The Experience of Active Injection Drug Use on Adherence to Antiretroviral Treatment in Aboriginal
People Living in Prince George - A Qualitative Perspective
By
Robert Sam Milligan RN BSN

Thesis Submitted in Partial Fulfillment of
The Requirements for the Degree of
Masters of Science
In
Community Health Science

The University of Northern British Columbia
April 2011

© Robert Sam Milligan, 2011

1*1

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11

Abstract
In Canada the incidence rates of HIV in Aboriginal populations continue to grow.
Reasons for the increased Aboriginal HIV incidence are varied including structural components
such as socio-economic issues, and limited access to healthcare. The purpose of this study is to
gain insight into how active injection drug use impacts adherence to antiretroviral treatment in
Aboriginal people living in Prince George, British Columbia. Analysis revealed that healthcare
providers need to me more caring and consistent in their approach. Adherence is facilitated by
the knowledge of the health consequences of non-adherence; trust in healthcare providers;
incorporating HAART into daily routines; receiving support from AIDS services organizations,
and that combining HAART administration with methadone is an effective pathway to increase
adherence. The most common barrier to adherence identified by the participants was "being
high ". Finally the study found that the majority of participants expressed a feeling of
disconnection from Aboriginal culture.

in

T A B L E OF C O N T E N T S

Abstract

ii

Table of Content

iii

Acknowledgements

V

Chapter One: Introduction
Rational for research project

p.l
p1

Chapter Two: Review of Literature
Introduction
Literature review
Global Epidemiology of HIV
Canadian Epidemiology of HIV
Demographics and HIV epidemiology of Canada's Aboriginal People
Highly Active Antiretroviral Therapy (HAART)
Adherence to HAART
People who use Injection Drugs
Aboriginal people
Aboriginal people who use Injection drugs
Barriers to accessing healthcare among Aboriginal people
Provision of culturally safety
Assessment of medical conditions
Direct care provision
Counselling and referral services
Defining the knowledge gap in literature

p.3
p3
p4
p4
p4
p4
p8
p9
p 10
p 14
p 16
p 16
p 18
p 19
p 19
p 20
p 20

Chapter Three: Methodology
Introduction
Locating Myself in Aboriginal Research
Positioning statement of Robert Sam Milhgan
Theoretical Framework
Methods
Sample
Participant Profiles
Data collection methods
Analysis phase
Open coding
Axial coding
Selective coding
Ethical Controls
Gatekeeper
Ethics permission
Informed consent
Confidentiality
Validity
Limitations of the lescarch pioject

p.22
p 22
p 22
p 23
p 28
p 30
p 30
p 31
p 32
p 34
p 34
p 35
p 36
p 36
p 36
p 37
p 37
p 37
p 38
p 39

IV

Chapter Four: Results -Participant Responses to Questions
Introduction
Demographics of Prince George
Interview Results
Living with HIV and injection drug use
HIV treatment
Aboriginal traditions
Conclusion

p.41
p41
p 41
p 44
p 44
p 45
p 49
p 51

Chapter Five: Discussion of the Findings
Introduction
Living with HIV and active injection drug use
HIV treatment
The importance of treating HIV
Enablcrs/facilitators of HAART
Fear of consequences
Trust in Healthcare providers'
Daily routines
Support from AIDS services organizations, family & friends
Barriers to taking HAART
Being high
Physical location of HAART
Making supports for HIV treatment work better
Care providers need to be more caring
Aboriginal traditions
Reconnection to traditional Aboriginal practices
Conclusion

p.52
p 52
p 52
p 53
p 54
p 56
p 56
p 60
p 61
p 65
p 66
p 66
p 69
p 71
p 72
p 75
p 76
p 81

Chapter Six: Summary, Conclusions and Implications
Summary of the Research Study
Conclusion
Recommendations
Promoting the reconnection to Aboriginal culture
Holistic view of healthcare practices
Designing healthcare related interventions

p.83
p 83
p 84
p 84
p 85
p 85
p 86

References

p 88

Appendix A

p 104

Appendix B

p 105

V

Acknowledgements
It is with great pleasure that I extend my gratitude to the many people who have made
this thesis a successful adventure. First and foremost, I would like to thank my supervisor, Dr.
Josee Lavoie for her enthusiasm, sense of curiosity, consistent words of encouragement,
willingness to adapt to my ever changing life priorities, and patience in overseeing this work. I
am very grateful for the contributions and knowledge provided by my committee members, Dr.
Henry Harder, Dr. Tina Fraser, and Dr. Robert Hogg. I am appreciative of the staff at Central
Interior Native Health Society for all their teachings and moral support throughout the course
work section of my masters and the writing of this thesis. Special thanks to the coding team of
Jane Inyallie, Louise Creyke, and Lynette Lafontaine. I am indebted to the research participants,
who provided valuable and very personal insight into their lives which allowed me to grow not
only as a nurse and researcher, but also as a human being - thank you for teaching me to
recognize the value of friendship and the meaning of 'caring'. Specials thanks to participants 009
and 007 who moved onto another 'circle' before they had a chance to read the final results - you
showed an inner strength and wisdom that I cannot fully articulate. I owe a great deal of thanks
to my friends who have navigated the academic field before me - without your trail blazing I
never would have had the courage to take the plunge. I would like to thank my parents for their
endless support and unconditional trust that I would eventually get a "real" job. Finally, I would
like to thank my partner, Devi Milligan, for her unparalleled support, love and patience while I
was relearning basic grammar, punctuation and the correct usage of than and then. Devi you
have given me a life of happiness, a beautiful child, and a future brighter than I could ever have
imagined. It is to you I dedicate this thesis.

1
Chapter 1: Introduction
Rationale for Research Project
In the early years of the HIV/AIDS 1 ' 2 epidemic in Canada, authors and decisions makers
raised the concern that HIV/AIDS would become the leading cause of death for Aboriginal3
Canadians in the near future. In Canada, the incidence rate for HIV has decreased in the general
population, but has increased steadily in Canadian Aboriginal populations (Health Canada, 2006).
Data shows that from 1985-1997, 15% of positive HIV tests were among Aboriginal Canadians
(Public Health Agency of Canada, 2007). In 2007, this number jumped to 21.4% (Public Health
Agency of Canada, 2007). Reasons for the increased rate of HIV infection in Aboriginal people
are varied, and include socio-economic issues, poverty, addiction and limited access to
healthcare all of which have been perpetuated by a history of colonization and marginalization
(Health Canada, 2006; Newbold, 1998). With this context in mind, it is not surprising that the
difficulties of managing HIV - a disease which involves complex treatment regimens, high levels
of adherence for success, and wide variations in health status - can create unbearable burdens on
the people infected. These burdens can ultimately result in the person living with HIV failing to
engage in and maintain care, or the eventual disengagement of HIV related healthcare altogether.
For these reasons, it is imperative that greater efforts be made to understand the realities faced by
Aboriginal people in accepting, engaging in, and sustaining HIV medication adherence. This

HIV stands for Human Immunodeficiency Virus, it is a virus that attacks the immune system, resulting in a chronic,
degenerative illness that eventually renders the immune system helpless against invading pathogens HIV is the precursor
infection to the development of AIDS (Public Health Agency of Canada, 2009)
AIDS stands for Acquired Immuno-Deficicncy Syndiome In Canada, an official diagnosis of AIDS is made when a person
living with HIV develops one or more opportunistic infections or certain cancers (Canadian AIDS Treatment Exchange, 2006)
The teim "Aboriginal" refers to the descendents of the original inhabitants ot Canada, namely, the hirst Nations (61%), the
Metis (34%) and the Inuit (5%), who aie three distinctly different gioups, all with unique geographic and linguistic heritages,
cultuial piacticcs and spuitual beliefs (Macaulay, 2009)

research project will focus on one realm of hardship - addiction - and its role in the adherence of
Aboriginal people trying to succeed on Highly Active Antiretroviral Therapy (HAART) 4 .
My reasons for doing this research come from his time spent in the Downtown Eastside
of Vancouver, British Columbia, working at Insite5 and the Vancouver Injection Drug User
Study (VIDUS). 6 In this time, I learnt that a recognizable percentage of the clients at Insite and
research participants at VIDUS were actually Aboriginal people from Northern British Columbia.
These Aboriginal people reported a high migration rate to and from Northern British Columbia
and a lack of accessible healthcare and harm reduction services. I am from Northern British
Columbia, and I have developed a great interest and empathy in hearing the stories of injection
drug use among my fellow northern residents of British Columbia. When I decided I wanted to
return to school for my graduate education, I knew that I wanted to study HIV, and injection
drug use in Northern British Columbia. It took very little research to learn that HIV is a disease
that is ravishing the Aboriginal people of Northern British Columbia. From this knowledge, I
knew who, what and where I wanted to study for my thesis.

4

HAART is the medication regime used to suppress HIV viral replication and slow the progression of HIV disease. HARRT
combines three or more different drug classes such as two nucleoside reverse transcriptase inhibitors (NRTIs) and a protease
inhibitoi (PI), or two NRTIs and a non-nucleoside leveise tianscuptasc inhibitor (NNRTI), or othet such combinations (Cichocki,
2009)
Insite is North America's fust legal supei vised injection site Insite operates on a harm-reduction model, which is a policy or
program directed towards decreasing the adverse health, social and economic consequences of diug use without requiring
abstinence from drug use http //supervisedinjcction vch ca/
6

The Vancouver Injection Drug Users Study (VIDUS) is a cohort study in Vancouver's Down-town hastside VIDUS follows
approximately 1500 participants Every six months, VIDUS participants provide blood samples to be tested tor HIV and hepatitis
C, and they are mteiviewed about their diug use patterns and piactices, health status, access to health and social scivices, and
mteiactions with the criminal justice system http //uhu cfenet ubc ca/content/view/35'57/

3

Chapter Two: Review of Literature
Introduction
In this chapter, the academic literature relating to HIV, injection drug use, and
Aboriginal people will be explored. The literature review is presented in six broad segments. The
first segment gives a brief but ample overview of the global epidemiology of HIV. It then
presents HIV epidemiology within the Aboriginal populations of Canada, British Columbia, and
Northern British Columbia. The second segment provides a comprehensive overview of HIV
treatment - highly active antiretroviral therapy (HAART), and a short discussion around the
usage of HAART among British Columbia Aboriginal people. Thirdly, adherence to HAART is
discussed with a focus on three groups: people who use injection drugs, Aboriginal people, and
Aboriginal people who use injection drugs. Next, this section will explore the barriers to
accessing healthcare among Aboriginal people from a social justice perspective and a culturally
safe care perspective. Lastly, the gap in literature is discussed pertaining to the lack of
knowledge regarding Aboriginal people who use injection drugs and who are on HAART.
Information for this literature review was obtained from searches that consisted of
keyword7 searches in various electronic databases including Medline, EBSCOhost, Science
Direct, Web of Science, Elsevier Heath, and various electronic journals such as Journal of
Association of Nurses in AIDS Care, Journal of the American Medical Association, AIDS,
American Journal of Drug & Alcohol Abuse, Social Science & Medicine, Journal of Acquired
Immune Deficiency Syndrome, Drug and Alcohol Dependence and the International Journal of
STD and AIDS. These searches attempted to locate literature that explored the demographics of
HIV within selected Canadian and Canadian Aboriginal populations, barriers to HAART
'Keywords used in the literature search were adherence, illicit diugs, abuse, injection drug use, diug users, HIV/AIDS,
antirctrovnal therapy, ticdtment, non-adheicnce, medication adheicnce, HARRT, Aboiigmal, Indigenous and qualitative lesearch

4
adherence for people who use injection drugs, barriers, Aboriginal people, and general
information about HAART.
Literature Review
Global Epidemiology of HIV. Globally, the prevalence of HIV is levelling off, and the
number of new infections worldwide has fallen (World Health Organization, 2007). The World
Health Organization (WHO) estimates the number of people living with HIV in 2007 was 33.2
million, with 2.5 million people newly infected, and 2.1 million deaths of AIDS-related
complications (WHO). The WHO estimates that daily, there are 6,800 new HIV infections, and
over 5,700 deaths from AIDS worldwide (2007). It is estimated that injection drug use is the
route of transmission for approximately 10 percent of new HIV infections in the world (Spire,
Lucas, & Carrieri, 2007).
Canadian Epidemiology of HIV. In terms of HIV, the World Health Organization
approximates that there are 73,000 people living with HIV in Canada, with an adult prevalence
of 0.4 percent, and an annual mortality rate of less than 500 deaths (2008).
Demographics and HIV Epidemiology of Canada's Aboriginal People. In 2006,
Aboriginal Canadians represented 3.8% of the total Canadian population. This was an increase
from 3.3% in 2001, and 2.8% in 1996 - in fact, the Aboriginal Canadian population grew at a
rate six times faster than the non-Aboriginal population from 1996-2006 (Statistics Canada,
2006). In 2001, 4 1 % of Aboriginal children under the age of fourteen were living in poverty, a
rate three times higher than the national average (Macaulay, 2009). Additionally, in 2006, 11%
of Aboriginal people were living in overcrowded conditions, a rate four times higher than the
national average (Macaulay, 2009).

5
In 2005, Aboriginal people represented approximately 9% of new HIV infections in
Canada, and represented approximately 7.5% of all persons living with HIV in Canada (Boulos,
Yan, Schanzer, Remis & Archibald, 2005). In relation to injection drug use, surveillance reports
that include ethnicity indicate that injection drug use accounted for 40%> of reported AIDS cases
associated with Aboriginal people from 1979 to 2006, and 60% of HIV positive tests in
Aboriginal people from 1998 to 2009 (Public Health Agency of Canada, 2007b; Public Health
Agency of Canada, 2009). Figure 1 breaks down the exposure categories based on ethnic status,
it clearly illustrates that Aboriginal people are over-represented in the injection drug use
exposure category when compared to other ethnicities living in Canada.

Figure 1: Proportion of positive HIV test reports, by ethnic status and exposure category, 1998-2009 (Public Health
Agency, 2009).

In terms of being diagnosed with AIDS, Aboriginal people comprised 24.4% of reported
AIDS cases that contained ethnicity in 2006 (Public Health Agency of Canada, 2007a).
Summative data from 1999-2009 show that Aboriginal people accounted for approximately 12%
of all AIDS diagnoses in Canada (Public Health Agency of Canada, 2009). A note of concern
can be seen in the fact that an analysis of reported cases of AIDS from 1996 to 2005 found that
Aboriginal people were significantly more likely to have a late diagnosis of HIV as compared to
non-Aboriginal AIDS cases (Mill, Jackson, Worthington, Archibald, Wong, Myers, Prentice &
Sommerfeldt, 2008). In addition, figure 2 shows that Aboriginal people are increasingly
represented in the reported AIDS cases from 1979-2009.

Figure 2: Proportion of reported AIDS cases by ethnicity (Public Health Agency, 2009).

Provincially, in 2006 Aboriginal people accounted for approximately 5.1% (196,075) of
the 3,878,310 people living in British Columbia (British Columbia Stats, 2006). From 1995
through the year 2000, 19% of the new HIV infections and 14% of the AIDS diagnoses were

7
among Aboriginal people (Miller, Spittal, Wood, Chan, Schechter, et al., 2006). From 2001 to
2007, the HIV infection rates in Aboriginal people in British Columbia remained relatively stable,
with the average total number of infections being 62 per year, totalling 15.2% (433) of the total
number of new HIV infections in BC (British Columbia Centre for Disease Control, 2007). The
British Columbia Center for Disease Control (BCCDC) reported that in 2007, there were 395
new HIV positive cases, of which, 13.4% (53) identified as being Aboriginal (BCCDC). In
examining the rates of death due to AIDS in British Columbia, Status8 Indians have seen their
known rates double from 0.8 per 10,000 in 1993 to 1.9 per 10,000 in 2006 (Office the Provincial
Health Officer, 2009). Furthermore, a study by Miller et al. (2006) found that Aboriginal people
in British Columbia were less likely to have a physician experienced in treating HIV.
In the Northern Health Region, the region that is the focus of this research project,
Aboriginal people account for approximately 20% (65,000-85,000) of the total population
(Northern Health, 2008a). The HIV incidence amongst all people is 18 per 100,000 - the second
highest of any community studied in British Columbia (Northern Health, 2008). From 1998-2007
the Northern Health Region had 177 new HIV infections, and of these, Aboriginal people
accounted for 60.45% (107) of the total number (Northern Health, 2008). In 2007, Aboriginal
people accounted for 58%o of the new HIV infections in the Northern Health Authority,
compared to 15% of the total infections for all of British Columbia (Northern Health, 2008).

8

"Status" is a term used by the federal government that recognizes Aboriginal persons registered under the Indian Act Status
Indians are entitled to a wide range of programs and services offered by federal agencies, provincial governments and the private
sector Historically, entitlement to Indian status and Indian band membership has been complex and contioveisial (Indian and
Northern Atfairs Canada, 2009)
9

The Noithern Health Region - also known as the Northern Health Authority - covers almost two-thuds of Bntish Columbia's
landscape, boideied by the Northwest and Yukon Territories to the north, the BC intenor to the south, Alberta to the east, and
Alaska and the Pacific Ocean to the west The Northern Health Region is divided into three operational areas called Health
Service Delivery Areas (HSDAs) the Northeast, the Northern Intenor, and the Northwest In 2010 approximately 348,000 people
will live in Northern BC, with 13% of the population identifying as Aboriginal, the highest proportion in the piovince (Northern
Health, 2009b)

8

Highly Active Antiretroviral Therapy. The gold standard treatment for HIV/AIDS is a
combination of medicines called Highly Active Antiretroviral Therapy (HAART; Canadian
AIDS Treatment Information Exchange (CATIE), 2006). There are two main classes of HIV
medications that are included in HAART for patients who are treatment naive: reverse
transcriptase inhibitors - which include both Nucleoside Reverse Transcriptase Inhibitors
(NRTIs) and Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs) - and protease
inhibitors (Pis; CATIE, 2006). HAART is the combination of at least three or more drugs from
these two classes (CATIE, 2006), as the use of only one drug was found to have a high
predisposition to developing resistance in the early days of HIV treatment (Avert, 2009). Each
medication works by disrupting the actions of different proteins that HIV needs to reproduce
(CATIE, 2006). HAART is among the most complex treatment regimens ever prescribed,
typically requiring anywhere from one pill once a day, to 10-20 pills per day at various times,
with strict coordination with meals (CATIE, 2006; Weiss, 1999). The complexity of HAART
treatment is increased by the fact that greater than 95% adherence is needed to achieve high
levels of virological and immunological response (Lima, Harngan, Murray, Moore, Wood, et al.,
2008). If the required high levels of adherence are not maintained, the development of drugresistant strains of HIV may occur. This can cause a return to the high levels of HIV viral load,
often seen in people living with HIV prior to commencing HAART (Weiss, 1999).
In British Columbia, only 50% of people who are living with HIV and who are eligible
for HAART receive it (Office of the Provincial Health Officer, 2007). Reasons cited for the low
levels of HAART uptake are that many people who are eligible for treatment are in "hard-to10

According to the BC Center for Excellence in H1V/A1DS, HARRT should be started for "asymptomatic individuals before the
CD4+ count falls below 500 cells/i-iL At present, there aie no definitive randomized clinical tnal data to define a specific CD4+
count threshold above 500/j.iL for beginning therapy T herefoie in this group, decisions should be based on co-moibidities, risk
for disease progression (including nsk foi non-AIDS diseases), and patient willingness to adhere to long-term tieatment" (British
Columbia Centie tor Excellence in HIV/AIDS, 2009, p 6)

9
reach populations" - i.e. people who are addicted to drugs, have mental illnesses, are homeless,
and/or are living in remote locations - all conditions or situations that Aboriginal people are
disproportionately represented in (Office of the Provincial Health Officer, 2009). A recent study
reported that Aboriginal persons accessing HAART had shorter survival and mortality rates that
were three times higher than non-Aboriginal Canadians due to a combination of late diagnosis of
HIV, and late initiation of HAART (Lima, Kretz, Palepu, Bonner, Kerr & Moore, 2006). In fact,
a study by Wood and colleagues (2003a) found that since the introduction of HAART in British
Columbia, one-third of people who have died from AIDS-related complications had never
received antiretroviral therapy, and that Aboriginal ancestry was associated with dying without
receiving treatment for HIV/AIDS. Additionally, Aboriginal people receiving HAART in British
Columbia were more likely to be living below the poverty line and in unstable housing than nonAboriginal people (Miller et al., 2006).
Adherence to HAART. A review of the existing literature unequivocally demonstrates
that high levels of adherence - over 95% - are needed for HARRT to achieve maximum viral
suppression, reduce mortality and morbidity, and increase the quality of life for persons living
with HIV (Garcia, & Cote, 2003; Russell, Krantz & Neville, 2004; Stein, Rich, Maksad, Chen,
Hu, Sobota & Clarke, 2000; Ware, Wyatt & Tugenberg, 2005; Wood, Montaner, Tyndall,
Schechter, O'Shaughnessy & Hogg, 2003b). In fact, HIV disease progression and deaths
attributed to AIDS among people receiving antiretroviral therapy in many parts of the world is so
rare, that HIV is now recognized as a chronic and manageable illness (Wood et al., 2003b).
The difficulties of achieving high levels of adherence arc well documented in the
literature (Ware et al., 2005; Russell et al., 2004; Stein et al., 2000). Reasons for the difficulties
in achieving high adherence include, but are not limited to, the complexity of the medication

