"PEOPLE NEED TO LISTEN TO US": EMPOWERING PEOPLE LIVING WITH
HIV/AIDS THROUGH POSITIVE PREVENTION

by
Jiwon Slotwinski
B.Sc, Kyungsan University, 1994

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

THE UNIVERSITY OF NORTHERN BRITISH COLUMBIA
April 2011

© Jiwon Slotwinski, 2011

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Abstract
This thesis research will explore the meanings and experiences of people living with HIV
who participate in Positive Prevention (PP), a health promotion and harm reduction program
designed to help participants to engage in acquisition of useful knowledge to improve their
own capacity to manage HlV-related illness and to adhere to treatment, as well as to enhance
community capacity to provide psychosocial support. Participatory Action Research was
undertaken in collaboration with research partners at Positive Living North, an AIDS service
organization in Prince George, British Columbia. The objective was to hear from people
living with HIV and their support providers about how effectively PP meets their needs.
Providing people living with HIV a voice will improve our understanding of how ideas of
preventive activities are actually received, and whether, and in what ways, quality of life has
been improved.

11

Table of Contents
Abstract

11

Table of Contents

in

Acknowledgements

v

Introduction

1

Chapter One

Chapter Two

Study Context:
Most Recent Trends HIV Statistics among Aboriginal Canadians:
Trends in HIV among Aboriginal Peoples by Age and Gender
HIV Prevalence in British Columbia
HIV Positive Tests among Aboriginal Peoples in Northern BC
How PP Responds to the Needs of People Living with HIV
Engaging in a Process of Decolonization & Healing at Street Level
Positive Living North (PLN), No kheyoh t'sih'en t'sehena Society

3
4
5
6
8
9
10

Literature Review:
Barriers to HIV Treatment:
Stigma and Discrimination
Co-Infection
Continuous Substance Abuse
Inadequate Living Conditions
Poor Quality of Healthcare
Lack of Empowerment
Debates about Harm Reduction

14
14
16
18
20
22
26
27

Chapter Three Methodology:
Qualitative Methodology: Participatory Action Research
Procedure
Data Sources and Analysis Plan
Ethical Considerations
Research Limitations
Chapter Four

34
36
40
42
46

Results:
Experiences of the Positive Living North Staff
Experiences of Positive Living North Members
Staff and Participant Support for Harm Reduction Approaches

49
55
65

Chapter Five

Discussion

68

Chapter Six

Conclusion

73

in

Endnotes

77

References

80

Appendix A

Triangulation of Research, Harm Reduction and Disease Prevention

90

Appendix B

UNBC Research Ethics Board Approval

91

Appendix C

Interview Guide

92

Appendix D

Interview Questions for PLN Employees

96

Appendix E

Confidentiality and Privacy - Positive Prevention Project

97

Appendix F

Member Services Code of Conduct

98

Appendix G

Informed Consent

99

Appendix H

Information on Research Project

100

IV

Acknowledgements
First of all, I would like to express gratitude to the people of Positive Living North
(PLN) who participated in this research. Thank you for sharing your stories, your time, and
your lived experiences with me. I appreciate from my heart that you tried to
understand/consider my English that is not a mother tongue; and you have let me feel a sense
of belonging.
I am always indebted to the Positive Prevention participants, PLN Client Services
manager Mr. Steve Lorenz, and Positive Prevention program facilitator Dr. Theresa Healy
who assisted me throughout my field work and beyond.
Thank you also to an administrative assistant of Health Sciences programs Irma Watt
who believed in, introduced the PLN, and supported this project from the beginning. Also,
Mary Bertulli Library assistant and Gloria Benazic in Awards & Financial Aid, your supports
have been invaluable to the development of this thesis.
I have my sincere appreciation and gratitude to my supervisor, Dr. Neil Hanlon, who
guided me where my thesis was heading and kept me on track throughout the process. Thank
you for being patient and thorough with your feedback and giving me such warm
encouragement.
Thank you to my dearest committee members, Dr. Theresa Healy and Dr. Peter
MacMillan. You (including my supervisor) always showed interest in what I was doing and
listened to my endless concerns. You were so giving of your time, dedication, and hard work,
which has been an inspiration to me.
Thank you also to my external examiner, Dr. Glen Schmidt for your honest and
detailed comments and suggestions. I would like to express thanks to especially Dr. Josee

v

Lavoie, Sam, Orlando, Jessica, Derek, Alexandra, Leana, Gloria, and Catherine for showing
your genuine interests, remarks, and ideas.
Finally, I would like to thank my wonderful families: my hubby Zbigniew and his mom
Aniela; my mom, my dad, and my two brothers and their families. Thank you for believing
in me when I have struggled to believe in myself; and your constant financial/mental
support—your love, understanding, and encouragement—have made all of this possible.
Financial support for this project was granted by the University of Northern British
Columbia (UNBC) 2008 Spring-Summer Research Project Award and the UNBC 2009
Health Research Project Award; also, the study was supported by a grant from the Sun Life
Financial Rural and Remote Health Research Award the Anne Fergus McKay Groundwater
& Muriel Ross Groundwater Bursary, Northern BC Graduate Society Legacy Scholarship,
and the Yvette and Dollard Bock Health Research Award. This thesis is dedicated for my
grandma, who passed away on the 17th of May, 2010.
Mussi Cho (thank you).

VI

INTRODUCTION
The origins of HIV remain uncertain. This has been a major barrier to finding either a
cure or a vaccine for this disease. However, the introduction of antiretroviral drugs (ARV)
treatment has brought new hope to many people living with HIV. If only one ARV drug is
used, it is easy for the virus to develop resistance. For this reason, using a triple-drug
combination is regarded as Highly Active Antiretroviral Therapy (HAART). HAART has
substantially reduced HIV/AIDS associated morbidity and mortality. Ideally, this leads more
people to become conscious of their HIV status and seek access to HIV treatment so as to
reduce overall risks of transmission (Chee Mamuk, 2008). Therefore, the actual number
living with the HIV infection is increasing globally each year because of the accumulation of
new infections in people with longer survival times in a continuously growing general world
population (Pratt, 2008).
To date, most HIV prevention approaches have been directed towards people who are
not infected with HIV, or who do not know their status. There are at least two very good
reasons, however, to target those who are HIV positive and aware of this status. The first is
to prevent the spread of HIV by providing those people with information about how HIV is
passed on and how to protect others from becoming infected with the virus. The second is to
reduce stigma and discrimination, which enables the spread of HIV by discouraging people
from seeking testing and treatment.
To focus on capacity building efforts in northern B.C., the Positive Prevention (PP)
program was designed to engage people living with HIV in acquiring knowledge and
building skills at the individual and community level. A primary purpose of this paper is to
describe and evaluate the implementation of the program at Positive Living North (PLN), No

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kheyoh t'sih 'en t'sehena Society, an HIV/AIDS service organization in Prince George, B.C.
which works with people living with HIV.
There are major challenges in reaching and working with those living with HIV. First,
most people living with HIV have a deep mistrust and fear of authority figures and
institutions. Second, according to the Canadian Public Health Association (2006), many
people with HIV lack confidence in their ability to manage their health and the complex
demands of treatment regimens. The reasons for this lack of confidence are that many of
these individuals are poor, have drug addictions, experience mental illness, face uncertain
and dangerous prospects because there is currently no cure for HIV infection, and experience
stigma and discrimination due to their HIV positive status (Healy & Dingwall, 2007).
This thesis will explore the meanings and experiences of a health promotion and harm
reduction program for people living with HIV, and learn from participants of the program in
order to better inform health policy, research, and practice. My thesis will employ a
participatory action research (PAR) approach to work with people with HIV and their
support providers to understand better how ideas of health promotion, education, and
preventive activities are actually received. My objectives are to understand and assess the
PAR approach favoured by PLN, and to give voice to PLN participants so as to understand
whether, and in what ways, Positive Prevention responds to the needs of people living with
HIV. This research may help participants engage in building useful knowledge that
improves their own capacity to appropriately manage HIV related illness and their
community capacity to ensure psychosocial support and adhere enhanced capacity to
treatment.

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~ Chapter 1 ~
STUDY CONTEXT
Most Recent Trends HIV Statistics among Aboriginal Canadians
While rates of HIV transmission overall have dropped, the rates for Aboriginal groups
in Canada appear to be rising. The Public Health Agency of Canada [PHAC] (2007) reports
a steady rise in the proportion of positive HIV test reports among Aboriginal peoples in
Canada between 1998 and 2006. There were 6,253 positive HIV tests reported to the Centre
for Infectious Disease Prevention and Control that contained information on ethnicity. From
this sample, there were 1,458 (23.3%) positive test reports from Aboriginal peoples. The
proportion of positive HIV test reports attributed to Aboriginal peoples rose from 19% in
1998 to 27.3% in 2006 (see Figure 1).
Figure 1. The proportion of positive HIV test reports attributed to Aboriginal Canadians.

1996

2002

2006

• The proportion of positive HIV test reports attributed to Aboriginal peoples

Source: Public Health Agency of Canada [PHAC] (2007). HIV/AIDS Epi Updates
(November), p. 57.
Injection Drug Use (IDU) persists as the most common route of HIV transmission in
Aboriginal Communities. The incidence rate of HIV infections in 2005 attributed to IDU was

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much higher for Aboriginals (53%) than among all other Canadians (14%) (PHAC, 2007).
Aboriginal peoples who inject drugs experience a significantly elevated burden of HIV
infection. Moreover, conditions of social disadvantage leave many Aboriginal persons
particularly susceptible to the infection of HIV (Wood et al., 2008).
Although Aboriginal Canadians are entitled to the same standard of health and delivery
of health services as all other Canadians (Boyer, 2004 b), the health status of Aboriginal
peoples remains well below that of the non-Aboriginal population, particularly in regards to
life expectancy, infant mortality, and infectious disease rates (Adelson, 2005). Gaps in care
are especially evident for health promotion and illness prevention. In particular, there is a
paucity of research in Canada addressing the "relationship between antecedent sexual abuse
and negative health outcomes among Aboriginal peoples including elevated risk of HIV
infection" (Pearce et al., 2008, p. 2185).
Trends in HIV among Aboriginal Peoples by Age and Gender
Aboriginal persons with a diagnosis of HIV tend to be younger and are more likely to
be female than non-Aboriginal persons with HIV. Almost a third (32.4%) of the positive
HIV test reports from Aboriginal persons from 1998 to the end of 2006 were less than 30
years of age, compared with 21.0% of this age among infected non-Aboriginal persons
(PHAC, 2007, p. 62). According to Emma Palmantier, chairwoman for the northern BC
Aboriginal HIV/AIDS Task Force, these facts are particularly important in light of the
younger demographic profile of First Nations populations (Trick, 2008).
According to PHAC (2007), during 1998-2006, women represented 48.1% of all
positive HIV test reports among Aboriginal persons as compared with 20.7% of reports
among non-Aboriginal persons. Mehrabadia et al. (2008) also state that Canadian Aboriginal

.4-

women and youth continue to be overrepresented amongst new cases of HIV and are
considered at increased risk for sex and drug-related harm. The authors assert that the
relationship between childhood sexual abuse and sex work participation may be intensified
by cocaine and other injection drug use. Cocaine use has been found to amplify women's
susceptibility in survival sex work situations, which leads to increased risk for parenteral
HIV transmission.
HIV Prevalence in British Columbia
While Aboriginal people make up less than 4% of the province's population, they
accounted for almost 15% of the HIV infections reported between 1995 and 2001, and
almost 16% in 2001. The situation has been exacerbated considerably since 1995, when only
10.2% of the newly reported infections occurred among Aboriginal peoples. The mortality
rate for Status Indians HIV/AIDS is much higher than for other residents in 1990-2000 (B.C.
Ministry of Health Planning B.C. & Ministry of Health Services, 2003). According to
HIV/AIDS Update: Annual 2006, the total number of individuals with new positive HIV tests
in BC in 2006 was 360, which is lower than both 2004 (441) and 2005 (401). This decline
may be interpreted as evidence that HIV transmission rates are decreasing (Haag et al.,
2007).
If one adds individuals (360) with new positive HIV tests in BC and individuals (57)
with previously positive HIV tests outside of BC, however, the total number of reported first
positive HIV tests in BC in 2006 increases from 360 to 417. Thus, the total of these two
numbers may be the best indicator of service needs of individuals with HIV, including the
need for treatment (Haag et al., 2007). While the provincial rates of HIV infection amongst

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Aboriginal persons are alarming, the situation is even more troubling for the Aboriginal
population of northern BC.
HIV Positive Tests among Aboriginal Peoples in Northern B.C.
A steady rise has been seen in the proportion of positive HIV test reports among
Aboriginal peoples in northern BC (B.C. Ministry of Health Planning & B.C. Ministry of
Health Services, 2003). According to the 2001 Census data in northern BC, 15.6% of the
population in northern BC is Aboriginal, the highest proportion in the province (Statistics
Canada, 2002). The Aboriginal population living in urban areas increased 11% from 2001 to
2006 (Milligan, 2010). For Aboriginal peoples from 1989 to 2001, the proportion of newly
reported HIV positive cases in the Northern Interior increased, while the proportion in the
Lower Mainland declined (B.C. Ministry of Health Planning & B.C. Ministry of Health
Services, 2003).
In northern BC, a high prevalence of Hepatitis C (HCV) is a portent of the HIV
epidemic, owing to risk factors of HCV such as needle borrowing and difficulty in accessing
uncontaminated needles. Injection cocaine use appears to be on the rise in northern BC, but
the users experienced the limited hours of operation of the fixed-syringe exchange program
and policies restricted to syringe-for-syringe exchange rather than distribution (Spittal, et al.,
2007).
There are a number of reasons offered for why the incidence rate of HIV is increasing
in northern BC. First, geographic and demographic features converge to create a shortage of
human resources, infrastructure, and supplies for all health issues of which HIV/AIDS is a
major concern. The Northern Health1 Authority covers over two-thirds of the land mass of
the province of British Columbia. Within this large territory, however, there are just eight

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communities with populations over 10,000 people, and more than 60 smaller, predominantly
First Nations communities, many of which are very remote. Many First Nations in the
northwest and northeast of the province have indicated that they need first level health care
and more harm reduction services in order to cope with increasing rates of HIV/AIDS and
Hepatitis C in Prince George (Northern Health, 2007). Northern Health faces challenges on
access to specific services and facilities offering appropriate levels of care; for example,
health authority workers in Prince George state that in-patients with HIV disease demand
increasingly multifaceted care and are developing statuses related with advanced, untreated
HIV disease such as pneumonia and AIDS-related dementia (B.C. Ministry of Health of
Health Services, 2003). Services such as a wellness van offer people a mobile harm
reduction service and health care outside of the hours of Northern Health's Downtown
Health Centre and AIDS Prevention Program (Northern Health, 2007). In spite of these and
other efforts, however, geographic remoteness and sparse populations are major barriers to
service provision in the study area.
A second factor is the impact of the high degree of spatial mobility exhibited by many
First Nations individuals in northern BC particularly amongst young adults (Spittal, et al.,
2007). Aboriginal people in general tend to travel and relocate frequently, move into cities,
and return to their remote home communities to facilitate medical and social needs, and
employment (Canadian Aboriginal AIDS Network, 2003, July). There is growing evidence
that high levels of mobility, and the dislocation from family and nation that this entails, play
a large role in explaining rising rates of HIV in Prince George. The Cedar Project, a
community based research initiative, discovered higher rates of HIV in the downtown

