Transcript Slide 1

CHILD AND FAMILY
DISASTER RESEARCH
TRAINING AND EDUCATION
Northwest Center for
Public Health Practice
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Federal Sponsors
NIMH
National Institute of Mental Health
NINR
National Institute of Nursing Research
SAMHSA
Substance Abuse
and
Mental Health Services Administration
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Public Health Practice
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Principal Investigators
Betty Pfefferbaum, MD, JD
University of Oklahoma Health Sciences Center
Alan M. Steinberg, PhD
University of California, Los Angeles
Robert S. Pynoos, MD, MPH
University of California, Los Angeles
John Fairbank, PhD
Duke University
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Culturally Competent Disaster
Services and Research
Russell T. Jones, PhD
James M. Hadder, BS
Tanya L. Sharpe, MSW
Adopted/Adapted & Modified by
Randal Beaton, PhD, EMT
Erin Moran, BS
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Learning Objectives
• After completing this module you will be able to:
• Define “cultural competence”
• Understand the importance of cultural competence in
disaster services/research
• Identify barriers to services/research in
minority/marginalized communities following trauma
• Identify solutions to these barriers
• Discuss cultural competence issues specific to children
• Appreciate cultural issues surrounding disaster trauma for
American Indians
• Understand the steps & components of IRB approval for
research with NW Portland Area American Indian tribes
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What Is Cultural Competency?
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Cultural Competency
• Definition:
• A self awareness of our own biases that allows us to
be culturally humble responders and researchers
• Obtaining knowledge about specific people and
groups of people
• Integrating and transforming this knowledge into
specific standards, policies, practices, and attitudes
• Using these tools to increase the quality of services
and produce better outcomes
Davis, 1997
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Cultural Humility
• Definition
• The cultural humility approach enhances services by
effectively weaving an attitude of learning about
cultural differences into individual encounters.
Additionally, this approach cultivates self-awareness
by encouraging providers to acknowledge the belief
systems and cultural values they bring to individual
and community encounters.
Tervalon & Murray-Garcia, 1998
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Different Levels
of Cultural Competence
0
1
2
3
4
0: Little to no awareness of cultural differences - Approaching each individual
the same way with no regard for culture, ethnicity, and background
1: Awareness of cultural differences, but little variation in the way in which
individuals from different groups are approached
2: Awareness of cultural differences, approaching individuals from different
groups in more culture-specific ways
3: Beginning to take note of individuals’ ethno-cultural environments and take
this into account when modifying the way in which you approach them
4: Taking cultural differences into account when conceptualizing an
intervention/study, forming collaborations, choosing instruments to be
used, approaching individuals in the study in culturally-specific ways, etc.
Norris & Alegria, 2005; Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Thought Question
•
Why must we be culturally competent in disaster
research?
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Necessity of Cultural Competence
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Prevalence of trauma in these groups following
disaster
Greater risk for trauma in these groups
Lack of disaster services/research for ethnic
minorities and marginalized groups
Must be bi-culturally competent in order to
respond and conduct research that spans
across generations, multi-racial and ethnic
heritages
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Prevalence of Trauma in these Groups
Following a Disaster
•
•
Elevated number of traumatic events occurring
within these groups
National Comorbidity Survey and Epidemiologic
Catchment Area Survey data suggesting
elevated levels of psychopathology in ethnic
minority groups
Breslau et al., 1998; Selner-O’Hagan et al., 1998; Holzer & Copeland, 2000
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Greater Risk for Trauma in these Groups
•
Factors predisposing these groups to greater
trauma following disaster:
• Racism
• Discrimination
• Experiences & ongoing exposures
• Other; e.g. historical trauma
Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Lack of Disaster Services and Research
for Ethnic Minorities
and Marginalized Groups
•
•
The epidemiology of PTSD has not yet received
adequate research attention
Specifically, relatively little study given to the
prevalence of PTSD and trauma exposure in
specific groups (e.g., African Americans, Latinos
& American Indians)
Norris & Alegria, 2005; Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Thought Question
• What are the major barriers to providing
culturally competent disaster services/research?
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Major Barriers
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Historical Trauma
Mistrust
Access
Culture and Linguistics
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Historical Trauma
•
Historical trauma that has been
experienced as a result of oppression,
discrimination, and other forms of trauma.
