The Depth of Water Requires Knowledge:
Listening to the Voices of the HIV Patient Journey
One story
“My journey began in October of 1984. This doctor I used to go and see took a blood test. We
used to call him the “vampire” because he always took blood from everyone. He went and got
me tested without telling me. And then he said “make an appointment, come back” so I went
back, kept my appointment. He told me, “I have some good news and some bad news.” I asked,
“What’s the good news?” He said, “There is no good news really, I just said that to cheer you up.
The bad news is: you’re HIV positive; you have five years left to live.” Right away he knew how
long I was going to live and that was 28 years ago when he said that and I’m still here.“
(KI 12-12-12-05)
Our participants did not want health care providers who work hard, and with heart and
compassion, to feel discouraged by this report. Ironically, it is the fact that our participants are
noticing signs of change and improvement as seeds of hope that encouraged them to speak
so openly, trusting that these agents of change within the health care system would be able
to act for more improvements if they heard the full story and range of experiences from them,
unadorned with anything but honesty. It is to those pioneers building culturally excellent
services that they would like to dedicate this report, with their gratitude.
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
1
2
the northern way of caring
Table of contents
4.
Acknowledgments
5.
Art acknowledgments
6.
Contributors
7.
Executive summary
8.
Guiding principles
9.
Introduction
9. Activities
10. Background
14. Methods
14. Outreach and recruitment
17. The River
19. Findings
19. General observations
21. Outcomes
23. Barriers to excellent
service
27. Recommendations
27. Best practice principles
32. Conclusion
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
3
Acknowledgements
There are many people who contributed to this Patient Journey Mapping (PJM) report, but we would like
to particularly acknowledge several people whose devotion and tireless efforts made this report possible.
First and foremost, we want to acknowledge and thank our experts. This PJM report would not have been
possible without the assistance of our participants: Allan Mousseau, Christina Tom, Gaylene Collison, TW,
MR, CA, CW, SD, RL, CF, K L, BK, ML, MR, FM, CT, LS, JS, MW.
Special thanks also goes to:
• Darren Lauscher, whose expertise, lived experience and informative dialogue kept us grounded
ensuring all socio-economic sectors were considered — nothing about us, without us;
• Patricia Howard, who was the lead researcher and instrumental in seeing this project through to its
conclusion;
• Kathy MacDonald, who has been instrumental in leading the Northern Health team throughout its
Seek and Treat for Optimal Prevention — STOP HIV/AIDS Pilot Project;
• Bareilly Sweet, Regional Coordinator of the Blood Borne Pathogens Services, who recognized the
importance of listening to the patient’s voice, and ensuring it was done in a culturally appropriate
manner;
• Dr. Theresa Healy, who graciously shared her expertise and knowledge and helped support the
evolution of the PJM report from the beginning to the end;
• Dr. Tina Fraser, who was willing to engage with the participants and incorporate cultural safety both
inside the focus groups and within the document itself;
• Margaret Coyle, who believed in the process of the PJM and provided the safe space at Central
Interior Native Health Society to conduct the individual interviews and focus groups;
• Sam Milligan, whose dedication to client care assisted with the participant recruitment;
• Linda Keefe, whose unwavering passion for improving the patient experience helped recruit the
participants;
• Agnes Snow, who supported this PJM report coming to fruition with an Aboriginal lens within
Aboriginal Health;
• Clayton Gauthier, whose artistic talents and vision gave the beauty to this PJM report;
• Dylon McLemore, who provided several of the amazing Aboriginal art pieces to the PJM report; and
• Jayson, who turned the river journey into the beautiful PJM report front and back cover.
4
the northern way of caring
Art acknowledgements
The principal researcher contacted a prominent Cree/Carrier artist, Clayton Gauthier, and asked him
if he would be willing and able to take on the task of producing drawings for the report. He thought
about it and decided that, as much as he wanted to, he would not be able to do all the drawings we
required. However, Clayton had another idea. Since he teaches traditional art at one of the local high
schools in Prince George, he thought a few of the students would be interested in contributing to this
worthy cause. He was right. He arranged for a few of
students to meet with the principal researcher where
she explained what the report was about and how it
would potentially look when completed. The youth
were excited that their art was going to be sold and
published while they were still in high school.
The river from the focus groups was explained to
them and they were asked to draw certain themes
from the river to be included in the report. They
were asked to interpret the data and encouraged
to use their creativity in the finished product. For
one youth in particular, this was his first attempt at
traditional Aboriginal art. The amazing work needs
no explanation. The powerful stories told throughout
are evident. The learning about HIV was gentle and
holistic. This incidental learning approach is far more
effective when dealing with sensitive subjects. And the
information has gone deep into all the youths’ spirits.
It was determined by the project leads to provide the
youth involved with a copy of the finished report so they can always remember their involvement. They
can also share their achievement with family and friends as the learning about HIV continues to ripple
outwards through their art. The involvement of the youth not only represented a cultural component, but
grounded the report in strong cultural values. While the opportunity for education through this art initiative
cannot be understated, the researchers/participants are so thankful and indebted to the contribution from
these young Aboriginal artists.
