RSS 75th Annual MeetingDiversity Gathering Room

Community Research with Rural Hispanics in Southern Illinois: Issues, Approaches and Challenges Panel – Cathy Bless- Shawnee Health Services Aurelia Zaragoza Southern Illinois Hispanic Ministry Ben Mueller Avicenna Community Health Center

Panel Overview: Telling our Story

• Background of the Panelists• Roles we have played using the

Community Participatory Research Approach– Partnership Building– Assessment and data collection– Problems/Issues Identification– Program development and

implementation– Evaluation and Dissemination

• Questions and Discussion

Before we get started: Rationale for CBPAR and its Linkages to Local Solutions

to Inequality• My CBPAR Research grounded in Human Rights and Social

Justice perspectives– Undocumented Hispanic Immigrant population– Uninsured and underinsured families with health disparities– Rebuilding a local safety net for at risk families with Free

Clinics• Faith-based free clinics• FQHCs and community healthcare partnerships

• My Discipline Expertise – Community Health research and outreach– Rural Community and Economic Development – Multi-media Studies

A Social Justice Perspective as it relates to Health

Disparities• Health Disparity/Equity Frameworks (NIH

2002; DHHS 2000; WHO 1986)

• Equity in health is the absence of systematic disparities in health (or in the major social determinants of health) between groups with different levels of underlying social advantage/disadvantage (e.g. wealth, power, prestige) – Starfield, 2000

Community, Evaluation and Dissemination Research: Frameworks, Models and

Approaches: Health Disparities Research

• Vulnerability Model (Shi and Stevens, 2005)

• CBPAR approach (Israel 2003; Fals-Borda 1987; Freire 1982)

• Evidence based practice approach (Brownson 1999; CDC 2001)

• Practice based evidence approach (Green, 2007)

Community Research Strategic Objectives

– …to address health disparity and promote health equity…

• Identify and engage community partners in the joint conduct of in health-related research to reduce health and health care disparities using evidence-based disease prevention and intervention activities in rural underserved communities in Illinois

• Implement and evaluate a practice based evidence model of community research using a participatory approach that encourages and equips the community in addressing their own health-related priorities

• Build capacity in the community to create and deliver health information that is culturally sensitive and appropriate to needs of rural and underserved populations

• Enhance the abilities of community members and health providers to identify and resolve health and health care disparities

What is Health Disparity?• Differences in the incidence, prevalence, mortality and

burden of diseases and other adverse health conditions and health states that exist among specific population groups (NIH, 2000)

• Disparity manifests as shorter life expectancy and higher rates of CVD, cancer, infant mortality, birth defects, diabetes, stroke, STD’s and mental illness among others

• Disparity among population groups is also evident at the health care delivery system level, in differential rates of access and use of services

Types of Health Disparities

• Health Status AND/OR Health Outcomes

• Individual personal factors – biological/genetic, sociodemographic, socioeconomic, disabilities, residency, cultural norms and values, literacy levels, familial influences, environmental/occupational exposures

• Societal/System factors– Social resource distribution, social and political advantages such as knowledge and social connections, insurance status, transportation/geography, distribution of health resources (clinics, health professionals training and approaches or patterns in providing care)

Social Justice Linkages: Vulnerability Model

• In rural communities, health disparities in underserved populations have adverse effects on health care institutions, schools and business

• Negative social/economic impacts are related to access/navigational issues in the health care institutions (System)

• Susceptibility to risk factors aligned to cultural background (Individual)

Social Justice Linkages: Vulnerability Model

Vulnerability Model of Perceived Access Barriers for Rural Hispanic Immigrants

Individual and Systems Interaction Model

Individual ModelsHealth insuranceHigh costs of Healthcare servicesCommunicationLegal Status / Documentation and DiscriminationTransportation

Systems ModelsHealth insuranceHigh costs of Healthcare servicesCommunicationLegal Status / Documentation and DiscriminationTransportation

