International AIDS Conference Washington, DC July 22-27, 2012 L. Nyrobi N. Moss, MBA, MA SisterLove Inc., Atlanta, GA

1. Yes We Can! Demonstrating the Capacity of Community-Based Organizations to Create, Implement and Evaluate Evidence-based, Effective Behavioral interventions through the example of Healthy Love. International AIDS Conference Washington, DC July 22-27, 2012 L. Nyrobi N. Moss, MBA, MA SisterLove Inc., Atlanta, GA

2. SisterLove, Inc. HerStory A Reproductive Justice Organization for Women, with a Focus on HIV/AIDSProviding Innovative Services in Support of Women's Education, Empowerment, Wellness and Rights Since 1989 SisterLove, Inc., founded in July of 1989, can trace its beginnings to a volunteer group of women interested in educating Atlanta, and especially communities of women, about AIDS prevention, self-help and safer sex techniques.

3. SisterLove is on a mission to eradicate the impact of HIV/AIDS and other reproductive health challenges upon women and their families through education, prevention, support and human rights advocacy in the United States and around the world.

4. Organizational Structure • Board of Directors: 11 Total • 3 HIV+ Women, 3 HIV+ Men • HIV+ Peers – 3 paid, 5 volunteer • Staff – U.S.: 8 FT, 4 PT & 4 Interns – • S.A.: 1 FT

5. Org. Structure cont. • Two offices: Atlanta, Georgia and Witbank, Mpumalanga-South Africa • Annual Budget – approximately $1,021,961 • Clients served in 2011: 5,000 High-Risk negative individuals & 250 HIV+ individuals

6. Current Programs Health Education • Healthy Love Party • HIV/AIDS Prevention Education and Risk Reduction Project • Community Outreach • Community PROMISE Prevention Program • Free rapid HIV Testing and Counseling • Free Chlamydia and Gonorrhea Screening • Sexual Safety Risk Reduction Planning/Counseling

7. Current Programs cont. Advocacy • 20/20 Leading Women’s Society • Everyone Has A Story: Survival and Leadership • The Black Treatment Advocates Network (BTAN) Bridge Leadership Program • SisterSong: Women of Color Reproductive Health Collective • Community on Campus Project • Collaborations and Partnerships

8. Current Programs cont. CareWorks Volunteer Program • MPH Practicum Interns • Undergraduate College Students • Morehouse College Project IMHOTEP Placement • Community Volunteers International Programs • Thembuhlelo HIV/AIDS Capacity Building Project (HCBP) • Women’s HIV/AIDS Resources Project (WHARP)

9. SisterLove: a small organization doing BIG things!

10. From Then… The History of HIV, Women of Color and Prevention Education

11. Background • Black women are greatly affected by the HIV/AIDS epidemic in the US • In 2007, black female adults and adolescents represented 12.8% of the US female population, but accounted for 61% of all females living with HIV/AIDS (CDC, 2009) • 1 black woman in 30 is expected to be diagnosed with HIV during her lifetime (Hall et al., 2008) • In 2004, HIV was the leading cause of death among black women aged 25 to 34 years

12. Background (continued) • Black women in the South: • Georgia had the 8th highest number of cumulative AIDS cases in the US through 2006 • Black women accounted for 84% of all women in Georgia who were diagnosed with AIDS from 1981-2006 • For majority of black women, source of HIV infection is unprotected sex with infected male partner

13. Other risk factors for African American women • Lack of awareness of HIV serostatus • Sexually Transmitted Diseases • Socioeconomic factors • Poverty • Limited access to quality health care

14. Impact of AIDS Epidemic

15. Impact of AIDS Epidemic

16. Available HIV Prevention Interventions for Black Women • Only one intervention is currently disseminated with CDC support for the general population of black women • i.e., Black women who are not members of a specific at-risk group • Urgent need for additional innovative efficacious approaches to HIV prevention designed by and for black women

17. To Now… Innovative Solutions

18. What SisterLove Knew: 1. The increase in HIV/AIDS, especially among African American women in the South, called for the urgent development of innovative interventions for this population 2. The most effective approaches to impacting change in communities of women are those that are respectful of women’s abilities to empower themselves.