In African Americans this would include
• Slavery
• Unequal Educational & Employment
Opportunities
• Housing – Red-Lining
Alexander, J., Eyerman, R., Giesen, B., Smelser, N., & Sztompka, P., 2001
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Mistrust
•
Minorities have indicated that mistrust is
among the 3 leading reasons why they do
not participate in research
Roberson, 1994
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Mistrust
•
•
Historical relationship between African
Americans and Caucasians within the United
States (i.e., social and medical abuse)
Tuskegee Study (1932-1972)– reminder of the
potential abuses of science. Review @
http://www.cdc.gov/nchstp/od/tuskegee/time.htm
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57% of African Americans are either wary of
scientific research in the United States or
believe that it is currently unethical
Shavers-Hornaday et al., 1997; King, 1992; Million-Underwood, 1993
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Mistrust of Research in American Indians
• American Indians have valid reasons to be
suspicious or mistrustful of research
• The following section highlights some of the
reasons for this mistrust and how this mistrust
and cultural factors may affect disaster research
with American Indians
• This exemplar highlights the importance of
cultural competency in disaster research with
children and families
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History of American Indian Mistrust &
Current Day Protections
• Historical Trauma
– Six Phases of Historical Unresolved Grief
• Federal Government
– Uranium Industry and the Navajo Tribe
• Research
– Indian Health Service and Tribal Institutional Review
Boards
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Caveats and Disclaimers
• Generalizations about American Indians are
inherently suspect since there are 500+
indigenous tribes in the US.
• Research has generally focused on the larger
tribes for which some notable differences have
been documented (Friedman, 1998)
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Caveats and Disclaimers
• American Indians’ culture and ethnicity are not
homogenous
• Inattention to ethnocultural contextual factors
and the meaning of mental distress is common
in the research literature examining disaster
mental health & mental health in American
Indians
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Cataclysmic Events
• These are events or a series of events that are of such a
magnitude, scope and severity that “disaster” is not really
the appropriate term.
• For example: the “Historical Trauma” of American
Indians which occurred over a span of 500 years
resulting in collective emotional injury over life spans &
across generations (Yellow Horse Brave Heart &
DeBruyn, 1998)
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Six Phases of Historical Unresolved Grief
Dr. Maria Yellow Horse Brave Heart
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1st Contact: life shock, genocide, no time for grief.
Economic Competition: sustenance loss
Invasion/War Period: extermination, refugee symptoms
Subjugation/Reservation Period:
confined/translocated
• Boarding School Period: destroyed family system
• Forced Relocation and Termination Period: loss of
governmental system and community
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Historical Trauma of American Indians
• Racism, prejudice, discrimination and health
disparities persist to date.
• Poverty, poor mental and poor physical health
are pervasive on Reservations.
• Acculturation stress can occur when American
Indians are confronted with majority-culture
values and practices - “Bi-cultural Status.”
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Other Examples of Ethnic-based
Cataclysmic Events
• The Holocaust
• Slavery of African Americans
• Internment of Japanese Americans during WW II
Like the American Indian historical trauma,
these cataclysmic events were all human
caused, intentional, systematic, malevolent
acts of unspeakable cruelty.
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Technological Disaster- Case study:
Uranium Industry and the Navajo Tribe
• Psychological effects of a
technological/human-caused disaster—
published case study
(Markstrom & Charley, 2003)
• Environmental racism—intersection of
socioeconomic status, race and people of
color puts certain groups at risk
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Experience of the Navajo & the Uranium
mining and milling industry
• History of Uranium mining
in Four Corners area—commenced in 1948.
• Atomic Energy Commission
was the driver—60 properties
in the Carrizo Mountains were mined
• A total of four uranium mills were built on the
Navajo nation
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Conditions in the Uranium mines/mills
• Estimated numbers of Navajo miners and millers
was 3,000 and 1,000, respectively.
• Work in the mines was hazardous, primitive and
labor intensive.
• PPE and safety measures were not provided or
enforced.
