Title: Aida Luz Maisonet Giachello, Ph.D.
1 Ethical Issues and Challenges of Partnering with
Recent Immigrant Communities
Aida Luz Maisonet Giachello, Ph.D. Associate
Professor Director aida_at_uic.edu May 15, 2009
Improving Health With Communities The Role of
Community Engagement in Clinical and
Translational Research
2- Purpose of Presentation
- Describe selected characteristics of immigrants
- Description of Framework for understanding
ethical challenges - Ethical Challenges in studying migrant
communities - CBPR Strategies for meaningful community
partnership and to address ethical issues - Strategies Lessons learned
3Who 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
4Who 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
5Selected 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
S0506) - 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
6- 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
7 Source US Census, 2000
8 9The Legal Status of Immigrants, 2000
Note Percentages ma not total 100 due to
rounding Source Passet, J. U.S. Immigration
Trends and Issues, 2003.
10Ethical 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
who - participate in research
- those who sponsors research
- and, those who are potential beneficiaries of
research
11Ethical 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
century
12Ethical 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
13Ethical 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
14Ethical Responsibility..
- Women, racial and ethnic minority populations,
the poor and immigrant populations are most are
risk - Therefore, we need to understand that
- much behavioral and social science research on
immigrants and refugees is not morally neutral
15Ethical Responsibility.
- Immigrant policies are hotly debated in our
society - Supporters of immigration policies argue that
immigrants benefits the country but may need
special programs to assist them in their
adjustment - 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
16Ethical Responsibility.
- Research on the experiences, adaptation and
social and health disparities of immigrants is
used and misused to argue both sides of the
debate - 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
17Ethical 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
18Ethical Responsibility
- Informed Consent
- Refers to telling potential research participants
about all aspects of the research that might
reasonably influence their decision to
participate - It focuses on an individuals freedom and
self-determination
19Ethical 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
20Ethical 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
participants
21Ethical 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
22Ethics are rooted in a core set of values
- Services
- Help people in need
- Social Justice
- Pursue social change and challenge any social
injustice
- Dignity and Worth of the Person
- Treat each person in a caring and respectful
fashion - Promotes socially responsible self-determination
23FIGURE 1
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
building
Factors Associated with Research Institutions
Factors Associated with Researchers
Characteristics of Recent immigrants
immigrant communities
24Ethical 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
25Ethical Challenges Related to the Research
Process
- 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
26Ethical Challenges Related to the Research
Process
- Problems with sample sizes
- Samples that include multiple ethnic subgroups
must have sufficient participants for meaningful
analyses - 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
27Challenges to Researchers
- Inadequate data collection instruments and
measures - 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
literacy
28Challenges to Researchers
- Differences in reliability validity of survey
responses across languages and cultural contexts
instruments may have been fully tested
29Ethical Challenges Associated with the
Researchers
- Few bilingual/bicultural research team members
- Limited culturally appropriate strategies in
recruiting and retaining participants - Limited community participation
30Ethical Challenges Associated with the
Researchers..
- 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
31Ethical Challenges Associated with the
Researchers..
- 90 reported that they have difficulties in
recruiting minority patients in their own
institutions due to - competition for patients between departments and
units - lack of internal referral systems
- lack of institutional commitment to serving
minorities and women, etc.
32Ethical Challenges Associated with the
Researchers..
- 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.
33Challenges 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
partnerships - Develop health literacy appropriate materials
34Factors 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
35Factors 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
years)
36Factors 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
37Factors that Place Immigrants at risk for
potential Harm.
- Distrustful of government entities and research
Institutions - Undocumented persons may shy away from
participating in research studies for fear of
being identified by authorities
38Factors 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
status - 71 of Latino Migrant Farmworkers
- - 50 of Latino Non-Migrant
- Farmworkers
- Source 2008 Illinois Latino Health Study
39- 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
Non-M.
40Factors 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
proficiency
41Factors 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
42Factors 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
43Factors 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
superiority - May establish distance with the patient, instead
of fostering trust
44Factors 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
referral - 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
45Factors 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
46Factors 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
recommendations - Without questioning or regardless of what the
consent form may say about risks in participation
or the potential treatment side effects
47Other 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
benefits) - Income, Age, gender, household role (parenting).