Community Based Participatory Action Research (CBPAR): Historical Foundations

of Social Justice

• PAR– Commitment to social transformation– Origins in Latin America (Fals-Borda, Freire)– Focus on oppressed and underserved

populations

• CBPR– Commitment to evidence-based scientific

rigor– Emphasis on diverse partnership building– Grounding in ecological model of health

Partnership Formation: EXPORT formed Hispanic Health Advisory

Committees

• Formed and supported 10 pilot Hispanic Health Advisory Committees (HHAC) in 14 IL communities

• Stakeholders involved (based on preliminary HHAC evaluation; n=35):• Community Hospitals (5)• State/County Government Org (5)• School Districts (3)• Higher Education Org (12)• Community Foundations (2)• Hispanic CBOs (2) • FBOs (2)

• Non-Hispanic CBOs (1)

• City Officials (1)

• Social Service Org (1)

• State Legislator (1)

• Private Healthcare Providers (1)

• Private Clinics (1)

Assessment Objectives

– Assess rural Illinois Hispanics’ major health concerns in order to identify health disparity issues and help focus prevention efforts

– Disseminate results to Hispanic Health Advisory Committees (HHACs) to inform their local implementation plans; and to rural practitioners to inform their clinical or public health practice

Assessment Phase

• Identify needs and appropriate research questions

– Examine existing data (epidemiological, behavioral, archival, ethnographic, etc) and identify data needs

– Develop exploratory research questions in collaboration with the partnerships

Research Questions

• What are rural Illinois Hispanics’ major…– perceived health concerns?– perceived risk factors?– perceived barriers to access

healthcare?– preferred health education strategies?

Implementation Phase:

– Develop a minigrant proposal based on the findings from the Assessment phase

• Problem description (use of assessment results)

• Partnership description

• Proposed activities

• Budget

• Timeline

• Technical assistance needs

Community Activities

Importance of Evaluation

The whole evaluation process has to lead to self-determination. This means that any evaluation process has to be empowering to the stakeholders/community and give them something that benefits them…something that gives them more knowledge about what is happening in the project, the program and/or the community.

Dissemination Phase:

• Translational Research Framework

• Translation Research characterizes the sequence of events (i.e., process) in which a proven scientific discovery is successfully institutionalized integrated into established practice and policy. Comprised of dissemination research, implementation research and diffusion research. 

• Dissemination Research is the systematic study of how the targeted distribution of information and intervention materials to a specific public health audience can be successfully executed to increase spread of knowledge.

•  • Implementation Research is the systematic study of how a specific set

of activities and designed strategies are used to successfully integrate an evidence-based public health intervention within specific settings.

•  • Diffusion Research is the systematic study of the factors necessary for

successful adoption by stakeholders and the targeted population of an evidence-based intervention which results in widespread use. 

Dissemination Phase: Activities

Dissemination Efforts/Activities Number of

Products Produced

Assessment Reports 840

Flyers: Health Ed/Capacity Building 5,700

Newsletter Articles 1,250

News Releases/Newspaper Articles 18

Resources Guides/Newsletters 3,000

Mass Media (TV and Radio) 6

Community Informational Activities 4

Health Fairs 3

Educational Workshops 37

Some Final Reflections to Communicate: Evidence and PracticePractice and Evidence

• If we want more evidence-based practice, we need more practice-based evidence.

• Recognize the importance of practitioners and other end-users in shaping the research questions.

• Practitioners and their organizations represent the structural links (and barriers) to addressing the important health issues. Engage them.

• Green, LW. From research to “best practices” in other settings and populations. Am J Health Behavior 25:165-178, April-May 2001.

