Nancy Winterbauer, PhD, MS

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Nancy Winterbauer, PhD, MS
Academic Community Partnerships in Health Research

• University of Florida, College of Public Health
  and Health Professions
• Duval County Health Department, Institute for
  Health Informatics and Research

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Overview

• Overview Academic Community Partnerships in
  Health Research
• Background Participatory Research /
  Community-based Participatory Research
• CBPR Example Family-nurse Care Coordination
  Partnership (FNCCP)

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Academic Community Partnerships

• Turning Point Program RWJ (http//www.turningpoi
  ntprogram.org/index.html)
• Racial and Ethnic Approaches to Community Health
  (REACH) CDC (http//www.cdc.gov/reach/)
• Mobilizing for Action through Planning and
  Partnerships (MAPP) NACCHO (http//www.naccho.or
  g/topics/infrastructure/MAPP/index.cfm)
• CDC Urban and Prevention Research Centers
  (http//www.cdc.gov/prc/index.htm)
• Communities that Care Center for Substance
  Abuse Prevention

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Academic Community Partnerships

• Academic Health Departments
• Duval County Health Department UF
• Orange County Health Department UCF
• Miami-Dade Health Department - FIU

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Academic Community Partnerships DCHD

• Institute for Health Informatics and Research
• DCHD Violence Prevention Task Force
• Medical Homes for CYSHCN Intervention Study
• Correctional Health Services Evaluation
• Criminal Justice, Mental Health, Substance Abuse
  Diversion Planning (http//www.dchd.net/services/h
  per/new/hper_home2.htm)

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Participatory Research Continuum
Community-based Participatory Research
Community-situated Research
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Community-based Participatory Research (CBPR) is
an Approach to Research

• CBPR is not a method or set of methods
• CBPR is an orientation to research changes the
  role of researcher and researched
• Goal is to influence change in community health,
  systems, programs, or policies

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Definition of CBPR

• 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 with the aim of
  combining knowledge and action for social change
  to improve community health and eliminate health
  disparities.

Source W.K. Kellogg Community Scholars Program
(2001)
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Background CBPR Principles

• Community-based Participatory Research
• Recognizes community as an unit of identity
• Builds on strengths and resources within the
  community
• Facilitates collaborative, equitable involvement
  of all partners in all phases of the research
• Integrates knowledge and intervention for mutual
  benefit of all partners
• Promotes a co-learning and empowering process
  that attends to social inequalities
• Involves a cyclical and iterative process
• Addresses health from both positive and
  ecological perspectives
• Disseminates findings and knowledge gained to all
  partners
• Involves long-term commitment by all partners

Source Israel B, Schulz A, Parker E and Becker
A. (1998). Review of community-based research
Assessing partnership approaches to improve
public health. Annual Review of Public Health,
19, pp. 173-202
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Rationale for CBPR

• Complex health and social problems ill-suited to
  outside expert research
• Increasing interest in health disparities
• Disappointing results in interventions
• Increasing community demands for collaborative
  efforts
• Increasing funder interests in community-driven
  versus community-placed research

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CBPR Example Family-Nurse Care Coordination
Partnership (FNCCP)

• Purpose Improve care coordination services to
  families of children with special health care
  needs, using a CBPR approach that incorporates
  the expertise of parents, nurses, researchers,
  and related partners.

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Goals FNCCP

• What were the goals of FNCCP?
• Teach families of children with special health
  care needs how to interact with multiple service
  systems, access services, and support them to
  advocate for their child with providers.
• Improve care coordination services to families of
  Childrens Medical Services in Northeast Florida.
  

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Background FNCCP

• Special needs children
• Care coordination

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PARTNERS 7 Parents 15 Nurses 8 Researchers
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FNCCP Research Aims

• Explore family and nurse experience with
  coordinating care benefits to families
  (baseline survey, nurse focus groups, parent
  interviews).
• Develop a family-nurse partnered care
  coordination intervention that will teach
  families to navigate systems of care and teach
  nurses to better support families.
• Deliver and evaluate our intervention with a
  sample of families whose children are enrolled in
  CMS through trained peer-parents with the support
  of nurses (follow-up survey, focus groups, parent
  interviews).