• Ventilation was non-existent
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Health Effects in Uranium Workers
• Uranium miners were 5x more
likely to develop lung cancer
than the general population
photograph © Kerry Richardson
(NIOSH)
 Other respiratory diseases related to
mining/milling operations such as COPD,
pulmonary fibrosis and silicosis also
documented in the Navajo uranium
workers
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Initial Government actions/inactions
• European studies of the dangers of uranium
mining were published in the 1940’s but were
minimized by US.
• In Aug. of 1949 the Public Health Service made a
fateful decision—they decided not to tell the
miners of the dangers of radiation in the mines
for fear of causing “alarm.”
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Govt. actions/inactions (cont)
• Instead, the Public Health
Service undertook an
exculpatory study of
radiation effects on
uranium miners.
 Eventually the casual relationship between
cumulative airborne radiation exposure
and lung cancer was established and
protective legislation was developed.
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Risk Factors for PTSD in American Indians
• Lower SES/poverty- grinding
• Prior or pre-existing mental illness
• Prior trauma exposures
• Type, magnitude and duration of traumatic event
(best predictor of PTSD)
• Other?
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Resiliency Factors in American Indians
• Social support/social integration protect
individuals from the harmful impact of trauma
• Culturally-appropriate forms of healing
• Making sense of the trauma– successful efforts
to find the meaning of the trauma buffer its
effects
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Mother and child
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Research in Tribal Communities and the IRB
•
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Researcher Sensitivity
Researcher Responsibility
Tribal Process
Data Sharing Agreement
*More information available at
http://www.npaihb.org/epicenter/page/irb_institutional_re
view_board_irb/
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Researcher Sensitivity in Tribal
Communities
• Respect Tribal Culture
• Respect and Understand Tribal Sovereignty/Self
Determination
• Exclude over-studied populations from research
• Demystify research
• Respect a Tribe’s right to decline participation
• Respect the autonomy and decisions of the tribe
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Researcher Responsibility in Tribal
Communities
• Communicate and Coordinate with Tribal
leaders
• Obtain proper approvals: service unit director,
tribal, IRB
• Share results of research with the tribal
community
• Protect participant and tribal identity
• Comply with Tribal and IHS publication
clearance
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Process for Research in Tribal Communities
• Find out if Tribe is interested: informal discussion
• Obtain a tribal resolution or tribal letter of
cooperation (tribal council)
• Letter of support from service unit director or
health director
• Create a data sharing agreement
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Data Sharing Agreements
• Investigators will not transfer data to any other
party without formal consent from the tribe
• No secondary analyses are performed on the
data
• Measures are taken to meaningfully inform the
community about the findings of the research
• Tribes have the opportunity to benefit from gains
of the research
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Data Sharing Agreements Cont…
• Tribes have control over when and how the data
is disposed of
• The Tribe have the opportunity to review and
give input on publications and presentations
while in draft form
• NPAIHB Tribal Ownership of Data Resolution
http://www.npaihb.org/images/policy_docs/resolutions/FY05/05-0404%20Tribal%20Ownership%20of%20Data.pdf
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Access to Minority and
Marginalized/Vulnerable Populations
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Practical Issues
Lack of Familiarity with Research
Lack of Resources
Need for Over-sampling
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Access
Practical Issues
•
A number of practical issues must be noted
when working with these groups because of
their socio-economic status, such as:
• Taking time off of work to participate in
services/research
• Finding childcare during participation in
services/research
• Finding transportation to service/research sites
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Access
Lack of Familiarity with Research
•
Members of these communities are often
unfamiliar with research, creating a
number of problems such as:
• Participants being unaware of the nature of
research (i.e., length of questionnaires,
necessity for repeat visits)
• Participants being unaware of the
relevance of research and, thus, being
unwilling to participate
• Participants desiring a direct benefit to
themselves
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Access
Lack of Resources
•
Due to the lack of financial resources that
members of these groups generally face, (i.e.,
no insurance), they may be unable to
participate in services/research or unwilling to
do so (in cases where they suspect a potential
drain on their financial resources)
Institutes of Medicine, 2000
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Access
Need for Oversampling
•
Members of minority and marginalized
communities are, by definition,
underrepresented in the general population
•
•
Thus, the need to “oversample” is paramount
However, this oversampling can burden those
conducting the research with additional expenses
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Culture and Linguistics
Familiarity with Cultures
•
Lack of understanding by researchers/service
providers of:
•
•
•
•
•
Thoughts
Patterns of communication
Customs, values, & norms
Belief systems
Individualistic vs. Collectivistic cultures
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Culture and Linguistics
Language Barriers
•
•
Absence of bilingual mental health workers
results in a lack of psychological services
for members of some groups
Danger of misdiagnoses and poor quality of
treatment when working with populations
that do not speak English or who are LEP
Norris & Alegria, 2005
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Culture and Linguistics
Language Barriers
•
Need for instruments and questionnaires that
are translated into languages other than English
(as well as bilingual service
providers/researchers)
Perilla et al., 2002
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Thought Question
• How can these barriers be overcome in the
pursuit of culturally competent disaster
services/research?
