Engaging House Ball Communities Utilizing Culturally Appropriate Methods


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Engaging House Ball Communities Utilizing Culturally Appropriate Methods

  1. 1. Engaging House Ball Communities Utilizing Culturally Appropriate Methods Third Thursdays Webinar July 18, 2013 Hosted by Maria Sipin, SYPP Center Stephaun E. Wallace, MS Project Manager, Legacy Project For audio: Please dial 866-740-1260 pass code 3613106
  2. 2. Announcements  Recording & slides  Certificate of Participation  Brief survey for a chance to win a SYPP Center care package  Participate  Ask questions  Share comments  E-mail us later
  3. 3. Engaging House Ball Communities Utilizing Culturally Appropriate Methods Stephaun E. Wallace, MS Project Manager, Legacy Project July 18, 2013
  4. 4. Overview ■ Legacy Project Mission/Background ■ What is the House/Ball Community? ■ Project VOGUE ■ National House Ball Coalition ■ Summary/Next Steps ■ Questions
  6. 6. Legacy Project Mission: The Legacy Project’s mission is to build trust and collaboration among researchers, research institutions and historically underrepresented communities most impacted by the domestic HIV epidemic; to enhance cultural competence; and to initiate scientific investigation to increase clinical research participation. Focus Areas: ■ Research ■ Capacity Building & Technical Assistance ■ Engagement & Collaboration
  7. 7. Legacy Project Overview ■ Formed in 2005 under the HIV Vaccine Trials Network (HVTN) to raise the participation of Blacks and Latinos in clinical trials in the U.S. ■ Expanded in 2008 to include all six networks, both prevention and therapeutic, funded by the National Institutes of Health (NIH)
  8. 8. The Expansion: HANC Legacy Project NIAID HIV/AIDS Clinical Trials Networks HIV/AIDS Network Coordination (HANC) is a project that works with the six NIAID HIV/AIDS Clinical Trials Networks funded by NIAID with the intent of creating a more integrated, collaborative and flexible research structure.
  10. 10. House/Ball Community Profile ■ Predominately African American and Latino YMSM, MSM and transgender persons (male to female); emerging pockets of women/WSW and transgender persons (female to male) ■ Ages 14-40; with a median age of 22 ■ Increased risk for HIV ■ Ball events are held in major US Cities and parts of Canada; recent events in Europe ■ More than 50 organized houses nationally ■ HIV prevention interventions have not specifically targeted this population ■ There isn’t a focused effort to increase education and awareness within the House/ball community around HIV vaccine clinical trials or other biomedical research ■ Kiki and WBT scenes emerging
  11. 11. The House/Ball Community ■ Social “Houses” are structured with heads of a house who are referred to as the ‘Mother’ and ‘Father’, without regard to gender or age. ■ Most members of this population are between the ages of 14 and 29 years old, with its leaders, within the same age group or older. ■ Houses originated and have been in existence since the Harlem Renaissance, and are modeled after a range of organizational structures with membership either being through invitation or solicitation. ■ Houses are as diverse as the organization structures they model – Fraternities – Clubs – Nuclear families – Corporations
  12. 12. The House/Ball Community ■ Balls are celebrations of characteristics or talents that might otherwise go unnoticed in the mainstream: an underground network that continues to flourish, immortalizing its own "stars". ■ Ball (or Ballroom) participants consist of predominantly African American and Latino gay social House members who gather at events where they compete in a variety of categories (fashion, beauty, performance, etc.). ■ It’s estimated that most of the Ball participants are members of a “House”. ■ The event attendees are more diverse and include non-House members, non-gay identified MSM, MSMW, and women. ■ Unfortunately, along with acceptance and building of self-esteem that comes from the sense of belonging to a family, this sub-culture is greatly associated with back-alley surgeries and silicone injections, prostitution, drug use, identity theft, violence, depression, and sex in exchange for drugs or money.
  13. 13. The House/Ball Community ■ Primary and secondary prevention interventions tailored for young MSMs continue to be needed to reduce both STD and HIV risk. ■ Utilization of the existing social network structures of “Houses” may be a viable avenue to reach young MSM, their sexual partners, as well as non-House members who may attend Ball events, but are a part of the social network that extends beyond the sub-population. ■ Formative research of the networks that are created and facilitated via “House” membership, affiliation, and/or events would aid in developing both primary and secondary intervention options for young MSMs, and their network members. ■ Investigation of cross-country connections may reveal a “meta-structure” that could serve as an avenue for interventions beyond individual and small group level (e.g., community awareness campaigns, diffusion of innovation models).
