Community-Based Participatory Research: An Academic-Community Partnership to Promote Adolescent Health

1. Community-Based Participatory Research:An Academic-Community Partnership to Promote Adolescent Health Geri Dino, PhD Principal Investigator & Director WV Prevention Research Center Associate Professor Department of Community Medicine Robert C. Byrd Health Sciences Center Faculty Development Seminar September 20, 2007

2. Purpose • Describe the underlying principles and processes of community-based participatory research (CBPR). • Discuss how CBPR methods were utilized to develop, evaluate, and disseminate an international teen smoking cessation program. • Illustrate how CBPR-principles can go from local solutions to national impact.

3. The Lay of the Land • West Virginia (WV) is the second most rural state in the US. Its has a history of geographic isolation, economic exploitation, lower than average standards of living and educational attainment, economic underdevelopment, and restricted social and economic opportunities. • WV also has one of the worst health profiles in the nation. WV consistently ranks near the bottom in total mortality, and has a higher than average prevalence of associated chronic disease risk factors, especially those related to sedentary lifestyle, obesity, and smoking.

4. The Lay of the Land • Yet, WV clings to a sense of pride, tradition, culture, and customs. In many ways, West Virginia is a large community. • “ West Virginians see themselves as one big community. If you’re traveling out of the country and you meet someone from WV, you feel like you already know them because you will understand their culture, values, and spirit.”Nancy Walker, WV PRC CPB Member

5. A Context of Collaboration Imagine, it was 1995 and WV lead the nation in teen smoking. Almost half of WV’s teens smoked cigarettes. There was a public cry for help.That same year, the CDC-funded WV Prevention Research Center became operational. The newly-formed PRC and its state partners agreed that the WV PRC serve as the central enterprise to improve population health by conducting research to improve public health policy and practice. Partners identified youth tobacco control as a primary research focus for the PRC. Teen smoking cessation was identified as the top priority in tobacco control. PRC resources were committed to this effort.

6. The Central Approach Community-based Participatory Research “Community-based participatory research is 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 with the aim of combining knowledge and action for social change to improve community (health)…” W.K. Kellogg Foundation, Community Health Scholars Program

7. Community-based Participatory Research: Blending Perspectives • Researchers bring knowledge of theory, research, methods, and evidence-basis for policy and practice-research to practice. • Practitioners have first hand knowledge of the issues, limits, and demands of the field. This knowledge helps shape the research process to be meaningful to the user audience and recipients- practice to research.

8. “If we want more evidence-based practice, we need more practice-based evidence.” * Dr. Larry W. Green Adjunct Professor, Department of Epidemiology and Biostatistics, UCSF Co-Director, Program on Society, Diversity, and Disparities, UCSF Comprehensive Cancer Center.

9. Working Together to Strengthening School-based Tobacco Policy Where It Began Tompkins, N.O., Dino, G.A., Zedosky, L.K., Harman, M., & Schaler, G. (1999). A collaborative partnership to enhance school-based tobacco control policies in West Virginia. American Journal of Preventive Medicine,1,: 29‑34.

10. Partners • WV Prevention Research Center • WV Department of Education Office of Healthy Schools • WV Bureau for Public Health • Coalition for a Tobacco Free WV

11. Study Objectives • Examine the correspondence between WV’s K-12 school tobacco control policies and programs, and the CDC's (1994) Guidelines for School Health Programs to Prevent Tobacco Use and Addiction (referred to as CDC Guidelines). • Provide recommendations to the DoE regarding policy modifications and policy implementation. • Identify additional action steps to strengthen school-based tobacco practice state-wide. • Disseminate findings and recommendations state-wide.

12. CDC Recommendations • Develop & implement a school tobacco use policy (7 identified elements) • Provide instruction about short & long term negative physiologic & social consequences, social influences, peer norms & refusal skills • Provide prevention education in K-12 grades; especially intensive in middle school & reinforced in high school • Provide program specific training for teachers • Involve parents or families • Support cessation efforts among students & school staff • Assess program at regular intervals

13. Study Methods • Partners collaboratively developed a 40- item telephone survey to assess the elements of school tobacco policies related to the CDC Guidelines. • All middle/junior high (n=131), high (n= 128), and “combined” (n=31) schools* and a random sample of elementary schools (n=179) were selected for inclusion, for a total of 472 schools. • The State Superintendent of Schools provides a letter of support for the study. All county Superintendents received a study information packet. • Principals from selected schools were sent copies of the study materials prior The WVU Survey Research Center conducted the 15 and 20 minutes survey.