- Telephone coverage/continuity (contacting)
- Household stability/mobility (tracking)
- Also religious affiliation, acculturation,
migration status, travel
48Factors 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
492008 Latino Health Survey
who could not afford Medical Care in the past
year in the last year,
50Lessons learned
- I will argue that the best way to study immigrant
communities is by establishing meaningful
partnerships with immigrant communities
51 Phase I Participatory Action Research
Coalition Building Model
1
2
3
4
Giachello, 2003)
6
Community Entry interviews
Partnership Formation
Capacity- Building (Training)
Assessment, Data Collection Analysis
Dissemination of findings Community Consultation
Finalize ACTION PLAN (logic Model)
Process
Values Goals Objectives
Community Dialogue
Orientation
Ethical/ IRB training\
Telephone Survey
Community Forums/Town Meetings
Activities
Strategies
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
Evaluation
Resource Survey Community. mapping
Community Organizing
On-Going
52UIC Phase II Participatory Intervention
Evaluation Planning (GIACHELLO, 2005)
1
2
3
4
5
6
Coalition Reorganization
Coalition Focus (Action Planning)
Capacity- Building (Training)
Program Planning Evaluation
Implementation
Committees
Process
Capacity Building
Expansion of partnership
Retreat
Computer literacy Ethics (consent) Field
evaluation
Coalition Effectiveness Survey
Reorganization of Staff
Activities
Quality care Improvement
Topic areas
Centralized Data System
Strengthening (on-going)
Setting Priorities
Pilot Testing interventions (e.g., curriculum)
Policy
Community Awareness Education
Specific Interventions
Other training
Reorganization of Committees
Evaluation
Developing An Operational Plan to Implement Eval
Protocols
Community Organizing
On-Going
53Getting Started in working with immigrant
populations
- Assess your level of readiness
- Why do you want to study/include immigrant
communities? - Is it funding opportunities?
- Is it to meet funding requirement?
- Is it due to institutional or community
pressures? - A sense of social justice?
54Getting 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
partnership? - How is your institution viewed by the community
and its gatekeepers? - For example, are ethnic clinicians afraid you
will take away their patients?
55Getting 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
self-critique) - Ability to share power and control over decisions
- Group facilitation and interpersonal skills
56Getting 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)
57Getting 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
58Lessons Learned From CBPAR with Immigrant
Communities
- Engage the community in the entire research
process (grant application phase through the
study) - 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?
59Lessons 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
-
60Lessons Learned.. Apply Principles of CBPR
(Israel, et al)
- Community is treated as a unit of identity
- Builds on strengths and resources within
communities - 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)
61Principles 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
62Lessons 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
funding
63Lessons Learned from CBPR with recent immigrant
communities
- 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
2009)
64Lessons Learned using CBPR with recent immigrant
communities
- Consider the positive impact of immigrants on
local communities, economies, labor,
entrepreneurship - 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
resources - 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
2009)
65Lessons Learned from CBPR with recent immigrant
communities
- 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
2009)
66Lessons Learned from CBPR with recent immigrant
communities
- CPAR process can be adapted to engage community
partners in examining evidence based research and
what works with the investigators in deciding
what programs
67Lessons 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.
68Lessons 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
69Lessons 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
70Lessons Learned.
- In the Consent Form
- Translate materials with members of the target
communities - Use trained bilingual/bicultural community staff
and interviewers to develop, review and translate
Informed Consent
71Lessons 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
72Lessons Learned
- Assure confidentiality protection of the
information - 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
73Lessons Learned.
- In focus groups, when information is on sensitive
matters - Obtain verbal consent
- Use nicknames
- Make sure that other identifiable information is
secured and destroyed right after the data is
processed
74Lessons 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.)
75Lessons learned
- Decision to participate in studies may be subject
to - What people hear or read in the media
- We must educate the media, especially the ethnic
media - Influence of primary care physicians and family
members - We must take time to educate physicians and
other clinical staff
76Lessons 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
77Lessons 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
78Conclusions
- It is critical to increase participation of
immigrants in research - Get to know the immigrant population
- Use CBPAR to address the ethical challenges
involved - Take time to develop and sustain community
partnerships - Apply linguistic, cultural and health literacy
approaches in all efforts
79Conclusions
- 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)
80Conclusions
- Hiring and training recruiters and staff members
indigenous to the population such as community
health workers, front desk staff, and other
paraprofessionals - 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
materials
81Conclusions
- Conduct cognitive testing for comprehension and
readability of materials and translations - Framed messages to the audiences cultural
values, beliefs and practices of the target
population - Sample sizes, messages, and recruitment plans
should be based on epidemiological and other
data. - During analysis and dissemination, provide
ethnic-specific data, but limit comparisons to
dominant or better off groups