Evaluating Community Capacity Building Using a Participatory Partnership Approach: Lessons From a Co

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Evaluating Community Capacity Building Using a
Participatory Partnership Approach Lessons From
a Collaboration with Rural Latino Communities

• Karen E. Peters, DrPH, Benjamin C. Mueller, MS
• Marcela Garces, MD MSPH, Sergio Cristancho, PhD
• Illinois Prevention Research Center
• School of Pubic Health
• National Center for Rural Health Professions
• College of MedicineRockford
• University of Illinois at Chicago

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Overview

• Background
• Hispanic Health Disparities
• Partnership and CBPAR Approaches
• Evaluation of Capacity Building Efforts
• Partnership profile
• Involvement
• Levels of satisfaction / dissatisfaction
• Dissemination of information
• Community impact and outcomes
• Strengths
• Barriers
• Lessons learned
• Plans for the future

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Hispanics in Illinois

• 1,530,262 Hispanics in Illinois (12.3)
• 1,253,670 Spanish speakers
• 74.8 Mexican
• 11.7 Caribbean
• 2.6 Central American
• 2.5 South American
• 8.4 Other
• 121.5 is the growth rate of Hispanics in
  Illinois between 1990-2000

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Health Disparities in Illinois Behavioral Risk
Factors/Diseases/ Conditions

• Hispanics less likely to have had cholesterol
  checked within last five years (50) compared to
  White (75) or African American (70)
• Hispanics less likely to participate in physical
  activities in past month (59) compared to White
  (77) or African American (70)
• Hispanics more likely to be current smokers (21)
  compared to White (20) or African American
  (16)
• Hispanics less likely to have been told to have
  diabetes by physician (6.5) compared to White
  (6.8) or African American (16.2)
• Hispanics less likely to have been told to have
  high blood pressure by physician (14) compared
  to White (26) or African American (36)
• Source Centers for Disease Control and
  Prevention (CDC). Behavioral Risk Factor
  Surveillance System Survey Data. Atlanta,
  Georgia U.S. Department of Health and Human
  Services, Centers for Disease Control and
  Prevention, 2005

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Community Based Participatory Action Research
(CBPAR)

• PAR
• Commitment to social transformation
• Origins in Latin America
• Focus on oppressed and underserved populations
• CBPR
• Commitment to evidence-based scientific rigor
• Emphasis on diverse partnership building
• Requires resource sharing between academic and
  community partners
• Grounding in ecological model of health

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Some Benefits of Participatory Research in
Practice-Based Evidence

• Results are relevant to interests, circumstances,
  and needs of those who would apply them
• Results are more immediately actionable in local
  situations for people and/or practitioners
• Helps to reframe issues from health behavior of
  individuals to encompass system and structural
  issues.
• Generalizable findings more credible to people,
  practitioners and policy makers elsewhere because
  they were generated in partnership with people
  like themselves
• Green LW, Mercer SL.. Am J Public Health Dec.
  2001

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An Iterative Approach Stages within Phases

• Each Phase (Partnership Formation, Assessment,
  Implementation, Evaluation, Dissemination)
  includes the following Stages
• Exploration
• Approach
• Reflection
• Communication
• Additional Key Ingredients (generally in Approach
  Stage)
• Technical Assistance (Academic partner oriented)
• Capacity Building (Community partner oriented)

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How to use the CBPAR Methods in Partnership
Formation Phase

• Stages
• Exploration
• Approach
• Reflection
• Communication

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Partnership Formation Phase1. Exploration Stage
Assess communities for potential partnership
opportunities

• Develop community profiles to determine which
  communities have significant growth in Hispanic
  immigrants
• Identify potential champion organization (e.g.
  University of Illinois Extension) to coordinate
  committee formation
• Organize initial meetings with Extension County
  Directors and other potential advocate
  organizations

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Partnership Formation Phase2. Approach Stage
Present case for CBPAR method and cost/benefit of
participation in Hispanic Health Advisory
Committees

• Develop presentation of the Hispanic health
  profiles
• Explain the philosophy of CBPAR
• Develop ownership in the project
• Clearly outline and negotiate with the community
  agreed upon roles and responsibilities

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Partnership Formation Phase2. Approach Stage
Technical Assistance

• Assist committee in determining
  relevance/feasibility of conducting health
  disparity research with focus on Hispanic
  residents
• Encourage committee to identify potential
  partnership organizations
• Help in recruitment/involvement of Hispanic
  community leaders/advocates

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Partnership Formation Phase2. Approach Stage
Capacity Building

• Dialogue with committee members about the stages
  of CBPAR
• Discuss Hispanic cultural competency issues
• Introduce the basic fundamentals of community
  research (e.g. IRB issues, community assessment
  approaches, research terminology)
• Develop plans for dissemination to maintain
  involvement of committee members and inform
  stakeholders/larger community about the project.

