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Aida Luz Maisonet Giachello, Ph'D'


Definitions of refugees or immigrants can be vague and are tied to U.S. foreign policy ... Also: religious affiliation, acculturation, migration status, travel ... – PowerPoint PPT presentation

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Title: Aida Luz Maisonet Giachello, Ph'D'


Ethical Issues and Challenges of Partnering with
Recent Immigrant Communities

Aida Luz Maisonet Giachello, Ph.D. Associate
Professor Director May 15, 2009
Improving Health With Communities The Role of
Community Engagement in Clinical and
Translational Research
  • Purpose of Presentation
  • Describe selected characteristics of immigrants
  • Description of Framework for understanding
    ethical challenges
  • Ethical Challenges in studying migrant
  • CBPR Strategies for meaningful community
    partnership and to address ethical issues
  • Strategies Lessons learned

Who are immigrants?
  • Individuals and families who enter US for
    purposes of permanent resettlement.
  • There are three broad categories
  • Voluntary migrants come to join relatives already
    settled in the US or to fill particular jobs for
    which expertise may be lacking among US nationals
  • Refugees and asylum seekers enter the country to
    avoid persecution
  • Undocumented persons enter or stay illegally

Who are Refugees?
  • Persons who experience persecution due to race,
    religion, nationality, or membership in a
    particular social and political group, and who
    is unwilling to avail himself/herself of the
    protection of he/her country (United Nation High
    commissioner for Refugees, 1951, Article 2)
  • Definitions of refugees or immigrants can be
    vague and are tied to U.S. foreign policy

Selected Facts aboutImmigration to the U.S.
  • In 2007, 37.2 million immigrants over age 5 lived
    in the US, constituting about 13.3 of the total
    population (American Community Survey, Table
  • Language use
  • In general, 84.2 of all immigrants speak a
    language other English
  • 52.4 report speaking English
  • less than well
  • 25.4 entered the US in the year 2000 and later
    30.3 between 1990 and 1999, and 44.2 entered
    before 1990

  • New legal immigrants approved for entry into the
    United States is declining, partly because of
    entry restrictions imposed since the events of
    September 11, 2001
  • The number of applications pending continue to
    increase, indicating that many people are still
    seeking to immigrate into the United States


Source US Census, 2000
  • Source US Census, 2000

The Legal Status of Immigrants, 2000
Note Percentages ma not total 100 due to
rounding Source Passet, J. U.S. Immigration
Trends and Issues, 2003.
Ethical Responsibility
  • Ethics involve the responsibilities that
    practitioners have toward their clients/patients
    and to the public in general
  • In the area of research, it refers to the
    responsibility that researchers bear toward those
  • participate in research
  • those who sponsors research
  • and, those who are potential beneficiaries of

Ethical Responsibility..
  • Ethical issues do not exist in a vacuum
  • It exists within the context of a particular
    society and its historical development
  • The efforts in focusing on ethical issues are
    based on major events that have affected racial
    and ethnic minorities and women in the past

Ethical Responsibility..
  • In Chicago, in the 1960s Hispanic/Latino
    immigrant women were sterilized (e.g.,
    tubalization) after delivery a child without
    clear medical reason and without proper consent.
  • It was based on the fact that the OB-GYN though
    that the women already had too many children and
    were living below poverty
  • At that time there were lack of forms in Spanish
    and lack of bilingual staff

Ethical Responsibility..
  • Abuses have led to ethical regulations first in
    medical research and most recently in behavioral
    and social sciences research
  • Despite formal ethical standards for research,
    and establishment of the Institutional Review
    Boards (IRBs) in Universities and other research
    institutions, ethical violations still exist

Ethical Responsibility..
  • Women, racial and ethnic minority populations,
    the poor and immigrant populations are most are
  • Therefore, we need to understand that
  • much behavioral and social science research on
    immigrants and refugees is not morally neutral

