# Presentation: 311955

## Community-Based Participatory Research: An Approach & Methods

**Eugenia Eng, DrPH**
**School of Public Health**
**University of North Carolina**
**Chapel Hill, NC**
**Meera Viswanathan, PhD**
**Research Triangle Institute International**
**Research Triangle Park, NC**

## Workshop Overview

- Inherent dualities of public health research: Why is the CBPR approach needed?
- Findings from a systematic review of the evidence: What are the characteristics of high quality studies taking the CBPR approach?
- Case example of methods used for a CBPR study to reduce and control STD transmission among African American women in a southern rural community

## Background:  Geni

**Academic**
**Researcher**
**Teacher**
**Practitioner**
**Community Health Educator**
**Trainer**
**Heritage**
**Physician to last Empress of China**
**Truck farmer growing Chinese vegetables in Jacksonville, Florida**

## Background:  Meera

**Academic**
**Researcher**
**Policy analyst**
**Practitioner**
**Demographer**
**Trainer**
**Heritage**
**India**

## Duality of a Bowl

- 	**Boundary, Border,  Control, Limitation**

**	****Space, Room, Freedom, Opportunity**

## Duality of Public Health 

***Science looks for truth, practice looks for what works.  What works is true, and what is true works.***
- 					**-****Guy Steuart, 1963**

## Duality of Public Health

**Research**
**Individual Responsibility**
**Needs-Based**

**Practice**
**Common Good**
**Human Rights-Based**

## Contradictions 

**	**
**	****Protection of human subjects has guarded communities of color from the research process**

** ****	****Research on communities of color has rarely been directly beneficial and sometimes has actually done harm.**

## Contradictions

**	**
**	****Problems of disease, illness, and risk  are selected based on epidemiological data**

**	****Issues selected based on everyday life experience**

## Contradictions

**	**
**	****Study design and budget  proposed reflects review of scientific literature and feasibility**

**	****Study design, budget, and proposal reflects community ownership and authenticity**

## Contradictions

**	**
**	****Recruitment and retention based on science and “best guesses”**

**	****Recruitment and retention based on trustworthiness of viewpoints**

## Contradictions

**	**
**	****Psychometric testing of measures adopted or adapted from other studies **

**	****Measures developed and tested to increase credibility and dependability of data**

## Contradictions

**	**
**	**

** ****	****Effective and sustainable interventions are informed by the concerns, culture, and assets of participating community **

- Effective and sustainable interventions are informed by theory and “best practices” of other studies

## Contradictions

**	**
**	**

** ****	****Interpretation, dissemination, and translation of findings aimed at transferability through CBO channels of communication**

- Interpretation, dissemination, and translation of findings aimed at generalizability and publications in peer reviewed literature

## Duality:  Partnership Approach to		 Research

**Equitably involves research partners in all aspects of research**
**Mutual learning is an on-going process**
**Equitably contributes expertise and sharing responsibility and ownership**
**Integrates knowledge gained with interventions to improve the health and well-being of community members**

## Ladder of Community Participation in Decision-Making

| Citizen Control |
| --- |
| Partnership |
| Tokenism |
| Therapy |
| Manipulation |

**Big “P”**

**Little “P”**

**No “P”**

## Evidence-Based Review of CBPR* 

**Research Questions**
**How has CBPR been implemented to date with regard to the quality of research methodology and community involvement? **
**What is the evidence that CBPR efforts have yielded the intended outcomes? **

- * Viswanathan M , Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Webb L, Sutton SF, Swinson T, Jackman A, & Whitener L. (January 16, 2004). Community-Based Participatory Research. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Final Evidence Report).

## Evidence-Based Review of CBPR*

**Identify and refine key scientific questions through**
**Consultation with a large group of experts prior to the study**
**Consultation with a standing Technical Expert Advisory Group during the course of the study**

**Identify sources of evidence to address key questions **
**MEDLINE® **
**Psycinfo**

**Generate consistent search terms for each source**

**Conduct searches and compile all obtained literature**

**Conduct additional searches where necessary to obtain all published articles relevant to a study**

**Evaluate each study against prespecified criteria**

** **
**Sociofile**
**Cochrane Collaboration resources**

**All included studies meet the following criteria:**
**English language**
**Set in United States or ****Canada**

**Design a data abstraction form**

**Extract data from each study using a data abstraction form**

**Synthesize data **

**Judge strength of evidence **

**Report results**

** **
**Health outcome**
**At least one community collaborator**

**Systematic Review Methods**

- * Viswanathan M , Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Webb L, Sutton SF, Swinson T, Jackman A, & Whitener L. (January 16, 2004). Community-Based Participatory Research. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Final Evidence Report).