10
regimens, the severity of side effects, forgetfulness of the patient, mental health issues,
residential patterns, stigma, lack of knowledge of HIV and disease process, inadequate coping
mechanisms, dietary recommendations, disruption to daily routine, physical factors, required
life-long therapy and addiction issues (Garcia & Cote, 2003; Gray, 2006; McDonnell, Pace,
Anindya & Ura, 2006; Sorensen, Haug, Delucchi, Gruber, Kletter, et al., 2007; Stein et al., 2000;
Ware et al., 2005). In addition, many people living with HIV are marginalized - for example,
many Aboriginal people and people who use injection drugs - and such populations frequently
distrust health providers (Mallinson et al., 2007). In 2006, a study by McDonnell and colleagues
found that high levels of adherence to HAART was significantly correlated with fewer years
living with HIV, fewer years on HAART, high levels of perceived support, absence of perceived
barriers, high levels of self-identified general health, a dedicated intention to adhere to the
medication regimen, and a strong belief in the effectiveness of the medications.
HAART Adherence in People Who Use Injection Drugs. The overwhelming theme in
existing research literature is that people who are living with HIV and active addiction have great
difficulty achieving high levels of adherence to HAART (Amsten, Demas, Grant, Gourevitch,
Farzadegan, et al., 2002; Cofrancesco et al., 2008; Gordillo, Amo, Soriano & Gonzalalez-Lahoz,
1999; Lert & Kazatchkine, 2007; Lucas, 2001; Sorensen et al., 2007; Spire, Lucas & Carrieri,
2007; Ware et a l , 2005; Stein et al., 2000; Wood et al, 2003a). A study on the determinants of
discontinuation of HAART in Vancouver, British Columbia found that up to 50% of people who
use injection drugs discontinue therapy prematurely, and that among the 50% remaining on
treatment, 60% of them have suboptimal adherence to HAART (Kerr, Marshall, Walsh, Palepu,
Tyndall & Montaner, 2005; Kerr, Palepu, Barnes, Walsh, Hogg & Montaner, 2004). To further this
point, Wood and colleagues (2003b) found that suboptimal adherence in people who use injection

11
drugs leads to a more rapid HIV disease progression due to lower virological response to treatment.
In the same study, Wood and colleagues found that between August 1, 1996 and July 1, 2000, of
the 1,422 patients who initiated HAART therapy, 25.2% (359) were people who used injection
drugs. Of these 359, results showed that those who used injection drugs were less likely (p =
0.001) than the rest of the study participants to be at least 95% adherent (2003b). In 2002, a study
by Arasten and colleagues, found that active cocaine use was the strongest predictor of poor
adherence, with the overall successful adherence being 27% for active cocaine users compared to
68% for participants who reported no cocaine use for the previous six months. Furthermore, in a
study done by Cofrancesco et al. (2008), of the 1457 participants studied, people who were
currently using heroin and crack/cocaine and who were on HAART were less likely to achieve
viral suppression, which is indicative of poor antiretroviral adherence.
Most studies tend to associate poor adherence to the inconsistent, unpredictable, and
chaotic lifestyles led by people who use illicit drugs (Hinkin, Barclay, Castellon, Levine,
Durvasula, et al., 2007). In addition to the chaotic lifestyles resulting from compulsive drugseeking behaviours, people who use injection drugs often face issues such as homelessness and
psychiatric illnesses, which can both severely complicate people's abilities to achieve successful
adherence to HAART (Wood, Kerr, Tyndall & Montaner, 2008b; Palepu, Yip, Miller, Strathdee,
O'Shaughnessy & Montaner, 2001). Wood and colleagues (2008b) completed an in-depth
literature review into the barriers to HAART adherence among injection drug users and found that
the barriers can generally be grouped into socio-structural, individual-level, and provider-based
concerns.
Socio-structural barriers. The socio-structural barriers to achieving high levels of HAART
adherence include incarceration, stigma, social exclusion, lack of or substandard housing, health

12
care systems, and illicit drug policy (Palepu et a l , 2003; Wood et al., 2003b). A study by Kerr,
Marshall, Walsh, Palepu, Tyndall, Montaner and colleagues (2005) found that the most
frequently cited reason for discontinuing HAART among 160 participants of the V1DUS study
was incarceration. Reasons for discontinuing HAART while incarcerated were explored in a
discussion paper by de Bruyn (1998). He found that the structural characteristics of prisons and
the associated routines of prison life make maintaining a HAART regimen difficult. This can be
due to the drug dispensing times, dietary requirements, and issues involved in attending court
and transfers. De Bruyn also noted that many people do not disclose their HIV status while in
prison for fear of negative consequences such as intimidation and violence (1998). Furthermore,
recent research by Small and colleagues (2009) found that suboptimal adherence while
incarcerated may be linked to difficulties obtaining prescription medication within correctional
facilities, poor relationships between prisoners and healthcare staff, and the high levels of
discrimination towards both HIV status and injection drug use. A study by Room (2005) found
that drug addiction received a higher rating of social disapproval than that of having a criminal
record for burglary or not caring for one's children. This disapproval can be seen in the public's
opinion concerning the setting of health care priorities, for example, illicit drug users should
receive less priority in healthcare, as it is believed that they (illicit drug users) are ultimately
responsible for their condition (Olsen, Richardson, Dolan & Menzel, 2003). Housing can also
play a large part in one's ability to be adherent to HIV medications. Substandard living
conditions can include crowded living situations, lack of privacy and security, lack of food
security and cooking facilities, and inadequate sanitary facilities - all of which are proven to be
vital to successful adherence (Krusi, Wood, Montaner & Kerr, 2010). The organization of health
care systems can also be a barrier to adequate adherence. Highly compartmentalized health care

13
systems do not easily allow for individualized, comprehensive care (Krusi et al., 2010).
Individual health care needs can include HIV specialty care, primary care, addictions care, and
mental health care to name a few. Finally, illicit drug policy itself can present a major barrier to
being adherent to treatment as prohibitory drug laws can negatively contribute to the
participation in HIV treatment by causing insurmountable barriers between people who use
injection drugs and healthcare services - exampled by the lack of needle exchange programs in
the Canadian penitentiary system (Krusi et al., 2010).
Individual-level barriers. The individual-level barriers to HAART adherence include increases in
intensity and frequency of illicit drug use, lower adherence self-efficacy, associated psychiatric
and medical co-morbidities, and the perception of the negative side-effects of HAART (Stein et
al., 2000; Kerr et al., 2004, Arnsten et al., 2007, Carrieri et al, 2006). Increases in intensity and
frequency of illicit drug use were found to play a factor in reduction in adherence capabilities by
Stein and colleagues (2000). They found that the only factor significantly associated with nonadherence was continued use of injection drugs. Adherence self-efficacy is the confidence that a
person has in one's ability to adhere to a treatment plan (Johnson, Neilands, Dilworth, Morin,
Remien and Chesney, 2007). Arnsten and colleagues (2007) found that self-efficacy was an
important factor for 636 people who continued to use illicit drugs but were able to remain on
HAART. Carrieri and colleagues (2006) corroborated evidence that links psychiatric morbidities
with adherence to HAART. Additionally, Carrieri and colleagues (2006) found that side effects
of HAART have the ability to not only influence adherence in the short term but can also
influence long term adherence.
Provider based barriers. The provider based barriers to HAART adherence found in the
literature describe that among healthcare providers, there is an underlying assumption that people

14
who use injection drugs are not capable of achieving the high levels of adherence needed for
viral suppression, and therefore clients should not be started on HAART until addiction issues
are resolved (Wolfe, 2007; Strathdee et al., 1998; Celentano et al., 1998; Peretti-Watel et al.,
2006). In a longitudinal study of 404 people who use injection drugs, Celentano and colleagues
found that half of whom reported being actively involved in injection drug use - 49% (199) of
the HAART-eligible participants reported taking no antiretrovirals at all (1998). Strathdee and
colleagues' (1998) studied the barriers associated with free antiretroviral therapy for people who
use injection drugs. They found that based on a combination HIV treatment experience of the
physician and patient characteristics including sex, age, and enrolment in drug treatment
programs that only 40% (71) of the 177 participants eligible for HAART received HIV
medications.
On the other hand, there is literature that supports the idea that people who use injection
drugs are able to maintain the high levels of adherence required of HAART when specific efforts
are made to assist them. An example of such efforts is opiate replacement therapies including
methadone and buprenorphine (Lert & Kazatchkine, 2007; Moatti, Carrieri, Spire, Gastaut,
Cassuto, & Moreau, 2000). To further this point, Wood and colleagues (2003b) found that there is
no evidence that conclusively indicates that people living with HIV and actively using injection
drugs are any less likely to respond to HAART when provided with optimal therapy and
experienced physicians.
HAART Adherence among Aboriginal People. Several studies have shown that Aboriginal
people typically have less access to health care and prevention services. Barriers include the actual
physical access and access to culturally appropriate health care - both of which are influential on
one's ability to be adherent to HAART (Wood et al., 2008b; Lima, Kretz, Palepu, Bonner, Kerr,

15
Moore et al., 2006; Newman, Bonar, Greville, Thompson, Bessarab & Kippax, 2007). A study by
Wood and colleagues found that Aboriginal people are more likely to die from AIDS- related
complications without ever having accessed HAART treatment in British Columbia, despite
universal, free access to HIV medications (2003). Additionally, Aboriginal people are less likely to
have a treating physician that is experienced with HIV, and research has shown that physician
experience is related to treatment success (Miller, Spittal, Wood, Chan, Schechter, Montaner, &
Hogg, 2006). Furthermore, Aboriginal people receiving HAART have been found to be more
likely to be living under the poverty line and in unstable housing - another factor that is strongly
associated with low adherence and interruptions in treatment (Palepu et al., 2001). A study done in
Western Australia on the barriers and incentives to HIV treatment among Aboriginal people found
that fear of disclosure and discrimination, alcohol consumption, lack of stable housing, inability to
afford nutritious food, and inadequate income were all factors in poor adherence to HAART
therapy (Newman et al., 2007).
Comparable examples of adherence barriers faced by Aboriginal people can be found in the
literature regarding adherence to Tuberculosis treatment among Aboriginal people - treatment
regimes that are similar to HIV medication regimes, in terms of daily dosages and required high
level of adherence. A study by Gibson, Cave, Doering, Ortiz, and Harms (2005) on the sociocultural factors that influence prevention and treatment of Tuberculosis among Aboriginal and
immigrant people found that English language proficiency, Tuberculosis-specific disease
knowledge, and stigma were all factors associated with treatment adherence. Specifically among
Aboriginal people, the stigma attached to being infected with Tuberculosis was a commonly cited
barrier to medication adherence and was associated with the abandonment of treatment and delays
in engagement of care (Gibson, et al., 2005). In the same study, Gibson and colleagues (2005)

16
found that all participants reported lengthiness of treatment11 for Tuberculosis as an obstacle to
adherence, as taking medications placed great constraints on daily life, such ability to care for
children, ability to work full-time or attend school. Medication adherence is also attached to the
accessibility of health care.
HAART Adherence among Aboriginal Injection Drug Users. There is very little research
that focuses on HAART adherence among Aboriginal people who are current injection drug
users. However, the literature supports the fact that within the adult Aboriginal population,
injection drug use is considered one of the primary modes of HIV transmission, accounting for
approximately 60% of new HIV infections in Vancouver, British Columbia (Marshall, Kerr,
Livingstone, Li, Montaner, & Wood, 2008). Furthermore, studies have found that Aboriginal
injection drug users have a slower uptake of HAART -29.2% compared to non-Aboriginal
injection drugs - 53.7% at 24 months post enrolment, and that Aboriginal injection drug users
remain off HAART for significantly longer periods of time (Wood et al., 2006).
Barriers to accessing healthcare jor Aboriginal people. According to Lerat (2005), the
experience of many Canadian Aboriginal people with the mainstream healthcare system has been
overwhelmingly negative. Such interactions inevitably result in higher rates of non-compliance
and reluctance to use mainstream health services (Lerat, 2005). McCall, Browne and ReimerKirkham (2009) interviewed eight Aboriginal women with the goal of developing a greater
understanding of the barriers, challenges, and successes of accessing healthcare services. Three
main themes emerged from the data: fear of rejection, struggles with HIV symptoms, and living
with the stigma associated with HIV (McCall et al., 2009). In Australia, Newman, Bonar,
1
' 1 reatmcnt for Active Tuberculosis is divided mto two phases the initial or intensive phase, when drugs are used in
combination to kill rapidly lcphcating populations of M tuhei culosis and to prevent the emergence of drug resistance, followed
by the continuation phase, when drugs arc used to kill slowly and intermittently icplicatmg populations The tieatmcnt icgimens
can include ditfcung number of drugs and can range from 6/9/12 months in duration (Public Health Agency of Canada, 2007c)

17
Greville, Thompson, Ressarab and colleagues (2007) interviewed 20 Aboriginal people to
discover some of the barriers Aboriginal people living with HIV faced when attempting to start
HAART. They found that the barriers to HAART and general access to healthcare were fear of
disclosure and discrimination, heavy alcohol consumption, and poverty - all factors, which can
be generalized to Aboriginal Canadians (Newman et al., 2007). The same authors also found that
for many Aboriginal people, maintaining social relationships, respect of friends and families, and
maintaining normal everyday routines was a greater priority than their individual health. Jackson
and Reimer (2005) conducted a nation-wide survey of 195 Aboriginal people living with
HIV/AIDS (APHAs) in Canada. They found that the most common barriers to accessing
healthcare services were logistical barriers, including long wait times at emergency departments;
perceived poor HIV-related care, resulting in less desire to seek medical attention; and
expressions of HIV stigma, racial prejudice, and homophobia that prevented full access to
healthcare (Jackson & Reimer, 2005). In 2008, the Canadian Aboriginal AIDS Network (CAAN)
commissioned a report to study the perceptions of care among Aboriginal people having AIDS
and healthcare providers with the end goal of designing 'wise' practice guidelines for HIV health
care providers who work with APHAs. The research consisted of 22 interviews with Aboriginal
people living with HIV, and focus groups with primary and community-based HIV professionals
(CAAN, 2008). The study found that the most commonly expressed reason for not accessing
healthcare was the fear of experiencing stigma, racism, or homophobia from family, friends, and
healthcare providers (CAAN, 2008). Safe care is thus paramount, when providing care to
Aboriginal people. The next section of the thesis will examine the concept of culturally safe care,
and how it is related to providing care for Canadian Aboriginal people living with HIV.
Subsequently, with culturally safe care in mind, this section will explore the academic literature

18

for the aspects of healthcare that need to be modified to allow for maximum efficacy of treatment
for Canadian Aboriginal peoples.
Provision of culturally safety. Cultural safety

is defined as the on-going commitment

to provide healthcare that is responsive to cultural diversity (National Aboriginal Health
organization, 2008). Cultural safety readily adapts care to meet cultural values and beliefs, and
promotes a continuous process of learning and sharing between the health care provider and
client (College of Registered Nurses of Nova Scotia, 2006). Cultural safety within an Aboriginal
health context means that the health care worker, whether Aboriginal or not, "can communicate
competently with a patient in that patient's social, political, linguistic, economic, and spiritual
realm" (National Aboriginal Health Organization, p.4, 2008). This means that the simple
provision of physical and psychological care does not equate to culturally safety. Cultural safety
is not just tolerating Canadian Aboriginals people's views and practices; it is encouraging and
embracing Aboriginal views and practices. In terms of Canadian Aboriginal people, cultural
safety entails a holistic approach to health that includes and respects traditional Aboriginal views
of illness, and maintains the balance between the four realms of physical, spiritual, emotional
and mental health (Mill et al., 2008).
Research conducted by Hamill and Dickey with American Aboriginal people suggests
that due to a traumatic history of neglect and deception, Aboriginal people may be reluctant to
seek health care services from non-Aboriginal providers (2005). In order to restore the balance
and to achieve culturally safe care, Hamill and Dickey (2005) have made the following

12
"Cultural safe care" is derived from the phrase "cultural safety" - a term developed in New Zealand in the 1980s Cultuial
safety is the effective nuismg of a person/family from another culture by a nurse who has undertaken a process of reflection on
their own cultural identity and recognizes the impact of the nuises' culture on their own nursing practice Additionally, cultural
safety empowers the users of the service to expiess degrees of felt risk or safety Cultural safety recognizes that a patient who
feels unsafe may not take full advantage of the health services being offered, and therefoie avoid services until absolutely
necessaiy (Papps and Ramsden,1996)

19
suggestions: increase the awareness of the importance and impact of colonization on Aboriginal
peoples, encourage acceptance and promotion of the practice of traditional approaches to healing,
and become familiar with the communication style of Aboriginal people. In order to incorporate
the aforementioned suggestions into current healthcare practice, we need to break down
specifications of care to: assessment of medical conditions, direct care provision, counseling, and
referral services provided.
Assessment of medical conditions. The foundation of health in Canadian Aboriginal
people is based on a holistic approach, encompassing individuals' psychological, emotional,
physical and spiritual well-being (Lerat, 2005). It is therefore important that when assessing the
health care needs of Canadian Aboriginal people, the healthcare provider understands the health
perspective of the individual. It is important to understand that although Western practitioners
may see traditional Aboriginal healing practices as alternative, it is actually the other way around
for many Canadian Aboriginal people, so it is vitally important that healthcare providers take the
time to explain the rationale for health assessments and care provided. With that said, it is also
important to recognize that many Canadian Aboriginal people are comfortable navigating and
functioning within the Canadian healthcare system, that not all Aboriginal people value
Aboriginal healing practices, and, that there are numerous different Aboriginal groups with
different practices, beliefs, and customs.
Direct care provision. With the recognition that Western contemporary medicines are
needed in the care of HIV, it is integral that they be integrated into Canadian Aboriginal people's
holistic approach to care (Lerat, 2005). If the healthcare provider is able to offer some level of
traditional health and wellness programs, it increases the chances that more Aboriginal people
living with HIV will accept future care and support (Lerat, 2005). According to Lerat (2005), a

20
commonly used traditional practice by Canadian Aboriginal people are Healing Circles. The
Healing Circle allows for the creation of a safe environment to talk about illnesses, and to share
feelings without the worry of negative reactions by other people. A second commonly used
health practice are traditional ceremonies, which allow for conscious contact with the Creator,
allowing for the psychological, emotional, physical and spiritual parts of the body to align (Lerat,
2005). Another important practice is the use of traditional herbs, which are used for a smudging
ceremony. The herbs most often used are tobacco, cedar, sage and sweetgrass (Lerat, 2005).
Counselling and referrals services. The ability of Canadian Aboriginal people to learn
and connect with their traditional culture has resulted in an improved coping ability to deal with
negative encounters and events - such as living with HIV (Lerat, 2005). in applying this concept
to counselling and referrals, it has been shown that satisfaction in connecting with traditional
culture in Canadian Aboriginal people is highest in those that are the sickest - i.e. advanced HIV
disease (Lerat, 2005).
Knowledge gap
The key points presented in this chapter can be summarized in five brief points. Firstly,
the epidemiology of HIV clearly demonstrates that Aboriginal people in Canada are at greater
risk for HIV and have higher incidence rates than non-Aboriginal Canadians. Secondly,
Aboriginal people typically have delayed access to HAART, and having Aboriginal ancestry is
associated with a higher risk of dying without ever having accessed HAART. Thirdly, achieving
the high levels of adherence to HAART needed for maximal viral suppression is very difficult.
Fourthly, independent of each other both active injection drug use and being Aboriginal are
factors associated with poor adherence to HAART. Finally, very little research has been done on

21
identifying components of an adherence support program aimed at Aboriginal people on
HAART who continue to use illicit injection drugs.
In carrying out this literature review, it has become apparent that there exists a gap in
knowledge about the experience of HAART adherence for Aboriginal people who are also
current injection drug users. Therefore it is imperative for further research to investigate how,
that in a time for many, adherence to HAART is becoming a non-issue that a greater attempt is
made to understand the issues affecting adherence for Aboriginal people who continue to use
injection drugs. The aim of this study was to fill this gap. Specifically, this study provided the
participants with an opportunity to tell their own stories of adherence to HAART, and inform
how adherence support can be improved to facilitate greater adherence rates among Aboriginal
people who use injection drugs. Four questions were asked of the participants: please tell me
your story of living with injection drug use; please tell me your story of living with HIV (and
injection drug use); please tell me your story of HIV treatment; please tell me your story of being
Aboriginal, HIV positive, and using injection drugs. I hope to contribute further information that
will allow healthcare providers to develop and carry out HAART adherence support programs
that better address the needs of Aboriginal people living with HIV who continue to inject illicit
drugs.

22
Chapter Three: Methodology
Introduction
In this chapter, I will begin by locating myself within Aboriginal research. Next, I will
discuss the fundamentals of qualitative research tradition and position grounded theory within
this tradition. Additionally, a comprehensive discussion of the research design and methods used
in this research project will be provided, specifically paying consideration to sample selection,
data collection and analysis, methodological rigor, ethics, and the strengths and limitations of the
research project. Finally, the research participant profiles will be presented.
In order to successfully meet the criteria of Aboriginal research, it is imperative that I
respect Aboriginal culture and work within Aboriginal protocols for community-based research
(Absolon & Willett, 2005). To do so, I will answer the following questions: (1) Who is doing the
research? (2) How is the research being done? (3) What purpose does the research serve to the
community (Absolon & Willet, 2005)? In order to successfully explain the protocol, the
following discussion will be broken down into the following sections: locating myself within
Aboriginal research, theoretical framework, methods, and analysis.
Locating Myself within Aboriginal Research
When conducting Aboriginal-based community research, it is important for the researcher
to be cognizant of Aboriginal ways of knowing, and to be accountable for their own positionality
(Absolon & Willett, 2005). Positionality is a way of locating oneself within Aboriginal research.
Positioning is more than saying one is an American or Canadian, or from Vancouver or British
Columbia; location is about the relationship the writer shares with the land, and language. It is
about the spiritual, cosmological, political, economical, environmental and social elements in one's

23

life (Absolon & Willett, 2005). The purpose and strength of using location in Aboriginal research
is that,
It means revealing our identity to others; who we are, where we come from, our
experiences that have shaped those things, and our intentions for the work we plan to
do. Hence, 'location in Indigenous research, as in life, is a critical starting point'
(Sinclair, 2003, p. 122).
What Sinclair is saying, is that if a researcher wishes to conduct ethical research within
Aboriginal communities - accurately represented research - then the researcher must show
his/her positioning and connection to the intended research. Moreover, when a researcher locates
(uses positionality), the message given to the research participants and Aboriginal community at
large, is an understanding that the reason the researcher is gathering data and asking potentially
difficult questions is to improve current community conditions, and that the hopeful outcomes of
the research will be useful to the community (Absolon & Willett, 2005). By claiming location, I
am acknowledging Aboriginal world views and Aboriginal "ways of knowing", thus
transforming my research to fit within Aboriginal accepted ways of subjectivity, credibility,
accountability and humanity.
Positioning Statement of Robert Sam Milligan. I was born April 1, 1974 in Vanderhoof British
Columbia, Canada. My parents, William Robert Milligan (welder / fabricator / farmer, born in
Sudbury, Ontario on April 14, 1944) and Elizabeth Wendy Walker (initially a stay-at-home
mom turned school teacher, consummate volunteer, and then victim services coordinator at the
Prince George RCMP detachment, born June 18, 1948 in Surrey, British Columbia) had moved
to Vanderhoof in 1973 with their two daughters, to start a new life in Northern British Columbia.

