those at the forefront doing the work with people living with HIV/AIDS.
In the beginning it was challenging because there are many different ways to use
autoethnography. The great thing about autoethnography is that there is no
individual style that is “inherently superior than the other” (Chang, 2008, p. 148).
The advantage I had when I walked into the focus groups to do my research was
my HIV status. The people at the table were aware of my experience of living with
HIV as well as my experience within the HIV/AIDS movement. That assisted in
building rapport with the focus group participants. I was there to collect data, but I
already had my own data collection through other similar research and the
knowledge I obtained from speaking to people from communities across Canada for
the past ten years. I should clarify though; I had no intentions of assuming I knew it

54

all. I was only looking to verify what I had already learned. I was also open to the
idea of learning new things throughout this process. Expecting the unexpected is
good practice when it comes to conducting research.
Process of Analysis
The biggest challenge for me during the research process was to set aside my
thoughts and responses in order to hear what the participants had to say. When I
say this, I mean “really hear” them. It was not about my interpretations, but rather
how they viewed what was happening in their own communities. There was a lot of
discussion around their input because I wanted to make sure that I was sharing their
stories without misinterpretation. In the process of analysis with qualitative data, our
interpretations are “tested by further examination and checking, including the
examination of our own role in the construction of meaning” (Pyett, 2003, p. 1171).
When conducting the focus groups I took hand-written notes during the group
discussion. Following the focus groups, I sent the transcriptions to each of the
participants to review what was transcribed. I asked the participants to clarify our
conversation, make changes and/or delete comments. This was done to ensure that I
understood their words to the best of my ability as a researcher. After feedback was
received, I sent them a draft of my research results (as it includes quotes in narrative
form using their voice) for final review.
“Coding represents a key step in the process” (Bryman & Burgess, 1994, p. 5). I
spent the time analyzing the data in my home environment. I covered the walls with
paper and wrote down the participants responses on each paper. For duplicate
answers, I would place a check mark so that I was able to spot patterns and

55

frequencies. I typed up my findings rather quickly because I did not want to miss
anything in this process. I did not read too much into the data, as it was fairly black
and white (which may have been due to my experience). For me the biggest concern
was demonstrating a clear picture of northern and rural Canadian communities. It is
so much more challenging working within communities that are vastly different
geographically, economically, culturally and socially. This was the most important
piece of my research: to assist the reader to understand the ‘complexities of the AIDS
response’ in northern and rural communities. After the final copy was completed and
published, I sent all participating agencies copies of the document. All
documentation will be securely stored for seven years and then shredded.

56

CHAPTER FIVE

Findings
Whitehorse. Yukon

m

The picture to the left was
taken outside of the AIDS
Service Organization (Blood
Ties Four Directions) in
Whitehorse. Used with
permission. Courtesy of
Blood Ties Four Directions
Centre, 2013.

Whitehorse, also known as the
Wilderness City, has a population of
approximately 25,000 people. It was
incorporated as a city in 1950 and
became the capital city of the Yukon
in 1953. The land area of Whitehorse
is 413.48 square kilometers and sits
at an elevation of 640 meters. The

The city of Whitehorse (above) is used with
permission. Courtesy of Adam Van Dusen,
2013, http://flyindutchman.blogspot.ca

economic landscape includes mining, transportation services, tourism, and
government services (Whitehorse Travellers Guide, 2008).
Focus Group Demographical Questions

57

The focus group took place at Blood Ties Four Directions Centre (picture shown
above). It was a small group consisting of four staff
from the organization. Two participants identified
Whitehorse as both northern and rural. One
participant noted that their reasoning was due to the
organization delivering services to rural areas around
Whitehorse. The other two participants identified
Whitehorse as a northern community. According to
the participants, Blood Ties Four Directions Centre
provides services to eight HIV positive people living in
Whitehorse. They also provide services for people

WHAT ARE OUR
SERVICES?
Outreach
Advocacy
Counselling
Financial assistance
T ransportation
Legal assistance
Food program/nutrition
Harm reduction
Housing
Facilitating skill development
Speaker bureau
Governance
(Blood Ties Four Directions,
2012)

who are diagnosed with Hepatitis C and those who are co-infected with both Hepatitis C
and HIV. These numbers significantly increase their client population.
Of the eight PHA’s accessing services, five of them are Aboriginal and three are
Caucasian. Two are women and six are men. They do not have any HIV positive
clients that identify as being transgendered. The
majority of clientele accessing services are
heterosexual; however, they have one client who
identifies as homosexual (please refer to page 48)
and one as two-spirited. Thirty-eight percent, or three

GIPA =
Nothing
About Us
Without Us

people are active drug users. When I use the term
‘active’ it means that they have used drugs within the last six months.

58

Qualitative Questions
My trip to Whitehorse was the farthest north in Canada that I have ever travelled.
The geographic location alone gave me an appreciation fo r the challenging work that
happens with PHA in the northern communities. Blood Ties Four Directions Centre
sees GIPA as a meaningful engagement tool that only serves to enhance the current
work that organizations do with their clients. It is about PHA’s having involvement in
programs, decisions, peer-based support, and governances. Furthermore, it builds
capacity within the organization to provide the services that clients want and need.
GIPA is a fairly recent addition to the organization. There is always the hope that it
becomes bigger, but they understand that it is also about building capacity to provide
GIPA in a meaningful and effective way.
Previously they had PHA involvement on their board of directors. They have
PHA volunteers that help out in the kitchen on Wednesday lunches. Other ways they
implement GIPA is through drug user support groups and PHA speakers with
outreach on the road (outlying communities). They continue to try to find
opportunities for positive clients to attend conferences and skills building events.
According to one participant, “it feels like right now we are using GIPA more than we
ever have (i.e. programs, volunteering, and board involvement)” (personal
communication, July 19, 2012).

