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Tuberculosis at an Adult Education Center: A CBPR Approach

Julie Nigon, Hawthorne Education Center

Mark Wieland, Mayo Clinic

Rochester, MN, USA

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Objectives

• Describe a CBPR partnership

• Describe a CBPR project

• Describe lessons learned

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Rochester Healthy Community Partnership (RHCP)

• Started in 2005 between Hawthorne Education Center and Mayo Clinic

• Initial health concern/research topic:

Tuberculosis at Hawthorne

• Adopted CBPR principles and operating norms

• Grown in membership

• Productive and experienced in assessment and intervention with immigrant and refugee communities across several health topics

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Engagement

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Rochester Healthy Community Partnership (RHCP)

• Mission: Promote health and well-being among the Rochester population through

-community-based participatory research,

-education, and

-civic engagement

to achieve health equity

Community Partners

•Hawthorne Education Center

•Multicultural Learning Center (Somali community)

•Cambodian Church of the Nazarene

•Alliance of Chicanos, Hispanics, and Latin Americans

•New Sudan American Hope/Church of St. Johns

•Vision Church

•Intercultural Mutual Assistance Association

•Rochester Area Family YMCA

Academic Partners

•Mayo Clinic

•Olmsted Medical Center

•Winona State University

•University of Minnesota, Rochester

Rochester Healthy

Community Partnership

(RHCP)

www.rochesterhealthy.org

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Let’s Talk about TB

• Olmsted County with high TB incidence; almost all cases among foreign-born

• Most passed through Hawthorne

• Significant disruption to school

• Hawthorne engaged Mayo Clinic researchers to study the problem and act together

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Hawthorne Education Center

• Rochester Adult and Family Literacy

• 2,000 adult learners from Sub-Saharan Africa, Latin America, Southeast Asia and Southeast Minnesota

• 70 different languages spoken at home

• 85% live below federal poverty level

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Let’s Talk about TB

• Initial research questions

•What are the community’s perceptions about TB?

•What are perceived barriers to health seeking behaviors for TB?

•What the community’s recommendations to reduce these barriers?

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Let’s Talk about TB

• Qualitative research approach

• Theoretical Framework

-Health Beliefs Model

-Perceived susceptibility

-Perceived severity

-Perceived barriers

-Perceived benefits

• Instruments

-Focus groups

-Unstructured interviews

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Building a Community-Based Qualitative Research Infrastructure

• 28 community members and academics recruited for focus groups training

• 24 hours of training

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Focus Groups Recruitment

• Project introduced in the classrooms by teachers

• Sign-up sheets

• Final groups decided by Hawthorne program manager to reflect demographics of the school

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Focus groups

• Questions written by RHCP focus groups team.

• Moderated by trained community members.

• Food provided

• Gift cards for participants

• Focus groups and triangulation digitally recorded, transcribed, translated, verified

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Data Analysis

• Analysis sub-committee formed

• Initial coding of all 10 transcripts by 3 members

-NVivo-8 software

-Coding discrepancies examined, discussed, and consensus derived

• Model of focus groups results

-Informed by consensus coding

-Conveyed by themes

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Data Analysis:Validation of Results Model

• Model debated and revised among contingencies

-Analysis sub-committee

-Focus groups facilitators

-RHCP project advisory board

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Results

Region of Birth FG’s with Learners (6)

FG’s with Staff (4)

Totals

Africa1 22 6 28

Asia2 11 4 15

Eastern Europe3 12 0 12

Latin America4 9 0 9

United States 0 19 9

Totals 54 29 83

1Somalia and Sudan2Vietnam, Cambodia, Laos, China, Pakistan3Ukraine, Russia, Turkey4Mexico, Columbia, Puerto Rico

Wieland ML, et al. Journal of Immigrant & Minority Health Sep 19, 2010; epub ahead of print.

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Results

3028272B-1

TB is STD

Food

TB is like lung cancer

Blood

Drink and smoke

Water

Touch

Nutrition prevents TB

Cleanliness prevents TB

Sun protection

Air quality

How TB is

contracted

How TB is

prevented

Practical

considerations

Generic

medicine

Side

effects

Access to

medication

Cost of

medication

TB is low

profile

I’m not

sick

Active vs

latent

Cost of testing

Have to miss work

Transportation

Takes too much time

Cumbersome system

TB is not in

the USA

Suspicion

Secrecy

Fear

Shame

Discrimination

Isolation

Challenges facing TB

control

Misconceptions

about TB

Negative

feelings and

perceptions

Barriers to

medication

Barriers to

testing

Wieland ML, et al. Journal of Immigrant & Minority Health Sep 19, 2010; epub ahead of print.

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TB Focus Groups at HawthorneFocus Group Results

(TB Perceptions)

Practice Implications

(Cues to Action)

Perceived

susceptibility

Misperceptions about TB

transmission

Re-enforce modes of

transmission

Perceived

severity

TB is incurable Reassure that TB is curable

Perceived

barriers to

prevention &

treatment

-Feelings of fear, secrecy, shame,

isolation, discrimination, punishment

-Lack of knowledge about latent TB

-Lack of awareness

-Recognize and reflect

perceptions and feelings

about TB

-Educate about latent TB

-Raise awareness that TB

does exist in the US

Perceived

benefits of

prevention &

treatment

Very little perceived benefit, largely

due to lack of knowledge about

latent TB and its relationship to

illness

Educate about latent TB and

implications of eradication for

personal and community

health

Wieland ML, et al. Journal of Immigrant & Minority Health Sep 19, 2010; epub ahead of print.

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Dissemination

• World TB Day at Hawthorne Education Center

• Over 900 learners!

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Interventions

• TB education video

• TB testing on site

• Referral for further evaluation and treatment

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TB Education Video

• Addresses barriers identified in focus groups

• Script written by Hawthorne students and staff

• Filmed at Hawthorne with students

• Evaluated with 196 learners

•Highly acceptable

•Improved knowledge

•Improved self-efficacy

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TB Prevalence Project

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Results of TB Skin Tests Among Learners at Hawthorne

Demographic N (%) TB Test Positive TB Test Negative p-value

Region of Birth 0.0023

Africa 96 (36.8%) 31 65

Latin America 71 (29.2%) 11 60

Asia 50 (19.2%) 7 43

United States 21 (8%) 0 21

Middle East 20 (7.7%) 1 19

Europe 2 (0.8%) 0 2

Oceana 1 (0.4%) 0 1

Years Lived in U.S. 0.2539

≤2 84 (37.2%) 14 70

3-5 69 (30.5%) 14 55

≥5 73 (32.3%) 20 53

Overall 259 48 211

Wieland, et al. American Journal of Public Health 2011; In Press.

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Policy Change and Sustainability

• Free TB skin tests now offered quarterly at Hawthorne for learners and staff

-Coordination between Hawthorne and Public Health Department

-Occur in the context of sustainable TB education

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Outcomes

• Described perceptions of TB and its prevention among recent immigrants and refugees in Rochester.

• Described prevalence of TB and an effective process for screening at an adult education center.

• Produced and evaluated a TB education video for learners with low health literacy.

• Changed TB screening practice and procedures for at-risk population.

Funding: National Institutes of Health (NIAID) & Mayo Clinic CTSA

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Lessons Learned

• Have to be in it for the long term

• Sustainability plan from the beginning

• Develop mechanisms for triaging “bumps in the road”

• Expect the unexpected

• Always keep mind open to learning from each other

• CBPR is a strengths model, not a deficit model

• CBPR is not just an approach, it’s an attitude

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Questions?