Creating a Circle of Care
Vancouver Native Health
Society
• To improve and
promote the physical,
mental, emotional
and spiritual health of
individuals, focusing
on the Aboriginal
community residing
in Greater Vancouver
Vancouver Native
Health Society
Services
• Primary & specialist medical care;
Psychiatry & Infectious Disease
• Food security & hot meals
• Nursing & Social Supports
• Drug & Alcohol and Mental Health
Counselling
• Dental Care, Ophthalmology, &
Neuro-ophthalmology
• Intensive Case Management team
Approach
• “one stop shop”
• Strive to be accommodating,
supportive, & non-judgemental
• “Aboriginal cultural safety”
Aboriginal People &
Vancouver‟s DTES
• One of every three
Aboriginal People in
Vancouver lives in DTES
• Poverty
• Inadequate housing
• Mental illness
• Drug Addiction
• Injuries due to accidents
and violence
Background
Downtown Eastside:
• Pop.: 16,000; ≈ 25% Aboriginal1
• Inadequate housing & poverty
• Mental illness
• Drug addiction
• Violence
All DTES Aboriginal IDU Non- Aboriginal IDU
HIV
Prevalence 18%1 28%2 14%2
Incidence 1.61 3.9 /100 per. 2.3 / 100 per. yrs3
yrs3
Mortality 40 x the rest
of BC 1
(1) CHASE final report, VCHA, May 2005, ttp://chase.hivnet.ubc.ca/project/pubdocs/CHASE_Reports/CHASE_Final_Report.pdf, accessed on May 1, 2008.
(2) Tyndall, Mark etal. “HIV seroprevalence among participants at a Supervised Injection
Facility in Vancouver, Canada: implications for prevention, care and Treatment” Harm Reduction Journal 2006, 3:36
http://www.harmreductionjournal.com/content/3/1/36
(3 Wood, Evan etal. “Burden of HIV Infection Among Aboriginal Injection Drug Users in Canada” American Journal of Public Health, March 2008, Vol 98,
No. 3.
British Columbia
Aboriginal People:
• 4% of the general population
• 13% of new HIV infections
• less likely to engage in effective care
• twice as likely to die without ever
receiving anti-retroviral treatment
(ART) compared to non-Aboriginals
CHASE HIV Prevalence 1995-2004
40.0%
35.0%
30.0%
Incidence
25.0%
20.0%
15.0%
10.0%
5.0%
0.0%
1995 1996 1997 1998 1999 2000 2001 2002 2003 2004
Year
Aboriginals Non-Aboriginals
CHASE Cohort HIV incidence - based on 3500 residents from the Downtown Eastside
Vancouver Native Health
Clinic
• HIV positive population 339 people
(2006)
• 33% on ART
• 50% Aboriginal, 50% non-Aboriginal
• HIV related annual mortality rate = 9%
(similar to those found in the developing
world)
• Complete HIV Care For Native Urban
People Program (July 2007- June 2010)
Barriers for Aboriginal People
to Access HIV Care
• Poverty* • HIV related stigma &
discrimination
• Educationally,
economically and • Drug addiction
politically
disadvantaged • Social isolation
• Lack of respectful • Depression &
culturally sensitive Anxiety
services*
• Housing conditions
• Racial that are substandard,
discrimination* unsafe, and public
health hazards
*The Red Road - Pathways to Wholeness BC Aboriginal HIV/AIDS Task Force, 1999
• Aboriginal people are
disproportionately affected –
nearly twice as likely to become
infected
• Aboriginal people are more likely
to become sick and less likely to
start or do well on treatment
• Antiretroviral therapy is effective
but the barriers to uptake are
numerous and challenging
• HIV treatment programs need to be
well adapted to the needs of
Aboriginal People with HIV and
embrace a culturally sensitive
approach
Health Care in Marginalized
Communities
According to a DTES walk-in medical clinic
physician, “There is no discrimination in this
Clinic. It is remarkable that we will take anyone
-whether they are disheveled, inebriated,
whatever! our function is to assist people in
this area and we are doing it.”
