Power Sharing in Youth-Led Community Campus Partnerships

1. Power Sharing in Youth-Led Community Campus Partnerships Laurie J Bauman Preventive Intervention Research Center Albert Einstein College of Medicine

2. Community Research Partnerships • Community-campus partnerships are common and valued • Partnerships usually are not “CBPR” i.e., shared power over the study topic, design, methods, analysis and use of results. • Sharing power is a challenge • Researchers don’t want to give up control • Researchers have advantages that make equality difficult • This challenge is particularly difficult to manage when the community partners are teenagers • The lessons we learned may be useful to any collaboration with vulnerable, disenfranchised groups.

3. CBPR “A collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings.  CBPR begins with a research topic of importance to the community and has the aim of combining knowledge with action and achieving social change...”--Community Health Scholars Program, WK Kellogg Foundation “from acting upon to acting with”

4. Rationale for CBPR • Traditional research has failed to solve complex health disparities. • research designs fail to incorporate multi-level explanations of health • researchers do not understand many of the social and economic complexities motivating individuals’ and families’ behaviors. • Community members are angry about being “guinea pigs” in parachute research and demand that research address their locally identified needs. • recruiting research participants is harder • communities feel used by researchers in the past; researchers get their publications, communities got nothing in return

5. Rationale, continued • Community involvement improves the science • identify variables • design and adaptation of research instruments • identify important program components • assist with cultural/normative fit • True collaboration can rebuild trust and respect between researchers and communities

6. Teenagers as Community Partners in CBPR?! • CBPR has focused a good deal on youth • However, most projects rely on youth as advisors not as partners • We were funded by NCMHD in November 2005 to work with youth as partners to reduce health disparities among Bronx teenagers (R24 MD001784) • We had to design an infrastructure that would support youth as a community and give them control over the project.

7. Goals for this Presentation • Describe how we applied principles of CBPR when the community is teenagers • Describe the challenges to true power sharing with youth and some solutions • Describe the health disparity youth chose and why • Describe the intervention they developed

8. Bronx Youth as Partners in CBPR • GOAL: To reduce health disparities among African American and Latino youth in the Bronx • UsingCommunity-based participatory research with our community, Bronx adolescents our agenda in this 3-year project was: • Year 01: Choose one health disparity • Year 02: Develop an intervention • Year 03: Pilot the intervention • Year 04-09 Continuation for RCT to test the intervention

10. A.L.O.T. • Composition • 14 Bronx teenagers aged 14-19 • Two researchers • Two program specialists • Two physicians • Support • Three staff members • Outside evaluator, 4 interns, website coordinator • BYAP Coalition, 20 Bronx organizations

12. Our Unique Two-Level Partnership • The “Bronx Youth as Partners Coalition” • SCIENCE: Einstein, Bronx colleges and universities • PRACTICE: Hospitals, clinics, insurance, community agencies, faith-based community leaders • POLICY: Bronx government and policy makers • Grew from 20 to 54 agencies in 3 years, because youth were the leaders • Albert Einstein College of Medicine is the lead agency • Coalition provided assistance without intimidating and dominating youth

13. What did the Coalition do? • Meet with youth 3-4 times per year for two hours • Make presentations to ALOT • Provide data on the health of Bronx youth • Mentor ALOT members • Offer their sites for meetings (Fordham University, Affinity Health Plan, NY Public Library, Fordham Road, Lehman College, Bronx Borough President’s Office) • Advise on decisions to be made, voted on disparity • Give workshops (sexual harassment, YD)

14. Challenges to Teen-led Partnerships • Teens are at a power disadvantage with adults • Legally they are minors • Verbal, cognitive skills • Social skills • Confidence • Experience • Disenfranchised • Youth in the Bronx are not a “mobilized” community but are a community geographically and in identity • The population “ages out” taking with them the experience and skills we worked to give them

15. CBPR Principles (1) CBPR is participatory (2) CBPR is committed to full equity (3) The community determines the research agenda and intervention technology (4) CBPR empowers (5) CBPR builds on strengths (6) CBPR nurtures growth (7) CBPR is sensitive to the insider-outsider dynamic (8) Avoid selecting the community members

16. Applying Principles of CBPR to A.LO.T. We should not chose the community • Created the opportunity for interested youth to step forward • Distributed flyers and brochures to Coalition partners • Sought leaders/scholars as well as troubled out-of-school youth • Teens called us directly, to show initiative • We provided information, gauged their level of interest • Interested teens are invited to attend a teen group like ALOT • Decided if they want to participate • We excluded the rare (<5%) teens who were inappropriate • From volunteerswe selected teens to assure diversity in gender, age, race/ethnicity, schools and neighborhoods.