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Partnership Formation Phase3. Reflection Stage
Strengthen organizational leadership development
of committee

• Improve the participation of all the committee
  members in decision making
• Develop a sense of ownership with committee
  members sharing responsibilities
• Create an environment of cooperation and trust by
  honoring the principles of diversity friendly
  communities

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Partnership Formation Phase4. Communication
Stage Use local media to build and strengthen
partnership

• Develop communication strategies that are
  appropriate and appealing to the target audiences
  
• Use press releases, informational breakfasts etc.
  to engage community stakeholders and formal
  leaders
• Recruit when possible local media representatives
  into the partnership

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Results Partnership Formation Phase -
Communities Involved

• Beardstown
• Belvidere
• Carbondale / Cobden
• Champaign / Urbana
• Danville
• DeKalb / Sycamore
• Effingham
• Galesburg
• Monmouth
• Rochelle
• Rockford

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Results Partnership Formation Phase - Hispanic
Health Advisory Committees

• Formed and supported 11 Hispanic Health Advisory
  Committees (HHAC) in 14 IL communities
• Stakeholders involved
• Community Hospitals
• State/County Gov Org
• School Districts
• Higher Education Org
• Community Foundations
• Hispanic CBOs
• FBOs

• Non-Hispanic CBOs
• City Officials
• Social Service Org
• State Legislator
• Private Healthcare Providers
• Private Clinics)

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How to use the CBPAR Methods in Assessment Phase

• Stages
• Exploration
• Approach
• Reflection
• Communication

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Assessment Phase1. Exploration Stage Define
data 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
• What?
• How?

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Assessment Phase2. Approach Stage Define
appropriate research tools and procedures

• Define the target group(s) for the assessment
• Identify appropriate quantitative, qualitative or
  (ideally) mixed methods of data collection
• Survey
• Focus groups
• Community small group discussions
• Interviews
• Additional epidemiological data?
• Data triangulation

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Assessment Phase2. Approach Stage Technical
Assistance

• Design of reliable and culturally-appropriate
  methods of data collection
• Seek IRB approval
• Support in data entry and analyses
• Development of survey and/or focus group reports
  for the committees

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Assessment Phase2. Approach Stage Capacity
building

• Develop community capacity to
• Identify local health and healthcare disparities
• Assess reliability and cultural-appropriateness
  of various assessment tools
• Design instruments of data collection
• Develop procedures for data collection that are
  sensitive to the characteristics of the target
  population
• Understand, interpret, and prioritize assessment
  findings

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Assessment Phase3. Reflection Stage

• Reflect on the appropriateness and effectiveness
  of assessment method selected
• Request additional data analysis to further
  define assessment results
• Review results of assessment reports to identify
  key community health disparity issues

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Assessment Phase4. Communication Stage

• Create community assessment reports for
  distribution
• Share data with community health providers and
  county health departments
• Distribute assessment results to local media via
  press releases, newsletters, and radio/television
  interviews

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Results Assessment Phase-Assessment Strategies
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Results Assessment Phase- Community Assessment
Results Overall (Community Specific)

• Community health needs assessment surveys
  indicated that major health concerns for rural
  Illinois Hispanics surveyed include Oral
  Health, Diabetes, Cardiovascular Disease,
  Arthritis, Mental Health, and associated risk
  factors
• Major barriers to access healthcare include
  language differences, low insurance coverage, and
  high costs of services

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How to use the CBPAR Methods in Implementation
Phase

• Stages
• Exploration
• Approach
• Reflection
• Communication

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Implementation Phase1. Exploration Stage
Minigrant Proposal Development