Clinic health provider: “They are difficult people, most of
the people we see could quite easily get rejected in a
standard practice, you know, because of difficult
behaviour. They are impatient, can’t wait very long, they
can be aggressive, they don’t dress normally, don’t
necessarily take baths, they can’t make appointments,
and often don’t follow up. So you have to try to be more
tolerant of this sort of behaviour.”
Respecting Culture
• Respect for Aboriginal cultures and
knowledge is a basic tenet of our
organization
• This means recognizing the diversity
among Aboriginal peoples – in culture,
language, history, and allocation of
resources, but it also means
recognizing the politics of Aboriginal
identity
Respecting Culture
• Although an Inner City neighbourhood,
the Downtown Eastside (DTES) is a
place of residence for a diverse range
of Aboriginal peoples including:
– off-reserve, on-reserve, status, non-
status, Métis, rural, urban, from
families of prestige/power, reserves
with treaty negotiation, those
without, etc.
Medicine Wheel
Mental
Physical Emotional
Spiritual
Community
Medicine Wheel Values
• Everything is connected
• Balance
• Cycles of change: “an end is a new
beginning”
• Life is a journey / healers walk beside us
Cross-Cultural Medicine
Culture
• Language, beliefs, history, etc.
• “medicine” is a product of culture
Cultural Competence
• understanding your own & appreciating
your patient‟s culture in order to find
common ground with the goal of
meeting your patient‟s health agenda
• Understand the context of urban
Aboriginal marginalized
• Awareness of determinants of
health
• Awareness of tools to facilitate
improved care relationships
• Appreciation of professional
rewards of working with this
population
Physical
Fatigue
Insomnia
Loss of appetite
Poor nutrition
Weight loss
Medication side effects - lipodystrophy
Pain - neuropathic
Recurrent infections
Violence
Mental
Lack of HIV knowledge
Inadequate knowledge about CD4 & VL
Procrastination / avoidance
Poor memory
Emotional
Anger
Anxiety
Depression
Shame
Suicidality
Spiritual
Drug addiction
Grief & loss
Hopelessness
Community
Discrimination & Stigma
Social isolation
Homelessness
Inadequate housing
Poverty / lack of employment
Barriers to leaving DTES
Barriers to returning home
Positive Outlook Program
• The Positive Outlook Program was
established in 1993 to provide care
treatment and support services to all
people living with HIV/AIDS focusing on
the need to improve access to care for
First Nations People
• The program received extra funding in
1997 to expand care treatment and
support services
POP Overview
• Working within the framework of our
model, our primary mandate is to
provide treatment services to HIV+
clients
• Through flexible approaches we
recognize the complexity of needs that
exist as a result of the unique state of
each individual client
POP Overview
• Components of our services include
daily drop-in, food bank, meals, crisis
intervention, advocacy, counseling,
prevention education, maximally
assisted medication therapy and on-site
access to physicians, nurses, social
workers, addictions counselors and
outreach workers
POP Overview
• Staff collaborators within and outside of
the program work with clients in a
variety of community settings
• Strong partnerships have been
established with all existing AIDS
services organizations
• We continue to offer HIV/AIDS care
training opportunities for student nurses
from the University of British Columbia,
the University of Victoria, and Langara
College
Maximally Assisted Therapy
(MAT) at POP
• Community-based approaches
to health-care and MAT/DOT
programs work from a patient-
centered care model and
emphasize community
strengths as opposed to
deficits
• We do not emphasize the
„supervised swallowing‟
component, instead we focus
on therapeutic relationships
Weaving Relationships
Through Storytelling
• “where you from?”