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eastside of Vancouver and higher rates of HCV Prince George among Aboriginal youth
injection drug users (Spittal et al., 2007).
Third, any consideration of current social conditions for First Nations in Canada must
include consideration of the cumulative and ongoing impacts of colonialism. The present
breakdown of family life and intergenerational relations for many First Nations households,
for instance, owes much to the forced removal of present day parents and grandparents to
residential schools. Likewise, high rates of removal of children by social services continue
to disrupt familial relations, contributing to higher rates of drug use and unsafe sex amongst
youth (Spittal, et al., 2007). Public health initiatives must recognize the effects of
colonization and the influence of health and social determinants on increased risk of
HrWHCV and provide culturally relevant prevention programs and services (Canadian
Aboriginal AIDS Network, 2003, July).
How Positive Prevention (PP) Responds to the Needs of People Living with HIV
According to the International HIV/AIDS Alliance (2007), Positive Prevention (PP)
aims to enhance the self-worth, self-assurance, and capabilities of HIV positive people; to
protect their own health; and to avoid transmitting the infection to others. HIV service
providers and researchers cannot claim that PP alone will improve the quality of life of
Aboriginal peoples2 living with HIV, owing to unstable housing, unemployment,
homelessness, sexual/physical abuses, and a concomitant lack of self-worth, poverty, and
racism.
Rather PP can promote resiliency among this vulnerable population, which makes
individuals more capable of coping and adapting to these issues. PP helps participants
improve access to a promising treatment and intervention. For example, many HIV positive

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people who use drugs find it more difficult to disclose their HIV status to sexual partners
than to injecting partners. Thus, prevention efforts aim to ensure that participants receive
support they need to deal with issues (International HIV/AIDS Alliance, 2007).
Engaging in a Process of Decolonization and Healing at Street Level
First Nations people are taking matters into their own hands to try and stem the
epidemic of HIV/AIDS disease sweeping through their communities (Trick, 2008).
Aboriginal trainees from 25 communities across northern BC spent one week in Prince
George being trained in how to reach and educate the people back home about the risks and
prevention of HIV/AIDS and other sexually transmitted infections. The trainees have been
equipped with the knowledge and tools of the Chee Mamuk Aboriginal program model
designed by the government's B.C. Centre for Disease Control (Chee Mamuk, 2008). Its
mission is to share information and build skills around the subject of HIV/AIDS, HCV, and
STD's, and to help participants explore their lives and lifestyles in a way that encourages
spiritual, mental, emotional, and physical health (Chee Mamuk, 2008).
One of the trainees, Ramona William, from Fort Babine said, "we need to let [those
suffering with sexually transmitted disease] know we'll be there to help and support them
instead of pushing them away" (Trick, 2008, p. 1). Four people from her community had
taken their own lives in that year. She reasoned that "there's nothing out there and nowhere
for them to turn." Trainee Vickie West said health care services on her Fort Babine Reserve
consist of a nurse visiting two days a month, whose time is mainly taken up caring for elders.
"We know we have one HIV positive person on the reserve, but we don't know how many
people have sexually transmitted diseases because all appointments have to be done in
Smithers, so most people don't get tested" (Trick, 2008, p.l).

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Positive Living North (PLN), No kheyoh t 'sih 'en t 'sehena Society
Aboriginal trainees from 25 communities across northern B.C. said that their
communities lack counselling, therapy, and workshops for training due to the remote or flyin geographic distribution and a small population (Trick, 2008). On the other hand, Prince
George has the Fire Pit Cultural centre, operated by PLN in partnership with the Central
Interior Native Health Society. The centre attempts to address determinants of health that are
homelessness, injection drug use, and alcohol abuse. These factors cause a huge toll on
Aboriginal people in Prince George. The centre also tries to prevent new infections of HIV
and HCV by helping at-risk Aboriginal people reconnect with their culture and understand
how the process of colonization has impacted their lives and risk for HIV (Canadian Public
Health Association, 2005).
While approximately 75% of its clients identify themselves as Aboriginal, PLN is also
open to those in need of services regardless of their ethnicity (Positive Living North, 2010).
PLN provides a confidential and safe place, and a peer support group in order to help people
cope with HIV (with former/ active IDUs) by sharing experiences, developing networks of
mutual support, and offering advocacy designed to improve services, highlight human rights
abuses, and participate in decision making. However, little research has looked at the
meanings and experiences of Aboriginal peoples in Canada who are living with HIV/AIDS.
In this spirit, engaging the Participatory Action Research (PAR) at PLN in Prince George has
allowed access to the meanings and experiences of marginalized people with HIV/AIDS
usually rendered invisible or silenced. The PLN's PP Project builds on the unique strengths
and assets of people living with HIV in northern BC. In this project, a research team and

-10-

members living with HIV/AIDS, who represent themselves as "warriors on the front line,"
are collaborating in a culturally sensitive and community-based HIV/AIDS awareness
intervention project, which provides effective responses that need to integrate healing as part
of an active decolonization process (Fire Pit, 2005).
The transition from a client to a PLN member and PP participant (i.e., Warrior) is
much more than mere semantics. The PAR approach is that of listening to, learning from,
and supporting those living with HIV/AIDS in profoundly different ways. Living with
HIV/AIDS often comes with very powerful social, cultural, and personal associations of
shame, stigma, and prejudice, all of which aid in the promotion of HIV infections. Yet, these
people have stories, experiences and a positive message. They are powerful messengers for
the prevention of HIV/AIDS; as one person living with HIV said, "[Non-HIV persons] need
to hear what it is like. It is not just another chronic disease like diabetes." As the PP
Warriors learn about methods and tools to share their experiences as educational initiatives,
they learn how to develop more effective HIV prevention messages, while supporting
improvements to their health and well-being. One PP Warrior said, "It ends here, with me, in
my body if I don't pass it on. We could stop this disease tomorrow if everyone with it knew
that." PP Warriors are full participants in action research projects, evaluation exercises, and
strategic planning. The Warriors are revealing a triangulation model of community based
research, harm reduction, and ongoing HIV prevention (refer to Appendix A, attached). In
this way, the PP program has developed and supported meaningful involvement of those
living with HIV in ongoing work to improve local understanding and implementation of
service.

- 11 -

The PP program intends to provide many benefits. Firstly, people who are struggling
with substance abuse issues, poverty, or discrimination, are respected and listened to by
others in similar circumstances, in order to enhance social and personal relationships. Street
people do not accept outsiders. "With all due respect, they aren't going to listen to you. You
are just another white girl from the university." Secondly, team members have a sense of
ownership and belonging in order to collaborate to find resolutions to social injustice issues:
some can even help advocate for others. "Every time I go there [hospital or clinic] they treat
me like crap. That shouldn't happen." Thirdly, the team has a strong passion for protecting
the younger generation. "I don't want to see them walking this path." Fourthly, people
living with HIV can be powerful contributors to HIV education by improving their
perceptions of overall health and well-being: "It means more coming from someone like
me." Finally, participants will experience some ownership of a social scientific process that
usually tends to exclude them; participants initially will demonstrate a high degree of
expectation of what this research could do for them.
A fundamental tenet of PAR is that research should include an action agenda for
reform that may change the lives of especially marginalized participants. Therefore, action
research is meant to provide a voice for these participants, raising their consciousness and
improving their lives. Hart (1992) says participation refers generally to the process of
sharing decisions which affect one's life and the life of the community in which one lives.
Participation is the essential right of citizenship. The belief behind such participation is
motivation; that is, that people can design and manage the goals of the PP project together if
they feel some sense of ownership in them.

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In summary, HIV affects Aboriginal Canadians disproportionately, which is a
significant health concern among Aboriginal peoples. Moreover, the proportion of positive
HIV test reports in northern BC is rising because of physical remoteness (i.e., geographic and
demographic features), jurisdictional and health care delivery challenges of serving people
who regularly move on and off reserve, and socio-economic challenges. This section
outlines what PLN and other non-profit providers in the region do in response to these
challenges, focusing on HIV harm reduction strategies, education, and prevention programs.
This thesis research will employ a PAR method to learn more about how the PP program
responds to the needs of people living with HIV/AIDS. The next chapter discusses the kinds
of barriers to the prevention of HIV transmission, and how harm reduction efforts aim to
overcome these barriers and help improve the lives of people with HIV/AIDS.

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~ Chapter 2 ~
LITERATURE REVIEW
Barriers to HIV Treatment
HIV is a progressive illness that leaves people vulnerable to opportunistic infections
and cancers. When the body can no longer fight infection, the resulting disease is known as
AIDS. On average, it takes more than 10 years for the disease to progress from HIV
infection to AIDS (Canadian HIV Vaccine Initiative, 2008). Therefore, HIV is a chronic
disease, but is different from other chronic diseases such as diabetes, cardiovascular disease,
and cancer. This literature review is organized around factors that make HIV unique,
including social conditions related to stigma and discrimination, co-infection, continuous
substance abuse, inadequate living conditions, poor quality of healthcare, lack of
empowerment, and debates about harm reduction.
Stigma and Discrimination
Stigma implies prejudice and discrimination towards people living with HIV/AIDS.
This stigma causes a barrier to public action and on a personal level can reduce an
individual's willingness to practice prevention, disclose his or her HIV status to others,
access HIV testing, begin and adhere to treatment, and ask for (or give) care and support.
There is stigma related to HIV/AIDS because it is a life threatening and communicable
disease, it is associated with outlawed behaviours such as drug addiction and prostitution,
there are many misconceptions about how HIV is transmitted, and because of ongoing limits
to public policy responsiveness to issues of sexuality and sexual expression (Zaccagnini,
2009). For these reasons, health promotion and harm reduction programs have a "history of
profound burdens" (Trussler & Marchand, 1997, p. xxiv), many of which persist to the
present day.

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The Northern Aboriginal HIV/Aids Task Force (2003) suggests that Aboriginal
peoples across the North are aware that the HIV/HCV infection rates have been climbing
overtime and that the current HIV/HCV epidemics cannot be left unchecked. The Task
Force goes further to suggest that insufficient attention to these epidemics is a violation of
human rights and a "form of genocide" (p. 9). Stigma and discrimination will continue to be
fuelled by the awareness that HIV infection, left untreated, is a death sentence. Therefore,
Aboriginal peoples who test positive for HIV infection often do not access or seek out the
available services, but prefer to stay undetectable, unvoiced, and unidentified. One person
who has experienced such racism during his life suggested that it is favourable for Canada
that Aboriginal peoples' rage has been internalized because it effectuates an elevated extent
of self-destructive behaviour, rather than externalized acts of violence (Matiation, 1999).
The systemic and individualized discrimination experienced by Aboriginal people living with
or affected by HIV/AIDS contributes to the disproportionate impact of HIV/AIDS on
Aboriginal communities.
According to the Canadian HIV/AIDS Legal Network and the Canadian Aboriginal
AIDS Network (1999), two provisions under the Indian Act are of concern to people living
with or affected by HIV/AIDS. Section 81 (provision A) covers the health of residents on the
reserve and prevention of the spread of contagious and infectious diseases. Section 81 also
indicates the residence of band members and other persons on the reserve, which may be
proposed for the interests of the community. The interpretation of this provision can be
discriminatory because it shows that community interest is often misinterpreted based on
misunderstandings about HIV/AIDS. Namely, the reserve community can be biased on
homecoming people living with HIV and ignore their rights and interests in order to maintain

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community interest. A band may argue that a restrictive by-law regarding HIV is acceptable
on community health grounds and on limited resources that make it impossible to provide for
First Nations people living with HIV/AIDS on reserves. Nevertheless, rejecting people
living with HIV/AIDS does not stop the spread of HIV. Misunderstandings and denial about
HIV/AIDS are often reinforced by other forms of discrimination, such as discrimination
against two-spirited people (two-spirit is preferred because it is more culturally relevant to
Aboriginal gay, lesbian, bisexual, and transgendered people), women, and drug users
(Matiation, 1999). Chiefs' councils and elders from small communities may view
HIV/AIDS as "[W]hite people diseases" (Kelm, 1998, p. 154) like tuberculosis and
smallpox. Aboriginal communities deny and repudiate identities and accommodation of their
members with HIV rather than embracing them in the net of community care. Furthermore,
health policies that discourage efforts at education, prevention, and healing are not in the best
interests of communities, as they tend to force people concerned about their security to hide
their health status and avoid helpful treatment, counselling, and other support services.
Therefore, band leaders need to be educated about HIV and appreciate that it needs to be a
priority in Aboriginal communities. Chief Wayne Christian from the Splats'in/Secwepemc
Nation says that leaders of his people have persisted in abandoning this "intergenerational
cycle of sexual abuse" because it is humiliating (Christian & Spittal, 2008, p.l 133).
Co-infection
Co-infection refers to being infected with more than one disease at the same time.
Individuals infected with HIV are at increased risk of co-infection with several diseases,
including Hepatitis C Virus (HCV), sexually transmitted infections (STIs), and tuberculosis
(TB). This is of particular concern given that morbidity can be worse, disease progression

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more rapid, and treatment more difficult for HIV co-infected individuals (PHAC, 2007). Coinfection usually refers to HCV and HIV. Both can be transmitted through sharing drug
using equipment; moreover, liver damage happens faster in people who are also infected with
HIV. Researchers and Aboriginal leadership initiated the Cedar Project, an inclusive,
community-oriented research initiative to address HCV and HIV vulnerabilities among
young Aboriginal people who use illegal drugs. The Cedar Project found out higher rates of
HCV infection in Prince George, which indicates the potential for a considerable HIV
epidemic in the north because HCV is often a precursor to an HIV epidemic (Cedar Project,
2011). The alarming result brought 60 Chiefs from northern communities as well as senior
government officials and service organizations to create the Northern Aboriginal HIV/AIDS
Task Force to prevent the further spread of HIV in northern communities (Carrier Sekani
Family Services, 2006).
Garcia et al. (2002), Hogg et al. (1998), Ory and Mack (1998), and Palella et al. (1998)
found that the introduction of highly active antiretroviral therapy (HAART) has substantially
reduced HIV/AIDS associated morbidity and mortality (as cited in Hinkin et al., 2007).
Palepu et al. (2006) reports methadone maintenance therapy (MMT) played a significant role
in providing improved health outcomes for this susceptible population. Among HIV/HCV
co-infected IDUs on HAART, enrolment in MMT was related with reduced heroin use, and
enhanced adherence, HIV-1 RNA (the viral load) suppression and CD4 cell count rise. CD4
cells are accountable for signalizing other immune system cells to fight an infection in the
body. They are the major object of HIV as well, which can stimulate the number of these
cells to decline over time. The lower the CD4 cell count, the more likely it is that the
person's immune system no longer functions optimally. When HIV infects humans, it

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infects CD4 cells. The virus becomes part of the cells, and when they multiply to fight an
infection, they also make more copies of HIV. The CD4 cell count will also be useful in
discovering when to start antiretroviral (ARV) therapy and whether or not people with HIV
should commence taking medications to avert AIDS-related infections (AIDSmeds, 2009)
and is used in conjunction with viral load to estimate how long someone living with HIV will
remain healthy. The CD4 cell count is a key measure of the health of the immune system.
However, if the viral load measurement is high, it indicates that HIV is reproducing and that
the disease will likely progress faster than if the viral load is low. This success is not shared
equally among HIV infected populations. IDUs and other marginalized groups consistently
exhibit reduced HAART uptake, lower treatment adherence, greater virologic failure, and in
turn, faster progression of their HIV illness (Palepu et al., 2006). Socio-economical and
psychological factors contribute to these trends seen in vulnerable populations (Palepu et al.,
2006).
Continuous Substance Abuse
Reback, Larkins, and Shoptaw (2003) suggest that environmental instability induces
stimulant abuse (as cited in Hinkin et al., 2007). Callaghan, Tavares, and Lawren (2007)
report the high rates of reciprocal movement between on- and off-reserve locations are a
critical public health concern. In their study, 26% of Aboriginal IDUs in northern BC
changed their primary residence from an off-reserve to an on-reserve location. Almost all
those living on-reserve at their first IDU-related admission to a clinic in Prince George had
moved to an off-reserve setting at a subsequent visit. The results show that the problems
associated with both IDU and infectious disease are not restricted to urban centres.