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Overcoming Barriers
Mistrust
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•
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Recognizing the Problem
Establish Meaningful Relationships
Practical Suggestions
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Overcoming Barriers
Mistrust
Meaningful Relationships
•
Members of minority and marginalized groups
will be more likely to participate in
services/research being conducted by those
with whom they have forged meaningful working
relationships PRIOR to the disaster event
Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Overcoming Barriers
Mistrust
Meaningful Relationships
•
•
•
Build on the strengths of pre-established
networks within the target community
Increase target community ownership via a
collaborative partnership between service
providers/researchers and community members
Utilize the diverse array of skills offered from
community partners
Israel, Schulz, Parker, & Becker, 1998
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Overcoming Barriers
Mistrust
Practical Suggestions
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•
•
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Find community gatekeepers and request their
involvement
Build rapport by establishing bonds with
members of the community
Interact with leaders and members of the target
community
Assess and discuss levels of mistrust
Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Overcoming Barriers
Access
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Educational Efforts
Alternative & Practical Incentives
Adapting to Target Group
Characteristics
Community-Oriented Approach
Clearly Addressing Benefits
Utilizing Existing Entities
Practical Suggestions
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Overcoming Barriers
Access
Educational Efforts
•
•
Provide information regarding the process
and relative benefits of the services/research
project at the level of the target group
members’ understanding
Overcoming stigma through explaining the
relative merits and importance of discussing
the disaster and sharing needs and fears
Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Overcoming Barriers
Access
Alternative & Practical Incentives
•
Partnering with indigenous professionals,
paraprofessionals, and community leaders to
provide practical incentives such as daycare and
transportation.
Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Overcoming Barriers
Access
Adapting to Target Group Characteristics
•
•
Recognizing the unique values of the target
group and incorporating these values into the
study design
Inclusion of instruments to tap culturally specific
modes of coping with disasters
Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Overcoming Barriers
Access
Community-Oriented Approach
•
•
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Additional incentives such as: remuneration for
participation, educational opportunities
Multiple pathways through which participants
can gain access
Emphasis on overlapping with the goals of
community members
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Overcoming Barriers
Access
Utilizing Existing Entities
•
•
•
Finding existing culturally sanctioned entities
already existing within the community (e.g., the
Red Cross) and utilizing their assistance to
obtain participants from the target group
Exemplar: Refugees Womens Alliance (ReWA)
in King County Washington– agency that
provides services for refugees and immigrants
Northwest Portland Area Indian Health Board
Jones, Hadder, Carvajal, Chapman, Alexander, 2006
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Children: Specific Issues
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How to reach children of different cultures
Language issues with children of different
cultures
Separation and family reorganization following
disasters
Heightened or lowered capacity of primary
caregiver to tend to the needs of their children
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Children: Specific Issues
How to Reach Children
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Importance of working with schools
Publicizing services through local media
Creation of normalcy
• Structure
• Control & Predictability
• Respect/Rights
Barenbaum, Ruchkin, & Schwab-Stone, 2004; Gordon, Farberow, & Maida, 1999
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Children: Specific Issues
Language Issues
•
Use of interpreters and/or trusted community
organizations to stifle rumors and correct
distorted thoughts
Gordon, Farberow, & Maida, 1999
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Children: Specific Issues
Family Reorganization
•
•
Disasters sometimes force older children to
assume the role and responsibilities of the
family head
Cultural background largely influences how they
will perceive these new responsibilities and
roles
Saylor, 1993
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