24
My parents had known each for several years, and my mother was actually married to one
of my father's best friends. Unfortunately (but fortunately for me), my mother's first husband
was killed in a hunting accident, leaving my mom as a 25-year-old pregnant widow, with one
other daughter. My father, who at the request of my mother, helped during that first Christmas
assembling presents, and took the opportunity to grab my mother's heart (a woman his parents
always believed he loved). Soon that assistance and energy turned into love, marriage, adoption
and the decision to move north.
My father, being a retired Canadian Navy gunner who had recently received his welding
ticket, led the charge north to find a new home, and settled in Vanderhoof, the "geographical
center of BC." I remember my father often saying, "If I had not found work here, Whitehorse
was the next stop." My father worked all over British Columbia, and was often absent in my
upbringing, but his words were never far, and his discipline was even closer. The one guiding
principle my father taught me was, "Work hard, never ask for anything for free, and for God's
sake, owe as little money as possible!" I often believed one of his worst fears would have been to
be the father of a lazy child. Dad is not an educated man, with his formal education topping out
at what he calls "high 8 low 9," but I would challenge anyone to have his knowledge and
professional abilities in the construction industry - and I have to mention - I have never seen
anyone get so worked up and angry over the evening CBC news hour. Dad was also a big
education pusher. He was constantly, yet subtly, pushing us to do well in school, and he forbid
any of us from going into a labour position: "It's too hard on your bodies. My kids will use their
brains" was a message I heard for years. Dad was the consummate provider, making sure each of
his kids was given all the opportunities he was denied, as long as we did not act spoiled; he
would spoil us to no end.

25

My mother had many jobs when I was growing up, but perhaps the most difficult was
being a mother of three rather different children. My oldest sister was wild at heart, and I am sure
she rattled my mom's confidence in her parental abilities on a weekly basis. My middle sister
was the quiet, reserved, never-do-anything-wrong academic superstar, who only challenged my
parents with the boys she decided to date and her own tears of punishment if she ever came close
to getting in trouble. I, on the other hand, was a walking medical disaster. I had the only medical
chart that could be picked out from across the room at the local health clinic - you just had to
locate the biggest one. I had epilepsy, poor vision, poor hearing, and poor language skills leading too many years of academic struggle. 1 regularly put my face in front of moving objects
and had a tendency to acquire infections like I was an obsessive collector of bacteria and viruses.
This combination added up to a local doctor telling my parents to be prepared for the fact that I
would have to live with them for the rest of their lives, as I would never be able to hold a fulltime
job or take care of myself. Fortunately, my mom never really liked that doctor, and my father
liked him even less and they vowed I would achieve everything the doctor said I would not.
Mom ruled the house and family with an iron slipper that was thrown with deadly accuracy - she
possessed a wicked curve, and was especially adept at hitting moving targets. The three of us
were raised in a loving and happy home, but a home with rules. We were challenged to do the
right thing, and supported when the right thing would lead us into trouble with so-called
authority figures - high-school band and social studies teachers for example. My parents knew
we witnessed them standing up for their rights and the rights of others, so although we were
taught to respect our elders and were reprimanded in public for breaking certain rules, we were
often praised in private.

26
We lived in the country on a farm, with the typical farm animals, and the responsibilities
of farm kids. My first school was Mapes Elementary, a small rural school that had approximately
100 students. Demographically, the community was mostly Caucasian with a few Aboriginal
kids. Retrospectively, all of the Aboriginal kids were in foster homes. 1 remember initially being
friends with everybody, and not realizing a difference between white kids and Aboriginal kids,
but as time went on, and the years past, I have to admit, I grew to look at Aboriginal people as
second class citizens. The influences of my school, friends, town, teachers and at times the
actions of the Aboriginal kid themselves, all led me to become what I am shamefully admitting
to know now as being racist towards Aboriginal people. My thoughts were that they got paid to
go to school, got everything for free, were always trying to fight or steal from me, did poorly in
school, and were lazy.. .what judgmental thoughts coming from a kid who was never supposed to
be able to take care of himself.
I went through elementary and high-school with a growing dislike and disdain of
Aboriginal people - with the exception of two individuals. Vern was one of my best friends. He
was, however, adopted into a white family, and had a more outwardly negative attitude towards
other Aboriginal people than anyone I knew. I vividly, yet now sorrowfully, remember our first
road trip together. We went to Banff. I will never forget, seeing first hand, how Vern was
treated like a "typical-Indian," i.e. lazy, dumb, and second-class. I and our other friend just
brushed it off, and pretended it did not happen - but I can still remember seeing the anger in
Vein's face. Sadly, Vern was killed in a car accident when he was 21 years old. Randy was my
other close Aboriginal friend. We met in grade 6 and had an instant kinship for years. I've lost
track of him in recent times but often think of the gags we used to play together.

27
It was in college, when I first started learning about the true position and plight of the
Aboriginal people of Canada. I was on a bus in North Vancouver, and an Aboriginal woman had
a shirt on that read "Aboriginal Holocaust, 1492 to — . " I was upset and wanted to verbally
attack her, and blame her, and say it was her own fault, and if Aboriginal people weren't so lazy
then they could be a productive part of society. Fortunately, I didn't say anything, mainly
because I knew my parents would consider me in the wrong. What I did do, was develop a
curiosity about Aboriginal history. I travelled around North America after that, working in many
different locations, and was introduced to Aboriginal cultures in locales from Whitehorse to
Haida Gwaii to New Mexico. I remember how the walls of racism that I had developed in my
childhood began to breakdown.
I started nursing school in the fall of 2001, and immediately was challenged by several
professors as we studied culture and culturally appropriate care - in fact I loved it, and knew that
I wanted to work and learn from all cultures. After graduation, I went to work immediately in the
Downtown Eastside of Vancouver. I worked at the supervised injection site, and was exposed to
the severity of mental health, addictions, infectious disease, poverty and life on the outside of
accepted popular culture. This was the first time I was introduced to the concepts of
marginalization and colonization. I heard stories from clients I worked with about the horrors of
residential school. It was at this time that I began to realize the extent of colonization on the
Aboriginal peoples of Canada. It was at this time that 1 decided I needed to not only leara the
truth, but to also challenge my beliefs and to start speaking out and challenge the popular notion
of Aboriginal peoples. I started asking questions, and more importantly, I started listening to the
stories of Aboriginal people who were born into lives where they were denied their ancestry,

28
denied their cultural identity, denied the ability to have a safe and family-orientated childhood,
labelled as second class citizens, and labelled as a dying race.
In 2008,1 started graduate school at the University of Northern British Columbia in
Community Health Sciences. I also started work at Central Interior Native Health Society, a
health clinic for Aboriginal people, and all people who are on or close to the street. I was hired as
the HIV outreach nurse, but quickly realized that I was also expected to learn and embrace
Aboriginal ways of knowing, teaching and learning. My education at UNBC was equally
challenging: I was presented and challenged with Aboriginal history from the perspective of
Aboriginal peoples. I took classes from Elders, and learned their stories, and listened to their
perspective of the world. For the first time, I understood that Aboriginal peoples are unique to
themselves not only as a race, but also unique to themselves as individuals. They are not darker
skinned white people sitting in front of me, but, in fact, many Aboriginal people share a
connection to the world that while not beyond comprehension to me, does push and exceed my
reaches into the realm of spirituality, emotionality, physicality, and mentality.
It was this time that I knew I had finally opened my heart and mind, and become
accepting of peoples' struggles and challenges within their lives. This is the first time my Dad's
words of, "My kids will use their brains" really made sense to me.
This positionality of me is where I am today. I respect the fact that my location will
change in the future as representations will change depending on the context, and the realities I
am locating too. This is who I am today, not yesterday, not tomorrow.
Theoretical Framework
A qualitative study design was chosen for this study because of its strength in exploring
the meanings of identified social phenomena as experienced by individuals themselves, in their

29
natural context (Malterud, 2001). Qualitative research is used when little is known about a
phenomenon, and the researcher is seeking to gain insight, knowledge, and understanding from
an "insider's" point of view (Morse & Field, 1995). In terms of this research study, it is hoped
that by adapting a qualitative design, deeper insights will be elicited into the broader clinical
realities of the lived experience of Aboriginal people living with HIV and active injection drug
use. Insight will be gained through developing a greater understanding of participant lives,
experiences, emotions, and struggles, within the context of their lived realities.
This study will use a grounded theory (GT) approach in its qualitative analysis. GT
places emphases on letting a theory emerge from the data, rather than trying to generate answers
to fit into a theory (Creswell, 2008). One of the strengths of GT is its contribution in areas where
little research has been done, such as the role of active injection drug on the adherence of
Aboriginal Canadians. By using GT, the variables relative to the studied phenomena will be
brought forth, allowing for future in-depth study (Chenitz & Swanson, 1985). Ultimately, by
using GT, I hope to understand the phenomenon - IIAART adherence barriers - being studied as
experienced, perceived and valued by the participants.
Grounded theory was chosen over other possible qualitative theoretical frameworks such
as narrative analysis, ethnography and phenomenology as it truly allows for and even
necessitates that the researcher use concepts generated from the data as opposed to the already
identified and discussed concepts of other researchers (Glaser, 2002). In addition, the constant
comparative nature of grounded theory enhances the conceptualizing and comparison of insights
as they emerge from the data (Glaser, 2002), which will generate rich data, furthering the
understanding of how active addiction influences adherence.

30
Methods
Methods include the sample, data collection methods, analysis phase, and the ethical
controls put in place to ensure the rigor of the research project. These will be addressed in turn.
Sample. Nine participants were selected from a cohort of clients at Central Interior Native Health
1^

Society

(CINHS) that are living with HIV infection and active addiction. A nominated sample

technique was used by the researcher and coding team 14 to generate potential participants who fit
the study criteria of being in HAART and actively using injection drugs. Potential participants
were then approached by the project researcher to evaluate their interest and readiness to
participate in the project. Participants were required to self-identify as active injection drug users,
and to have been on HAART for a minimum of one month at one point in time, with completed
HIV related laboratory blood work. The definition of active drug user was self-reported.
However, potential participants needed to have reported using illicit injection drugs in the
previous month prior to study admission.15 Additionally, potential participants were asked to
show evidence

of fresh injection "track marks." 17 Adherence to HAART was measured in two

ways: self-reported HAART adherence, and laboratory records. Participants were required to
sign a medical release of information form allowing the researcher access to history of HIV viral
13
Central Interior Native Health Society (CINHS) is a non-profit health clinic for all Aboriginal people and anyone who is on or
close to the street CINHS recognizes the inequality in health status between Aboriginal Peoples and mainstream society, and
strives to restore balance through a holistic approach to health care that promotes physical, spiritual, emotional and cultural
haimony with all Aboriginal people who reside in north central British Columbia
14

The coding team is made up of staff members of the Aboriginal Caucus at Cential Interior Native Health Society (CINHS)
The Aboriginal Caucus is responsible for assisting the staff members at CINHS in learning and incorporating Aboriginal "ways
of knowing" and cultural competencies Each Aboriginal Caucus member volunteered to be on the coding team
15
The time frame chosen tor history ot injection drug use is suppoitcd by the Vancouver Injection Drug User Study (VIDUS,
Wood et al, 2009), and by the reseaich of Strathdce et al, 1998
16

The VIDUS study requires that all potential participants show evidence of fresh track marks as part ot the entrance
requirements into the study cohort (Wood et al, 2009)
Chronic injection diug use can be confirmed by observing track maiks from repeated injections into \eins Tiack maiks are a
lmeai aiea of tiny, dark needle punctuies sunounded by an area of daikentd or discolouied skin due to cluonic inflammation
Track maiks are often found in easily accessible sites, such as the antccubital tossa and foiearms (O'Connor, 2008)

31
load levels.

The requirement of being on HAART for one month and to have completed follow

up lab work provided verification to clients self-reports of HAART adherence. If participants did
not have appropriate lab work completed by their physicians, referrals were made for the
required tests. For participants that reported low-adherence or who were not presently taking
HAART, medical records were accessed to provide confirmation that the participant was at one
time on HAART.
Participant profiles. The demographics of the research participants were as follows: there
were nine total interviews conducted: five females, three males and one person who identified as
transgendered. At the time of interview, five participants stated they lived in stable housing, and
four classified their housing situation as "unstable". For the purposes of this research project,
unstable housing is defined as living in a community shelter, staying at a friend's house or being
homeless. The mean age of the participants was 41.4 years. The mean time that the participants
had been aware of their HIV positive status was 7 years 5 months. The longest known HIV
positive status time was 14 years and the shortest known HIV positive status time was 2 years 9
months. The mean time on HAART was 3 years 4 months. The longest time on HAART was 7
years 9 months and shortest time on HAART was 11 months. Five participants were on
methadone

maintenance treatment at the time of being interviewed. Five participants currently

have an undetectable HIV viral load.20 The range of the most recent CD4 21 count was from 170-

Measunng viral load a month after starting highly-active antiretroviral therapy (HAART) can strongly predict which
individuals will have a viral load below 50 copies/ml after six months of treatment A viral load of less than 50 copies/ml is
considered maximum viral suppression (Smith, Staszewski, Sabin, Nelson, Dauer, Outc et al, 2004)
19

Methadone maintenance treatment is one ot the most widely used forms of treatment for people who are dependent on opiates
Methadone itself is a long-acting synthetic opiate agonist Methadone works by alleviating the symptoms of opiate withdrawal by
stemming the chronic craving for opiates Methadone is usually prescribed one oral dose daily to prevent the onset of opiate
withdrawal symptoms - including anxiety, lestlessncss, runny nose, tearing, nausea and vomiting - foi 24 hours or longer
http //www hc-sc gc ca/hc-ps/pubs/adp-apd/incthadonc-bp-mp/background-contcxte eng php
Viral load is a numerical lcpresentation ot the amount of HIV in youi blood http //www catie ca

32
660. Four participants were up to date with their HIV related care with four participants having
outstanding blood work, and or HIV recommended vaccinations. The mean length of time of
using injection drugs was 19.75 years. The longest time using injection drug use was 29 years
and the shortest time engaged in injection drug use was 10 years. Still, all participants reported
periods of abstinence during their time using illicit injection drugs. The mean age of the
participants when they started using injection drugs was 22.3 years. The youngest age of starting
injection drug use was 11 years and the oldest was 44 years of age.
Number

Gender

Housing

Age

Year of
HIV
diagnoses

Time on
HAART
(years)

Methadone

Last PVL
<40

Most
recent
CD4

Year
started
IDU

Age
started
IDU

A
B
C

F
T
F

u
s
s

30
48
32

2003
1997
2007

Y
Y
Y

10.04.19
10.06.19
10.07.13

580
550
660

1981
1981
1995

11
19
17

D
E
F
G

F
M
F
M

s
s
u
u

47
48
32
58

2008
2003
2001
2007

Y
N
Y
N

NEVER
10.03.01
10.07.27
NEVER

220
260
600
390

1994
1978
1995
1997

31
16
17
44

H
I

M
F

u
s

42
36

2002
2001

2.9
7.9
11
months
1
2.7
2.5
11.5
months
5
4.5

N
10.27.09 170
1988
20
NEVER
N
500
2000
26
Housh lg U =uns1 able, S = stab e

Table 1: summary of participant demographics

Data collection methods Semi-structured, open-ended, taped interviews and a review of the
medical record for HIV viral load levels and CD4 markers were completed. The interviewer used
the four scripted questions (appendix 1) in the initial interview. The interviews were conducted
over a five month period from January 2010 to May 2010. All participants were offered the
opportunity to smudge22 before the interview, and access both a counsellor and Elder

" CD4 cells are part of the immune system and help protect the body from infection HIV attacks these types of cells and uses
them to make more copies of HIV which weakens the immune system, making it unable to piotect the body from illness and
infection Normal CD4 count tor people without HIV is between 600-1200 cells per cubic millimetre of blood
http //aids about com/od/techmcalquestions/f/cd4 htm
The burning ot sage, sweetgrass, and fungus is called smudging it is traditionally used to prepare and puuty a person, place or
thing for a time of openness and truth in the presence of the Cieator (Association of BC First Nations Treatment Piogiams, 2009)

33

immediately following the interview. Nine interviews in total were completed; each lasted
approximately fifty minutes to one hour. The interview process consisted of a revisiting of the
informed consent and a re-explanation of the signed release forms. Once completed, the first
audio recorded interview was transcribed verbatim by the researcher and the remaining audio
interviews were transcribed verbatim by a professional. Each transcript was then proofread
against the audio recording by the interviewer to ensure accuracy. Interview notes were also
taken during each interview to highlight non-verbal messages and salient themes that emerged
immediately during the interview process. Unfortunately, one interview could not be used
because of poor sound quality. However, the field notes taken for the participant were used as
support for themes in the coding process. It is also important to note that this participant declined
a second interview. All participants were provided with a twenty dollar stipend in the form of a
gift certificate to a drug store, grocery store, or donut shop of their choice in Prince George as
compensation for their time.
The interviews consisted of four broad questions: Please tell me your story of living with
injection drug use? Please tell me your story of living with HIV (and injection drug use)? Please
tell me your story of HIV treatment? Please tell me your story of being Aboriginal, HIV positive
and an injection drug user? Each participant was asked the four overarching questions which
were followed with a series of more focused questions to help clarify and probe for greater detail
and understanding. The interview questions were designed to create a comfortable environment
for discussion. So justifiably not all questions were directly related to the research goal of
examining the experience of that active injection drugs use has on adherence to antiretroviral
treatment.

34
Analysis phase. The analysis component of grounded theory begins with the initiation of data
collection, and continues throughout the course of the research project. The researcher employed
a narrative analysis using Microsoft Word and Microsoft Excel software to compare the data sets,
using the three steps of grounded theory: open coding, axial coding, and selective coding
(appendix 2). In order to maximize insight into the lived experiences of the research participants,
parts of the analysis phase were conducted with the assistance of a coding team made up of three
Aboriginal professionals who are working within healthcare in Prince George. I chose to ask for
the assistance of the coding team in the open and selective coding stages because I believe that
for this research to be truly representative of the lived experience of the research participants, an
Aboriginal perspective must be used in the interpretation and analysis of the data. I believe that
while the research is serving a personal purpose of helping me to achieve my requirements for
my Masters degree, it also needs to equally serve the needs of the participants. My work must
represent Aboriginal perspectives and particularly those directly involved in the study honestly,
without distortion or stereotype. It should honour Aboriginal knowledge, tradition, and customs,
and most importantly, it needs to be free of ethnocentric judgment and an interpretation that may
be skewed by my colonial education if it is to be culturally and practically relevant.
Open coding. In the open coding step, effort was made to discover categories through the
conceptualization of data groupings taken from individual interviews. The data was condensed
into categories and assigned themes to assist with grouping. The two phases of open coding conceptualizing and discovering categories, as identified by Strauss and Corbin (1998) were
performed. Conceptualizing involved the breaking down of the data into actions, events,
incidents and ideas, and then giving representative names or themes (Strauss & Corbin, 1998).
This process required an in-depth analysis of the text, word-by-word, line-by-line, and phrase-

35

by-phrase (Strauss & Corbin, 1998). Next, the discovering of categories was completed. This
involved grouping the identified themes into common categories, at a higher and more abstract
level (Strauss & Corbin, 1998). However, before the grouping of the themes into categories was
finalized, a comparative analysis of both the 'properties' 23 and 'dimensions' 24 of each identified
theme was completed (Strauss & Corbin, 1998). Once accomplished, the coding team was asked
to verify the accuracy of the identified categories that emerged from the data. Once the coding
team examined the data set, all necessary modifications were made to the identified categories.
Axial coding. The axial coding process is the second pass through the data, with more
attention paid to the coded themes than the actual data. Axial coding involved the discovery of
relationships between categories and subcategories, with the goal of understanding how
categories related to subcategories in terms of 'properties' and 'dimensions' (Neuman, 1994;
Strauss & Corbin, 1998). Effort was made to review, examine and order the themes by clustering
the themes under the key overarching themes and secondary themes.
Selective coding. The selective coding process is where the incorporation and fine-tuning
of the emerged themes took place. The overall aim of the selective coding process was the
integration of themes at the dimensional level in order to accomplish the three goals identified by
Strauss and Corbin (1998): the discovery of a theory, the validation of the relationship between
concepts, and the detection of any themes which need further refinement. It is at this point in the
coding process where I involved the participation of the coding team. We reviewed three
randomly selected interviews looking for the subtleties of "Aboriginal context" that may have
been overlooked by the researcher. This process involved the identification of selected passages
from each interview and a discussion around its meaning and relation to "Aboriginal context".
23

Properties explain the general or specific characteristics and attributes of a category (Stiauss & Coibin, 1998)

' 4 Dimensions define the varying range of the general propeities of a category (Strauss & Corbin, 1998)

36
Ethical Controls. The high level of commitment to ethics in grounded theory enabled the
researcher to fully immerse himself in the participants' lived experiences in a safe and nonthreatening manner. Immersion permitted the interviewer a genuine attempt to understand the
lived experiences of the participants' own understanding of the identified research phenomena.
However, to be productive, immersion required that a deep understanding and trusting
relationship be developed between the interviewer and participant. In order to achieve this
relationship, several important control mechanisms were put in place: a gatekeeper, ethics
permission, informed consent, confidentiality, and validity checking (Cres swell, 2008;
Havercamp, 2005).
Gatekeeper. In grounded theory, the gatekeeper role is used to help facilitate access to places,
people, events or documents. For the purposes of this project the gatekeeper was intended to be a
staff member from Positive Living North (PLN)

in Prince George. Unfortunately, this role did

not work out as the chaotic lifestyle of the participants, and the busy schedules of the PLN staff
member and researcher made the scheduling of meetings very difficult. Fortunately, the
researcher in his role as a Nurse Clinician at Central Interior Native Health Society has a
respected role in the HIV community, and already has existing relationships with potential
research participants. To ensure participants took part willingly, it is important to note that all
participants were screened by the social worker or addictions counsellor at CINHS. Also, due to
the chaotic lifestyle of the potential participants, it was required to be very flexible in the
screening, selecting, consenting, and interviewing stages. Most interviews were rescheduled
multiple times with the eventual decision made to allow the participants to drop into the
researcher's place at work to see if the consenting and interview could happen immediately.
25
Positive Living Noith is a community-based organization which provides education, prevention and HIV/AIDS support
sciviccs m the Pnncc George legion http //www positivelivingnorth ca/

37
Ethics permission. Permission was attained from the University of Northern British
Columbia ethics committee, the University of Northern British Columbia School of Health
Sciences, Central Interior Native Health Society, and Positive Living North. Small revisions
were made in two areas after initial ethics permission was granted. Firstly, shortly after ethics
approval the researcher received funding to provide a stipend for each of the clients. This
funding was part of a fellowship the researcher obtained through the Universities Without Walls.
The researcher informed the ethics chair of the funding and was given permission both verbal
and via email to continue. Secondly, the role of gatekeeper changed as the realities of the role
were not congruent with moving the project forward. This change was also communicated with
ethics chair and supervisor prior to commencement.
Informed consent. Informed consent was obtained from the participants prior to
commencing and throughout the interview. Clients were informed of the reasonably foreseeable
factors that might influence their decision to participate in the study, including the potential risk
of triggering relapse. Furthermore, voluntary participation was extensively discussed with
potential participants', as to fully inform them of their right to withdraw from the research study
at anytime. Additionally, the social worker or addictions counsellor met with potential research
participants to discuss with them if they were comfortable participating in the research project, or
if the existing relationship with the researcher was a coercive factor in their decision to
participate.
Confidentiality. The level of detail and specificity that is generated in qualitative research
can often make the guarantee of confidentiality difficult (Havercamp, 2005). Efforts were made
to protect the identity of each participant by numerical coding of interviews and the changing of
identifiable names and locations that were revealed during the interviews.