14. Study Results • 418 schools participated for an overall response rate of 89%. • Few schools complied with all recommended policy components: 10% - elementary, 21.9% - middle/junior, and 32.7% - high schools, (p = .0003). • 94% of elementary 86.2% of middle/junior, and 81.5% of high schools provided tobacco prevention education. • Few schools provided cessation services - only 15% offered cessation services.

15. Study Impact – Changing School Policy This lead to four critical outcomes: • Partners revised the WV school tobacco control policy to be consistent with the Guidelines; the policy is approved in 1998. • All 55 counties adopt compliant policies • Research-based implementation guidelines are collaboratively developed and dissemination via internet and at state-wide principal training. • The partners decide to develop a new teen smoking cessation program for WV youth.

16. Study Impact: Service to the State Becomes Service to the Nation • The WV PRC chooses teen smoking cessation as the focus for its core research project – develop and evaluate a state-of the-art program for WV teens. • The CDC puts the American Lung Association in contact with the WVU PRC. WV, the WVU PRC, and ALA share common goals and a common agenda. • State partners agree that partnering with the ALA would increase the program’s impact exponentially. • The program was called Not On Tobacco or N-O-T.

17. Working Together to Develop Effective, Adoptable Interventions The American Lung Association’s International Teen Smoking Cessation Program Dino, G., Horn, K., Zedosky, L., & Monaco, K. (1998). A positive response to teen smoking: Why O-T? NASSP Bulletin, (82), 46-58. Dino, G.A., Horn, K., Goldcamp, J., Kemp-Rye, L., Westrate, S., & Monaco, K. (2001). Teen smoking cessation: Making it work through school and community partnerships. Journal of Public Health Management and Practice, 7(2), 71-80.

18. N-O-T Development Process:A Collaborative, Participatory Approach

19. Features of the Collaborative Spirit N-O-T development based on the 6 C’s of collaboration* • Commitmentto a common goal • Sharedcontributionof unique and complimentary skill sets • Open, regular communication • Compatibilityof values and guiding principles • Consensus that involves sharing concerns and issues honestly • Acknowledging creditappropriately *J. Lancaster, 1985

20. Beginning the CBPR Process-Developing Trust and Respect • Getting acquainted • Identifying common agendas • Identifying shared values • Identifying community-based needs • Selecting the research questions • Identifying collaborators and stakeholders

21. Developing Trust and Respect • Clarifying roles and expectations • Developing a communication plan • Discussing strategies for managing conflict and consensus • Engaging in regular self reflection • Open and honest sharing of feelings and ideas

22. From Trust to Program Development • Conducted literature reviews in prevention and adult cessation. • Conducted pilot research. • Discussed relevant literature with partners. • Engaged in information exchange. • Identified concerns and interests of potential users and consumers of N-O-T. • Drafted, shared, drafted, shared…

23. A voluntary smoking cessation program for 14-19 year-old adolescents who are regular smokers (average > 5 cigarettes a day) and who want to quit smoking. Grounded in Social Cognitive Theory. Includes 10 weekly sessions. Uses a prescribed facilitator curriculum and a standard training protocol. N-O-T Program Overview

24. N-O-T Program Overview • Gender-Sensitive • Utilizes selected, trained facilitators. • Promotes a total health approach. Goals include • quit smoking • reduce the number of cigarettes by non-quitters • increase healthy behaviors in nutrition and physical activity • improve life skills such as stress management, coping, decision-making, communication, and interpersonal skills

25. Reasons for smoking and reasons for quitting Smoking history Nicotine addiction Physical, psychological, and social effects of smoking Preparing to quit Physical, psychological, and social aspects of quitting and withdrawal Managing the quitting process Stress management Dealing with family and peer pressure Volunteerism Recognizing social and media ploys Accessing and maintaining social support N-O-T Curriculum Topics

26. Working Together to Evaluate Program Effectiveness Providing Practice-Based Evidence Horn, K., Dino, G., Goldcamp, J., Kalsekar, I., & Mody, R. (2005). The impact of Not On Tobacco on teen smoking cessation: End-of-program evaluation results, 1998-2003. Journal of Adolescent Research, 20 (6), 640-661.