59

W hy G IPA is important:
a)
b)
c)
d)
e)

Gives PHA’s a say in the organization and the services provided;
People living with HIV need to feel that they are invested in something;
It provides a sense of responsibility to PHA’s: it is really encouraging.
It facilitates meaningful involvement;
It is important too so that a person continues to hold value within
themselves;
f) It’s about learning new things and it also keeps their self-esteem up;
g) It helps people to be role models for other people who aren’t there yet;
h) Shows people they are valued and have skills;
i) Gives them opportunities to show their skills and experiences. There
are gaps in services. Services are provided by the ‘white’ population
and many clients are aboriginal; and,
j) GIPA is important because it helps the clients understand the
organization better as well. When clients are more involved in the
organization they gain a better understanding and then become
champions for the organization. It’s a two way relationship and does
something for the organization as well.

The benefits of involving people living with HIV/AIDS include:
Insight PHA’s bring
Increase accessibility
Relevant programs
Peer mentoring
Story telling
Relationship building
Skill/Capacity building
Identifying gaps in services
Diversity
Good representation
Good evaluation technique
Gives more credibility (with communities and those we serve)
When asked about the challenges that Blood Ties Four Directions Centre face when
working with PHA’s they unanimously agreed that challenges do exist. Some of
these challenges include:

a) Board governance policies (teaching people how to understand them);
b) Capacity - skill sets, literacy, computer skills, and numeracy;

60

c) Organization has limited resources to build on those skills (both human and
monetary);
d) Drug/alcohol issues (reliability related to lifestyle);
e) Challenging for the staff to understand the processes of why it is challenging
and how to turn it into something positive; and,
f) Managing the expectations of the PHA.
Barriers to PHA involvement in AIDS service organizations:
[Note: This question may appear similar to the previous question but it is in fact
different. The last question pertains to the challenges that employees have in
regards to working with the PHA population. This question pertains to what the
service providers think are the barriers that prevent PHA’s from becoming involved in
AIDS service organizations.]
a) Stigma (people don’t want to come here [the organization], never mind being
“GIPA-ized”);
b) Street involved community is very small (word can spread quickly i.e. lack of
anonymity);
c) Lack of transportation;
d) Isolation (rural isolation);
e) Cost of transportation;
f) We don’t know who’s not coming here and why they are not. Stats are based
on who is accessing services. The real question is how many people are HIV
positive and not accessing services;
g) We have a few HIV positive white guys who are working, have supportive
partners/people in their lives, healthcare, etc. They don’t need our services,
and; and,
h) Stigma/discrimination among the different populations of clientele.
When asked if people living with HIV/AIDS have the necessary skills and
capacities to take part in the different areas within the organization, the answer
received was both yes and no (equally). The participants agreed that some PHA’s
potentially have the capacity and skill for peer support; however, they also
acknowledged the importance of not having problematic and/or chaotic drug/alcohol
issues in their lives.

61

Group participants discussed that, in light of organizational capacity, they could
not have someone involved who needed training from the ground level. It was also
mentioned that some skills aren’t transferable. This means that some people might
be good out in the community speaking but not in the
office working. Other skills that would be important for

What I Love about my
Job:

PHA’s to possess include professionalism, boundaries,
self-reflection, stability and literacy. Literacy skills
would include computer, communication and
numeracy.
The kind of assistance that their organization
would need in order to help promote and implement
GIPA include: a government sponsored step-student
type program (where the government pays half the
salary); funding commitment (takes at least two years
to get the concept working effectively); and, to see

Working with so many
other people and it is
‘neat’. I have this team
and then I am a part of
so many other teams.
Developing trusting
relationships.
The privilege of being
a part of someone's life
and them allowing me
to walk with them in
their most vulnerable
moments.
We get to talk about
sex and drugs all da

examples of organizations that have successfully
implemented GIPA (specifically small rural northern
communities).
Grande Prairie. Alberta
(Also includes data from their two satellite locations in
the Peace County - Fort McMurray and Peace River)

Love the freedom and
autonomy I have with
my job.
I love the population
that we serve. I care
deeply about them.
Focus group
participants, 2012

62

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—■»»- -A

,.

*gHL . :.:;•

a*S
* .- *
m

Picture of Grande Prairie, AB (Aerial
Picture of Grande Prairie, AB used with
permission. Courtesy of Jamie Poirier,
view) used with permission from Grande
Prairie Regional Tourism Association,
2013.
2013
Grande Prairie, also known as the Home of the Trumpeter Swan, has a
population of approximately 55,000 people (Wikipedia, Grande Prairie, 2013). It is the
largest city north of Edmonton, Alberta (the capital city of Alberta). It was
incorporated as a city in 1958. The land area of Grande Prairie is 72.80 square
kilometers and sits at an elevation of 669 meters. The economic landscape includes
oil and gas, forestry, agriculture, retail and tourism (City of Grande Prairie, 2012). The
above pictures were taken outside of
Grande Prairie; however, the landscape
for the entire Alberta Peace County is
similar in nature. Much of the land
consists of prairie ‘as far as the eye can
see’.
Fort McMurray has a population of
approximately 76,000 people (Regional

Prairie country found throughout the
entire peace county. Used with
P®7?ission- Courtesy of Jamie Poirier.
I o.