38
Validity. The credibility of the research was checked by using peer examination and
member checking. Peer examination used the coding team as a source of validation by allowing
for analytical probing by the coding team, which helped uncover and explain different
perspectives and assumptions by the researcher (Lincoln & Guba, 1985). Peer examination also
allowed for the opportunity to test and defend emergent themes for plausibility (Lincoln & Guba,
1985). Member checking is when data, analytic categories, interpretations and conclusions are
tested with members of those groups from whom the data were originally obtained (Lincoln &
Guba, 1985). This was done after the final draft of the results was written. All of the research
participants were given a copy of the results and asked to give input for accuracy and elaboration.
The transferability or the extent, to which the findings of the research can be generalized
to a larger population, was evaluated by the use of a nominated sample, and a dense description
of the research findings. Dense description is the describing of a phenomenon in sufficient detail
so that evaluation about the extent that the study's conclusions are transferable to other times,
settings, situations and people (Lincoln & Guba, 1985). Chapter four is part of the researcher's
use of dense description, as chapter four creates a larger more in-depth picture of the research
participants lived experience of HIV, and injection drug use outside of adherence to HAART.
The dependability of the research was addressed by using a dependability audit and the
dense description process mentioned previously. How the dependability audit was used to
evaluate the accuracy of the findings and to evaluate whether or not the findings, interpretations
and conclusions are supported by the data (Creswell, 1998; Lincoln & Guba, 1985). The external
audit was completed by the thesis supervisor, Dr. Josee Lavoie.
Finally, conformability was guaranteed by making use of analyst triangulation which
allowed for the examination of findings from four different perspectives. Analyst triangulation

39
was completed with the aid of the coding team. The purpose of analyst triangulation is to check
selective perception and illuminate any blind spots that any one researcher may have when
analyzing data (Creswell, 1998; Lincoln & Guba, 1985). Additionally, the use of personal
reflexivity by locating myself in Aboriginal research by writing a positioning statement was used
to ensure conformability. By using reflexivity the researcher disclosed how his background and
position affected what he choose to investigate, the path the investigation took, the methodology
chosen to conduct the research, and the framing and communication of conclusions" (Lincoln &
Guba, 1985; Malterud, 2001).
Limitations of project
There are three primary limitations to this study. First, although the study participants
were of varying ages, both male and female, and had a range of experiences, due to the relatively
small sample size, and the fact that all participants were engaged with healthcare providers, the
findings of this study may not be representative of all Aboriginal people living with HIV and
active injection drug use in Prince George, BC. The small sample size, while representing a large
proportion of the estimated population of Aboriginal people living with HIV, active injection
drug use, and on HA ART in Prince George, may not have generated all of the issues facing
people in similar situations. The experiences and needs of Aboriginal people who are current
injection drug users with little contact with community services may be under-represented in the
research findings. Additionally, it is estimated that 27% of people living with HIV do not know
they are infected with HIV (Canadian AIDS Treatment Exchange, 2009). Therefore, many more
potential participants who are unknowingly living with HIV and using injection drugs in Prince
George could greatly influence the research findings.

40
Secondly, that fact that the researcher is also the primary HIV nurse for all of the
participants may have influenced the results. The idea of "self-censorship" may have been
introduced into the interviews. From the researcher's perspective as a community HIV nurse
clinician, relationships with patients follow a similar trajectory. Initially, the patient is reluctant
to disclose personal and pertinent health information due to a lack of trust. As the relationship
develops, more information is shared and a level of openness occurs based on trust that reaches
full disclosure. However, as the relationship continues to develop, patients will reach a point
where they do not want to "disappoint" their health care provider, and therefore withhold - self
censorship - information, possibly resulting in compromised care. This situation is easily
recognizable and addressed by the nurse by re-stressing the importance of communication and
that no harm to the relationship or care will be incurred with full disclosure. For the purposes of
this research, the researcher stressed to the participants the importance of honesty and that no
change would occur in nurse/patient relationship or the care they would receive.
The third limitation of this study pertains to its qualitative methods, which rely heavily on
the interpretation of interviews. The fact that the researcher is Caucasian and the participants
were all Aboriginal may have led to interpretation errors during the identification of themes.
Grounded theory implores in-depth analysis and interpretation of interviews, which requires an
astute understanding of the participants. The use of the coding team - which was made up of
Aboriginal professionals - was an attempt by the researcher to minimize this potential limitation.

41
Chapter Four: Results -Participant Responses to Questions
Introduction
The purpose of this chapter is to provide the reader with a greater insight into the daily
lives of the research participants in terms of how HIV and injection drug use are a part of their
everyday lives. This chapter is not intended to be analytical in nature. What this chapter does
provide is a demographic overview of Prince George, British Columbia in terms of population,
healthcare and community services, and HIV specific health services. Next, a sample of the
research participant's answers will be provided verbatim in an attempt to provide the reader with
a sense of intimacy with the participant's mental, spiritual, physical and emotional connection to
their experience with injection drug use and HAART within the community of Prince George. A
detailed analysis and discussion will be provided in chapter five.
Demographics of Prince George
The city of Prince George proper contains several areas: South Fort George, the Hart, the
residential and light industrial neighbourhoods north of the Nechako River, College Heights, and
the Bowl - an area of the city that includes most of the city and the downtown.
Prince George is home to 83,225 people, with Aboriginal people accounting for 10.6%
(8,850) of the total population within city limits (Statistics Canada, 2007). The average annual
income in Prince George is nearly $40,000 (Statistics Canada, 2007). The average cost of
purchasing a home in Prince George in 2007 was $240,245, and the average cost of renting a
home in 2007 was $650 monthly (Statistics Canada, 2007). According to British Columbia
Statistics, 3.7%o of Prince George residents are receiving income assistance, as compared to 1.7%
of all British Columbian residents (British Columbia Statistics, 2009). A single person who is
expected to work but is on income assistance receives $638.92 per month. A person who is

42
labelled with persistent multiple barrieis 2 receives $686 84, and a single person with a disability
that prevents him or her from working receives $940 69 (Province of British Columbia, 2010)
The health and community services that are offered in Prince George include the
University Hospital of Northern British Columbia (UHNBC) The hospital has 209 acute care
beds which include 10 combined intensive care unit/critical care unit beds, 18 paediatric beds, 21
maternity beds, and 15 beds in the rehabilitation unit In addition, there are five full time
operating rooms There are also 72 extended care beds in Jubilee Lodge, as well as 37 chemical
dependency beds There are approximately 120 physicians on staff at UHNBC, of whom, 55 are
specialists Public health services offered in Prince George include women's health services,
children and family services, communicable disease prevention and control, dental prevention
services, hearing services, nursing support services, school and youth health, and speechlanguage services Mental health and addiction sei vices include the Community Response Unit
(CRU), the Community Acute Stabilization Team (CAST), the Community Outreach and
Assertive Service Team (COAST), Inpatient and Intense Adult Mental Health Services, Adult
Withdrawal Management Unit (Detox), Methadone programs, eating disordet clinics, Adolescent
Psychuti IC Assessment Unit (APAU), Youth Mental Health and Addiction Services, and the
Nechako Youth Piogram Additionally, there are seven community shelters in Prmce George
There is one co-ed sheltei in downtown Prince George serving anyone over the age of 19 Theie
is one shelter serving adult males, and one shelter serving males tiansitiomng out of correctional
institutions Three shelters serve women - two of which can accommodate women with their

' 1 he Persons with Persistent Multiple Barutrs (PPMB) category piovides assistance to clients who have long-term
barriers to employment that are not expected to be overcome in the shoit term despite all reasonable steps by the
client PPMB clients aie exempt fiom employment obligations
(http //www gov be cd/meia/onlme_resource/employment planning and exempttons/ppmb/)

43
children. Finally, there is one shelter serving children who are in the care of the Ministry of
Children and Family Development.
Prince George has a regional correctional centre for adults sentenced in provincial court.
There are a variety of internal and external programs available for inmates. These programs
include substance abuse management, violence prevention, respectful relationships, breaking
barriers (cognitive skills), alcoholics / narcotics anonymous, vocational programs, educational
programs and Native brotherhood.
In terms of services for people living with HIV in Prince George, there is one health
clinic - Central Interior Native Health Society (CINHS) - that specializes in HIV care. This
clinic serves all Aboriginal people and anyone who is living on or close to the street. Moreover,
CINHS serves all people, regardless of ethnicity or socio-economic status who are living with
HIV. There is one infectious disease specialist who provides services to all residents in Northern
British Columbia. This specialist works both out of his office, and at CINHS. Additionally,
Prince George has one AIDS service organization that acts as a drop-in centre for people living
with HIV and provides social support. As well, there is an AIDS prevention program operated
by the Northern Health Authority, with services including a needle exchange, immunizations,
referrals, and nursing assessments. Finally, several of the downtown pharmacies provide daily
witnessed dispensing of methadone and HAART.
Regardless of the above listed services in Prince George, it is estimated that 10,00015,000 people living in Prince George do not have a family physician (Godwin, personal
communication, 2011). Additionally, according to the British Columbia College of Physicians
and Surgeons as of February I s , 2011 there are no physicians in Prince George accepting new
patients (College of Physicians and Surgeons of British Columbia, 2011).

44
Interview Results - How Prince George reflects in participants' stories
With the previously mentioned demographical description of Prince George in mind, a
sample of the responses provided by the participants to each of the four broad questions will be
provided to help understand the context of the participants' realities of living with HIV and
active injection drug use in Prince George.
Living with HIV and injection drug use
When asked to reflect on their present day feelings of living with HIV and injection drug
use, none of the statements expressed by the participants reflected on the city of Prince George.
Instead, responses indicated a more internal understanding of living with HIV and injection drug
use, as demonstrated by the following quotes,
Participant 009: "Well, [injection drug use] plays a really predominant role in my life.
It is something that I think about all the time. Uh, it's my partner in life now. It is
somebody, it is something I live with every day, it's something I think about every
day. Now if I'm not careful, I can let it kill me, but if I do this properly, I can live
longer and have a somewhat normal life and be healthy."
Participant 004: "Ya, I do [have HIV]. And that's because of the people around me
keep throwing it in my face, because I've always been honest about having HIV".
Participant 005: "No. No, not at all [thoughts of HIV]. Um it just comes in flashes
because I try to um, push that part of my life away from me and try not to dwell on it
because I find if you dwell on it, um you only harm yourself. Um, so I.. .try to um,
avoid lots of thought about HIV. The only thoughts that come to me about HIV is
when I'm at um, [AIDS service organization]... doing classes and I try to read into it
and stuff like that about my body and how to care for myself and how to care for my

45
own body and my body functions to learn about HIV um, to protect myself and to be
able to live longer. Because at one time, I didn't give a fuck about living at all. When
I first found out I had HIV. I didn't give two shits about anything."
HIV Treatment - Antiretroviral medication (HAART)
When asked to tell their stories of HIV treatment, the statements expressed by the
participants that reflected on the city of Prince George included references to the University
Hospital of Northern British Columbia, the AIDS service organization (ASO) in town and the
community shelters,
Participant 005: "Well, I had several doctors come in, I believe [the doctor]... was
one of them, into Prince George Hospital, I mean Prince George Hospital as per se
itself is not very fuckin' helpful in any way but the doctors were helpful. Um, [the
doctor]... and [another doctor]... and a few others um, and when they came in and
administered certain drugs to me they helped me a great deal and they helped me to
start um, uh, heal. And built my antibodies and helped me to walk again and hold
cups again and it brought a lot of my health back."
Participant 009: "You know what, I don't even have to dream it, you know I got
[AIDS service organization or ASO]...um, and inside [ASO]... is [staff]..., [staff]...,
[staff]... and me and the fact that it's a phone call away if I ever feel kind of shaky.
Then there's here, [Aboriginal health clinic]..., there's you [Nurse]..., there's
[Nurse]..., there's [Doctor]..., there's the ladies at the front desk, who when I call
sometimes, they can tell by my voice I'm kinda like not in a really very stable place,
they say hang on, we'll hook you up with somebody, we'll get somebody. And you
know what, I'll sit there and go whoa, okay and these ladies are working. They're

46
awesome. They're trying to find somebody for me to talk to or hook me up with
somebody right now who can get me through this."
Participant 005: "The house that I have, the stable provisions that I have, the home
that was provided me by [community shelter]..., the regular checkups that they
provide me, like come in and check on me. Like um, certain individuals like [staff]...
and that, that come in and check on me, like she'll come upstairs and check on me
four times a day just to make sure I'm okay."
Participant 006: "Well having support from the [ASO]..., having support from
[Pharmacy]..., you know, them giving it to me, having support from [Aboriginal
health clinic].... I don't know a lot about the meds, I just know they're helping me."
Participant 001: "Eventually I would like to get my methadone where I get carries
because having to come down town everyday was putting myself at risk of using
again, it gets stressful having to go in every single day to the pharmacy."
Participant 005: "Staying in the home that I have and um, the amount of support I get
from [community shelter]..., helps me stay clean. I mean, because um, they interact
with me quite a bit in a lot of stages in my life to help me obtain things 1 need in my
life like my false teeth, um, generally help me with Welfare so I don't get into a
depressed mood and in a state of anger and that helps me a lot from turning to drugs."
Unfortunately, the research participants also pointed out those specific demographics of
Prince George - the concentration of public housing, affordable housing, and shelters located in
the core area of town where drug dealers are located - that contribute to using injection drugs.
For example,
"Carries" refers to the ability to pick up methadone for more than one day at a time Usually, methadone is
prescribed as "daily witnessed ingestion". Once a methadone patient earns tiust with the piovidei the next step is to
give the patient methadone "carries "

47
Participant 006 "Drug logging28, their talking, at [community shelter]

where I live,

they're talking, you know, I'm going to go out and I'm going to get a rock29 and this
or that Oh I got so high the other night you should've seen me, you know, they know
they just talk and talk about drugs, talk about drugs that's all they do It's hard to get
away from it You can't go into your own room and have alone-time There's
nowhere to go "
Participant 004- "Ya, um, being around people that uh I'm around all the time
They're a big trigger Because everybody I'm around is on drugs, and that's where I
live And uh when even when we try to sleep there's people outside our windows uh
yelling up at one of the girl's place because she does sell rock so uh them constantly
yelling at her window is a big trigger and plus I live next door to a Laundromat, um,
slash broken down apartment building wheie they sell drugs out of too and they're
constantly yelling up to that place, to a dude's place theie for them to let'em m, open
the door and that is a big trigger Uh, so ya, just being where I'm at is a big tngger "
Participant 006 "The downtown aiea Being around people, people talking, drug
logging, you know seeing it, healing it, smelling it You know "
Participant 008 "Downtown Well, actually not so much downtown anymore, where
I live I live right on [street name]

and [street name]

, I got four ctack shacks3

suriounding me So wheie I live is pretty bad Downtown's actually cleaned up It's
actually really not bad down here anymoie like it used to be It was pretty bad "
Participant 001 " lea\ mg [city]

and being in a different place did help, where I

did not know other people who did drugs That's what kept me clean was being away
28
19

Diug logging is a slang term used in Prince George when people talk about using illicit diugs
Rock reteis to a slang teim for ciack cocaine (http //www urbandictionaiy com/define php^teim lock)
Crack shack is a slang term used foi a lesidence wheie illicit diug useis can purchase and use illicit drugs

48
from [city]... and all my peers that 1 knew, dealers, prostitutes, and the people that
hang downtown, so my year away from [city]... after I went a-wall was uhm.. .time
for me to get clean and I only did that because I did not know anybody in that area
and so that's what kept me clean."
When asked how HIV treatment could work better for them, many participants spoke of
the cultural dynamics of the Prince George community,
Participant 005: "How? By not treating us like we're a fuckin' infection or centering
us out or yelling out in the fuckin' emergency rooms for example, 'oh, okay, you got
HIV, let's go over here.' Like without fucking care that other people hear about it,
because the stigma just in general about us fucking being HIV and what goes in a
person's first fuckin' thought, oh, stay away from them. I mean the way we're
directed, the way we're handled is all wrong."
Participant 008: "Big time here. Here it's a big time thing [stigma], especially if
you're a drug user on the streets down here and they find out you're positive.
Especially (who's they?) people that are living like down in this area. Especially if
you're a working girl (mhm) like shit happens. Like people have been beat up. Like
they'll be jumping into a John's vehicle and people will be yelling, 'Don't take her,
she's HIV positive, you know, she's got blah, blah, blah,' you're labelled. Right?
And then you're pushed away. Right. But now, that was a few years ago but now I
see that almost 80% of the street people down here are positive so now it's like, it's
more of, they just stick together and the rest stay away. You know, they just literally
stay away from you. It's fear. Right? They don't want it and 1 can understand they
don't want it. But people are misinformed. Like they don't want to hug you. Can I

49
get a drink off your pop, like oh my God, it's the end of the world, right. It took me
four years to educate my aunt cause she wouldn't even let me make her a coffee
cause she, you know, and it took me quite awhile to educate her. You know what, if I
make you a coffee, it's alright. You know, so I helped her out, lack of education,
plain and simple."
Aboriginal Traditions in participants' lives.
When asked about Aboriginal traditions in their lives, a few of the participants responded
that they considered Aboriginal traditions an important component of health in their lives.
However, no references to the city of Prince George or its community services can be found
within the stories told by the research participants. When asked to speak about living with HIV,
active injection drug, and being Aboriginal, several strong statements that reflected on the
community of Prince George emerged,
Participant 008: "I think that because of and I know that people hear this a lot, but
nowadays the way we were raised, who we are, I was raised to be a drug dealer. I
was raised around, like I remember watching people shoot up when I was 10 or 11
years old. I was raised in this environment and every Aboriginal family 1 know,
every person I talk to was also raised in this environment, around alcohol, drugs and
violence. So how do you fix something that has been ingrained in you since you were
a baby? So that's what they need to figure out, is how can we reprogram an entire
race of people. It's pretty much. And I've been thinking about it and I sit at home and
think about it and 1 don't know. The only thing that works for me is like I said my
mom. Like she's an old traditional woman, she was raised in the bush and I have
enough respect for her that I will stay clean over the summer and bring her berry

50
picking and do all these things she needs to do because I have that respect for her but
90% of us haven't got that respect anymore. We've lost it."
Participant 005: "I mean not all of us live the same way everybody else does, as say
you honkey, or other people. We don't get the same fuckin' 9-5 life as everybody
else. We don't get that as being Aboriginal. We're pushed into fuckin' alleys and
cricks and crevasses in the road and we don't get a normal life and everybody else
has a lot of us around here. But as being Aboriginal, the most beneficial way is when
we have a stable home, a stable home where our rent is sent direct, where it's a setup
like that are made easier for us and where we don't have to walk so far and stuff like
this because we don't have the same energy as everybody else and everything else."
Participant 005: "Doctors should be re-fuckin' trained and so should nurses where
HIV patients are concerned and Aboriginals in general. That we're fuckin' people
like everybody else and we were here first before all of them, you guys invaded us,
you guys infected us. With not just HIV but with everything else. It's been a lot of
abuse. That's the way I feel, that's what I have to say. Not only that, you guys got to
show more love and concern where we're concerned. I mean why do you think some
of us go out and do what we fuckin' do when some of us even, like other people I've
seen infect other people and I don't how they can just go around infecting other
people without fuckin' concern for the other person's life but I guess that's because
they've been shown nothing but the same fuckin' love and concern that they've been
shown from other people in the community."
Participant 009: "But you know what, like you said, my life has not exactly been
very easy because I'm an Aboriginal injection drug user and then you throw HIV in

there and people are like, 'Oh my God' and you know, I've actually had people get
this look on their face like holy frick and they want to run. And I'm like; you know
that doesn't make me feel very good. It makes me feel very, very small. It doesn't do
very much for my own personal value either cause it doesn't make me feel very good.
It makes me feel less of a person and it hurts."
Participant 006: "It's hard because, you know, people look at me and they judge right
away. 'Oh, she's a, she's a crack head, she's a hooker, she's probably got HIV, she's
probably got AIDS' and when they really do find out they judge me and uh, it's hard,
I don't like it. It hurts."
Conclusion
This chapter provided a verbatim narrative of the participants' lived experiences in
terms of their realities of being Aboriginal and living with HIV and active injection drug
use in Prince George, British Columbia. This chapter reviewed the demographics of Prince
George, and explored current health and service organizations in the community. It then
provided direct quotes from the participants that examined how they perceive themselves
fitting into the demographics of Prince George, in terms of the four broad research
questions. This chapter provided a brief glimpse into the lived realities of each participant,
and provided the reader with a better understanding of the issues faced by participants
while living in Prince George. Chapter five will discuss the findings of this research project.

