Seeding Research: Sprouting Change

1. Seeding Research:Sprouting Change Sarah Flicker Director of Research March 30, 2006

2. A bit about me • Born & bred in Montreal • Medical Anthropology (BA, Brown U) • Epidemiology & Maternal and Child Health (MPH, UC Berkeley) • Social Science and Health (PhD, U of Toronto) • Director of Research, Wellesley Central

4. Capacity Building Initiatives • CBR: Certificate Program • Leadership Capacity Building: Certificate Program • WC-Maytree: Public Policy Training Institute

5. Enabling Grants Up to 10K Start-up funding “The biggest outcome was that we found out that the community did not want what we thought they wanted.” Advanced Grants Up to 80K over 2 years Operational funding “We are incredibly lucky that we have an academic who very much supports the work that we're doing and doesn't have an ego and you know, it's just amazing and very helpful. … He's got kind of his own research going on, but … he supports, you know, community-based research.” Wellesley Central Grants

6. Enabling Outcomes • Anticipated: completed literature reviews, developing research questions and applying for research funding. Many grantees were successful in leveraging new research and program dollars. • Unanticipated outcomes: finding new and unexpected research and program partners, developing new advocacy networks & engaging on a new level with policy makers.

7. Advanced Outcomes • Anticipated: Developing new partnerships; building new skills and capacities; developing best practice model resources and communication materials; making policy and program changes; and, attracting the attention of key stakeholders, including politicians, decision makers and the media. • Unanticipated outcomes: building strong partnerships with community agencies and members; building strong linkages between agencies; connecting individuals with resources in the community; engaging community members in research; sharing research with other agencies; and, learning more about research processes and practicing reflexivity. • Challenges: difficulty building and sustaining strong partnerships, finding appropriate funding and trouble with dissemination and knowledge transfer.

8. Ottawa Charter for Health Promotion, 1986 • “the process of enabling people to increase control over, and to improve, their health” • Macro  Meso  Micro • E.g. health communication, education, self-help/mutual aid, organizational change, community development and mobilization, policy development, advocacy & research

9. Common Problems in Traditional Research • Irrelevance or insensitivity to community • Research is not giving back • Communities feel over researched • Communities feel coerced • Direct benefits to community are minimal

10. CBPR • “CBPR 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” • Israel et al, 1998

11. AHRQ Report:CBPR: Assessing the EvidenceJuly 2004www.ahrq.gov/clinic/evrptpdfs.htm • 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?

12. Bottom Line: “High quality research and intense community involvement are not contrary to each other.”

13. CBPR: Why Now?

14. CBR in Canada… • Flicker & Savan, 2005 • Characterize CBR in Canada • Explore relevant CBR barriers and facilitators and possibilities for change • Advocate for creating more CBR-friendly policies in the academy, community and funding programs

15. I. Methodology • Extensive literature review of facilitators and barriers to CBPR • Individual interviews with key CBPR practitioners • Advisory committee of leading CBPR practitioners from North America • Online survey of a wide cross-section of those involved in CBPR in Canada (n=308) • Three focus groups of interested practitioners (Sept.’05)

16. Sample Characteristics (n=308)

17. II. What resources are they working with? Budget Duration

18. III. Involvement Involvement in the CBPR Research Process

19. IV. CBPR as an Effective Tool • The rate at which respondents cited ‘negative’ outcomes was far lower than that for ‘positive’ outcomes Outcomes Outputs

20. V. Facilitating CBPR Facilitator Importance

21. VI. Barriers to CBPR Barrier Importance

22. Bottom line • CBPR is an effective strategy – but special attention needs to be paid to minimizing barriers and maximizing facilitators in order to support this approach to research.

23. Positive Youth Project • Our goal is to improve the lives of young people living with HIV, in Canada and beyond.

24. Background • 11.8 million youth (15-24) live with HIV/AIDS; 1/2 of all new HIV infections occur among youth. • As of June 2004, 15,000 youth and young adults under the age of 29 had tested positive for HIV in Canada • HIV-positive youth experience multiple forms of disadvantage. • yPHAs have a wide range of specific service needs. • There is a profound lack of resources for HIV-positive youth in Canadian urban centres.

25. ACCESS AIDS Network Sudbury AIDS Committee of Newfoundland & Labrador AIDS Committee of Simcoe AIDS Committee of Toronto AIDS Thunder Bay Asian Community AIDS Services Canadian Aboriginal AIDS Network Canadian AIDS Society Canadian AIDS Treatment Information Exchange (CATIE) Canadian Foundation for AIDS Research Children's Hospital of Eastern Ontario (CHEO) Fusion Studios Inc. HIV Society North JASE Les Enfants de Béthanie Ontario AIDS Network Ontario HIV Treatment Network Pauktuutit Planned Parenthood of Toronto Positive Youth Outreach Somerset West Community Health Centre TeenNet, University of Toronto Teresa Group The Hospital for Sick Children Voices for Positive Women Wellesley Central Youth Advisors YouthCo Youthlink City Project Partners

26. Methods • We interviewed 70 diverse HIV positive youth (12-24) across Canada and held telefocus groups with 30 service providers to uncover: • How can we better support HIV-positive youth?