• Identify priority areas
• Prioritize actions (interventions) based on
  assessment results
• Identify an administrative champion and seek
  additional institutions to partner with in the
  minigrant proposal
• Identify opportunities to leverage funds

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Implementation Phase1. Exploration Stage
Minigrant Proposal Development

• 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

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Implementation Phase2. Approach Stage Conduct
Minigrant Program

• Hold series of briefings to announce minigrant
  award
• Develop strategic plan for minigrant
  implementation
• Obtain support from additional community partners
  to successfully carry out minigrant activities

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Implementation Phase2. Approach Stage Technical
Assistance

• Provide technical assistance for community
  minigrant programs for example
• Feedback given to minigrant draft proposals
• Find evidence-based programs and interventions
• Assist in developing implementation plan
• Assist the community in identifying indicators of
  success
• Decision-making about prioritization of actions
• Organization of training workshops
• Information about additional funding
  opportunities
• Dissemination through news releases, community
  stakeholder meetings, and conferences

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Implementation Phase2. Approach Stage Capacity
building

• Build community capacity to
• Improve inter-institutional and interpersonal
  communication
• Bring all interested parties to the table
• Establish indicators of success
• Ensure commitment from partners
• Use an inclusive approach to decision-making
• Consult with bilingual and bicultural partners
  about feasibility of proposed strategies

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Implementation Phase3. Reflection Stage
Minigrant Program

• Monthly assessment of progress during committee
  meetings
• Analysis of minigrant activity
• Engage in activity specific reflection
• Rich environment for co-learning exists

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Implementation Phase4. Communication Stage
Minigrant Program

• Information dissemination
• Newsletters (English/ Spanish)
• Community Reports (English/ Spanish)
• Local newspaper articles (English/ Spanish)
• Mass Media Radio in Spanish (www.nuevoshorizontes
  .org)

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How to use the CBPAR Methods in Evaluation Phase

• Stages
• Exploration
• Approach
• Reflection
• Communication

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Evaluation Phase1. Exploration Stage Use
Guiding Questions

• EXTERNAL What impacts do local communities have
  on local efforts to address the issue of health
  disparity in rural communities? How and Why?
• INTERNAL What impacts does a university located,
  grant funded Community Outreach initiative have
  on national, state and local efforts to address
  the issue of health disparity in rural
  communities? How and Why?

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Evaluation Phase2. Approach StageConsider
Mixing Evaluation Frameworks and Models

• Community Comparison Case Stud(ies) (Yin, 1994)
• Evaluate each of the 14 communities
• Organizational (Donabedian, 1966)
• Structure Process Outcomes
• Impact REAIM (Glasgow, 1999)
• Reach, Effectiveness, Adoption, Implementation,
  Maintenance

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Evaluation Phase2. Approach StageTechnical
Assistance in Evaluation

• Provide training in basic purpose/uses of
  evaluation for various projects
• Assist in the development of instruments to
  measure the impact of the work of the project
• Provide analysis of data and share results

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Evaluation Phase2. Approach StageCapacity
Building in Evaluation

• Promote community re-assessment through
  reflection during evaluation activities
• Encourage community independence and self
  determination during evaluation discussions
• Support communities towards sustainability
  through identification of other funding sources
  (both community and university sources)

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Evaluation Phase3. Reflection StageIdentify
Evaluation Areas/Levels

• 1. Hispanic Health Advisory Committee Evaluation
• 2. Community Activities and Implementation
  Efforts
• a. Individual activities
• b. Individual mini-grant implementation
• 3. Global Community Impact
• a. Mini-grant Cluster Evaluation
• b. Community Oral History Evaluation
• c. Community Comparative Case Study

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Evaluation Phase4. Communication
StageEvaluation Products Outcomes (Community
Specific- DeKalb)

• EXTERNAL
• Medical Interpreters Training (daily, final 6
  month follow-up)
• Diabetes Program Evaluation
• Workshop on Depression and Anxiety
• Provider Resources Guide
• INTERNAL
• Key Informant Interviews
• Faculty and Staff
• Administrators
• Periodic SCOR (Strengths, Challenges,
  Opportunities, Recommendations)

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How to use the CBPAR Methods in Dissemination
Phase

• Stages
• Exploration
• Approach
• Reflection
• Communication

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Dissemination Phase1. Exploration Stage
Frameworks

• 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. 