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
5
Contributors
6
Patricia Howard, MA
Bareilly Sweet, MEd Candidate
Principal Researcher
Collaborating Research Support
Dr. Theresa Healy, PhD
Dr. Tina Fraser, PhD
Collaborating Research Support
Collaborating Research Support
the northern way of caring
Executive summary
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient
Journey report attempts to document the greatest areas of need and obstacles currently
facing the HIV-positive population in Prince George, BC. It is our hope, that this process
and report will be useful as a model/template in other regions and with other chronic
diseases. This report is detailed enough to allow others to easily adapt it for their
purposes.
The Patient Journey Mapping (PJM) is a well-established resource for health service
planning and delivery which brings health care providers together with patients to
review the patients’ experiences and recommend areas or procedures for improvement.
(Impact Health Improvement Action Society of British Columbia — ImpactBC). Not
only do the results of a PJM improve the health care experience and quality of care for
individual patients and clients served, it also provides efficiencies and cost savings for
the system as a whole. It also provides support to the multidisciplinary health care team
through practices and information that make collaboration possible and effective.
In an attempt to access the positive outcomes of the PJM exercise, and address the
barriers to participation in the PJM process that present in the Aboriginal community, the
STOP HIV/AIDS project team conducted a patient journey mapping with a difference.
The journey encouraged storytelling around a traditional circle. The storytelling circle
also included a way to capture the key elements, ideas and experiences in a visual
metaphor that was meaningful and important to the participants. This culturallygrounded model was also an important innovation because the topic under discussion
was sensitive and experiences associated with it were often painful.
The report presented here describes the process and how this visually-based PJM
emerged and functioned; lists the results gathered by the mapping process; documents
the analysis and insight that emerged; and concludes with a set of recommendations.
We could not have arrived at this destination without the honesty and trust of the
participants. Our heartfelt gratitude goes out to all the participants for their shared
stories. We admire their willingness to transform their lived experience into guidance for
the rest of us.
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
7
Guiding principles
We adopted several important principles to guide us in this work. The first principle, non-deficit
reporting, refers to presenting results with positive language and appreciation for the work and efforts
of those consulted. The second principle, taking an appreciative stance, means that any emerging
recommendations or suggestions will support a positive agenda for moving forward. Relationshipbuilding is the third important principle. Relationships between organizations and communities, between
agencies and funders, can be fragile. Non-deficit reporting and the appreciative stance means that
relationships between the various bodies involved in the work are enhanced and not harmed.
There are many advantages to implementing these three principles. Any understanding or
recommendations emerging from this work are more likely to be accepted and enacted when the lessons
and learning are framed positively. Hard lessons are easier to hear and act on if framed in an appreciative
way. Also, hardworking individuals and organizations with good intentions and solid commitment are not
exposed to unnecessary public criticism and attack. These principles also provide an additional layer of
protection to the privacy and confidentiality for our respondents.
Finally, while the material presented here is well-grounded in the evidence and analysis, it is necessary to
acknowledge the current political and cultural climate for Aboriginal people in Canadian society. Prejudice
and discrimination are still the norm and often information about Aboriginal people reinforces stigma
rather than building towards positive futures and programming. The fourth principle is imperative: “Nothing
about us without us.” It is the participants themselves who must say ultimately whether the material
gathered is safe to release. In this case, the unanimous opinion of those consulted was to strongly advise
making the findings public.
Using these principles to carry out and disseminate findings may be more labour-intensive but, at the
same time, it is a far more effective and respectful process for all concerned and is more in tune with
Aboriginal ways of knowing and being. This also increases the relevance of information shared. Overall,
enacting these principles ensures any research work with Aboriginal people is respectful, relevant and
effective and will contribute to positive changes for the agenda of ending HIV in northern BC.
8
the northern way of caring
Introduction
Improvements, there’s always room for improvement.
(KI 12-12-12-05)
HIV knows no bounds. The virus does not discriminate; HIV does not care about your age, your race or
your gender. However, highly marginalized populations are at greater risk of contracting the disease. HIV
is 100 per cent preventable but the numbers of those being infected are increasing in certain regions.
Demographic shifts are occurring in certain areas and it is important to raise as much awareness as
possible in order to reduce the number of HIV transmissions.
This report is a candid look into the lives of those living with and affected by the HIV virus. As clients living
with HIV, they are accessing multiple health care service providers and facilities on a daily basis. The
number of barriers, obstacles and legal loopholes the HIV-positive client encounters is enough to make
a healthy person sick and tired. This is the reason the river-mapping approach to the PJM process was
developed — so that the real experts could be listened to on how the health care system works and how
it can be improved for those living with HIV. These real experts, people living with HIV, understand what is
going on in their bodies, far more than they are given credit for.
It is time the silence around HIV ended. And it is time to change how persons living with HIV are treated
within the health care system. Persons with HIV need and deserve to be heard. As they gather strength
and become more assertive about their needs, the system will need to be prepared. What they have to
tell us may be painful, challenging and difficult to hear. But they have found the courage to speak up and
tell us their truth, and are now trusting that health care providers will listen.
Support to me means talking to somebody who’s positive when they’re feeling down or
supporting the family, supporting the individual, like talking to the family, giving guidance or just
sitting and listening to the people. That was very, very important when I was first diagnosed. I
was looking for support and there was nothing, there was nobody to talk to. I was in the dark.