17. Applying Principles of CBPR to A.L.O.T. CBPR is participatory • Participatory means who has the right to speak, analyze, act, decide • Problem: Most CBPR efforts involve the community directly in conducting research • “Comprehensive involvement” not practical with youth • consent, IRB issues • they have limited time to conduct the research • don’t control their own time

18. Applying Principles of CBPR to A.L.O.T. Making CBPR participatory: Solutions • Specify what participation is at every phase. • Identify benchmarks in the research process to involve members of the partnership • Participation does not mean everyone is involved in the same way or the same degree or capacity. • Have paid staff do the work, have youth DIRECT it.

19. Applying Principles of CBPR to A.L.O.T. CBPR Values Equity • Equity means an equal role in decision-making and equality of contribution. • Luke: at the individual level, power is the ability to make decisions within the rules of the game; at the organizational level, power is the ability to define the rules of the game. The latter is our goal. • Problem: Difficult when the community is economically marginalized and disenfranchised, as not had the power to name or define its own experience

20. Strategies to Facilitate Power Sharing CBPR Values Equity: Solutions • Teens are in the majority to help offset the natural advantages adults have • We have a skilled neutral moderator lead all meetings. She facilitates collaborative rather than adversarial interactions • We foster learning together as the model, so ALOT adults aren’t always teaching teens but we all learn together as students, which fosters equality • doing research and reporting back • hearing expert testimony • talking to other Bronx youth • voting

21. Strategies to Facilitate Power Sharing CBPR Values Equity: Solutions • Adults ALOT members are not in authority as employers or as disciplinarians. • BYAP project staff, who are not ALOT members, enforce rules. • Hours, pay, quality of work • Correcting and disciplining • Is that our job? • ALOT made the rules as a group, by vote.

22. Strategies to Facilitate Power Sharing CBPR Values Equity: Solutions • ALOT Coordinator advocates for youth • Collaborate with a consistent group of adults and select the ALOT adults carefully • Use small group work within ALOT • Have teen-only ALOT meetings • We conducted an evaluation of the partnership, e.g. leadership, power sharing, synergy, efficiency

23. Working with a Community That “Ages Out” • Over 3 years, two-thirds of the original ALOT members aged out or moved, military, college • We created “alumni status,” a formal role that retains these older experienced members in a non-voting capacity. • New teens are recruited to maintain representativeness • Challenge is to maintain momentum based on previous ALOT decisions • Hard to mix new members and veterans

24. Integrating New Members into A.L.O.T. • Mentoring model for new younger members • After a few meetings, new members choose a veteran to be a peer mentor • As mentors, veteran members emerge as the leaders that they are • New members learn assertiveness skills and their new role and responsibilities

25. Continuing Issues • Putting teenagers (< age 16) on payroll • Sexual harassment • Fine line between discipline and collaboration • How explain adult’s bad behavior? • Sometimes youth resist accepting the power • Leadership within ALOT shifts • Food, food insecurity • Size of the coalition: how do you know? • Love triangles – these may be true of adult partnerships too, but not as often

26. Unexpected Benefits of a Youth-Led Partnership • The voice of the affected community was unique and important. We did a better job with them. Our product is superior. • They inspired the entire Bronx community coalition, held them in rapt attention. • They are charming and passionate. They have no hidden agenda, and they make an eloquent case for intervention. • They are (embarrassingly) frank and politically “incorrect” and will ask (anyone) for what they need.

27. Conclusions • Youth can be equal research partners • Youth community-campus partnerships require a strong commitment from the team, some creativity and a high tolerance for ambiguity • They involve more effort than traditional collaborative research, but the benefits are extraordinary

28. Choosing One Health Disparity • Disparities studied: mental health, reproductive health, obesity, violence/injury, tobacco use, and alcohol/drug use • Reading (online and library) • Expert lectures • Interviews with community members • Data analysis of existing data sets • Consultation with the BYAP coalition in person and through a computer Delphi voting process

29. A.L.O.T. Chose Mental Health • Between 6 and 9 million young people have mental or behavioral problems • 20% have psychiatric disorders • 9%-13% have serious emotional disturbance

30. Mental Health Disparities in Adolescents • 40% of low-income Black and Latino youth exhibit significant psychological symptoms. • Suicide attempts among inner-city African American adolescents are twice the national rate. • The treatment available to African American and Latino adolescents is of poor quality and is difficult to access • Only 1 in 5 youth who need treatment receive it. • Between 50%-75% of youth with disorders do not engage in treatment or drop out of care. • These disparities are increasing

31. Mental Health of Bronx Youth • 34% of Bronx students reported that, in the past year, they felt “so sad or hopeless almost every day for two weeks or more in a row that they stopped doing some usual activities” • 9.9% of Bronx teen respondents reported a suicide attempt in the past 12 months • Among Latina and Black girls in the Bronx, the attempted suicide rate was 15%

32. Why Mental Health? • It is neglected. • Stigma and public ignorance is high. • It is a common problem that affects many youth. • It often goes unrecognized in minority adolescents. • Other health disparities are related to mental health. • Availability of youth friendly competent services is poor.

