1. BUILDING SUCCESSFUL COMMUNITY COALITIONS: BUILDING SUCCESSFUL COMMUNITY COALITIONS: ENGAGING AND SUSTAINING GRASSROOTS INVOLVEMENT Marielena Lara, MD, MPH Jane Peterson, PhD Elisa Nicholas, MD, MSPH Maura Dwyer, MPH

2. Outline 1. Why engage communities in coalitions? 2. What is community engagement and participation? 3. Our coalitions’ experiences engaging grassroots and community stakeholders 4. Lessons learned

3. Why Engage Communities in Coalitions? Fundamental belief that those most impacted will be the most knowledgeable about: - - What is acceptable in their community, what will “really” work - - Contextual factors in a high-risk environment with other pressing concerns Key for promoting broad participation, awareness and intervention effectiveness Sustainability: A commitment to and building capacity for the long term Ethical in light of the existing disparities in health

4. Grassroots and Community Stakeholders Individual community residents and leaders  (e.g. parents of children with asthma) Organizations of community residents  (e.g. neighborhood parents’ forum) Community-based organizations - Staff composition, board membership with strong community connections  (e.g. family centers, advocacy)

5. Degree of Community Engagement and Participation Coalition Processes COMMUNITY Health care, government and other representation OTHER “Grassroots” and other representation Participation Leadership Decision-making Adapted from Wallerstein (2003) Shared Control Community/Others Stakeholders

6. Allies Against Asthma Experiences Engaging Grassroots and Community Stakeholders Challenges Lack of awareness of the problem Apathy of some families Gaps in some community capacities Communication gaps and clashes about expectations and priorities Slow process Community members hold coalition accountable Power and role conflicts Other barriers for participation Successful Strategies Community-wide asthma education and other activities Community-engaging recruitment activities, home visiting and parent mentorship programs Training and other programs to develop community leadership and capacity Respect, employ facilitator(s), embrace conflict Get started…action, so community members see something happen Honesty, plan for sustainability Assure power and representation in coalition Steering Committee and staff

7. Community-Wide Asthma Education Long Beach Asthma Wellness Fair King County Concord Fair Milwaukee Asthma Wellness Day

8. Community-Engaging Recruitment Activities  Promote participation and interest through creative community-friendly recruitment strategies  Entertainment by dancers promotes participation in a health fair in Lloréns Torres, Puerto Rico  Play by community adolescent troupe provides asthma education

9. Community Health Worker Home Visiting Programs Engage difficult-to-reach parent and families Asthma education and referrals by community members themselves Assessment of risk-factors modifiable through intervention Long Beach Home Visits

10. Developing Community Leadership and Organizational Capacity Nurturing community leaders Building on existing parent and community leadership groups Linking the coalition to neighborhood-based groups

11. Embracing Conflict and Moving Forward Sources of conflict - Differences in: languages social norms management style - Power struggles over: resources decision-making and control - Administrative “red tape” Conflict resolution strategies: Acceptance, communication, trust- building, clarify/modify expectations, perseverance Principle-guided leadership: respect for all perspectives and maintain community focus

12. Joint Leadership and Decision-Making  “When we began to organize the coalition, we always put the community at the center, with the work teams around that center. They all exist to help the community.”  “The work [of the coalition]…and their successes to date, are a direct result of being a collective group with a strong voice that includes community leaders from many organizations, combined with the voice of the community.”  “I would hope that we include more grassroots agencies…the ones with a passion for serving the underserved. Because of the trust they have built, they have a lot of potential to convince people to change behavior.”  “With a steering committee, you’re dealing with a lot of strategic plans and budgets and that’s not what most [grassroots community] people have a lot of interest or patience with. They want to do something.” Full Coalition Meeting, DC Asthma CoalitionKing County Steering Committee Meeting

13. Summary of Findings  Building community-centered coalitions takes time  Success of coalition efforts depends on grassroots community involvement  Approach has strengths and challenges  Gives voice to some who might not have been heard  Develops community capacity for other health and social issues

14. Summary of Findings (cont.) The voices of the Allies Against Asthma Program summarize it well: “It’s not just having folks at the table. It’s having the right folks at the table—the folks who really care about the problem and the communities they serve. That, to me, has made all the difference in this program.” “The [coalition] has gained the trust of those who work directly with the community, and who day after day work hard to improve the health of the community.” “These people are totally committed to this project because they see the end result of asthma and its impact on the folks in their community.” “We have been successful in establishing a sense of mission—that the members of the [coalition] understand the importance of fighting pediatric asthma through joint efforts and a collaborative will—by overcoming differences in opinion and approach.”

15. Our Goal: Building Asthma-Friendly Communities with Happy Children with Controlled Asthma