Text for Figures and Slides in TB Behavioral
and Social Science Research Forum Proceedings
NEIGHBORHOOD HEALTH MESSENGERS: USING LOCAL
KNOWLEDGE, TRUST AND RELATIONSHIPS TO CREATE CULTURALLY EFFECTIVE
TUBERCULOSIS EDUCATION
AND CARE FOR IMMIGRANT AND REFUGEE FAMILIES
Stefan Goldberg, M.D.
Medical Officer
Division of TB Elimination,
Centers for Disease Control and Prevention
Slide #1: Neighborhood Health Messengers
Using local knowledge, trust, and relationships to create culturally
effective TB education and care for immigrant and refugee families
Patrick Chaulk, MD, MPH
Annie E. Casey Foundation
Baltimore City Chest Clinic
Johns Hopkins Schools of Medicine and Public Health
Baltimore, MD
Stefan Goldberg, MD
CDC
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Slide #2: Impact of Immigrants
and refugees on U.S. Culture
- Large influx of immigrants and refugees during the 1990s:
- Increasingly a multi-cultural nation
- Over 300 languages spoken in the U.S.
- Nearly 20% of the U.S. population speaks a language other
than English:
- Spanish speakers increased by 43% between 1990 and 2000
- Over 21 million individuals self-report that they speak English
less than “very well”.
- Virtually all these refugees and immigrants come from countries
endemic with TB
- FB account >50% of all active US cases
- TB is the leading marker for racial health disparities
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Slide #3: Program Performance Measures
Therapy acceptance rates
Treatment completion rates
Referrals for other social services
Seattle’s Cultural Case Management Program:
2,194 immigrants tested 1999 - 2000
442 offered treatment
389 (88%) started on treatment
319 (82%) completed 6-9 month regimen
(vs. 60% nationally, 37% Seattle)
93% of client encounters also involved discussions about housing,
ESL, mental and physical health, employment and employment training,
child care, transportation.
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Slide #4: 1998 Seattle-King County IPT
assessment & epidemiology
- Epidemiology
- 67% of cases foreign-born
- Greatest immigration from Former Soviet Union, Former Yugoslavia,
and Somalia
- Findings
- Continued growth in demand for TB clinic services
- TB clinic move to Harborview Medical Center, site of Community
Housecalls and Ethnomed programs
- Recommendations
- Stop “routine” TB clinic preventive therapy except for
highest risk (ie. “regardless of age” categories and children)
- Develop Cultural Case Management program in partnership
with Community Housecalls
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Slide #5: Cultural Case Management
for Treatment of Latent TB Infection
- Federal and grant-funded partnership with Harborview Medical
Center for “bilingual, bicultural case management.”
- Three major groups of new refugees and immigrants: Somali,
Bosnian, and Russian-Ukrainian.
- All refugees evaluated by the TB Clinic were evaluated in a
custom-designed database January 1999 through June 2001.
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Slide #6: Cultural Case Management
Principles
- Based on experience of Harborview Medical Center’s Community
Housecalls Program
- 2-way communication and support between providers and affected
individuals and communities
- Case Managers - Cultural Mediators (CCM)
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Slide #7: Neighborhood Health Messengers:
"Cultural Case Managers (CCM)"
- Bilingual, bicultural program using local knowledge to create
trust and relationships among immigrants and refugees.
- Extensive community mapping/participatory research approach
- Identify local assets, understand local culture and
practice.
- Recruit and train community residents to:
- Help create effective messages and education strategies
- Serve as TB field workers and case managers
- Conduct extensive neighborhood outreach to:
- Recruit residents for TB testing and therapy
- Assist with clinic visits, home delivery of medications
- Conduct at least monthly house calls; twice-a-week
phone calls;
- Establish social networks; assist with other needs.
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Slide #8: Characteristics of Effective
CCMs
- Knowledge:
- Of refugee language beyond mere translation: refugee cultures,
customs, beliefs, gender roles, family structure. Creates
credible messages.
- Experience:
- With history of effectively serving the target refugee
community. Creates relationships.
- Social standing:
- Highly regarded in the target refugee community: just “being
from the community” is necessary but not sufficient. Creates
trusted messengers.
- Capacity:
- Belief in and ability to explain U.S. medical strategies
and its complex health care system. Creates effective education.
- Therapy acceptance rates (’96-’98 vs. ’99-’00)
- Therapy completion rates (’96-’98 vs. ’99-’01)
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Slide #9: This slide compares therapy
acceptance rates for 1996-1998 and 1999-2000 among three different
foreign-born populations. (n=389, 88%)
Bosnians:
1996-1998 = 54%
1999-2000 = 98%
Somalis:
1996-1998 = 57%
1999-2000 = 92%
Russians:
1996-1998 = 55%
1999-2000 = 76%
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Slide #10: This slide compares
therapy completion rates for 1996-1998 and 1999-2001 among three
different foreign-born populations. (n=319, 82%)
Bosnians:
1996 = 49%
2000 = 95%
Somalis:
1996 = 33%
2000 = 89%
Russians:
1996 = 45%
2000 = 79%
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Slide #11: Elements of Success
- Interviews suggest the success of this program is largely due
to the outreach workers building trusting relationships with their
clients.