(KI 12-12-12-05)
Activities: what we did
The patient journey mapping process is an ideal method for gathering information from client groups. The
success of this method is dependent on the clients slated to be involved in this process. The Aboriginal
community, for example, many of whom carry scars from past negative experiences with the health care
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
9
system, may be difficult to engage in any process connected to the health care system. Further, literacy
issues, including profound differences in iconography and metaphor, may interfere with the frank sharing
of journeys within the system. Yet, these are the stories we most need to hear, as they provide the
launching pad for meaningful and effective improvements to the health care system for those currently most
marginalized. Research also shows that improvements to the margins of any service result in improvements
for all – an all-embracing inclusiveness that is not present when improvements are made for the community
agencies involved.
Background
How can we work with you to improve the journey for you?
Take HIV away from me…
(KI 26-11-2012-02)
Prince George (Northern Health) was one of the two locations within British Columbia that participated
in the provincial Seek and Treat for Optimal Prevention — STOP HIV/AIDS pilot project from 2010-2013.
Vancouver’s Downtown Eastside (DTES) was the site of the other pilot project.
The HIV-positive population in Prince George was identified as a priority site since the region along
with the DTES represents a majority of BC’s HIV cases and displays increasing rates of HIV. The STOP
project has clear mandates and guidelines and it was because of these goals that this report was written.
STOP project goals:
• Ensure timely access to high quality and safe HIV/AIDS care and treatment;
• Reduce the number of new HIV/AIDS diagnoses;
• Reduce the impact of HIV/AIDS through effective screening and early detection;
• Improve the patient experience in every step of the HIV/AIDS journey; and
• Demonstrate health care system and cost optimization.
The STOP project’s strategic goals are supported by the following initiatives:
• Transform the screening process for HIV;
• Streamline HIV/AIDS diagnosis and linkage to care;
• Continue developing site-specific programs to consistently deliver high-quality services across
participating pilot sites;
• Address the determinants of health that are negatively influencing the health of people living with
HIV/AIDS; and
• Engage in a collaborative process that will allow people to learn from each other and turn knowledge
into practice.
10
the northern way of caring
The STOP goals allowed this Patient Journey Mapping (PJM) report to be developed under the direction
of Bareilly Sweet, Northern Health’s Regional Coordinator, Blood Borne Pathogens Services. Patricia
Howard, Northern Health’s then Aboriginal Coordinator, was the project’s principal researcher. Dr.
Theresa Healy, Northern Health’s Regional Manager for Healthy Community Development, and Dr. Tina
Fraser, UNBC Assistant Professor and Aboriginal Education Coordinator, both provided collaborating
research support.
In efforts to work collaboratively with Northern Health’s partners, and in order to identify and address gaps
in HIV services, it was determined that the PJM report would be an essential source of information. The
results and recommendations gathered through the PJM are included in this report so that access to care,
along with a seamless link between patients, service providers and specialists, can become a reality for
HIV-positive patients in northern BC.
Patient mapping was developed as a way to see things from a patient’s perspective and ensure that high
quality health care is being provided. We are also looking for ways to streamline and reduce the journey
as we “respect the person becoming”. That is, even the most well-intentioned people make mistakes and
how we react to their mistakes means we can help people grow and learn because we respect who the
person is going to be. For many HIV-positive persons, the stigma and discrimination that comes with the
disease is too much to bear. Hence the reason that many HIV-positive people in the north are not ready or
willing to come out.
“The fear of being outcast and shunned by my people was terrifying. I could think of
nothing worse…”1
I remember that day so vividly because the words coming out of his mouth, it was just
like it was in slow motion, it’s like I was there but I wasn’t... because at that time, you
know it was like a death sentence, right? It’s not like it is today and I just I ran out of
the room and was just like, ‘No, this isn’t happening I’ ll just do myself in… I don’t want
my family to find out.’
(KI 26-11-2012-01)
Persons with HIV are prejudged the moment the words, “I am HIV-positive” leave their mouths due to
preconceived notions surrounding the way the virus is transmitted and contracted. This prejudgment is
even more difficult to deal with in rural and remote areas in the north where confidentiality and privacy are
at risk. As a result, many persons with HIV remain silent about their health condition.
I’ve been blackballed, as they say. They all don’t want anything to do with me.
(KI 26-11-2012-04)
1
Blondie, Bloodlines, 2012: 12.
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
11
This silencing is made even more complicated by the judgments that HIV-positive persons feel they
receive from many members of society. They feel their past decisions are constantly being held against
them and there is no room for acceptance or support to change and grow. In order to break this vicious
cycle, each person needs to be viewed as an individual and given respect for where they are at and the
realities that surround their lives. The voices of the patients who took part in the PJM were very clear on
the links between not being seen as an individual, being judged by their past and the impacts on their
treatment in the health care system.
People living with HIV who participated in the PJM very clearly articulated their need to be seen and
heard as individual human beings with rights and feelings.
Every individual is just that, an individual, okay? You can’t just put us into a
box in a medical journey and treat everybody exactly the same way.
(KI 26-11-2012-01)
It’s like nob
ody
gives a fuck
get the
I
o
d
w
o
H
me
t
a
k
o
lo
o
t
Dr.
n
as a perso
I feel like because they think I get the, ‘you were a drug addict, it’s in
your head’, or it’s just this and that. And I’m just so over it, you know
sometimes I just don’t even want to see the doctors but I know I have to,
you know it’s part of my life now.