52
Chapter Five: Discussion of the Findings
Introduction
The main purpose of this study was to identify how healthcare providers can better
support Aboriginal people who are injection drug users in their goal of achieving HAART
adherence rates over 95%. The Grounded Theory design of the study resulted in nine narrative
scripts which explored the lived experience of HIV and injection drug use of each participant.
The following chapter will first give a brief overview of the participants' insights into living with
HIV and active injection drug use. It then discusses the salient points uncovered in the interviews,
and how these points relate or contrast to what is known in current academic literature.
Additionally, when available, Aboriginal specific literature is discussed to help identify
differences in Aboriginal and non-Aboriginal populations in terms of the pertinent discussion
points. The main areas that will be discussed are Living with HIV and injection drug use; HIV
treatment ~ Highly Active Antiretroviral Therapy (HAART); and HIV, IDU, and being
Aboriginal.
Living with HIV and injection drug use.
In order to gain an understanding of the lived experience of people living with HIV and
injection drug use, the first question asked of participants was, "What is your story of living with
HIV and injection drug use?" The resonant statement articulated was that HIV and injection drug
is always on participants' minds. However, when the actual statements of the research
participants were analyzed, it is not clear if they meant that HIV and injection drug use was on
their minds all the time, or if it was only HIV that was front and center in their thoughts.
Participant 009 spoke of the predominant role that 'it' plays in her life and that if she "does not
play it safe, it can kill her". The notion of "playing it safe" could reflect either on HIV or

53

injection drug use, but she went on, and spoke of "doing this properly" in order to "live a normal
life." The embedded reasoning suggests that she was talking only about her HIV. Participant
001 only spoke of HIV and the burden of taking medication and made no mention of injection
drug use and the role it played in her life. Participant 004 spoke of not being able to forget about
HIV because she was consistently reminded of it every day by her peers and the physical
environments she visits - specifically, AIDS service organizations. Participant 003 stated a
similar coded message when he talked about how he has "it", when discussing his roommate's
knowledge of his HIV status. The two clients who spoke about injection drug use only spoke
indirectly about it, as exampled by participant 008, who commented that HIV affected
everything she did from sleeping to the types of food she ate, to how she disposed of her
injection equipment.
This avoidance of recognizing living life with both HIV and injection drug use can also be
seen in the statements of the two participants who stated that HIV and injection drug use were
not on their minds every day. Participant 005 spoke of only thinking about HIV in flashes and
that she tried to avoid thinking about HIV. She made no mention of injection drug use. A similar
theme was expressed by participant 006, who stated that she could forget about her HIV
infection but knows it is in her body and that she only becomes outwardly aware of living with
HIV when she is sick.
HIV treatment - Highly Active Antiretroviral Therapy (HAART).
This section explores four broad categories: the importance of treating HIV, enablers /
facilitators and to adherence, barriers to taking HAART and participant recommended changes to
HAART adherence support for better outcomes.

54
The importance of treating HIV. When asked if treatment for HIV was important, seven
participants responded resolutely yes. When asked to expand on why it is important to take
HAART, the underlying theme that emerged was that the participants wanted to live - more
importantly - participants wanted to live healthier lives with greater quality than they were living
before they started HAART. Participant 009 illustrated this idea of a "better life" when he spoke
of what he hoped HAART would do for him in his statement, "I wanted quality of life and
[HAART]... was also going to help me extend my quantity of life." Additionally, participants
commented on the urgency or 'last chance' feelings that they had when the option of treatment
was presented to them. Participant 008 described watching her cousin die from HIV and not
wanting the same outcome for herself. Although this participant identified that she relapses on
illicit drugs often, and will miss taking HAART, she claimed to recognize the importance of
treating her HIV. A few of the participants also reported that even with the negative side effects
associated with HAART, the benefits gained by taking the medications far outweigh the
nuisances of nausea and diarrhoea. An interesting insight on the management of HAART-related
side effects came from participant 006, when she said that she was "scared" of the potential side
effects, but then realized that if she could use illicit drugs and deal with the effects of being high
and "tweaking,"

then she could manage the possibility of the side effects from HAART.

The beliefs and ideas presented by the research participants aligned closely to what can
be found in the current academic literature examining peoples' perceived benefits, in terms of the
quality of life for people taking HAART. Firstly, a study by Watt and colleagues (2009) on the
facilitators of adherence to HAART examined 36 patients taking HAART for the first time. The
study found that patients were more motivated to continue with HAART if their health status
11
Tweaking is a slang expression used for diug-induced paranoia, peaking on speed, or despeiately searching for ciack Often
people who aie tweaking pay incieased attention to trivial tasks http //alcoholism about com/od/slang/g/iwcaking htm,
http.//www uibandictionary com/define php?teim=tweak

55

improved once commencing HAART. Furthermore, Ware and colleagues (2006) conducted 214
qualitative interviews with 52 HIV positive active drug users with the intent of examining how
social relationships and stigma affected adherence to HAART. The study found that people
living with HIV worked to create new personal identities that reflected the improved health
status that HAART had helped them achieve (Ware, Wyatt, & Tugenberg, 2006). Interestingly,
the study also found that as people successfully navigated HAART and built new identities
reflective of improved health, adherence could be compromised, as the "strictness" of HAART
started to interfere with other interests. Therefore, Ware and colleagues (2006) demonstrated that
in order to be successful with long term adherence, the balance between life and health must be
considered. The idea of creating new identities reported by Ware and colleagues are also
supported in this research study, as exampled by Participant 006 when she reported that she
realized that if she could manage a life of addiction and the resulting effects, then she could
surely manage the side effects of HAART. Participant 006 was able to bridge the knowledge that
she has gained from many years of injection drug use to that of how she can be successful on
HAART. Flowers, Davis, Hart, Rosengarten, Frankis and Imrie (2006) conducted interviews
with thirty Africans living in the United Kingdom, and found that HIV had the ability to take on
a "master status" persona and obliterate the personal identification of people living with HIV. A
person's status and self-identity were replaced with a social label that was, in part, constructed
by the terminology that follows people living with HIV: antibody testing, patient viral load, and
CD4 count (Flowers et al., 2006). In India, a study examining the barriers and facilitators to
successful HAART involving 60 people receiving HIV primary care (33 on HAART, 27 not on
HAART), found that the most frequently perceived benefits of high adherence were HIV disease

56
management, better overall health, living longer and gaining weight (Kumarasamy, Safren,
Raminanai, Pickard, James, Krishnan et al., 2005).
Enablers /facilitators of HAART. When asked, "What helps you remember to take HAART?"
the participants answered: fear; trust in their healthcare provider; having a routine they follow;
and the support they receive from AIDS services organizations, family, and friends.
Fear. Fear - understanding the health consequences of what missing a dose could cause was the most commonly reported theme that emerged when participants were asked, "What helps
you remember to take HAART?" When asked to elaborate on their understanding of the
consequences of not taking HAART as prescribed by their physicians, three participants spoke of
fear of becoming resistant to HAART, two spoke of the fear of dying, and one participant spoke
of fear of acquiring opportunistic infections

that could result from poor adherence.

Participant 009 described the connection he associated between life and death with his
medications when he said matter of factly, " Being scared
sick

fear of dying, fear of getting

fear of my body just going okay you know what, you had your chance, bye, and just

shutting down on me." Participant 008 and 009 both shared an expressed commitment to taking
HAART: one perceived HAART as an opportunity for improved health, while the other viewed
it as a "last chance" at life. Participant 006 and Participant 004 both spoke of how they feared
becoming resistant to their particular HAART medications. The thought of having to take more
pills as a consequence of poor adherence was motivation to help them remain adherent.

v

Opportunistic infections occur at different stages of HIV infection Examples of opportunistic infections m the early stages of
HIV include tubeiculosis, malaria, bacterial pneumonia, herpes zoster, staphylococcal skm infections and septicaemia These aie
diseases that people with noimal immune systems can also acquire, but with HIV, they occui at a much higher rate It also takes
longer for a person with HIV to recover from such infections than it takes tor someone with a healthy immune system
http //www aveit org/hiv-opportumstic-infections htm

57
Participant 006 elaborated that she had spent three months working on becoming adherent and
that she did not want to "waste" that effort. Participant 004 summed up her fear of having to
switch HAART regimes when she expressed the "horror" she felt when she thought about how
other people living with HIV need to take multiple pills, multiple times a day. Finally,
Participant 001 described that her feelings of fear were imbedded in the possibility of acquiring
opportunistic infections from the resulting fall in CD4 cell count from poor adherence.
The statements of the participants showed a clear link in their understanding of the
importance of high adherence to HAART, and the quality of life and decreased morbidity they
could expect to receive. The participants made the connection between low adherence to
HAART and the accelerated progression of HIV. However, the connection that was not spoken
of by the participants was the associated morbidities that continued injection drug use could
cause in relation to their HIV and health status. This missed connection could be attributed to a
number of factors, including but not limited to: denial of addiction, lack of addiction treatment
programs, lack of access to health services, and lack of knowledge of the negative consequences
of continued injection drug use. Additionally, the relationship between the interviewer and the
participants must be considered as the participants may have felt that by admitting the connection
between continued injection drug use and their health status, they might "disappoint" the
researcher, and possibly influence future care received from the researcher in his role as HIV
nurse clinician.
In examining the literature, while unable to identify any Aboriginal specific health
consequences, there was an abundance of literature that addressed the potential morbidities that
could affect the quality of life of people who are dedicated to HAART, but who continue to use
injection drugs. A 30-month longitudinal study conducted by Baum, Rafie, Lai, Sales, Page and

58
Campa (2009) on 222 people living with HIV, found that independent of HAART, people who
actively injected crack-cocaine had an accelerated decline of the CD4 cell count and an elevated
HIV viral load count - to levels considered diagnostic of AIDS. Palepu, Tyndall, Yip,
O'Shaughnessy, Hogg and Montaner (2003) looked at 578 people living in British Columbia
who were prescribed HAART from 1996-2000, and found that people who continued to use
injection drugs were less likely to achieve maximum HIV viral suppression. Lucas, Gebo,
Chaisson and Moore (2002) interviewed 695 people living with HIV to study the effects of drug
and alcohol abuse on HAART treatment outcomes. They found that drug use was strongly
associated with worsening adherence rates, decreased HIV viral suppression, and blunted CD4
cell increases. Lloyd-Smith, Brodkin, Wood, Kerr, Tyndall, et al., (2006) studied the impact of
HAART and injection drug use on the life expectancy of 2003 participants in the HOMER and
BART studies in Vancouver, British Columbia. They found that people who were infected with
HIV and used injection drugs had an additional 23.0-24.5 years of life expectancy at age 20; as
compared to 38.9 additional years of life expectancy for people taking HAART who did not
inject drugs (Lloyd-Smith et al., 2006). These findings suggest that there are competing causes of
death for people who are HIV positive and who use injection drugs. Tyndall, Craib, Currie, Li,
O'Shaughnessy and Schechter (2001) found that the leading cause of death for people who were
HIV positive and used injection drugs was HIV-related illness - including advanced HIV disease,
Pneumocystis carinni pneumonia, and TB - which accounted for 34% of total deaths. Other
causes of death were overdose 25%, accident 4.6%, bacterial infection 20%, liver failure 12%,
suicide 4.6%, and homicide 3%. Lucas, Griswold, Gebo, Keruly, Chaisson and Moore (2006)
looked at illicit drug use and its effects on HIV disease progression in 1,851 people on HAART
who were classified as non drug users, intermittent drug users and persistent drug users. They

59
found that when compared to non drug users, intermittent drug users had a twofold increased risk
of death and persistent drug users had a threefold increased risk of death (Lucas et al., 2006).
Furthermore, Lucas and colleagues found that persistent drug users had a twofold risk of
developing new opportunistic infections as compared to non drug users (2006). Thorpe,
Frederick, Pitt, Cheng, Watts, and colleagues (2004) studied the effects of drug use on HIV
disease progression in 1148 women living with HIV and with a history of drug use. The study
found that when compared to non-drug using women, women who used drugs had a higher risk
of developing opportunistic infections, specifically herpes, pulmonary tuberculosis and recurrent
pneumonia (Thorpe et al., 2004). Cook and colleagues (2008) examined crack-cocaine use and
HIV disease progression among 1,686 HIV positive women. The study found that persistent
crack-cocaine users were greater than three times more likely than non-users to die from AIDSrelated causes, even when controlling for the use of HAART, problem drinking, age, race,
income, education, illness duration, study site, and baseline virological and immunological
indicators (Cook et al., 2008). In terms of opportunistic infections, Cook and colleagues (2008)
found that persistent and intermittent crack users were more likely than non crack users to
develop opportunistic infections. Mientjes, Vanameijden, Vandenhock and Coutinho (1992)
found similar results in a cohort of drug users in Amsterdam, in that, the risk of bacterial
pneumonia was considerably more in HIV infected drug users compared to HIV infected nondrug users. Selwyn, Alcabes, Hartel, Buno, Schoenbaum, et al., (1992) looked at the clinical
manifestations of HIV in people who used injection drugs and people who did not use injection
drugs and found that injection drug user's progress to AIDS was at comparable rates to non-drug
users. However, Selwyn and colleagues (1992) found that injection drug users had substantial

60
pre-AIDS morbidity and mortality, most notably from bacterial infections, as compared to nondrug users.
Trust in their healthcare provider. The trust that participants had in their healthcare
providers stemmed from an innate confidence that their health care provider was telling the truth,
in that HAART was needed to stay alive. Participant 006 remarked that HAART was her lifeline
and that her healthcare provider was 100% responsible for giving her this information.
Participant 005 spoke of how her healthcare provider constantly conveyed a steady message,
which was to continually stress the importance of HAART and how HAART would only
continue to work if she made it part of her life. The common opinion of having a trustworthy
healthcare provider by the participants was summarized by Participant 009, when he stated that
he was sure that his health care providers were telling him to take HAART because it works, and
that the healthy changes he felt in his body were evidence enough for him to continue taking
HAART. The participants reported that by trusting the advice of their health care providers, it
allowed them to overcome a lack of knowledge about the side effects and long-term implications
of HAART.
A review of the literature found evidence to support the participants' claims that a
trustworthy healthcare provider is essential in maximizing adherence to HAART. A study by
Watt et al. (2009) found that research participants all reported and appreciated the information
they received on taking HAART and the openness of staff in addressing their problems proved
helpful in committing to, and sustaining adherence to HAART. Additionally, Alfonso, Geller,
Bermbach, Drummond and Montaner interviewed 20 patients on HAART at an urban outpatient
infectious disease clinic and found that medical professionals were integral to the successful
adherence to HAART (2006). Alfonso and colleagues showed that patients' confidence in the

61
care they received and their belief that they received a high level of expertise was critical to
maintaining their commitment to adhere to HAART (2006). What's more, the research
participants stated that it was easier to adhere when care providers were accessible, available and
when they felt genuinely liked by their care providers (Alfonso et al., 2006).
The literature on trust among Aboriginal people and healthcare providers is limited, but a
connection to the effects of colonization and the resulting mistrust of not only healthcare
providers but all of Western society must be understood. Pointers on how healthcare providers
could build trust with Aboriginal people were found in the literature, including the offering of
traditional health and wellness programs within conventional healthcare services (London,
LeBlanc & Aneshensel, 1998). Jackson and Reimer found that Aboriginal people often wished to
be more involved in decision making about treatment options, and wanted to feel that healthcare
providers spent a sufficient amount of time with them to accurately communicate treatment
information (2005). Aboriginal people also valued the option of deciding how much involvement
they had in health decisions, in that, at times they wanted the healthcare provider to make all the
decisions and at other times they wanted to make the decisions (Jackson & Reimer, 2005).
Finally, in terms of HIV specific care, a strong relationship and recognition of the healthcare
provider being an expert in HIV care could be facilitated if the healthcare provider was able to
provide sensitive and clear information (Marelich, Johnston-Roberts, Murphy & Callari, 2002).
Daily routines. In terms successful adherence to HAART, five of the participants
considered it vital to have developed a routine that incorporated taking a pill into their everyday
lives. When asked to elaborate on their routine, two of the participants commented on the length
of time that it took to remember to take HAART daily. More in depth answers were offered by
three participants who were eventually able to remember to take HAART every day, not simply

62
because they tried to remember, but because they focused on making HAART part of their daily
routine Participant 008 spoke of a morning routine that she tried to follow This routine consists
of wake up, eat breakfast and take her pills in the same order every day Participant 005 spoke of
how she consistently reminded herself that taking HAART was just like washing her face or
getting dressed - something she did every day Participant 004 stated that her routine was not
one solely of her own design, but also of her nurse who would drive by her place every morning
on his way to work to remind her to take her pills She stated that, "I knew he cared for me and
that's what helped me care for myself" The building and maintaining of a regular routine was a
common struggle of the participants in this study, each with a differing degree of success
Factors which may be contributing to the difficulties in establishing a legular routine include the
chaotic life that many of the participants were living A chaotic life which can include unstable
housing, associated morbidities of addiction, other health issues, mtergenerational affects of
colonization, residential schools and the resulting margmahzation, mtergenerational trauma,
violence, tood insecurities, inability to find meaningful work, and societal exile that Abongmal
people of Canada live with today - to name a few
The participants in this study who weie the most successful at lemembenng to take
HAART have successfully incorporated the act of taking their pills into eveiyday life routines
The success the research participants found m using routines is supported by the academic
literature However, the literature also points to the limitations of relying excessively on routine
Watt et al (2009) found people on HAART who anchored the time of taking their pills with
other legular activities - such as meal oi tea times, blushing their teeth, piayer, or radio and
television piograms - were more successful in achieving the high levels of adheience requiied foi
maximum vital suppression On the contraiy, the limitation of lelying on loutmes was discussed

63
by Golin and colleagues (2002) who reported on a study that participants found it hard to
integrate HAART into their daily routines. They found that more than two thirds of the
participants reported that their most basic daily activities could act as a barrier to taking HAART
and those participants had to balance their needs of sleep, eating, working, and social activities
against the possible side effects of HAART, the storage requirements of HAART, and the food
requirements of HAART (Golin et al., 2002). Furthermore, approximately one quarter of the
participants stated that when their routine changed even minimally, it was much harder to
remember to take HAART (Golin et al., 2002). A study by Beusterien, Davis, Flood, Howard
and Jordan (2008) asked 35 people on HAART what factors were involved in adherence. One of
the main themes to emerge was the lifestyle fit of HAART. In other words, how well HAART fit
into a person's life was just as important as how well a person could adapt their lifestyle to fit the
"inflexibility" of HAART. To clarify, Vervoort, Grypdonck, de Grauwe, Hoepelman, and
Borleffs (2009) found that when HIV was accepted into a person's self-identity, that the taking
of HAART could become a routine, and that the more a person accepted HIV and internalized
HAART as part of his life, the more automatic adherence became.
The concept of the "inflexibility" of HAART was mentioned by several participants who
expressed feelings of being "burdened" by the knowledge of being forever bonded to HAART,
in that to be healthy, one must be adherent, but to be adherent, one must place HAART as a top
priority in life. Therefore, in order for HAART to be successful, it must, by necessity, outrank
several quality of life activities, such as traveling, visiting friends, and making random spur-ofthe-moment decisions. At times however, HAART is known to have many potential side effects
ranging from nausea to life threatening conditions that can greatly affect a person's desire to
continue taking HAART. The impact of these side effects on adherence to HAART has mixed

64
reviews. Watt and colleagues (2009) found that the side effects noticed - predominately
gastrointestinal - were considered minimal to participants' overall health gains and did not
influence adherence. Furthermore, in the study done in India, the idea of side effects having the
potential to influence adherence was not identified by any of the research participants
(Kumarasamy et al., 2005). However, a study done in South Africa found that feeling healthy
from taking HAART was not always a strong enough incentive to override the negative side
effects of HAART (Dahab, 2008). Dahab (2008) found that positive health gains promoted
adherence, but that experiencing side effects was a barrier strong enough to cause
discontinuation of HAART.
In this study, despite the severity of the side effects reported by the research participants,
none of the participants reported that the side effects of HAART were a contributing factor in
missing doses of HAART. Participant 001 reported that the central nervous system side effects
that she dealt with were "violent" dreams that were full of "blood, guts and killings", and that the
dreams were so vivid that at times she woke up at night crying. Participant 009 felt he "almost
died" from the side effects when he first started HAART - referring to nausea, vomiting,
diarrhoea, photo-sensitivity, blackouts and achy joints that persisted for the first several months
of starting HAART. Participant 008 spoke of the frustrations caused by HAART side effects, but
made no mention of considering stopping HAART. The sentiment of the participants perspective
on why they persevered was punctuated by Participant 006 and Participant 009 when they said,
"I'd rather take my pills and be nauseous and live than not take it," and,
I just kept telling myself that okay, you know what, I'm doing this for the right
reason. I'm urn, doing this because it's going to prolong my life. I'm, you know what,
okay so I'm hurtin' right now, but you know what, I'm going to live longer...