- Bilingual, bicultural
- Patient-centered, community-centered approach
- Supporting needs identified by the patient and the community
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Slide #12: Neighborhood Health Messenger
Logic Model: Action steps for improving family and community health
Tasks
Phase I: Initial Start-Up
- Develop planning group of critical partners
- Choose anchor agency
- Community mapping
- Identify/recruit residents
- Peer training for residents
- Consensus on vital issues
- Secure funding
Phase II: Implementation
- Launch door-to-door outreach and education
- Evaluate track
- Connect families
- Advocacy
Phase III: Sustainability
Activities
Getting Started:
- Identify/include critical team members
- Establish regular meetings for planning, ongoing program monitoring
Implementation:
- Develop service menu, educational resources and other benefits
to share as part of door-to-door outreach specific to your community
needs.
- Develop data collection, analysis and reporting systems to evaluate
and monitor program progress
- Obtain data system TA
- Provide periodic reports to partners, funders, and community
members
Make Long Term Connections Between:
- Families and Medical providers
- Families and Resources/Services
- Communities and Health Policymakers
- Communities and Health Systems
Objectives
- Resident leadership
- Social networks
- Communities organized to obtain better services
- Community/public partnerships
- Increased insurance coverage and more educated families and
community
- Families connected to providers
Goal
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Slide #13: Haitian Health Care Alternatives
- Traditional
- Supernatural: Houngan, Mambo Priestess, Mayetizè
(dx illness), Bokò, Christian Catholic Priest
- Natural: Fanm Saj (midwife), Pikirist, Chalatan, Doktè
Zo (bone setter), Docktè Fèy (herbalist)
- Modern Mayetize: Public physicians, Private physicians
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Slide #14: This slide contains two pictures.
The first picture illustrates radio outreach, and the second picture
is of a community focus group.
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Slide #15: This slide contains an example
of an advertisement that reads, “Rete An Sante, Pran Swen
Ko-w: stay healthy, take care of your body. Your doctors care about
you and want you to stay healthy. The pictures on the ad include
health care professionals and patients.
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Slide #16: This slide contains a comparison
of two social network models: traditional TB clinic model versus
a cultural care management model.
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Slide #17: Selected Cultural Findings
From Community Mapping
- TB more stigmatizing than AIDS
- Often viewed as a curse or test from God.
- No framework for “latent infection”
- Treatment without symptoms = experimentation.
- Pharmaceuticals are dangerous
- Not natural products
- Pollutants
- Liquid “safer” than pills
- US medicines appropriate for Americans not them.
- Mistrust of American physicians
- Mistrust/insecurity of American systems especially since
9/11
- Health belief system often complex
- Secular, religious, and mystical or supernatural components
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Slide #18: Selected Cultural Findings
From Community Mapping
- Translated words carry different semantics
- “Negative” versus “Positive” test results.
- PPD reactions are common
- So, in some populations, they are perceived as “normal”.
- Or, are a result of childhood immunization with BCG.
- Bosnian Story
- Interpreter: “don’t trust what they tell you about TB”
- Russian Story
- Initial interpreter telling the wrong things.
- Repeat BCG and PPD till Positive showing protection from
TB
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Slide #19: Selected Cultural Findings
From System Mapping
- “Treating your TB is very important”…but client can’t get a
TB clinic appointment for at least another 2 -3 months.
- Clinic visit sometimes disrespectful.
- Recommendations on the treatment of LTBI inconsistent:
- 12 v. 6. v. 9 months; eligibility age raised from 29 to
50.
- Fear of becoming a focus of research and publicity
- E.g. reporting unfamiliar symptoms (has become a reason
for concealing personal health information.)
- Doctors seem more concerned with saving time than serving clients;
Too busy to spend the time to understand their health concerns;
Lack patience, compassion and care patients expect of them.
- Immigration process misleading: (-) CXR = no TB so:
- “Why am I being screened again when I was screened in Somalia?”
- How could I have TB if I was told I didn’t have it when
I left Somali?
- (+) PPD = prior BCG
- US health care system too confusing
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Slide #20: Other Lessons Learned
- Cultures are not monolithic:
- E.g., nearly 40 tribes in the Sudan w/ war-like histories
- Class and SES distinctions
- Immigrants have many other more important concerns
- Many do not speak English and “interpreters” may speak
on behalf of the health care system not client.
- Illiteracy high: graphics needed for communication/education
- Employment: limited marketable skills.
- Misunderstanding/misinterpretation of some our health care
practices.
- Western male clinicians and immigrant female clients
unacceptable.
- Erosion of traditional male power and roles.
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Slide #21: Replication
- Matapan:
- Community Center for Haitian Education & Research
- San Diego
- Nile Sisters, Horn of Africa, Africa Call
- District of Columbia
- Mary Center For Women & Children
- Denver
- Sisters of Color For Education
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Slide #22: Next Steps
- Complete replication, refine documentation & evaluation
- Influence the field through:
- Local CCM “experts”; replication tool kit
- Dissemination
- Presentations at professional meetings
- National Jewish Medical Center TB Course
- CDC, national, state, local TB control programs
- Publications:
- Clinical results (IJTLD 8(1):1-7)
- Cost effectiveness analysis
- Cultural lessons document
- Peer site exchange in May 2003
- RESULTS.org
- Casey Public Health Fellowship @ CDC
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Slide #23: Final Thoughts
- Costs:
- Goal is to cross train CCMs and thereby cross fund
- Leverage Medicaid and other funding streams
- Replication
- Focusing on the process not the knowledge
- Focus groups are an effective engagement strategy to develop
not just knowledge but trust and relationships
- Go beyond a TB program to broader community building agenda
- Promote the benefits of this strategy
- Refine asset mapping and replication tool kit
- Develop customized technical assistance pool
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