(KI 26-11-2012-01)
As the following quote illustrates, the one place HIV-positive patients and clients expect they should be
able to receive unconditional acceptance is within the health care system. This is an absolute first and
necessary step that people living with HIV need: to be able to access treatment, support and care without
feeling frustrated by the system.
And as soon as they found out I was HIV-positive it’s just like, everybody
didn’t even want to come near me, not even the nurses. I was just like what
the hell is up with this, like, you know. I’m trying to live a life, I work. I
make my own money and all of sudden society just turns their back on me.
How can things
improve if the health
care providers are
not listening to me
(KI 26-11-2012-04)
12
the northern way of caring
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
13
Methods
It’s always a sunny day when I wake up six feet above ground. Doesn’t matter what kind
of anything I have, I always look forward to waking up.
(KI 26-11-2012-04)
Patient journey mapping is an effective and well-tested method for improving the health care system.
However, while working with the HIV-positive population in northern BC, adaptations to this method were
needed for this unique population that generally had negative experiences with the health care system;
low level literacy skills; and a distrust of health care professionals. As a result, transformation of the
patient journey mapping occurred in three ways: 1) visual metaphors, such as the use of a river, were
used in our focus group mapping sessions; 2) narrative storytelling was used to frame the individual
interviews; and 3) a collective and kinesthetic analysis was done. Two focus group mapping sessions
were held, one woman-specific, along with five individual interviews for a total of 19 people involved in the
PJM.
There were some limitations to this method.
• Breadth of outreach: The lack of capacity to recruit people living with HIV in more mainstream
sectors (blue and white collar) means this report speaks primarily to the experiences of the more
marginalized population.
• Capacity to support research among local AIDS Service Organizations (ASOs): With
reduced resources and with negative past experiences with research, some organizations were
unable or reluctant to participate or contribute.
• Researcher time constraints: All researchers carried full-time work responsibilities within their
mandate and working on this report was a “side of desk” addition to their workload. This was
further complicated by the challenge of coordinating the different schedules and mandates to
ensure the research was brought forward.
Outreach and recruitment
The participant recruitment process for the PJM would not have been possible without the help of
Northern Health’s partner organizations. The researchers met with the HIV care clinician and Primary
Care Coordinator at Central Interior Native Health Society (CINHS) and shared their vision. They were
very receptive and recruited the participants for the PJM on the researchers’ behalf. This approach,
often called the touch on the shoulder, refers to the necessity of trusted ambassadors who can reassure
individuals that the project is going to be culturally safe and helpful for all. This process included
reassurance that there would be no direct-service providers involved in this session. This enabled the full
and informed participation of the HIV-positive individuals.
14
the northern way of caring
Researchers made a poster with all the details of the mapping session for service providers to distribute
to ensure that all information was consistent. Researchers arranged all of the focus group sessions
because they understood the workload of the recruiters. A continental breakfast and a lunch was
provided. This was to recognize that there were many barriers to the participants and food is also a
universal commonality. Not only did they give up time to attend the focus groups, but the reality is
that hungry people cannot participate fully in an activity. Honorariums were given to all participants to
recognize the value of their time and contributions.
The first group session took place on November 19, 2012, and comprised seven participants, all of
Aboriginal descent and both genders. However, during the recruitment process for the first
group session, several potential participants expressed fear of contributing in a group session.
They saw the value of the work and wanted the opportunity to share their story, but not in such
a public venue. As a result, the principal researcher conducted five individual one-on-one
interviews with those who wanted to remain anonymous. This process allowed the researcher
to address the potential loss of confidentiality within focus groups. Researchers can control
anonymity outside the focus groups but cannot guarantee it within the group setting.
It’s difficult t
open up – th o
ere’s
confidentiality no
a mongst peer
s
The mapping sessions were done in a unique manner as it was necessary to ensure all
participants were able to contribute equally. The data collection process laid out the data as people
contributed to it in a visual format. This process reflects a cultural approach to building knowledge
together that is familiar to Aboriginal communities. Listening respectfully to each other and contributing
corrections where needed, ensured the research data became a collective creation.
There were three researchers with assigned roles within the journey mapping. The first focus group
session was facilitated by two of the researchers at the front of the room who were prepared to use a
visual representation to describe the HIV-positive client’s journey. The third researcher was at the back
of the room and, like a fisher on the side of a river netting fish, she captured key concepts and ideas on
sticky notes. The different colours of Post-it notes referred to themes she saw emerging in the room. This
quiet and supportive role, gathered a literary documentation of the visual experience.
Feelings
Negative
Experiences
Challenges
Barriers
Recommendations
The metaphor of the river journey emerged from the PJM introduction and opening circle. For the visual
experience, an outline of a river was drawn on presentation paper that stretched the length of the meeting
room. This was placed on the wall for all participants to see.
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
15
In the introductions and opening circle, it was explained to the participants who the researchers were
and their hopes for the day. Participants were asked to name one thing they thought health care service
providers needed to know about their journey. It was in this opening circle that the researchers began
to see a strong desire by patients/clients to trust and share. It was from this opening discussion that the
metaphor of the river originated.