Municipality of Wood Buffalo, 2013). It
is not incorporated, thus is known as the largest unincorporated city in Alberta,

63

Canada (Fort McMurray Tourism, 2013). Fort McMurray is an urban service area in
the Regional Municipality of Wood Buffalo in Alberta, Canada. The land area of Fort
McMurray is 59.89 square kilometers and sits at an elevation of 370 meters. It is
considered a major hub in oil production in Canada. The economic landscape
includes the oil sands, natural gas, oil pipelines, forestry and tourism (Wikipedia, Fort
McMurray, 2013).
The town Peace River was founded in 1914 (Wikipedia, Peace River, 2013). It
straddles the banks of the Peace River and has a population of approximately 6,700
people (Town of Peace River Alberta, 2010). The land area of Peace River is 25.92
square kilometers and sits at an elevation of 325 meters. The economic landscape
includes oil and gas, forestry, and agriculture (Wikipedia, Peace River, 2013).
Focus Group Demographical Questions
The focus group took place at HIV North in Grande Prairie. Parallel to
Whitehorse, it was a small group consisting of three staff from the organization. Two
participants were physically present while the other participant working at a satellite
location in Fort McMurray was Skyped in. It is important to note that HIV North also
has an office in Peace River. Statistics from that location will be included in this
research. Two participants identified Grande Prairie as both northern and rural. One
participant noted that Grande Prairie could be considered urban if left separate from
north of the province. The one participant from Fort McMurray felt that Fort McMurray
was most definitely both northern and rural. The region HIV North covers includes the
North West Territory border to the Saskatchewan border to the British Columbia
border and finally to Grande Cache and Fox Creek. The figure below highlights (in

64

red) the area in Alberta, Canada that this one organization covers within their
mandate.
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According to the participants, HIV North provides services to thirty-two HIV
positive people living within their catchment: four in Fort McMurray, twenty-seven in
Grande Prairie, and one in Peace River. The following demographics are based on
PHA disclosure.
Grande Prairie

Of the twenty-seven PHA’s accessing services, forty percent of them are
Aboriginal, thirty percent are Caucasian, and thirty percent are other ethnicities.
Seventy percent are women and thirty percent are men. They do not have any HIV
positive clients that identify as being transgendered. All but one PHA are

65

heterosexual. Approximately half of the PHA’s accessing services are active drug
users.
WHAT ARE OUR SERVICES?
Fort McMurray

This satellite location initially opened

Education (schools, prisons,
agencies, nursing, practicum
placements, LPN program,
social work program)

March of 2012. They predict a growth in PHA’s
accessing services by the end of the first year.
Of the four PHA’s accessing services are from

Outreach (soup kitchen, street,
rotary house shelter)
Harm reduction (out of office
and pharmacies)

other ethnicities. All of them identify as women
originating from endemic communities. The
participant sharing these demographics said

HEP C programming (outreach,
peer mentorship, support)

that she was not sure if they were all

Building relationships

heterosexual; however, they did all identify as

Advocacy and lay support

having sexual relations with men. None of

Medicine delivery

them have disclosed active drug use.

Pre and post-test counselling

Peace River

W omen’s drop-in (sex trade
workers)
(HIV North, 2012)

The office in Peace River runs out of the
Sagitawa Friendship Centre. The one client accessing services in Peace River
identifies as a heterosexual Aboriginal woman who is not an active drug user.
Though there is only one client, this does not mean that this is the only HIV+ person
living in that community. It just means that this person is the only one who had the
courage to disclose their status.

66

Qualitative Questions

The participants see GIPA as being really important. It is not just about
involvement, it is about meaningful involvement. To them it is about volunteerism
and being involved in governance, program development, service delivery, and
_________________________

activism. The participants stated that the

I would say that anytime we do organization struggles with implementing GIPA.
a research project there is an
opportunity there to explain how Current|y there are on|y a handful of people who
they can be more involved in
the agency

gee k ejng potentially involved (due to life

Focus group participant, 2012 circumstances). According to the participants there
is no PHA representation on the board of directors (as far as they know there have
been no disclosures around positive HIV status). They fault the intimidation of the
governance model for this. The absence of PHA involvement is not from lack of
trying. The organization tries to implement it whenever and however they can
through invites, word of mouth, emails and events.
The staff at the organization has had good experiences working with volunteers
at events. According to one participant, “Socialization and culture are a big part of it”
(HIV North participant, personal communication, August 20, 2012). An important part
of GIPA for them is PHA’s sharing personal experiences through education. “It has
meaningfulness to it and provides a positive impact” (HIV North participant, personal
communication, August 20, 2012).

67

All of the participants agree that PHA
involvement is important. It ensures that the
needs of rural people are a priority and
guarantees that services are provided in a
meaningful way. Most of the existing research
deals with urban individuals living with HIV.
This creates a barrier for accessing information

“Even discrimination looks
different here. One year ago I
was having a conversation with a
person who had been
volunteering for a while. He
talked about how here the
discrimination he experienced
was mostly within his own
demographic. The conversation
was more around homophobia
but there were implications of
HIV as well”
Focus group participant, 2012

on successful GIPA implementation. They, as
service providers, struggle with the underlying fear that the general population in
Grande Prairie has in regards to HIV/AIDS. HIV does not have a face and does not
discriminate. This perpetuates fear. If there is a chance to involve PHA’s in a nondiscriminatory manner, it is beneficial to all. Some of the benefits that came from
focus group participants included:

Benefits of GIPA
a) Greater positive peer mentorship;
b) Young people being diagnosed are building
relationships with service providers. It would be so
cool to be able to hook up young people with
someone who has been living with HIV fo r many years
(for mentorship);
c) Education (positive impact coming from positive
people); and,
d) Potential benefit to the individual (learning opportunity,
seeing things through the eyes of service providers,
emotional benefits).