  15. 15. THE WNY House/Ball Community ■ Little is known of the specific social network structure of “Houses” outside of New York City and other major metropolitan areas. ■ Even less is known of the Houses in Western New York and its near-by rural communities. ■ However, the hierarchies of respect and the relatively stable structure of Houses present a unique point at which we might engage this population with HIV prevention interventions for young MSM of color. ■ This sub-population of young MSM of color are also frequently found to have high STD and HIV prevalence. ■ Our need to fully comprehend environmental and social factors that influence the growing “House” familial structure in Western New York is therefore the focus of the proposed investigation.
  16. 16. Project VOGUE ■ Project VOGUE will offer group level intervention to counter the threat of HIV/AIDS infection among the House community in Western NY and raise awareness about HIV vaccine research. ■ Specifically targeting transgender and young men who have sex with men (YMSM) of color. ■ The intervention will take place as a series of workshops that will educate members of the House population about a range of health, behavioral and socioeconomic issues, with the ultimate goal of providing effective harm-reduction strategies to help individuals protect themselves against HIV/STD infection and further spread of the disease and raise awareness about HIV vaccine research. ■ The project will be multi-leveled and conducted in three phases. ■ The programs developed through this project will be informed by community based participatory research techniques, culturally appropriate and specifically designed for use with African-American and Latino MSM as well as transgender persons. ■ The project has been officially named Project VOGUE and there is one overarching goal for this project and three specific aims:
  17. 17. Project VOGUE ■ The overarching goal of this pilot project is to increase the participation of MSM of color (African-American and Latino) in HVTN clinical trials. ■ The specific aims of this project are: Aim #1: To conduct a HIV/AIDS and HIV vaccine research awareness needs assessment among members/affiliates of the house ball community. Aim #2: To develop and implement a group level workshop intervention to counter the threat of HIV/AIDS and raise awareness about HIV vaccine research among those in the house ball community. Aim #3: To assess the applicability of a potential model to reach and increase the inclusion of highly at risk sub-populations of MSM of color (Members of the House/Ball community) in HIV vaccine trial research initiatives.
  18. 18. Project VOGUE ■ Output for Aim #1: A completed needs assessment document focused on members of the house ball community articulating their HIV/AIDS and HIV vaccine trial awareness needs. ■ Activities related to accomplishing Aim #1: 1. Conduct face to face qualitative interviews with MSM of color key informants representative of the house ball community. 2. Conduct focus groups with MSM of color key informants representative of the house ball community. 3. Develop and tailor the necessary research instruments (Demographic questionnaire, HIV knowledge questionnaire, Knowledge Attitude Behavior Survey, Semi-structured interview guide, and the HIV Vaccine Trial Attitudes and Beliefs Survey) that will collect key variables of interest related to this project, specifically uncovering the social determinates that lead to HIV acquisition or perpetuate continued mistrust of clinical trials vaccine research.
  19. 19. Project VOGUE ■ Output for Aim #2: A completed manual of the group level sessions developed and implemented to counter the threat of HIV/AIDS and raise the awareness of HIV vaccine research for those in the house ball community. ■ Activities related to accomplishing Aim #2: 1. Implement the recruitment plan for the study to reach the target numbers of key informants needed to conduct the study. 2. Conduct and analyze data from the face to face interviews focus groups and group observations. 3. Generate HIV/AIDS and HIV vaccine trial topics for inclusion in the group level sessions. 4. Convene monthly meetings of the House of Council advisory group.
  20. 20. Project Vogue ■ Output for Aim #3: A completed evaluation report focused on the outcomes and applicability of the model project developed to increase the inclusion of house ball community members in HIV vaccine trial research initiatives. ■ Activities related to accomplishing Aim #3: 1. Develop an evaluation plan that will include a system to track all of the research activities of this pilot project. 2. Submit, obtain, and maintain institutional review board approval for all research related activities of this project. 3. Conduct data analysis at various points throughout the study as appropriate using the approved techniques and approaches as planned.