• Listening to people‟s stories
and learning the context of the
lives
• Building therapeutic
relationships
• Walking with people on their
journey
• Providing all aspects of health
care based on their story and
their needs
Towards Aboriginal Health
and Healing (TAHAH)
• A community-based intensive
case management program
developed to engage DTES
Aboriginal people with low
CD4s (under 100) and who are
not connected with services
into primary health care
• Program includes a nurse and
social worker and four peer
community health counsellors
(CHCs)
TAHAH: Capacity Building
• As a peer-based
initiative, the involvement
of Aboriginal people
living with HIV/AIDS is
key to our project
development and
delivery
• Four HIV positive
Aboriginal people were
hired (two males and two
females) and trained to
work as community
health counsellors (peers)
TAHAH: Capacity Building
with Community Peers
• These individuals participated in
training that included harm
reduction prevention, basics in
HIV treatment (types of
medications, side effect
management, the need for
adherence in ARV therapy),
confidentiality, emotional support,
self-care / professional
boundaries, and HIV and Hepatitis
C prevention
TAHAH: Capacity Building
Continued
• The peer health counsellors
are respected in their
community for their shared
histories and common
understanding of issues not
only pertaining to
Aboriginal health, but also
to the specifics of the
Downtown Eastside
community
Aboriginal Healing
We use an adapted
medicine wheel as the
basis for our intake and
case management
program
In this model we look at
the whole person from the
moment of intake
We ask specific questions
about each aspect related
to the medicine wheel and
work with the clients to
address needs in all areas
Maximally Assisted Therapy &
Intensive Case Management
programs can be effective
adherence interventions when they
emphasize:
– Therapeutic relationships (built on
mutual respect, understanding and
compassion)
– Holistic care (contextualizing health in
political, economic and historical
processes)
– Meet the participant where-ever they
need to be met (through home-care,
outreach, flexible schedules)
– Offer health-care and treatment that
incorporates Aboriginal healing
practices
Marginalized Women
Studies show that marginalized women are
homeless, victims of substance abuse, mental
health issues, family breakdown, under employment,
low income, racism and have inadequate access to
reproductive care services: pap smears,
mammogram screening, abortion counseling and
services. Native Health addresses this issue with
interventions tailored to individual needs
Art work by T. Jones
Positive Women Positive
Spaces
„Positive Women, Positive Spaces‟ (PWPS) is a
community-based pilot project that aims to
address the links between structural violence,
health inequities, and HIV/AIDS risk for
Aboriginal women
This program extends our existing services to
create a weekly clinic that is a women-only
space, where women can come to freely access
treatment, prevention, education, support, care
and a nutritious meal
Innovative Intervention
PWPS offers access to physicians and nurses
as well as providing a safe space for women and
children to relax and connect with peers,
counsellors, an Elder, a reflexologist and a
music therapist
Papalooza
PWPS Outcomes
Since its inception over 250 women have
participated in and benefited from the
enhanced services
Preliminary anecdotal data suggests that
women are receiving more services for alcohol
and drug treatment services
Long term impacts of increased community
public health; reduction in mortality rates for
Aboriginal women from AIDS related illnesses;
and reduction in transmission rates
Funded by GlaxoSmithKline-Shire Canada HIV/AIDS Community Innovation Program 2007
Research
Engaging Community
• The AHAH project was the first research grant
where VNHS was a Principal Investigator (PI)
• Too often research in the community is initiated by
researchers from outside; experts who arbitrarily
decide what research questions should be explored
• VNHS has been involved in many research projects
with a host of academic researchers but this is the
first project where they have a central and lead role
in defining the research purpose, outcomes,
methodology and define how results are
disseminated
Decolonizing methodologies
• Ethical research: with, for and by community
• Indigenous communities historically at the margins of
society (impacts on HIV, overall health) and at the
margins of research (only subjects)
• Understanding health and illness in relation to the
historical relations between colonizers and the
colonized
• Indigenous approaches to research?
– How does research get produced about Aboriginal peoples?
– How do we speak to indigenous communities in a way that
makes this research accessible but also fulfill our demands to
the academy where we our expected to have peer-reviewed
publications, grants, and so on?