When asked about the challenges that the Peace region faces when working with
PHA’s they stated that they are not currently working with any PHA’s in their

68

organization. This is not from lack of trying on their part, but rather barriers such as:
fear of disclosure; capacity (i.e. mental health, addictions, skill base, economic);
apathy (PHA’s show no interest in activism/volunteerism); stigma; transportation;
seasonal weather; and, conflicting schedules for working PHA’s.
This particular focus group had two categories in regards to capacity and skill
building. First they discussed this in terms of a volunteer perspective, and second
they had discussions based on a work perspective. Volunteerism is unpaid work.
The work perspective focused on paid work (employment positions).
When looking at the volunteer perspective, participants noted that if PHA’s had
the means or willingness for this, skills and capacity would not be an issue. There are
ways that the organization could assist them in attaining the skills. With
volunteerism, not a lot of skills are required. It would depend on what the PHA
wanted to do within the organization. There are things for people at all skill levels.
When looking at the work perspective, the organization is requesting a certain
skill set required to do the work. The PHA would need skills specific to the job
including, but not limited to effective communication, computer and academic
education completion based on the job description. Not everyone, within this
population, has these skills.
When asked what kind of assistance they think AIDS service organizations need
in order to help promote and implement GIPA, their answer was very specific.
“From our experience in working at HIV North, PHA’s do not have a
desire to become involved in the organization. This is a town based in
economic growth and people want to make money. Others have
barriers that they experience which prevent them from becoming
involved” (HIV North participant, personal communication, August 20,
2012 ).

69

Smithers. British Columbia

Used with permission. Courtesy of
Shelly Lebreton-Mercer, 2013.

© Christal Capostinsky, 2013

Smithers has a population of approximately 6000 people. It is situated in the
Bulkley Valley about halfway between Prince George and Prince Rupert. It is the
service centre for the Bulkley-Nechako Region (approximately 20,000 people).
Smithers was founded in 1913 and incorporated as a town in 1967 (Tourism
Smithers, 2013). The land area of Smithers is 15.27 square kilometers (Wikipedia,
Smithers, 2013) and sits at an elevation of 494 meters (Tourism Smithers, 2013).
The economic landscape is based on logging, saw-milling, agriculture and mining
(Relocation BC, 2013).
Focus Group Demographical Questions
The focus group took place via teleconference at Positive Living North in Prince
George BC. The local AIDS service organization in Smithers is Positive living North
West. It is managed through Positive Living North in Prince George. The focus group
consisted of four participants (staff from the organization). All four participants
identified Smithers as both a northern and rural community. According to the

70

participants, Positive Living North W est provides services to twenty HIV positive
people living in Smithers.
Of the twenty PHA’s accessing services, eighteen of them are Aboriginal and two
are Caucasian. Eight are women and twelve are men. They do not have any HIV
positive clients that identify as being transgendered. All of the PHA's accessing
services identify as heterosexual. Seventy percent or fourteen people are active drug
users.

W HAT ARE OUR SERVICES?

Qualitative Questions
When I first asked about the participants
being aware of the GIPA principle, some
stated that they were not aware of it. Through
further discussion I was able to conclude that
they recognized the definition of GIPA but they
were not familiar with the term/acronym GIPA.
I was astonished considering the importance
that the organization placed on PHA

Drop in
General support
Advocacy
Harm reduction
Life skills
Employment assistance
Housing assistance
Computer
Educational workshops
Cultural activities
Referrals
Outreach
Hugs
(Positive Living North West,
2012)

involvement. What I came to understand was
that had I asked if they knew what the Greater Involvement of People living with
HIV/AIDS was, they would have said yes. As mentioned in the beginning of this
If you are not listening to people
who use the program then why
bother running them?

paper, acronyms can be deceiving. The
participants narrowed down their understanding of

Focus group participant, 2012 QIPA by concluding that GIPA was “full
participation and equal participation” (Prince George focus group, personal

71

communication, September 18, 2012). Furthermore, they specified the importance of
PHA involvement in program development and service delivery. One participant
noted that feedback during the program cycle was important for sustainability.
The participants stated that the organization implements GIPA in the following ways:
a) Surveys (services are member driven);
b) Frontline warriors program;
c) Education in the community;
d) Volunteering through the organization;
e) Asking for input (from PHA’s) before bringing services to outlying
communities; and,
f) Asking PHA’s what they want and what is effective for them.

Benefits of GIPA
a) They [PHA’s] are the experts;
b) It [GIPA] makes the organization successful;
c) Involving PHA’s keeps programming relative;
d) PHA’s skillset across the board can be great;
e) Gives them a sense of ownership;
f) Helps them to take pride in something;
g) Gives credibility to the organization and the work everyone
does;
h) Gives [the PHA] a sense of positive and knowledge that they
are doing something good;
i) Provides hope;
j) It pushes PHA’s in a healthier direction in their recovery (from
addiction);
k) Leads to more volunteering and employment;
I) Reduces marginalization; and,
m) Better outcomes for both the PHA and the organization.