## Evidence-Based Review of CBPR

**Characteristics of CBPR studies**

| Characteristics | Number |
| --- | --- |
| General characteristics |  |
|       Total number of studies identified  | 60 |
|       Average number of publications per study  | 2 |
| Publication dates of the 
first article from the study | Percent |
|       Before 1980 | 2% |
|       1980-1985 | 0% |
|       1986-1990 | 3% |
|       1991-1995 | 13% |
|       1996-2000 | 42% |
|       2001 to 2003 | 40% |

- * Viswanathan M , Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Webb L, Sutton SF, Swinson T, Jackman A, & Whitener L. (January 16, 2004). Community-Based Participatory Research. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Final Evidence Report).

## Evidence-Based Review of CBPR*

**Characteristics of CBPR studies**

| Substantive topics | Percent |
| --- | --- |
|       General health concerns | 18% |
|       Environmental hazards | 15% |
|       Hypertension/heart disease/diabetes | 13% |
|       Services for HIV/AIDS | 10% |
|       Substance abuse including smoking | 8% |
|       Cancer screening and prevention | 7% |
|       Women’s health  | 7% |
|       Asthma prevention | 3% |
|       Occupational health | 3% |
|       Seniors’ health | 3% |
|       Other miscellaneous concerns (disabilities, hospice access, childhood immunization, nutrition, mental health) | 12% |

- * Viswanathan M , Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Webb L, Sutton SF, Swinson T, Jackman A, & Whitener L. (January 16, 2004). Community-Based Participatory Research. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Final Evidence Report).

## Evidence-Based Review of CBPR*

| Type of funding sources (of all identifiable funding sources) | Percent |  |
| --- | --- | --- |
|      Federal agencies | 57% |  |
|             National Institute of Environmental Health  Sciences | 15% |  |
|             Centers for Disease Control and Prevention | 13% |  |
|             National Cancer Institute | 4% |  |
|             US Environment Protection Agency | 4% |  |
|             National Institute on Alcohol Abuse and Alcoholism | 3% |  |
|            Other agencies | 19% |  |
|      Foundations or private sources | 20% |  |
|            W.J. Kellogg Foundation | 4% |  |
|            Robert Wood Johnson Foundation | 3% |  |
|            Other foundations or private sources | 13% |  |
|      State funding |  | 15% |
|      Universities |  | 8% |

- * Viswanathan M , Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Webb L, Sutton SF, Swinson T, Jackman A, & Whitener L. (January 16, 2004). Community-Based Participatory Research. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Final Evidence Report).

## Type of Study and Research Design*

**Type of Study and Research Design***

## Community Involvement*

**Community Involvement***

## Comparing Research Quality and Community Involvement across Study Designs*

**Comparing Research Quality and Community Involvement across Study Designs***

- * Viswanathan M , Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Webb L, Sutton SF, Swinson T, Jackman A, & Whitener L. (January 16, 2004). Community-Based Participatory Research. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Final Evidence Report).

## Implications for Practice*

**  ****Our review is limited by the variable reporting standards in the field.  Authors and journal editors need to be aware of the need for and commit to improved standards for reporting both research process and results****.**

**Implications for Practice***

- * Viswanathan M , Ammerman A, Eng E, Gartlehner G, Lohr KN, Griffith D, Rhodes S, Webb L, Sutton SF, Swinson T, Jackman A, & Whitener L. (January 16, 2004). Community-Based Participatory Research. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Final Evidence Report).

## Necessary Conflict

_**By whom**_** research is to be conducted (Which groups come to the table?)**
_**For whom**_** research is to be conducted (Which issues get to the table?)**
_**How**_** research is to be conducted (Which groups shape awareness of the issues?)**** **

## Which Groups Come to the Table?

## University at the Table

**Investigators from Epidemiology and Health Behavior & Health Education**
**Community Outreach Specialist**
**Ethnographer**
**Graduate Students**

## Funder at the Table

**National Institute of Allergies & Infectious Disease**

## Community & Agency at the Table: Formative Phase Community Advisory Group

**Commercial sex worker**
**Ex-drug abuser**
**Transgender party host**
**Farm operator who employs migrant farm workers**
**Ministerial Alliance pastor**
**Cosmetologist**
**Barber**
**Recreation center staff**