Once the opening circle was finished, participants were asked,
“Where did your journey begin?” As their answers developed,
the researchers began to draw their experiences on the river.
It is important to note that the researchers are not artists. A
new tool, called graphic facilitation, uses words and freehand
drawings to illustrate a conversation or meeting as it occurs. This
communications device requires considerable skills, both artistic
and literary. The graphic facilitator does not usually participate in the
group process, but rather remains outside and observes.
For project purposes, it was determined the
graphic facilitation piece, even if raw and amateur,
would allow everyone to share in the vulnerability
that is often expected of the research participants. This raw attempt to capture their ideas
was more suitable in this circumstance. Participants even duplicated the drawing on scrap
pieces of paper as they saw their story and journey take visual shape.
We need fa mily
s
Healing Progra m re
for people who aed
suffering or affect
In response to their understanding and ownership of the river, a copy of the data
illustration from the mapping sessions will be provided to the individuals who participated in the sessions.
This is a way sharing with people about the importance and value of the work they undertook.
The second focus group was convened to allow women to explore gender-specific issues in a safe
environment in a location that was mutually agreeable. Though following the previous agenda, this
focus group also included two women who were not HIV-positive as they misunderstood the purpose
of the group. However, they were invited to stay by the other participants of the group who valued their
perspective. They knew that these two women were being affected by HIV through parents and partners.
This group may well have produced richer
data because of this additional perspective.
We want to be
involved, do a Poster
ca mpaign - we will
do it - art therapy
The second focus group also continued
on with the river theme but, during this
session, they were invited to draw the images
themselves in the areas they thought were
most important and relevant. This allowed for
greater autonomy and ownership of the river.
The facilitators wanted them to know this was their journey, their story.
The women in the group were so pleased they asked for more similar
sessions as they felt the art therapy was very therapeutic and healing.
16
the northern way of caring
The five individual one-on-one interviews were electronically recorded and transcribed. They were
approximately one hour in length and provided an additional solid body of knowledge and were able to
function as validation test points of the maps produced by the focus groups. This dual process provided
a rich data set for thematic analysis. The river map from the first session was included in the individual
interviews so that those who did not feel comfortable or ready to share in the larger group could still take
part in the group discussion and dynamics. The role of interviews as validation for the mapping session,
using the map to share what the group had found, deepened the understanding of the data collected and
the meanings ascribed by participants.
I just survive day to day and that’s the way it is.
(KI 26-11-2012-03)
Interviewer pointing to a spot on the river map from the first focus group: “So what they
were saying was, as they were going along their journey, is that they’re in their canoe but
they are all alone and they only have one paddle…”
Interviewee: “So they’re just going around in circles.”
(KI 26-11-2012-01)
“For most of the individual interviews, I was the only person outside of the nurse/doctor
who knew they were HIV-positive. They did not want anyone to know. It was that painful.”
- Researcher reflections
The River
We are all swimming in the same river.
(KI 12-12-12-05)
During the compilation of the data, it was determined that the rivers from each focus group needed to
be combined into one depicting the major themes. The idea of how to combine the rivers was discussed
when it was decided that none of the researchers had the artistic capacity to produce drawings for the
cover of the report. So, they brainstormed as to how the report could be more visually appealing. It
was decided to use local talent, and the person should be of Aboriginal descent with the art reflecting
Aboriginal worldviews.
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
17
18
the northern way of caring
Findings
I know I’m not alone in having that feeling of rejection and having a hard time with asking
for help for that fear of not being able to receive it, and in a way that almost sounds like
being spoiled or something but it’s not that way...
(KI 26-11-2012-01)
The researchers had a very rich set of data and began the process of analyzing by identifying common
themes. Our first analysis of the data resulted in five themes and four to eight sub-themes each. Our second
cut enabled us to condense and synthesize. In our final version, three themes and sub-themes emerged.
General observations
One of the central themes that emerged throughout the STOP HIV/AIDS pilot project is that, despite the
many obstacles in place, there is an incredible amount of strength and resilience within the HIV-positive
population. It was an honour and privilege to work with such an amazing group of individuals.
Shame, discrimination and stigma
In the PJM focus groups, the major finding related to silencing. The common experiences around stigma,
discrimination and shame all created a perfect storm that swamped any attempts to engage HIV patients in
a meaningful discussion about the health care system. However, there were some discussions
related to how they were treated by health care providers in the health care system which
highlighted the implications and outcomes of this treatment.
‘You’re a junkie… you always will be.’ That’s what they’re saying.
(KI 26-11-2012-03)
The nurses
ye
“Dangerous lled,
blo
coming thro od
ugh”
Some implications and outcomes reported in the sub-themes were: lack of compassion, lack of HIV
knowledge, lack of knowledge of the determinants of health. These were all embedded in the service
provided by the agency or program that the patient attended.
At the hospital I kind of feel like their attitudes are different…The nurses.
,
s
a
w
d
r
a
e
h
All I
Like I can tell when somebody’s talking about you, type of thing. They’re
m
o
fr
y
a
w
a
y
a
t
“S
talking about you but they’re just…you can sense it, you know.