65
Support from AIDS service organizations, family andfriends. The next most common
support identified by the participants is the support they received from AIDS service
organizations (ASO), family and friends. Examples of support were plentiful and included but
were not limited to the provision of a steady relationship, food hamper programs, gentle
reminders to take HAART, rides to the pharmacy, and most importantly, the knowledge that
someone cared for them. These examples were very similar to what Watt et al. (2009) found to
be effective social assistance strategies to encourage adherence to HAART which included:
explicit reminders to take HAART, receiving material support which included money and food,
and emotional support. Alfonso and colleagues (2006) found that participants with high levels of
adherence appreciated when family and friends assisted with decision making and provided help
with daily living. More specifically, Alfonso and colleagues (2006) found that family and friends
provided a sense of structure and normalcy to daily routines and that the participants expressed
that having someone to talk to, who accepted and appreciated them for who they were, were
critical to adherence success.
The Aboriginal literature reported similar findings with that of the research participants in
terms of the benefits of support from ASO, family and friends. Mill, Keenan, Lambert, Larking
and Ward (2006) conducted 31 interviews with Aboriginal people living with HIV in Alberta,
Canada to discuss their experiences living with HIV. They found that strong support systems
were needed following diagnosis, and that support services needed to be ongoing to ensure that
people in different stages of acceptance of their HIV diagnosis could access services when ready
(Mill et al., 2006). Participants described the support they received from family and friends as a
source of finding purpose in life, and of getting the courage to live 'strongly' with HIV (Mill et
al., 2006). Jackson and Reimer (2005) found that 157 (80.5%) of interviewees used AIDS service

66
organizations. Furthermore, Jackson and Reimer found that 147 (74%) of interviewees stated that
they had had positive experiences with AIDS service organizations. Reasons for attending
ASO's included the ability to share their stories, to get information about HIV, to receive
emotional support, and to receive support from peers (Jackson & Reimer, 2005). On the flip side,
Jackson and Reimer also reported that 49 (25%) of interviewees reported concerns about ASO's.
These concerns included confidentially and privacy issues, logistic barriers, and lack of
knowledge of existing ASO's (2005).
Barriers to taking HAART. When asked to identify, "What makes it hard for you to take
HAART?" the two main themes that emerged were being high and the physical location of the
HAART medication.
Being high. When asked, "How does being high affect your ability to take your HIV
medications (adherence)?" the most common answer given by six of the respondents was that
being high made it harder for them to take their antiretroviral medications. Only two participants
identified that being high did not affect their ability to take HAART. The three main reasons that
summarized how being high affected the participants' ability to take their HAART were:
changes in priorities, forgetfulness, and losing track of time when using injection drugs.
Participant 008 stated that when using illicit drugs heavily, the drugs became the most important
thing in her life - more important than family, than HAART, than food and water. Participant
005 stated that when using heavily, her morning priority was to secure her drugs for the day, and
that she focused her attention on 'hustling' and whatever 'scam' she needed to do to get money
to buy drugs, and that it was only after she had her drugs that she was willing take her ARVs - if
she could remember. Two of the clients spoke of "forgetting" to take HAART, even though they

67
were on methadone as well. Participant 001 stated that when she gets high on cocaine33, she will
stay high for days without sleep, and that when she does go to sleep she will sleep for two to
three days and then wake up "dope-sick"34. She will then need to get more drugs, which will
result in her missing her doctor's appointment, and she will not go to the pharmacy for her
methadone or HAART. Participant 006, stated that being high will make her forget to take her
medications, or not remember if she took them, and that she would eventually get to the
pharmacy for her methadone, but maybe not on the same day. Participant 008, who is very proud
of her ability to take her pills, remarked that being high will sometimes cause her to forget if she
took them or not, and that the forgetfulness will cause her to break routine. Two participants
spoke of how time just "slips by" when they are using drugs. Participant 004, stated "...time
passes that you don't realize has even gone by when you're, when you're on whatever." This
sentiment was echoed by Participant 009, who stated,
I take [HAART]..., but usually I'm either late or like....way, way, late but I'll still
take them. And then I'm kicking myself going oh, damn, you know what, I missed
my time.... And then there's times when I just forget altogether even though I've
been thinking about it for a few hours.
Participant 006 summed up the sentiment of participants feelings on the subject of forgetfulness
when she stated, "Being on a run and forgetting to take them. I can remember to do a fix but I
can't remember to take my meds, you know?"
There is a complete lack of literature examining Aboriginal specific reasons for how
being high can act as a barrier to taking HAART. What can be said, and is drawn from the
Cocaine is a powerfully addictive stimulant ding Cocaine can be snorted 01 dissolved in water and then injected Cocaine
constricts blood vessels, dilates pupils, and increases body temperature, lieait late, and blood pressuie It can also cause
headaches and gastiointcstinal complications such as abdominal pain and nausea http //drugabuse go\/infotacts/cocaine html
Dope sick lefeis to a peison who is physically and mentally sick because they aie coming ott ot heroin
http //www urbandictionaiy com/define php''term_dope%20sick

68
existing literature, is that "forgetfulness" is a critical and valid reason that explained why people
do not take HAART 100 percent of the time. In 2004, Kerr and colleagues interviewed 108
people who inject drugs in Vancouver. They hoped to discover reasons why people who inject
drugs are less likely to take HAART as effectively as people who do not inject drugs. The study
found that seventy-one (66%) of the 108 participants were less than 95% adherent, and the
number one reason for missing HAART was forgetting (Kerr et al, 2004). In Jamaica, Harvey,
Carrington, Duncan, Figueroa, Hirschorn, et al. (2008) studied HAART adherence factors in 116
adults and found that 43 (37%) of the participants cited that forgetfulness was one of the main
reasons for not taking HAART. Furthermore, a study by Tucker, Orlando, Burnam, Sherbourne,
Kung and Gifford (2004) examined data of 1,889 patients on HAART from the HIV Cost and
Services Utilization Study, and found that the difficulties associated with remembering to take
HAART was one of the major factors that contributed to non-adherence for drug users.
The reasoning of why participants forget to take HAART can be attributed to actual drug
highs, but additional deliberation must be considered when examining the characteristics of this
study's research participants. Participants in this study were highly marginalized and often had
competing priorities for their attention, such as obtaining shelter, food security, personal security,
and security of belongings. These factors - when combined with the quest to obtain injectable
drugs to get high - often meant that achieving high rates of adherence to HAART was nearly
impossible.
The two participants who responded that injection drug use does not affect their HIV
treatment believed that they have been able to separate their lives as injection drug users and that
of people living with HIV. Participant 003 summed up this perspective when she explained that
she understood that illicit drugs would always be available, but that her HIV medication had the

69
potential to develop resistance and not work anymore, so she needed to make it a priority in her
life. However, the existing literature, as discussed earlier in this paper, would suggest that these
participants have been more able to fully integrate HIV into their personal identities and
therefore are better able to internalize and comprehend the importance of making HAART a
priority in their lives, over that of injection drug use.
Physical location of HAART. The physical location of HAART, as a barrier to strong
adherence, was mentioned by four participants. Three of the five participants who were on
methadone expressed difficulties in having HAART attached to the daily witnessed methadone
program. Participant 001 described the issues of the methadone daily witness program

when

she stated, "It gets stressful having to go in every single day to the pharmacy." Other participants
noted the barrier to having their HAART at local pharmacies was the restrictions put on by
pharmacies for medication pick-up -i.e. limited hours of business - that made it difficult to get
their methadone and HAART. One client, who at the time of interview was homeless, spoke of
having to keep her HAART in her bag and how that created difficulties because she has no safe
place to store her medications.
A study by Stein and colleagues examined HAART adherence rates for methadone
patients on HAART. The study found that methadone patients who continued to use injection
drugs were significantly more likely to be non-adherent than non-injecting methadone patients
(2000). Moreover, a vast amount of literature can be found to support the argument that being on
methadone acts to increase overall adherence rates to HAART. A study by Uhlmann, Milloy,
35
Daily witnessed methadone ingestion is when a patient who is prescribed methadone must attend a pharmacy everyday to
receive their dose of methadone The pharmacist must assess the patient prior to providing methadone to the patient After the
patient drinks the methadone, a short convcisation is required to cnsuie that the methadone has been swallowed Confirmation
that the methadone is swallowed is necessary as some patients may try to keep the methadone in their mouth until they can spit it
into a container in older to sell http //www bcpharmacists oig/libraiy/H-Rcsourccs/H-4_PhaimacyJResources/5059MethadoneJVlaintenanceGuidepdf

70
Kerr, Zhang, Guillemi, Marsh, et al. (2010) found that methadone maintenance therapy
contributed to faster initiation and ensuing adherence to HAART among people who were living
with HIV and who were engaged in opiate-based injection drug use. Raffa, Grebely, Tossonian,
Wong, Viljoen, and colleagues (2007) looked at 60 patients enrolled in a community supported
pharmacy methadone program who were also receiving daily witnessed HAART. Of the 60
patients, only 4 (6.7%) abstained from illicit drug use for the duration of the study and the study
adherence rate was 84.5%. Conway, Prasad, Reynolds, Farley, Jones, et al. (2004) conducted a
study that evaluated the use of directly observed therapy (DOT) for the management of HAART
for patients in a methadone program. The study enrolled 54 patients, of which, 48 (89%)
continued to actively use injection drugs throughout the study period. The study results indicated
that 34 (65%) of participants achieved HIV viral suppression at the two year follow-up. The
study showed that DOT can be successful for even the most difficult to treat - a category that
people who use injection drugs fit into (Conway et al., 2004).
In terms of Aboriginal people, there is a scarcity of evidence in Canada examining the
effectiveness of methadone maintenance therapy for Aboriginal people who are opiate-dependent
and living with HIV. Oviedo, Guh, Marsh, Brissette, Nosyk, and colleagues (2010) examined the
characteristics and responses to treatment among 192 (60 Aboriginal) people receiving heroinassisted treatment in the North American Opiate Maintenance Initiative (NAOMI study). The
HIV rates at baseline showed that 23.3% of the Aboriginal participants had HIV, compared to
8.3% in the non-Aboriginal group. Participants were divided into two groups; one received
injectable hydromorphone or diacetylmorphine, and the other received oral methadone. The
results showed that at 12 months, the retention rates were 84.4% in the injectable
hydromorphone/diacetylmorphine group and 57.1% in the oral methadone group (Oviedo et al.,

71
2010). The authors concluded that offering medically prescribed diacetylmorphine or
hydromorphone to Aboriginal people with long-term opiate dependence could be an effective
means of attracting and retaining this target group in addiction treatment, and thus reduce the risk
of HIV infection, and facilitate the provision of antiretroviral treatment for those already infected
(Oviedo et al., 2010).
With respect to the concerns expressed by the participants about the perceived stress and
added difficulty of attending daily witnessed methadone programs. Along with the supportive
literature that details the benefits of daily witnessed treatment. The participants in this study that
were engaged in a methadone program, on average, had a greater suppressed viral load than
participants who were not on methadone maintenance therapy. This indicator was strongly
suggestive of higher average HAART adherence rates. That said, although the evidence in the
literature and the viral load levels of the participants suggested that HAART given in association
with methadone maintenance therapy was more successful in promoting adherence, respect must
be given to the enormous amount of energy and time that it takes for the participants to visit a
pharmacy daily for medication dispensing. This leads to the idea of medication burnout

and the

conscious decision to stop taking HAART as health is regained and more "normal" lives are
established that begin to conflict with the commitment needed for high adherence, as referred to
by Ware et al. (2006).
Making supports for HIV treatment work better. When asked what improvements could be made
to existing HAART adherence support, the most common answer given was that healthcare
providers need to be more caring in the treatment of Aboriginal people living with HIV.

Pill fatigue refers to a condition that may occur ovci time in chronically ill patients who have to take a lot ot medication, in
which the patient stops taking pills because of the stiess and monotony of constant pill swallowing
http //www urbandictionary com/define php?tcim-pill%20fatigue

72
More caring. The resounding answer, when asked how HIV treatment could work better
for participants, was that healthcare providers need to be more caring. When probed to elaborate
on the definition of "more caring" the participants' responses revealed two main themes. Firstly,
that healthcare providers need to be more patient-centered. For example, health care providers
need to see that the person sitting in front of them is a "human being", who happens to be
Aboriginal, who lives with HIV and who uses injection drugs. Secondly, healthcare providers
also need to be more consistent in terms of day-to-day interactions and confidentiality. The need
for healthcare providers to recognize the person, and not simply the diagnosis, was succinctly
described by Participant 008, when she stated,
It doesn't matter what he is, a dealer, user, it doesn't matter what he is, he's a human
being. You should take away everything except the fact that he's a human being.
And leave everything else to go. And that's just the way it should be.
She further elaborated that healthcare providers need to "drop the stereotypes" that are often
associated with people who use drugs and not worry so much about the drugs they are doing,
how much money they have or other negative undertones, and focus on the reason that the
healthcare visit is taking place. The idea of treating the human being and not the addict was
further discussed by Participant 005, who commented on the strength of her health care provider
and his ability to see the human being behind her often chaotic presentation,
He showed true concern for me. I'm a human being and a person. Not as being
Aboriginal or being white, or anything else, just as being, a person and helping save
me and how strong I became because of the love that was shown.
Another participant expressed that a provider who showed interest in the client's family and life
issues outside of HIV and drug use was a perfect example of a caring provider. Moreover, many

73
participants remarked that the more a provider showed that they actually cared about them, the
more likely the participants were to care about themselves, and the more likely they were to start
taking their HIV medications.
The idea of greater consistency and awareness of confidentially was also expressed as a
way of showing a more caring approach. Consistency in the relationship was seen as a caring act,
and to paraphrase the participants' perspective: consistency is not reflective of someone who is
only doing the job to collect a pay-cheque. Furthermore, many of the participants remarked that
healthcare providers should not assume that clients are open about their HIV status and that even
in healthcare settings such as hospitals and clinics, healthcare providers should ask permission to
talk about a patient's health condition -i.e. HIV - to other healthcare professionals, students, and
family. Another participant pointed out that questions asked by health care providers need to be
asked in a positive manner, and more as a question rather than a directive, because being
authoritative is not a good way to earn patient trust and facilitate cooperation in health care plans.
The views expressed by the research participants were shared in the existing literature.
Many examples of the effectiveness of a more client centered-approach could be found. A study
by Beach, Keruly and Moore (2006) involving 1,743 people living with HIV, examined whether
patient-provider relationships were associated with better adherence and health outcomes for
patients with HIV. The study found that patients who reported that their healthcare providers
knew them as individuals had higher adherence rates to HAART than those who felt distant from
their healthcare providers. Likewise, Roberts (2002) interviewed 28 people living with HIV
regarding the physician-patient relationship and its connection to HAART adherence. The results
showed that good quality physician-patient relationships tended to promote adherence while
lesser quality relationships impeded it. A study looking at the adherence rates of 137 African-

74
Americans who used crack-cocaine found that when a patient believed his healthcare provider
practiced with a patient-centered approach, it infused hope and optimism in the patient, and
ultimately increased adherence rates (Atkinson, Schhonnesson, Williams, & Timpson, 2008). A
study by Stall and colleagues (1996) on the decision to accept and start HAART by gay and
bisexual men identified that the way the message was conveyed by healthcare professionals
about the importance of engaging in HAART was crucial to achieving high adherence rates.
Additionally, Ungvarski found that certain characteristics and personality attributes of the
healthcare provider were important in HAART therapy (1998). Finally, a study involving 47
HIV positive gay men found that healthcare providers who were sensitive to their patients needs
were more likely to encourage care seeking behaviours inclusive of better adherence to HAART
(Schneider, Kaplan, Greenfield, Li & Wilson, 2004).
In terms of Aboriginal specific literature, it is important for the healthcare provider to be
conscious of the fact that one of the major consequences of colonization was the mistrust by
Aboriginal people towards governments and health organizations, and that this mistrust resulted
in many Aboriginal people not using these services for diagnosis and treatment (Jackson &
Reimer, 2005; Williams & Guilmette, 2001). For this reason, it is important for healthcare
providers to approach HIV care from a culturally sensitive position that works on building a
relationship. CAAN (2008) found that using a "relational care" approach enabled healthcare
providers to build the needed relationships to effect positive change in the health status of
Aboriginal people living with HIV. Relational care begins with the core elements of trust,
rapport, respect for individuality, consideration for Aboriginal and holistic approaches to wellbeing, flexibility and openness toward alternative, complementary and integrated care strategies
(CAAN, 2008). Furthermore, a willingness by healthcare providers to surrender expert status

75
earned by their education and by gaining knowledge of how better to meet the needs of
Aboriginal people living with HIV works towards minimizing further harm (CAAN, 2008).
Relational care encompasses the physical, social, emotional, spiritual dimensions of human
connection (CAAN, 2008). A physical connection can be established through creating a warm
and Aboriginal friendly environment, and can be seen through kindness expressed in the body
language used by healthcare providers (CAAN, 2008). Social connections are made by
acknowledging humans place in the physical world and by showing respect for the power and
privilege healthcare providers have. Social connections can be further nurtured by
acknowledging the place we - humans -occupy in the world and the power and privilege that
comes from our race, gender, language and sexuality. Social connection is furthered strengthened
when we work towards a common goal of wellness for Aboriginal people (CAAN, 2008).
Listening, sharing and sense of family make up the emotional connection of relational care
(CAAN, 2008). Finally, spiritual connection embraced notions of acceptance, open-mindedness
and human competence. It celebrates the diversity of Aboriginal people living with HIV in terms
of cultural background, personal experience and sexual orientation (CAAN, 2008). The core
elements of relational care include trust; rapport; respect for individuality; regard for Aboriginal
and holistic approaches to well-being; flexibility and openness toward alternative,
complementary, and integrated care strategies; and willingness by healthcare providers to
surrender expert status earned by their education to learn about how to better meet the needs of
Aboriginal people living with HIV (CAAN, 2008).
Aboriginal Traditions.
One of the puiposes of this research was to ascertain the role that Aboriginal traditions
have in the lives of each participant, and how this role is used to influence HAART adherence.

76
The most common answer given by the research participants when asked about Aboriginal
traditions was that they do not know anything about Aboriginal traditions, and therefore,
Aboriginal traditions were not part of their lives. Furthermore, when asked if the participants felt
a desire to "reconnect" to Aboriginal traditions, only three of the participants responded
positively and continued to talk on the subject of Aboriginal traditions, while the other
participants responded with answers that moved away from the topic of Aboriginal traditions.
Reconnection to Aboriginal traditions. When asked to tell the story of Aboriginal traditions in
their lives, three of the participants responded that they considered Aboriginal traditions an
important component of health in their lives, but that their knowledge of Aboriginal traditions
was poor. Evidence of the lack of traditional knowledge can be drawn from comments made by
each participant. Participant 009 openly stated that he knew very little of his past, to the point of
calling himself a "White Indian". He spoke about wanting to learn about smudging, traditional
sweats, and medicines. Participant 008 commented that she wanted to be like her mom someday
- a woman who actively practiced traditional ways of life. However, she implied her lack of
knowledge by saying that she would need to start spending more time learning from her mother
because she had a "long way to go," as her addiction still held her in a strong grip.
Encouragingly, she also recognized a change in her life-focus as she stated, "My focus used to be
who's got the best drugs, you know, but now my focus is where can we go to this, this and this
and where is the best moose hunting. I guess it's a personal choice." Participant 006 spoke of the
recognition of storytelling, and how she hoped to one day help people get healthy by sharing her
life story of being an Aboriginal woman living with HIV and using injection drugs.
The superficiality of the sentiments expressed by Participants 009, 008 and 006 in terms
of their self proclaimed naivete of Aboriginal traditions, coupled with the absence of responses

77
from the other participants, may suggest that a disconnect from traditional culture and identity
exists within the participants. It could be hypothesized that due to this disconnect, a further
divide of not expressing interest to reconnect was made by the other research participants. It
could also be put forward that this absence of expressed interest was driven by a lack of
knowledge of how Aboriginal traditions could help in creating one's identity and achieving
increased health status.
The academic literature clearly articulates that the residual effects that colonization has
had on the Aboriginal people of Canada - such as residential schools, intergenerational trauma,
marginalization, violence, addiction, absolute poverty, and racism - have all had a dramatic
psychological impact on the well-being of each and every Aboriginal person in Canada (Taylor
& Usborne, 2010). Moreover, it cannot be refuted that the lasting effects of colonization has
fundamentality changed the traditional culture and identity of Aboriginal people, and therefore
impacted the cultural identity of each individual (Taylor & Usborne, 2010). In terms of
Aboriginal people living with HIV, CAAN (2008), found that approximately half of Aboriginal
people living with HIV who were interviewed shared a sense of disconnection from their
Aboriginal culture. Reasons for this disconnection may include: being fostered or adopted into
non-Aboriginal families; living through residential schools; traumatic experiences of stigma,
homophobia, ostracism, and abusive relationships due to being HIV positive; and lack of support
services in home communities, resulting in the need to move to receive HIV care. Evidence of
"disconnection" from Aboriginal culture and a shift in "identity" is reflected by Participant 008,
I think that because of, and I know that people hear this a lot, but nowadays the way
we were raised, who we are, I was raised to be a drug dealer. I was raised around,
like I remember watching people shoot up when I was 10 or 11 years old. I was

78
raised in this environment and every Aboriginal family I know, every person I talk to
was also raised in this environment, around alcohol, drugs and violence. So how do
you fix something that has been ingrained in you since you were a baby? So that's
what they need to figure out, is how can we reprogram an entire race of people. It's
pretty much. And I've been thinking about it and I sit at home and think about it and
I don't know. The only thing that works for me is like I said my mom. Like she's an
old traditional woman, she was raised in the bush and I have enough respect for her
that I will stay clean over the summer and bring her berry picking and do all these
things she needs to do because I have that respect for her but 90% of us haven't got
that respect anymore. We've lost it.
A review of the existing literature of self perception tells us that identity informs people of
who they are, to whom and where they belong, of which practices define them, of what their
individual puiposes and roles are in life, and of how each person is distinctive from others
(Kirmayer, Brass & Tait, 2000). Furthermore, Kirmayer and colleagues found that identity is
continually reinforced through key practices and social institutions (2000). Ashmore, Deaux, and
McLaughlin-Volpe (2004) found that groups to which people belong to, influence identity, in
that, culture, religion, social-class, economic-status, gender, profession, and recreational groups
all may contribute to an individual's identity.
In terms of Aboriginal people, Karlsen and Nazroo (2002) found that strong connections to
cultural and ethnic identity among Aboriginal people could at times override the negative
stereotypes of poverty and discrimination - two conditions which many Aboriginal people live
with. Furthermore, Karlsen and Nazroo found that the symbols and relationships attached to
understanding ethnic identification could be powerful in promoting better health (2002).