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Anecdotal evidence from local service providers in Prince George (e.g., the Drug
Awareness Recovery Team and PLN) and drug users indicates that there is a growing
involvement of organized crime into the local drug traffic, and that the potentiality of drugs
locally is overwhelming. According to Maclean's third annual national crime rankings,
Prince George had the top crime score among Canada's 100 major cities based on 2009 data
(MacQueen, Cosh, & Treble, 2010). Prince George RCMP said that nearly all crime is
associated with drugs and the gangs who sell them. Criminologists suggest that crime rates
are higher in Western Canada because of a higher proportion of young transient men with
incomplete education, addiction issues, and broken families interacting with conditions of
poverty, insufficient housing, a flourishing drug trade, and gang culture (MacQueen, Cosh, &
Treble, 2010). The combination of greater accessibility and greater potency in the drugs
themselves is not only a determinant in the rise in HIV rates, but also in complicating the
present determinants of an individual's compliance for treatment. This environment fosters
Aboriginal peoples who are off-reserve to fall through the cracks of the health care system.
Ongoing substance use often leads to other social conditions that contribute to
deterioration in health status and illness prevention for persons living with HIV. Colfax and
Shoptaw (2005), Reback et al. (2003), and Sharpe et al. (2004) have found HIV positive
individuals who used both cocaine and methamphetamine were at particularly high risk for
poor adherence to antiretroviral (ARV) treatment (as cited in Hinkin et al., 2007). The
Ministry of Human Resources of B.C. issues welfare cheques to eligible recipients monthly
on the last Wednesday of each month, which is referred to Welfare Wednesday2'. The
monthly welfare cheques dates are correlated with an increase in the likelihood of an
overdose (Riddell & Riddell, 2006), an increase in morbidity and mortality (Verheul, Singer,

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& Christenson, 1997), an increase in hospital inpatients leaving a specialized HIV inpatient
ward against medical advice (Anis et al., 2002), and a decrease in occupancy rate to a
medical withdrawal management (Li et al., 2007). Li, Sun, Marsh, and Anis (2007)
demonstrate that there are significant increases in the number of admissions to the sobering
unit following Welfare Wednesday. Among HIV/AIDS patients who had been admitted to
hospital, those who left against medical advice were more likely to be IDUs and were more
likely to leave on days when welfare cheques were issued (Anis, et al., 2002). Moreover,
discharge back to the home community is further complicated by the difficulty of locating
appropriate housing.
Inadequate Living Conditions
Creating conditions for health is a challenge. People who are the least fortunate and
have social power tend to become dysfunctional and ensnared by helplessness and ill health
(Trussler & Marchand, 1997). This is indeed the primary story of the HIV epidemic among
injection drug users. Difficulty starting or poor adherence to, antiretroviral medication is a
common problem because of high rates of poverty and inadequate housing or homelessness.
In March 2001, the protesters from the B.C. Persons with AIDS Society said that
approximately one third of HIV positive people in B.C. strive to stay alive on welfare
payments that are insufficient to pay for basic health care (CBC News, 2001). In October
2001, the government of British Columbia introduced a new health benefit for individuals on
income assistance who are living with a serious progressive disease. The benefit provided a
monthly health allowance of up to $225 for food ($165); vitamins and minerals ($40); and
bottled water ($20). Not only have rates not risen in a decade, but the BC Coalition of

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People with Disabilities (2010) reports that the bottled water allowance has been removed,
thus reducing the monthly nutritional supplement to $205 a month.
In the report, Finding Our Way Home, the official homelessness opposition critic in the
BC Legislature estimated that there are at least 10,580 homeless people across the BC
province, and 2,000 homeless (almost 19%) people in northern B.C. (Chudnovsky, 2008).
The homeless count in Prince George was 1,050 persons (Condon, 2009), which ranked
second place out of 60 municipalities. However, it is believed that there are many more
"hidden" homeless in northern BC (Condon, 2009, n. p.). Aboriginal peoples who have
alcoholism and addiction problems are over-represented among the homeless. It is estimated
that 41% of BC's Aboriginal peoples are at risk of homelessness and 23% are absolutely
homeless (United Native Nations, 2001).
A continuation of colonization has eradicated families, communities, and an Aboriginal
way of life. Many generations of Aboriginal people have experienced residential schools,
custody through the child welfare system, and economic and social exclusion from
mainstream society. Moreover, the majority of the Aboriginal homeless are residential
school survivors, or are the children of residential school survivors (Condon, 2009). The
United Native Nations Society (UNNS) of British Columbia (2001) states that the
homelessness of Aboriginal peoples appears on the surface to be the result of personal
factors, such as fetal alcohol spectrum disorder, addictions, poverty, poor health, and/or
dysfunctional family relations. Nevertheless, the deeper causes are structural barriers, such
as "unemployment, low wages or lack of income, loss of housing, colonization, racism,
discrimination, patriarchy, cultural and geographic displacement, and the reserve system"
(Baskin, 2007, p.33). UNNS (2001) and Morrissette et al. (1993) assert that the historical

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initiation of foreign structures such as education, justice, health, and child protection have
left Aboriginal peoples in a "cycle of economic dependency" (As cited in Baskin, 2007,
p.33).
Half of the individuals on combination therapies are likely to fail to take their
medication due to poor self-management, such as missed dosage and time, and not following
dietary instructions (Murphy et al., 2001; Nieuwkerk et al., 2001; as cited in Hinkin et al.,
2007). The main problem is that "[u]nstable housing environments are associated with
elevated risk of HIV-infection due to risk behaviours that take place in these environments"
(Corneil, 2006, p. 80). The key reasons for this are that homeless people have no place of
their own to maintain hygiene, store medications, and cook proper meals.
Poor Quality of Health Care
These social determinants of health including poverty, income inequality, racism, and
discrimination are closely associated with vulnerability to HIV infection. Furthermore, the
health system itself is partly responsible for the poor health outcomes evident in these
populations at risk of HIV infection or living with HIV/ AIDS who may not have faith in the
health care system and seek its services (Martin Spigelman Research Associates, 2006).
In its World Health Report, 2000, the World Health Oranization provides an index of
national health care system performance that illustrates how a particular country
accomplishes three core goals: "good health, responsiveness to the expectations of the
popultation, and fairness of finanical contribution" (Ramsay, 2002, p. 212). These indicators
are based on a survey establishing how well patients are treated with diginity, autonomy and
confidentiality, timely awareness, quality of basic amenities, access to social support
networks during care, and choice of health care provider. Canada was ranked thirtieth out of

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191 countries. The Commission also discussed the challenges of governance, calling for a
new approach to the delivery of services for Aboriginal peoples in Canada, whose health
status "continues to be perhaps the [health care] system's greatest failure to date"
(Commission on the Future of Health Care in Canada, 2002, p. 44). People are entitled to
high quality health care that is approachable and available where they reside. Recruitment of
new physicians to the North is not easy and affects referrals, which means Northern residents
rely on medical and transportation services and face poor access to specialized care in some
disciplines (UNBC Northern Medical Program Community Action Group, 2003). A past
executive director of Aboriginal Health, Tabobondung (2007) states that effective
engagement between Aboriginal peoples and health planners, policy makers, and health care
providers is vital because of Aboriginal peoples' history of estrangement from the traditional
health care delivery system, and the system's lack of sensitivity and capacity to fulfill their
cultural and health requirements.
People who have little or no control over the quality or quantity of their medical care
experience a lingering fear of institutions. The reasons for these fears can be traced directly
back to the insensitive paternalistic, unnecessary, undesirable, and latently unsympathetic
treatment of those with tuberculosis (Adelson, 2005). There are many historical examples to
draw from. In Saskatchewan, for example, Aboriginal peoples with tuberculosis were
forcibly removed from their residence and placed in sanatoria to control the spread of the
disease in 1917. Between 1950 and 1969, the ship CD. Howe made summer trips between
the north and the south to transport Inuit with tuberculosis. Individuals diagnosed as
consumptive were sent to sanatoria and not allowed to pack up their belongings or bid
farewell to family and friends (Law, 2010). In the 1930s and 1940s, mortality rates exceeded

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700 per 100,000 Aboriginal persons, and over 8,000 per 100,000 children confined to
residential schools4. After WWII, antibiotic treatment for tuberculosis cleared sanatorium
beds across the country. For Aboriginal peoples, however, rates of morbidity and mortality
from tuberculosis remained high, and with these patterns of poor health came social stigmas
and racial characterizations (Lux, 2001). These examples show how healthcare service
providers and policy makers have historically disregarded the viewpoints, cultures, and
customs of First Nations, Inuit, and Metis clients, and that this legacy continues to produce
"cultural, linguistic, and structural barriers" to services and support (Adelson, 2005, p. 57).
This absence of knowledge collides with prospects and experiences about medical service
delivery, financial and non-insured health benefits, or lack of information about existing
services. Moreover, these obstacles do not facilitate service providers to establish a trustbased relationship with HIV/AIDS clients.
Many people living with HIV who have a diagnosed mental illness or substance abuse
problem are not getting appropriate care/treatment; and the majority had either no health
insurance or depended on government programs (AIDSmeds, 2008). Without antiretroviral
treatment, the average time span from initial HIV infection until death is approximately 12
years. More recently, new diagnoses are predominantly from amongst intravenous drug
users who share needles with each other. These two factors conspire to keep the topic of
HIV transmission in many societies off the public agenda. However, ignoring this public
issue is ill-conceived and will be pricey in the long term, both socially and economically
(World Bank, 2002).
It is estimated there are about 12,000 B.C. residents currently infected with HIV, but
only about 5,000 of them are taking the necessary medications to suppress the virus and keep

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them from getting sick (Hansen, 2009). The BC Provincial Health Officer, Dr. Perry
Kendall, found the mortality rate for Aboriginals due to HIV/AIDS has more than doubled
since 1993. Very marginalized individuals in northern B.C. represent five percent of the
total B.C. population, but they represented just over 15 per cent of all new HIV incidences in
2006. Many individuals with injection-drug use and mental-health problems live in centres
like the Vancouver Downtown Eastside with no access to primary care or the antiretroviral
therapies (Hansen, 2009). It is not unusual for health care workers, police officers, and
civilians to see a homeless Aboriginal man lying on the street of the Downtown Eastside. A
witness reported to the media that a homeless Aboriginal man lay passed out on a bench in
Grandview Park on July 29, 2009 for nearly seven hours. When paramedics and firefighters
finally arrived, the witness claimed they were derogatory and provided substandard care. A
firefighter was heard to say, for example, "that's what you get for drinking Lysol" (Dalton &
Tebrake, 2009). Reader comments on the online copy of this article included the following:
"Take the bloody junkies, bums and homeless and put them to work; this is ridiculous all this
bleeding heart blame games; make them work for their cheque" (Dalton & Tebrake, 2009).
According to Smith (1999), the poorer standard of care appears to originate from a
mixture of ignorance, fear and prejudice. Additionally, many providers hold the belief that
all marginalized groups should accommodate to the services rather than the other way
around. A Health Canada and UNAIDS study proposes that the lack of provider-client trust
and of women-centered research, and general mistrust of confidentiality laws keep on
intensifying the fatalism of women, minority people, and marginalized groups regarding the
manageability of living with HIV or AIDS (Anderson, Garnett, & Weiss, 1999).

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Lack of Empowerment
Empowerment is a process of enabling people to gain personal control over social,
political, economic, and psychological factors through access to information, knowledge and
skills, decision-making, individual self-efficacy, community participation, and perceived
control (Gibson, 1991; Zimmerman, 1988). Empowerment is also an outcome of enabling
both people to take responsibility on their own health and institutional facilitators to take this
responsibility (Harris & Veinot, 2004).
Lack of power, self-blame, and low self-esteem have combine with discrimination and
vulnerable social conditions to bring vulnerability to illness and poor prospects for health
(Trussler & Marchand, 1997). The empowerment of individuals and communities is a
desired health goal because health promotion is the process of enabling people to increase
control over and to improve their health begins with self-empowerment (Trussler &
Marchand, 1997). An HIV diagnosis destroys people's feeling of confidence to manage their
health. Experiencing empowerment comes from inner security, which leads people with
HIV/AIDS to seek health promotion and maintain greater health.
Because of the chronic relapsing nature of drug dependence and no one-size-fits-all for
the treatment of drug users, it is essential for people with HIV/AIDS to be empowered to
participate in effective HIV positive prevention programs. The purpose of these programs is
to promote healthy sexual relations among HIV-positive and/or HIV-negative sexual
partners, strengthen the sexual health and well-being of people with HIV, and reduce the
possibility of new HIV infections and other STIs.
Harm reduction approaches are an important example of the use of empowerment in
public health policy and programming. Harm reduction refers to policies, programs, and

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assignments that attempt to broaden the perception of substance abuse management and to
diminish the adverse health, social, and economic problems connected with substance use,
which affect the individual, the community, and the society as a whole without requiring
abstinence from drug use (Riley & O'Hare, 2000;CATIE, 2009). Harm reduction practices
include needle exchanges, distributing condoms, giving information and education about
sexual transmission of HIV, methadone maintenance5, outreach crack-pipe distribution, user
empowerment projects, safer drug-use sites, heroin prescription, social justice projects, and
supporting people's physical, social, and emotional problems. These services are intended to
reduce the effects of potentially harmful behaviours. Harm reduction approaches can bridge
gaps and offer services to address the homeless and street involved people who may not have
contact with health services. While the concept itself appears to be a pragmatic, nonjudgemental approach to illness prevention and health promotion, there is much
disagreement and debate in public health policy and research about the effectiveness of harm
reduction programs. These debates are discussed in the followings.
Debates about Harm Reduction
The principles of harm reduction are as follows.
Pragmatism. Containment and amelioration of drug related harms may be more
practical alternative than efforts to make a drug-free society (Riley & O'Hare, 2000; CAMH,
2009). Harm reduction is based on the principles of "compassionate pragmatism rather than
moralistic idealism" (Hudson, Ward, & Laws, 2000, p. 512). A fundamental feature of harm
reduction emphasizes human values: harm reduction approach is a pragmatic, nonjudgmental response that fulfills users where they are with respect to their substance use

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(Thomas, 2005); it provides substance users a choice of how they will reduce harms to
themselves.
Autonomy. If the person's use of drugs is acknowledged as fact (Riley & O'Hare,
2000), the drug user's decision to use drugs is also accepted as a personal choice without
moralistic judgment and social exclusion (Riley & O'Hare, 2000; CAMH, 2009), which has
been displayed by the Aboriginal community: '"the philosophy of harm reduction
encourages us to reach those outside of the circle and welcome them back in... [We]
recognize that everyone in the circle is affected and thus has a responsibility to make this
circle whole'" (Aboriginal Peer Project, 2000 as cited in CAMH, 2009). Harm reduction
encourages people living with HIV to approach providers for additional treatment, if and
when they are ready. To emphasize a point, providing sensible choices is to offer
empowerment in order for users who are knowledgeable and experienced to make choices
and to change their behaviours, to create less harmful environments, and to control their
ongoing use of substances. The harm reduction approach focuses on non-judgemental
information about properties and effects of different drugs, about the law and legal rights,
and about how to decrease hazards and where to obtain help; thus, it helps people to develop
a wide range of skills in assessment, judgement, communication, assertiveness, conflict
resolution, decision-making, and safer-use (Marlatt, 1998).
Focus on harms. The goal of the focus of harm reduction programs is the reduction of
destructive consequences without necessarily requiring any reduction in use, but asking a
change in mode of administration or pattern of use (CAMH, 2009). Thus, a lower prevalence
of drug use is not the goal of harm reduction but the users' eventual goal.