Multi-methods
• Engaging in a spectrum of qualitative
methodologies including:
– open-ended interviews, focus groups, social
and cognitive mapping, story-telling, journaling,
and visual ethnography
• Our focus of ethnographic methods means
that our methodology is reflexive,
collaborative and participatory
– Participants our involved in the research in a
variety of ways
– Engage with representational issues
– OCAP: Ownership, Control, Access and
Possession
Photographs in Participatory
Action Research (PAR)
• The use of photography and visual images
in participatory action research projects is
a successful strategy to engage
marginalized (often impoverished and
educationally disadvantaged) individuals
into the research process
Photographs in Participatory
Action Research (PAR)
• Photographs and other art mediums allow
participants to document, review and
reflect on strengths, silences and concerns
of their communities to reveal issues that
are often eclipsed by traditional methods in
social and health research
• a powerful medium through which
marginalized community participants can
engage decision-makers in discussions
surrounding health, wellness, and public
policy
Visual Ethnography
Life Beyond This
Representations of the Reflecting on urban
DTES community Aboriginal health, visual
appear distorted, ethnography and
sensationalist, and experimental methodologies
pathologizing in community-based research
What Photos Tell Us About HIV
and Health in the Inner City
• Health and illness are shaped by economic,
political and historical processes (i.e.,
gentrification, contemporary limitations of the
Indian Act, discrimination)
• Direct links between Aboriginality and negative
experiences accessing health-care
• A paucity of services that adequately address the
complex social and health needs of urban
Aboriginal peoples
• A lack of culturally-sensitive or culturally
competent health-care
Improving Access to Primary
Health Care:
Lessons from Two Urban
Aboriginal Health Centres
Research Funded by CIHR
Overview of Study
Context
• This four year study involving two main Phases
• Research partnership between CINHS, VNHS,
UBC, and UNBC
Purpose
(a)To extend our understanding of how PHC
services are provided in an indigenous context
to meet the needs of people who have been
„marginalized‟ by systemic inequities, and
Purpose Continued
(b)To use that knowledge to develop a
preliminary set of PHC indicators that can
reflect the most relevant dimensions of
service delivery in the context of
marginalized people‟s lives and well-
being
HIV, Aboriginal Peoples &
Antiretroviral Treatment
• Aboriginals are more likely to die without ever receiving ART (1)
• Aboriginal IDUs are significantly less likely to start ARVs (2)
• Aboriginals have shorter survival on ARVs.(3)
• “Our study highlights the need for continued
research on medical intervention for HIV-infected
Aboriginal persons”(3)
(1) Wood, Evan etal. “Prevalence and Correlates of Untreated Human Immunodeficiency Virus Type 1 Infection among
Persons Who Have Died in the Era of Modern Antiretroviral Therapy” JID 2003:188 (15 October)
(2) Wood, Evan etal. “Slower uptake of HIV antiretroviral therapy among Aboriginal injection drug users” 2005 The British
Infection Society www.elsevierhealth.com/journals/jinf.
(3) Lima, Viviane D et al. Aboriginal status is a prognostic factor for mortality among antiretroviral na e HIV-positive
Age-Standardized Mortality Rates for HIV
2001-2003 (Rates per 10,000 population)
2001,2002, 2003 ASMR for HIV Death
45.00
40.00
35.00
• HIV age 30.00
ASMR
25.00
adjusted 20.00
mortality 15.00
rate in 10.00
DTES = 40 5.00
x greater 0.00
than the Chinatown DTES Gastown Strathcona Victory
Square
Total 5
community
LHA 162 BC
2001
rest of BC AREAS 2002
2003
Baseline Aboriginal to Non-
Aboriginal Demographic
Comparison
All Non-Aboriginal Aboriginal P Value
Variable % (N) % (N) % (N)
100% 53%
Ethnicity (306) 47% (145) (161)
33%
Female Gender (101) 18% (26) 47% (75) 90%
screening
Pneumovax immunization >90%
Antiretroviral Uptake >90%
Virologic suppression on last > 95%
visit
Drug
Dependency
Unstable Mental
Housing Illness
Barriers to
HIV Treatment
Hepatitis C Misinformation
Co-infection
Poor access to
Criminal medical care
enforcement Lack of patient
education
CHCNUP Services
