COMMUNITY BASED PARTICIPATORY RESEARCH (CBPR) FOR HEALTH AND SOCIAL JUSTICE

DR. SONJA MACKENZIE SANTA CLARA UNIVERSITY

NAINA KHANNA AND NERISSA IRIZARRY

POSITIVE WOMEN’S NETWORK-USA

APRIL 24, 2015

AGENDA 1.  Welcome and Webinar Overview (Naina and Nerissa) 3:00 – 3:10 2.  CBPR – Principles and Overview (Sonja) 3:10 – 3:50

3.  CBPR Questions and Discussion (Sonja) 3:50 – 4:00

4.  What do we want to learn? (Sonja and all) 4:00 – 4:45

5.  Next steps (Naina and Nerissa) 4:45 – 5:00

WEBINAR OVERVIEW •  Part 1: Principles and Overview of community-based

participatory research •  Learning objectives •  Principles •  Questions •  Differences between CBPR & traditional research •  Ethical considerations

•  Part 2

•  CBPR in action •  Facilitated discussion

PART I: CBPR PRINCIPLES AND OVERVIEW

LEARNING OBJECTIVES

u Describe the historical roots, definition, rationale and key principles of CBPR

u Describe how CBPR differs from traditional

research approaches u Identify ethical considerations for researchers

and community partners

“Research is formalized curiosity. It is poking and prying with a purpose.

It is a seeking that [s]he who wishes may know the cosmic secrets of the world

and they that dwell therein.” (Zora Neale Hurston, Dust Tracks on a Road, 1942)

“Listen to my heart-beats per second. It tells you all you need to know.” - Prerna Lal, Artist: Favianna Rodriguez

CBPR OVERVIEW

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 and action for social change to improve community health.”

WK Kellogg Community Health Scholars Program

FOR THE PEOPLE, BY THE PEOPLE

 

CPBR  is  conducted  by  and  for  those    

most  directly  affected  by  the  issue,  condi9on,  situa9on,  or    

interven9on  being  studied  or  evaluated.    

FOUNDATIONS OF CBPR

Action research – Kurt Lewin, 1940 Empowerment education - Paolo Freire, 1970

"Education either functions as an instrument which is used to facilitate

integration of the younger generation into the logic of the present system and bring about conformity or it becomes the practice of freedom,

the means by which men and women deal critically and creatively with reality and discover how to participate in the transformation of their world.”

Paulo Freire, Pedagogy of the Oppressed

RATIONALE “Traditional” research has failed to solve complex health disparities. Community members, weary of being “guinea pigs,” are increasingly demanding that research address their locally identified needs. Significant community involvement can lead to scientifically sound research. Research findings can be applied directly to develop interventions specific for communities. This approach to research has the potential to build greater trust and respect between researchers and communities.

PRINCIPLES OF CBPR Recognizes community as a 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 action for mutual benefit of all partners.

PRINCIPLES, CONT’D Promotes a co-learning and empowering process that attends to social inequalities. Involves a cyclical and incremental process. Addresses health from both positive and ecological perspectives Disseminates findings and knowledge gained to all partners. Israel B, Schultz 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, 173-202.

QUESTIONS TO ASK BEFORE STARTING

What is driving the research agenda? Do you and your team have the necessary skills?

• Cultural competence • Communication • Listening • Sharing power and control over decisions

QUESTIONS/COMMENTS

What do you think about how this project fits into CBPR principles? What are the most important CBPR values or principles for this project?

CBPR VS TRADITIONAL RESEARCH

STAGES OF RESEARCH 1.  Identify health concern 2.  Design study and get funding 3.  Develop recruitment and retention plan 4.  Design measurement instrument(s) 5.  Collect data 6.  Design and implement intervention 7.  Analyze data 8.  Dissemination

Identified health

concern(s) Study design and funding

Participant recruitment

and retention system

Full participation of community in identifying issues of greatest importance.

Community representatives involved with study design and proposal submission.

Community representatives provide guidance regarding recruitment and retention strategies.

Issues identified based on epidemiologic data and funding opportunities.

Design based entirely on scientific rigor and feasibility; funding requested primarily for research expenses.

Approaches to recruitment and retention based on scientific issues and “best guesses” regarding reaching community members and keeping them involved in the study.

Trad

ition

al

CB

PR

Increased motivation to participate in research process.

Increased acceptability of study approach, include funds for community.

Enhanced recruitment and retention.

Measurement instrument(s) designed and data collected

Intervention design and implemented

Data analyzed and interpreted, findings disseminated and translated

Measurement instruments developed with community input and tested in similar population.

Community members help guide intervention development.

Community members assist researchers with interpretation, dissemination, and translation of findings.

Measurement instruments adopted/adapted from other studies. Tested chiefly with psychometric analytic methods.

Researchers design intervention based on literature and theory.

Researchers report findings from statistical analysis and publish in peer-reviewed journals.

Potentially sensitive issues handled better and increased reliability and validity of measures.

Assures greater cultural and social relevance to the population served, increasing the likelihood of producing positive change.

Assures greater sensitivity to cultural and social norms and climate and potential group harm and enhances potential for translation of findings into practice.

Trad

ition

al

CB

PR

ETHICAL CONSIDERATIONS

ETHICAL RESEARCH PRINCIPLES

v Respect for human dignity v Respect for free and informed consent v Respect for vulnerable persons v Respect for privacy and confidentiality v Respect for justice and inclusiveness v Maximizing benefits and minimizing

harms

CBPR AND ETHICS

Who represents and speaks for “the community”? Critical attention to research process and implementation: power dynamics, privacy and confidentiality, research as justice

QUESTIONS? DISCUSSION  

PART 2: WHAT DO WE WANT TO LEARN?

CBPR IN ACTION

v  Recruit  and  train  a  community  research  team.  v  The  research  team  determines  the  ques0ons  the  

research  or  evalua0on  will  try  to  answer.  v  The  research  team  plans  and  conducts  the  ac5vi5es.  v  The  team  prepares  and  presents  a  report  and  

recommenda5ons  on  its  work.  v  Take,  or  try  to  bring  about,  appropriate  ac5on.  v  Provide  an  opportunity  for  team  members  to  reflect  on  

their  learning  and  experience  in  a  CBPR  process.  

QUESTIONS 1.  What do we think some of the problems

and issues facing women with HIV are?

2.  Given these issues, what do we most want to know about services for women with HIV in our area?

3.  Are there any changes in funding or

service availability to consider locally?

METHODS QUESTIONS 1.  RECRUITMENT: Where will we recruit

women with HIV to participate in a survey?

2.  KEY STAKEHOLDERS: Who are some of the key stakeholders we might talk to (individuals or organizations)?

CPBR RESOURCES

Community Campus Partnerships for Health Community Toolbox (University of Kansas) Agency for Healthcare Research and Quality (AHRQ) National Institutes of Health (Funding and Training) Southeast Community Research Center For a listing of journals that publish CBPR, visit http://depts.washington.edu/ccph/links.html#Journals

NEXT STEPS 1.  Send nirizarry@pwn-usa.org your contact info (phone &

email) 2.  Accept the invitation for the Google group- for ease of

communication 3.  Next webinar training: April 29th at 3pm PST/6pm EST

1.  Survey Design 4.  Save the date for our final webinar training: May 15th at

3pm PST/6pm EST 1.  Project Implementation

CONTACT:

SONJA MACKENZIE ASSISTANT PROFESSOR

PUBLIC HEALTH PROGRAM SANTA CLARA UNIVERSITY

SMACKENZIE@SCU.EDU 408-551-3424

Artist: Favianna Rodriguez