Ethical Responsibility.
  • Immigrant policies are hotly debated in our
  • Supporters of immigration policies argue that
    immigrants benefits the country but may need
    special programs to assist them in their
  • Opponents suggest that immigrants drain resources
    that could be spent on other national priorities
  • Source Birman, D. (2006). Ethical considerations
    in research with immigrants and refugee
    populations. In Handbook of ethical research with
    ethnocultural populations and communities. Sage

Ethical Responsibility.
  • Research on the experiences, adaptation and
    social and health disparities of immigrants is
    used and misused to argue both sides of the
  • The use of research places great responsibility
    on the researchers who study these populations
  • Findings from the research studies may be used
    to inform policies that have great impact on the
    lives of people

Ethical Responsibility
  • Defining ethical responsibilities for the
    researchers is a complex when working with
    immigrant and vulnerable populations
  • Researchers need to balance humanitarian concerns
    with scientific rigor
  • Furthermore, balance potential differences in the
    ways ethical behavior is defined by the culture
    of the researcher
  • Diverse cultures with conflicting definitions of
    what is ethical

Ethical Responsibility
  • Informed Consent
  • Refers to telling potential research participants
    about all aspects of the research that might
    reasonably influence their decision to
  • It focuses on an individuals freedom and

Ethical Responsibility
  • Informed Consent must address Aspects of
  • Confidentiality
  • The protection of the identity of potential
    participants when research results are presented
  • Privacy
  • participants ability to control and to determine
    when and under what conditions research staff
    will have access to their beliefs, values,
    behaviors and clinical testing and information

Ethical ResponsibilityInformed Consent..
  • Discourse of research results
  • Researchers must be honest, and must assure that
    the sponsored of the research will not violate
    the ethical principals described above
  • Physical or mental distress or danger
  • If some distress may exist in their participation
    in a given study, researchers must fully inform

Ethical principles to be Followed
  • Veracity
  • Beneficence
  • Non-maleficence
  • Justice
  • Autonomy
  • Fidelity
  • Be truthful
  • Do good
  • Do no harm
  • Distribute goods fairly
  • Indiv free choice
  • Keeping ones word

Ethics are rooted in a core set of values
  • Services
  • Help people in need
  • Social Justice
  • Pursue social change and challenge any social
  • Dignity and Worth of the Person
  • Treat each person in a caring and respectful
  • Promotes socially responsible self-determination

Factors that may place Immigrant Communities at
Risk for Potential Harm in Research
Factors Associated with the Research Process
Factors Associated with Research Funding Sources
Ethical Challenges Community Partnership
Factors Associated with Research Institutions
Factors Associated with Researchers
Characteristics of Recent immigrants
immigrant communities
Ethical Challenges in Studying Immigrants
Related to the Research Process
  • Limited research and population data
  • Difficulties in defining, segmenting and finding
    target populations
  • Immigrant communities experiences serous
    undercount by US census

Ethical Challenges Related to the Research
  • Lack of data makes detailed planning difficult
  • Studies are often based on
  • assumptions
  • observations
  • anecdotal evidence
  • ----? Poor hypotheses and research designs and
    inadequate recruitment planning

Ethical Challenges Related to the Research
  • Problems with sample sizes
  • Samples that include multiple ethnic subgroups
    must have sufficient participants for meaningful
  • Researchers may decide to concentrate on larger
    single immigrant groups or use broader categories
    such as Hispanic/Latino, Asian or black or
    grouped them in existing categories

Challenges to Researchers
  • Inadequate data collection instruments and
  • Not designed nor sensitive to cultural contexts
    or translated
  • Poor translation
  • Poor acculturation measures
  • instruments may be biased along racial/ethnic,
    SES or gender lines
  • Difficult to adapt to populations with low

Challenges to Researchers
  • Differences in reliability validity of survey
    responses across languages and cultural contexts
    instruments may have been fully tested

Ethical Challenges Associated with the
  • Few bilingual/bicultural research team members
  • Limited culturally appropriate strategies in
    recruiting and retaining participants
  • Limited community participation

Ethical Challenges Associated with the
  • Results of a researchers mail survey (n28)
  • 88 of clinical researchers (from academic
    institutions and medical centers) reported that
    with the exception of the media, they have no
    knowledge and skills on how to reach out to
    minorities and women inside and outside their
    institutions (e.g., teaching hospitals)
  • Source Giachello et al 2000

Ethical Challenges Associated with the
  • 90 reported that they have difficulties in
    recruiting minority patients in their own
    institutions due to
  • competition for patients between departments and
  • lack of internal referral systems
  • lack of institutional commitment to serving
    minorities and women, etc.