Information System (Database)
Clinic SPH
RN 10C
Liaison
Clinic Outreach
MD RN
Intensive Case
HIV Specialist
Person Management
team
Pharmacist
Living Neuro-
Psychiatr with HIV Ophthalmology
y
Alcohol & Ophthalmology
Drug
Counselling First Nations POP Dieticia
Mental Health Squamish Red Fox n
Counselling Minister/Elder Active Peers
CHCNUP Results To Date
At the time of analysis a total of 306 patients had been
enrolled
For those enrolled for greater than six months (n = 66)
there was a 35% increase pneumovax immunization
rate (77% vs. 48%), a 35% increase in the syphilis
screening rate (85% vs. 50%), a 15% increase in
tuberculosis screening rate (29% vs. 14%), a 4%
increase in ARV uptake (61% vs. 57%), and an
increase of 11% in plasma viral load suppression rate
(82% vs. 71%)
Authors: Tu, David*; Doreen Littlejohn*, Rolando Barriosф, David Mooreф,
Keith Chan, Robert Hoggф, Mark Tyndallф (*Vancouver Native Health Society,
фBC Centre for Excellence in HIV, $Vancouver Costal Health Authority)
CHCNUP Results Continued
• Females with a CD4 6 months
• Aboriginal peoples achieved similar rates of HIV care
engagement, and virologic suppression compared to
non-Aboriginals
• “Aboriginal cultural safety” at VNHS may partly
explain this equalization of outcomes
• On going quality improvement cycles and the
introduction of a “patient self-management” program
may lead to further improvement in clinical outcomes
Phasing of Coping with HIV
(1) Shock & (2) Scared (3) Acceptance
Loss & Alone & Healing
•“my life is over” • Social • Acceptance
•Emotional shock isolation • Ready to
•Lack of • Fear of start
knowledge infecting medications
•Abandonment others • Self-healing
•Withdrawal • Fear of • Taking
•Loss of persecution personal
community • Hopelessness responsibility
•Loss of career
What is HIV Self
Management?
• Two-way communication process --
giving voice to patients
• Interaction between a “patient” and
their provider / “coach”
• Facilitates choice of healthy behaviors,
problem solving, and working towards
personal goals -- “rebalancing the
wheel”
Principles of Self
Management
• Person is at the centre – making decisions
and initiating changes
• Change happens when it is “internally
motivated”:
– belief that people change when it is their
decision to change,
– when they have confidence that they can
change, and
– where change involves the support people
being part of the change journey
• Developing confidence to change is
fundamental and can best be achieved
through small incremental steps towards an
achievable goal
Acknowledgements
• Co-Investigators: Doreen Littlejohn, Mark Tyndall,
Rolando Barrios, Chris Buchner
• Contributors: Archie Myran, Aida Sadr, Payam Sazegar
• POP Patient Advisory Committee (Rob, Rod,
Heather, Eric, Ron, Archie, Lyanna, Ralph, & Annette)
• This research was supported by the Vancouver Foundation through
a BC Medical Services Foundation grant to the Community Based
Clinician Investigator (CBCI) Program at UBC’s Department of
Family Practice
MERCK
FROSST
BC Centre for
Pfizer excellence
in HIV/AIDS
Cultural Diversity
• Have First Nations people on staff and
actively recruit First Nations volunteers
• Increase the role of traditional healing
practices
• Hold talking circles & oral tradition
• Have space available for healing circles
• Hold traditional funeral ceremonies,
smudges, burnings
Art work by T. Jones
As stated by one Aboriginal worker:
“A health system supportive of the medicine wheel
concept of physical, mental, emotional and spiritual well
being (is required) since proper food, clothing, shelter
as well as love, forgiveness, belonging, security,
support, trust, honesty, sharing, caring, and empathy
are characteristics of a healthy and balanced lifestyle”
While it is important to adapt existing services to
be culturally appropriate, Aboriginal people should
not be co-opted into pursuing alternative or
traditional health care methods to the exclusion of
Western medicine
Instead, the Aboriginal community should settle for
nothing less than equality in health services
AIXGWEGWELAS
“May You All Be Well”
Presentation by Doreen Littlejohn, RN and Lisa Zadnik
Authors: Doreen Littlejohn, RN, Dr. David Tu, Dr. Mark Tyndall,
Dr. Denielle Elliott, and Lukas Maitland, BSW,
Artwork done by Trevor Jones