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Dissemination Phase2. Approach
StageDissemination Process

• How targeted distribution of information and
  (intervention) materials to a specific public
  health audience can be successfully executed so
  that increased spread of knowledge about the
  information (intervention) achieves greater use
  and impact (CDC, 2007)
• Community, Practitioners, and Academic audiences

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Dissemination Phase3. Reflection Stage
Mini-grant Evaluation Summary (ongoing)

• 71 HHAC participants from 8 communities
• General Findings
• Top 3 collaborating partners Public Health
  Departments U of I Extension Hospitals
• Top 3 resources for project success Funding,
  Community Leadership, Support from EXPORT staff
• Project Increased credibility of commiittee
  with community 96
• Success in reaching intended audience 83
• Satisfaction in overall minirant quality 83
• Minigrant provided doorstep to move forward to
  address other needs in the Hispanic community
• Minigrants assist this area of community that
  was otherwise not be able to receive this type of
  information
• We really enjoy this project and hope to
  continue helping the community! ?

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Dissemination Phase4. Communication Stage
Dissemination Activities
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Dissemination Phase4. Communication Stage
ALIANZA

• Formation of the Alianza (Alliance), a
  partnership among the Community Health Advisory
  Committees (CHACs) located in each of the Project
  communities throughout Illinois.
• The Alianza provides a centralized structure
  for each Committee to be represented and to
  network
• Formation of the Alianza is viewed as a
  natural next phase in the community based
  participatory action research model being
  implemented in each community
• The Alianza is being co-chaired by two
  members representing two of the current CHACs.
  

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Evaluation of Capacity Building Objectives

• Evaluation of HHACs is one of the more important
  components of the CBPAR evaluation phase
• Evaluation utilizes the Structure-Process-Outcomes
  framework (Donabedian, 1980)
• Assists HHACs and Project to determine
• HHACs membership profile
• Lessons learned and suggestions to improve the
  partnership work
• HHACs short and long term plans
• Perceived community impact
• Best ways to support the HHACs work

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Evaluation Methods Instrument

• Evaluation survey was developed in
• partnership among Project
• evaluation experts, community outreach
• advisory committee, and HHAC members
• Final version consisted of 35-items
• Paper-based and self-administered in English
• or Spanish, depending on respondents language
  preference

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Evaluation Methods Procedure

• Survey data collection took place after the
  committee started the mini grant implementation
• Surveys were distributed by mail or through
  regular HHAC meetings with detailed instructions
  in a cover letter
• Completed surveys were mailed back to team for
  data analysis
• Only combined results from the various
  communities are presented here. Individual HHAC
  reports produced

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Preliminary Results (n 60 8 Committees)
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Results Partnership Profile (Cont.)

• FBOs
• Church groups
• LOCAL POLITICIANS
• Local political representatives (township)
• BUSINESS SECTOR
• Hispanic businesses
• EDUCATION SECTOR
• College Professors
• Public libraries
• ESL teachers

• HHACs need to expand involvement of
• COMMUNITY MEMBERS
• More Hispanic representation
• HEALTHCARE PROVIDERS
• FQHC
• Individual doctors
• Regional health departments
• Providers of health care
• COMMUNITY AGENCIES
• County Youth Service Bureau
• County Human Resource Center
• Community Services Department
• Counseling agencies

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Results Involvement
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Results Involvement

• Hope to use gains in improved health to extend
  help to other areas of need within Latino
  communities
• Improve quality of life in the community
• To convey needs and experiences of Hispanic
  populations served in my organization, and to
  convey barriers experienced by providers working
  with the Hispanic population as they attempt to
  access health care

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Results Levels of satisfaction / dissatisfaction

• Our HHAC is lt 1 year old. We lack financial and
  educational resources. We especially need Spanish
  Health books for our resource library (bilingual)
  and brochures
• Progress has been slow, but the end result is
  good
• Smaller groups need to feel able to make
  decisions and report to larger group instead of
  waiting until the meeting and discussing
  -discussing more

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Results Community impact and outcomes
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Results Community impact and outcomes