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However, the development and implementation of Aboriginal-specific harm reduction
policies and programs face challenges owing to majority support for abstinence and
prohibition, stigma, accessing care, availability of services, jurisdiction and funding,
childcare, and cultural appropriateness (Dell & Lyons, 2007).
Majority support for abstinence and prohibition.

Harm reduction cites that abstinence

is not an essentially rational or desirable target. Harm reduction, or "substance use
management," offers pragmatic choices, other than abstinence or a jail sentence, in order to
respect substance abusers' rights without any self-righteous judgement (Johnson, 2003, p.
160). However, majority Aboriginal communities' support for abstinence and prohibition
has been identified as a barrier to offering and expanding harm reduction services (Canadian
Aboriginal AIDS Network, 1998; Erickson, 1992; Wardman & Quantz, 2006).
Stigma. Harm reduction programs are frequently wrongly regarded as a suggestion of
failure and "as the last stop after treatment options have failed" (Wardman & Quantz, 2006,
p. 9). Harm reduction cites that criminal justice interventions, which augment stigma (Killias
& Rabasa, 1997). Aboriginal people living with HIV/AIDS dealt with layers of stigma
besides drug use, incarceration, and their HIV/AIDS status (Jackson et al., 2006).
Accessing health care. Aboriginal peoples are generally reluctant to access health care
due to fear of harsh judgment from their communities and discrimination from health care
providers. Brenda Loyie was HIV positive and a member of PLN. Before she passed away,
she shared her experiences of living with HIV and discussed important issues such as
confidentiality and discrimination in the video, Hospital curtains are not walls (AIDS Prince
George, 2002). She gave the health care workers an important message: "respect
confidentiality, value input, listen to the [HIV person] 's voice, don't judge a book by a

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cover." At the waiting room, her doctor passed by her and greeted her, "How is your HIV
coming along?" in front of the public and her kids, who did not know of their mother's
disease. The lab technician and the nurse preferred to do their jobs rather than listen to
Brenda's concern of body condition/advice of usage of needles. They judged her appearance
by her tattoos and HIV staus and ignored her when she said, "I am an ex-IDU" (i.e., skipping
the word "ex"). After viewing this video, a female PLN member had the same experience:
she was rushed to the lab because it was almost closing time. The technician asserted that
she would not mind taking blood. But as soon as she heard that her client was HIV positive,
she refused to do it.
Availability of services. The lack of local services means individuals are forced to
travel long distances, on top of that, transportation costs, family responsibilities, work
commitments and childcare concerns (Currie, 2001; Wardman & Quantz, 2006; Women's
Health Bureau, 2001). Some physicians may not follow exactly to guidelines for prescribing
methadone (for example, by providing urinalysis and counselling), and thus some clients
might sell it. In addition, not having access to harm reduction services on reserves and in
rural areas, such as a needle exchange, can be a potential health threat to a community as a
whole.
Jurisdiction andfunding. Aboriginal peoples were devastated by the spread of
tuberculosis and also encountered jurisdictional conflicts arising over the provision of health
care. Services to Aboriginal peoples are divided among federal, provincial, and local
governments. When Aboriginal peoples and communities ask for harm reduction training,
for instance, jurisdictional conflict and funding are cited as major barriers to programs. Only

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First Nations and Inuit qualify for funding under Health Canada's Non-Insured Health
Benefits program, to the exclusion of those without 'status' (Dell & Lyons, 2007).
Childcare. Childcare prevents Aboriginal women from accessing harm reduction
services. They are afraid of social service authorities taking custody of their children. The
probability of an Aboriginal woman's child being apprehended is much greater than for all
other women in Canada (Kellington, 2001; British Columbia Human Rights Commission,
2001). A related barrier is a lack of childcare services for women while accessing harm
reduction services (Dell & Lyons, 2007). Fear of child apprehension among Aboriginal
women originates from the historic actions of the Government of Canada: Aboriginal
children being adopted without the consent of their families and bands in the 1960s,
residential schooling, and children being removed from their family homes without parental
consent (Dell & Lyons, 2007).
Cultural appropriateness. Given the substance abuse-related harms faced by First
Nations, Inuit and Metis in Canada, existing and emerging harm reduction services need to
be culturally appropriate so they will be accessed (Jackson, 2005). A study of Aboriginal
women who inject substances in Vancouver stressed the importance of having more service
providers with "similar cultural backgrounds and life experiences" (Benoit, Carroll, &
Chaudhryc, 2003, p. 826). It is important to understand this concept as it connects
particularly to Aboriginal peoples because any sort of harm reduction among Aboriginal
peoples is recognized that for some, Aboriginal traditions, customs, and cultural ways are not
congenial with the use of mood-altering substances.
What evidence do we have harm reduction strategies work? Needle and syringe
exchange programs are examples of harm reduction programs which prevent the

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transmission of HIV among injection drug users (CAMH, 2009). At Insite, a supervised
injection facility located in the Downtown Eastside of Vancouver, BC, has provided
preventive medical measures since 2003. Drug users stop sharing the needles, which prevents
the spread of HIV, HCV, and other infectious diseases, and helps prevent drug users from
overdosing (CATIE, 2009). Most of all, for drug addicts, accessing healthcare services at
Insite gives clients an empowering experience. That is, IDUers make a choice to access a
clean needle, have a safer injection environment, and dispose a used needle to protect others
from getting infected.
Insite has increased the use of detoxification and treatment services according to the
scientific evidence (CATIE, 2009). However, there are major controversies surrounding
harm reduction approaches. Opponents of these approaches believe that they are not only
morally but legally wrong; for instance, the federal government kept delaying its decision
about operating Insite because federal laws do not permit drug addicts to have illegal drugs
for medical use (CATIE, 2009). Beyond debates about evidence, opponents of these
approaches, including many policy makers, are simply ideologically opposed to investing in
harm reduction interventions.
The health care system needs to find innovative ways to build trust and to provide
service that is flexible and appropriate to HIV infected injection drug users who are
discriminated against when attempting to access this care. The public and governments
should recognize that incarceration is not an answer and apathy is not a solution (Anderson,
Garnett, & Weiss, 1999). Health professionals bear a significant responsibility for efforts to
reduce discrimination and promote social supports enabling people to negotiate life's crises
and social cohesion helping to stabilize health-threatening situations by including and

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accepting people, and by enabling them to participate fully within our families, our
communities, and our society (Martin Spigelman Research Associates, 2006).

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~ Chapter 3 ~
METHODOLOGY
Qualitative Methodology: Participatory Action Research
Quantitative methods have dominated research in global health and health care. Such
approaches are not always the most useful, especially if the objective is to provide depth of
understanding for what persons with HIV/AIDS are really thinking and feeling. Everybody
involved in the delivery programs would benefit from listening more carefully to
participants. Analysis of qualitative data not only constructs the evidence needed to appraise
programs and services but also might be employed to identify the strategic directions for
service providers (Trussler & Marchand, 1997). Living with HIV is a very different
experience compared to living with other incurable diseases because it is closely involved
with very powerful, social, and personal creations of shame, stigma, and prejudice. In spite
of these factors, qualitative research on the exploration of the meanings and experiences of
people living with HIV/AIDS is very limited (Goldstein, 2004).
It is important therefore not just to count the number of persons with HIV, but to hear
their stories. People living with HIV can tell us much about how to enhance health
promotion6. An essential task for qualitative research is to discover the roots of HIV
vulnerability. Ideally qualitative research would help people already infected learn about
themselves and how they may contribute to a better understanding of what is encumbering
HIV prevention, support, care, and treatment (Trussler & Marchand, 1997). For these
reasons, I have employed a participatory action research approach in this thesis, and the
approach is described in the following section.

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Participatory Action Research
Participatory Action Research (PAR) is all about advocacy and participation. In PAR,
a major characteristic is to produce social change (Maguire, 1987) and improve quality of
life (Stringer, 1999). PAR is also called action research, which aims to enhance the lives of
persons by studying the issues or problems they recognize and deal with straightforwardly
(Mills, 2000) and has been described as "community-based" inquiry that "take[s] into
account people's history, culture, interactional practices, and emotional lives" (Stringer,
1999, p. 17). PAR promotes community development, which is often referred to as the hub
of health promotion. For instance, community based agencies use PAR to understand better
the experiences and perspectives of persons living with HIV and help ensure a more caring
environment for disease management and prevention (Trussler & Marchand, 1997). In this
spirit, I engaged in PAR in order to articulate my social stance with the social location of
people living with HIV/AIDS.
Why PAR Is Useful
The fundamental ideology of PAR is that research should include an action agenda for
reform that may change the lives of especially marginalized participants. The PAR approach
allows participants to experience a sense of ownership in the social research process, rather
than being passive research subjects. Therefore, the researchers provide a voice for these
participants raising their consciousness and improving their lives. Hart (1992) says
participation refers generally to the process of sharing decisions which affect one's life and
the life of the community in which one lives.
Participation is the essential right of citizenship. The belief behind such participation is
motivation; people can design and manage the goals of the project of positive prevention

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together if they feel some sense of ownership in them. This ownership motivates
involvement, which fosters competence and in turn, motivation for further projects. The
researcher seeks to achieve empathetic neutrality, a non-judgemental and nurturing stance
that can lead participants to experience a deep level of trust that may tempt them to disclose
more deeply than is in their best interest.
The researcher uses her/his "expert" role to gain entry into the field but then
relinquishes the role of expert in a collaborative pursuit of the participants' meaning-making
world in a mutual exchange of meaning-making that does not impose the researcher's
interpretations and viewpoints (Krauss, 2005; Morrow, 2007). This mutuality entails
engagement, empathy, and emotional involvement with participants' worlds to lead to deeper
understanding of those worlds. I am not an expert who passes judgement on the participant,
but an active learner/listener who is responsive to the human issues in establishing the
rapport, which is central to gathering effective data (Morrow, 2007).
Procedure
I employed a methodology that combines private interviews, focus groups, and various
ethnographic methods (e.g., participant observation, intensive field note writing). I
conformed to the UNBC policy on research in order to employ data collected involving
human participants. After I had approval by the UNBC Research Ethics Board, individual
interviews were conducted in Positive Living North (PLN). I obtained a letter of permission
from PLN Client Services manager Mr. Steve Lorenz in order to access their clientele.
Clarifying the Role of Positive Living North in My Research
For a university student to access this group in a respectful and meaningful way, PLN
support is essential. PLN provided a space for Positive Prevention meetings and for the

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research meetings for this thesis. It also supported the Positive Prevention project group as
an ongoing relationship building exercise prior to the start of this research. Mr. Lorenz
provided staff time and resources to promote and support this project. The Education
Department of PLN offers HIV prevention materials and resources. These are necessary
supports for the population that this research addresses and who can most productively
inform this research.
Clarifying My Role in PLN
From January 2008 to January 2009,1 attended the Positive Prevention program (PP)
every second Thursday facilitated by PLN and Dr. Theresa Healy, who is also the Northern
Health Regional Manager of Healthy Community Development. The duration of the meeting
was 90 minutes (10:00 to 11:30). According to Kamberelis and Dimitriadis (2008), focus
groups allow the participants more involvement in the research process, decentralizing the
role of the researcher and providing a more democratic style of research. My role was that of
participant-as-observer in focus group sessions with staff and members as Front Line
Warriors (hereafter referred to as PP Warriors). I also recruited non PP participants to do
one-on-one interviews (hereafter referred to as Non-Warriors). Although these NonWarriors were clients of PLN, they did not join the PP regularly. The objective of the focus
group interview was not to problem-solve or make decisions, but rather to allow members to
hear about each other's impressions concerning a range of issues relating to HIV prevention
and education, and support for those living with HIV. The focus group was conducted by a
facilitator (Dr. Healy) and an observer (me). My active role in this activity helped me to
develop a rapport and trust with PLN members, and provided me with a deeper
understanding of the kinds of services and benefits that community-based organizations play

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in supporting Aboriginal persons living with HIV. The bi-weekly meetings helped
interviewees to feel comfortable enough to meet with me to answer a few questions.
How Interviewees were Engaged
The Positive Prevention program is an ongoing prospective cohort study involving
people with HIV/AIDS who reside in Prince George and members of Positive Living North
(PLN). This program was underway before I joined in January 2008 and facilitated by Dr.
Healy and Mr. Lorenz.
The recruitment process for this thesis research was limited to active Positive
Prevention project members who had well established relationships to the program at the
time of my research. PP Warriors signed a Confidentiality and Privacy form (appendix E)
and Member Services Code of Conduct (appendix F) to show their commitment towards PP
program. This included a strong understanding of confidentiality and mutual support, partly
as a result of participation in other community based research initiatives. The five NonWarriors read the information sheet and signed the consent form prior to participating in oneon-one interviews (appendixes G & H).
Respondents were notified verbally at the Positive Prevention research meetings
(underway at Positive Living North), and by word of mouth at PLN. A poster was not
required because the recruitment was limited to the members of PLN (PP Warriors) who are
part of the existing Positive Prevention Project and the PLN clients (Non-Warriors). This
group had an established rapport and confidentiality code that would be violated if open
advertising were undertaken.
When I began attending Positive Prevention meetings, I let PLN staff and PP
participants know about my compassion for people living with HIV/AIDS, my objective and

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background information of my participation, and a commitment of transparency. I assured
them that I would employ a respectful engagement process and that their views would be
taken seriously. Participants were offered $ 15 honorarium per hour. When participants
agreed to come to the interview, I explained the purpose of the study, the roles and
responsibilities of participants and researchers, and then written informed consent was
obtained. Each interviewee was given a survey questionniare (as shown Appendix C:
Interivew Guide) at the first meeting. After completing the survey, interviews were digitally
recorded and transcribed at a later time.
The topics of discussion were perceived to be sensitive in nature. Potential respondents
could reasonably be expected to regard the probability and magnitude of possible harms
implied by participation in this research to be no greater than those encountered in those
aspects of their everyday life. However, I ensured that I had PLN staff on standby and also a
list of Prince George counselling services were made available to participants. This list of
community support people were known and trusted by the participants.
How to Guarantee Confidentiality and Anonymity
Ensuring confidentiality and anonymity with these methodologies was difficult.
Identity was shared within the group setting of the focus groups. The major work of
ensuring confidentiality had been the building of trusting relationships and support to
improve individual understanding of the importance of confidentiality and anonymity among
group members. The group members who participated in this research developed their own
code of conduct (as shown Appendix F), which included agreements about confidentiality
that each member signed upon agreeing to participate in the research. A major feature of this

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contract was the understanding that if a member wants something to remain absolutely
confidential, they should not share it with me.
Data Sources and Analysis Plan
Individual Interviews
Eligibility criteria specify that participants are members of PLN and live in Prince
George. Between October 2008 and January 2009, 13 participants were recruited by word of
mouth. Of these, 12 participants completed a baseline questionnaire. Analysis of the
questionnaire data was done to provide a glimpse of the demographic, socio-economic,
health, and psychological statuses of PLN participants, including members who participated
in the PP program, or PP Warriors, («=8), and members not involved in the program, or NonWarriors (n=5). Participants were given a $15 stipend at each private interview as
compensation for their time.
Interviews with PLN members, administrators, health care workers, and operations
staff took place in neutral settings. I made it clear each time that whatever was discussed
was recorded in field notes and a voice recorder without identifying characteristics or names.
The interview duration did not typically exceed the 90 minute maximum target.
Participant Observation
I presented myself at the site of PLN and approached participants in groups and
individually, and talked informally with PLN administrative staff. It was my experience that
informal settings were best for putting participants at ease to share their thoughts. I also kept
a self-reflective journal to help enhance my effectiveness as a participant-observer.

