Creating a Circle of Care

1
Creating a Circle of Care
2
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

3
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

4
Aboriginal People Vancouvers 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

5
Background

• Downtown Eastside
• Pop. 16,000 25 Aboriginal1
• Inadequate housing poverty
• Mental illness
• Drug addiction
• Violence

(1) CHASE final report, VCHA, May 2005,
ttp//chase.hivnet.ubc.ca/project/pubdocs/CHASE_Re
ports/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, 336
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.
6
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

7
CHASE Cohort HIV incidence - based on 3500
residents from the Downtown Eastside
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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)

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Barriers for Aboriginal People to Access HIV Care

• Poverty
• Educationally, economically and politically
  disadvantaged
• Lack of respectful culturally sensitive services
• Racial discrimination

• HIV related stigma discrimination
• Drug addiction
• Social isolation
• Depression Anxiety
• Housing conditions that are substandard, unsafe,
  and public health hazards

• The Red Road - Pathways to Wholeness BC
  Aboriginal HIV/AIDS Task Force, 1999

10

• 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

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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, cant wait very long, they can be
aggressive, they dont dress normally, dont
necessarily take baths, they cant make
appointments, and often dont follow up. So you
have to try to be more tolerant of this sort of
behaviour.
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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

13
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.

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Medicine Wheel
Mental
Emotional
Physical
Spiritual
Community
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Medicine Wheel Values

• Everything is connected
• Balance
• Cycles of change an end is a new beginning
• Life is a journey / healers walk beside us

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Cross-Cultural Medicine

• Culture
• Language, beliefs, history, etc.
• medicine is a product of culture
• Cultural Competence
• understanding your own appreciating your
  patients culture in order to find common ground
  with the goal of meeting your patients health
  agenda

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• 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

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Physical
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Mental
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Emotional
21
Spiritual
22
Community
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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

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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

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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

26
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

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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

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Weaving Relationships Through Storytelling

• where you from?
• Listening to peoples 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

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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)

30
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)

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TAHAH Capacity Buildingwith 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

32
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

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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

34

• 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

35
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
36
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

37
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
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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

39
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

40
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?

41
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

42
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

43
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

44
Visual Ethnography
Life Beyond This
Representations of the DTES community appear
distorted, sensationalist, and pathologizing
Reflecting on urban Aboriginal health, visual
ethnography and experimental methodologies in
community-based research
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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

46
Improving Access to Primary Health Care Lessons
from Two Urban Aboriginal Health Centres

• Research Funded by CIHR

47
Overview of Study

• Context
• This four year study involving two main Phases
• Research partnership between CINHS, VNHS, UBC,
  and UNBC
• Purpose
• 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

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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 peoples lives and
  well-being

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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 2003188
(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 individuals
first initiating HAART. AIDS Research and Therapy
2006, 314Accepted 24 May 2006
50
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 adjusted mortality rate in DTES 40 x
  greater than the rest of BC

30.00
25.00
ASMR
20.00
15.00
10.00
5.00
0.00
Chinatown
DTES
Gastown
Strathcona
Victory
Total 5
LHA 162
BC
Square
community
2001
2002
AREAS
2003
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Baseline Aboriginal to Non-Aboriginal Demographic
Comparison
52
CHCNUP Project

• Quality improvement research project Complete
  HIV Care For Native Urban People (July 2007-
  June 2010)
• The intervention in CHCNUP is the introduction of
  the Chronic Care Model adapted to HIV care for
  inner city Aboriginal non-Aboriginal peoples

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CHCNUP Project Goals

• Reduce HIV related sickness and death
• Evaluate address HIV care inequities for
  Aboriginal people
• (No inequities identified at our centre)
• To assist people living with HIV to live healthy
  and fulfilling lives as defined by themselves

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CHCNUP Clinical Targets
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Drug Dependency
Mental Illness
Unstable Housing
Barriers to HIV Treatment
Misinformation
Hepatitis C Co-infection
Poor access to medical care
Criminal enforcement
Lack of patient education
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CHCNUP Services
SPH 10C Liaison
Clinic RN
Clinic MD
Outreach RN
Intensive Case Management team
HIV Specialist
Person Living with HIV
Pharmacist
Neuro- Ophthalmology
Psychiatry
Ophthalmology
Alcohol Drug Counselling
Dietician
First Nations Squamish Minister/Elder
POP
Mental Health Counselling
Red Fox Active Outreach
Peers
57
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
  Barrios?, David Moore?, Keith Chan, Robert Hogg?,
  Mark Tyndall? (Vancouver Native Health Society,
  ?BC Centre for Excellence in HIV, Vancouver
  Costal Health Authority) 

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CHCNUP Results Continued

• Females with a CD4 lt250 were more likely than
  males to access ART (p 0.046)
• Current Cocaine use associated with lower rate of
  VL suppression (p 0.018)

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CHCNUP Conclusions

• This preliminary analysis indicates that a
  chronic disease management approach to the care
  of HIV in an inner-city population leads to
  improved rates of HIV care engagement and
  antiretroviral treatment success
• Further follow-up and analysis is required to
  establish the final magnitude of these
  improvements and whether or not they translate
  into reductions in mortality and morbidity

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Discussion

• Rates of HIV monitoring, immunizations, disease
  screening, ARV uptake and VL suppression rates
  are below our target levels, but show improving
  trends for those in CHCNUP for gt6 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

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Phasing of Coping with HIV
(1) Shock Loss
(2) Scared Alone
(3) Acceptance Healing

• my life is over
• Emotional shock
• Lack of knowledge
• Abandonment
• Withdrawal
• Loss of community
• Loss of career

• Social isolation
• Fear of infecting others
• Fear of persecution
• Hopelessness

• Acceptance
• Ready to start medications
• Self-healing
• Taking personal responsibility

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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

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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

64
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 UBCs Department
  of Family Practice

BC Centre for excellence in HIV/AIDS
Pfizer
65
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
66
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
67
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
68
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