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Creating a Circle of Care

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Title: 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
8
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)

9
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

11
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.
12
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.

14
Medicine Wheel
Mental
Emotional
Physical
Spiritual
Community
15
Medicine Wheel Values
  • Everything is connected
  • Balance
  • Cycles of change an end is a new beginning
  • Life is a journey / healers walk beside us

16
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

17
  • 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

18
Physical
19
Mental
20
Emotional
21
Spiritual
22
Community
23
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

24
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

25
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

27
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

28
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

29
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)

31
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

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

33
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
38
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
45
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

48
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

49
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
51
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

53
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

54
CHCNUP Clinical Targets
55
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
56
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) 

58
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)

59
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

60
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

61
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

62
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

63
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
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