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Positive Prevention Meeting Minutes
PLN meeting minutes were described by the members and staff as important sources of
information about opinions, perspectives, and relations amongst staff and clients. The
minutes were often recorded by a participant or an observer, then typed or handwritten by a
volunteer participant. The minutes were available to participants to peruse.
Field Notes
Numerous field notes were taken throughout the course of the research. Although such
notes were strictly confidential, edited versions of some of these notes (without names or
identifying characteristics) were transcribed. A written transcript of the interview was
prepared for review by the respondent, and any requested revisions to improve the accuracy
of the account were completed.
Analysis involved coding transcribed data to determine emergent themes. Notes taken
during interviews and my self-reflective journal entries were consulted to ensure that the
themes I identified were in context and match the observations I noted at the time of the
interview. There were follow-up participant checks to assure that my subjectivity did not
dominate and the participants' perspectives were fairly represented. While preparing the
Results chapter, I reviewed minutes of meetings I produced in my field observation notes.
These helped me to establish not only where other participants were but also where I was as
the meetings took place.
How the Research Results Will Be Made Available to Participants and Public
As a participatory action research project, the results will be available to and worked
on by the participants. The participants will also contribute to decisions about how the
results will be shared with the public. My expectation was that the group, at a very minimum

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wanted to have a public presentation and produce a document or video (e.g., Report on
activities or a Digital storytelling video). Positive Living North (PLN) is a non-profit
organization, which means the PP project has insufficient funds to cover expenses for these
activities, and thus, PLN has kept applying for government research funding. Participants
also wanted to have presentations not to the public but to places of influence such as to staff
meetings, to the board of Positive Living North, to the Northern HIV Task Force, and to
Northern Health. The participants at the Positive Prevention program, PLN staff, Dr. Healy,
and I were invited to the 2008 HIV symposium held in Prince George, on October 15 and
gave a presentation, "Fighters on the Front Line:Positive Warriors (PWAs) Preventing HIV
transmission" along with a digital story telling video that the PWAs themselves had been
involved in making.
I did my presentation of preliminary findings on January 7, 2009 in front of PLN staff,
elders, the PP members, and received feedback and directions for dissemination and
communication of results. Unfortunately, the Non-Warriors were not engaged. Two
Aboriginal elders appreciated the PP program in their community.
Ethical Considerations
The cardinal principle of conducting ethical qualitative research is respect for human
dignity. This principle aspires to protect the multiple and interdependent interests of the
participant from bodily, psychological, and cultural harm. The principle of respect for
persons translates into the dialogue, process, rights, duties and requirements for voluntary
and informed consent by the research participant. The best time for informed consent is at
the beginning of the research relationship so that researchers help participants anticipate their

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own reactions, insure their ongoing consent during the process, and keep open the possibility
of the participant withdrawing if it is in her/his best interest to do so.
Ethical judgment is critical in qualitative inquiry because of the interpersonal dynamics
involved, and because it involves collecting and interpreting data of a very personal nature.
Therefore, a researcher's ethical judgment is an ongoing-praxis-process and is guided by
values such as egalitarianism, cultural sensitivity, and respect of his/her relationship with
participants (Morrow, 2007).
The informed consent form does not automatically signify privacy, confidentiality, and
anonymity. It is the responsibility of the researcher to uphold these standards. The standards
protect the access, control, and dissemination of personal information and thus help to
protect mental or psychological integrity. PAR researchers can be identified as interpretive
interactionists, who are committed "moral thinkers," rely on "sophisticated rigor" (i.e.,
researchers are committed to make their interpretive materials and methods as public as
possible) and explore from a "feminist, communitarian ethic with a moral ethnography to
build collaborative, reciprocal, trusting, friendly relations" (Denzin, 2001, p. 42).
PAR requires and values the development of authentic collaboration, which creates
trust between researcher and participant to greater mutuality (or empathy) in the
understanding of findings, to more equalized control in research relationships, and to
maintain the equilibrium of openness to empirical, personal, and aesthetic insights (central to
emancipatory knowing) and trust (Schram, 2003). The PAR researcher acts as a critical
ethnographer who has greater mutuality (or empathy) in the understanding of findings,
allows the participant to have equal control, and maintains openness and trust in research
relationships. The PAR researcher thus plays the roles of democratic facilitator and

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consciousness-raiser between authoritative institutions and marginalized citizens to bring
about progressive social and community-based reforms (Denzin & Lincoln, 2005).
It is important for the researcher to acknowledge the role of historical trauma in the
health of Aboriginal peoples when collaborating with Aboriginal peoples who experience
poorer health and socio-economic conditions than the general population in Canada (PHAC,
2007). Researchers must understand the history and status of Aboriginal Canadians because
they should be aware of the impact of how lifelong social problems contribute to a
vulnerability to physical and mental health problems. Socially marginalized individuals tend
to have the most difficulty in coping with social problems due to their ethnicity. Finally, the
Aboriginal population has been controlled and patronized for a long time, and researchers
must be mindful that their research practices do not reinforce colonial attitudes.
The ethics of PAR are committed to emancipatory knowing, or openness to empirical,
personal, and aesthetic insights. As a research assistant, I participated in Positive Prevention
program for HIV/AIDS engaging with PAR. I found myself in the difficult position of
having to assess and articulate my stance on numerous ethical issues. Two participants told
me that they use injection drugs (e.g., heroine) and methadone as long as they can afford to
buy them. They told me how they can make money to pay their illegal drugs. After each
involvement, a participant is paid an honorarium of $15,1 was initially concerned that
participants might use the honorarium to help purchase drugs and wondered if it might be
better to offer participants a grocery voucher instead of giving cash. I asked a facilitator of
the program in private about this. The facilitator gave me the following response: "I don't
ask how you spent money that came from a scholarship or student loan. It is not my business.
It's your privacy and your moral responsibility." She went on to state that the participants

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came to PLN for one and a half hours and deserved to be reimbursed for their time and
efforts. Therefore, she told me, we have to respect the autonomy and privacy of the
participants. She told me that our participants do not rob, steal, or sell their bodies as long as
they come to the program. At the end of our conversation, she suggested I employ both
reason and compassion to develop my stance on ethical issues.
PAR is characterized by shared ownership, dialectical, and transformative commitment
to community action and so intends to assist people to convalesce, and liberate themselves
from the constraints embedded in social media (Kemmis & McTaggart, 2000). From this
starting point, PAR seeks to assist vulnerable persons (e.g., those with diminished
competence/ decision-making capacity) to recover, and release themselves from the
constraints embedded in social media (e.g., social stigma, financial disadvantaged).
The ethical principles of PAR are equity (i.e., recognition of systematic disadvantage,
requiring counteraction and compensation), restitution (i.e., acknowledgement of institutional
responsibility in forming rectifiable conditions), and procedural justice (i.e., value of how
relationships are lived) to serve social justice, and a participant's autonomy (Hagey, 1997).
Denzin (2001) proposes that researchers should employ an interpretive approach when they
desire to scrutinize the relationships between individual difficulties (such as "wife battering
or alcoholism") and the public policies and public institutions that have been formed to
attend to those predicaments (p. 2). Therefore, they must "grasp, understand, and interpret
correctly the perspectives and [lived] experiences" of those persons who are served by an
applied program in order to construct concrete and valuable programs (p.3). In order to
prevent "conflict of interest, imbalance, taking sides, intrusion, influence, and dissemination"
(Forbat & Henderson, 2003, p. 1457), the PAR researcher seeks to achieve '"empathetic

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neutrality'" (Patton, 1990, as cited in Hoepfl, 1997, p. 60). Also, the PAR researcher acts as
a "cultural critic" (Ryan, Gerrene, Lincoln, Mathison, & Mertens, 1998, as cited in Denzin,
2001, p. 5), who requires collaboration, perceiving as '"rooted in cultural traditions of
common people'" (Denzin & Lincoln, 1994; as cited in Halmi, 1996, p.4) to form
sophisticated trustworthiness.
Research Limitations
Several limitations of this study should be acknowledged. Collecting data had its
challenges. I did face-to-face interviews with people with HIV who are members of the
Positive Prevention project (i.e., PP Warriors) and also are not participants of the project but
are members of PLN. I have termed these individuals as Non-Warriors, who knew my
research through word of mouth and also were motivated by the honorarium. The NonWarriors were not part of the PP focus groups at the time of my involvement. Some had
regularly attended group meetings at the beginning of the PP initiative, but were no longer
eligible to participate as Warriors because of absences. All of the Non-Warriors had some
level of exposure to the PP initiative by way of daily interactions with Warriors. I therefore
chose to include interview data from Non-Warriors in the analysis because these individuals
had valuable insights to share about the program, as well as the PLN environment more
generally.
I had to contemplate how I would recruit participants from PLN in order to fulfill the
requirements of UNBC's Research Ethics Board. The reasons are that my research topic is
very personal. At times, staff from PLN who did not know the arrangement between me and
an interviewee interrupted the interview. I also tried to collect data from PLN staff and
health care workers in Prince George via e-mail. The first challenge was getting the consent

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form from them via e-mail. I had to ask them to e-mail me back with their dated consent
form, which indicates that they understand and agree with the form. The second challenge
was that the rate of participation in my survey was low, and the duration of collecting data
was longer than I expected. PLN staff may not have responded to the survey because they
had not participated in the Positive Prevention program.
Getting consent was not a challenge and participants were already sharing their stories
and appear to have come to trust me. During the interview process, I asked for signed
consent (Appendix G) and was never refused. I took extra time to explain why I needed
signed consent and how this research could benefit participants and their community. The
reason for their acceptance of my request may be that I had trusted community members
such as Dr. Healy and Steve Lorenz with me which validated the work I was doing. The fact
that I had worked in and with the PLN, may have also put people more at ease when I
requested signatures on the consent forms. However, one respondent verbally agreed with me
to have an interview at the certain time, but he did not show up.
In order to pursue PAR values, the research design had to be flexible to suit the
circumstances, preferences and comfort-level of participants. In the first place, my sample is
not a representative one of Aboriginal or non-Aboriginal peoples who reside in Prince
George. After reviewing the data collected, I found that there was no consistency of
interviewing questions because each interviewee had different topics to discuss, and time
was limited. Thus, it is important to use the interviewer's reflections in subsequent
interviews to improve the quality of the interview. When interviewees were filling out the
survey questions, I had to ask questions that may have distracted participants. I asked
participants, "How do you rate your health?" and requested them to choose only one

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response from a choice of poor, average, and above average. This closed question
discouraged participants from offering full and meaningful responses based on their
experience, knowledge, and feelings. Thus, I regretted not asking participants why they
rated their health as they did. Sometimes I spent too much time on one question. Two
participants did not complete the last page of the questionnaire. In spite of these limitations,
the data I collected through various means (e.g., interviews and observations) were rich and
more than sufficient for the purposes of this thesis research.

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~ Chapter 4 ~
RESULTS
The results of this thesis are based on the stories and lived experiences of 13 PLN
clients (including 8 PP Warriors and 5 Non-Warriors), and interviews with four PLN staff.
The interview questions are sensitive and personal in order to provide not only socioeconomic, psychological, and other contextual information about people with HIV/AID in
Prince George, but also how these people cope, for instance, in the community and with the
health authority.
I built data clusters from gathering material (e.g., field notes, minutes, and interview
data) about the text and synthesized these into a cohesive structure using open coding (i.e.,
emerging raw data broken into manageable chunks), an audit trail (i.e., employing
participants' quotations), and axial coding (i.e., assembling the big picture and acquiring new
understanding of a phenomenon of interest). I manually coded transcribed data using
highlighter pens, identifying key phrases, themes, and specific "take-home" messages about
PP and harm reduction programs. I then designed a framework for managing data based on
my research objectives and questions. I grouped common codes into themes and revisited
these concepts, codes and themes to look for consistencies and relationships. I presented the
results of this process to participants and employees at Positive Living North in January
2010. Those in attendance accepted the results and provided some further direction about
how they would like to see the results used to educate policy makers, providers and the
general public about the program.
Experiences of the Positive Living North Staff
I sent the survey questions for the Positive Living North Employees via electronic mail.
Four out of twelve staff that have worked and provided services in the Positive Living North

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in Prince George, B.C. responded to the following questions. The responses to each question
are summarized below.
Barriers to Awareness and Prevention amongst PLN Clients
According to staff who participated, the foremost barrier to awareness and prevention
amongst PLN clients is a substance addiction. Moreover, staff participating in this study felt
that clients have no motivation or interest in becoming aware and learning preventative
measures because they cater to active addictions. The second barrier to awareness and
prevention amongst PLN clients, according to these PLN staff, is the lack of information
about HIV. People with HIV often do not learn about the risk factors7 until after they
become HIV positive. One of these surveyed stressed that it is an issue of timing, in getting
to the members when they are in a good place, to ensure they have information that is
relevant to them. Other barriers are that personality characteristics such as low self-esteem
and coping responses also influencing risk behaviour. To cope with stress, some people
participate in high-risk sexual behaviours or use drugs and alcohol (Kalichman, 1998; Zierler
& Krieger, 2000).
What Does Positive Prevention Mean to the PLN Staff?
"Positive prevention (PP) puts those who are most intimate with the issues in the driver
seat," said Steve Lorenz, PLN Client Services manager. PP is seen as a way to empower
those living with HIV; that is, these individuals can do something positive with their illness
and feel that they are contributing to society. Staff see PP as a way for people who are living
with HIV to use their own experiences and stories to teach HIV prevention, which they see
as a very effective way to reach others in the community who are living with HIV/AIDS.
Staff felt that conventional prevention approaches cannot succeed because they do not

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recognize the needs, desires, and experiences of people living with HIV and AIDS. Staff
also felt that there was a greater need for services that delay disease progression and
opportunistic infections, including tuberculosis (TB) and sexually transmitted diseases.
Finally, it was felt that PP provides a very therapeutic environment for providing education
and training, and increases psycho-social wellbeing by encouraging solidarity amongst
people living with HIV/AIDS.
How Do You See the Positive Prevention Program Helping PLNMembers?
The staff gave the three essential components that the following effects share in order
to respond this question. First, the program helps build solidarity amongst members and
gives PLN members a chance to get together and relate common experiences. Second, PP
can increase the self-esteem and self-worth of PLN members because these individuals will
feel that they are making a very positive contribution to their community. Third, it gives
members a sense of accomplishment and a set of skills they can utilize and offers them a safe
a therapeutic environment to make changes in their lives if they wish. For instance, members
may be more motivated to quit active addictions, find home, end bad relationships, and so on.
As a result, the overall well-being and health of person living with HIV will be improved.
How Do You See the Positive Prevention Program Helping the Staff?
PLN staff who completed the survey said that PP provides an outlet for staff to get
close to, and learn more about, the members' lives, which increases the bond between
members and staff. The staff said that working in partnership with PP participants is
important as education can teach the basics about HIV, and the PP approach puts a face to
the epidemic and makes prevention efforts more relevant to participants.