  21. 21. What is Project VOGUE? VOGUE Intervention ■ 6 session HIV prevention intervention ■ Reduce stigma about clinical research ■ Increase relationships between house/ball & HVTU site The combination of these two (2) separate, yet interconnected components comprise Project VOGUE. WNY Council of Houses ■ Serves as governance body ■ Provides ongoing peer support ■ Provides feedback to HVTU and research teams ■ Plans engagement programs/event
  22. 22. VOGUE Intervention Curriculum ■ Session 1  What does it mean to be a part of the house/ball community? ■ Session 2  Crafting an Agenda of Emotional Safety ■ Session 3  HIV/STI 101 ■ Session 4  Understanding HIV Vaccine Research ■ Session 5  Presentations (Community Change Projects) ■ Session 6  Optional Clinical Site Field Trip & Graduation
  23. 23. Council of Houses (COH) ■ Composed of various houses: – Akachi, Anyae, Balenciaga, Blahnik, Boyette, Dereon, Diamany, Doll, Dynastii, Ebony, Empire, Evisu, Infiniti, Khan, Labella Mafia, Legacy, Marc Jacobs, Maserati, Mizrahi, Ninja, Ovahness, Paciotti, Playboy-Bunny, Prodigy, Revlon, Talon, Warriors
  24. 24. COH Leader Profile Age Gender Sexual Orientation HIV Status Marital Status Race M = 25.8 < 25 = 10 (67%) > 25 = 5 (33%) Male = 11 (73%) Female= 2 (13%) Trans = 2 (13%) Homo = 13 (87%) Bi = 2 (13%) Neg = 12 (80%) Pos = 3 (20%) Single = 10 (67%) Married = 1 (.06%) Partner = 4 (27%) AA = 12 (80%) Latino = 2 (13%) Other = 1 (.06%)
  25. 25. COH Functions ■ Advisory expert panel for Project VOGUE ■ Met 1 – 2 Times a month ■ Compensation: $25 Walmart Gift card/meeting – Food during the meetings ■ Conduct other business on behalf of house ball community – Plan Balls, Resolve conflicts, Educational programming
  26. 26. Some Project VOGUE Conclusions • CBPR research principles proved effective in working with the COH and house ball community • A new 6-session curriculum was developed that the community is invested in • Engaging the COH from the beginning was pivotal in getting buy-in and building trust among the target population • Supporting the COH social networking activities fostered further collaboration • Collaborative partnerships between researchers, community- based organizations and at-risk MSM populations should be established and strongly encouraged
  27. 27. Research Team ■ The team will be comprised of a very experienced interdisciplinary collaborative research team from the University of Rochester (Medical Center and School of Nursing) and the MOCHA Center, Inc. Principal Investigator Michael C. Keefer MD, Professor of Medicine, Director of CRS, University of Rochester Medical Center Co-Principal Investigator Sheldon D. Fields PhD, RN, FNP-BC, AACRN, FNAP, FAANP, Associate Professor of Nursing, University of Rochester – School of Nursing Damon L. Humes MHS, Executive Director, The MOCHA Center, Inc. Project Director/Co-Investigator Stephaun E. Wallace, MS, MOL, Director of Programs, Research and Evaluation, The MOCHA Center, Inc. Sub-investigator Catherine A. Bunce RN, MS, CCRC, CRS Clinic Coordinator, University of Rochester Medical Center
  29. 29. Legacy Project’s Long Term Goal: Impact How HIV Clinical Research is Conducted ■ Community Engagement ■ Science that identifies impact of historic disparities on research ■ Increased cultural responsiveness to target populations ■ Improve scientific literacy in the most impacted communities ■ Informed communities
  30. 30. Improvements the HIV Scientific Research Community Needs to Make  Translate clinical research process & science to communities  Relate to human beings and the complexities of their everyday lives  Build trust with communities to overcome past historical abuses  Engage underrepresented yet disproportionately impacted communities in research  Involve community members in every aspect of planning, outreach and data analysis of research studies  “Helicopter Effect”/”Booty Call Effect”: Invest in communities for the long term; rethink & challenge how research studies are funded
  31. 31. House/Ball Community Change Consultation Planning & Collaboration: – Formed an Advisory Group comprised of subject matter experts and leaders from the HBC to guide agenda development and evaluation – Collaborated with Marne Castillo from the Adolescent’s Trial and Medicine Network (ATN) to gather behavioral data and characteristics of the HBC – The Advisory Group informed and developed: ■ Demographic survey ■ Interview guides for focus group ■ Invitee list
  32. 32. House/Ball Community Change Consultation Overall Meeting Goal To convene a national meeting of key influencers from the House Ball community in order to formulate a national HIV clinical trials research agenda specifically focused on the House Ball community. Discussion Themes: ■ Barriers and Facilitators for Engaging the HBC in HIV Clinical Research ■ Emerging and Ongoing HIV Clinical Research Trends (in particular the activities of the Adolescents Trial Network (ATN)) ■ Short-, Medium- and Long-term Strategies for Engagement ■ Building a National House/Ball Coalition
