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Alianza Contra el Asma Pedi

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APNI, ASPIRA, Banco Popular of Puerto Rico, Quality for Business Success, Inc. , Puerto Rico American Lung Association. Health care providers and systems ... – PowerPoint PPT presentation

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Title: Alianza Contra el Asma Pedi


1
Alianza Contra el Asma Pediátrica en Puerto
Rico(Allies Against Asthma in Puerto Rico)
  • Marielena Lara, Principal Investigator
  • Edna Pacheco, Executive Director
  • Rita Rivera, Community Director

2
Outline
  • Alianza overview
  • Strengths, Challenges, Strategies in Two Areas
  • Community Involvement / Community-Centered
    Approach
  • Data Evaluation / Research Approach
  • Experience Integrating Community Research
    Approaches

3
Who is the Alianza?
  • A community-centered asthma coalition in Puerto
    Rico,
  • founded in January 2000, and composed of
  • Local community leaders and organizations
  • Americorps Vista, Lideres Independientes de Luis
    Lloréns Torres, Luis Lloréns Torres Resident
    Councils, Head Starts and Schools, Martinal
    Properties, Inc., Police Department
  • Island-wide organizations with expertise and
    commitment to asthma, high-risk communities,
    and/or coalition work
  • APNI, ASPIRA, Banco Popular of Puerto Rico,
    Quality for Business Success, Inc. , Puerto Rico
    American Lung Association
  • Health care providers and systems
  • Luis Lloréns Torres Diagnostic and Treatment
    Center, Medical Card Systems, San Jorge
    Childrens Hospital
  • University and research institutions
  • UCLA/RAND Program for Latino Children with
    Asthma, University of Puerto Rico (UPR) Medical
    Sciences Campus

4
What is unique about the Alianza?
  • Our mission is to serve the child population with
    the highest asthma prevalence in the United
    States
  • Our target population is the largest housing
    project in the Caribbean
  • We are an organization that integrates multiple
    approaches, disciplines, and experiences,
    including
  • strong community leadership participation from
    the beginning
  • health care system change capacity related to
    local care financing organization structure
  • special research evaluation expertise with the
    target population

5
Alianzas Vision Mission
  • Vision
  • Establish a model health services program in
    Puerto Rico to improve the quality of life of
    children with asthma and their families, through
    community intervention strategies and interagency
    collaboration agreements.
  • Mission
  • Develop a pilot model in the Luis Lloréns Housing
    Project within three years
  • Prepare this community for sustaining services by
    itself after these three years
  • Develop strategies for disseminating the model in
    Puerto Rico and for working with other
    communities

6
Alianzas Action Plan Strategic Areas
  • Empower children with asthma and their
    families/caregivers
  • Increase community awareness and knowledge about
    asthma
  • Improve access, quality, and financing of asthma
    health care services
  • Improve collaboration between the health care
    system, schools, child care centers, and other
    private and public community agencies

7
Community-Centered Coalitions Strengths
  • The continuous presence and voice of the
    communitys leadership in decision-making and
    implementation, have been key for
  • engaging/motivating broader community
    participation and awareness
  • designing interventions that really work in the
    community
  • recognizing complex risk factors and developing
    solutions in a high-risk environment with
    immediate pressing social concerns
  • building community-based capacity for
    interventions that are sustainable after the
    grant period

8
Community-Centered Coalitions Strengths
(Continued)
  • Some key Alianza successes can be attributed to
    strong community leadership, advocacy, and
    political visibility
  • These include
  • Participation in community-friendly health fairs
    and educational activities that provide
    entertainment and other incentives for
    community-wide attendance
  • Interagency agreement to pilot enhanced asthma
    services and health care coverage to the
    intervention community
  • In-kind and cash contributions for Alianza
    activities
  • Other coalition partners actions galvanized by
    the communitys sense of urgency, created by
    constant reminders of immediate needs

9
Community-Centered CoalitionsChallenges
  • Communication gaps and clashes related to
    differences in social norms, personal attitudes,
    training, and previous experiences
  • Power and role conflicts among the community
    leadership, and other coalition staff and
    leadership
  • Other challenges illustrated by Steering
    Committee members comments
  • different expectations and priorities about
    coalitions activities
  • Another challenge is to balance the
    communitys perceptions of need for services and
    immediate action with the expectations and
    requirements of the funding agency and the
    procedures of the academic grantee institutions.
  • developing trust between community and university
    partners
  • One of our challenges is to articulate and
    promote adequate communication between the
    community and the university environments.

10
Successful Strategies for a Community-Centered
Coalition
  • Acceptance these kind of challenges are normal
    and part of coalition work
  • Promote Communication use a neutral facilitator
    who is sensitive to the community perspective
  • Clarify Expectations Agreements
  • Delineate clear roles and responsibilities
  • Establish mutual expectations and make partners
    accountable
  • Principle-Guided Conflict Resolution
  • Use basic principles to guide actions
  • 1) respect all perspectives, since all are
    necessary to achieve the goal
  • 2) maintain a community focus whatever is done
    has to work in the community setting
  • Perseverance try over and over to communicate in
    language that everyone understands

11
Strategies to Build Trust Between Community
University Partners
  • Develop a common sense of mission partners need
    to feel they gain from effort and are not being
    taken advantage of
  • Promote collaboration and a sense of team effort
    community partners need to feel that their input
    is essential
  • Carry-out activities that have an immediate
    benefit while the master plan is still in the
    works
  • Employ members of the community
  • Work with community partners to ensure safety of
    research staff in high-crime areas
  • Recruit staff who have the skills and willingness
    to work directly with the community

12
Data Evaluation Strengths
  • Data for both case-finding and program evaluation
    are available from more than one source
  • Population-based survey in the target community
  • Claims data
  • Managed care company asthma registry
  • Population-based survey integrates both research
    and community approaches, including
  • Incorporating previously tested survey questions
    to permit comparison to national data
  • Reviewing and pilot-testing of survey questions
    and protocol by a joint community-research team
  • Adapting and evaluating language and cultural
    appropriateness for target population

13
Data EvaluationChallenges Strategies
  • Challenge Research processes can be at odds with
    grassroots
  • approaches
  • Random sample study design versus providing
    service to all children
  • Validated survey instruments versus quicker
    community methods
  • Strategies
  • Articulate combined purpose survey can be used
    to identify and assess needs of children and
    families evaluate what intervention components
    work justify need for more funding
  • Mutual education researchers learn about
    community strategies community leaders learn
    about survey methods
  • Team approach develop creative solutions that
    meet both community and research needs

14
Experience Integrating Community Research
Approaches
  • The research team adapted the National Asthma
    Survey to develop a Puerto Rico Childhood Asthma
    Survey in Spanish
  • A joint community-research team conducted several
    mutual education pre-piloting sessions to
  • Evaluate whether the questions would be
    understood by the target population
  • Outline modifications of the survey protocol to
    make it more community user-friendly without
    compromising research needs
  • In the near future, plan to use similar process
    to
  • Complete pilot-testing of the survey and protocol
    in the target community
  • Carry out data-collection and quality-monitoring
    activities for baseline evaluation

15
Summary
  • The Alianza has effectively used coalition
    strengths and strategies to overcome the
    challenges faced by a community-centered
    coalition
  • The voices of the Alianzas Steering Committee
    summarize it well
  • The Alianza has gained the trust of those who
    work directly with the community, and that day
    after day work hard to improve the health of the
    community
  •  We have been successful in establishing a sense
    of missionthat the members of the Alianza
    understand the importance of fighting pediatric
    asthma through joint efforts and a collaborative
    willby overcoming differences in opinion and
    approach
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