33. Shifting the Paradigm:A.L.O.T’s Intervention Theory • ALOT began planning an intervention to reduce mental health disparities. • In the process, it developed an intervention “theory” with three principles that shifts current service paradigms. • The first and most important principle is: All youth need positive mental health programming. Don’t limit the intervention to those with disorders.

34. Shifting the Paradigm:A.L.O.T’s Intervention Theory • The second principle is: Symptomatic teens should receive youth-friendly, evidence-based mental health services in community settings where they already are, from clinicians they already know.

35. Shifting the Paradigm:A.L.O.T’s Intervention Theory • The third principle is: Mental health treatment will be more successful if it is combined with positive youth development.

36. Youth Change the Paradigm • ALOT youth loved learning about disorders • Wanted to learn how to help their friends • Eventually they asked a key question: When do we study positive mental health? • Inner-city youth are exposed to many well intentioned programs (to prevent mental health problems, HIV/STIs, pregnancy, drug and alcohol use, violence, obesity) • In the aggregate, we give an unintentional, demoralizing message -- teens are a problem to be solved or fixed or prevented. “You should be building us up.”

37. Our Intervention: Bronx Thunder • Based on the three principles, BxThunder has three parts Part I: TEEN • Universal positive youth development • Peer education training • Communication skills • Problem solving skills • Trust, respect • Positive peer culture • 14 sessions, 7 weeks, 3.5 hours/week • Award winning, evidence based

38. Our Intervention: Bronx Thunder Part II:Youth-Led Workshops • TEEN graduates participate in a 6-week internship giving mental health workshops • They use peer educator skills • Educate peers and the community • Workshop designed to: • Decrease stigma • Increase knowledge • Involve youth

39. Our Intervention: Bronx Thunder Part III:Targeted Cognitive Behavioral Therapy • TEEN trainers are clinical psychologists • Identify youth with psychological disturbance • Two psychology externs co-train on TEEN • Externs provide CBT to those who need it • Youth whose disorders aren’t appropriate for CBT will be referred

40. Our Intervention: Bronx Thunder • Universal positive youth development • TEEN • Workshop • Targeted CBT treatment for those who need it • Treatment given by people who teens know • Cost effective because externs offer treatment • Doesn’t require mental health licensing

41. Randomized Trial of Bronx Thunder • Funded by NCHMD June 2008 • The study involves 17 Coalition partners: • 3 sites for BxThunder • 3 Bronx universities provide externs • 3 mental health agencies train externs in CBT • 6 CBOs will take mental health referrals • 2 will work on sustainability • BxThunder sites are: • John V. Lindsay Wildcat Academy Alternative High School • Citizen’s Advice Bureau’s Jill Chaifetz Transfer High School • Mosholu-Montefiore Community Center

42. Thank You!

43. Current A.L.O.T. Work in Progress • Mostly new members • Started with mental health and worked on a new project • Studied eight topics in mental health of their choosing: bereavement, body image, coping with stress, family issues, peer pressure, school issues, sexual relationship issues, violence and abuse. • Which one did they choose?

45. Making the Rules • ALOT considered various models of decision-making (e.g., simple majority, complete consensus) and chose a 66% vote requirement • full consensus too difficult to achieve consistently • 51% did not assure full equity • Other rules: lateness, cell phones, irregular attendance, participation

46. What about Efficiency? • Efficiency is one of the criteria that a partnership is judged on • Projects that drag on will likely fail • We believe with Israel et al. that day-to-day project management is best done by paid staff • ALOT performed as a project steering committee. It set priorities and policy then project staff, interns and researchers provided the expertise and did the work.

47. A.L.O.T. Team • Laurie Bauman • Qui Juan “Q” Bellinger • Abigail Boetang • Yvette Calderon • Darlene Corporan • Patricia Danials • Seanika Ladson • Sean Law • Sylvia Lim • Ramn McFarlane • Adriana Ortiz • Virginia Ramos • Jonathan “Junior” Reyes • Angelic Rivera • Jamie Sclafane • Martha Velez • Jasmine Vega • Kenneth Wilson ALUMNI • Miguel Beltre • Jonathan Ramos • Felicity Arenas • Elvis Guzman • Tanisha Jones STAFF • Rosy Chhabra, Coalition moderator • MarniLoIacono, Project Director • Janice Robinson, ALOTCoordinator