79
Additionally, Walters and Simoni (2002) found evidence supporting that the more individuals
learn about and connect with their traditional culture, the stronger their coping abilities in dealing
with negative encounters and events - like living with HIV. Finally, CAAN (2008) found that
participants believed that by reconnecting with their culture, they were able to seek new meaning
in life, learn to take pride in being Aboriginal, and to generally improve their self-esteem. In
terms of this study, it is important to acknowledge that Participant 009 identified Aboriginal
culture to that of being a drug dealer, when she inferred that the culture she was raised in raised
her to be a drug dealer. Therefore although this participant self-identified a strong connection to
her Aboriginal culture - albeit her interpretation of Aboriginal culture meant or included to be a
drug dealer - attention must be given to what "is" Aboriginal culture. So not only does a
reconnection to culture need to be facilitated, but for some, "Aboriginal culture" must also be
redefined. When asked how a reconnection to Aboriginal culture could be facilitated, a number
of answers emerged from the group. Participant 005 spoke about the importance of stable
housing and how having a home needs to be formally identified as a priority for Aboriginal
people living with HIV. Participant 009 spoke of his new dedication to visiting with an Elder and
the wisdom and knowledge that could be gained. Participant 006 spoke of the need for peercounseling because she found it much easier to connect with other Aboriginal people living with
HIV because of the innate connection she felt with people of Aboriginal descent who shared the
burden of living with HIV and addiction issues. Participant 008 spoke in rich detail of how the
reconnection to Aboriginal culture -for HIV positive IDUs - should be facilitated. She also
spoke of how to motivate a reconnection for Aboriginal people who show little interest in
Aboriginal ways-of-life. She spoke of the need to create a belief in Aboriginal people that they
are just as important as everybody else, which would result in a greater sense of self-worth. This

80
in turn, would create greater opportunities for self-help and healthy living practices. Participant
004 commented that how she grew to embrace HAART was reflective of this approach, as she
stated that the main reason she became adherent to HAART was because she realized her nurse
truly cared for her, and his "caring" resulted in her "caring" for herself and the decision to take
HAART.
The literature tells us that all the ideas of how to reconnect to culture offered by
participants are valid and supported. Cisneros (2007) completed a literature review on the
relationship between housing and HIV status. He found that having a stable place to live
influenced the length and quality of life itself. Turton (1997) described the ways of knowing
about health from an Ojibwe perspective. She reported that Elder teachings were highly
respected because knowledge in Aboriginal communities was not passed through books or
videos, but rather oral tradition. Harris and Larsen (2006) interviewed 12 people living with HIV
who had experience with peer counseling. The study found that peer counseling provided
benefits to both parties. These benefits included seeing what is possible in life while living with
HIV, and finding a greater sense of meaning and purpose in life. Marino, Simoni, and Silverstein
(2007) conducted interviews with nine HIV positive-peer counsellors to examine if the peers
themselves benefited from being peers. The study found that the peers identified three main areas
that they benefited in. Firstly, they reported a reduction in the sense of isolation experienced or
related to in living with HIV. Secondly, the peers reported a sense of being counselled
themselves, which was viewed as beneficial. Thirdly, the peers reported a sense of empowerment
and confidence when dealing with their healthcare providers. Mill, Keenan, Lambert, Larkin and
Ward (2008) interviewed 31 Aboriginal people living with HIV and found that strong
community supports was key in living successfully with I1IV. Richmond, Ross and Egeland

81
(2007) examined the importance of social support in promoting health in Aboriginal Canadians.
The study grouped social supports into four broad categories: positive interactions, which
referred to spending time with others; emotional support, which referred to guidance and
feedback; tangible support, which referred to actions, including getting rides to appointments;
and affection and intimacy, which referred to caring, love and empathy. The study found that
having social support was a strong determinant of health (Richmond et al., 2007).
Conclusion
This chapter examined three broad topics using Grounded Theory: living with HIV and
injection drug use; HIV treatment; and HIV, IDU, and being Aboriginal. Many points expressed
by the research participants mirrored what could be found in the existing literature.
The points that differed or were experienced differently by the participants in this study
in terms of HAART enablers, as compared to existing literature, included trust in healthcare
providers, and the establishment of daily routines to facilitate HAART adherence. Trust in
healthcare providers was inherently much more difficult to achieve for Aboriginal people due
the lingering effects of colonization. Daily routines were important, but the additional difficulties
of addiction, homelessness, intergenerational affects of colonization, marginalization,
intergenerational trauma, violence, food insecurities, the inability to find meaningful work, and
societal exile that Aboriginal people of Canada live with today, greatly inhibited the ability of the
participants to establish long-term routines.
The points that differed or were experienced differently by the participants in this study
in terms of barriers to HAART adherence, as compared to existing literature, were identified in
the being high discussion. The existing literature supports the statement that being high promotes
a greater level of forgetfulness in people, resulting in missed HAART. The differences identified

82
by this study were that not only did the participants face the concept of 'forgetfulness,' but that
the participants were highly marginalized and had competing priorities including obtaining
shelter, food, and personal security- all of which contributed to 'forgetfulness' of taking
HAART.
Other points that differed or were experienced differently by the participants in this study
in terms of how adherence supports could be improved, as compared to existing literature, were
minimal, but were identified in the more caring section. It was found that due to the effects of
colonization, an inherent mistrust of healthcare services exists within Aboriginal communities,
and that culturally specific actions must be undertaken to create an environment that
demonstrates more caring and consistency. This action could be undertaken by using a
'relational care' approach, as detailed earlier.
Finally, the disconnection to Aboriginal culture, and its effects on adherence and
participation in healthcare was discussed. No major difference was found among the study group
and the existing literature. However, this section did further explore a gaping hole in the
provision of healthcare, namely the lack of a relational care approach by healthcare providers. It
also provided great insight into potential actions that could be taken to foster a greater level of
healthcare uptake among Aboriginal people living with HIV and injection dmg use. As it can be
argued that in general the participants are living more for "survival" and that the basics of food,
shelter, and access to health care are more pertinent to their day to day lives then fostering a
reconnection to Aboriginal culture. Moreover, consideration was given to the idea that many of
the participants lacked a clear understanding of what constitutes Aboriginal culture. Therefore
not only does the healthcare provider have a duty to provide "relational care" but also a duty to
foster a more accurate understanding of Aboriginal culture.

83

Chapter Six: Summary, Conclusions, and Implications
Summary of the Research Study
Adherence to Highly Active Antiretroviral Treatment is very demanding and requires
high compliance rates - over 95% - to achieve maximal HIV viral suppression, resulting in
optimal health gains. The purpose of this study was to elicit an understanding of how Aboriginal
people on HAART, who currently use illicit injection drugs, achieve the necessary high
adherence rates required of HAART in hopes of modifying the adherence support they receive
from their healthcare providers. This study examined interview data from nine Aboriginal people
living with HIV in Prince George, British Columbia, who are on HAART, and who use illicit
injection drugs. A Grounded Theory methodology, as described by Creswell (2008), was used.
Data interpretation was guided by Strauss and Corbin's (1998) three phase analysis strategy.
Findings from this study revealed that building trust, and establishing daily routines among the
research participants differs from what is found in the current academic literature. Secondly, this
study found that while forgetfulness was a common theme for not taking HAART, the
participants in this study had many competing priorities in addition to forgetting while being
high, as compared to other populations discussed in the academic literature. Thirdly, in terms of
what the participants wanted from adherence programs, it was found that the greatest expressed
need was that healthcare providers be more caring and consistent in their approaches to
healthcare. Finally, this project found evidence to support the concept that disconnection from
Aboriginal culture, while a major theme among the participants, was not a main barrier to
HAART adherence

84
Conclusion
In this study, nine Aboriginal people told their stories of the struggles they experienced
living with HIV and injection drug use, while still experiencing the intergenerational effects of
colonization. Each participant opened his or her heart and soul and expressed to the best of their
abilities what they felt was needed to help assist them through their journey. It is hoped that the
lessons learned from this research can influence the care practices of healthcare providers who
support Aboriginal people living with HIV.
The key points identified in this study include the greater need for a more caring and
consistent approach from care providers. That is, we must strip away our bias of what we see in
front of us, and truly recognize that people living with HIV, addiction issues, mental health
issues, legal issues, etc.. .are human beings first and foremost - possessing all the same feelings
and rights that we have. We must continue to recognize that the lingering effects of colonization
are still prevalent in Aboriginal societies and continue to pose great barriers to each and every
Aboriginal person - especially those who are highly marginalized. Finally, we must advocate for
greater connection to Aboriginal culture for those who wish to reconnect to a traditional way of
life by not only encouraging that reconnection, but by actually fostering it to happen. The use of
"relational care" teachings and the learning of "culturally safe" modalities can help bridge this
void and help facilitate a greater understanding of the relationships and workings of traditional
practices and Western healthcare.
Recommendations
Three major recommendations can be made of the findings from this study. One:
promote reconnection to Aboriginal culture. Two: healthcare providers need to adapt a more
holistic view of healthcare practices. Three: when designing healthcare related interventions for

85
Aboriginal people living with HIV, attention must be paid to the basic necessities of life personal safety, food, shelter, family, self-esteem, and love.
Promoting the reconnection to Aboriginal culture. Testimony by the research participants and
evidence from existing academic literature provides support for the theory that the more a person
learns about, and connects with his traditional culture, the stronger his ability to deal with
negative health situations (Walters & Simoni, 2002). However, it is vital to remember that before
a reconnection to Aboriginal culture can be facilitated, a redefining of what Aboriginal culture
"is" may need to be done. Reconnection to culture can be facilitated by providing traditional
services alongside Western medicine. This means that Western-trained healthcare providers need
to work side-by-side with traditional healers and Elders, and health-clinics and programs for
Aboriginal people need to be staffed by Aboriginal people. Additionally, non-Aboriginal staff
members need to embrace traditional practices and learn how to incorporate tradition into their
practices.
Holistic view of healthcare practices. According to traditional beliefs, all four elements of life
are vital to health - physical, emotional, mental, and spiritual (McLeod, 2004). The four
elements of life are elaborately entwined, and interact to support a strong and healthy person. If
one of the elements is either neglected or given too much attention, wellness or balance suffers in
all four areas, thus healing in one element can impact healing in another element (McLeod,
2004). However, Western medicine does not typically take into account this connection and
tends to focus on each element individually. The ideas expressed in this project by the research
participants are that healthcare providers need to be more caring, and recognize the individual
and not just the disease. For this reason, it is imperative that healthcare providers recognize the
value of a more holistic approach. A relational care approach that is recommended by the

86
Canadian Aboriginal AIDS Network (CAAN; 2008) is a starting point that can help in building
the necessary trusting relationships and allegiances between Aboriginal people and healthcare
providers. Relational care involves two main themes: connecting and relationships. Connecting
refers to the perception that a safe environment exists where Aboriginal people feel cared for as a
person, not as a disease (CAAN, 2008). Relationships are conceptualized as the way healthcare
providers interact with Aboriginal people, how they negotiate care, and how that care is
individualized (CAAN, 2008).
Designing healthcare related interventions. Evidence provided by the research participants,
which is supported in the academic literature, necessitates that program design pay close
attention to cultural learning modalities, and that when crafting health related programs
partnerships are built between Aboriginal and non-Aboriginal partners. When designing HIV
related health programs for Aboriginal people, it is vitally important to understand Aboriginal
world views and the fundamental differences between how Aboriginal and non-Aboriginal
people perceive the effects of HIV. By offering a mixture of traditional health and wellness
programs, combined with conventional healthcare services, it can ensure that Aboriginal people
are more likely to participate in and sustain recommended care practices. Allies
Final thoughts
The results of this research project have had a profound effect on the writer's professional
practice as a HIV nurse clinician. I have learnt how to slow down in my practice, to hear my
client's stories and appreciate each client as an individual. I've realized that to be a nurse
delivering high quality HIV care, I do not always need to speak to my clients about what it is like
living with HIV or the issues they are having with HAART. The more I listen, the fewer

87

questions I need to ask, as answers to my thoughts tend to find their way to me through the
stories I hear my clients tell.

88
References
Avert. (2009). HIV & AIDS Treatment and Care. Retrieved on August 25, 2009 from
http://www.avert.org/hiv.htm
Absolon, K., & Willett, C. (2005). Putting ourselves forward: Location in aboriginal research. In
L. Brown & S. Strega (Eds.), Research and resistance (pp. 97-126). Toronto: Scholar's
Press.
Arnsten, J., Demas, P., Grant, R., Gourevitch, M., Farzadegan, H., Howard A., & Schoenbaum,
E. (2002). Impact of active drug use on antiretroviral therapy adherence and viral
suppression in HIV-infected drug users. Journal of General Internal Medicine : JGIM,
77(5), 377-381.
Ashmore, R., Deaux, K., & & McLaughlin-Volpe, T. (2004). An organizing framework for
collective identity: Articulation and significance of multidimensionality. Psychological
Bulletin, 130(1), 80-114.
Atkinson, J. S., Schonnesson, L. N., Williams, M. L., & Timpson, S. C. (2008). Associations
among correlates of schedule adherence to antiretroviral therapy (ART): A path analysis of a
sample of crack cocaine using sexually active African-Americans with HIV infection. AIDS
Care, 20(2), 253-262.
Baum, ML, Rafie, C , Lai, S., Sales, S., Page, B., & Campa, A. (2009). Crack-cocaine use
accelerates HIV disease progression in a cohort of HIV-positive drug users. Journal of
Acquired Immune Deficiency Syndromes (1999), 50(1), 93-99.
Beach, M., Keruly, J. & Moore R. (2006). Is the quality of the patient-provider relationship
associated with better adherence and health outcomes for patients with HIV? Journal of
General Internal Medicine: JGIM, 21(6), 661-665.

89
Beusterien, K., Davis, E., Flood, R., Howard K. & Jordan, J. (2008). HIV patient insight on
adhering to medication: A qualitative analysis. AIDS Care, 20(2), 244-259.
Boulos, D., Yan, P., Schanzer, D., Remis, R., & Archibald, C. (2006). Estimates of HIV
prevalence and incidence in Canada, 2005. Can Communicable Disease Report, 32(15),
165-74.
British Columbia Centre for Disease Control (2007). HIV/AIDS annual Report 2007.
Retrieved on June 3, 2009 from http://www.bccdc.org/downloads/pdf/std

/reports/HIV-

AIDS%20Update%20Report_2007.pdf
British Columbia Stats. (2006). BC Stats: Aboriginal Profiles. Retrieved on August 23,
2009 from http://www.bcstats.gov.bc.ca/data/cen01/abor/ap_main.asp
British Columbia Statistics. (2009). Community Facts. Retrieved on January 9, 2010 from
http://www.bcstats.gov.bc.ca/data/dd/facsheet/cfl63.pdf
Canadian AIDS Treatment Information Exchange (2006). A Practical Guide to HAART.
Retrieved on August 25, 2009 from http://www.catie.ca/PG_HAART_e.nsf/
Canadian AIDS Treatment Information Exchange (2009). HIV in Canada: Trends and Issues
For Advancing Prevention, Care, Treatment and Support Through Knowledge Exchange.
Retrieved on January 4, 2010 from http://www.catie.ca/pdf/Canada/HIV-inCanada_ES.pdf
Carrieri, M., Leport, C , Protopopescu, C , Cassuto, J., Bouvet, E., & Peyramond, D. (2006).
Factors associated with nonadherence to highly active antiretroviral therapy - A 5-year
follow-up analysis with correction for the bias induced by missing data in the treatment
maintenance phase. J AIDS-Journal of Acquired Immune Deficiency Syndromes, 41(A), All485.

90
Celentano, D., Vlahov, D., Cohn, S., Shadle, V , Obasanjo, O , & Moore, R. (1998). Selfreported antiretroviral therapy in injection drug users. JAMA-Journal of the American
Medical Association, 280(6), 544-546.
Chenitz, C , & Swanson, J. (1985). From Practice to Grounded Theory. Addison-Wesley
Publishing Company. Health Sciences Division, Menlo Park, California
Cisneros, H. H. (2007). Policy perspective on housing and HIV/AIDS. AIDS and Behavior,
7/(s2;Suppl. S), 7-S8.
Cofrancesco, J., Scherzer, R., Tien, P., Gibert, C , Southwell, H., & Sidney, S. (2008). Illicit drug
use and HIV treatment outcomes in a US cohort. AIDS, 22(3), 357-365.
College of Physicians and Surgeons of British Columbia. (2011). Find a family Physician.
Retrieved on February 10, 2011 from (https://www.cpsbc.caj.
College of Registered Nurses of Nova Scotia (2006). Position Statement Promoting
Culturally Competent Care. Retrieved on November 15, 2008 from
http://www.crnns.ca/documents/PositionStatementCultural06.pdf
Conway, B., Prasad, J., Reynolds, R., Farley, J., Jones, M., Jutha, S., Smith, N., Mead, A. &
DeVlaming, S. (2004). Directly observed therapy for the management of HIV-infected
patients in a methadone program. Clinical Infectious Diseases, 38(Supp\. 5), S402-S408.
Creswell, J. (1998). Qualitative Inquiry and Research Design Among Five Traditions.
Thousands Oaks, CA: Sage Publications
Creswell, J. (2008). Educational Research: Planning, Conducting, and Evaluating
Quantitative and Qualitative Research. Pearson Education., New Jersey.

91
Dahab, M. M. (2008). "That is why I stopped the ART": Patients' & providers' perspectives on
barriers to and enablers of HIV treatment adherence in a South African workplace program.
BMC Public Health, 5(1), 63; 63.
de Bmyn, T. (1998). HIV/AIDS and discrimination: A discussion paper. Montreal: Canadian
HIV/AIDS Legal Network.
Flowers, P., Davis, M., Hart, G., Rosengarten, M., Frankis, J., Imrie, J. (2006). Diagnosis and
stigma and identity amongst HIV positive black Africans living in the UK. Psychology &
Health, 2/(1), 109-122.
Frideres, J. (1994). Health Promotion and Indian communities: Social Support or Social
Disorganization' in B. Bolaria and R. Bolaria (Eds) Racial minorities' medicine
Health, Halifax: Fernwood Publishing, pp.269-296
Garcia, P., & Cote, J. (2003). Factors Affecting Adherence to Antiretroviral Therapy in
People Living with HIV/AIDS. Journal of the Association of Nurses in AIDS Care.
Retrieved on August 23, 2009 from http://www.sciencedirect.com/science/journal/
Gibson, N., Cave, A,. Doering, D., Ortiz, L., & Harms P. (2005). Socio-cultural factors
influencing prevention and treatment of tuberculosis in immigrant and aboriginal
communities in Canada. Social Science & Medicine (1982), 61(5), 931-942.
Glaser, B. (2002). Conceptualization: On Theory and Theorizing Using Grounded Theory.
International Journal of Qualitative Methods 1(2). Retrieved on September 3, 2009
fromhttp://www.openj-gate.org/Browse/Articlelist.aspx?Journal_ID=104454
Godwin, O. (2011). Executive Director of the Division of Family Practice. Personal interview.

92
Golin, C , Isasi, F., Bontempi, J. & Eng, E. (2002). Secret pills: HIV-positive patients'
experiences taking antiretroviral therapy in North Carolina. AIDS Education and
Prevention, , 14(4) 318-329.
Gordillo, V., del Amo, J., Soriano, V., & Gonzalez-Lahoz, J. (1999). Sociodemographic and
psychological variables influencing adherence to antiretroviral therapy. AIDS, 13(13), 17631769.
Gray, J. (2006). Becoming adherent: Experiences of persons living with HIV/AIDS. JANACJournal of the Association of Nurses in AIDS Care, 17(3), 47-54.
Hamill, S., & Dickey, M. (2005). Cultural Competence: What is needed in working with Native
Americans with HIV/AIDS. Journal of the Association of Nurses in AIDS care. 16(4) 6469.
Harris, G., & & Larsen, D. (2007). HIV peer counseling and the development of hope:
Perspectives from peer counsellors and peer counseling recipients. AIDS Patient Care and
STDs, 2/(11), 843-859.
Harvey, K., Carrington, D., Duncan, .1., Figueroa, J., Hirschorn, L., Manning, D. & Jackson, S.
(2008). Evaluation of adherence to highly active antiretroviral therapy in adults in Jamaica.
West Indian Medical Journal, 57(3), 293-297.
Havercamp. B. (2005). Ethical Perspectives on qualitative Research in Applied
Psychology. Journal of Applied Psychology. Retrieved on March 20, 2009 from
http://yk4bk9bt5r.search.serialssolutions.com/?V=1.0&N=100&L=YK4B9BT5R&
S=AC_T_B&C=journal+of+counseling+psychology
Health Canada. (2006). First Nations, Inuit and Aboriginal Health: HIV and AIDS.

93
Retrieved on June 4, 2009 from http://www.hc-sc.gc.ca/fniah-spnia/diseases-maladies/aidssida/index-eng.php
Hinkin, C , Barclay, T., Castellon, S., Levine, A., Durvasula, R., & Marion, S. (2007). Drug use
and medication adherence among HIV-1 infected individuals. AIDS and Behavior, 11(2),
185-194
Johnson, M., Neilands, B., Dilworth, S., Morin, S., Remien, R., & Chesney, M. (2007). The role
of self-efficacy in HIV treatment adherence: Validation of the HIV treatment adherence
self-efficacy scale (HIV-ASES). Journal of Behavioural Medicine, 30(5), 359-370.
Karlsen, S., & & Nazroo, J. (2002). Agency and structure: The impact of ethnic identity and
racism on the health of ethnic minority people. Sociology of Health & Illness, 24(1), 1-20.
Kerr, T., Marshall, A., Walsh, J., Palepu, A., Tyndall, M., & Montaner, J. (2005). Determinants
of HAART discontinuation among injection drug users. AIDS Care-Psychological and
Socio-Medical Aspects of AIDS/HIV, 17(5), 539-549.
Kerr, T., Palepu, A., Barnes, G., Walsh, J., Hogg, R., & Montaner, J. (2004). Psychosocial
determinants of adherence to highly active antiretroviral therapy among injection drug users
in Vancouver. Antiviral Therapy, 9(3), 407-414.
Kirmayer, L., Brass, G., & & Tait, C. (2000). The mental health of aboriginal peoples:
Transformations of identity and community. Canadian Journal of Psychiatry, 45(1), 607616.
Krusi, A., Wood, E., Montaner, J., & Kerr, T. (2010). Social and structural determinants of
HAART access and adherence among injection drug users. International Journal of Drug
Policy, 21(1), 4-9.