**Undercover police**
**Processing assistant at County Health Department**
**Nurse at County Health Department**
**Social worker at shelter for battered women**
**Job trainer at Community Action Agency**
**High School counselor**

## Groups at the Table

- Community
- Outreach
- Specialist

**Community**
**Advisory**
**Group**** **

**Community’s**
**Social **
**Networks**

**Agencies’ **
**Formal Helping**
**System**

**NIAID**

**UNC**

## Which Issues Get to the Table?

## University Issues that Get to the Table

**Ranked third among NC’s 100 counties in highest rate of new HIV infections for 1995-96: **
**	****33 per 100,000 person-years**** **
**Gonorrhea rate in 1992-93 was comparable to two major US cities with the highest 1992 rates:**** **
**	****1746 cases per 100,000 person-years**** **
**Geographic distribution of gonorrhea cases in 1993 was concentrated in the ****southeast census blocks**** **
**Southeast side of town is where the majority of ****low income African Americans**** still lives **

## Community Issues that Get to the Table

**Community assessment found STDs among top 3 priority issues**
**Condoms are used only with **_**side partners**_** because unprotected sex with a **_**main partner**_*** *****defines a committed relationship**
**Perceived barriers to prompt seeking of STD care are lack of anonymity and feeling misunderstood at the County Health Department**

## Community Issues that Get to the Table

**Men and women at risk for STDs seek information, assistance, and advice about sexual intimacy **_**from women**_**, who are **_**not**_** members of their social networks**
**Women at risk for STDs are connected to the wider community through **_**women**_** who assist them with basic needs such as childcare, jobs, transportation, and housing**

## Which Groups Shape Awareness of Issues?

## Community & Agency at the Table:Design Phase Community Resource Group

**Social Worker at  Shelter for Battered Women**
**President of Ministerial Alliance & Housing Authority Board Member**
**Director of Community Center & Part-time Police Officer**
**Announcer at WEED Radio Station & Ex-Drug Abuser**
**Assistant Director of Day Care Center**
**Counselor at High School**

**Female Job Training Instructor at Community Action Agency**
**Male Job Training Instructor at Community Action Agency**
**Records Manager at Community Health Center**
**Social Worker at Department of Social Services**
**Processing Assistant at County Health Department**
**Counselor at Technical College**

## Groups that Shape Awareness of Issues

- 	Community Outreach      Specialist & UNC

**Lay Health**
**Advisors**** **

**Community’s**
**Natural Helping **
**Networks**

**Agencies’ **
**Formal Helping**
**System**

**Community **
**Resource Group**

**NIAID**

## CRG and UNC

**Apply findings to:**
**Design and implement strategy to recruit natural helpers as LHAs**
**Develop training curriculum to include session on *****Finding Out if the Program Works***
**Construct community survey questionnaire**

## CRG and UNC

**Interface with formal helping system**
**Pilot test LHA recruitment and training**
**Local agency staff observe and participate in LHA training and graduation**

## Funder

**Probation and External Review**
**An intervention focussed on assisting women at-risk for STDs may place them at-risk for violence from partners**
**Men should be included as lay health advisors**

## From Conflict To Positive Change

**Site Visit arranged for External Reviewers & Funder**
**Presentations by UNC investigators & COS**
**Q&A session with CRG and Lay Health Advisors**
**Consequences**
**3 LHAs invited to present at APHA**
**Investigators invited to serve on CDC study section, as consultant on a proposal, and write a book chapter**

## Outcomes

**Outcomes**

**Among women reporting symptoms, increase of 60% seeking STD care within 3 days of symptoms **
**Among women reporting care seeking, increase of 26% seeking STD care when thought had STD but no symptoms**

-                  Thomas, Earp & Eng, 2000

## Power of Community as Co-Practitioner

***When key community members... are asked to help set priorities and to identify related health concerns, [they] may become committed to the program and can be helpful in unleashing the voluntary energy that is to be tapped through [this] network.***
- 		**-****CDC’s Guidelines for Community ****	****	****  Demonstration Projects**

## Power of Community as Co-Investigator

***	******[T]he opportunity...for communities and science to work in tandem to ensure a more balanced set of political, social, economic, and cultural priorities, which satisfy the demands of both scientific research and communities at higher risk.***** **
- 				**-John Hatch et al., 1993**

## Power of a Bowl