Ethical Challenges Associated with the
  • 67 of the researchers admitted that the
    inclusion criteria that they develop for patient
    recruitment and enrollment tends to purposely
    exclude minorities and women, etc.

Challenges Associated with Funders
  • Funders at times lack understanding of the
    challenges in working with immigrant populations
    and the resources needed in study immigrants
  • interpreters
  • Translation
  • community health workers (recruitment,
    navigation, retention),
  • Time needed to establish and maintain
  • Develop health literacy appropriate materials

Factors that Place Immigrants at risk for
potential Harm
  • Challenges related to adaptation to the US
    mainstream culture
  • Limited familiarity with US institutions and how
    to navigate these systems
  • Often live in poverty
  • Live in isolation and experience depression

Factors that Place Immigrants at risk for
potential Harm
  • Diversity within groups by
  • Nationality
  • SES
  • Language
  • Culture (values, attitudes, behaviors)
  • Differences in acculturation (recent arrivals
    compared to those immigrants here for several

Factors that Place Immigrants at risk for
potential Harm.
  • Many have difficulties maintaining ties to their
    culture of origin and families
  • Experience ethnic and racial discrimination
  • High mobility within US and between US their
    country of origins

Factors that Place Immigrants at risk for
potential Harm.
  • Distrustful of government entities and research
  • Undocumented persons may shy away from
    participating in research studies for fear of
    being identified by authorities

Factors that Place Immigrants at risk for
potential Harm..
  • . Who Reported YES About Recent Experiences
    Related to Immigration status
  • Have you ever been questioned about your legal
  • 71 of Latino Migrant Farmworkers
  • - 50 of Latino Non-Migrant
  • Farmworkers
  • Source 2008 Illinois Latino Health Study

  • Who Reported YES
  • Fear of deportation by health and social services
    organizations Government entities
  • 35 of Latino Migrant Farmworkers
  • 26 of Latino Non-Migrants
  • Avoid seeking health services due to fear of
    immigration officials
  • 32 of Latino MFW and 22 of Latino

Factors that Place Immigrants at risk for
potential Harm..
  • Low levels of formal education
  • Try to cover up their limitations
  • Limited English Proficiency
  • Do not know how to read or write English
  • Even if they have a HS degree
  • Can lead to exclusion from research
  • Many recent immigrants overestimate their

Factors that Place Immigrants at risk for
potential Harm..
  • Language barriers (LEP)
  • Lack of bilingual and bicultural clinicians,
    research staff, and interpreters
  • Those available may not have the training
    relating to research area and its complexities
    (Example Genetics)
  • Interpreters often are not available, resulting
    in delays and re-scheduling of appointments

Factors that Place Immigrants at risk for
potential Harm..
  • Low comprehension/knowledge about their rights as
    research participants
  • Participants tend to still be confused after
    reading Consent Form
  • Regarding
  • Nature and Consequences of their participation

Source Gotay, 2001
Factors that Place Immigrants at risk for
potential Harm..
  • Communication gaps and problems
  • Researchers and physicians
  • Provide brief descriptions of protocols
  • Use too many technical words
  • Use colloquialisms when they present information
  • May display an attitude of intimidation and
  • May establish distance with the patient, instead
    of fostering trust

Factors that Place Immigrants at risk for
potential Harm..
  • Communication gaps and problems
  • Managed care plans often allocate limited time
    for patient-doctor communication.
  • Could result in poor understanding of a study
  • The anxiety associated with the diagnosis of a
    condition or complication
  • May cloud patient ability to process information
    such as that found in consent processes and forms

