An Approach and Methods
NRSA Trainees Research Conference Slide Presentation (Text Version)
By Eugenia Eng, Dr.P.H., and Meera Viswanathan, Ph.D
On June 5, 2004, Eugenia Eng and Meera Viswanathan made a presentation at the 10th Annual National Research Service Award (NRSA) Trainees Research Conference. This is the text version of their slide presentation. Select to access the PowerPoint® slides (230 KB).
Slide 1
Community-Based Participatory Research: An Approach & Methods
Eugenia Eng, Dr.P.H.
School of Public Health
University of North Carolina
Chapel Hill, NC
Meera Viswanathan, Ph.D.
Research Triangle Institute International
Research Triangle Park, NC
Slide 2
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.
Slide 3
Background: Geni
- Academic:
- Practitioner:
- Community Health Educator.
- Trainer.
- Heritage:
- Physician to last Empress of China.
- Truck farmer growing Chinese vegetables in Jacksonville, Florida.
Slide 4
Background: Meera
- Academic:
- Researcher.
- Policy analyst.
- Practitioner:
- Heritage:
Slide 5
Duality of a Bowl
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Space, Room, Freedom, Opportunity." An arrow pointing to the outside is labeled, "Boundary, Border, Control, Limitation."
Slide 6
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
Slide 7
Duality of Public Health
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Practice, Common Good, Human Rights-Based." An arrow pointing to the outside is labeled, "Research, Individual Responsibility, Needs-Based."
Slide 8
Contradictions
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Research on communities of color has rarely been directly beneficial and sometimes has actually done harm." An arrow pointing to the outside is labeled, "Protection of human subjects has guarded communities of color from the research process."
Slide 9
Contradictions
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Issues selected based on everyday life experience." An arrow pointing to the outside is labeled, "Problems of disease, illness, and risk are selected based on epidemiological data."
Slide 10
Contradictions
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Study design, budget, and proposal reflects community ownership and authenticity." An arrow pointing to the outside is labeled, "Study design and budget proposed reflects review of scientific literature and feasibility."
Slide 11
Contradictions
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Recruitment and retention based on trustworthiness of viewpoints." An arrow pointing to the outside is labeled, "Recruitment and retention based on science and 'best guesses'."
Slide 12
Contradictions
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Measures developed and tested to increase credibility and dependability of data." An arrow pointing to the outside is labeled, "Psychometric testing of measures adopted or adapted from other studies."
Slide 13
Contradictions
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Effective and sustainable interventions are informed by the concerns, culture, and assets of participating community." An arrow pointing to the outside is labeled, "Effective and sustainable interventions are informed by theory and 'best practices' of other studies."
Slide 14
Contradictions
The slide features a picture of a bowl. An arrow pointing to the inside of the bowl is labeled, "Interpretation, dissemination, and translation of findings aimed at transferability through CBO channels of communication." An arrow pointing to the outside is labeled, "Interpretation, dissemination, and translation of findings aimed at generalizability and publications in peer reviewed literature."
Slide 15
Duality: Partnership Approach to Research
- Equitably involves research partners in all aspects of research.
- Mutual learning is an ongoing process.
- Equitably contributes expertise and sharing responsibility and ownership.
- Integrates knowledge gained with interventions to improve the health and well-being of community members.
Slide 16
Ladder of Community Participation in Decision-Making
The slide features a picture of a ladder. The rungs are labeled:
- Citizen Control.
- Partnership.
- Tokenism.
- Therapy.
- Manipulation.
An arrow labeled "Big 'P'" is pointing between "Citizen Control" and "Partnership." An arrow labeled "Little 'P'" is pointing at "Tokenism." An arrow labeled "No 'P'" is pointing between "Therapy" and "Manipulation."
Slide 17
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?
Slide 18
Evidence-Based Review of CBPR*
Systematic Review Methods
The slide features a series of boxes connected by arrows:
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.
|
Points to:
Identify sources of evidence to address key questions:
- MEDLINE®.
- Psycinfo.
- Sociofile.
- Cochrane Collaboration resources.
|
Points to:
Generate consistent search terms for each source. |
Points to:
Conduct searches and compile all obtained literature. |
Points to:
Conduct additional searches where necessary to obtain all published articles relevant to a study. |
Points to:
Evaluate each study against prespecified criteria. |
Points to:
All included studies meet the following criteria:
- English language.
- Set in United States or Canada.
- Health outcome.
