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

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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 of 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