19. The Healthy Love Party Workshop SisterLove Inc. responded by developing the Healthy Love Party: The Healthy Love Party Workshop (HLPW) is an engaging, highly interactive group-level intervention for women at risk for HIV/AIDS. HLPW reflects the belief that black women’s collective wisdom and lived experiences provide important learning opportunities, and encourages them to demand safer sexual behaviors for themselves and their partners.

20. The Healthy Love Party Workshop • HLW offers a safe environment where women can learn about: • Modes of HIV transmission • Effective strategies for reducing one’s risk • Opportunities for developing skills for personal risk assessment and risk reduction • Developing awareness of personal factors and social norms that affect relationships, sexual decision-making, and ultimately behavior change

21. Why is the HLPW an Innovative Intervention? • Grassroots origin • Community-focused and responsive • Makes ‘house calls’ • Participants choose the location; intact groups • Style of delivery • Dynamic facilitators/presentation • Addresses women’s reproductive and sexual health and human rights issues • Eroticizes safer sex

22. The three intervention modules Setting the Tone, TheFacts, and Safer Sex of the HLPW address the shared, cultural aspects of women’s experiences that can shape their social vulnerability and HIV risks include a keen sensitivity to women’s unequal treatment and status as females.

23. How is the HLW delivered? • Single-session intervention workshop • 3 to 4 hours • Group level intervention • (e.g. sororities, friends, church groups) • HIV/AIDS Risk assessment • Pre - and immediate post-workshop surveys

24. Expected Outcomes of the HLW • To decrease HIV risk behavior by: • Increasing consistent use of condoms or other latex barriers, for anal, vaginal and oral sex with main and casual partners • Reducing the number of sex partners • Increasing sexual abstinence, and • Increasing the number of persons taking an HIV test and getting their test results

25. And Beyond… Healthy Love and the DEBI Journey

26. Healthy Love Timeline 1989: SisterLove Inc. developed the HEALTHY LOVE PARTY WORKSHOP! 2004: The Centers for Disease Control (CDC) selected SisterLove’s HEALTHY LOVE workshop to be formally evaluated for its innovation and effectiveness.

27. Healthy Love Timeline cont. 2006: Between March 2006 and June 2007, with the support of the CDC’s Innovative Interventions Project, SisterLove evaluated the efficacy of Healthy Love. 2009: HEALTHY LOVE was determined to be an innovative group-level HIV prevention program and was selected for inclusion in the National Compendium of Effective Evidence-Based Behavioral Interventions.

28. Healthy Love Timeline cont. 2011: The CDC’s Replicating Effective Programs (REP) project selected the HEALTHY LOVE intervention to undergo its Diffusion of Effective Behavioral Interventions (DEBI) project, wherein HEALTHY LOVE is being packaged into a set of user-friendly materials for future use by AIDS service and community-based organizations.

29. YES WE DID! SisterLove Implementation and Evaluation Model

30. The Model • Have an innovative product that answers the needs of your community • Design a Plan to prove that your product works

31. Healthy Love vs. HIV 101 • Expected behavioral outcomes (Healthy Love) • ↑ consistent condom use during vaginal sex, abstinence, & HIV testing and receipt of results • ↓ unprotected vaginal sex & number of male sex partners • Comparison Workshop (HIV101) • Single-session & didactic • Provided same HIV/STI factual information as HLW

32. The Model • Plan Ahead • Agency/Staff Readiness • Can we afford this? • Who is going to implement this program? • Compile resources • How do we incorporate into current funding? • Outside evaluator • Community Advisory Board Members