Acknowledgments

• NIH/NCMHD (5 P20 MD000524) – Project EXPORT Center of Excellence in Rural Health

• National Center for Rural Health Professions

• UIC College of Medicine at Rockford

• UI Extension

• Community Health Advisory Committees

Hispanic Hispanic

HealthHealth

AdvisoryAdvisory

CommitteeCommittee

Faith-based Faith-based Partners Partners

United United Methodist Methodist

Church Church CobdenCobden

Catholic Catholic Church Church

CarbondaleCarbondale

The Old The Old School School

CarbondalCarbondalee

Hispanic Community Health Assessment

Bilingual group interviewer and recorder

MethodisMethodist Church t Church CobdenCobden

The Old The Old School, School, CarbondaCarbondaleleCatholic Catholic Church Church CarbondalCarbondalee

Gender separation is an important means of getting Hispanic men and women to open up

Having a “conversation” about health care needs

•participants participants validate validate resultsresults

• HHAC HHAC selects selects 2 problems 2 problems to address to address

DiabetesDiabetes

Lack of Lack of Medical Medical InterpretersInterpreters

Chronic Chronic Respiratory Respiratory IllnessesIllnesses

Sexually Sexually Transmitted Transmitted InfectionsInfections

Dental ProblemsDental Problems

Substance AbuseSubstance Abuse

Researchers present assessment Researchers present assessment results back to the community results back to the community

Mini-grant

NOT EVERY NOT EVERY BILINGUAL BILINGUAL

PERSON CAN BE PERSON CAN BE AN INTERPRETERAN INTERPRETER

Interpreters must…Interpreters must…

• Be fluent in both Be fluent in both languageslanguages

• Follow Code of EthicsFollow Code of Ethics• Be culturally Be culturally

competentcompetent• Be assertiveBe assertive• Understand medical Understand medical

terminologyterminology• Understand systems Understand systems

(hospital, mental (hospital, mental health and health health and health center settings) center settings)

Culture Club celebratesValentine’s Day

When a Man Loves a Woman

A woman with diabetes undergoes a personal

transformation

Glucometers and test strips

Promoting eye care

HEALTH SCREENINGS HEALTH SCREENINGS

HEALTH FAIRSHEALTH FAIRS

Health Fair Crossings Mobile Home

Park

Health Chat• Blood Sugar• Diabetic education and supplies• High Blood Pressure• First Aid• Information, referral and case management

Nutrition Education

Cooking Classes

Hispanic Health Swim

Volleyball for Adults and Teens

Coach Coach Pedro Pedro

InfanteInfante

Child care during the gamesChild care during the games

Black’s Martial Arts Academy

Mexican Martial Arts Team

Hiking in Shawnee National Forest

“Clubs Vida” and the Community Work of Aurelia

Zaragoza, Health Outreach Director

in Cobden, IL

(Prepared by Cathy Bless for Aurelia Zaragoza)

Aurelia organized a summer tutoring program

• Held at her church community center• Focused on students having trouble

in school• Encouraged parents to keep their

kids in school• Worked as coordinator for 6 years as

part of her volunteer work in the community

Action Research Partnership in Southern

IllinoisCobden and Carbondale

worked together to form a Hispanic Health Advisory

Committee

Hispanic Health

Advisory Committee of Cobden

2005

Partnerships

• Southern Illinois Hispanic Ministry, Inc

• Jesus Es El Senor UMC

• Hispanic Health Advisory Committee of Carbondale

• University of Illinois

• Grace United Methodist Church, Carbondale

• Shawnee Health Service, Family Counselor

Implementation: Minigrant• $4,999 minigrant awarded

• Four youth leaders and 5 youth volunteers, ages 17-28, met with the mental health grant coordinator team, reviewed the assessment findings and created the “Clubs Vida” program

• 3 Life Clubs were formed– Club El Cafecito—for seniors 65 or older– Kid’s Club—for 5-12 year olds– Tween Club—for 12-16 year olds

• 2 clubs met weekly and 1 met biweekly during June and July, 2009

Purpose of Clubs Vida Program

Improve mental health by preventing: Loneliness

Depression

Despair

Aggression

“These feelings create persons with social dysfunction that create disunity in the community and increase a sense of isolation. Problems of domestic violence, substance and alcohol abuse are increasing in our communities.”