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5 Year History of Partnering

• UNF Community-Campus Service-Learning
  Partnerships, 2001-present
• Commission on Services for Children with Special
  Needs Creating systems of care for children with
  special needs. AAP-CATCH grant. 10,000
• Emerging collaborative research around care
  coordination (Wood, Winterbauer, Kruger)

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5 Month Grant Planning

• Jan 2005 Core team 15 parents, nurses,
  researchers, met to discuss RFP
  brainstorm issues related to care
  coordination, families, children, nurses
• Families can negotiate any system that they have
• the opportunity to learn. (C. Temple, 2005)
• FebApril 2005 Identified study aims, design,
  tools, Co-Is enlisted community support
• May 2005 Wrote and submitted grant
• JuneNov 05 Continued meeting
• March 2006 Notified of R21 funding

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Care Coordination Literature

• Limited theory research
• What do nurses and parents do?
• How do they navigate systems of care?How do
  nurses display family-centeredbehavior and
  partner with parents?How do families benefit?
• Significant because it limits our ability to
  identify which parents need / want help and to
  measure outcomes.

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The I-Team Mission - Aim 2

• Conduct guided co-learning sessions about
  family-centered care, care coordination,
  partnering, navigating systems, peer-provider
  relationships and themes that arise from data and
  discussions.
• Search for existing curricula materials and
  incorporate literature findings.
• Develop a family-centered, nurse-parent
  intervention, to include a care notebook, guide
  to navigating systems, and a training protocol.

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I-Team Logistics

• Time Frame May 2006 Jan. 2007
• Meetings 15, 10 am 2 pm, 60 hrs.
• Video conferencing
• Speaker phones
• Food, treats
• Location Service agencies
• CMS ARC
• Parent Stipend 60 per meeting / input
• Nurse Amenity Textbook

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Intervention Development Methods

• Small group work
• Operationalizing terms - storytelling
• e.g. coordination functions, barriers
  facilitators, family-centered care
• Literature review
• Nurse focus groups (n29)

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Co-Investigator Role

• Frequent meetings / phone conferences
• Plan agenda for each session
• Share roles for facilitation
• De-brief after meetings, reflect
• Map lessons learned to concepts
• Appreciate everyone

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The Intervention

• Peer-parent visit
• Deliver Care Notebook
• Navigating Guide
• Follow-up nurse phone call
• Parent-nurse role negotiation

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Intervention Products

• Joint training curriculum (parent / nurse)
• Script for peer-parent visit
• Script for nurse role-negotiation
• Care Notebook
• Conceptual content
• Navigating guide

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(No Transcript)
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FNCCP Results Summary

• Baseline Survey (n422)
• Baseline Interviews (n32)
• Interventions Delivered (n110)
• Follow-up Survey (n87)
• Follow-up Interviews (n15)
• Follow-up Nurse Focus Group
• Follow-up Peer-parent Focus Group

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Central Issues in Community-based Work

• Defining the community
• Community readiness community organizing
• FNCCP
• IPV
• Health Disparities
• Knowledge intervention
• Restraints on participation (community and
  researchers)
• Time
• Social / policy change
• Efficacy
• Funding

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Acknowledgements

• Parents
• Kathy Calvert
• Desireé Durham-Deleon
• Sondra Mallow
• Maria Quiñones
• Nancy Tretina
• Teresa White

Nurses (4 regions) Paula Charnock Susie
Ross Melana Smith Lila Angelou Pam Jones Ken
Seipp Diana Magalski Joan Mathis Kathy
Allen Kelly Medei Sallie Lucas Pat Smith Laila
McCormick Sheila Hinton Sherry Buchman
Funded National Institute of Nursing Research
R21NR009781, 2006-2008
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Contact Information

• Nancy Winterbauer, PhD, MS
• Research Assistant Professor
• University of Florida
• College of Public Health and Health Professions
• Department of Behavioral Science and Community
  Health
• Coordinator, Center for Community Health Research
• Institute for Health Informatics Research
• Duval County Health Department
• 904.253.2056
• Nancy.Winterbauer_at_phhp.ufl.edu