”
S
D
I
A
t
o
g
s
’
e
her, sh
(KI 26-11-2012-01)
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
19
Systemic barriers
In addition to the stress of dealing with individual health care service providers who failed to offer
compassionate service, participants identified additional stress triggers that are imposed by the system
itself. Health care and other community agency policies meant they were told things like:
• You can only talk about one thing to the doctor
He said that’s something we’d get into at another time.
(KI 26-11-2012-01)
How can I on ly
discuss one
problem?
• Patients/clients may have to wait to see the doctor, long beyond the appointed time,
with no recognition of the cost to the HIV-positive patient (rides that are no longer available, meals that
were skipped, medication regimes that have been disrupted, other appointments they may have, etc.).
I just wish it wasn’t such a long wait period to see a doctor. Like, if I
want to make an appointment, because on a daily basis I have different
things I have to do, like, I go to my groups and things like that. So it’s
not like I can just hang out in a doctor’s office all day waiting for an
appointment, right? Like, I understand that they’re very, very busy here but
maybe they should get another doctor or two or something you know. So they can meet the
needs of the patients a bit better.
If I am late for an
appointment I am
told to come back
next week
(KI 26-11-2012-01)
• Patients/clients are not asked for important information that could impact treatment and care.
They fast track you once you’re in there. Once you see the doctor or whatever they fast
track you, they don’t ask you proper questions. I don’t see results that I want
to see… I want to see what’s going on with my blood work. I didn’t get to see Informat
ion
that, that was just rather broke my little heart. Cuz, I like to know I’m the out, files is left
are not
type of person who wants to know the numbers. Cuz once the numbers
updated
go down I have the ability to change that, not the medical worker.
(KI 12-12-12-05)
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the northern way of caring
• Patients/clients are repeatedly asked for the same information by different people even on the same day.
How frustrating it is to try to sit there and explain this to the doctors and the
health care professionals or to your service providers over and over and over again.
It’s like banging your head against the wall and expecting a different result. (KI 26-11-2012-01)
ed
I get so frustrat y
having to tell mver
story over and o
again
Outcomes
A third theme emerged from the outcomes of the attitudes and barriers expressed in the first two themes.
Lowered capacity in spiritual, cultural and mental health
I am tired of
hearing I am a
junkie
• Patients/clients feel unimportant, lonely, uncared for, and angry.
And I just feel like one of those people that is starting to fall between
the cracks type of thing, you know?
(KI 26-11-12-01)
Reduced access to services
• Due to shortages of support services, health care programs are under-resourced, full-time positions
are limited resulting in a lack of timeliness, which contributes to people becoming lost to care.
With one of the service providers it felt like I tried to get in contact with him
over and over and over again. Left messages on his cell phone, left messages in
office and I felt like I was not important enough or my situation wasn’t urgent
enough to even just get back to me and say you know I’m really, really busy but
I’m here and I hear you, type of thing.
There aren’t enough
appointments to
care for me
(KI 26-11-2012-01)
• The fractured nature of the system produces silos, different languages, standards and principles.
The service
providers need
to talk with the
specialists more
It’s frustrating and sometimes I get a little ornery with the reception because
it’s like ‘well just book me already, you know what I need. I can’t wait that
long because my meds are going to run out before then and then what am I
gonna do,’ you know?
(KI 26-11-2012-01)
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the northern way of caring
Barriers to Excellent Service
But they need to understand me, where I’m coming from. Cuz I’m the one who’s positive
and they’re not. They don’t live inside me, I do.
(KI 12-12-12-05)
The level of care for those living with and affected by HIV is based on available funding. Throughout this
reporting period, it has been often noted that assistance is disproportionately based on socio-economic
status. The regular blue collar worker with HIV has also become a silenced voice.
“The HIV virus has vilified individuals and turned them into second class citizens. Not
only do insurance companies refuse to cover them, their private sexual lifestyle has
now been criminalized.”
Darren Lauscher - Interview 01.30.13
I’ve always been careful. I mean, I’m a very sexually active person but I didn’t realize you
could get charged for that when you don’t disclose that you’re HIV-positive, right?
(KI 26-11-2012-04)
In Prince George, there are no support services available to those non-Aboriginal people who are not
close to or living on the street. However, they are integrated with the other agencies, therefore they may
not be the “right fit”. This also holds true for those blue or white collar individuals who find out they are
HIV-positive and feel they are on their own. They do not (and will not) access the services currently in
place. This is a barrier that needs to be explored further as the services in place do welcome all people.
I don’t know. I don’t know anything about the meds, I don’t know anything about when
I was, when I was first, when I first got diagnosed it was hard for me to understand
the medical technology. With all these big words they were using and everything it was,
‘What? Can you slow down?’ ‘Can you like take it down a notch?’ I don’t even understand
what you’re actually saying.
(KI 26-11-2012-04)
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23
Another barrier presented is that many people living with HIV are crying out for education and support.
Some related education and support tools include:
• Life skills workshops;
• Nutrition;
• Education;
• Health;
• Symptoms;
• Peer support;
• Medication and interactions; and
• Cultural and spiritual teachings.
These are HIV prevention and management strategies which are highly cost-effective and will produce
significant long-term savings to the health care system.