When I look at the above examples of the benefits of GIPA, I feel that the response
from the organization is accurate when it comes to generalizing. On the other hand, I
can definitely see how newer organizations are more hopeful and have not yet had a

72

whole lot of experience implementing the GIPA principles. When asked about the
challenges that Positive Living North W est faces when working with PHA’s they
stated that they are not currently working with any PHA’s in their organization. This is
not from lack of trying on their part.
Barriers to PHA involvement in AIDS service organizations:
a) Confidentiality;
b) Transportation and/or a lack of effective transportation;
c) Stigma;
d) Drug use;
e) Anonymity;
f) Conflict with inter-relationships;
g) Advocating;
h) Meeting people where they are at (what is comfortable for them); and,
i) Working around the members (PHA’s) schedule.
Talking about the challenges and barriers is an important part o f the process for
accommodating the needs of clients. The participants shared their struggles around
engaging with PHA’s who were able to be in a place to commit to wanting to engage
in GIPA. They felt that the capacity and skill level of people living with HIV/AIDS was
not an issue unless it refers to actual paid work. In regards to employing PHA’s, it is
their experience (from within their own
community) that PHA’s lack the skills
specific to a staffed position, as often it
requires specific academic education. They
work with the strengths of the PHA and
accommodate for volunteer positions. The

When I look at this building
(Positive Living North) I see...’’a
place where people can come and
access whatever services they
need. Whether it be a cup of
coffee or a support meeting. I see
a place where someone who is
living with HIV does not have to
hide it or be ashamed of it. They
can take the knowledge that they
have gained and share it so
somebody else knows how to
protect themselves against HIV".

assistance that organizations need in order
Focus group participant, 2012
to implement GIPA is housing, access to

73

telephones, dedicated paid staff, increased funding, and addiction supports.

Prince George. British Columbia

rosrmc i/vp*; Norm;
Nokhcyofat'aih’enfsehen*S o a e ty

© Christal Capostinsky, 2013

WHAT ARE OUR SERVICES?
Education sessions (schools,
corrections, detox, community
organizations)
Provide information
Referrals
Visit outlying communities (Port
Simpson-Fort Nelson-Dawson
Creek-Williams Lake)
Outreach
Fundraising
Advocacy
Meals
Food program
Nutritional information
Hampers
Member support meetings
Hospital visits
Medical appointments
Outings
AIDS Walk

(Positive Living North, 2012)

© Christal Capostinsky, 2013
Prince George, also known as the northern capital of British Columbia, has a
population of approximately 76,000 people (City o f Prince George, 2011). It is
situated at the junction of the Fraser and Nechako rivers. Founded in 1807 and
incorporated as a town in 1915, the land area of Prince George is 318.26 square
kilometers (Wikipedia, Prince George, 2013). The city sits at an elevation of 575
meters (2013). The economic landscape is based on the service industry, education,
forestry, mining, prospecting, transportation and government (2013).

74

Focus Group Demographical Questions
The focus group took place at Positive Living North in Prince George BC. There
was eight staff participating.

Seven participants identified Prince George as a

northern community. One participant considered Prince George to be both rural and
northern. According to the participants, Positive Living North West provides services
to eighty-nine HIV positive people living in Prince
George. Of the eighty-nine PHA’s accessing services,
approximately 80% of them are Aboriginal and 15% are
Caucasian. Five percent come from other populations.
The split between women and men is approximately
50% with one person identifying as transgendered.
About 97% of the PHA's accessing services identify as
heterosexual, leaving three people who identify as
homosexual (gay men or men who have sex with men
(MSM). Approximately 85 of the 89 PHA's are active

“The power of presentations
with someone living with HIV
is beyond words"
"There is a great amount of
wisdom in the collective”
“It {working together} does
not come from a position of
power... it comes from a
position of equality”
“ I wouldn’t know about HIV if
it wasn’t for the people
working here and the people
living with HIV”
“It gives members a chance
to be a part of the solution,
to give back”

drug users.

[staff member] become
better educated”

Qualitative Questions

Focus group participants,
2012

Similar to Smithers, when I first asked about the
participants being aware of the GIPA principle, seven out of eight participants stated
that they were not aware of it. I expect that some of this influence was in part due to
the two focus groups being held together. However, once we started discussing GIPA
in greater detail, it was obvious to me that they had a good understanding of the
principle. The participants narrowed down their understanding of GIPA by concluding

75

that GIPA was “people living with HIV/AIDS having involvement with what the
organization is moving forward with. Their voice being heard” (Prince George focus
group, personal communication, September 18, 2012).
I should note that Positive Living North has two program locations in Prince
George. One being their main location, and the other being a cultural drop-in centre
where the primary focus is addressing the root causes of the HIV epidemic. The
majority of the participants stated that the organization implements GIPA in the
following ways:
a)
b)
c)
d)
e)
f)
g)

Frontline warriors (PHA’s involved in the education program);
Board of Directors;
Help with food hampers;
Volunteering;
PHA feedback on programming;
Peer Support Worker; and,
Sharing circles that incorporate culture.

The importance and benefits of involving people living with HIV/AIDS:
a)
b)
c)
d)
e)
f)
g)
h)
i)
j)

Promotes learning;
It gives the PHA’s an opportunity to contribute and be involved in
something;
It helps an agency set priorities;
Allocates the best way to spend money;
To inform youth;
To help avoid a new infection by sharing;
“It gives members a chance to be a part of the solution, to give
back.” (focus group participant, 2012);
Encourages other PHA’s;
Alleviates stigma; and,
Increases self-esteem.