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How Do You See the Positive Prevention Program Helping Health Promotion Programs?
The program brings staff into the program, which allows them to better understand the
needs of positive people, while also learning what kind of supports the members are looking
for. It helps the staff meet the prevention mandate and look at members as partners rather
than simply program recipients.
What Issues Are Critical to PLN Members Living with HIV?
The PLN staff asserted that the issues members are dealing with are often individual
and vary, but by far the two issues that are most widespread are addictions and housing. The
combination of HIV and addiction can be fatal because of overdose, non-adherence to
treatments, drug interactions (making normal doses of medication end up as super-high or
super-low in your system), HIV acceleration (causing dementia, a disorder of the brain), and
risk behaviours (putting yourself at risk for physical or sexual assault, or at risk for other
infectious diseases) (Trisdale, 2004). IDUs with inadequate housing were twice as likely to
become at higher risk of contracting HIV (Strathdee, 1997). For people living with
HIV/AIDS, homelessness and unstable housing make it harder for them to pursue, receive,
and maintain their treatment. Moreover, when PLN is closed (i.e. weekends, evenings),
finding resources are difficult for people with HIV/AIDS who face poverty, homelessness,
and addictions.
In What Ways Is the Positive Prevention Program Addressing These Issues?
The staff said the PP addresses these issues by enabling people living with HIV/AIDS
to recognize how important their participation is and to get involved in the PP project. They
stated that PP attempts to offer these individuals a sense of accomplishment, confidence, and
a set of skills that they indentify and can apply to the rest of their lives because it would be

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the first time in a long time where they feel they are making a difference and contributing to
something important. For example, PP gives PLN members an outlet to tell their story and
let their voices be heard. Accordingly this should reduce some stigma and prejudice in the
community; being part of the program may inspire some members to "get straight," and for
example, find a home, quit drugs, remove negative people from their lives because they are
starting to realize their potential and that they deserve to be happy and healthy. Also being
part of the program will also offer some members a platform so they can advocate for their
rights: get support organizations to be open later hours and more often, get more affordable
housing, and increase harm reduction programs.
As an Employee at PLN, How Do You Engage with People Who Do Not Consider
Themselves to Be at Risk of Spreading HIV?
The process of engaging with members is complex and delicate. As one of the staff
describes it:
It is difficult to gain trust and have appropriate moments to have these
conversations. In having day to day conversations, you have the opportunity to
remind them the importance of protecting themselves from other STIs, and HCV.
In these conversations, you discuss various things such as harm reduction
strategies, in regards to sharing needles, sexual activity and healthier choices
overall with the hopes that they recognize that there is a risk. Helping them to
feel confident and secure in disclosing their status. Letting them know that HIV
is something you can live with but even with that, it is important to always be
aware of the risk for infection of others if precaution is not taken. I believe that
most of our members consider themselves to be at risk of spreading HIV. It's the

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choices they make around that understanding which are uncertain, depending on
their individual circumstances. HIV isn't only amongst "street people," it affects
a wide range of people. It is very important to emphasize that HIV has been
known no boundaries; thus, it is imperative to explain that people may not even
realize they have been contracted HIV (maybe just shared a needle once, did not
use a condom with a stranger, shared drug equipment etc.) then bring it home to
their community, family, friends. It is significant to indicate that at the statistics
in northern BC, we are only second to the Downtown Eastside (DTES) of
Vancouver with regards to HIV infection rates.
According to the staff member's statement, Aboriginal communities and health care
leaders, health planners, policy makers, and providers should recognize and focus on three
things. Firstly, HIV infection is not limited to larger urban centres. Secondly, meaningful,
ongoing, respectful engagement is needed. Thirdly, conventional health care services and
community programs lack sensitivity and the capacity to meet Aboriginal peoples' cultural
and health needs. PLN delivers enablement. Enablement is one of main leading initiatives of
health promotion practice highlighted in Ottawa Charter that is essentially interpersonal;
therefore, enabling others to increase control over their health requires good interpersonal
skills (Trussler & Marchand, 1997). This community based organization gives persons
living with HIV choices and interacts with PP participants in order to create a targeted
HIV/AIDS education and to develop a DVD that portrays their lives and features personal
accounts. Therefore, PLN and PP participants work together to prevent the spread of HIV
within Aboriginal and other vulnerable populations in the city of Prince George and northern
British Columbia; and provide mental/spiritual wellness program to promote self-esteem and

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strengthen decision making and support person living with HIV/AIDS in making healthy,
informed choices.
Experiences of Positive Living North Members
Thirteen PLN members were interviewed, and 12 participants completed the baseline
questionnaire between October 2008 and January 2009. The objective of the survey
questionnaire was to start the interview in a calm manner and allow participants to organize
their thoughts and feelings/information. Some people preferred to express themselves in a
written manner rather than to talk. Most of all, the survey helped me to find out whether the
participants had prerequisites for health, indicating peace of mind, earnings, shelter,
unwavering ecosystem, education, social justice, food, and equality. The demographic,
socio-economic, and health-related characteristics of participants are shown in Table 1.
Table 1. Profile of participants
Variable
Male
Female
Transgender
Two-spirited
Aboriginal peoples (self-identified)
Did not complete high school
Unstable housing
Positive HCV status
Ever taken from biological parent
Either biological parent ever attended residential school
Ever attempted suicide
Ever used injection drugs
Use injection and non-injection illegal drugs
Smoking and/or drinking
Duration of HIV status (years), median
Current methadone maintenance treatment
Ever sexually abused
Ever worked in sex trade
Criminal activities self-reported as "high/medium"
Drug use self-reported as "high"
Drug use self-reported as "medium"
Psychological status (self-reported):
Lonely

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PP Warriors(«P Non-Warriors («)
3
3
3
2
1
0
1
0
6
4
2
2
2
3
5
3
1
0
1
0
2
1
8
5
5
4
8
4
10.0
6.2
1
0
2
0
4
2
0
2
1
2
2
1
4

5

Unsafe
Hopeless
Thinking about suicide

3
3
0

3
4
2

Demographics
The demographic section was categorized by age, ethnicity, sex, marital status, and
number of children on the interview questionnaire. As evident in Table 1, participants were
predominantly young, First Nations, HIV positive, and intravenous drug users. Most of them
were in a common law relationship.
Housing. The majority of respondents are in housing that may be categorized as
tenuous. Five people stay at a shelter or the home of a relative or friend. Seven have moved
in the past year. Two people have no emergency contact; one person put the PLN as an
emergency contact. One participant said, "Sometimes home phone is useless if we are not
home; we don't own the answering machine to take a message from the clinics or hospital."
Therefore, it is important for many of the respondents to visit PLN because it functions as
communication centre: they can get phone messages/post mails or can make a long-distance
call to their relatives.
Socio-Economic Status
Socio-economic status is an important determinant of health. It is necessary to address
social vulnerability such as inadequate income and housing as an HIV risk factor.
Financially marginalized people with HIV face barriers of adhering to antiretroviral
treatment and receiving poor quality of health care. The data in Table 1 confirm that
participants in this study face major socio-economic challenges. Eight people (67%) did not
complete grade 12. Twelve participants depended on a long-term disability or income
assistance ($500-1500). Ten participants' income is below $20,000 year. Three from 12

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participants have a part time job at the Fire Pit: custodian ($300/month) or craftsperson ($60100/month).
Health Status
Five participants were infected with HIV outside of Prince George. Some participants
said they came to Prince George because they want to stay closely to their family. The
average duration of living with HIV status in people involved in the PP program was ten
years, but the duration of HIV infection for people not involved the program was six years.
PP Warriors felt their health was better than Non-Warriors because, by joining the PP
program, PP Warriors learn how important it is for them to keep track of their health status,
which leads them to be informed, knowledgeable, healthy, and empowered.
How knowledgeable of their disease and health status. None of the participants knew
how they were infected with HIV. One participant's girl friend did not tell him that she was
HIV positive; however, she did not want to share the spoon for drug use. At that time, the
participant did not understand why she acted that way.
The viral load test is helpful in diagnosis. The test can detect a viral load a few days
after HIV infection. In prognosis, viral load can help predict how long someone will stay
healthy. In prevention, viral load predicts how easy it is to transmit HIV to someone else.
Finally, in managing therapy, it helps seeing if antiretroviral drugs are controlling the virus
(AIDS. ORG., 2007). Four out of Five Non-Positive Prevention Warriors did not know what
their viral load was the first time s/he came to PLN and their viral load at the time of this
research. The viral load of three out of thirteen participants was undetectable. Lower viral
load is better and seems to mean a longer, healthier life. One participant said that people

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with HIV should have a responsibility: "if my viral load stays low, my chances of passing it
on stays low."
Description of how healthy participants are. Twelve participants respectively rated
their health above average (n=3), average (n=6), and poor («=3). One respondent who lives
with AIDS rated her health as average.
Addictions. It is common for the participants to have addiction problems such as
alcoholism and drug dependency that are tightly connected to crime and suicide. It is also
familiar to see in the Aboriginal community that two or three generations of family unit
contracted HIV through sharing needles (Stratton, 2008). Many experts attribute these
factors to earlier exposure to physical and sexual abuse (Stratton, 2008).
One out of twelve was not using street drugs (morphine, crack, opiate, cocaine, and
heroin), smoking, and drinking, which can weaken immune system. Seven were both using
street drugs and smoking (average one package per day): three out often were responded that
drug use is high; two out often rate their criminal activities as high or medium.
One respondent said "we have no problem accessing all the drugs [that] gangs can
think of." Another respondent said he smokes marijuana in order to counteract side effects
of HIV meds. Three out of the seven were also drinking. Only one person was identified
that s/he was in the methadone maintenance treatment. It is also common for the participants
to have co-infections that might be more challenging, serious or recurring in the future.
Seven participants who have hepatitis C (HCV) because they have used injection drug: they
might be sharing needles or other drug paraphernalia (includes cookers, cotton, spoons,
water, etc.).

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Equality
Accessing health care professions. Two out of twelve participants have no regular
access to a physician. Three participants out of twelve have no regular access to a specialist.
Those who have regular access to a physicians and a specialist were not satisfied with them
because lack of understanding and caring. One participant said that she is satisfied with her
doctor who is Native. Another said that his doctors provided lots of follow-ups. Another
participant shared this story about how unknowledgeable and uncompassionate health care
professions can be:
A nurse told me the first time [HIV status] I didn't figure what she is talking; I
blew off at the office; she thought I knew; doctor calmed me down; the way the
nurse represented it to me was unprofessional; she is a nurse; she set me down;
she read his chart; I didn't understand HIV positive; I am lost why you are telling
me; why not doctor [why] didn't [he] tell me; nothing mattered to me; [I thought]
my life is over.
When people received Disability Benefits II (DBII) benefits, they were eligible for
prescription drugs covered by BC Pharmacare and were entitled to have a monthly high
protein diet supplement [that is essential for survival] of $40 a month. However, applying
(e.g., paper work and eligible criteria) makes it even harder than before to qualify for a health
allowance: what was formerly a reasonably fast simple form for physicians to complete is
now "onerous and time consuming and sets the bar for eligibility very high" (Hillson, 2001).
Eight people said they had no medication allowance. Only three people (two PP Warriors
and one Non-Warrior) said they had medication allowance; one person did not respond.

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Accessing local community services. Participants said that they accessed local
community services for food, clothing, housing, counselling, legal problem, and hanging out.
These other services included other programs available at PLN, Central Interior Native
Health Society (CINHS), Fire Pit, St. Vincent de Paul drop-in centre, Salvation Army, Active
Support Against Poverty (A.S.A.P), Red Cross, Association Advocating for Women and
Children (AWAC), Porter House Food Box, Phoenix Transition House, Needle Exchange,
and Prince George New Hope Society (a street level support centre for women working the
street).
The PP program is unique in being culturally sensitive, recognizing the important role
people living with HIV can play in their community, and empowering people in the process
of maintain their health and well-being. A First Nations woman who herself survived an
abusive childhood and life on the streets told her story during the interview with me. When
she was raised by the White foster parents, she did not know she was "Indian" [term used by
participant] because she did not recognize different physical characteristics (e.g., skin color)
between her and her foster family; and she added, "At that time, I don't look ... like, Indian."
She went on to explain that, at the time, she felt she had lost her Aboriginal and cultural
identity. Furthermore, she was raped by the foster parents' son at a very early age. When
she told her foster mom about her son who did rape her, her foster mom said to her "Pull
your panty up" and did not believe her. She ran away and then entered prostitution, became
drug dependent, and began drinking.
PLN can be an advocate agency or good listener for the members: at the PP meeting on
Thursday, June 19, 2008, a participant said that her 17-year-old daughter did not want to talk
to/see her because her foster agency officer breached her confidentiality and told her that her

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mom is HIV positive. A participant had been waiting for five years for ankle surgery. I
asked her, "Did you call the doctor?" She said that she did not. I asked why. She responded
that she had bad experience with the nurses who were derogatory and provided substandard
care; "I complained about my pain, but they did not listen because I am Indian and they think
I faked my pain to get meds; that's why I did not want to go back to the hospital." However,
she had been helped by the Native Friendship Centre in order to communicate with health
care professionals. PLN staff advocated these occasions, and other PP participants also gave
emotional support.
Psychological Status
Loneliness. Nine respondents out of twelve felt lonely. First, dealing with the HIV
positive status is an emotional and sensitive experience, and many people living with HIV
encounter social stigma. Whenever disclosing her status, a female participant said that she
has experienced in denial and also is ashamed of herself. Family and friends have tried to
distance themselves from people with HIV. One respondent said that her friends and family
do not care or come by to see her often enough. Another respondent said he had "no one to
talk", and another said her family "treats her like dirt."
Many do not have family members living physically close to them. Strong family links
and supports can lead to help people living with HIV to maintain their well-being. None of
the participants who indicated they had children were actually living with their children at
the time of the research. I asked one participant why they did not go to visit his children. He
said, "If I want to see my daughter, I need money to get there." When a female respondent
was in jail or using illegal drugs or her boyfriend was in jail, she felt lonely. Another
respondent said, "I constantly feel that my struggle with AIDS has become feeling alone."

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Another participant said that Aboriginal gay people living with HIV were not
welcomed by their own community. A community member from Lake Babine territory said,
"If [people living with HIV] touch the moose or the salmon, we cannot eat it." The pp
members were doing a presentation and very gently educated him. At the end of the session,
he acknowledged his ignorance saying. "/ did not know these things [basic facts about HIV
and AIDS]" and he thanked them and said he would now be able to educate others out of
their ignorance.
Elders and a leader of the Aboriginal community did not want to know about
HIV/AIDS because these diseases are white people's diseases. The leader and his
community do not want a support society for drug users in their community. Thus, those
people have to drive to the centre to get support. An alcohol and drug counsellor from
northern BC told me that his counselling and support services for drug users were not
allowed in the Aboriginal community and community members (many of whom are teenaged
and/or unemployed) had to drive three km to get the support.
Unsafeness. Six participants felt unsafe. Comments included: "because of loneliness"
originated from stigma of the disease itself and "using drugs"; "when I am on the streets
alone" or "when someone threatens me" (physically unsafe due to unstable housing and
unsafe environment); "because simple things like cooking or sexual intercourse with partners
even though protected leave me feeling that I am unsafe" (a life-threatening disease HIV
impacts destructively on their ordinary routines); "because of sometimes being around
ignorant people"(lack of supports from their family and community).
Hopelessness. Seven participants felt hopeless and had a variety of reasons why they
felt this way: "sometimes because of her HIV status, which scares people; when he is

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incarcerated and I can't look after my partner and close friends; she is waiting for operation
two feet and one ankle for two years; because he can't move around (because of his injured
leg) and depends on other people; when he is broke; because there is no cure for HIV;
sometimes when her family does not give her positive look on life they think I will never
change ;because she has no one to help her at all times."
Thinking about suicide. Rates of suicide are two times greater among Aboriginal
populations than non-Aboriginal populations in Canada (Clarkson, 2008). However, suicidal
thoughts were not common amongst the participants in my research; for example, only two
participants, both Non-Warriors, reported having thoughts of suicide. Transient suicidal
thoughts are nevertheless common in people living with HIV. The risk of suicide is
especially high for people who are first learning about their positive HIV status and having to
deal with a number of stressful events all at once. These events include disclosing their
infection to family and friends; starting antiretroviral therapy; noticing the first symptoms;
having a decrease in CD4 counts; undergoing a major illness or hospitalization; receiving an
AIDS diagnosis; losing a job; experiencing major changes in lifestyle; isolating/being
abandoned by family, friends, or significant others; experiencing severe anxiety, depression,
or other mental health disorder; being stigmatized due to illness, sexual orientation,
substance use history; having relapse into drug use after significant recovery; and having
financial difficulty (AETC NRC, 2006).
One respondent said, "Some days are harder than others. When I was in the hospital
for 5 1/2 months, I went from HIV to AIDS and almost died of pneumonia twice." The other
who rated his self-esteem as low said, "I attempted suicide after I was HIV positive;
however, that was nine years ago, and I feel better now." One PP Warrior said at the time of

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this research that he does not ever think about suicide. He had attempted suicide on a
number of occasions in the past. He had been upset at the loss of fulltime employment
because he told a shop owner that he had acquired hepatitis C instead of telling the truth that
he is HIV positive. While the member brought pamphlets explaining that the disease cannot
affect the job, he was fired. His resulting depression led to drug abuse. He continued to say,
"I have no energy; so, I am depressed about that and I thought, I am failure because I cannot
do it anymore [I cannot keep my career]. I know how to do it but I don't have energy for it
[because of my feeble body]. I felt useless." He paused and said, "Before getting infected
with HIV, I was very confident of my job and proud of having the job; however, I was forced
to quit my job because of my HIV status and did not believe I was living a life." We can see
how he developed problems of drug addiction and drinking as an escape from his social
circumstances.
Coping mechanism. PLN individuals continue to cope with the fear and stigma of HIV
on a daily basis. They are living with HIV/AIDS instead of thinking of dying. The
participants coped with this in a variety of ways. These included being with, or talking to
family and doctor; by talking to God; by disassociating with that feeling; by taking a walk
one hour; by counselling at PLN; by writing in a journal, talking to support workers, writing
poetry or thinking of family/children. The majority of participants rated their
communication skills, relationship skills, and self-esteem as "medium". Unfortunately, two
participants missed this part of the questionnaire. The results are shown in figure 2. The
sample size is not sufficient to compare PP Warriors and Non-Warriors.