• IMPROVED KNOWLEDGE (Providers)
• Health providers now know what areas are of more
  concern to the population what the perceived
  barriers are to accessing health care
• Survey work and interpreter training benefit
  these groups
• AWARENESS BUILDING (Community)
• Increased knowledge of available resources
• Todos estamos a dar mas información para le
  gente hispana
• INFORMATION SHARING
• HHAC has established a strong base/clearing
  house for getting information to the Hispanic
  Community
• Through information sharing about critical needs

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Results Community impact and outcomes

• IMPROVED ACCESS TO PREVENTIVE SERVICES
• Mobile health screenings for school physicals,
  increased awareness of area health providers to
  need for improved services using first language
  support
• We have offered workshops gathering
  opportunities for Hispanic community cultural
  awareness advancement for the community in
  general
• IMPROVED QUALITY OF HEALHCARE COMMUNICATION
• Through Project partnership with other
  organizations led to improved health services for
  clients
• The mini grant has allowed us to send seven
  people to receive training as medical
  interpreters

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Results Strengths

• A desire to work together and increase awareness
  of needs
• A lot of local interest
• Buena organizacion
• Caring people who embrace diversity
• Collaboration across many diverse community
  groups
• Collaboration with a local grassroots Hispanic
  community group that was underway prior to
  development of our HHAC
• Commitment to assist community
• Common goal, technical support from Project team
• Common/focused response to needs survey
• Patience, flexibility, follow through, a sense of
  genuine caring abut target population
• The diversity of the group - willingness of all
  to participate to address the issues.

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Results Challenges

• A few of the meetings seem to get hung up on
  small issues
• Accessibility to targeted population because of
  language differences
• Dominant personality of one member
• El mantenerse firme en el plan
• Facilitators are disorganized
• Falta de comunicacion
• Group could use more members, especially from
  Latino groups
• Group needs stronger direction
• Need more health care providers to participate
  some organization representatives do not have the
  ability to impact barriers - n-ed different reps
  at the table some issues have been approached
  too generically with not enough specific local
  focus.
• No creo tener ninguna barrera

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Results Lessons learned

• Can identify and address needs via resources some
  of which are known but others will be discovered
• How extensive the community diversity is
• It's hard to get word out
• It is hard to get everyone together
• Many agencies share the same concerns. By
  involving local foundations on committee it is
  much easier to secure funding
• More about culture and needs
• Need is great
• Need to help more people
• Needs of Hispanic - helped in many ways to open
  eyes and to see possibilities.
• Pues me ayuda para mi colegio tambien mas
  networking bringing more projects into the
  Hispanic culture

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Results Lessons learned

• That different Hispanic groups can work together
  to improve health and that it helps to meet for
  purposes other than health in culture and current
  events
• That diversity really does add good dynamics to a
  group - we learn from each other
• The diversity of the needs of the Hispanic
  population as well as the various obstacles in
  reaching their needs
• The extreme need of the Hispanic population for
  interpretive services
• The needs of the Hispanic community are
  overwhelming and it is good to chip away a little
  at a time
• The power of caring when people came together
  around a common mission. The need to clarify
  committee structure and leadership early on
• There are many groups interested in assisting the
  Latino population
• Working together avoids reinventing the wheel
  we all can inform each other
• Working with a "grass roots" organization can
  present many challenges-while at the same time
  provide a close-up view of the needs of the
  community

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Results Plans for the future
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Results Plans for the future

• Activities with health providers might help build
  financial support for future
• Coordination of dental services
• Direct technical assistance with grant writing
  (beyond the mini-grants) continue to support and
  develop the Alianza
• My opinion is efforts should be directed at
  expanding funding for local providers already
  attempting to meet existing needs, but they are
  under-funded. Outreach, health ed and screenings
  should not be priority until primary
  care/advocacy needs are met
• Provide direct primary care

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Acknowledgements

• Illinois Prevention Research Center
• HHAC Coordinators
• HHAC members
• National Center on Minority Health and Health
  Disparities, National Institutes of Health
• University of Illinois College of Medicine at
  Rockford
• National Center for Rural Health Professions
• This presentation was supported by Cooperative
  Agreement Number 1-U48-DP-000048 from the Centers
  for Disease Control and Prevention. The findings
  and conclusions in this presentation are those of
  the authors and do not necessarily represent the
  official position of the Centers for Disease
  Control and Prevention.
• http//uic-ihrp.org/iprc