Factors that Place Immigrants at risk for
potential Harm..
  • Cultural factors
  • Due to cultural pride, Latinos and others will
    not admit confusion
  • They will not follow the instructions, treatment
    or return
  • Passive attitudes toward authorities

Source Cooper, et al 2004
Factors that Place Immigrants at risk for
potential Harm..
  • Cultural characteristics
  • Physicians and nurses, and anyone who wears a
    white gown are viewed as persons of authority
  • People tend to accept the physician
  • Without questioning or regardless of what the
    consent form may say about risks in participation
    or the potential treatment side effects

Other Factors that make it difficult to study
  • Challenges in inclusion and retention in
    longitudinal studies (need to re-interview or
    follow up participants)
  • Occupation/work status (time priority, schedule)
  • Educational level - scientific/health literacy
    (do not understand the value of research and its
  • Income, Age, gender, household role (parenting).
  • Telephone coverage/continuity (contacting)
  • Household stability/mobility (tracking)
  • Also religious affiliation, acculturation,
    migration status, travel

Factors that Place Immigrants at risk for
potential Harm..
  • Barriers to access to health care
  • Least likely to
  • Have a medical home
  • Have health insurance
  • Have preventive screening
  • Younger immigrants may have lower medical needs
  • Others use health services less and later in
    disease development

2008 Latino Health Survey
who could not afford Medical Care in the past
year in the last year,
Lessons learned
  • I will argue that the best way to study immigrant
    communities is by establishing meaningful
    partnerships with immigrant communities

Phase I Participatory Action Research
Coalition Building Model
Giachello, 2003)
Community Entry interviews
Partnership Formation
Capacity- Building (Training)
Assessment, Data Collection Analysis
Dissemination of findings Community Consultation
Finalize ACTION PLAN (logic Model)
Values Goals Objectives
Community Dialogue
Ethical/ IRB training\
Telephone Survey
Community Forums/Town Meetings
Research Topic
Focus Groups
Problem Definition
Establishing Groups norms
Formations of Committees
Strengths Limitations
Resources Needed
Analyses of Epidemiological Data
Community engagement
Project Community Group
APPLIED Research Methods
Resource Survey Community. mapping
Community Organizing
UIC Phase II Participatory Intervention
Evaluation Planning (GIACHELLO, 2005)

Coalition Reorganization
Coalition Focus (Action Planning)
Capacity- Building (Training)
Program Planning Evaluation
Capacity Building
Expansion of partnership
Computer literacy Ethics (consent) Field
Coalition Effectiveness Survey
Reorganization of Staff
Quality care Improvement
Topic areas
Centralized Data System
Strengthening (on-going)
Setting Priorities
Pilot Testing interventions (e.g., curriculum)
Community Awareness Education
Specific Interventions
Other training
Reorganization of Committees
Developing An Operational Plan to Implement Eval
Community Organizing
Getting Started in working with immigrant
  • Assess your level of readiness
  • Why do you want to study/include immigrant
  • Is it funding opportunities?
  • Is it to meet funding requirement?
  • Is it due to institutional or community
  • A sense of social justice?

Getting Started .
  • Assess levels of readiness
  • Do you have previous experience or history of
    working with immigrant populations?
  • Do you have the time to initiate and sustain the
  • How is your institution viewed by the community
    and its gatekeepers?
  • For example, are ethnic clinicians afraid you
    will take away their patients?