Fact
Each new HIV infection will cost the B.C. health-care systems somewhere between $180,000 and
$225,000 in direct costs alone per person per lifetime.2
When the indirect expenses related to sickness and years of life lost are taken into account, the
real cost of HIV/ AIDS rises to $1 million per lifetime for every person living with HIV/AIDS.3 Among
injection drug users alone, an annual investment in HIV/AIDS prevention of $1 million per year over
five years would result in savings of as much as $24 million.
Not everything can have a fixed dollar value; at the same time there are considerable savings to family
members, loved ones and society as a whole when people living with HIV are healthy, contributing
members of their communities.
24
2
GPI Atlantic: The Cost of HIV / AIDS in Canada as cited in “Priorities for Action”
3
Priorities for Action in Managing the Epidemics –HIV/AIDS in British Columbia 2003 -2007.
the northern way of caring
Patient Journey Mapping - HIV / AIDS within the system
Lifestyle risks
Positive test
Timeline
Diagnosis to
first contacts
1 week
From first
contacts to
resources
and support
1 week
From well
supported
resources to
specialists
3-5 months
Initial disclosure
to patient
Counseling
support
Pharmaceutical
support
Exit/Avoid/Delay seeking
treatment and support in the
health care system; return to
high risk
Supportive and well
resourced encounter
Nutritional
support
Specialist
care
Treatment and
care in place
Family support
in place
Diagnosis to
first contacts
3-5 years
From first
contacts to
resources
and support
2-4 years
Peer support
community based
service
Appropriate
referrals
Timeline
Compromised
determinants
of health
From well
supported
resources to
specialists
5-7 years
Undetectable
3-6 months
Conflict with the
law, intermittent and more
complex conditions
Undetectable
Deterioration, loss
of quality of life,
premature mortality
Culturally safe
Respectful attitudes
Stigma and discrimination
This innovative approach to patient journey mapping generated much rich data. It was a relatively simple
task to undertake a systematic approach and translate it into this figure – see above. It is apparent that
the discrepancy in timelines — between the ideal and actual journey through the system from diagnosis to
treatment — hampers effective service at every stage of the journey. There is an opportunity, by using this
tool, to not only identify the gaps but also build the capacity to shepherd people from their diagnosis to
treatment. This process can be sped up through relatively simple and cost-effective methods. By ensuring
respectful attitudes and cultural safety is in place, the stigma associated with HIV will be eliminated, or at
the very least, reduced. Additionally, with the stigma and discrimination out of the way, the efficacy of the
health care system will be greatly improved and the services will be accessible for people living with and
affected by HIV.
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the northern way of caring
Recommendations
No, I don’t like groups. I’m not a group person I stay by myself. I don’t even see my spouse
anymore, that’s how scared I am. I need counselling. My mom doesn’t know. I’m not the
kind of person to open up.
(KI 26-11-2012-04)
Best practice principles
During the individual interviews, the consensus emerged around best practice
principles for care. These included:
• Reduce shame – ensure the least amount of people know they are HIV-positive.
I don’t tell anybody anymore because of negativity.
I a m embarrassed
to go to PLN…
everyone will know
(KI 26-11-2012-03)
• Protect confidentiality – ensure accessing services does not result in the broadcasting of a health
status that should be private.
Doctors talk so loud As soon as I found out, my whole family, just right away, it was on Facebook.
in clinics and hospital. And it was all my mom. The one person that I’m supposed to love and she
They announce to
fucking hurt me so hard. I still love her; I just can’t respect her the way I
everyone I am HIV+ used to… ‘Oh, my daughter’s dying she’s got HIV.’ If I’m dying, I’m like ‘Why
am I still here?’ I haven’t talked in a while… about this to anybody.
(KI 26-11-2012-04)
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• Address ignorance and lack of respect proactively and effectively.
I keep my head
down – people
talk
At the hospital I kind of feel like their attitudes are different, yeah. I just face
so much of it [rejection] in my life that I really don’t need it from people
that are supposed to be a professional and those supposed to be helping you.
(KI 26-11-2012-01)
• Improve communication and understanding around any delays or difficulties.
y stay
a
d
8
1
n
a
I had
was not
I
,
l
a
t
i
p
s
in ho
e process,
h
t
f
o
d
e
inform t know what
I did no going on
was
It’s my other prescriptions that I’m having problems with, as well. I
think I don’t understand why they don’t just put refills on them because
I’ve been on them for so long. I mean nothing is changing, right?
(KI 26-11-2012-01)
• Address determinants of health by ensuring ancillary support services are
accessible, well resourced, diverse and culturally appropriate.
I can’t find any
culturally appropriate
teac hings
They don’t have the same one-on-one contact anymore. They have staff that’s
way bigger — they just don’t have time for people now.
(KI 26-11-2012-03)
• Support patient’s self-advocacy and self-care – recognizing well-educated, well-supported
individuals are the first line of defence in prevention and the first step to overall well-being and
quality of life.
I’ve been in my body [xx] years, okay? I know when something is wrong…
don’t put me in a box and say, ‘Well, no, it can’t be this because this is
what the book says…’
(KI 26-11-2012-01)
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the northern way of caring
I need to have a
say in my care
Service providers need to invest time, money, education and support so that current practice principles
identified by the respondents to the PJM result in excellent health care service becoming routine for any
person living with HIV. This means that staff who are resistant and hostile to HIV-positive patients/clients
must be offered supportive training to change their attitudes. Establishing a zero tolerance for less than
the best care must be articulated by senior leadership in clear and unambiguous terms. Further, human
resources must address hiring practices to ensure that professional skills and standards are high for
employees across the board. Management will need to manage higher expectations around “less than the
best” practices within their sectors. Management should also:
• Invest in the services that allow service providers to meet the needs of clients timely and consistently;
• Reduce the four-to-six week period for HIV-positive persons waiting to see a doctor;
• Ensure that the services promised are actually in place; and
• Practice proactive internal and external outreach.