76

Barriers to PHA involvement in AIDS service organizations:
a) Addictions
b) Mental health
c) Anger (personal state they are in in their lives on a daily basis)
d) Health (physical limitations for PHA’s)
e) Funding
f) Poverty
g) Self-imposed stigmas
h) Oppression/repression
i) Education
j) Living in a northern community
k) They can’t remove themselves from HIV when they work in an
HIV organization

Challenges of working with people living with HIV/AIDS:
a) “They don’t feel like I am one of them” (focus group participant,
2012)
b) Lack of school education
c) Working with the skills they [PHA’s] have
d) “As a staff I feel that I can’t please everyone” (focus group
participant, 2012)
e) Miscommunications
f) Assumptions
g) Accommodating health needs
h) Poverty
i) Being a non-aboriginal staff when majority of clients are
aboriginal
j) Staff turn-over
k) Methadone [clients who are taking this as a prescribed
medication]
I) Medical needs
m) Lack of driver’s license and vehicle

There was discussion around solutions to the challenges and barriers. Most of
the participants agreed that a starting point was talking about it and having further
discussion. The participants felt that they promoted GIPA the best that they were

77

able to. They try to provide opportunities for PHA involvement whenever and
wherever they can. Most of the barriers come from outside systems that they are
unable to change. Some of these barriers include poverty, addiction, funding, stigma
and health.
The participants at Positive Living North in Prince George felt that the capacity
and skill level of people living with HIV/AIDS was an issue but that the organization
had a responsibility to work around the available skills and capacities of the clients. .
Participants agreed that it is the systemic barriers that create the most challenges
around implementing GIPA. The assistance that organizations need is increased
funding and more staff to train PHA’s in skill development (including basic life skills).
A Study Analysis
Using a thematic approach, I have provided an analysis of the similarities and
differences between all four communities. The analysis includes data gathered
through the qualitative process. The findings are as follows:
Importance of GIPA

All of the communities acknowledged the importance of the GIPA principle. Not
all communities actively use GIPA. This is mostly due to reasons beyond their
control. They find it difficult to engage with PHA’s who may not be in a place to be
actively involved in an agency. They base the importance of GIPA for many reasons;
however, the reasons more frequently noted were:
1. It provided an opportunity for PHA’s to be invested in their community.
2. It facilitates meaningful involvement between the PHA and the community.

78

3. It gives PHA’s a sense of responsibility in implementing services that are
relevant to them and their needs.
4. Allows for an opportunity for PHA’s to show their skills and/or obtain new skills.
Benefits to PHA Involvement

There are many benefits to involving PHA’s in local AIDS service organizations.
Though some of the organizations do not currently use GIPA and others struggle with
implementing it, they did have a clear understanding of the benefits of GIPA. The
themes that stood out the most were:
1. Peer mentoring.
2. Skills/Capacity building
3. Gives value and credibility to the organization and what they provide to the
community.
Challenges in working with PHA’s
While GIPA appears to be an invaluable concept, it is not without challenges.
Many of the challenges were similar in nature. One organization was not even able
to answer this question due to their lack of GIPA implementation. The challenges
that were more commonly noted include:
1. The lack of skills that PHA’s bring to the agency.
2. Continuous drug and alcohol issues that prevent PHA involvement.
3. Lack of confidentiality and anonymity.
4. The agency needing to accommodate any health needs that the PHA’s may
have.

79

Barriers to PHA Involvement
Often, PHA’s want to become involved in agencies; however, so many things prevent
them from doing this. There were several barriers that participants noted during the
focus groups. These barriers include:
1. Stigma and discrimination
2. Lack of anonymity
3. Transportation
4. Working around the schedules of potential PHA’s who are interested in being
involved.
Skills and Capacities
The skills and capacity level of clients was an issue that the organizations could
not address without more support from government. On one hand the agencies felt
that their staff was not able to assist in training due to unavailable staff and/or lack of
monetary support to provide this. On the other hand they felt that it was their
responsibility to work within the skill level that clients presented.
Assistance needed
In light of the assessment of the skills and capacity of both the clients as well as
the organizations, the agencies felt that they needed three things in order to
implement GIPA.
. 1. Supportive government
2. Increased funding opportunities
3. A way to share the experiences of GIPA among other rural and/or northern
Canadian communities.

Finally we come to the conclusion. The following pages will summarize what we
have already covered in this document. From learning about HIV and its’ early
beginning to the GIPA principle created by forty-two countries in 1994. It provides an
overview of GIPA implementation in the northern context and how the social
determinants of health play a key role in HIV/AIDS. Finally it will look at how my
research was beneficial to western Canada and how it can be used to complement
existing services in AIDS service organizations. All of this from my own voice; my
own perspective.

81

CHAPTER SIX

Conclusion
This research project was something that I was very invested in. It may be
finished in the sense of a written document, but it is far from being finished in its use.
My passion and commitment are written in these pages. AIDS has been a heated
enigma for the last thirty plus years in Northern America and it does not seem to be
lessening any. What continues to give me hope is the ongoing research that tells us
just how close they may be to finding a cure. I have to believe in this. It gives me a
thread of hope to hang onto throughout the misery and death that surrounds this
disease.
What has made this disease so unique is the AIDS movement tied to it. So many
people have given their lives to advocating for millions of people around the world.
GIPA was initially addressed as a way to empower people in a movement that holds
so much purpose and meaning. W e are a group of millions of people with so many
skills and abilities. It would seem natural that we would be the ones to find the light
within the shadows. If only people would understand the role that GIPA holds within
our world today and just how important it is to the lives of so many.
We are all impacted in different ways; some of us through race, some of us
through gender, and others through class. The effects may differ but the disease
affects us all the same. Some of our bodies are stronger than others, but there is still
no escape from the sickness that continues to ravish our existence. Some of us
come from northern communities, while others dwell in the warmer southern climates.
Some of us live in more isolated communities where services are non-existent. W hile