  33. 33. House/Ball Community Change Consultation ■ April 27-29, 2012 in Washington, DC ■ 31 participants of various social statuses and scenes from the national House and Ball community, (including one member from Toronto) ■ Participants filled out surveys that asked about demographic characteristics of individuals and their houses, and also knowledge attitudes and beliefs about HIV clinical research ■ Participants were separated into focus groups to discuss short-, medium- and long-term strategies for engaging the HBC in HIV clinical research
  34. 34. Participant Demographics ■ Average age: 34.9 years ■ Average # Years in HBC: 14.7 ■ Most were male (74%), African American/Black (97%), gay-identified (64%), single (51%), employed full time (84%), and an income over $35,000 per year (71%)
  35. 35. Participant Demographics 9.7 35.5 6.5 29 12.9 6.5 Education High School Diploma or GED Some College Associates Degree 4 Year College Degree Master's Degree Doctorate/Medical/La w Degree
  36. 36. Awareness of HIV Clinical Modalities and Trials Clin. Res Vaccine Vaccine Trial HIV Txt HIV Txt Trial PrEP PrEP Trial Microb. Microb. Trial Ever Read or Heard about... Percent(%)Agree 020406080100 65.5 89.7 72.4 79.3 58.6 75.9 55.2 46.4 28.6
  37. 37. General attitudes about ethics, health, utility, and acceptability of trials
  38. 38. Attitudes and Awareness Vaccine Attitudes PrEP Attitudes Microbicide Attitudes Medication Attitudes Aware of Modality No 3.6 2.7 3.0 1.7 Yes 3.5 3.2 3.3 2.0 p-value 0.87 0.14 0.31 0.24 Aware of Trials No 3.7 2.8 3.0 1.8 Yes 3.5 3.3 3.4 2.1 p-value 0.35 0.05 0.05 0.17
  39. 39. Barriers for Engaging the HBC in HIV Clinical Research ■ Lack of access to info about clinical research ■ Helicopter Effect: short time frame; researchers popping in and out ■ Distrust: historical trauma; fear of medical community; negative impressions of research ■ Access to health care: cultural, economic, social ■ Myths ■ Lack of reciprocity: Fearful of participating and not receiving benefit from research (not financial/employment benefit, but personal and community benefit) ■ Uncertainty: screening & exclusion, side effects ■ Lack of leadership participation ■ Miscategorization of gender ■ Stigma
  40. 40. Facilitators for Engaging the HBC in HIV Clinical Research ■ Attend house/alliance/federation meetings & balls ■ Reciprocity: benefit is clear; results shared, practices transparent; research team accountable ■ Whole community engagement: within the HBC--leaders, linkers, gatekeepers ■ Access to culturally competent research staff: cultural competency with HBC, sexual/racial/ethnic diverse staff ■ Longer time frames ■ CBO bridge ■ Community Empowerment: HBC members feel ownership over the research process and outcome; capacity building ■ Simple language ■ Sex and gender positive practices
  41. 41. NEXT STEPS
  42. 42. Next Steps ■ Project VOGUE – Continue Abstracts – Publication Submission – Soliciting Funding for Continued Diffusion ■ National House Ball Coalition – Coalition Development – Work Plan and Program Implementation – Monitoring and Evaluation – Continue Abstracts – Publication Submission ■ USCA Conference Seminar: – Examining Effective Engagement Strategies to Reach MSM of Color – Wednesday, September 11, 8:30 am - 11:30 am
  43. 43. Legacy Project Initiatives & Programs ■ Native American Engagement in Clinical Research- A joint project with NNAAPC ■ Legacy Expanded Testing Initiative ■ Historical Black Colleges and Universities Collaboration ■ House/Ball National Coalition ■ National Community Consultation Series ■ Creating Awareness Through Art ■ Be The Generation Bridge- increase understanding and support for biomedical HIV prevention research
  44. 44. Advisory Committees & Working Groups ■ Legacy Project Advisory Group ■ Women’s HIV Research Collaborative ■ House/Ball National Coalition ■ Creating Awareness Through Art Advisory Committee ■ Legacy Project Working Group – Membership (subcommittee) – Research/Evaluation (subcommittee) – Engagement/Collaboration (subcommittee) – Capacity Building/Technical Assistance (subcommittee)
  45. 45. Thank you! ■ Project VOGUE Research Team ■ National House Ball Coalition Research Team ■ WNY Ballroom Community ■ MOCHA Center & Rochester Victory Alliance ■ HVTN Staff ■ REACH LA Staff ■ Legacy Project Staff ■ SYPP Center/CHLA Staff
  46. 46. Q&A / Discussion
  47. 47. Contact Information Stephaun E. Wallace, MS Project Manager, Legacy Project stephaun.elite@gmail.com 678-913-8629 Maria Sipin SYPP Center Children’s Hospital Los Angeles 323-361-4765 msipin@chla.usc.edu www.chla.org/sypp
  48. 48. Upcoming Webinar: August 15th (11 am - 12 pm PT) The Impact of HIV Criminalization Laws on Young People Laurel Sprague, Ph.Dc The Sero Project The Global Network of People Living with HIV/AIDS, North America