It has been suggested that various organization could post the various services they offer online to
increase awareness. This would make it easier for the clients and they could become more proactive
in their health care journey. Even though the clients may have been informed of the services each
organization offers upon initial consultation, it is very difficult to remember everything and everyone. An
event calendar for distribution would also help the clients and other service providers become aware
of exactly what is going on and when they can access services. This transparency would also lead to
greater accountability:
• Peer Advisory Council within Northern Health (NH): There needs to be an NH advisory council made
up of only HIV-positive clients and patients who are supported at arm’s length. The coordination and
mandate of the council could fall within the mandate of an HIV-positive peer coordinator position
within NH. An overall task would be to foster improved care by soliciting the advisory council about
their experiences and to offer their recommendations and support to best practices around HIV care
and treatment within the system.
• Upstream approach: Increase HIV-related education to health care staff and community.
Commitment of resources to address the Determinants of Health:
• Housing: The participants involved with the journey spoke of their housing challenges. For
Aboriginal people, this is one of many factors that need to be addressed. The hardship of
budgeting or maintaining monthly rentals is difficult. The funding is limited, therefore it is not
unusual for them to live in over-crowded dwellings, particularly in rural or remote settings. When
the participants move away from their family and cultural networks into urban settings, it becomes
an additional challenge to the health and well-being of the individual or families. The rentals are
beyond their affordability, and they may have problems adjusting to their new location.
• Food security: Nutrition and physical activities are important to maintain health and well-being.
Participants involved with the journey mapping spoke of traditional hunting, fishing, and berry
picking. They spoke not only about food but the exercise involved in retrieving food. Nutritional
foods are not always available to people who have limited funds. One participant shared her
The Depth of Water Requires Knowledge: Listening to the Voices of the HIV Patient Journey
29
story by saying, “It’s hard enough getting up in the morning to face the world let alone eating,
and monitoring medications.” One participant commented, “Sometimes I forget to eat and have
to remind myself that food and medication are necessary.” Champions need to lobby for change
in the provision of healthy meals.
• Life skills: What do life skills mean to the individual(s) who are challenged with chronic health
problems? The facilitator and co-facilitator in the discussion heard the women saying, “We were
never taught the skills that many of our counterparts have. Many of our grandparents attended
residential schools and the ripple effects of trauma were passed down to their children.” They
also said, “My parents had their own challenges, and we raised ourselves on the streets.”
Life skills are necessary to have and for many who do not have the resources, professional
caregivers and providers will need to be a part of a transformation plan. For example, the
participants will need to be involved in the decision-making of their cultural safety plan.
• Income: The challenge, as mentioned earlier, is budgeting with what little the participants have.
A few people shared their concerns: “We try to make do with what we have but always come up
short until the next time.” By the time the bills and rent are paid, there is little to no money for
proper nutrition. Fast foods are more of an option than shopping in a grocery store. Milk, bread,
fruits, and vegetables are expensive.
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31
Conclusion
I’m just like, ‘Am I going to die or what?’
(KI 26-11-2012-04)
Health care providers do not get to pick and choose who their patients or clients are, but they can choose
how they treat and support them. A first foundational step is to offer respect and support without judgment
and to express respect for the people and their choices. This first stepping stone encourages HIV-positive
patients/clients to take their first step towards a journey of wellness.
Providers also need to recognize that the key to working with this population is to provide effective care
and treatment for persons living with HIV. Care providers can be champions, advocating for those living
with HIV to improve access to education, community supports and treatment. Ultimately this will provide
better informed decisions to improve outcomes and their futures.
Fortunately, beliefs around treatment are changing, and the distrust of the health care system from an
Aboriginal perspective is being repaired and reduced. The western medicines, such as antiretroviral
medications (ARVs), are being recognized as beneficial. More people are now willing to take ARVs at an
early stage as a way to control HIV and prevent its spread, rather than just take it when their disease has
advanced and they have become deathly ill.
HIV challenges us to be better than the virus; to overcome barriers such as race and gender and class
and status. HIV-positive patients and clients should be treated by health care and service providers with
the same respect given to persons who are not afflicted with this disease. Northern Health is fortunate
that many of its service providers are beacons of hope to people living with HIV. They are trusted and
effective because of the trusting relationships they have worked to establish. These pockets of excellence
promise hope; they are the exemplars of how to care for those living with HIV in ways that can enhance
health and well-being while reducing the risk of the virus being transmitted unchecked.
The voices of those living with HIV are coming to us across a distance marked by trauma and betrayal. It
is their courage and hope that can guide us as they reach out once more, to ask us to be their partners in
care, treatment and support.
Is there one thing that you think service providers or anybody needs to know about your
journey? Just that I’m hopeful that things do change, in the system.
(KI 26-11-2012-01)
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