27. Evaluation Overview • The ALA and the PRC decide to conduct a two-part evaluation strategy for N-O-T.Between 1998-2003, two types of school-based evaluations were conducted in NC, WV, FL . • Empirical research studies (6) • Follow rigorous scientific standards/ • Use a quasi experimental design (matched comparison group) • Field-based “real world” evaluation (10) • Pre/post program single group evaluation (without hands-on researcher involvement) • Absence of a control/comparison group

28. Measurement • Standard surveys were administered to participants at baseline and at the end of the program (approximately three-months post baseline) to assess smoking status. • Quit status was determined by the self-reported answer “no” to the question, “Are you currently smoking?” assuming at least 24- hour abstinence. [Empirical studies collected days of continuous abstinence] • In the empirical studies, a Carbon Monoxide (CO) Record was used to document the results of a CO test to validate self-reported quit rates (CO < 9ppm). CO validation was not obtained in the field-based evaluations.

29. Participants • Inclusion: Participants were regular smokers/at least 1-5 cigarettes per day on weekdays and/or weekends. • Participation was voluntary • Approximately 6,130 youth from 5 states were enrolled • 1,283 youth in the empirical studies • 4,847 youth in the field-based evaluations.

30. Participants • There were slightly more female (56.2%) than males (43.8%). • The overall daily mean smoking rate was 14.2 cigarettes per day. • Youth ranged in age from 12 to 19 years, with a mean age of 16.0 years. • The grade levels ranged from 7th grade to 12th grader (98% were in 9th-12th grade). • Nearly 76% of the participants were Caucasian, 12.6% Hispanic, and 3.4 %African American.

31. N-O-T Small (< 10) same-gender groups Led by same-gender facilitator Core program includes 10 hour-long sessions 4 booster sessions occurring at 2- to 4-week intervals post program BI 5-10 minutes scripted quit smoking advice & self-help brochures Mixed-gender groups School personnel assisted with BI recruitment and setup BI facilitators were ALA staff or volunteers Empirical Studies: Typical Design

32. Empirical Studies: Typical Design Within each year, 10 N-O-T schools were matched with 10 BI schools based on • community demographics of school locales • student population size • race and ethnic composition • student-teacher ratio • geographic location (urban, suburban, rural) • economic status of community/county of school locales • tobacco policy violation in previous year

33. Empirical Studies: Data Analyses N-O-T & BI Baseline comparisons on • age • grade level • nicotine dependence • number of cigarettes smoked per day on weekdays and weekends • age of smoking onset • motivation to quit smoking • confidence in quitting smoking

34. Empirical Studies: Data Analyses • Separate analyses for (1) males and females combined, and (2) males and females separately • Baseline comparisons within each year to check for biases due to attrition • Baseline comparisons using individual and school as units of analysis • Examination of quit and reduction rates

35. Empirical Studies: Quit Rates(Intent-to-treat sample) • The aggregated intent-to-treat quit rate for N-O-T was found to be approximately 14% compared to a BI quit rate of 7.9% (p < 0.01) • Results demonstrated that the adjusted odds of a N-O-T participant for quitting smoking were also nearly two times that of a BI participant (OR=1.79;p = 0.006)

36. Empirical Studies: Quit Rates(Compliant sub sample) • When the data for all six empirical studies were combined, the compliant quit rate for N-O-T was found to be approximately 19% compared to a BI quit rate of 9% (p < 0.01). • Results demonstrated that the adjusted odds of a N-O-T participant quitting smoking were nearly twice that of a BI participant (OR=1.94; p = 0.002).

37. Field-based Evaluations • Number of field-based evaluations - 10 • No rigorous comparison or control groups. • The real-world evaluations followed a single group pre/post design, as recommended in the N-O-T curriculum.