Getting Started..
  • Assess levels of readiness
  • Do you or people in your institution have the
    necessary skills?
  • Communication and language skills
  • Cultural proficiency, competency and cultural
    humility (commitment to self-evaluation and
  • Ability to share power and control over decisions
  • Group facilitation and interpersonal skills

Getting started..
  • Become familiar with the immigrants
  • Demographics (Age structure may determine
    recruitment outcomes, prevalence of conditions)
  • Their immigration history and cohorts
  • Epidemiological patterns and their determinants
  • Geographical concentration and mobility
  • Community institutions (places of worship, CBOs,
    sport clubs, schools)

Getting StartedAssessing immigrant populations
  • Immigration motives and experience (traumas)
  • Acculturation levels
  • Language skills (LEP)
  • Literacy/education
  • Urban/rural/suburban
  • Religion/spirituality
  • Family/household structure
  • Family networks
  • Family leadership
  • Community participation
  • Experience with health providers and systems
  • Use of indigenous alternative healers

Lessons Learned From CBPAR with Immigrant
  • Engage the community in the entire research
    process (grant application phase through the
  • Define the community
  • Identify the stakeholders. Develop an inventory
    of potential partners.
  • Inquire What individuals and organizations have
    influence and/or are directly or indirectly
    affected by the problem?

Lessons Learned
  • Assess community strengths, assets, and needs
  • Connect with community gatekeepers
  • Conduct interviews with opinion leaders
  • Conduct interview with Opinion leaders
  • Form a planning committee
  • Conduct a community meeting

Lessons Learned.. Apply Principles of CBPR
(Israel, et al)
  • Community is treated as a unit of identity
  • Builds on strengths and resources within
  • Facilitates collaborative, equitable partnerships
    in all phases of research
  • Promotes co-learning and capacity-building

Source Israel, B. et. A. (Critical issues in
developing and following community based
participatory research principles. In CBPR for
Health (Minkler and Wallerstein)
Principles of CBPR (Israel, et al)
  • 5. Integrates knowledge and action
  • 6. Emphasizes local relevance and multiple
    determinants of health
  • 7. Implements an iterative process
    build-flexibilityresearch should plan for more
    time, and resources

Source Israel, B. et. A. (Critical issues in
developing and following community based
participatory research principles. In CBPR for
Health (Minkler and Wallerstein) , 2005
Lessons Learned
  • 8 Disseminates findings and knowledge be careful
    in identifying communities by name or groups
  • 9. Involves a long-term process and commitment
  • What happens after funding ends? Depends on
    capacity-building (leadership development
    proposal writing skills and where there may be

Lessons Learned from CBPR with recent immigrant
  • Immigrant communities are heterogeneous
  • Locating and integrating into this community
    takes time
  • Try to understand the local dynamics by
  • Identifying existing networks
  • Recent arrivals use word of mouth of fellow
    immigrants as health information

Martinez IL, Carter-Pokras O, Brown PB.
Addressing the Challenges of Latino Health
Research Community-based approaches in an
emergent urban community. Journal of the National
Medical Association (In PressExpected September
Lessons Learned using CBPR with recent immigrant
  • Consider the positive impact of immigrants on
    local communities, economies, labor,
  • Identifying community-based organizations that
    have served earlier waves of immigrants
  • Build on existing networks of immigrant
    providers, advocates, and community members
  • Identify issues of concerns to immigrant such as
    legal status, discrimination, and access to
  • Building TRUST is crucial
  • Be aware of the demand on your time Community
    hours vs. University hours
  • Challenges of working in groups

Martinez IL, Carter-Pokras O, Brown PB.
Addressing the Challenges of Latino Health
Research Community-based approaches in an
emergent urban community. Journal of the National
Medical Association (In PressExpected September
Lessons Learned from CBPR with recent immigrant
  • Promotes co-learning and capacity-building
  • Special skills required to work with communities
  • Interaction with community
  • Beyond the confines of the University
  • Build research skills among community members
  • They can conduct interviews, focus groups,

Martinez IL, Carter-Pokras O, Brown PB.
Addressing the Challenges of Latino Health
Research Community-based approaches in an
emergent urban community. Journal of the National
Medical Association (In PressExpected September
Lessons Learned from CBPR with recent immigrant
  • CPAR process can be adapted to engage community
    partners in examining evidence based research and
    what works with the investigators in deciding
    what programs

Lessons Learned in addressing ethical issues
with Community Partners
  • Establish Community Advisory Boards with
    meaningful input in the research design and
    consent process
  • Build Trust
  • In some recruitment ads, the word research is not
    mentioned. Research as a concept does not even
    translate well into some languages or have
    meaning for persons with low literacy.
  • Many people who volunteer in the hope of getting
    a new treatment end up receiving a placeboa
    treatment such as a sugar pill, that has no
    medical effect.