33. The Model • Marketing and Recruitment • Community Collaborations/Stakeholders • Participants • E-Marketing

34. Recruitment

35. Recruitment

36. The Model IV. Implementation • Base sample group • Groups with different characteristics.

37. Methods • Pre-existing groups of women recruited from community venues • Eligibility criteria: • Women • Black (i.e., African American, African or Caribbean) • Age 18+ years • Not pregnant or planning to become pregnant • No religious beliefs that prohibited use of condoms • No participation in group HIV prevention intervention in past 6 months

38. Baseline Demographics (N = 313) • 96% Black, 4% Bi-racial/other • 90% US-born; 6% African, 3% Caribbean • 69% single/never married; 16% married; 15% separated/divorced/widowed • 38% completed high school only; 54% with college degree • 33% employed full-time

39. Methods (continued) • 2-step screening process • Group eligibility • Individual eligibility • Groups matched by type (e.g., sorority, church) & then randomized: • Healthy Love Workshop (HLW)  15 groups (163 women) • Comparison HIV101 Workshop  15 groups (150 women) • Both workshops • Delivered by black female health educators • Provided safer sex supplies & referrals

40. Evaluation Design • Random assignment of groups • Intervention (HLW) • 14 groups, 163 women • Comparison (HIV 101) • 14 groups, 150 women • Data Collection Points • Pre- and immediate post workshop • 3- and 6-month follow-up • Focus Groups • HLW participants only • Participants recruited from various types of groups (e.g., sororities, friendship, church, etc.)

41. The Model • RECORD, RECORD, RECORD • Collect extensive data that measures success • Compile data into easily accessible, useable reports

42. PROGRAM EVALUATION DATA COLLECTION – • Event reports, participant sign-in sheets, workshop participant evaluations • Documentation collected and complied per event by project facilitators • Monthly, quarterly, and annual reports complied by Program Director

43. Retention Participant Retention • Intervention • 72 % retained at 3 months • 74 % retained at 6 months • Comparison • 75 % retained at 3 months • 76% retained at 6 months

44. Outcome Analysis • Participants in the study group were found to have greater improvements in: • Condom-use self-efficacy • Attitudes towards condom use • HIV knowledge HEALTHY LOVE was determined to be effective in reducing risk-taking behaviors; reducing numbers of sexual partners; increasing condom use; and increasing testing with results among Black women and men.

45. Evaluation • Qualitative and quantitative data on program activities and accomplishments • Results used for: Annual reporting Program development Program monitoring Program evaluation Program analysis Requests for Proposals

46. Building CBO Evaluation CapacityChallenges & Lessons Learned

47. Challenges • Staff involvement in planning process • Staff reluctant to participate: “Health educators were initially reluctant to participate in the development of the protocol ... They did not understand the complex needs of the evaluation process and regarded the planning process as something for the managers to do.” Feedback from staff member

48. Challenges • Negative attitudes towards evaluation • Staff fearful that evaluation focused on their performance rather than on intervention • Staff perception of being micromanaged: • Need to ‘follow CDC guidelines’ or lose funding • Resistance to standardized intervention delivery • Fear of not having the freedom to be ourselves in order to respond to the needs of each group • “It’s too formal, it’s no longer a party but a workshop”

49. Challenges • Burden of evaluation on existing programs • SisterLove perspective • Limited resources for dealing with increased work load • How to maintain innovative nature of HLW while using standardized delivery • Consumer/participant perspective • Unable to obtain routine services due to staff’s commitment to evaluation project • Frustration with SisterLove due to changes in HLW delivery • eligibility criteria • random assignment • time commitment

50. Challenges • CBO capacity • Lack of behavioral scientist or evaluator on staff • Need to hire external consultant • Length of time to develop protocol and data collection tools • Lack of in-house IRB to review protocols • Limited staff to support evaluation project • Labor intensive process • Recruitment, retention, data collection, data entry, follow-up