27. Youth-led methodology • Setting the research agenda • Designing the questions • Designing the protocol • Analysis • Dissemination

28. Major Themes: Isolation & Stigma • ASOs are not seen as youth-friendly institutions. “The atmosphere was not good. It looked too… like it was for sick people. … It was just not a good atmosphere. The colors of the walls were awful, people were grumpy...” • YSOs are not seen as HIV-friendly institutions. • “I can’t go to E-- and talk to youth there though because some have it and some don’t, you don’t know who does, everyone is quiet about it, you know what I mean…” • New models of collaboration are necessary to reach HIV positive youth.“Like maybe have a youth drop in centre where its just like people with HIV especially coming down and then they can just talk about whatever and they can just hang out because they’re one of them …”

29. Major Themes: Isolation & Stigma

30. Major Themes: Treatment Confusion • Why take treatment if it can’t cure? • What are the different options? • What are the different side effects? • How can I afford them? • What impact will they have on my life? • How come I can’t just stop and start when I want?

31. Major Themes: Treatment Confusion

32. Major Themes: Internet • high rates of Internet use & access, especially among most impoverished youth; • issues around public and private terminals; • youth use the Internet primarily for communication and entertainment; • health information seeking behavior is rare; and • youth want “one-stop shopping” from an e-health site. •  The Internet may be a viable way to impart ‘youth friendly’ health information: anonymous, confidential, interactive, 24 hour access, connectivity

33. Major Themes: Internet

34. What is HIV? How does it work? Coinfections Medication & Treatment How will HIV change my life? Disclosure? Choosing a doc Adjusting to the news Living well Pregnancy Getting good help More Results - questions

35. Taking Action • www.livepositive.ca - a bilingual resource was developed for HIV-positive youth and ASO’s.

41. Actions to date • Revitalization of the national “children, youth and families HIV network” • Trained a group of local HIV-positive youth and agency service providers to become co-researchers • Developed workshop templates to be used nationally by CATIE to address youth treatment needs • Hosted Canada’s largest youth & HIV roundtable • Developed youth-lead training modules for ASOs and YSOs seeking to become more youth/HIV friendly • Advised key local and national funders and institutions regarding youth needs and treatment issues • Conducted, presented and facilitated numerous academic and lay presentations regarding our research findings and process • Published 4 peer-review papers and 4 youth zines • Developed bilingual Web site, www.livepositive.ca / www.viepositive.ca

42. Contributions to CBPR

43. Benefits CBPR research skills, being heard and feeling useful new information, new opportunities financial remuneration Youth mentorship opportunities new programs & services for youth new networks new skills mutual learning ‘the research itself’ Community Based Organizations Academic Researchers grants, tenure, promotion access to new communities, ‘cultural competence’ better data & interpretation new dissemination outlets research skills, credibility, new partners, new programs, data for advocacy personal career advancement

44. Youth: Strong dose – response! • Just coming to be a part of something was… good for me...I think helping out on a research project, well for me anyway, like makes me feel like I've done something, you know, and that's good for me. You know, maybe I didn't do a lot of stuff, you know, but I did something, you know. Do the best I could and I try. (youth, b) • The way I put my vigour into it, it took up a lot of my energy...But it took up my energy in a very good way. It gave me something to do and I felt like it was like a part-time job. So it wasn't overwhelming. It wasn't too much. (youth, a) • Ah, like it gave me renewed sense of purpose that I'm doing something good; that I'm not only helping myself but I'm helping others and I guess you can say it gives you that warm, fuzzy feeling…It made me feel useful. That was something since being diagnosed that I couldn't feel… I looked forward to the meetings that we had every Tuesday, not so much for the pizza or the money; it was, uh, it felt like I was contributing to a team again. (youth, f)

45. Another beneficiary… The research itself • Better Questions. • Better Recruitment. • Better Data Collection. • Better Analysis. • Better Dissemination. • Better Action.

46. More Critical Concerns

47. Some advice on collaborating with youth… • Go where the youth are. • Be yourself: be honest. • Build incentives to participation into your grants. • Respect difference and diversity. • Be clear about your limits. • Provide training and support, be patient, and then raise the bar. • Research is only one small part of the solution. • Where there is power inequity, adopt a 2:1 rule. • Empowerment can be a double-edged sword. • Find Supportive Environments.

49. Questions, comments • Sarah Flicker, PhD • Director of Research • Wellesley Central Health Corporation • 45 Charles Street E, Suite 101 • Toronto, ON M4Y 1S2 • phone: 416 972-1010 X 225 • fax: 416-921-7228 • www.livepositive.ca or www.viepositive.ca