Lessons Learned..
  • Be clear on what you are asking from participants
    in the Consent Form
  • Use verbal and written informed consent
  • Use simple terms and visuals, if possible
  • Use videos to inform participants
  • Involve family and significant others based on
    cultural and personal privacy preferences
  • Community Representatives can review and simplify
    the language, help with translation, etc
  • Have clear tasks and timelines up front for them,
    and incentives or recognition for their work

Lessons Learned
  • In the Consent Form
  • Address Confidentiality issues
  • The protection of the identity of potential
    participants when research results are presented.
  • do not ask legal status, do not ask for social
    security number
  • Addressing Privacy issues
  • Participants ability to control and to determine
    when and under what conditions research staff
    will have access to
  • Minimize coercion
  • Avoid interviews with other members of the family
    or friends being present
  • Be sensitive to secrecy

Lessons Learned.
  • In the Consent Form
  • Translate materials with members of the target
  • Use trained bilingual/bicultural community staff
    and interviewers to develop, review and translate
    Informed Consent

Lessons learned
  • Autonomy(individuals free choice)
  • Preparation of recruitment materials
  • Should have clear and accurate information
  • Selection of participants
  • Interview people away from areas where violation
    of privacy or confidentiality may occur
  • Compensation vs. coercion
  • Provide fair compensation for time and efforts,
    but not excessive to minimize coercion

Lessons Learned
  • Assure confidentiality protection of the
  • Train community interviewers and ask them to
  • Sign confidentiality agreements and do IRB
    training as condition of employment
  • Assure that they can remain in the project during
    its duration

Lessons Learned.
  • In focus groups, when information is on sensitive
  • Obtain verbal consent
  • Use nicknames
  • Make sure that other identifiable information is
    secured and destroyed right after the data is

Lessons Learned.
  • In focus groups consent form is
  • Read out loud, and
  • Additional staff should be available to assist
    individuals in fill out forms
  • (e.g, Participant surveys or profiles, etc.)

Lessons learned
  • Decision to participate in studies may be subject
  • What people hear or read in the media
  • We must educate the media, especially the ethnic
  • Influence of primary care physicians and family
  • We must take time to educate physicians and
    other clinical staff

Lessons learned
  • Address issues of Justice
  • Distribute benefits and burdens of research
    fairly among individuals, populations and in
    society at large
  • Work with community partners to develop referral
    systems to address financial and institutional
    barriers to access to health care
  • Assist your research institutions to include
    community representatives in the IRBs process

Lessons Learned
  • Develop realistic and feasible research plan
  • It usually takes a lot more time and resources
    that projected
  • We have to make sure that the research has some
    immediate applicability for the community

  • It is critical to increase participation of
    immigrants in research
  • Get to know the immigrant population
  • Use CBPAR to address the ethical challenges
  • Take time to develop and sustain community
  • Apply linguistic, cultural and health literacy
    approaches in all efforts

  • Draw on the experiences of the members of the
    target group to provide cultural perspectives
    and expertise to the research project (e.g.,
    knowledge, beliefs and practices, preferred
    sources of information)
  • Develop community resources to support research
    efforts (e.g., recruitment, access to local
    media, in-kind support for activities)

  • Hiring and training recruiters and staff members
    indigenous to the population such as community
    health workers, front desk staff, and other
  • Involve the community in the design and testing
    of materials through qualitative methods
  • Assure that these materials represent target
    population/audience or its preferences in the

  • Conduct cognitive testing for comprehension and
    readability of materials and translations
  • Framed messages to the audiences cultural
    values, beliefs and practices of the target
  • Sample sizes, messages, and recruitment plans
    should be based on epidemiological and other
  • During analysis and dissemination, provide
    ethnic-specific data, but limit comparisons to
    dominant or better off groups