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Figure 2. How Participants Rated Their Interpersonal Skills and Self-esteem

Relationship
Skill
0%
^ ^

Communication
Skill

Self-esteem
10%

20%
• high

__^Jj||W

• medium

^ ^ ^ ^ ^

low

^ ^
30% ^ ^ k
^^^^^B

•
• medium

^^^^H^T

low

J H H

• medium

^^^^w

low

Staff and Participant Support for Harm Reduction Approaches
The PLN Participants (PP Warriors and Non-Warriors) and Staff who participated in
this study believe that Harm Reduction approaches are suitable for meeting the challenges of
HIV prevention in Prince George, including the special circumstances of Aboriginal persons
living with HIV. PLN staff and participants have adopted and utilized the principles of Harm
Reduction. PLN Client Services manager Mr. Steve Lorenz said, "We consider the services
that we provide at PLN [including Positive Prevention] as part of the harm reduction
continuum." For these individuals, a critical feature of the Positive Prevention program that
is locally designed and driven by people with HIV/AIDS who live close to the street and who
struggle with addictions discrimination, racism, poverty, lack of family and cultural supports,
and mental health issues.
Prohibiting all drug use is only one way to reduce harm from drug addiction.
However, harms can be reduced in the population who continue to use drugs in spite of
criminal sanctions. This is important to understand because addiction is not just a criminal
justice problem; it is also a public health issue. There is a continuum of drug use from
problematic to non-problematic. Harm reduction recognises this continuum and sets out to
meet people wherever they may be placed on that continuum. Harm reduction is secondary

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prevention that helps to reduce negative consequences of drug use, such as overdoses, deaths,
HCV, HIV/AIDS, and crime. As one service provider said: "Let's keep them alive long
enough to make choices to change."
There are several tools for promoting harm reduction, such as distributing and
instructing in the right use of condoms, distributing and encouraging the use of clean needles
and crack pipe mouth pieces and providing methadone, heroin, and stimulant maintenance
treatments. Participating in a harm reduction program encourages healthier behaviours and
taking greater responsibility for personal choices.
Increased social connections also lead to trust and willingness to engage with services
further along the continuum. Street involved people listen to those people who live with HIV
in a different way on street trust, not street impact. Positive prevention (PP) Warriors came
to understand that open and non-judgemental attitude was necessary to reach the vulnerable
group. At the Positive Prevention meeting, on Thursday, April 29, 2008, a participant
strongly asserted, "Be clean or die if it isn't HIV that kills us." PP Warriors know very well
IDU is a major factor for having infectious diseases, HCV and HIV, and that it is not helpful
to maintaining their quality of life. At one PP meeting, a participant advised that when
people found HIV the first time, they should think that it is not the end of the world. People
living with HIV who are supported can become front line warriors in HIV prevention. One
PP Warrior asserted that we should do more to reach people where they live (e.g., streets,
reserves) in order to help them take charge of their life. One PP Warrior shared a story to
illustrate how harm reduction and positive prevention empower participants to prevent HIV
transmission. This Warrior was asked by a young man in a back alley downtown Prince
George, "Do you have a rig?" The Warrior replied, "I am HIV, so I can't share it with you."

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Later the young man came back and said "Thanks man for not sharing the rig." Involvement
by individuals infected and affected by HIV/AIDS is very significant because they know
what they are going through as being a person living with HIV and talking about and finally
how to talk to those who may not know they are risk of infection.
At the PP meeting, on Thursday, July 17, 2008, an Aboriginal participant said proudly,
"We really want to get out to First Nations communities and get into their schools and talk
about HIV and AIDS. Many youngsters could get educated about how to prevent HIV,
making the right choices, and when they do get into a situation, or if they ever get into a
situation, they can say 'No.'" One warrior responded that "travelling to other community and
being there, but not educating them." This means that PLN staff and PP Warriors visit other
reserves not to give consultation and/or education: "Here is the problem, here is the solution.
Do you have any comments?" (Tabobondung, 2007) Instead, they want to have engagement:
they explain the problem and encourage people to involve themselves in appreciating the
problem, perhaps redefining the problem, and producing the solutions to the problem. This
is a way of empowering both people living with HIV and their community. The strategy of
opening doors to discussion and asking audiences question is a catalyst of storytelling.

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~ Chapter 5 ~
DISCUSSION
What is the PP program achieving?
First, the PP project gives people living with HIV/AIDS a voice to share ideas of
preventive activities, and how these activities have wide benefits. One PP warrior indicated
that people living with HIV lack access to the evidence based programs and care because of
the government's ineffective selection of interventions, combined with the general public's
stereotypes of Aboriginal peoples. One day at the PLN meeting, I told a story about how a
university student asked me "Why Aboriginal peoples can't forget about the past history;
why we have to take care of homeless people, for example, paying for HIV people's
medication?" T. (a PP Warrior) responded gently, "If we don't get medication, we will go to
the hospital more often, which costs you even more tax money. The government pays $1300
for meds per month; why doesn't it fund this PP? We have medication but don't have a
place to stay or store meds, which causes us to miss our dosage. Instead of paying $1300 for
meds, why doesn't government pay for this PP? This way is much cheaper."
Second, PP empowers peoples living with HIV and their support providers to challenge
expectations and to understand and accept diversity in harm reduction and prevention efforts.
During our meeting on September, 25, 2008, Dr. Healy was helping the group make their
own digital story. They were designing their script and story board by acting out interviews.
She asked, "What did you feel like when you found out that you are HIV positive? " The last
participant to speak said that he felt "awesome. " Everyone was stunned and thought that
they must have misunderstood. She asked "Did you say awesome? " And he said, "Yes."
He went on to say that when he found out he was HIV, he told the man who had been raping
him daily. The man never touched him again. He was only 14 when this happened. But, he

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was seen as the bad kid on the reserve. In reality he was not. He told us that he remembered
he was raped so hard that he could not walk because his buttocks were so sore. He
remembered vividly what it felt like walking to school in pain. This man, C, has been living
with HIV over 20 years now, clean, and sober. He has a son who is HIV free. He educates
others on the dangers of HIV and substance abuse. He and the Positive Prevention Group are
an amazing testament to the human spirit. We think the story of C and the Positive
Prevention Group needs a story that speaks at the same powerful level as they do.
The stories shared by Warriors accentuate the importance of acknowledging the role of
historical trauma in the health of Aboriginal peoples. The PP approach pays special attention
to local cultural beliefs, customs, and community opinions. Aboriginal populations in
northern BC are more likely to engage in high risk behaviour of transmitting HIV/AIDS and
HCV. These people are heavily burdened with emotional trauma as a result of historical and
ongoing colonial processes. These commonly came from the multigenerational effects of
residential and boarding school system causing intergenerational effects of maltreatment and
familial destruction; racial discrimination; poverty affecting socio-economic conditions
disproportionately; and incompatible value systems between Aboriginal and non-Aboriginal
people that have moved from dependence on family and community to external sources (e.g.,
social workers, foster homes, courts, and schools). Kevin Barlow, Chief Executive Officer
of the Canadian Aboriginal AIDS Network in Ottawa says, "Some Aboriginal peoples who
were physically and sexually abused use alcohol and drugs to numb that pain" (Stratton,
2008, p.7) because people with HIV chose to feel its immediate effects before they are
thinking about the possible consequences8. However, policy makers, practitioners, and
researchers should recognize such strengths in the Aboriginal individuals having courage and

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tenacity when undertaking the withdrawal management of addictions. Positive Prevention
efforts have focused on helping people with HIV avoid spreading HIV to others and reducing
the number of HIV positive people who are unaware of their infection.
The PP program functions as a behavioural intervention to minimize risky behaviour
and provides a best practice and practical arena of the harm reduction model. PLN staff and
PP participants strongly believe that it is important for the public to acknowledge that harm
reduction practice as well as involvements and dedication of those people living with HIV
can improve local understanding and implementation of service. It is important that those
who care for people with HIV/AIDS should keep on top of HIV. What do health care
workers need to learn from this study? One participant said to Dr. Healy, "IDUers aren't
going to listen to you [they want to listen to us in similar circumstances] because you are just
another white girl from the university." Compassion and sensitivity, especially towards
persons of Aboriginal identity, are critical qualities for those caring for persons with
HIV/AIDS. Positive Prevention should help increase awareness and understanding amongst
health care practitioners, as well as the wider public, by drawing attention to the many
challenges facing people living with HIV. Finally, it is hoped that PP contributes in wider
efforts to change common stereotypes about HIV/AIDS and persons living with these
conditions.
Participatory action research (PAR) is an effective means of making society aware of
the feelings and the thoughts of people living HIV. The purpose of this study was not to
determine better ways for Positive Living North to operate, but rather to foster a deeper
understanding of how this particular program tries to reach people living with HIV and work
with these individuals not only to prevent the spread of HIV but also to maintain and enhance

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their quality of life. PAR challenges traditional research dynamics: that is, the researcher
becomes the learner, and the participants are the experts. I do not suggest that PAR is the
only form of qualitative research that allows researchers to learn from participants. With
PAR arguably more so than other methods, however, participants are regarded as coresearchers and co-creators of empowering stories.
PAR has four key values: "empowerment; supportive relationships; social learning;
and social change" (Bostock & Freeman, 2003; Nelson, Ochocka, Griffin, & Lord, 1998;
Whyte, 1991; as cited in Radermacher & Sonn, 2007, p.63). In this study, participants were
empowered through the building of relationships and supportive structures to fostering
learning and change. During PP meetings, Warriors shared their experiences and wisdom,
and their collective voices are the foundation of this thesis research. Moreover, in
developing processes of critical reflection, I need to address two key questions that French
and Swain (2004) suggest: "'[f]he first question is: does the research address the concerns of
[people living with HrV] themselves? Second, does the research promote [the] people's
control over the decision making processes which shape their lives?'" (As cited in
Radermacher & Sonn, 2007, p.71) I do not have sufficient data or evidence yet to confirm
that either question has been adequately addressed. By presenting preliminary results to staff
and participants at PLN in January 2010,1 feel I have taken important first steps in verifying
that my research addresses the concerns of the participants themselves, and in helping
promote empowerment of the participants in this study. The reporting of preliminary
findings provided an opportunity for open discussion of realistic, achievable project goals
that are responsive to the needs of a marginalized community. I am committed to present the

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finished thesis to members and staff in the hopes that the organization and its members can
make use of the findings to continue the important work underway at PLN.
A major challenge in applying harm reduction initiatives as a public health approach is
the negative ethical assessment attached to those who appear to have no control over their
substance abuse. To help improve living conditions of people living with HIV/AIDS and
promote behavioural change, holistic and humanistic harm reduction approaches provide a
range of alternatives for users (e.g., offers empowerment and responsibility), front line
workers, law enforcement officers and others dealing with drug-related problems. For
example, police can have the choice of diverting users to alternative community-based
measures; physicians can offer a variety of treatment options such as drug substitution, drug
maintenance, and interventions that adopt safer methods of use. In this way, those in
positions of authority can be better informed on HIV issues to prevent prejudices about the
concept of the harm reduction approach and the disease itself.
People with HIV/AIDS are human beings who have feelings and needs that, as is too
often the case, especially for Aboriginal people, are overlooked or else ignored outright.
"The power to feel is a gift. We need to feel in-relation to others," is from a poem by Fyre
Jean Graveline. Likewise, the power to understand is a gift; those in a position to design and
deliver health promotion activities need to understand in-relation to other human beings.

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~ Chapter 6 ~
~ CONCLUSION ~
Does Positive Prevention empower people living with HIV to improve their health and
quality of life? The evidence from this study suggests that it does. The PP project has made
an important contribution to increasing the knowledge and prevention of HIV by improving
access to and the quality of treatment, and the creation of community-based organizations
and networks of people living with HIV. The PP program uses a combination of strategies
such as harm reduction, contacts with community agencies, street outreach, and peer
programs to meet participants where they are at in their lives. Education and communication
are key factors leading PP members to achieve self-awareness and self-esteem. The program
is also a means to educate the wider community and different levels of government about the
importance of supporting the needs of those living with HIV/AIDS so that PP Warriors make
a difference in slowing the spread of HIV transmission.
The higher proportion of HIV positive test reports attributed to IDU among Aboriginal
communities, especially in northern BC (Canadian Aboriginal AIDS Network, 2003), is a
major and continuing public health concern (PHAC, 2007). The reason is that Aboriginal
peoples are very mobile, so that they can go into cities and come back to their remote home
communities. Moreover, Aboriginal peoples are often not well served by health care because
these people living with HIV face stigma and discrimination, co-infection, continuous
substance abuse, inadequate living conditions, poor quality of healthcare, absent
empowerment, and prejudice about harm reduction. This creates barriers to HIV prevention
and treatment, and shows there is a need for harm reduction programs such as Positive
Prevention.