82

others live in metropolitan areas erupting with services. This is something that needs
to change, but it will not if left in the hands of the government. We can only lay blame
for so long before we ourselves begin to lend credence to the issues at hand that
need to be addressed.
This is where the journey ends. Well, at least this part o f it. I am amazed at the
power of the written word and how it can transcend into something that has so much
meaning. Using autoethnography gave me the opportunity to share with people a part
of my life that does not get much notice. Living with HIV/AIDS is not something that I
tend to shout to the rooftops. Through this medium I was able to educate and share
information about a disease that has ravaged the world as well as my life. It was
inspiring to be able to use Chang as an educational guide to share my experiences
using autoethnography. Her insight on ethnography as a research method allowed
me access to a tool that created a meaning narrative for my knowledge and shared
experiences.
HIV/AIDS has been in the spotlight for more than three decades. It is a disease
that has ravaged communities and decimated populations. What makes HIV/AIDS
so different than other diseases? HIV/AIDS is just one of the many diseases that
exist in our world today. Like any other, it is mediated by social determinants of
health and mitigated by proper diagnosis and clinical care. As such, it deserves
equitable allocation of resources, sympathy and concern that other diseases garner
from the society at large.
It is in the hands of the service providers to encourage people living with
HIV/AIDS to be invested in providing services. Though one of key components in

83

doing this relies on monetary support from governments, this can no longer be used
as a reason to delay the involvement of positive persons. There are many other
ways to solicit funding. I encourage organizations to look to other sources because
increased involvement means bettering the lives o f many PHA’s.
The truth is that there is so much fear attached to this enigma and society still will
not accept that there is no shame in living with this disease. The shame comes from
the ignorance that we, as a nation, are responsible for. There is no difference
between cancers, Parkinson’s disease, Multiple Sclerosis, heart disease, diabetes
and HIV/AIDS. What will it take for society to see this?
While this disease does not discriminate, it still affects populations in different
ways. Gay men are still the predominantly affected group; however, women, youth
and Aboriginal peoples are close behind. The rates of infection among Aboriginal
peoples have been compared to the rates of infection in some African countries. This
is because of the unequal ratio of Aboriginal people to non-aboriginal people in
Canada. Aboriginal people only make up 3.8% of the Canadian population, so when
HIV runs rampant in their communities, it becomes a national concern and the
responsibility of the government to address.
GIPA, the Greater Involvement of People living with HIV/AIDS, is a principle that
has been endorsed though the United Nations. It seeks to empower not only PHA’s
but the organizations that work with them. When used correctly it exudes meaning
for all parties involved. One thing that I have learned over the years is that there is
nothing more powerful than the shared stories of those with lived experience.

84

Through studies done globally people have been able to look at the benefits and
challenges of implementing this phenomenon in the work that they do both locally
and internationally all around the globe. The next steps include appealing to
government for assistance in carrying out this much needed principle. The work has
already started through government acknowledgement in regards to the social
determinants of health. We need to take it one step further and demand adequate
supports in order to carry out the concept of GIPA within
our local organizations. Poverty, addiction, funding,
stigma and health continue to be barriers for meaningful
involvement of people living with HIV/AIDS. To change
this requires action from all invested participants.

Each time a man stands up
for an ideal or acts to
improve the lot of others, or
strikes out against injustice,
he sends forth a tiny ripple o f
hope, and crossing each

We are in a global crisis right now and have been for
years in regards to the AIDS epidemic. It is a proven fact

other from a million different
centers of energy and
daring, those ripples build a

that prevention is the answer for not only reducing
infections but for long term cost saving when it comes to

current that can sweep down
the mightiest walls of
oppression and resistance.

supporting people living with HIV/AIDS. It is about time

Robert F. Kennedy

that the government acknowledges this and accepts the
wisdom of the people who have been working frontline for decades. W e need to
build a stronger, more inclusive movement for and by the people living with HIV.
There are so many people out there living with HIV/AIDS who can offer great things
to this movement, but they are not given the opportunity to do so. It is time for
change. The lives of millions of people are dependent on this. This means that we

85

need to take the steps first because if we wait for government, we will be waiting for a
long time.
I am proud of the research that I have accomplished. It can be a guide to help so
many people expand on services for PHA’s. It can also be a point of contact for
those looking at comparing GIPA in Eastern Canada. My goal is to share this
document with people across the nation so that they can use it to benefit people
living with HIV/AIDS. It is so important for AIDS service organizations to implement
the GIPA principle. This research tells us that it is not used to its full potential. Social
work is a very important part of the work that we do with society. It is a profession
with no bounds. We work with people from all walks of life and take on issues that
create segregation, oppression and inequality. This project was a blessing to be
involved in and I feel honoured to have met so many wonderful people that care so
much about the clients they work with. I can only hope that this was a helpful step in
the right direction for those living with HIV/AIDS and the organizations that they
consider home.

86

This picture is that of a painting that my thesis supervisor, Dr. Si Transken, presented
me with after attending one of her classes to discuss my research. She is not only a
professor, but a creative artist and activist. She has been an inspiration to me
throughout my educational journey and I look forward to learning more from her in the
years ahead.