38. Field-Based Studies: Methods of Site Selection • Based on convenience sampling per ALA general requirement. • Across evaluations, 401 schools participated from 3 states.

39. Field-Based Evaluations: Quit Rates • When the data for all the ten field-based studies were combined • the overall N-O-T quit rate was 31% (compliant subsample) • And 26% (intent to treat)

40. Other Independent Evaluations • Between 2002-2004, three independent N-O-T evaluations were conducted in Illinois (University of Chicago), Virginia (Virginia Commonwealth University), and Wisconsin (Pacific Institute of Research and Evaluation). • Virginia demonstrated the highest quit rates with 43% of teens reporting quitting smoking. • The bio chemically-validated quit rate for Wisconsin N-O-T youth was 23% compared to 7% of BI comparison youth. • Using a GRT design, Illinois N-O-T youth had the lowest end-of-program quit rate (16%), but when participants were contacted for 3-month follow-up, quit rates had risen to 26%. • All studies reported reduction rates (for participants who did not quit smoking) of between 70-80%.

41. Research Conclusion Research from the WVU PRC as well as others shows that teens who participate N-O-T positively change smoking behaviors. These results suggest that N-O-T is an effective teen smoking cessation option.

42. Our Impact in WV… • Since the widespread implementation of the school anti tobacco policy and N-O-T cessation programming in 1998, WV has seen a 20.1% drop in youth smoking. • To illustrate, the teen smoking rate in WV has dropped from 43% to 27% in the past 7 years. • N-O-T is available in almost every high school in WV and many community centers. • Over 800 N-O-T facilitators have been trained in WV.

43. Historical reductions in smoking among WV youth

44. Our Impact Across the Nation • Between 150,000 and 200,000 US teens received the N-O-T program between 1998-2005. Most commonly used program in the country. • About 1 in 5 of these youths have quit. • Even among participants who do not quit, the majority reduce smoking. • Students consistently report that the curriculum also helps them improve other life skills (e.g., increased physical activity, better nutrition, improved stress management).

45. National Recognition for N-O-T • Several Federal organizations have recognized N-O-T • SAMSHA Model Program • ALA Best Practice • CDC Award for Research Innovation (1st 20 years of the PRC Program) • NCI Research Tested Intervention Program • Office of Juvenile Justice and Delinquency Prevention Model Program • Only teen smoking cessation program in the world identified as promising in a 2007 Cochrane Review (Grimshaw, G.M., & Stanton, A. Tobacco cessation interventions for young people. Cochrane Database of Systematic Reviews, 2006, Issue 4. Art. No.: CD003289. DOI: 10.1002/14651858.CD003289.pub4. • Most widely used program in the nation (Curry, S.J., Emery, S., Sporer, A.K., Mermelstein, R., Flay, B.R., & Berbaum, M. (2007). A national survey of teen smoking cessation programs. American Journal of Public Health, 207, 171-177).

46. National Dissemination of N-O-T Enhancing Evidence-based Practice

47. Working Together to Get the Word Out There • Deciding when to move from research to practice • Translating the intervention into a practitioner-friendly format • Developing a strategy/Dissemination was never an after thought • Evaluating dissemination effectiveness • Creating favorable climates and infrastructures for adoption and institutionalization • Assessing consequences and impact

48. Dissemination of N-O-T • N-O-T has been “designed for dissemination” • Dissemination has been theory driven • Rogers’ Diffusion of Innovations • RE-AIM Framework • Stakeholder collaboration critical for dissemination • ALA oversees training • WVU oversees evaluation • In WV, WVDE promotes program and WV DTP funds implementation and dissemination research

49. N-O-T Dissemination • Between 150,000 and 200,000 US teens have already received N-O-T • Used in Canada and US Army bases in Europe • Most widely used program in the nation • Spanish version available

50. The RE-AIM* Framework and N-O-T • Reach • Effectiveness • Implementation • Adoption • Maintenance *Glasgow, R. E., Lichenstein, E., & Marcus, A. C. (2003). Why don’t we see more translation of health promotion research to practice? Rethinking the efficacy-effectiveness transition. American Journal of Public Health, 93(8), 1261-1267.