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What are the practical considerations of my research for those delivering programs
such as Positive Prevention? Researchers should respect four key values of PAR when
recognizing that PAR is community based and cultural-sensitive research. Researchers
should learn from the experience of a participant's well-being, so that s/he can articulate
his/her position to connect between people living with HIV and people of public health
practice, policy, future research for developing prevention measures, maintaining knowledge
informed and updated, and reaching individuals who frequently have other challenges
associated with drug dependency, mental illness, limited education, and unsteady housing.
Since this research was conducted, the Positive Prevention program has experienced
greater uptake amongst PLN members, and there are now additional opportunities for
exploratory and evaluative study of the program. What are my suggestions for future
research into these types of programs? For a future researcher, s/he needs to commit his/her
time to developing collaborative relationship with the organizational staff and participants,
which PAR requires. A researcher's behaviour should be consistent and sincere.
Participation in the PP project with a 'blank slate' led to confusion for PP participants and
PLN, and gave the impression that we had no agenda. Therefore, the researcher's
plan/objective should be clearly presented to the participants and the organization. The PAR
process is owned and shared by the participants. Future researcher should work on
promoting genuine participation from participants.
What sorts of policy implications does my research raise? My research suggests that
there has been little attention paid to the meanings and experiences of people living with
HIV. Thus, my objective is to learn from the voices and stories of people living with

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HIV/AIDS participating in PP project; and whether and in what ways the PP project responds
to their needs.
My study also suggests that people living with HIV have a lack of access to evidencebased HIV prevention and care; thus, they need collective combination initiatives (e.g.,
biomedical, behavioural, and structural approaches). Furthermore, policy makers face
challenges of effective control and implementation of interventions and treatments and ever
more recognition of the need for rigorous evaluation of development programs for
HIV/AIDS because they are short of reliable evidence to guide the selection of interventions
and to evaluate the effectiveness and the cost of interventions of care and treatment for
HIV/AIDS. Few evaluations have collected data specifically on HIV infection as an
outcome (Fleming & DeMets, 1996). Likewise, there is a lack of contextual data, which is
indispensable for properly adjusting interventions to the diverse regional settings and the
innumerable small/isolated environments in which HIV transmission happens (Grassly et al.,
2001). Attention to context is also decisive for adopting strategies to fight HIV/AIDS-related
stigma and restrictive social and gender norms, which often discourage efforts to tackle
sexual and addictive behaviours associated with HIV transmission (Bertozzi et al., 2006).
The allocation of resources for HIV/AIDS prevention is seldom evidence based, primarily
owing to a lack of data on both the effectiveness and the cost of interventions (Feachem,
2004).
What should health authorities and provincial Ministries of Health learn from my
research? Dealing with HIV prevention and care is a very complex issue owing to stigma
and discrimination. Interventions aimed at preventing the spread of HIV should be based on
a principle of least invasive, most helpful to maintain health and human rights. Health

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authorities should not only invest money on biomedical measures but also show their
compassionate commitment by listening to what people living with HIV need. My research
calls for more realistic and scientifically sound strategies (i.e., drug policies) to support HIV
prevention for people who use drugs. Although harm reduction intervention has brought the
controversy, it has helped prevention and treatment for communicable diseases and has led to
more research on how our society realizes a harm reduction approach is realistic and shows a
responsible attitude to HIV/AIDS. Future study should focus on developing creative tools to
evaluate the effectiveness of PP and harm reduction programs to ensure cost-effectiveness,
but also to emphasize the importance of respecting individuals living with HIV and
empowering them to increase their chances to maximize their health.

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Endnotes
1. The Northern Health is divided into three operational areas called Health Service
Delivery Areas (HSDAs): the Northeast, the Northern Interior, and the Northwest.
This structure helps to provide a greater degree of local operation and decisionmaking for health facilities across Northern British Columbia.
2. Aboriginal peoples refers to the Indian, Inuit, and Metis peoples of Canada, who are
organic political, and cultural entities that originate historically from the first peoples
of North America, rather than groups of persons united by racial characteristics
(Matiation, 1999).
3. Welfare Wednesday is a term that refers to the day of the month when the British
Columbia Ministry of Human Resources distributes welfare cheques to qualified
recipients. This usually occurs on the last Wednesday of each month (Li, Sun, Marsh,
& Anis, 2007). On the days commencing with "Welfare Wednesday," the level of
substance use in the marginalized population escalates and decreases in collaboration
with the payment of social benefits.
4. From 1845 to 1969, the Canadian government wanted to assimilate Aboriginal people
by offering their children a Christian education; teaching them English or French; and
against their will removing them from their homes, families, cultures, languages, and
traditions. Legitimately, residential schools ran in Canada from 1892 until 1969
(Boyer, 2004 a).
5. Methadone "is an orally-administered, long-acting synthetic opioid that is prescribed
to IDUs who are addicted to heroin and/or other opioids in order to block the

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euphoric effects of the drug and allow for gradual addiction withdrawal" (Canadian
Aboriginal AIDS Network, 1998, p. 42).
6. HIV health promotion defines any strategy that enables people to increase their
control of conditions affecting HIV/AIDS (Trussler & Marchand, 1997).
7. What are the risk factors for HIV Transmission? According to Centers for Disease
Control and Prevention (CDC) (2008), you may be at increased risk for infection if
you have:
•

injected drugs or steroids, during which equipment (such as needles, syringes,
cotton, water) and blood were shared with others

•

had unprotected vaginal, anal, or oral sex (that is, sex without using condoms)
with men who have sex with men, multiple partners, or anonymous partners

•

exchanged sex for drugs or money

•

been given a diagnosis of, or been treated for, hepatitis, tuberculosis (TB), or a
sexually transmitted disease (STD) such as syphilis

•

received a blood transfusion or clotting factor during 1978-1985

•

had unprotected sex with someone who has any of the risk factors listed above

8. What are possible consequences of HIV/AIDS?
1) First, the most obvious costs associated with HIV are the costs for treating those
with AIDS, as well as the costs of preventing the development of AIDS in those
who are HIV positive. Antiretroviral treatment can prevent AIDS as long as the
drugs are taken regularly (World Bank report, 2002). However, the combination
of drugs necessary to be effective is expensive and comes to about USD 9000 per

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patient per year: the average cost is CAD 10,878 per person annually in Ontario
(Palmer & McMurpchy, 1998).
2) Second, people with a positive HIV diagnosis are at high risk for mental health
problems, especially depression and anxiety due to changes in work status, the
experience of acute illnesses, adherence to complicated medication regimes, and
no social support systems when they are most required (because HIV disease is
extremely stigmatizing) (Scheid, 2005).

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Appendix A: Triangulation of Research, Harm Reduction and Disease Prevention

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Appendix B: UNBC Research Ethics Board Approval

UNIVERSITY OF NORTHERN BRITISH COLUMBIA
RESEARCH ETHICS BOARD

MEMORANDUM
To:

Jiwon Slotwinski

From:

Henry Harder, Chair
Research Ethics Board

Date:

October 14, 2008

Re:

E2008.0918.147
Implementation of positive prevention at Positive Living North in Prince
George, BC that empowers people living with HIV to improve their health
and quality of life

Thank you for submitting the above-noted proposal and requested amendments to the
Research Ethics Board. Your proposal has been approved.
We are pleased to issue approval for the above named study for a period of 12 months from
the date of this letter. Continuation beyond that date will require further review and renewal
of REB approval. Any changes or amendments to the protocol or consent form must be
approved by the Research Ethics Board.
Good luck with your research.
Sincerely,

Henry Harder

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Appendix C: Interview Guide
Interview Questions for the Clients at the Positive Living North
Interview #:
Time & place of interview:
Name:
Demographics
Age:
Community:
Ethnicity:
Gender:
Source of income:
Relationship status: Single • married Q common law • dating D
How many children?
Housing: (pleaseput an x by all that apply)
Shelter •

One room walk up • Apartment a

Stay with friends a

No regular home •

How many times have you moved in the past year?
Emergency contact information:
Socio-economic status
What grade did you complete?
Employment status: (pleaseput an x by all that apply)
Part time a

Full time •

On Income Assistance •

Income level: (pleaseput an x by the one that applies)
Below 20,000 /year • 20-40,000 /year •
Health Status

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On disability •

When were you diagnosed that you are HIV positive?
What was your viral load the first time you came to PLN?
What is your viral load now?
What is the type of disability?
How do you rate your health? (please put an x by one response)
Poor

a

Do you smoke?

average

a

YES •

NO •

above average •

If yes how many a day?
Do you drink?

YES •

NO n

If yes how many drinks do you have a day?
Do you do street drugs? YES o

NO D

If yes which ones?
Do you have any other co infections or chronic diseases? YES

a NO a

If yes which ones?
Equality
Do you have regular access to a physician? YES

• NO •

Are you satisfied with your physician?

YES

• NO •

If yes why? If No, why not?
Do you have regular access to a specialist? YES •
Are you satisfied with your specialist?

NO a

YES

• NO •

If yes why? If No, why not?
Do you have any medication allowance?

YES

a NO a

Which local community services do you access: (please name)

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What services do you receive from them?

Are there services you need that are not provided locally?

Psychological status
Do you ever feel lonely? YES

a NO a

If yes, can you tell us why?

Do you ever feel unsafe? YES

NO

If yes can you tell us when and why?

Do you ever feel hopeless? YES

• NO

•

If yes can you tell us when and why?

Do you ever think about suicide? YES

n NO a

If yes can you tell us when and why?

Can you tell us how you cope with these feelings?

How would you rate your involvements, for the past year in these issues?
(Please put an x by all that apply)

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•

Criminal activities:

low a

medium D

high a

•

Drug use:

low a

medium •

high a

Communication skills:

low •

medium a

high o

Relationship skills:

low •

medium •

high •

Self-esteem:

low a

medium a

high a

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Appendix D: Interview Questions for PLN Employees
Survey Questions for Positive Living North Employees
1. What do you perceive to be barriers to awareness and prevention amongst PLN clients?

2. What does positive prevention mean to you?

3. How do you see the positive prevention program helping PLN members? The staff? The
programs?

4. What issues are critical to PLN members living with HIV?

5. In what ways is the positive prevention program addressing these issues?

6. As an employee at PLN, how do you engage with people who do not consider themselves
to be at risk of spreading HIV?

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Appendix E: Confidentiality and Privacy - Positive Prevention Project

Positive Living North: No kheyoh t'sih'en t'sehena Society

"We are the warriors on the front line of the fight against this disease. Support us and you
support the fight"
Confidentiality and Privacy - Positive Prevention Project

We agree that what is said in the room stays in the room except:

We will share information that is important to helping people outside this group understand
HIV and HCV, and what it is like to live with these conditions but we will not share personal
information about people.

We will not divulge information about each other's health status.

We agree that people have the right to choose not to participate or share their information
inside the group or outside of it.

This does not apply to legal things that have to be shared - like threats to harm people or to
children or to harm oneself.

I

(member) have read, understand and

agree with the above statements.
Member's Signature:
Date:

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Appendix F: Member Services Code of Conduct
Positive Living North: No kheyoh t'sih'en t'sehena Society

"We are the warriors on the front line of the fight against this disease. Support us and you support
the fight"

/%r\

Member Services Code of Conduct

The following document outlines the expected behaviour of members at Positive Living North.
•

Absolutely no abusive language/bashing of any other member, staff or volunteer on PLN
property

•

You must respect all other cultures, customs, ethnicities, sexual orientation, gender etc...

•

Absolutely no physical violence towards another person while on PLN property will be tolerated

•

No illegal or criminal activity (including drug use)

•

Must respect fellow member's right to confidentiality. Will not disclose the identity of persons
any persons who access service at PLN

•

No cross talk during the member/support meeting at all! Please respect others when they have the
floor.

I

(member) have read, understand and agree with

the above statements.

Member's Signature:

Date:

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Appendix G Informed Consent
INFORMED CONSENT
Does Positive Prevention Empower People Living with HIV to Improve their Health and Quality of Life?
I understand that I have been asked to be in a research study for the purposes of completing a thesis in at the
University of Northern British Columbia (UNBC) This study concerns the meanings and experiences of a
health promotion and harm reduction program for people living with HIV I was chosen to be a part of this
study as I have accessed services with the Positive Living North in Prince George, B C
I understand that the research interviews will be recorded and that the researcher will be taking notes
throughout the interview I understand that these recordings will be stored at the researcher's office of the
UNBC until a final approval of the researcher's thesis After completing the transcripts of interviews, the
digital tape recording interviews will be destroyed I also understand that any answers I give will be held in
confidence outside of any requirements of the study
I have received a copy of the attached information sheet I have had an opportunity to ask questions and discuss
this study
I understand the benefits and risks involved in participating in this study I understand that I can access free
counselling services if I require debriefing I understand that I am committing time to share my experiences of
with the researcher
I understand that the information that I provide will be confidential and that my name and any identifying
features will not be attached to it I have given my consent freely and I understand that I can withdraw from the
research process at any time I understand that I do not need to provide a reason for withdrawal and that I will
still receive the honoraria
I understand that if I have any comments or concerns, I can contact the Office of Research at the University of
Northern British Columbia at 250 960 5820 or the researcher at 250 277 1100 ext 7922
I hereby waive any claim against Neil Hanlon (PhD), supervisor, Jiwon Slotwinski, Graduate Student
Researcher and the University of Northern British Columbia with respect to the use of said information,
provided it is used in accordance with this agreement
This study was explained to me by
I agree to take part in this study

Signature of Participant

date

Printed name of Participant

date

I believe that the person signing this form understands what is involved in the study and voluntarily agrees to
participate

Signature of Researcher

date

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Appendix H: Information on Research Project
Information on Research Project
Title of Research: Does Positive Prevention Empower People Living with HIV to
Improve their Health and Quality of Life?
Investigator: Jiwon Slotwinski, candidate of MSc, Community Health Science, University
of Northern British Columbia.
Supervisor: Neil Hanlon, PhD, Geography, University of Northern British Columbia.
Hello: You are being asked contribute to a research study on the experiences of those
living with HIV/AIDS, substance abuse, homelessness or poverty. You have been asked
to participate because you have been identified as someone with expertise and
knowledge on this topic. To participate, you must understand and agree to the
following before we may proceed with the interview.
The purpose of this research is to explore the quality of life and health and the experiences of
inequalities in health status faced by Aboriginal peoples living with HIV. We will conduct a
face to face, one on one interview at a location where you are comfortable.
The interview will be taped but your responses will be kept strictly confidential. The tapes
will be transcribed and the original tape erased once the transcript has been verified. This
study does not ask for your name or any type of contact information. All your responses will
be used for research purposes only. Your name will not be associated with any report of the
research findings. All the transcripts will be kept in a password protected folder on the
UNBC mainframe computer. Only the researcher and her supervisor will have full access to
these files and her committee, should they request this as part of a process for the verification
of findings.
As part of the research, you will be given, if you like, an opportunity to review the transcripts
of your interview and discuss the findings. Copies of final results of the study will also be
made available to you at your request.
Participation in this study will require about 2 hours per session, and you will receive a $ 30
honorarium as a thank you gift for your contributions. Your participation in this study is
voluntary. You do not have to be in this study if you don't want to be. You have the right to
change your mind and withdraw from the research at any time without giving any reason,
and without penalty. You can also refuse to answer any question.
There are no known serious risks to this kind of research. In fact, many people find the
interview learning and affirming experience. However, the interview may raise unpleasant
or unhappy memories. If this should happen, we will stop the interview (with no financial

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penalty) and we will have counsellors and support people on call to support you. The benefits
to the research will be your valuable information that will contribute towards building the
case for the inclusion of Aboriginal HIV+ people in prevention, education and awareness
work.
You have rights as a research volunteer. If you have any questions about the research or your
participation, feel free to contact Jiwon Slotwinski at 562-1172; slotwin@unbc.ca, or Dr.
Neil Hanlon at 960-5881.
If you have any concerns about your rights as a study participant, or are dissatisfied at any
time with any aspect of this study, you may contact—anonymously, if you wish— Dr Henry
Harder (960-6506; harderh@unbc.ca) Chair, UNBC Research Ethics Board, or Debbie Krebs
(960-5650; krcbsd(£>unbc.ca) Administrative Assistant to the Office of the Research & REB
Recording Secretary.
Your participation and contributions are most important, and we hope you will consent to
participate.
Please sign below if you agree to participate.

I have reviewed this form with the researcher. My signature (or verbal acknowledgement on
tape) indicates my willingness to proceed.

Signature:

Date:

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