•Improve mental and physical health by:

•Providing physical and cultural activities for groups that are age appropriate•Promoting social belonging, camaraderie, stability and unity

•Develop and strengthen youth leaders by:

•Involving them in all aspects of the program planning process

Club “El Cafecito”• Ten seniors participated weekly

• Club members took turns hosting at their apartments at the migrant camp or own homes

• Seniors told “their stories”—Oral histories, photos

• Cooking classes

• Out to restaurant X 2

• Traditional meal to celebrate completion of “Club Cafecito Photo and Story Album”

• Field trip—day spa for facials, hairdos, manicures

Kid’s Club

• 30-41 children participated weekly; ½ Hispanic and ½ African American

• Club members resided primarily in or near the Crossings Mobile Home Park in Carbondale

• Most club meetings were held outdoors at “The Crossings”

• Youth leaders organized an outdoor clean-up, painted cemented area, mowed the area and set up open air tents for the weekly activities

• Weekly activities—arts & crafts, family values classes, physical activities, bible stories, etc. inside tents and surrounding area

• Kid’s Fair—41 children attended. – Soccer games, sack races, Frisbee tag– Posters and artwork– Healthy snacks – Prizes

Tween’s Club

• 3 youth leaders and 2 youth volunteer organized the club

• 15 teens participated regularly

• Teens were recruited form the migrant camp and surrounding area; Cobden, Murphysboro and Carbondale (lots are settled out)

• Biweekly field trips—bowling, pizza party, movie and Dairy Queen afterwards, Six Flags in St. Louis

Evaluation

• Three youth leaders, Pastor Adrian and his wife, Lilly and Ben Mueller met with Aurelia, the minigrant coordinator, and 2 other adult leaders and talked about how the clubs went and how to further develop youth leadership.

• Youth leaders words paraphrased:– El Cafecito—It was very important to the seniors

just to have someone to talk to and they greatly looked forward to the weekly program

• Meetings must take place when parents of the grandchildren are not working

• Seniors want to continue the program over the winter for those who are settled out

• Seniors who were not able to travel were willing and took pride in hosting meetings

• Kid’s Club—It was very important to provide transportation for the children

• Hispanic and African American children showed a lot of affection toward youth leaders and invited them to their homes but this was not allowed

• Grace United Methodist Church wants to help maintain the program over the winter; indoor space at the trailer park is being explored

• Tween’s Club—Teens made new friends • It was a safe escape from some risky homes• It helped teens stay away from risky behaviors• At first, 5 teens from the migrant camp were

reclusive but later they came out of their shell and were more sociable

• At the bowling activity club members cheered for members who were loners

• Activities gave teens a break from caregiver activities and allowed them just to be kids

• Youth Leadership—Live what you preach and love and care about others

• When planning, make a vision that tells the purpose of the activity, see what is needed for the activity and solve problems as they come up

• Listen to suggestions and criticisms

• Work to include people who are less involved

• Be a voice for the persons you are trying to help

Dissemination • Pastor Adrian promoted the program during

church, recruited participants, and talked to the congregation about the program during all its phases.

• The program was presented to other congregations; i.e., Aurelia talked to St. Mathews Church, Belleville, IL

• Pastor at Grace United Methodist Church talked with his congregation about the program

•Announcements about the program were printed in:

• “Jesus Es El Senor” church bulletin •Souther Illinois Hispanic Ministries bulletin

Perspectives From Cobden• Benefits:

– Youth leaders participated freely and with great enthusiasm– Kids, teens and elderly participants felt connected to their age cohorts and

community

• Challenges: – Recruiting and retaining club participants– Fronting the money for grant programs

• Next Steps: – Youth are committed to continue to be involved with the Kid’s Club and

Club Cafecito – Recruit new youth leaders – Look for funds to continue high quality social programs– Continue to publicize the success of the program with other churches in the

region

Acknowledgments• Karen Peters, University of Illinois at Chicago

• Benjamin Mueller, University of Illinois at Urbana-Champaign

• Andiara Schwingel, University of Illinois at Urbana-Champaign

• Lisa Beni, Legal Foundation of Chicago

• Administrator, Crossings Mobile Home Park

• Pastor and Youth Pastor of Grace United Methodist Church, Carbondale, IL

• Cathy Bless, President Hispanic Health Advisory Committee of Carbondale

Gracias!

Questions/Comments?