87

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88

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APPENDIX A
Focus Group Research Questions

Demographics:
1. Which community do you identify with: northern, rural or both?
2. Approximately how many PHA’s does your organization provide service for in
your community?
3. How many of these people represent the Aboriginal population, Caucasian
population and other ethnicities?
4. Approximately how many identify as women, rrien and transgendered?
5. What is the main population that accesses your organization: homosexual or
heterosexual?
6. What percentage would you say identify as active drug users?

GIPA context:
7. Are you aware of the principle known as the Greater Involvement of People
with HIV/AIDS (GIPA)? If so, what is your understanding of this principle?
8. Does your organization implement GIPA? If yes, how is GIPA implemented?
9. In your opinion, is it important to involve people with HIV/AIDS in your
organization? If yes, why is it important?
10. In your opinion, are there benefits to involving people with HIV/AIDS in the
HIV/AIDS in your organization? Please tell me what you think these benefits
are?
11 .What is it that you do within your organization? Please describe your
experience of working with PLHAs in your organization.
12. Are there challenges for you in working with PLHAs in your organization? If
yes, please describe what these challenges are and how you think they can be
overcome? (Facilitator to note that this question is in regards to working with
other PHA’s involved in the organization)

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13. Please describe what you consider to be the major barriers to involving people
with HIV/AIDS in your organization. How do you think these barriers can be
overcome?
14. (Facilitator to note that this question is about barriers involving people to
participate in the organization)
15. How does capacity and skill level on the part of people with HIV/AIDS and
PLHA organizations affect their ability to become involved in your
organization?
i. For example, do you think that PLHAs have the necessary skills
and capacities to take part in the different areas within your
organization?
ii. If not, please can you describe what skills and capacities you
consider PLHAs need to participate effectively?
16. What kind of assistance (for example technical advice or training) do you think
service providers at AIDS service organizations, or other related service
organizations, need in order to help promote and implement GIPA? Please list
as many examples as you can.

Other:
1. What do you consider to be the highlight of your job? Please feel free to share
a memorable moment you have had in regards to your work with HIV positive
people.
2. Is there anything you would like to add on the involvement of PLHAs in service
organizations, or about other issues that you feel are important?

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APPENDIX B
Informed Consent to Participate in Research
Project title: Beyond the Horizon: The Implementation of GIPA in Northern
Communities from the Perspective of Service Providers
Purpose & Goals: The objective of this research is to assess the involvement of
people living with HIV/AIDS within service organizations in northern and rural
communities across Canada. It will look at the barriers that people living with
HIV/AIDS face in regards to their involvement, as well as how to address them within
the global context of the definition of the GIPA (Greater Involvement of People Living
with HIV/AIDS) principle. The project will help to assist not-for-profit organizations
nationally to implement better practice around GIPA in their communities. It will be a
way to facilitate meaningful dialogue around this issue with many participants across
Canada.
All participants were pre-determined by the researcher based on geographical
location and the target population to whom you provide services. All participants are
service providers in northern/rural AIDS service organizations. No disclosure around
HIV status is necessary or will be sought. Technology used in this research includes
on-line surveys, computers, flash drives, tape recorders and written documents.
Participants will be asked to participate in a focus group at their AIDS service
organization (place of work). The duration of the focus group will be 2 hours
maximum. Ten questions will be asked during this time. The focus groups will be
tape-recorded but no one else besides the researcher will be privy to access them.
The researcher will be undertaking transcription of all tapes. Your anonymity is
important to the researcher. Every participant will be given a number to replace their
names in the transcription. The tapes will be permanently and physically destroyed
by burning once transcribed. Transcriptions may be kept for future research;
however, as previously mentioned, no names or locations will be identifiable. In
stating this, you, the participant agree to the future use of this data in any further
relevant studies that may include publications. These publications may include
planning documents, academic articles for publishing, comparative analysis
documents including other studies.
Your confidentiality is important and will be respected. No names or identifying
information will be included in the research; however, your anonymity cannot be
guaranteed. As the researcher, I cannot guarantee or control what other focus group
participants do with the information they gather. As mentioned previously, all tapes
will be permanently and physically destroyed by burning once transcribed.
After transcriptions are complete they will be forwarded to all participants for review
to make necessary corrections or to add additional information. A final copy of the

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research will be made available to you after it is completed. This information will be
disseminated nationally and be made available globally.
Potential benefits to the study include:
•
•
•

Gain a better understanding of the strengths and limitations of GIPA in
organizations
Increasing the capacity for GIPA in organizations; and,
Local organization’s voices heard in a broader national context

There are no known risks attached to this study, though this can be discussed in
deeper context during the focus group if needed.
Your participation is voluntary and you have the right to withdraw at any time during
the research process without repercussion. If this happens, all of your information will
be withdrawn from the research.
If you have any questions, please do not hesitate to contact the researcher, Christal
Capostinsky, at 250-612-2351 or caposti@unbc.ca
Copies of the final research results will be made available to you after completion. If
you do not receive a copy, please contact the researcher. Any complaints about this
project should be directed to the Office of Research at the University of Northern
British Columbia reb@unbc.ca or 250-960-6735
I , ________________________________________, give my voluntary consent to
participate in this project. I have read the above informed consent information in
regards to the project and fully understand the nature of my consent to participate. If I
have any questions, I will address them to the appropriate contacts listed in this
agreement. I am aware that I can withdraw my consent at any time without
repercussion, and that all my information will be struck from the research.

Participant

Date

Witness (another participant)

Date

Researcher (Christal Capostinsky)

Date