94
Kumarasamy, N. (2005). Barriers and facilitators to antiretroviral medication adherence among
patients with HIV in Chennai, India: A qualitative study. AIDS Patient Care and STDs,
19(8), 526-537.
Leeman, J. (2010). Implementation of antiretroviral therapy adherence interventions: A realist
synthesis of evidence. Journal of Advanced Nursing, 66(9), 1915-1930.
Lert, F., & Kazatchkine, M. (2007). Antiretroviral HIV treatment and care for injecting drug
users: An evidence-based overview. The International Journal of Drug Policy, 18(4), 255261.
Lerat, G., (2005) Traditional Healing Practices and Services: Needs of Aboriginal People living
with HIV/AIDS. Canadian Aboriginal AIDS Network. Ottawa, Ontario. Lert, F., &
Kazatchkine, M. (2007). Antiretroviral HIV treatment and care for injecting drug users: An
evidence-based overview. International Journal of Drug Policy, 18(4), 255-261.
Lima, V., Harrigan, R., Murray, M., Moore, D., Wood, E., & Hogg, R. (2008). Differential
impact of adherence on long-term treatment response among naive HIV-infected individuals.
AIDS, 22(17), 2371-2380.
Lima, V., Kretz, P., Palepu, A., Bonner, S., Kerr, T., & Moore, D. (2006). Aboriginal status is a
prognostic factor for mortality among antiretroviral naive HIV-positive individuals first
initiating HAART. AIDS Research Therapy, 3, 14.
Lincoln, YS. & Guba, EG. (1985). Naturalistic Inquiry. Newbury Park, CA: Sage Publications.
Lloyd-Smith, E., Brodkin, E., Wood, E., Kerr, T., Tyndall, M., Montaner, J. & Hogg, R. (2006).
Impact of HAART and injection drug use on life expectancy of two HIV-positive cohorts in
British Columbia. AIDS (London), 20(3), 445-450.

95
Lopez, K. A. K. (2004). Descriptive versus interpretive phenomenology: Their contributions to
nursing knowledge. Qualitative Health Research, 14(5), 726-735.
Lucas, G. (2001). Detrimental effects of continued illicit drug use on the treatment of HIV-1
infection. Journal of Acquired Immune Deficiency Syndromes (1988), 27(3), 251-259.
Lucas, G. Gebo, K., Chaisson, R., & Moore, R. (2002). Longitudinal assessment of the effects of
drug and alcohol abuse on HIV-1 treatment outcomes in an urban clinic. AIDS (London),
16(5), 767-774.
Lucas, G. Griswold, M., Gebo, K., Keruly, J., Chaisson, R. & Moore, R. (2006). Illicit drug use
and HIV-1 disease progression: A longitudinal study in the era of highly active antiretroviral
therapy. American Journal of Epidemiology, 163(5), 412-420.
Macaulay, A. (2009). Improving aboriginal health how can health care professionals contribute?
Canadian Family Physician, 55(4), 334-336.
Mallinson, R., Rajabiun, S., & Coleman, S. (2007). The provider role in client engagement in
HIV care. AIDS Patient Care and STDs, 21, S77-S84.
Malterud, K. (2001). Qualitative research: Standards, challenges, and guidelines. The Lancet
(British Edition), 353(9280), 483-488.
Marino, P., Simoni, J., & & Silverstein, L. (2007). Peer support to promote medication
adherence among people living with HIV/AIDS. Social Work in Health Care, 45(\), 67-80.
Marelich, W., Johnston-Roberts, K., Murphy, A., & & Callari, T. (2002). HIV/AIDS patient
involvement in antiretroviral treatment decisions. AIDS Care, 14(1), 17-26.
Marshall, B., Ken-, T., Livingstone, C , Li, K., Montaner, J., & Wood, E. (2008). High
prevalence of HIV infection among homeless and street-involved aboriginal youth in a
Canadian setting. Harm Reduction Journal, 5(1), 35.

96
McCall, J., Browne, A., & Reimer-Kirkham, S. (2009). Struggling to survive: The difficult
reality of aboriginal women living with HIV/AIDS. Qualitative Health Research, 79(12),
1769-1782
McDonnell, M. (2006). Factors associated with adherence to antiretro viral therapy. The Journal
of the Association of Nurses in AIDS Care, 17(2), 4-15.
McLeod, A. (2004). As the Wheel Turns: The HIV/AIDS Medicine Wheel: The Positive Side.

Metzger, D. S., & Zhang, Y. (2010). Drug treatment as HIV prevention: Expanding treatment
options. Current HIV/AIDS Reports, 7(4), 220-225.
Mientjes, G., Vanameijden, E., Vandenhoek, A. & Coutinho R. (1992). Increasing Morbidity
Without Rise in Non-AIDS Mortality Among HIV-infected Intravenous -Drug Users in
Amsterdam. AIDS (London), 6(2), 207-212.
Mill, J., Jackson, R., Worthington, C , Archibald, C , Wong, T., & Myers, T. (2008). HIV testing
and care in Canadian Aboriginal youth: A community based mixed methods study. BMC
Infectious Diseases, 5(1), 132.
Miller, C , Spittal, P., Wood, E., Chan, K., Schechter, M., & Montaner, J. (2006). Inadequacies
in antiretroviral therapy use among aboriginal and other Canadian populations. AIDS CarePsychological and Socio-Medical Aspects of AIDS/HIV, 18(8), 968-976.
Moatti, J., Carrieri, M., Spire, B., Gastaut, J., Cassuto, J., & Moreau, J. (2000). Adherence to
HAART in French HIV-infected injecting drug users: The contribution of buprenorphine
drug maintenance treatment. AIDS (London), 14(2), 151-155.
Morse, J. M., & Field, P. A. (1995). Qualitative research methods for health professionals
(2n Ed.). Thousand Oaks: Sage Publications.
National Aboriginal Health Organization. (2008). Cultural competency and safety:

97
A guide for health care administrators, providers and educator. Retrieved on November, 15,
2008 from http://www.naho.ca/publications/culturalCompetency.pdf
Newbold, K. (1998). Problems in search of solutions: Health and Canadian Aboriginals.
Journal of Community Health, 23(1), 59-73.
Neuman, W. (1994). Social Research Methods: Qualitative and Quantitative Approaches.
Allyn and Bacon, Toronto Canada.
Newman, C , Bonar, M., Greville, H., Thompson, S., Ressarab, D., & Kippax, S. (2007). Barriers
and incentives to HIV treatment uptake among aboriginal people in Western Australia.
AIDS, 21, S13-S17.
Northern Health (2008). Meeting the Challenge: A Blood Borne Disease Update for
Northern Communities. Northern Health Public Health. Prince George BC.
Office of the Provincial Health Officer. (2007). Pathways to Health and Healing. 2 nd
Report on the Health and Well-being of Aboriginal People in British Columbia.
Victoria, British Columbia. Ministry of Healthy Living and Sport.
Olsen, J., Richardson, J., Dolan, P., & Menzel, P. (2003). The moral relevance of personal
characteristics in setting health care priorities. Social Science & Medicine, 57(7), 1163-1172.
Oviedo-Joekes, E., Guh, D., Marsh, D., Brissette, S., Nosyk, B., Krausz, M., et al. (2010).
Characteristics and response to treatment among aboriginal people receiving heroin-assisted
treatment. Canadian Journal of Public Health, 101(3), 210-212.
Palepu, A., Tyndall, M., Yip, B., O'Shaughnessy, M., Hogg, R., & Montaner, J. (2003). Impaired
virologic response to highly active antiretroviral therapy associated with ongoing injection
drug use. JAIDS-Journal of Acquired Immune Deficiency Syndromes, 32(5), 522-526.

98
Palepu, A., Yip, B., Miller, C , Strathdee, S., O'Shaughnessy, M., & Montaner, J. (2001). Factors
associated with the response to antiretroviral therapy among HIV-infected patients with and
without a history of injection drug use. AIDS, 75(3), 423-424.
Papps, E., & Ramsden, I. (1996). Cultural Safety in Nursing: The New Zealand Experience.
International Journal for Quality in Healthcare, 8(5), 491-497
Peretti-Watel, P., Spire, B., Lert, F., Obadia, Y., & VESPA, G. (2006). Drug use patterns and
adherence to treatment among HIV-positive patients: Evidence from a large sample of
French outpatients (ANRS-EN12-VESPA 2003). Drug and Alcohol Dependence, 82, S71S79.
Public Health Agency of Canada. (2007). HIV/AIDS among Aboriginal persons in
Canada: A continuing concern. HIV/AIDS EPI Update. Centre for Infectious
Public Health Agency of Canada. (2009). HIV and AIDS in Canada 2009. Public Health
Agency of Canada.
Disease Prevention and Control, Public Health Agency of Canada. Public Health Agency of
Canada. HIV/AIDS Epi Updates, (2007b). Surveillance and Risk Assessment Division,
Centre for Infectious Disease Prevention and Control, Public Health Agency of Canada,
2007.
Raffa, J., Grebely, J., Tossonian, II., Wong, T., Viljoen, M., Khara, M., Mead, A., McLean, M.,
Duncan, F., Petkau, A., DeVlaming, S. & Conway B. (2007). The impact of ongoing illicit
drug use on methadone adherence in illicit drug users receiving treatment for HIV in a
directly observed therapy program. Drug and Alcohol Dependence, 59(2-3), 306-309.

99
Richmond, C , Ross, N., & & Egeland, G. (2007). Social support and thriving health: A new
approach to understanding the health of indigenous Canadians. American Journal of Public
Health (1971), 97(10), 1827-1833.
Roberts, K. (2002). Physician-patient relationships, patient satisfaction, and antiretroviral
medication adherence among HIV-infected adults attending a public health clinic. AIDS
Patient Care andSTDs, 16(1), 43-50.
Room, R. (2005). Stigma, social inequality and alcohol and drug use. Drug and Alcohol Review,
24(2), 143-155.
Russell, J., Krantz, S., & Neville, S. (2004). The patient-provider relationship and adherence to
highly active antiretroviral therapy. JANAC-Journal of the Association of Nurses in AIDS
care, 15(5), 40-47.
Schneider, J., Kaplan, S., Greenfield, S., Li, W., & & Wilson, I. (2004). Better physician-patient
relationships are associated with higher reported adherence to antiretroviral therapy in
patients with I11V infection. Journal of General Internal Medicine: JGIM, 19(11), 1096U34.
Selwyn, P., Alcabes, P., Hartel, D., Buno, D., Schoenbaum, E., Klein, R., Davenny, K. &
Friedland, G. (1992). Clinical manifestations and predictors of disease progression in drugusers with Human-Immunodeficiency-Virus infection. The New England Journal of
Medicine, 327(24), 1697-1703.
Sinclair, R. (2003). Indigenous Research in Social Work: The challenge of
operationalizing worldview. Native Social Work Journal 5, (November 2003),
117-139.

Small, W., Wood, E., Betteridge, G., Montaner, J., & Kerr, T. (2009). The impact of
incarceration upon adherence to HIV treatment among HIV-positive injection drug users: A
qualitative study. AIDS Care-Psychological and Socio-Medical Aspects of AIDS/HIV, 21(6),
708-714.
Sorensen, J., Haug, N., Delucchi, K., Gruber, V., Kletter, E., Batki, S., et al. (2007). Voucher
reinforcement improves medication adherence in HIV-positive methadone patients: A
randomized trial. Drug and Alcohol Dependence, 88(1), 54-63.
Spire, B., Lucas, G., & Carrieri, M. (2007). Adherence to HIV treatment among IDUs and the
role of opioid substitution treatment (OST). International Journal of Drug Policy, 18(4),
262-270.
Stall, R., Hoff, C , Coates, T., Paul, J., Phillips, K, Ekstrand, ML, et al. (1996). Decisions to get
HIV tested and to accept antiretroviral therapies among gay/bisexual men: Implications for
secondary prevention efforts. Journal of Acquired Immune Deficiency Syndromes and
Human Retrovirology, 11(2), 151-160.
Statistics Canada. (2006). 2006 Census: Aboriginal Peoples in Canada in 2006: limit
Statistics Canada. 2007. Prince George, British Columbia. (2006) Community Profiles.
2006 Census. Statistics Canada Catalogue no. 92-591-XWE. Ottawa.
Metis and First Nation. Retrieved on June 7, 2009 from
http://www.12.statcan.ca/census-recensement/2006/as-sa/97-558/index-eng.cfm?
Stein, M., Rich, J., Maksad, J., Chen, M., Hu, P., & Sobota, M. (2000). Adherence to
antiretroviral therapy among HIV-infected methadone patients: Effect of ongoing illicit drug
use. American Journal of Drug and Alcohol Abuse, 26(2), 195-205.

101
Strathdee, S., Palepu, A., Cornelisse, P., Yip, B., O'Shaughnessy, M., & Montaner, J. (1998).
Barriers to use of free antiretroviral therapy in injection drug users. JAMA-Journal of the
American Medical Association, 280(6), 547-549.
Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and
procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.
Taylor, D., & & Usborne, E. (2010). When I know who "we" are, 1 can be "me": The primary
role of cultural identity clarity for psychological well-being. Transcultural Psychiatry, 47(1),
93-111.
Thorpe, L., Frederick, M., Pitt, J., Cheng, I., Watts, D., Buschur, S., Green, K., Zorrilla, C ,
Landesman, S. & Hershow, R. (2004). Effect of hard-drug use on CD4 cell percentage, HIV
RNA level, and progression to AIDS-defining class C events among HIV-infected women.
Journal of Acquired Immune Deficiency Syndromes (1999), 37(3), 1423-1430.
Tucker, J., Orlando, M., Burnam, M., Sherbourne, C , Kung, F. & Gifford, A. (2004).
Psychosocial mediators of antiretroviral nonadherence in HIV-positive adults with
substance use and mental health problems. Health Psychology, 23(4), 363-370.
Turton, C. (1997). Ways of knowing about health: An aboriginal perspective. Advances in
Nursing Science, 19(3), 28-36.
Tyndall, M. Craib, K., Currie, S., Li, O'Shaughnessy, & Schechter, M. (2001). Impact of HIV
infection on mortality in a cohort of injection drug users. Journal ofAcquired Immune
Deficiency Syndromes (1988), 28(4), 351-357.
Uhlmann, S., Milloy, M., Kerr, T., Zhang, R., Guillemi, S., Marsh, D., Hogg, R., Montaner, M.
& Wood, E. (2010). Methadone maintenance therapy promotes initiation of antiretroviral
therapy among injection drug users. Addiction (Abingdon, England), 105(5), 907-913.

102
Ungvarski, P. (1998). Improving patient compliance with HIV treatment regimens. JAMA : The
Journal of the American Medical Association, 280(20), 1745-1745.
Vervoort, S., Grypdonck, M., de Grauwe, A., Hoepelman, A. & Borleffs, J. (2009). Adherence to
HAART: Processes explaining adherence behavior in acceptors and non-acceptors. AIDS
Care, 27(4), 431-438.
Ware, N., Wyatt, M., & Tugenberg, T. (2005). Adherence, stereotyping and unequal HIV
treatment for active users of illegal drugs. Social Science & Medicine, 61(3), 565-576.
Ware, N., Wyatt, M , & Tugenberg, T. (2006). Social relationships, stigma and adherence to
antiretroviral therapy for HIV/AIDS. AIDS Care-Psychological and Socio-Medical Aspects
of AIDS/HIV, 18(8), 904-910.
Walters, K., & & Simoni, J. (2002). Reconceptualizing native women's health: An "indigenist"
stress-coping model. American Journal of Public Health (1971), 92(4), 520-524.
Watt, M., Maman, S., Earp, J., Eng, E., Setel, P., Golin, C. & Jacobson, M. (2009). "It's all the
time in my mind": Facilitators of adherence to antiretroviral therapy in a Tanzanian setting.
Social Science & Medicine (1982), 68(10), 1793-1800.
Weiss, J. (1999). Adherence to HAART: Impressions from the 12th world AIDS conference,
Geneva, June 28-July 3, 1998. Patient Education Counseling, 36(3), 287-9.
Wolfe, D. (2007). Paradoxes in antiretroviral treatment for injecting drug users: Access,
adherence and structural barriers in Asia and the former Soviet Union. International Journal
of Drug Policy, 18(4), 246-254.
Wood, E., Kerr, T., Palepu, A., Zhang, R., Strathdee, S., & Tyndall, M. (2006). Slower uptake of
HIV antiretroviral therapy among aboriginal injection drug users. Journal of Infection, 52(4),
233-236.

103
Wood, E., Kerr, T., Tyndall, M., & Montaner, J. (2008b). A review of barriers and facilitators of
HIV treatment among injection drug users. AIDS, 22(11), 1247-1256.
Wood, E., Montaner, J., Li, K., Zhang, R., Barney, L., & Strathdee, S. (2008). Burden of HIV
infection among aboriginal injection drug users in Vancouver, British Columbia. American
Journal of Public Health, 98(3), 515-519.
Wood, E., Montaner, J., Tyndall, M., Schechter, M., O'Shaughnessy, M., & Hogg, R. (2003).
Prevalence and correlates of untreated human immunodeficiency virus type 1 infection
among persons who have died in the era of modern antiretroviral therapy. JOURNAL OF
INFECTIOUS DISEASES, 188(8), 1164-1170.
Wood, E., Montaner, J., Yip, B., Tyndall, M., Schechter, M., & O'Shaughnessy, M. (2003).
Adherence and plasma HIV RNA responses to highly active antiretroviral therapy among
HIV-1 infected injection drug users. Canadian Medical Association Journal, 169(1), 656661.
World Health Organization (2007). AIDS epidemic update. Retrieved on November 7, 2008
from http://data.unaids.org/pub/EPlSlides/2007/2007_epiupdate_en.pdf

Appendix A

Interview Questions

1. Please tell me your story of living with injection drug use?
2. Please tell me your story of living with HIV (and injection drug use)?
3.

Please tell me your story of HIV treatment?

4.

Please tell me your story of being Aboriginal, HIV positive and an injection drug
user?

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Appendix B Code book
1.0000

Injection Drug Use
1.1000
1.1100
1.1200
1.1300
1.1400
1.2000
1.2100
1.2200
1.3000
1.4000
1.4100
1.4200
1.4300
1.4400
1.4500
1.4600
1.4700
1.5000
1.5100
1.5200
1.5300
1.5400
1.5500
1.5600
1.5700
1.5800
1.6000

2.0000
2.1000
2.1100
2.1110
2.1120
2.1130
2.1140
2.1200
2.1210
2.1220
2.1230
2.1300
2.1310
2.1320

Introduction to Injection Drug Use
-Peers
-Choices
-Environments (community)
-Trusted relationship
Role IDUPlays in Life
-Socio-economic status
-Family
Health outcomes of IDU
Triggers
-People
-Change in my emotional state
-Money in my pocket
-Offer of free drugs
-Media with addiction themes (movies, TV,
etc..)
-Geography (being near drugs)
-Lack of support
How I stay clean (free of drugs)
-Proper support structures
-The right people
-Knowledge of HIV disease process
-Marijuana
-Distraction (reading, exercise)
-Being by myself
-Aboriginal traditions
-Fear of overdose
Survival
HIV
Living with HIV (andIDU)
-What it is like to have HIV
Fear
Anger
Always on my mind
Not on my mind everyday
-Initial feelings of having HIV
End of my life
Fear
Anger
-Coping strategies I use to live with HIV
Talking to friends / sharing my story
Reflection

106
2.1330
2.1340
2.1350
2.1360
2.1370
2.1380
2.1381
2.1390
2.1400
2.1500
2.1600
2.2000
2.2100
2.2200
2.2300
3.0000
3.1000
3.1001
3.1002
3.1003
3.1004
3.1005
3.1006
3.1007
3.1008
3.1009
3.1010
3.1011
3.1012
3.1013
3.2000
3.2001
3.2002
3.2003
3.2004
3.2005
3.2006
3.2007
3.2008
3.2009
3.3000
3.4000
3.4100
3.5000

Compartmentalizing
Using drugs and other risky behaviours
Living one day at a time
Community supports
Incorporating HIV into self perception
Taking care of myself
-Being aware of others
Recognizing potential triggers
-My place in the community living with HIV
-How HIV affects my health
-Self reflection of my HIV
ASO Workers /people and professionals
-People who show empathy and concern
-Follow through on empathy
-Prejudice and stigma
HIV Treatment (ARVs)
- What helps me remember to take my meds
Fewer pills
Fewer side effects
Trust in Nurses and Doctors
Physical location of ARVs (methadone)
Fear (understanding consequences)
Fewer times a day
Having a routine I follow everyday
Positive changes in CD4 and PVL
Staff at ASO's / supports / family
Being clean
Having a home
Increased ARV knowledge
Being open and honest in the community
- What makes it harder for me to take my AR Vs
Side effects (drug interactions, comorbidities)
Physical location of my ARVs
Distractions
Timing of when to take my ARVs
Being High (active addiction)
Homelessness
Life stress
People (addicts)
The burden of taking pills everyday
-ARVside effects
-The importance of treating my HIV
Always on my mind
-How can HIV treatment work belter for me

107
3.5100
3.5200
3.5300

Communication
More HIV and ARV education
The decision to start treatment should be
mine

3.5400
3.5500
3.5600
3.5700
4.0000
4.1000
4.1100
4.1200
4.1300
4.1400
4.2000
4.2100
4.2200
4.3000
4.3100
4.3200
4.3300
4.3400
5.0000
5.1000
5.2000
5.4000
5.5000
6.0000

I

Care providers should be more caring
More connection with other PLWA
Outreach programs
Incorporation of Aboriginal Tradition
The connection between HIV and IDU
-How does HIV affect my drug use
HIV increases my drug use
HIV does not increase my drug use
I do not share needles
I get sick, because my CD4 is low
-How does IDU affect my HIV treatment
IDU makes it harder to take my pills
IDU does not make it harder to take my pills
-How does IDU affect me living with HIV
IDU makes my forget I have HIV
IDU takes away the responsibility of having
HIV
IDU takes away negative feelings and
emotions
IDU is making me sicker (HIV worse)
Aboriginal traditions in my life
-Knowledge of Aboriginal traditions
-Perception of self-identity (as an Aboriginal)
-Reconnection to traditional Aboriginal
practices
-Respect and perception for/of Aboriginal
traditions (my Aboriginal self)
HIV, IDU & being Aboriginal

108