Power Sharing in Youth-Led Community Campus Partnerships

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Power Sharing in Youth-Led Community Campus
Partnerships

• Laurie J Bauman
• Preventive Intervention Research Center
• Albert Einstein College of Medicine

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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 dont 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.

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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

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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

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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

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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.

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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

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Bronx Youth as Partners in CBPR

• GOAL To reduce health disparities among African
  American and Latino youth in the Bronx
• Using Community-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

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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

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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

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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 Presidents Office)
• Advise on decisions to be made, voted on
  disparity
• Give workshops (sexual harassment, YD)

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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

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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

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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 (lt5) teens who were
  inappropriate
• From volunteers we selected teens to assure
  diversity in gender, age, race/ethnicity, schools
  and neighborhoods.

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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
• dont control their own time

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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.

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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

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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 arent 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

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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.

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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

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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

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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

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Continuing Issues

1. Putting teenagers (lt age 16) on payroll
2. Sexual harassment
3. Fine line between discipline and collaboration
4. How explain adults bad behavior?
5. Sometimes youth resist accepting the power
6. Leadership within ALOT shifts
7. Food, food insecurity
8. Size of the coalition how do you know?
9. Love triangles these may be true of adult
   partnerships too, but not as often

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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.

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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

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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

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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

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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

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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

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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.

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Shifting the ParadigmA.L.O.Ts 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. Dont limit the intervention
  to those with disorders.

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Shifting the ParadigmA.L.O.Ts 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.

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Shifting the ParadigmA.L.O.Ts Intervention
Theory

• The third principle is
• Mental health treatment will be more
  successful if it is combined with positive
  youth development.

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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.

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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

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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

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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 arent appropriate for CBT
  will be referred

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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
• Doesnt require mental health licensing

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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
• Citizens Advice Bureaus Jill Chaifetz Transfer
  High School
• Mosholu-Montefiore Community Center

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Thank You!
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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?

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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

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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.

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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
• Marni LoIacono, Project Director
• Janice Robinson, ALOTCoordinator