- At least one community collaborator.
|
Points to:
Design a data abstraction form. |
Points to:
Extract data from each study using a data abstraction form. |
Points to:
Points to:
Judge strength of evidence. |
Points to:
Slide 19
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% |
2001-2003 |
40% |
Slide 20
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% |
Slide 21
Evidence-Based Review of CBPR*
Type of funding sources (of all identifiable funding sources):
Substantive topics |
Percent |
Federal agencies |
57% |
National Institute of Environmental Health Sciences |
15% |
Centers for Disease Control and Prevention |
13% |
National Cancer Institute |
4% |
U.S. Environment Protection Agency |
4% |
National Institute on Alcohol Abuse and Alcoholism |
3% |
Other agencies |
19% |
Foundations or private sources |
20% |
W.J. Kellogg Foundation |
3% |
Robert Wood Johnson Foundation |
3% |
Other foundations or private sources |
13% |
State funding |
15% |
Universities |
8% |
Slide 22
Type of Study and Research Design*
The slide features a bar chart showing:
Type of Study |
Substantive topics (percent of studies) |
Evaluated intervention |
Intervention either incomplete or not evaluated fully |
Non-interventional studies |
Experimental designs |
7% |
7% |
0% |
Quasi-experimental designs |
8% |
2% |
0% |
Observational |
0% |
0% |
5% |
One-group pre and post-test studies |
3% |
0% |
0% |
Nonexperimental designs |
2% |
22% |
45% |
Slide 23
Community Involvement*
The slide features a bar chart showing:
Type of Community Involvement |
Percent of Studies |
Selection of research question |
47% |
Proposal development |
23% |
Financial responsibility for grant funds |
32% |
Study design |
47% |
Recruitment and retention |
83% |
Measurement instruments and data collection |
83% |
Intervention development, implementation |
63% |
Interpretation of findings |
65% |
Dissemination of findings |
68% |
Application of findings to health concern identified |
47% |
Slide 24
Comparing Research Quality and Community Involvement across Study Designs*
The slide features a bar chart showing:
Study Design |
Scores for research quality |
Scores for community involvement |
Experimental designs |
2.7 |
2.3 |
Quasi-experimental designs |
2.2 |
2.2 |
Observational |
2 |
2.1 |
One-group pre and post-test studies |
1.9 |
2.3 |
Nonexperimental designs |
1.5 |
2 |
Slide 25
Implications for Practice*
- High quality research and intense community involvement are not contrary to each other. Our review uncovered several examples of outstanding research combined with collaborative community participation throughout the research process.
- 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.
Slide 26
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?)
Slide 27
Which Groups Come to the Table?
The slide features an image of a table, with 4 chairs around it.
Slide 28
University at the Table
- Investigators from Epidemiology and Health Behavior & Health Education.
- Community Outreach Specialist.
- Ethnographer.
- Graduate Students.
Slide 29
Funder at the Table
- National Institute of Allergies & Infectious Disease.
Slide 30
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.
Slide 31
Groups at the Table
The slide features a circle graph. The largest circle, labeled "Community Advisory Group" is connected by lines to 3 smaller circles labeled "Community's Social Networks," "Agencies' Formal Helping System," and "Community Outreach Specialist." The circle labeled "Community Outreach Specialist" is connected to a smaller oval labeled "UNC," which is connected to another small oval labeled "NIAID."
Slide 32
Which Issues Get to the Table?
The slide features an image of a table, with 4 chairs around it.
Slide 33
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.
Slide 34
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.
Slide 35
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.
Slide 36
Which Groups Shape Awareness of Issues?
The slide features an image of a table, with 4 chairs around it.
Slide 37
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.
Slide 38
Groups that Shape Awareness of Issues
The slide features a circle graph. The largest circle, labeled "Community Resource Group," is connected by lines to 2 smaller circles labeled "Lay Health Advisors," and "Community Outreach Specialist & UNC." The circle labeled "Lay Health Advisors" is connected to 2 circles labeled "Community's Natural Helping Networks," and "Agencies' Formal Helping System." The circle labeled "Community Outreach Specialist & UNC" is connected to another circle labeled "NIAID."
Slide 39
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.
Slide 40
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.
Slide 41
Funder
Probation and External Review:
- An intervention focused on assisting women at-risk for STDs may place them at-risk for violence from partners.
- Men should be included as lay health advisors.
Slide 42
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.
Slide 43
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.
A bar chart shows:
Age |
<3 days symptoms |
No symptoms |
Baseline |
35 |
50 |
18 mos |
56 |
63 |
Thomas, Earp & Eng, 2000
Slide 44
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
Slide 45
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
Slide 45
Power of a Bowl
The slide present a picture of a bowl.
Current as of September 2004
* Viswanathan M, Ammerman A, Eng E, et al. (January 16, 2004). Community-Based Participatory Research. Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services (Final Evidence Report).
Internet Citation:
Community-Based Participatory Research: An Approach and Methods. Text Version of a Slide Presentation at a National Research Service Award (NRSA) Trainees Research Conference. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/fund/training/engtxt.htm